Has Bruce Patterson Cracked Long COVID?

by Cort Johnson | Jul 21, 2021 | Homepage, long COVID | 101 comments

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Bruce Patterson MD is a former Stanford researcher with quite a record. The former Medical Director of Diagnostic Virology at Stanford University Hospitals and Clinics, Patterson has co-authored around 90 papers – most prior to 2011 – at about the time he left the University and created the incellDx diagnostic laboratory. Over the past ten years, incellDx has focused mostly on cancer screening and has produced products to test for HPV, CMV, antibodies, and others. Over the past two years, though, Patterson has jumped back into the publication field, co-authoring 7 papers on COVID-19 with more to come.

In June of 2020, Patterson reported that he’d identified the cause of the so-called “cytokine storm” in COVID-19.

“When we were developing a cytokine quantification assay for possible COVID trials in China, we discovered that infected patients had consistently high levels of CCL5/RANTES in plasma which in some cases was 100 times normal depending on the severity of the disease.”

Patterson and incellDx filed a patent in June 2020 for its CCL5/RANTES diagnostic test for COVID-19, Patterson reported. In October, incellDx reported that it was collaborating on a COVID-19 clinical trial using Pfizer’s CCR5 antagonist Maraviroc – a key part of Patterson’s long-COVID protocol.

Patterson is all over social media. His YouTube interviews and presentations have garnered over 400,000 views over the past year. ABC News just led with a story: “EXCLUSIVE: Lab discovers root cause of confusion, fatigue experienced by COVID ‘long haulers‘

Patterson has become a kind of a sensation … and why not? He’s credible, claims to be studying the largest cohort of long haulers (thousands) in existence, and believes that not only has he found the cause of long COVID, but that he’s put together a treatment regimen that works. No new drugs are needed – everything is off the shelf. It almost couldn’t be better.

How excited are people? One doctor on YouTube is so sure that Patterson has got it right that he recommended that he be nominated for a Nobel Prize. That’s a bit much for a hypothesis and treatment regimen which hasn’t been independently validated yet, but it does portray some of the excitement Patterson has generated.

Patterson, incellDX and the Coronavirua

As noted, it all began in the summer of 2020 when Patterson and incellDX found abnormal levels of cytokines – signaling fire in the body. Patterson’s first COVID-19 paper in May 2020 found a “profound elevation of plasma IL-6 and CCL5 (RANTES)” in 10 critically ill COVID-19 patients. It was followed in January 2021 by a paper showing that a COVID patient with a poor T-cell response was still shedding the virus 90 days after becoming infected. Next, Patterson and his team found that a CCL5 blocker called leronlimab might be a good drug to try in COVID.

Patterson’s two major papers, “Immune-Based Prediction of COVID-19 Severity and Chronicity Decoded Using Machine Learning“, and “Persistence of SARS CoV-2 S1 Protein in CD16+ Monocytes in Post-Acute Sequelae of COVID-19 (PASC) Up to 15 Months Post-Infection” – the second an unreviewed preprint – showed up in June of this year.

Immune Cells and Cytokines

On the face of it, the first paper didn’t seem revolutionary at all. This type of study – which assessed the immune cell subsets and 14 cytokines – has been done many times in chronic fatigue syndrome (ME/CFS). (In a talk, Patterson noted that he’d winnowed down the cytokines from about 150 possible factors to 14.) The study involved a mishmash of 224 acute COVID-19 and long-haul COVID-19 patients and 24 healthy controls.

The study found that CCL5/RANTES, IL-2, IL-4, CCL3, IL-6, IL-10, IFN-γ, and VEGF were all significantly elevated (all P<0.001) while GM-CSF and CCL4 were significantly reduced in COVID patients in general.

Next, they used machine learning to develop immunotypes pertaining to each type of COVID patient and found long-haul COVID patients were characterized by increased IFN-γ and IL-2, and reduced CCL4 production.

Monocyte

Monocytes are the key immune player in Patterson’s long COVID hypothesis (.com staff (2014). “Medical gallery of Blausen Medical 2014”. WikiJournal of Medicine 1 (2). DOI:10.15347/wjm/2014.010. ISSN 2002-4436.)

In a rather torturous sentence, the authors proposed that “the inflammatory context created by these cytokines that leads to T cell activation is not enough to generate an adequate anti-viral response without the proper recruitment signals to attract activated T cells.” My take on that is that they believe that the inflammatory context created by the cytokines, combined with inadequate T-cell recruitment, did not create an “adequate antiviral response” in the long-COVID patients.

The T-cells were apparently raring to go, but the low CCL4 levels failed to attract enough of the T-cells to the virus to successfully fight off the virus.

T-cell exhaustion has been speculated in ME/CFS, but possibly because many T-cells never found their way to the virus, there was no sign of T-cell exhaustion. The reduced number of total T regulatory cells, on the other hand, failed to keep the immune response in check. This was demonstrated by increased levels of B-cells, and in particular, high levels of a monocyte subset.

The authors proposed that high IL-2 levels promoted B-cell proliferation and differentiation, but high IFN-y levels may have damped down B-cell activity.

With the T, and perhaps B-cells, at least somewhat out of action, the immune system threw monocytes into the breach. It was the monocytes that caused the lung damage sometimes found in acute COVID – and which Patterson et al. believe are causing long COVID.

The big takeaway seemed to be that the acute and long COVID patients had trouble fighting off the virus, allowing it to persist longer in them. The immune system compensated for the lack of a proper T and B-cell response by calling in a particular subset of monocytes with some interesting properties indeed.

The Second Paper

The second paper, “Persistence of SARS CoV-2 S1 Protein in CD16+ Monocytes in Post-Acute Sequelae of COVID-19 (PASC) Up to 15 Months Post-Infection“, tied their hypothesis together.

As noted, it wasn’t just the monocytes – it was a particular kind of monocyte – that was increased in both acute and long COVID-19.

First, the group looked for evidence that COVID-19 had infected the monocytes in both acute and long-COVID patients and found evidence of some infection but not a lot. COVID-19 replication does not appear to be the problem.

When they used antibodies to look for evidence of coronavirus proteins in the monocytes, though, they found them – in spades. Seventy-three percent of the “non-classical” monocytes in long-COVID patients carried the coronavirus proteins. (They used another test – Ultra-High-Performance Liquid Chromatography – to largely confirm the results.)

1PMI human rantes02

A human Rantes molecule.

These types of monocytes have often been thought to be anti-inflammatory, but recent studies show that they can, in some situations, produce pro-inflammatory cytokines. They’re mostly involved in “trash cleanup”, and the antiviral response. Interestingly, they appear to be unique in the patrolling behavior they exhibit around the blood vessels.

The authors believe these monocytes were drawn to coronavirus-infected cells in the blood vessels, where they ingested them, and then put a coronavirus protein on their surface to alert the immune system. The problem in long COVID occurs when they are drawn to the blood vessels and injure them, or cause the blood vessels to inappropriately dilate.

These nonclassical monocytes are the only monocytes to carry the CX3CR1 receptor, which when it binds to fractalkine, turns on an anti-apoptotic protein that allows the monocytes to survive longer than usual. It also causes the monocytes to revert from their anti-inflammatory state, and start pumping out pro-inflammatory cytokines.

These are important steps as most monocytes die within a few days, and having very long-lived (up to at least 16 months) coronavirus protein-carrying monocytes is a crucial aspect of Patterson’s hypothesis. Patterson also needs these monocytes to attack the blood vessel walls.

CX3CR1 is also an important player in getting the monocytes to engage in their vascular patrols, and deleting CX3CR1 has been shown to reduce their patrolling behavior.

Monocytes carrying the SARS protein and endothelial cells are producing high levels of CCL5/RANTES – a chemokine that draws the monocytes cells to the endothelial cells. Patterson reported that CCL5/RANTES was upregulated in 80% of long haulers. Once at the endothelial cells, the monocytes bind to them via fractalkine – a kind of immune Velcro.

IncellDX Long COVID (PASC) Research Video with Dr Bruce Patterson | Covid Long Haulers – YouTube

The Gist

- Bruce Patterson MD is a former Stanford researcher who created a diagnostic company called incellDX in 2010. With his interviews and talks attracting more than 400,000 views on YouTube he’s become something of a social media sensation.

- In June of last year, Patterson reported that he’d found the source of the “cytokine storm” in acute COVID-19. Very high levels of a chemokine called CCL5/RANTES were directing immune cells to go on the attack. That month incellDx filed a patent for a diagnostic test.

- Two papers have outlined Patterson’s findings. One found immune signatures consisting of cytokines and chemokines were associated with acute and long COVID patients. That paper suggested that an inadequate immune response to the virus resulted in large numbers of monocytes being recruited to fight off the virus.

- The second paper found that a certain kind of monocyte (called non-classical monocytes) were carrying COVID-19 proteins over a year later in most long COVID patients.  The authors proposed those monocytes had responded to the initial infection by grabbing pieces of the virus and displaying it on their surface for the immune system to respond to.

- Monocytes usually only survive a couple of days but the authors proposed that an interaction with fractalkine gave them longer (much longer) lifespans and caused them to start pumping out proinflammatory cytokines.

- These monocytes appear to be emitting high levels of CCL5/RANTES – a chemokine that directs them to the endothelial cells in the blood vessels where the authors believe they are causing inflammation and causing the blood vessels to dilate.

- The many long COVID symptoms found they believe, are caused by inflammation in different blood vessels across the body and brain. Since exercise mobilizes these monocytes, this process is exacerbated when people with long COVID exercise.

- Patterson has created a “long hauler index” and algorithm which he reports is able to successfully identify long COVID patients. Long COVID patients are able to sign up for these incellKINE tests, get an evaluation, and get referred to doctor.

- Patterson’s three-drug therapy takes 4-6 weeks to work. It aims to kill off the long-lived monocytes carrying the COVID protein and stop those monocytes from migrating to the blood vessels.

- Patterson reports it is highly successful in resolving almost all the symptoms of long COVID.

- Patterson also reported that he’s found that some vaccination side-effects can create a long-hauler-like syndrome which can be treated with his 3-drug package.

- Patterson believes a similar “antigen-driven response” is at play in ME/CFS, FM, and Lyme disease and wants to “aggressively” move into those diseases.  Thus far similar findings have not shown up in ME/CFS. (That might not be surprising given the many different triggers.) The one intriguing possibility that has involves the focus on the blood vessels.

- Patterson’s results need to be validated by outside labs. Treatment studies, of course, are needed, as well.

of course.

The monocyte binding also triggers the production of VEGF – which Patterson reports is elevated in almost all long haulers. VEGF then dilates the blood vessels causing, Patterson thinks, feelings of fullness in the head, migraines, and perhaps cognitive problems.

The many different symptoms that arise depend on where in the body the blood vessels – including those in the brain – get hit.

Rather fascinatingly, Patterson said was the most exciting thing they came across in the literature, where studies indicating that the non-classical monocytes are mobilized by exercise (!), thus providing a possible explanation for the exercise intolerance found.

He also believes that monocytic reservoirs of infection were established early in people who later became long haulers. Those COVID-19 patients treated with steroids might inadvertently have allowed those reservoirs to be established. (If true, that’s something that the NIH-funded studies should readily pick up.)

Diagnosis

Patterson reported they were able to use the immune data to create a “long-hauler index”, and successfully diagnose virtually all the long-COVID patients from the healthy controls. That’s a good step forward, but numerous studies have been able to successfully differentiate people with ME/CFS from healthy controls. That, in itself, is not that big of a deal.

Treating

Successfully treating long COVID is. Patterson, an MD, reported that they started treating long-COVID patients in September 2020. Patterson’s protocol has two main goals:

1. Use CCR5 antagonists to reduce CCL5/RANTES levels, and therefore prevent the monocytes from getting to the blood vessels.

2. Damp down the CX3CR1/fractalkine pathway in order to turn off the long term monocyte survival mechanism that’s allowing them to survive longer than usual. Over time, the monocytes carrying the coronavirus protein will die off.

The Protocol

The treatment protocol is remarkably brief – just 4-6 weeks. First, immune labs are taken and then 3 drugs are given. (The fact that none of these drugs have been used in ME/CFS should remind us how vast the medical drug toolkit is and how many possibilities it holds.)

Drugs

- Patterson long COVID

Patterson uses different drugs to prevent monocytes from getting to the blood vessels

CCR5 antagonist – Maraviroc (Selzentry (US), Celsentri (EU))  is in an antiretroviral drug used in combination with other drugs to treat HIV. (HIV can use the CCR5 receptor to enter the cell). Its efficacy against the coronavirus is also being explored. Maraviroc also stops monocytes from moving around the body in response to CCL5/RANTES – a chemokine which is produced in endothelial cells. Maraviroc comes with plenty of warnings, including a black box one, but Patterson says its is safe – and has two papers coming out on it. Most long haulers are on for 2-4 weeks and the longest has been 8 weeks. Maraviroc, he said, was incredibly effective in relieving tinnitus and brain fog and typically did do so in 3-5 days. He said “we see it (tinnitus) a lot, and treat it a lot and are very good at eliminating it.”

- Statins – by inhibiting fracktalkine, it stops the monocyte cells from attaching to endothelial cells on the blood vessels.

- Ivermectin -an immunomodulator and anti-parasitic drug is used because of its persistent antiviral properties. It also affects cell membranes. A meta-review of 11 randomized Ivermectin COVID-19 trials found a significant reduction in hospitalization and and 56% reduction in death. Many of the trials were not peer-reviewed, and a wide range of doses was used. A placebo-controlled Ivermectin COVID-19 study is underway at the University of Oxford.

The majority of patients see some improvement in two weeks. After 4 weeks, more improvement is seen and the labs are repeated to see if the immune system has been restored. Weeks 4-6 typically see the immune systems returning to normal and people getting back to normal lives with most of their symptoms gone. The 5-10% of the symptoms left at this point were, he thought, probably to being sedentary or bedridden for so long. He slowly starts them off on exercise during this period.

Serial monitoring of some patients has shown that the levels of the monocytes carrying the SARS-CoV-2 protein are declining. He believes eventually these cells will get cleared, and when they do, the disease is apparently over. (One doctor did refer to possible blood vessel damage if the condition is present for too long).

Many people, he said, have had success with the protocol, and he could count on the fingers of his hands the number of people who have not responded.

Post-Vaccination Long Haulers?

Patterson reported he’s assessed from 100-200 people who came down with what looks like long COVID in the months after being vaccinated. Machine learning analyses indicated it was a quite heterogeneous group, but with one exception (no elevations of VEGF), immunologically, they looked like long haulers and the long-hauler treatment worked for them.

Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia and Lyme Disease

Patterson clearly feels for the long haulers saying that it’s “gut-wrenching” that “it’s taken us this long to recognize long COVID and treat it aggressively”. “The economic hardship of long COVID” he said, “is mind-boggling…”

Patterson believes similar processes are at work in ME/CFS, FM and Lyme disease and promised to move aggressively on them

Lives disrupted, jobs lost, health gone, relationships impacted – it’s all true – yet it’s a walk in the park compared to what the really long haulers – the people with ME/CFS – have experienced.

Patterson has not forgotten them, though, and said he plans to aggressively expand into chronic fatigue, fibromyalgia, and post-Lyme disease, where Patterson believes similar processes (i.e. some sort of ongoing antigen stimulation) are in play.

He suggested that in Lyme disease, pieces of the cell membrane of bacteria may remain in the blood for months/years.

The consistent cytokine/chemokine pattern found in his long haulers has not shown up in ME/CFS, however. A few studies have highlighted only a few of his markers. One metareview found increased L-2 and IL-4 levels in ME/CFS and another study found reduced levels of VEGF.

A recent review of cytokine levels in 15 ME/CFS studies of overall moderate quality didn’t find any consistency in cytokine results.

“The findings of this study indicate that of the 64 cytokines analyzed, none appear to differ with any consistency between CFS/ME/SEID patients and healthy controls, in either serum or other physiological fluids, despite comparability between each study’s analytical methods…despite the consistent data, the findings of this review are inconclusive as to whether cytokines play any definitive role in CFS/ME/SEID, other than provide some evidence of a concurrent inflammatory process.”

Nor have altered monocyte levels been found in ME/CFS. Out of the many gene expression studies, only one found evidence of increased monocyte expression.

Of course, ME/CFS is much more heterogeneous than long COVID. Different pathogens or different triggers may elicit different responses; i.e. some other form of antigenic stimulation – if it’s present – may, and probably is, be tweaking the immune systems of different patients. One very nice intersection between Patterson’s and recent ME/CFS hypotheses and findings is the focus on the blood vessels.

If Patterson’s hypothesis wins out in long COVID, one would think it would spur quite a search into the antigenic stimulation possibly underway in ME/CFS, FM, Lyme disease, and others.

Cracking long COVID?

IncellDx has clearly gone all-in on long COVID. (Because it’s a diagnostic laboratory it stands to do very well selling its test kits. It should be noted that Patterson’s findings – while exciting – have not been validated by outside researchers. Some may remember the XMRV testing that didn’t work out in MECFS.)

It’s rare, though, that you see this kind of engagement. An online Chronic COVID Diagnosis and Treatment Center has been created “…in partnership with prominent research facilities, clinicians, and medical laboratories”.  Long-COVID patients can get the cytokine/chemokine incellKine test kits here. A telemedicine appointment is then scheduled, after which incellDx will apparently match you up with a doctor. Check out FAQs here.

IncellDx is all in on long COVID. It’s recruiting patients and doctors, publishing papers, creating apps, and branching out into other countries. Time will tell if it’s cracked long COVID.

Patterson reported they are working with a hundred physicians to support them in writing the needed prescriptions and managing their patients. (Doctors can become a part of their network of treating providers here.)

IncellDx has a pilot study going in the UK and is moving into Central and South America. IncellDx is also creating an app and watch that will help track symptoms, HR, HRV, meds, and labs. They’re also looking at post-vaccination illnesses. Studies from the Patterson team are continuing to come out. Patterson wants to move into ME/CFS, FM and Lyme.

It’s no wonder that Patterson recently said he’s working from the time he wakes until his head hits the pillow at night.

Treatment studies, including at some point, placebo-controlled treatment studies are obviously crucial. With hundreds of doctors trying his protocol Patterson is potentially gathering a lot of data. Patterson’s immune findings also need to be validated by other labs. A lot needs to happen before we can say Patterson has cracked long COVID.

People who’ve been around ME/CFS have seen promising hypotheses and even good data fall by the wayside before. The body, as Ron Davis has reminded us, is a tricky, tricky thing. Certainly, it seems a bit early for long COVID to fall (I expected it to take a couple of years) but hopefully Patterson’s cracked it in record time – and will take his shot at ME/CFS and other diseases. Time, of course, will tell.

1. is this the first past vaccine long hauler development researcher who says it happens? i feel it on top of my ME. like many…

can not follow “the news” so i am asking.

Vlynx on July 22, 2021 at 2:01 am

Oh dear. I had high hopes for this theory & approach but when I read of the extraordinarily high treatment response he’s claiming my skeptic sense was alerted. Then, when I read the 3rd drug in his treatment regimen is ivermectin, I deflated. Ivermectin’s “antiviral” properties only occur in vitro at concentrations far beyond those achievable in the bloodstream without severe toxicity. Of course this isn’t an antiviral treatment per se so maybe. maybe he has come up with a plausible mechanism for it to do something useful in the tiny amounts absorbed through the gut (which is where it is so effective treating worms & parasites).

However, ivermectin has bern a magnet for irrational hope in COVID-19 treatment and prevention, causing clinicians to throw out common sense out of desperation need for a saving medication. See the devastating news about how the largest ivermectin clinical trial to date, done in Egypt, is also likely the largest case of scientific fraud perpetrated ever (worse than PACE!). Because it was such a large trial, with amazingly positive results, it heavily skewed the 2 recent meta-analyses done with ivermectin for COVID-19.

The study was a preprint, not peer-reviewed. Medicine has been willing to cut too many corners in looking for answers in this pandemic, understandably. We need to guard against the same in ME/CFS. I do hope Patterson is on the right track. It would be wonderful. But, let’s do the work before selling it.

About the now retracted ivermectin study: https://www.google.com/amp/s/www.sciencealert.com/ivermectin-study-controversy-is-a-huge-wake-up-call-for-fraud-in-covid-19-science/amp

- jKat

jKat on November 3, 2021 at 4:29 pm

In response to Vlynx…. there have been some virologists form the beginning that have questioned the classification of this pathogen as a “virus” for a couple of reasons. Firstly, it does not behave as a virus. Viruses typically have lots of mucous associated with them, while this one is mostly “dry”. They also found it very curious that it responded so well to anti-parasitic drugs. I’m not a doctor, but it’s food for thought….

2. Carolyn

Carolyn on July 21, 2021 at 5:35 pm

Good for Covid long-haulers, but please, please, please, ME/CFS patients need an effective treatment even more! We have waited soooo long and continue to lose years/decades of our lives.

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3. Cwmcmahan

Cwmcmahan on July 21, 2021 at 5:53 pm

I think it was $420.00

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4. Alexis

Alexis on July 21, 2021 at 6:10 pm

Hi – I have long Covid. A lot more of us than you may think do very much understand the connection to ME/CFS. We see you and want us to all work together. We appreciate your advice and experiences.

I’m very sorry to say that while many in the Long Covid community are closely following IncellDx, an equal number of people are very skeptical. I think they have uncovered some interesting ideas but I don’t think it’s the solution. I have taken Ivermectin and it did nothing at all. For some it helped a few symptoms here and there. Others in my support group have tried statins, most without any real results. Statins did help one person quite a bit but they had more lung/heart involvement it seems. Maraviroc made one person worse. All these meds have been very hard to access. They have been also using prednisone, or at least they were at one point, which is concerning to a lot of us if we don’t know whether the immune system needs to be ramped up or calmed down. Obviously it’s different for everyone and maybe some have been helped, but do be wary. I don’t know of any people reporting success with this even though they keep saying they’ve had so much success. I don’t think that Bruce Patterson has malicious intentions. It might be one piece of the puzzle. Maybe they will keep looking and find the real answer. I will say Bruce is one of the few looking at viral persistence. Viral persistence doesn’t necessarily exclude ME/CFS either… what if it’s all viral persistence of a different sort, but in the tissue not the blood so it’s harder to find? I don’t know the answer just throwing it out there. Also any research that explores vascular issues is great I think because there really seems to be something to that. And that they want to do research at all and explore Lyme and other conditions is excellent.

Anyway. Just popping by to say if you’re worried this will solve long Covid and you’ll be left in the dust, I doubt it will. We will be there in the dust with you. Fingers crossed for us all !!

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- LindaB

LindaB on July 21, 2021 at 7:32 pm

Hi Alexis, i would like to say ‘welcome’ to the group but really i am sure you probably did not previously know of its existence and if asked, i am certain you would say, you would NOT have wanted to join. Sadly…. welcome.

Thanks for you perspective.

There may be one ‘benefit’ to research in the Long Haul arena in that the virus that mediated the illness is a known/identified virus. Seems to me that might make the investigations more homogeneous. I am not sure of that.

Within the ME/CFS Fibro arena the problems have initially presented from various afflictions and breakdowns, and resultant longstanding failures of the body to perform efficiently have resulted in a corollary of other symptoms to complicate the investigations.

I wish you luck in resolving your issues. i hope if you are fortunate in that regard that you will still have some interest in those who are left lingering and looking to get their lives back.

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- Cort Johnson

Cort Johnson on July 23, 2021 at 3:37 pm

Thanks very much for giving your perspective Alexis. I hope we all emerge from the dust together! 🙂

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- Sylvia

Sylvia on July 25, 2021 at 4:06 am

Thanks Alexis. I appreciate your kindness and sensitivity. Many people with ME are automatically averse to Long Covid people because it’s like an instant replay of PTSD and the decades of neglect. I get the feeling that Bruce has very honorable intentions but we could all do without Dr Yo – aka Dr Ram Yogendra – bragging about how much money they will make. It is in very poor taste and he seems oblivious to the many people living in poverty because of their disability. Sadly, it seems indicative of human nature that a person can’t fully understand something until they have themselves experienced it.

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5. Bottsie

Bottsie on July 21, 2021 at 7:11 pm

Oh, boy…this sounds so promising! I’m wondering if Dr. Patterson is comparing notes with Ron Davis at all, since they are both from Stanford? Also wondering if the drugs Patterson lists are showing promise in Ron Davis’ yeast experiments of all FDA approved drugs? Ivermectin is very similar (but not exactly the same) to the Suramin Dr. Robert Naviaux thinks will treat not only ME/CFS, but ASD as well (trials scheduled for 2022). I wonder if the other two drugs Patterson suggests fills in the gap between Ivermectin and Suramin? Also, this suggests a possible 4-6 week possible treatment period. Will that be a one time treatment?

Still so many questions, but some hope to hold onto… Prayers said and EVERYTHING crossed!! XX ? XX

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- Cort Johnson

Cort Johnson on July 22, 2021 at 8:22 am

Someone asked on the one of the interviews if he’d talked to Ron. He said he hadn’t but would be happy to. He also said he’s extremely busy and is doing nothing but long COVID from early in the morning to late at night. incellDx is certainly taking on a lot. I hope Ron can chat with him, though.

I don’t see how the monocyte issue fits with ME/CFS. He’s found the antigen to the coronavirus in monocytes in patients over a year and a half later. Could those monocytes last for the decades that people have ME/CFS?

I’m just a laymen but I would think it would have to be something else….

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- Bottsie

Bottsie on July 22, 2021 at 7:31 pm

Another good question, Cort. I’d also like to know what Dr. Bhupesh Prusty thinks of all this, since he believes EBV (my trigger) reactivates other viruses (probably in the body since childhood). I don’t fully understand all of this, but I wonder if reactivated viruses behave differently than a new virus entering the body. So many questions…hoping we have some mind-blowing answers (in the form of treatments) soon.

- sunie

sunie on July 22, 2021 at 10:26 pm

Bottsie, i am with you re: wonder what Prusty Bhupesh thoughts are.

https://mobile.twitter.com/bhupeshprusty?lang=en

in addition, with ivermectin being anti parasites, wonder if Dr. Alan McDonald, a hospital pathologist who used probes that showed spirochetes in MS brain samples, as well as tiny worms in cfs, and in AD brain samples.

https://durayresearch.wordpress.com/about-2/background/curriculum-vitae-alan-b-macdonald/

but i do not know if ivermectin even passes into brain– or if ivermectin will show up to have currently unknown benefits/effects in addition to being anti- parasitic.

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6. Frank

Frank on July 21, 2021 at 7:13 pm

Don’t know if it’s any good but the “FLCCC Alliance” has also come up with a Long Haul COVID-19 Syndrome protocol also.

https://covid19criticalcare.com/covid-19-protocols/i-recover-protocol/

Still hoping for a ME/CFS protocol that works…

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- c

c on July 22, 2021 at 1:41 pm

its the same protocol

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7. Gail Nardi

Gail Nardi on July 21, 2021 at 8:16 pm

Hi Cort, once again thank you for all your consistently amazing work!

Your articles have given me rays of hope many times. The past 15 years of illness have been difficult and at times a little hope has been the only thing that has kept me going.

I’m sending another small donation to help support you as you work for us all. I know every little bit helps.

Cheers,

Gail

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- Cort Johnson

Cort Johnson on July 23, 2021 at 3:40 pm

Thanks Gail! In case some people don’t know. Health Rising is community supported – you are the reason we are online 🙂

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8. Wayne Brissett

Wayne Brissett on July 21, 2021 at 11:50 pm

I would like to see this type of research conducted for people whose ME/CFS was triggered by Epstein Barr virus. We have suffered for DECADES.

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- Cort Johnson

Cort Johnson on July 22, 2021 at 8:23 am

I imagine that would be top of Patterson’s list of things to check.

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- sunie

sunie on July 22, 2021 at 10:49 pm

@Wayne Brissett

if the following interests you

re: epstein barr and hhv

“Article

Frequent HHV-6 reactivation in multiple sclerosis (MS) and chronic fatigue syndrome (CFS) ”

at site:

https://www.researchgate.net/publication/12578403_Frequent_HHV-6_reactivation_in_multiple_sclerosis_MS_and_chronic_fatigue_syndrome_CFS_patients

and

“Activation of human herpesviruses 6 and 7 in patients with chronic fatigue syndrome”

at site

https://www.researchgate.net/publication/6529087_Activation_of_human_herpesviruses_6_and_7_in_patients_with_chronic_fatigue_syndrome

and

“EXPLAINING ME/CFS: PRUSTY NAVIAUX STUDY TIES INFECTIONS TO ENERGY BREAKDOWNS”

APRIL 27, 2020 / KARMAN KREGLOE / UNCATEGORIZED

Originally published by Cort Johnson | Apr 26, 2020 | HealthRising

at site

https://solvecfs.org/explaining-me-cfs-prusty-naviaux-study-ties-infections-to-energy-breakdowns/

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9. RonP

RonP on July 22, 2021 at 1:09 am

“Success consists of going from failure to failure without loss of enthusiasm.” – Winston Churchill

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- Cort Johnson

Cort Johnson on July 23, 2021 at 3:41 pm

That is like the theme for ME/CFS. What a great quote – thanks!

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10. Vlynx

Vlynx on July 22, 2021 at 2:30 am

If anyone wants to learn more about the amazing details behind the large retracted Egyptian ivermectin study the preprint of which was used in recent COVID-19 meta-analyses, thus Medium article is great. I mention this in a comment above somewhere. Of course, it’s somewhat tangential to this discussion but should, once again, stir our inner skeptics about research that sounds too good to be true.

https://gidmk.medium.com/is-ivermectin-for-covid-19-based-on-fraudulent-research-5cc079278602

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- Nikki

Nikki on July 22, 2021 at 4:20 am

I have been following dr mobeen recently who also says he has seen great improvements in his patients with ivermectin. He is in no way affiliated with it and is not profiteering from it either as you are unable to get him to treat you and he is just putting his opinions out there in chit chat videos. Youtube have removed over 50 of his videos that have mentioned ivermectin in it and its clear big pharma have a hand in this. He also says that there is a huge pushback with big pharma because if word gets out that its so successful it will hinder their hugely profitable vaccine programme and they are actively trying to debunk these studies on ivermectin. There is a large group of doctors and scientists who have organised a world ivermectin day to try and get word out which is on the 24th july i think. With all that in mind its difficult to know what to believe and im not sure if this article you have shared is big pharma debunking it or not. At the moment though my faith is in dr mobeen and his fellow doctor friends

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- Eliza

Eliza on July 25, 2021 at 5:44 pm

Nikki I completely agree.

It is shocking how much of the good data and studies on Ivermectin have been ignored.

Why is the person above going on and on about the Egyptian study but not mentioning the Mexico City study? Which showed overwhelming evidence of it’s efficacy when given early. Or the other studies which have been peer reviewed and found to be very convincing. Of course there is some bad science, that doesn’t mean it’s a bad drug. It’s one of the most prescribed drugs in the world apparently, because of it’s usefulness with parasites, scabies and river blindness. Generally well tolerated.

And I have personal experience of taking it.

I have both M.E and Long Covid.

Ivermectin did not cure either BUT it did save me from having to go to hospital when I experienced either a reinfection or a strange inflammatory episode during my Covid long haul, where my lungs felt like they were rapidly filling with fluid.

My breathing was very laboured and my oximeter showed decreased oxygen saturation. I took one pea-sized amount and within an hour my lungs were back to normal pretty much and I could breathe easily again. It felt like a small miracle.

So for acute infections where it’s so very important to reduce the inflammation, I believe Ivermectin must be very effective, providing it’s given early enough. It really is an incredible anti-inflammatory. And as we all know, it’s the inflammation that gets you with Covid.

For my long haul general symptoms, it does wipe them out temporarily (because it’s such a good anti-inflammatory) but then they come back once it’s worn off.

And when I take high doses it does also make my lymph nodes ache badly, and gives me unpleasant after effects. But I still would always take it if I felt the sadly-now-familiar sensation of my lungs closing up.

11. Nikki

Nikki on July 22, 2021 at 4:25 am

https://bird-group.org/world-ivermectin-day/ this is the link for the uk group of world ivermectin day

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12. Jessica Bardzil

Jessica Bardzil on July 22, 2021 at 6:16 am

Very interesting , . I in two and half month ongoing deterioration of ME since second jab, had been improving a bit before, much more disabled and ill now.

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13. Syd

Syd on July 22, 2021 at 7:38 am

Super interesting and super hopeful. I think I have a kind of post-vaccine inflammatory syndrome. Thank you!

Ivermectin is showing up in studies now: https://journals.lww.com/americantherapeutics/fulltext/2021/06000/review_of_the_emerging_evidence_demonstrating_the.4.aspx

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14. Herbert Renz-Polster

Herbert Renz-Polster on July 22, 2021 at 12:21 pm

What an interesting story! In fact, this may later be seen as one of the most fascinating stories in Long Covid research. I would suggest: A story in which a researcher was right for the wrong reasons.

First of all, there are quite a few reasons to be critical of Patterson´s work and claims about Long Covid:

a) it is based on really limited analyses of 46 patients, according to which some SARS-CoV-2 protein remnants seem to persist in certain immune cells – not very surprising and already suggested by other authors

b) his therapy for Long Covid (inhibition of CCL5) was actually first developed for acute severe COVID-19 – based on work which shows that CCL5 is vastly elevated in acute COVID-19 (with the highest levels seen in the most severe patients).

c) now he suggests CCL5 inhibition for Long Covid – from which we know that the risk of developing symptoms has nothing to do with severity of disease…

d) … he builds this suggestion on a rather tortuous hypothesis with several assumptions in which a subset of monocytes is dysfunctional and thus trigger endothelial dysfunction through VGEF. Interestingly, many of the pathomechanisms suggested by other teams about the inception of Long Covid do not appear in this explanation, like disturbed immune regulation, autoimmunity, neuroinflammation…

e) And yet another assumption shared by other researchers is not part of his hypothesis: that indeed a subset of Long Covid is a form of ME/CFS (in fact, Patterson believes Long Covid is a separate entity)

f) with his hypothesis on Long Covid he does not proceed to first publish a few results of some pilot trial and then proceed to larger clinical trials – instead, he first reports to be able to accurately diagnose Long Covid patients – and to have healed thousands of them.

This is clearly unusual. A researcher has a hypothesis based on a small study published as a preprint – and begins to diagnose and treat thousands of patients in different continents with a homespun therapy not yet evaluated in a “real” clinical trial. Hmmm

Many reasons to say: possibly fishy.

Yet, I believe in Bruce Patterson´s therapy. For Bruce Patterson so much is at stake and he is so much part of the scientific community that his claims of successful treatment just cannot be made up – they must be real. Also, he is experienced enough that he will be able to tell that he is actually observing rather strong treatment effects.

So the real and better question for me is: does his therapy possibly work for different reasons than he assumes?

And indeed there is evidence that this may be the case:

Take the mode of action of his CCL5 blocker, Maraviroc. Dr. Patterson suggests that Maraviroc influences some perfusion related downstream effects from dysregulated non classical monocytes (their job is to gobble up viral antigens).

.

But in fact Maraviroc has much broader biological effects.

For one, Maraviroc may indeed be a potent glial modulator with neuroprotective abilities. It has been shown that Maraviroc acts on the CCL5 receptors on astrocytes and microglia and may tune down astroglial activation and excitotoxicity ((https://www.nature.com/articles/nrneurol.2015.248)) ((https://pubmed.ncbi.nlm.nih.gov/24047524/)). Also, Maraviroc is able to attenuate the infiltration of T Cells into the Central Nervous System ((https://www.jimmunol.org/content/202/12/3412)). Indeed, in mouse models, CCL5 blockade has been shown to improve recovery after traumatic brain injury ((https://pubmed.ncbi.nlm.nih.gov/33453212/)) and stroke ((https://www.sciencedirect.com/science/article/pii/S00928674193)); it has also been suggestes as therapeutic intervention in several inflammatory brain disorders ((https://pubmed.ncbi.nlm.nih.gov/24047524/)).

Also, and very interestingly, CCL5 may play a role in the control of endogenous infections or reactivations in the CNS ((https://www.nature.com/articles/nrneurol.2015.248)) – the latter which may be interesting as there seems to be a fair amount of EBV reactivation going on in Long Covid. ((https://www.mdpi.com/2076-0817/10/6/763))

So again, the treatment success that Dr. Patterson reports may be real – but for other reasons than suggested.

In fact, there are suggestions from his own reports that his ideas about how Long Covid symptoms come about and how Maraviroc is supposed to fix them may not be plausible: He claims that his therapy also works against vaccine induced Long Covid. Yet, in this category the key element of his hypothesis (dysfunctionmal non classical monocytes) should not play a role (there is just no viral garbage to be gobbled up).

So again, maybe Dr. Patterson (who first came out with a unifying theory about “cytokine storm” in acute COVID-19 based on elevated CCL5 and then created a unifying theory on Long Covid, again based on elevated CCL5) just stumbled across something most welcome for the therapy of neuroinflammatory disorders like Long Covid (and/or ME/CFS): a potent glial modulator.

Luck happens?

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- sunie

sunie on July 23, 2021 at 2:41 am

wonder if Maraviroc or Pederson’s combination therapy could be trialed on similar mice to the mice in this unique study ( fibromyalgia)

featured in uk’s weekly research round-up

at site

https://meassociation.org.uk/2021/

https://meassociation.org.uk/2021/07/research-passive-transfer-fibromyalgia/

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- M

M on July 25, 2021 at 1:39 am

@Herbert

Yes!

Very good observations!

I also wonder what are the ‘side effects’?

This may help elucidate what is the mechanism at work, etc.

– I view the use of the term side-effects, much like ‘paradoxes’, it’s a reflection of the medical culture that creates/uses it. So that it is inherent to how the substances is interacting with different systems in the body

Because it doesn’t fit with their view of the body, it gets labeled as ‘side effect’

Etc –

15. Rick

Rick on July 22, 2021 at 2:45 pm

This is very interesting and seems promising. I hope they can find some treatment regimes that work.

What’s perhaps even more hopeful is that apparently they are easily able to differentiate long haulers from controls. Even if no silver bullet treatment is found, possibly at some point there could be some test to identify ME/CFS reliably. That in itself would be a huge step forward.

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16. Jilly in AZ

Jilly in AZ on July 22, 2021 at 4:41 pm

“An antiretroviral drug used … to treat HIV.” Interesting, because the only treatment, so far, that affected me significantly over the years was another antiviral drug developed to treat HIV: CIDOFOVIR.

I did 9 rounds of IV Cidofovir with the late Dr. L. Martin Lerner in Michigan. Within 6 months, I was able to RUN 5+ MILES on a treadmill.

Unfortunately, a devastating life event and subsequent divorce uprooted my world and the heartbreaking stress, in addition to me overdoing it at the gym caused me to relapse. It’s been 5 years since then, and I have a hard time just walking up the stairs; I’m completely crashed.

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- Sylvia

Sylvia on July 25, 2021 at 4:28 am

Sorry to hear that story Jilly. I wish I were surprised. If ME had been labelled as a potentially fatal immune disorder such as HIV, we would be far ahead of the game at this point with antiretroviral therapies and/or medications like Ampligen. Instead, we hear about heartbreaking stories such as yours and learn of the suicides that have plagued this community for decades. Those in pain and distress are unable to access medications to relieve that pain and are relegated to “look on the bright side” enterprises when their marriages fail and they lose everything that has kept their lives on an even keel.

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17. Rebecca

Rebecca on July 22, 2021 at 5:12 pm

This sounds impressive, but I will be STUNNED if it pans out.

I bet the whole thing falls apart with the first randomized, placebo-controlled trial.

It reminds me of the whole “chronic Lyme“ scheme, which is based on virtually no science. Patterson and the LLMDs even use one of the same drugs off-label: statins.

Patterson‘s for-profit lab reminds me of IGeneX, which says that EVERYONE has Lyme disease.

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- Christina

Christina on July 23, 2021 at 12:45 pm

Do those alternative tests really say everyone has Lyme? I was told to do that test by a ND.

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18. Caleb

Caleb on July 22, 2021 at 7:06 pm

There are some studies of ME/CFS where the cytokines do match up more closely:

Lechner et al. (2017). Impact of Rantes from jawbone on Chronic Fatigue Syndrome. https://pubmed.ncbi.nlm.nih.gov/28685531/

RCT. HC=19, CFS=21

“FDOJ cohorts showed a 30-fold mean overexpression of RANTES and a 20-fold overexpressed level of FGF-2 when compared to healthy controls.”

Hardcastle et al. (2015). Serum Immune Proteins in Moderate and Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis Patients

https://doi.org/10.7150/ijms.12399

HC=22, moderate CFS=22, severe CFS=19.

“IL-1β was significantly reduced in severe compared with moderate CFS/ME patients. IL-6 was significantly decreased in moderate CFS/ME patients compared with healthy controls and severe CFS/ME patients. RANTES was significantly increased in moderate CFS/ME patients compared to severe CFS/ME patients. Serum IL-7 and IL-8 were significantly higher in the severe CFS/ME group compared with healthy controls and moderate CFS/ME patients. IFN-γ was significantly increased in severe CFS/ME patients compared with moderately affected patients.” (Same research organisation as Corbitt et al., 2019)

Yang et al. (2019). The clinical value of cytokines in chronic fatigue syndrome

https://doi.org/10.1186/s12967-019-1948-6

“Montoya et al. reported that IFN-γ levels exhibit a significant linear upward correlation with CFS severity [22]. The above-mentioned evidence indicates that IFN-γ, rather than IFN-α/β, is a good biomarker in the early stage of CFS and that it can be used for clinical decisions regarding CFS severity.

Increased IL-2 levels in blood were confirmed by both clinical and bench studies [52, 53]. A recent study reported an enhancement of circulating pro-inflammatory cytokines (including that of IL-2, IL-6, and TNF-α), which was associated with depression in patients with CFS [26]. However, some studies have contradicted these results, with no significant differences in IL-2 levels between patients with CFS and healthy controls [43, 54].”

In Dr. Shoemaker’s CIRS studies:

– He finds a low Treg ratio, that Dr. Patterson also sees in his Long-COVID patients

– He advises the use of statins to reduce high C3a

However, he largely sees VEGF as a positive and sees lows VEGF as a factor in hypoxia and post-exertional malaise. The normal range he, and Quest, uses is also very different to Dr. Patterson’s: 31-86 pg/mL versus < 20 pg/mL.

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19. Ian Hodgson PhD

Ian Hodgson PhD on July 22, 2021 at 7:42 pm

Many viruses alter signalling processes. ME is an alteration of signalling. CCL5 is associated with inflammatory signalling. Virus infection, post infectious disorder and ME are extremely complex and you would expect a rise in CCL5 as well as many other signalling proteins. To focus on CCL5 as THE causes of post viral and ME syndromes is naive but I can understand the hope. It may form part of a test but not a test in itself.

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20. Robyn

Robyn on July 23, 2021 at 6:43 am

Prior to my Lyme diagnosis, my T-cell count was drastically low. So low, in fact, they kept sending me back for HIV testing despite my monogamous marriage and no history of IV drug use. Lyme attacked my immune system, and basically shut it down. My very wise Lyme literate doctor also put my on antivirals to fend off coinfections along with my IV rocephine to treat my undiagnosed Lyme disease.

If you have ME/CFID/CFS, please get a Western Blot and Urine Luat test for Lyme disease. That was my first incorrect diagnosis. And if that is negative, please take some antivirals. They will change your life!

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- Christina

Christina on July 23, 2021 at 12:47 pm

What specific antivirals?

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- George

George on July 24, 2021 at 3:25 pm

Many will ask this question- if i’m unable to get a test, what if i take these antivirals? I’am in such a situation and i want to do something , instead of doing nothing.

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21. Veteran Air commodore Dr HSR ARORA

Veteran Air commodore Dr HSR ARORA on July 23, 2021 at 8:15 am

Very unique research work . My assessment of Post COVID 19 Syndrome is global micro & macro blood vessels & lymphatics endothelial dysfunction as a result of persistence of inflammation in vessels .Causing forward & reverse logistic system dysfunction failure.

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22. Debbie

Debbie on July 23, 2021 at 9:05 am

Yes, Ivermectin really helps with covid, long haul and Lyme. Be sure and also do a heavy metals detox. Parasites in your body absorb heavy metals and when they die from the Ivermectin, your body then absorbs the metals. Can cause a number of symptoms. Check out mercury toxicity symptoms. Hope this helps someone.

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23. Betty Mekdeci

Betty Mekdeci on July 23, 2021 at 10:06 am

I was interested in the comments about the children of fathers with exposure to Agent Orange. Our National Birth Defect Registry collects data on all kinds of birth defects and health conditions. For many years, we have worked with Vietnam and Gulf War veterans. Of 505 cases of ME/CFS in our registry, 393 are in the children of Vietnam veterans who had exposure to Agent Orange.

A note about statins: long before statins were used in mold therapy, cholestyramine (an older statin) was used to detoxify workers exposed to Kepone, a chlorinated pesticide made by Allied Chemical company.

My new doctor got Covid and treated himself successfully with ivermectin.

Maraviroc has some very, very serious side effects. I think it would be very problematic in anyone with Mast Cell Syndrome because it can cause life-threatening allergic reactions. That brings to mind an interesting question: do Covid Long Haulers develop Mast Cell Syndrome? Do they have crimson patches in their throats? Fingerprint changes? Blood cell deformations? Just wondering.

Finally, according to the late Paul Cheney, for many years the CDC monitored a significant number of ME/CFS patients who were immune deficient with very low T cell counts and anergy (absence of response to antigens). These cases looked like AIDS, but were HIV negative.

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24. Norman Ratliff III, MD FACC

Norman Ratliff III, MD FACC on July 24, 2021 at 6:18 am

My wife contracted long Covid and has been debilitated for 18 months. I am a clinical cardiologist. I had a long discussion with Dr. Patterson yesterday and truly believe in this man’s credibility. I believe that he has in fact determined the underlying pathophysiology of this disease and has developed a breakthrough diagnostic test and treatment protocol that will also eventually lead to a treatment for ME/CFS.

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- Cort Johnson

Cort Johnson on July 24, 2021 at 1:50 pm

Good to hear! Let’s hope he’s on the right track.

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- Sylvia

Sylvia on July 25, 2021 at 4:54 am

Thank you Norman. While I am sad to hear of your wife’s condition, I have the same impression of Dr Patterson. Hopefully he can put the brakes on the self-congratulatory antics of Dr Yogendra. What Dr Yogendra may not realize is that patients and their loved ones are also reading his twitter feed. Granted, scientists love to get excited on twitter and congratulate each other, but a word of two of understanding and compassion might be called for to temper a young man’s boasts in the face of tragedy. The stories of Long Covid patients, ME patients, previously healthy people contracting the same symptoms after vaccinations, as well as ME patients experiencing devastating relapses after vaccinations (not just the current vaccinations) call for some decorum, in my opinion. I hope your wife makes a full recovery.

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- Anthony Cade Minniti

Anthony Cade Minniti on August 18, 2021 at 8:34 pm

How is your wife doing? Any update?

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25. Ricardo Hausmann

Ricardo Hausmann on July 25, 2021 at 3:27 am

I think an important part is missing in the story of Dr Bruce Patterson #Leronlimab https://youtu.be/uSfzhwkByf0

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- Cort Johnson

Cort Johnson on July 25, 2021 at 8:38 am

Leoronlimab is another CCR5 inhibitor which Patterson used trials of acute COVID. I don’t know why Maravaoric (however it’s spelled) had become the drug of choice for long COVID. If I remember correctly in one of his interviews Patterson said another inhibitor was on the way.

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26. TRACEY G

TRACEY G on July 29, 2021 at 10:50 am

In the article I read about Patterson’s Long Covid protocol, he mentioned that he has treated 2,000 people with Long Covid and 98% of them recoverHas ed within 6 mos of starting his treatment. If this is the case, seems like a good number of these 2,000 former patients would have posted something about their successful treatments on social media. Has anyone seen any such posts? Or maybe my logic here is wrong?

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- Cort Johnson

Cort Johnson on July 29, 2021 at 1:21 pm

98%! That kind of number scares me. Is there any disease with such a high success rate?

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- Tracey G

Tracey G on August 4, 2021 at 11:30 am

Heres’s the link to the interview with Dr. Patterson where he makes that claim. It’s around the 2nd question’s answer. In his defense, I think he’s only treating patients who meet specific markers he tests for before agreeing to treat. Maybe that accounts for the crazy high success rate.

https://www.eatthis.com/news-long-covid-cure-doctor-patterson/

- Cort Johnson

Cort Johnson on August 7, 2021 at 8:17 am

Good point about the specific markers. I can’t remember how effective they were at identifying long COVID patients in the study. That’s a good number to know. I think it was in 80 percentiles. Looking forward to seeing some treatment studies.

27. Kathe B.

Kathe B. on August 9, 2021 at 2:09 pm

This is reminding me of the German study that was done that found many with ME/CFS were not able to fully clear EBV. I got excited about that (like I did when they got us all worked up about XMRV and we all thought, this must be it!! Til it wasn’t) So I hoped the German study would figure out how to get our systems to go the extra distance to be able to clear it and we’d get better. Heavy sighhhhhhhh I find I’m weary of feeling hope now. I got ME/CFS at age 36, now I’m 69 and I hope reincarnation is a thing because I feel like I got cheated out of having a life this go-round.

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28. Elsa K

Elsa K on August 27, 2021 at 10:57 am

It’s because maraviroc already has been approved by the fda (for HIV) where as lerimnolab is still going through the approval process.

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29. wished i lived there and could get his treatment post vaccin long hauler

30. George

George on July 21, 2021 at 4:09 pm

Very interesting and cost effective! What is his his protocol, i would try it . Maraviroc seems problematic to get it, Statins and Ivermectin are easy available.

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- Cort Johnson

Cort Johnson on July 22, 2021 at 8:07 am

One thing I didn’t see was dosing. I also couldn’t find out the parameters for the incellKine test.

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- Rosie

Rosie on August 13, 2021 at 6:06 am

I think dosing is on his website?

- Sam b

Sam b on August 20, 2021 at 8:23 pm

I’ve been on Patterson’s protocol a week. The 4th and 5th days were brutal for my pots! I thought about giving up, but on the 6th day… I started to see a light and now a week in I’m feeling 30% better. My shortness of breath is 95% better, my rashes are gone, my eyes are whiter and my heart rate is starting to go in the 80s when I stand. This has been 17 months of hell after I got covid last year!! I’m hoping within a couple of months I’ll feel like my old self.

- Cort Johnson

Cort Johnson on August 20, 2021 at 9:27 pm

Thanks for sharing your progress Sam and good luck!

Please keep us informed 🙂

31. Cwmcmahan

Cwmcmahan on July 21, 2021 at 4:14 pm

I have sent my bloodwork in, PCP drew it, two vials, one spun, one not. Comes with overnight FedEx envelope and ice pack. Will get results on Friday hopefully. I have ME/CFS, FMS, Dysautonomia, Polyneuropathies, MCAS, etc. I have had a horrendous reaction to the Pfizer vaccine, flattened me, could not stand or walk, ended up in ER, burning neuropathic pain, burning in my skin, at first it was like being stabbed by burning knives in my nerves, worsened brain fog, nonstop headache….ongoing since April 8th. I decided to see if there was any indication of a Long Haul Vaccine reaction and out of interest having many problems with Orthostatic Intolerance and Small Fiber Neuropathy.

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- Birdie

Birdie on July 21, 2021 at 4:40 pm

Could you please share how much the testing costs? Thanks!

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- Cwmcmahan

Cwmcmahan on July 21, 2021 at 5:53 pm

I think it was $420.00

- Cort Johnson

Cort Johnson on July 22, 2021 at 8:08 am

Thankfully – that’s not too bad! Good luck Cwmcmahan.

- LindaB

LindaB on July 21, 2021 at 7:14 pm

OMG, i wish you some degrees of recovery. Many, in fact!!!

But i know in this space…. just a little improvement can be greatly appreciated. All the best.

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- Ughhh

Ughhh on July 21, 2021 at 8:32 pm

Hi Cwmcmahan, I’m trying to understand, you had the test done bc you had a reaction to the vaccine, and Orthostatic Intolerance and small fiber neuropathy, so you are thinking the test results could be positive (for chemokine called CCL5/RANTES) bc maybe that chemokine is involved in your reaction to the vaccine or OI or sfn? Is that correct?

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- A.

A. on July 23, 2021 at 12:41 pm

Ivermectine again, that’s good and this Dr. seems proactive. Like I mentioned before I had long covid for 5 months. It went away after 4 treatments of IV Ozone therapy (a treatment for Lyme and chronic infections) also called 10 Pass Ozone IV

- Cwmcmahan

Cwmcmahan on July 23, 2021 at 9:57 pm

Out of interest and because Patterson says there are also Long Haul Vaxxers from the vaccine itself showing correlation with Long Haulers. That is if I understand correctly. Got worsened neuropathy, unbelievable headaches, increased FMS, brain fog, increased tinnitus, pain after vaccine. Legs wouldn’t work, burning too bad to walk, etc

- Sandra Jensen

Sandra Jensen on July 23, 2021 at 7:51 am

Would love to hear your results. I had horrendous reaction to first AZ vaccine and only slightly less horrendous to second, not sure I’ve recovered from either. Worst crashing since start of ilness 25 years ago (I’ve ME/CFS possibly related to getting South African Tick bite fever).

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- Cort Johnson

Cort Johnson on July 23, 2021 at 3:08 pm

Health Rising’s polls suggested that for some reason the AZ vaccine produced a lot more problems. Hope you fully recover!

- Deb King

Deb King on July 23, 2021 at 10:29 am

WOW! So sorry that some of you are experiencing worsening of ME symptoms after vaccination. Now I understand why my PwME’s Dr has advised no Covid shot for now. Thank you always for sharing your experiences that help us all cope better, patients and caregivers alike. Hope you all recover from this ASAP!

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- Cort Johnson

Cort Johnson on July 23, 2021 at 3:11 pm

Perhaps it’s no surprise to see a lot of different reactions to the vaccines. Most people do OK with the mRNA vaccines, a pretty good subset actually do BETTER after them, and about the same number of people are really having trouble – particularly with the AZ vaccine.

If only we knew who was going to fare how…

- Cwmcmahan

Cwmcmahan on July 23, 2021 at 9:48 pm

Got results from their test. For me, only shows high IL-10 and neutralizing antibodies to the virus from the vaccine. 83.2%. Greater than 30% considered to be positive for SARS CoV2 neutralization antibody whatever that means. I got one Pfizer vaccine and four doctors said no second vaccine for me. Other values for IL 2, 4,6,8,13, GM CSF, sCD40L, CCL3, 4, CCL5 Rantes, TNF Alpha, IFN Gamma, VEGF, not flagged and not high. Normal for IL 10 is less than 5, I am at 21.2. Just adding to the discussion with my results. I think you need to be high on quite a few of these for LH status. Does anyone know anything about IL10 and ME CFS, FMS, SFN, etc.

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- Cwmcmahan

Cwmcmahan on July 23, 2021 at 10:06 pm

Still not sure what my Long Hauler Index score means or if some of the lower values are meaningful. They just aren’t flagged on the results.

- Attek

Attek on July 24, 2021 at 4:56 am

Are you planning to connect with one of their recommended doctors for treatment?

I had a different cytokine panel done by LabCorp. The two cytokines that were high for me were IL12 & IL1 beta, which I see InCellDx test doesn’t measure. But then InCellDx measures cytokines like CCL5 Rantes that LabCorp does not.

My VEGF was low on a separate test.

So I’m not sure if we would belong to separate subgroups that need different treatments.

- Christopher Rudolph

Christopher Rudolph on July 29, 2021 at 6:03 pm

Any Results for now ?

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- Jackie

Jackie on July 29, 2021 at 8:38 pm

My ME/CFS was CAUSED by vaccine injury. I 100000000000000% will NEVER get another vaccine since it has ruined my life and caused my ME/CFS and 25 other accompanying diseases/syndromes.

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- Tony

Tony on September 6, 2021 at 11:30 am

My wife has the same reaction that you had except it was the Moderna vaccine.

Have you found any relief for the burning sensation?

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32. Michael Sieverts

Michael Sieverts on July 21, 2021 at 4:23 pm

I too am very hopeful that this proves to be true, and Patterson has the credentials to support his case. I just wish this didn’t have so many hallmarks of the marketing getting ahead of the science. And, Cort, you did something that increased my skepticism. This sentence: “ABC News just led with a story: ‘EXCLUSIVE: Lab discovers root cause of confusion, fatigue experienced by COVID ‘long haulers‘.'” Did ABC News lead with this story? Or was just the local ABC affiliate? The difference matters (to me at least), and confounding national and local is textbook overselling.

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- Cort Johnson

Cort Johnson on July 21, 2021 at 6:50 pm

Local affiliate I’m pretty sure. I imagine some researchers are aghast at the promotion. On the other hand, it is a way to get the information out. If he’s sure this is it I would argue he has a duty to communicate that given the amount of suffering present. He seems pretty darn confident that he’s on the right track and his and incellDx’s reputation will take a hit if this doesn’t work out. I imagine they did not go into this lightly.

It was too complicated for me to understand but it seemed to me that they did quite a bit to ensure that that protein was present in the monocytes. That was the most unusual and potentially important finding, I think – that the protein was still present over a year later.

I think others have looked for sources of antigen stimulation in ME/CFS. Mark Davis, if I understood what he’s doing, comes to mind, It’s certainly a possibility.

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- Liz

Liz on July 22, 2021 at 11:45 am

Hi

How much does the medicine cost?

- LindaB

LindaB on July 21, 2021 at 7:20 pm

Michael, i agree wholeheartedly. The marketing is rolling out really fast. That’s a flag of sorts!!! I wont say RED but certainly a warning. It is no doubt beneficial in many ways to their research to gather so much data… and all at the expense of the patient! Nice financial model.

We Personally have been down too many of these rabbit holes where a test is purported to give you all the info you need to make you healthy, or tell you what to eat, or tell you what hormones to take, what nutrients you should have etc etc.

to quote the article: the body IS a tricky, tricky thing.

No one test tells it all. No person is an identical replica of another.

Reply

- Cort Johnson

Cort Johnson on July 22, 2021 at 8:17 am

The nice thing about this whole thing is that time really will tell. This isn’t someone out in left field stating I have the answer who’s able to go on and on for years or decades because his hypothesis is never assessed .

Long COVID is a hot topic. Lots of research is being done on it. A lot of light is being shone on this topic and I think we will know one way or the other. There’s no “hiding” here.

33. Perrier

Perrier on July 21, 2021 at 4:33 pm

This is just remarkable and sadly highlights how slow things have moved for CFS. I hope that Dr Davis is having calls with Dr Patterson. We have no time to waste. ME patients live with destroyed lives for years and decades. Can anyone update if there are presently consultations between the OMF teams and those of Dr Patterson. You would imagine there would be .ME is also urgent. Thanks Cory.

Reply

- Perrier

Perrier on July 21, 2021 at 4:39 pm

Thanks Cort!! The geniuses of Stanford Dr Davis and Dr Patterson and Dr Phair are all on this together and will get the Nobel prize!!

Reply

- Cort Johnson

Cort Johnson on July 21, 2021 at 6:51 pm

🙂

- Kathryn Larouche Imler

Kathryn Larouche Imler on July 21, 2021 at 7:14 pm

Thank goodness for Stanford university and their scientists/researchers.

This is good news but I’m always concerned us really long haulers (over 20 years for me) who have ME will be overlooked for so many reasons, some political some financial some legal. We may be swept under the rug again. We still have no “home” under the medical umbrella, well in Canada at least. I’m trying to keep the faith but living with ME and FM for decades it definitely is difficult to remain positive.

- Vlynx

Reply

- Cort Johnson

Cort Johnson on July 22, 2021 at 8:02 am

First that I know of that’s come out and said he/she believes he/she knows the cause AND has a treatment for it.

- Angela

Angela on July 30, 2021 at 1:54 pm

They have said they’re expanding their reach into the UK & beyond.

- lois m young

lois m young on August 21, 2021 at 2:24 pm

They need to look at Agent Orange syndrome that they denied existed for a decade. Gulf War syndrome has the same problem, if they can’t get funding it is easier to act like it isn’t real. For years the medical professionals have refused to believe people suffering. Instead of treating patients they have taken everything that helped us function away. Every country with a descent healthcare system has already put a stop to the asinine mental and physical therapy that patients have had to endure just to get a pain pill. The DEA and NIH are practicing medicine when all they are is drug lords. It is inexcusable for them to make it impossible for us to have any quality of life just so they can get billions of dollars by convincing people that everyone in pain is an addict, taking an aspirin is drug abuse. They are only paid as long as people believe their lies.

Reply

34. Jensy

Jensy on July 21, 2021 at 3:59 pm

Good news for Long COVID.

His background obviously helped him immensely to ‘see’ immediately what was going on, and clearly he now knows how to respond. So good!

The blood vessel damage sounds exactly right to me – about to have my 10th anniversary with this persistent condition.

A toxic trigger for me.

But interestingly I wonder what happens when they extract the viral trigger ME numbers out and treat them.

Maybe they can bring a change to that subset?

Wouldn’t that be awesome.

Then start on the ‘others’ to find their signature.

I have been almost a year now on a calcium channel blocker, cannot take even half the therapeutic dose, but the blood flow change is immediately beneficial whilst it remains in the system. I have long thought I had a misunderstood vascular component, or simply a similar presentation to my fathers condition that interestingly involved toxicity issues format minimum Agent Orange.

Progress – thanks for the info

Reply

- LindaB

LindaB on July 21, 2021 at 7:11 pm

Heh Jensy, were you born AFTER your fathers exposure to Agent Orange? An uncle in my family had a daughter with a very defective heart and his wife also had many miscarriages. He had been involved in a number of war fronts in the medic corps. Even did Japan after the bomb.!!!

Reply

- Jim Zielinski

Jim Zielinski on September 1, 2021 at 5:14 pm

I really hope that I qualify for this testing and treatment. 18 months of hell

- Kathy

Kathy on September 7, 2021 at 4:31 pm

He mentions Lyme but not a word about reactivation of other old dormant viruses such as EBV which us a co-infection to EBV discovered early on in Apr 2020 in Thailand and even earlier in wuhan

- Cort Johnson

Cort Johnson on July 22, 2021 at 8:04 am

I love the blood vessel connection as that fits with several hypotheses regarding ME/CFS. Patterson believes blood vessel dilation occurs which is different from the vasoconstriction that most people think is happening in ME/CFS. I don’t know but I would think that too much dilation would impair blood flows as well. (Could the sympathetic nervous system activation be an attempt to narrow those blood vessels down?) Maybe someone who knows more than me could chime in.

Reply

- Lono

Lono on July 22, 2021 at 4:50 pm

POTS is also linked to a lack of blood vessel dilation. Given the ME/CFS connection to POTS and Orthostatic Intolerance, it is interesting that these phenomena seem to be at either end of the blood vessel dilation spectrum.

If you run a pump on too small a pipe, then depending on the flow rate, the resistance increases non linearly and the “pressure head” or resistance of the pipe becomes the limiting factor for the system. A larger pipe on the same size pump doesn’t cause the fluid volume rate to drop (flow rate will drop though). However, the overall balance of fluid getting to the right part of the network when things aren’t dilated exactly as intended could result in “short circuiting” of different areas in the fluid dynamics sense. But for sure, there are about a million other fluid dynamics phenomena and biological processes at play that mean you don’t see a lot of irrigation consultants invited to join the ACC/ESC.

SNS dysregulation is involved in both types of dilation problem though, so perhaps the end result, and even the cause, has a lot in common.

I’m hopeful this has legs. I appreciate the healthy scepticism though. I think we should not berate the Covid long haulers if they don’t share it though. Remember that the vast majority of them haven’t been around this type of research long enough to develop the wisdom of calibrated enthusiasm. I’m hoping they never have to.

35. Forebearance

Forebearance on July 21, 2021 at 4:08 pm

Wow. Fingers crossed!

Reply

- PamC

PamC on July 24, 2021 at 12:26 pm

Reply to @Lorna, I don’t think its correct to say POTS involves the inability to dilate the blood vessels. Its actually the opposite, drugs like Midodrine are given which help to CONSTRICT the blood vessels and I believe Fludrocortisone does that too, at least these drugs expand the blood volume.

Compression garments are also recommended because they help to constrict the muscles as a result of the autonomic nervous system failing to work properly.

Reply

- Tamara

Tamara on August 9, 2021 at 9:31 am

That’s really strange because I feel better in warm and humid weather which I believe helps to dilated vasel.

Check out Patterson’s attempt to take over a company making a CCR5 inhibitor.

Cameron on July 21, 2021 at 3:33 pm

This is extremely interesting. Thank you, Cort.

Reply

konijn

konijn on July 21, 2021 at 4:31 pm

is this the first past vaccine long hauler development researcher who says it happens? i feel it on top of my ME. like many…

can not follow “the news” so i am asking.

wished i lived there and could get his treatment post vaccin long hauler

Reply

Cort Johnson

Cort Johnson on July 22, 2021 at 8:02 am

First that I know of that’s come out and said he/she believes he/she knows the cause AND has a treatment for it.

Angela

Angela on July 30, 2021 at 1:54 pm

They have said they’re expanding their reach into the UK & beyond.

lois m young

lois m young on August 21, 2021 at 2:24 pm

They need to look at Agent Orange syndrome that they denied existed for a decade. Gulf War syndrome has the same problem, if they can’t get funding it is easier to act like it isn’t real. For years the medical professionals have refused to believe people suffering. Instead of treating patients they have taken everything that helped us function away. Every country with a descent healthcare system has already put a stop to the asinine mental and physical therapy that patients have had to endure just to get a pain pill. The DEA and NIH are practicing medicine when all they are is drug lords. It is inexcusable for them to make it impossible for us to have any quality of life just so they can get billions of dollars by convincing people that everyone in pain is an addict, taking an aspirin is drug abuse. They are only paid as long as people believe their lies.

Reply

Jensy

Jensy on July 21, 2021 at 3:59 pm

Good news for Long COVID.

His background obviously helped him immensely to ‘see’ immediately what was going on, and clearly he now knows how to respond. So good!

The blood vessel damage sounds exactly right to me – about to have my 10th anniversary with this persistent condition.

A toxic trigger for me.

But interestingly I wonder what happens when they extract the viral trigger ME numbers out and treat them.

Maybe they can bring a change to that subset?

Wouldn’t that be awesome.

Then start on the ‘others’ to find their signature.

I have been almost a year now on a calcium channel blocker, cannot take even half the therapeutic dose, but the blood flow change is immediately beneficial whilst it remains in the system. I have long thought I had a misunderstood vascular component, or simply a similar presentation to my fathers condition that interestingly involved toxicity issues format minimum Agent Orange.

Progress – thanks for the info

Reply

LindaB

LindaB on July 21, 2021 at 7:11 pm

Heh Jensy, were you born AFTER your fathers exposure to Agent Orange? An uncle in my family had a daughter with a very defective heart and his wife also had many miscarriages. He had been involved in a number of war fronts in the medic corps. Even did Japan after the bomb.!!!

Reply

Jim Zielinski

Jim Zielinski on September 1, 2021 at 5:14 pm

I really hope that I qualify for this testing and treatment. 18 months of hell

Kathy

Kathy on September 7, 2021 at 4:31 pm

He mentions Lyme but not a word about reactivation of other old dormant viruses such as EBV which us a co-infection to EBV discovered early on in Apr 2020 in Thailand and even earlier in wuhan

Cort Johnson

Cort Johnson on July 22, 2021 at 8:04 am

I love the blood vessel connection as that fits with several hypotheses regarding ME/CFS. Patterson believes blood vessel dilation occurs which is different from the vasoconstriction that most people think is happening in ME/CFS. I don’t know but I would think that too much dilation would impair blood flows as well. (Could the sympathetic nervous system activation be an attempt to narrow those blood vessels down?) Maybe someone who knows more than me could chime in.

Reply

Lono

Lono on July 22, 2021 at 4:50 pm

POTS is also linked to a lack of blood vessel dilation. Given the ME/CFS connection to POTS and Orthostatic Intolerance, it is interesting that these phenomena seem to be at either end of the blood vessel dilation spectrum.

If you run a pump on too small a pipe, then depending on the flow rate, the resistance increases non linearly and the “pressure head” or resistance of the pipe becomes the limiting factor for the system. A larger pipe on the same size pump doesn’t cause the fluid volume rate to drop (flow rate will drop though). However, the overall balance of fluid getting to the right part of the network when things aren’t dilated exactly as intended could result in “short circuiting” of different areas in the fluid dynamics sense. But for sure, there are about a million other fluid dynamics phenomena and biological processes at play that mean you don’t see a lot of irrigation consultants invited to join the ACC/ESC.

SNS dysregulation is involved in both types of dilation problem though, so perhaps the end result, and even the cause, has a lot in common.

I’m hopeful this has legs. I appreciate the healthy scepticism though. I think we should not berate the Covid long haulers if they don’t share it though. Remember that the vast majority of them haven’t been around this type of research long enough to develop the wisdom of calibrated enthusiasm. I’m hoping they never have to.

Forebearance

Forebearance on July 21, 2021 at 4:08 pm

Wow. Fingers crossed!

Reply

PamC

PamC on July 24, 2021 at 12:26 pm

Reply to @Lorna, I don’t think its correct to say POTS involves the inability to dilate the blood vessels. Its actually the opposite, drugs like Midodrine are given which help to CONSTRICT the blood vessels and I believe Fludrocortisone does that too, at least these drugs expand the blood volume.

Compression garments are also recommended because they help to constrict the muscles as a result of the autonomic nervous system failing to work properly.

Reply

Tamara

Tamara on August 9, 2021 at 9:31 am

That’s really strange because I feel better in warm and humid weather which I believe helps to dilated vasel.

George

George on July 21, 2021 at 4:09 pm

Very interesting and cost effective! What is his his protocol, i would try it . Maraviroc seems problematic to get it, Statins and Ivermectin are easy available.

Reply

Cort Johnson

Cort Johnson on July 22, 2021 at 8:07 am

One thing I didn’t see was dosing. I also couldn’t find out the parameters for the incellKine test.

Reply

Rosie

Rosie on August 13, 2021 at 6:06 am

I think dosing is on his website?

Sam b

Sam b on August 20, 2021 at 8:23 pm

I’ve been on Patterson’s protocol a week. The 4th and 5th days were brutal for my pots! I thought about giving up, but on the 6th day… I started to see a light and now a week in I’m feeling 30% better. My shortness of breath is 95% better, my rashes are gone, my eyes are whiter and my heart rate is starting to go in the 80s when I stand. This has been 17 months of hell after I got covid last year!! I’m hoping within a couple of months I’ll feel like my old self.

Cort Johnson

Cort Johnson on August 20, 2021 at 9:27 pm

Thanks for sharing your progress Sam and good luck!

Please keep us informed 🙂

Cwmcmahan

Cwmcmahan on July 21, 2021 at 4:14 pm

I have sent my bloodwork in, PCP drew it, two vials, one spun, one not. Comes with overnight FedEx envelope and ice pack. Will get results on Friday hopefully. I have ME/CFS, FMS, Dysautonomia, Polyneuropathies, MCAS, etc. I have had a horrendous reaction to the Pfizer vaccine, flattened me, could not stand or walk, ended up in ER, burning neuropathic pain, burning in my skin, at first it was like being stabbed by burning knives in my nerves, worsened brain fog, nonstop headache….ongoing since April 8th. I decided to see if there was any indication of a Long Haul Vaccine reaction and out of interest having many problems with Orthostatic Intolerance and Small Fiber Neuropathy.

Reply

Birdie

Birdie on July 21, 2021 at 4:40 pm

Could you please share how much the testing costs? Thanks!

Reply

Cwmcmahan

Cwmcmahan on July 21, 2021 at 5:53 pm

I think it was $420.00

Cort Johnson

Cort Johnson on July 22, 2021 at 8:08 am

Thankfully – that’s not too bad! Good luck Cwmcmahan.

LindaB

LindaB on July 21, 2021 at 7:14 pm

OMG, i wish you some degrees of recovery. Many, in fact!!!

But i know in this space…. just a little improvement can be greatly appreciated. All the best.

Reply

Ughhh

Ughhh on July 21, 2021 at 8:32 pm

Hi Cwmcmahan, I’m trying to understand, you had the test done bc you had a reaction to the vaccine, and Orthostatic Intolerance and small fiber neuropathy, so you are thinking the test results could be positive (for chemokine called CCL5/RANTES) bc maybe that chemokine is involved in your reaction to the vaccine or OI or sfn? Is that correct?

Reply

A.

A. on July 23, 2021 at 12:41 pm

Ivermectine again, that’s good and this Dr. seems proactive. Like I mentioned before I had long covid for 5 months. It went away after 4 treatments of IV Ozone therapy (a treatment for Lyme and chronic infections) also called 10 Pass Ozone IV

Cwmcmahan

Cwmcmahan on July 23, 2021 at 9:57 pm

Out of interest and because Patterson says there are also Long Haul Vaxxers from the vaccine itself showing correlation with Long Haulers. That is if I understand correctly. Got worsened neuropathy, unbelievable headaches, increased FMS, brain fog, increased tinnitus, pain after vaccine. Legs wouldn’t work, burning too bad to walk, etc

Sandra Jensen

Sandra Jensen on July 23, 2021 at 7:51 am

Would love to hear your results. I had horrendous reaction to first AZ vaccine and only slightly less horrendous to second, not sure I’ve recovered from either. Worst crashing since start of ilness 25 years ago (I’ve ME/CFS possibly related to getting South African Tick bite fever).

Reply

Cort Johnson

Cort Johnson on July 23, 2021 at 3:08 pm

Health Rising’s polls suggested that for some reason the AZ vaccine produced a lot more problems. Hope you fully recover!

Deb King

Deb King on July 23, 2021 at 10:29 am

WOW! So sorry that some of you are experiencing worsening of ME symptoms after vaccination. Now I understand why my PwME’s Dr has advised no Covid shot for now. Thank you always for sharing your experiences that help us all cope better, patients and caregivers alike. Hope you all recover from this ASAP!

Reply

Cort Johnson

Cort Johnson on July 23, 2021 at 3:11 pm

Perhaps it’s no surprise to see a lot of different reactions to the vaccines. Most people do OK with the mRNA vaccines, a pretty good subset actually do BETTER after them, and about the same number of people are really having trouble – particularly with the AZ vaccine.

If only we knew who was going to fare how…

Cwmcmahan

Cwmcmahan on July 23, 2021 at 9:48 pm

Got results from their test. For me, only shows high IL-10 and neutralizing antibodies to the virus from the vaccine. 83.2%. Greater than 30% considered to be positive for SARS CoV2 neutralization antibody whatever that means. I got one Pfizer vaccine and four doctors said no second vaccine for me. Other values for IL 2, 4,6,8,13, GM CSF, sCD40L, CCL3, 4, CCL5 Rantes, TNF Alpha, IFN Gamma, VEGF, not flagged and not high. Normal for IL 10 is less than 5, I am at 21.2. Just adding to the discussion with my results. I think you need to be high on quite a few of these for LH status. Does anyone know anything about IL10 and ME CFS, FMS, SFN, etc.

Reply

Cwmcmahan

Cwmcmahan on July 23, 2021 at 10:06 pm

Still not sure what my Long Hauler Index score means or if some of the lower values are meaningful. They just aren’t flagged on the results.

Attek

Attek on July 24, 2021 at 4:56 am

Are you planning to connect with one of their recommended doctors for treatment?

I had a different cytokine panel done by LabCorp. The two cytokines that were high for me were IL12 & IL1 beta, which I see InCellDx test doesn’t measure. But then InCellDx measures cytokines like CCL5 Rantes that LabCorp does not.

My VEGF was low on a separate test.

So I’m not sure if we would belong to separate subgroups that need different treatments.

Christopher Rudolph

Christopher Rudolph on July 29, 2021 at 6:03 pm

Any Results for now ?

Reply

Jackie

Jackie on July 29, 2021 at 8:38 pm

My ME/CFS was CAUSED by vaccine injury. I 100000000000000% will NEVER get another vaccine since it has ruined my life and caused my ME/CFS and 25 other accompanying diseases/syndromes.

Reply

Tony

Tony on September 6, 2021 at 11:30 am

My wife has the same reaction that you had except it was the Moderna vaccine.

Have you found any relief for the burning sensation?

Reply

Michael Sieverts

Michael Sieverts on July 21, 2021 at 4:23 pm

I too am very hopeful that this proves to be true, and Patterson has the credentials to support his case. I just wish this didn’t have so many hallmarks of the marketing getting ahead of the science. And, Cort, you did something that increased my skepticism. This sentence: “ABC News just led with a story: ‘EXCLUSIVE: Lab discovers root cause of confusion, fatigue experienced by COVID ‘long haulers‘.'” Did ABC News lead with this story? Or was just the local ABC affiliate? The difference matters (to me at least), and confounding national and local is textbook overselling.

Reply

Cort Johnson

Cort Johnson on July 21, 2021 at 6:50 pm

Local affiliate I’m pretty sure. I imagine some researchers are aghast at the promotion. On the other hand, it is a way to get the information out. If he’s sure this is it I would argue he has a duty to communicate that given the amount of suffering present. He seems pretty darn confident that he’s on the right track and his and incellDx’s reputation will take a hit if this doesn’t work out. I imagine they did not go into this lightly.

It was too complicated for me to understand but it seemed to me that they did quite a bit to ensure that that protein was present in the monocytes. That was the most unusual and potentially important finding, I think – that the protein was still present over a year later.

I think others have looked for sources of antigen stimulation in ME/CFS. Mark Davis, if I understood what he’s doing, comes to mind, It’s certainly a possibility.

Reply

Liz

Liz on July 22, 2021 at 11:45 am

Hi

How much does the medicine cost?

LindaB

LindaB on July 21, 2021 at 7:20 pm

Michael, i agree wholeheartedly. The marketing is rolling out really fast. That’s a flag of sorts!!! I wont say RED but certainly a warning. It is no doubt beneficial in many ways to their research to gather so much data… and all at the expense of the patient! Nice financial model.

We Personally have been down too many of these rabbit holes where a test is purported to give you all the info you need to make you healthy, or tell you what to eat, or tell you what hormones to take, what nutrients you should have etc etc.

to quote the article: the body IS a tricky, tricky thing.

No one test tells it all. No person is an identical replica of another.

Reply

Cort Johnson

Cort Johnson on July 22, 2021 at 8:17 am

The nice thing about this whole thing is that time really will tell. This isn’t someone out in left field stating I have the answer who’s able to go on and on for years or decades because his hypothesis is never assessed .

Long COVID is a hot topic. Lots of research is being done on it. A lot of light is being shone on this topic and I think we will know one way or the other. There’s no “hiding” here.

Perrier

Perrier on July 21, 2021 at 4:33 pm

This is just remarkable and sadly highlights how slow things have moved for CFS. I hope that Dr Davis is having calls with Dr Patterson. We have no time to waste. ME patients live with destroyed lives for years and decades. Can anyone update if there are presently consultations between the OMF teams and those of Dr Patterson. You would imagine there would be .ME is also urgent. Thanks Cory.

Reply

Perrier

Perrier on July 21, 2021 at 4:39 pm

Thanks Cort!! The geniuses of Stanford Dr Davis and Dr Patterson and Dr Phair are all on this together and will get the Nobel prize!!

Reply

Cort Johnson

Cort Johnson on July 21, 2021 at 6:51 pm

🙂

Kathryn Larouche Imler

Kathryn Larouche Imler on July 21, 2021 at 7:14 pm

Thank goodness for Stanford university and their scientists/researchers.

This is good news but I’m always concerned us really long haulers (over 20 years for me) who have ME will be overlooked for so many reasons, some political some financial some legal. We may be swept under the rug again. We still have no “home” under the medical umbrella, well in Canada at least. I’m trying to keep the faith but living with ME and FM for decades it definitely is difficult to remain positive.

Vlynx

Vlynx on July 22, 2021 at 2:01 am

Oh dear. I had high hopes for this theory & approach but when I read of the extraordinarily high treatment response he’s claiming my skeptic sense was alerted. Then, when I read the 3rd drug in his treatment regimen is ivermectin, I deflated. Ivermectin’s “antiviral” properties only occur in vitro at concentrations far beyond those achievable in the bloodstream without severe toxicity. Of course this isn’t an antiviral treatment per se so maybe. maybe he has come up with a plausible mechanism for it to do something useful in the tiny amounts absorbed through the gut (which is where it is so effective treating worms & parasites).

However, ivermectin has bern a magnet for irrational hope in COVID-19 treatment and prevention, causing clinicians to throw out common sense out of desperation need for a saving medication. See the devastating news about how the largest ivermectin clinical trial to date, done in Egypt, is also likely the largest case of scientific fraud perpetrated ever (worse than PACE!). Because it was such a large trial, with amazingly positive results, it heavily skewed the 2 recent meta-analyses done with ivermectin for COVID-19.

The study was a preprint, not peer-reviewed. Medicine has been willing to cut too many corners in looking for answers in this pandemic, understandably. We need to guard against the same in ME/CFS. I do hope Patterson is on the right track. It would be wonderful. But, let’s do the work before selling it.

About the now retracted ivermectin study: https://www.google.com/amp/s/www.sciencealert.com/ivermectin-study-controversy-is-a-huge-wake-up-call-for-fraud-in-covid-19-science/amp

jKat

jKat on November 3, 2021 at 4:29 pm

In response to Vlynx…. there have been some virologists form the beginning that have questioned the classification of this pathogen as a “virus” for a couple of reasons. Firstly, it does not behave as a virus. Viruses typically have lots of mucous associated with them, while this one is mostly “dry”. They also found it very curious that it responded so well to anti-parasitic drugs. I’m not a doctor, but it’s food for thought….

Carolyn

Carolyn on July 21, 2021 at 5:35 pm

Good for Covid long-haulers, but please, please, please, ME/CFS patients need an effective treatment even more! We have waited soooo long and continue to lose years/decades of our lives.

Reply

Cwmcmahan

Cwmcmahan on July 21, 2021 at 5:53 pm

I think it was $420.00

Reply

Alexis

Alexis on July 21, 2021 at 6:10 pm

Hi – I have long Covid. A lot more of us than you may think do very much understand the connection to ME/CFS. We see you and want us to all work together. We appreciate your advice and experiences.

I’m very sorry to say that while many in the Long Covid community are closely following IncellDx, an equal number of people are very skeptical. I think they have uncovered some interesting ideas but I don’t think it’s the solution. I have taken Ivermectin and it did nothing at all. For some it helped a few symptoms here and there. Others in my support group have tried statins, most without any real results. Statins did help one person quite a bit but they had more lung/heart involvement it seems. Maraviroc made one person worse. All these meds have been very hard to access. They have been also using prednisone, or at least they were at one point, which is concerning to a lot of us if we don’t know whether the immune system needs to be ramped up or calmed down. Obviously it’s different for everyone and maybe some have been helped, but do be wary. I don’t know of any people reporting success with this even though they keep saying they’ve had so much success. I don’t think that Bruce Patterson has malicious intentions. It might be one piece of the puzzle. Maybe they will keep looking and find the real answer. I will say Bruce is one of the few looking at viral persistence. Viral persistence doesn’t necessarily exclude ME/CFS either… what if it’s all viral persistence of a different sort, but in the tissue not the blood so it’s harder to find? I don’t know the answer just throwing it out there. Also any research that explores vascular issues is great I think because there really seems to be something to that. And that they want to do research at all and explore Lyme and other conditions is excellent.

Anyway. Just popping by to say if you’re worried this will solve long Covid and you’ll be left in the dust, I doubt it will. We will be there in the dust with you. Fingers crossed for us all !!

Reply

LindaB

LindaB on July 21, 2021 at 7:32 pm

Hi Alexis, i would like to say ‘welcome’ to the group but really i am sure you probably did not previously know of its existence and if asked, i am certain you would say, you would NOT have wanted to join. Sadly…. welcome.

Thanks for you perspective.

There may be one ‘benefit’ to research in the Long Haul arena in that the virus that mediated the illness is a known/identified virus. Seems to me that might make the investigations more homogeneous. I am not sure of that.

Within the ME/CFS Fibro arena the problems have initially presented from various afflictions and breakdowns, and resultant longstanding failures of the body to perform efficiently have resulted in a corollary of other symptoms to complicate the investigations.

I wish you luck in resolving your issues. i hope if you are fortunate in that regard that you will still have some interest in those who are left lingering and looking to get their lives back.

Reply

Cort Johnson

Cort Johnson on July 23, 2021 at 3:37 pm

Thanks very much for giving your perspective Alexis. I hope we all emerge from the dust together! 🙂

Reply

Sylvia

Sylvia on July 25, 2021 at 4:06 am

Thanks Alexis. I appreciate your kindness and sensitivity. Many people with ME are automatically averse to Long Covid people because it’s like an instant replay of PTSD and the decades of neglect. I get the feeling that Bruce has very honorable intentions but we could all do without Dr Yo – aka Dr Ram Yogendra – bragging about how much money they will make. It is in very poor taste and he seems oblivious to the many people living in poverty because of their disability. Sadly, it seems indicative of human nature that a person can’t fully understand something until they have themselves experienced it.

Reply

Bottsie

Bottsie on July 21, 2021 at 7:11 pm

Oh, boy…this sounds so promising! I’m wondering if Dr. Patterson is comparing notes with Ron Davis at all, since they are both from Stanford? Also wondering if the drugs Patterson lists are showing promise in Ron Davis’ yeast experiments of all FDA approved drugs? Ivermectin is very similar (but not exactly the same) to the Suramin Dr. Robert Naviaux thinks will treat not only ME/CFS, but ASD as well (trials scheduled for 2022). I wonder if the other two drugs Patterson suggests fills in the gap between Ivermectin and Suramin? Also, this suggests a possible 4-6 week possible treatment period. Will that be a one time treatment?

Still so many questions, but some hope to hold onto… Prayers said and EVERYTHING crossed!! XX ? XX

Reply

Cort Johnson

Cort Johnson on July 22, 2021 at 8:22 am

Someone asked on the one of the interviews if he’d talked to Ron. He said he hadn’t but would be happy to. He also said he’s extremely busy and is doing nothing but long COVID from early in the morning to late at night. incellDx is certainly taking on a lot. I hope Ron can chat with him, though.

I don’t see how the monocyte issue fits with ME/CFS. He’s found the antigen to the coronavirus in monocytes in patients over a year and a half later. Could those monocytes last for the decades that people have ME/CFS?

I’m just a laymen but I would think it would have to be something else….

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Bottsie

Bottsie on July 22, 2021 at 7:31 pm

Another good question, Cort. I’d also like to know what Dr. Bhupesh Prusty thinks of all this, since he believes EBV (my trigger) reactivates other viruses (probably in the body since childhood). I don’t fully understand all of this, but I wonder if reactivated viruses behave differently than a new virus entering the body. So many questions…hoping we have some mind-blowing answers (in the form of treatments) soon.

sunie

sunie on July 22, 2021 at 10:26 pm

Bottsie, i am with you re: wonder what Prusty Bhupesh thoughts are.

https://mobile.twitter.com/bhupeshprusty?lang=en

in addition, with ivermectin being anti parasites, wonder if Dr. Alan McDonald, a hospital pathologist who used probes that showed spirochetes in MS brain samples, as well as tiny worms in cfs, and in AD brain samples.

https://durayresearch.wordpress.com/about-2/background/curriculum-vitae-alan-b-macdonald/

but i do not know if ivermectin even passes into brain– or if ivermectin will show up to have currently unknown benefits/effects in addition to being anti- parasitic.

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Frank

Frank on July 21, 2021 at 7:13 pm

Don’t know if it’s any good but the “FLCCC Alliance” has also come up with a Long Haul COVID-19 Syndrome protocol also.

https://covid19criticalcare.com/covid-19-protocols/i-recover-protocol/

Still hoping for a ME/CFS protocol that works…

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c

c on July 22, 2021 at 1:41 pm

its the same protocol

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Gail Nardi

Gail Nardi on July 21, 2021 at 8:16 pm

Hi Cort, once again thank you for all your consistently amazing work!

Your articles have given me rays of hope many times. The past 15 years of illness have been difficult and at times a little hope has been the only thing that has kept me going.

I’m sending another small donation to help support you as you work for us all. I know every little bit helps.

Cheers,

Gail

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Cort Johnson

Cort Johnson on July 23, 2021 at 3:40 pm

Thanks Gail! In case some people don’t know. Health Rising is community supported – you are the reason we are online 🙂

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Wayne Brissett

Wayne Brissett on July 21, 2021 at 11:50 pm

I would like to see this type of research conducted for people whose ME/CFS was triggered by Epstein Barr virus. We have suffered for DECADES.

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Cort Johnson

Cort Johnson on July 22, 2021 at 8:23 am

I imagine that would be top of Patterson’s list of things to check.

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sunie

sunie on July 22, 2021 at 10:49 pm

@Wayne Brissett

if the following interests you

re: epstein barr and hhv

“Article

Frequent HHV-6 reactivation in multiple sclerosis (MS) and chronic fatigue syndrome (CFS) ”

at site:

https://www.researchgate.net/publication/12578403_Frequent_HHV-6_reactivation_in_multiple_sclerosis_MS_and_chronic_fatigue_syndrome_CFS_patients

and

“Activation of human herpesviruses 6 and 7 in patients with chronic fatigue syndrome”

at site

https://www.researchgate.net/publication/6529087_Activation_of_human_herpesviruses_6_and_7_in_patients_with_chronic_fatigue_syndrome

and

“EXPLAINING ME/CFS: PRUSTY NAVIAUX STUDY TIES INFECTIONS TO ENERGY BREAKDOWNS”

APRIL 27, 2020 / KARMAN KREGLOE / UNCATEGORIZED

Originally published by Cort Johnson | Apr 26, 2020 | HealthRising

at site

https://solvecfs.org/explaining-me-cfs-prusty-naviaux-study-ties-infections-to-energy-breakdowns/

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RonP

RonP on July 22, 2021 at 1:09 am

“Success consists of going from failure to failure without loss of enthusiasm.” – Winston Churchill

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Cort Johnson

Cort Johnson on July 23, 2021 at 3:41 pm

That is like the theme for ME/CFS. What a great quote – thanks!

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Vlynx

Vlynx on July 22, 2021 at 2:30 am

If anyone wants to learn more about the amazing details behind the large retracted Egyptian ivermectin study the preprint of which was used in recent COVID-19 meta-analyses, thus Medium article is great. I mention this in a comment above somewhere. Of course, it’s somewhat tangential to this discussion but should, once again, stir our inner skeptics about research that sounds too good to be true.

https://gidmk.medium.com/is-ivermectin-for-covid-19-based-on-fraudulent-research-5cc079278602

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Nikki

Nikki on July 22, 2021 at 4:20 am

I have been following dr mobeen recently who also says he has seen great improvements in his patients with ivermectin. He is in no way affiliated with it and is not profiteering from it either as you are unable to get him to treat you and he is just putting his opinions out there in chit chat videos. Youtube have removed over 50 of his videos that have mentioned ivermectin in it and its clear big pharma have a hand in this. He also says that there is a huge pushback with big pharma because if word gets out that its so successful it will hinder their hugely profitable vaccine programme and they are actively trying to debunk these studies on ivermectin. There is a large group of doctors and scientists who have organised a world ivermectin day to try and get word out which is on the 24th july i think. With all that in mind its difficult to know what to believe and im not sure if this article you have shared is big pharma debunking it or not. At the moment though my faith is in dr mobeen and his fellow doctor friends

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Eliza

Eliza on July 25, 2021 at 5:44 pm

Nikki I completely agree.

It is shocking how much of the good data and studies on Ivermectin have been ignored.

Why is the person above going on and on about the Egyptian study but not mentioning the Mexico City study? Which showed overwhelming evidence of it’s efficacy when given early. Or the other studies which have been peer reviewed and found to be very convincing. Of course there is some bad science, that doesn’t mean it’s a bad drug. It’s one of the most prescribed drugs in the world apparently, because of it’s usefulness with parasites, scabies and river blindness. Generally well tolerated.

And I have personal experience of taking it.

I have both M.E and Long Covid.

Ivermectin did not cure either BUT it did save me from having to go to hospital when I experienced either a reinfection or a strange inflammatory episode during my Covid long haul, where my lungs felt like they were rapidly filling with fluid.

My breathing was very laboured and my oximeter showed decreased oxygen saturation. I took one pea-sized amount and within an hour my lungs were back to normal pretty much and I could breathe easily again. It felt like a small miracle.

So for acute infections where it’s so very important to reduce the inflammation, I believe Ivermectin must be very effective, providing it’s given early enough. It really is an incredible anti-inflammatory. And as we all know, it’s the inflammation that gets you with Covid.

For my long haul general symptoms, it does wipe them out temporarily (because it’s such a good anti-inflammatory) but then they come back once it’s worn off.

And when I take high doses it does also make my lymph nodes ache badly, and gives me unpleasant after effects. But I still would always take it if I felt the sadly-now-familiar sensation of my lungs closing up.

Nikki

Nikki on July 22, 2021 at 4:25 am

https://bird-group.org/world-ivermectin-day/ this is the link for the uk group of world ivermectin day

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Jessica Bardzil

Jessica Bardzil on July 22, 2021 at 6:16 am

Very interesting , . I in two and half month ongoing deterioration of ME since second jab, had been improving a bit before, much more disabled and ill now.

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Syd

Syd on July 22, 2021 at 7:38 am

Super interesting and super hopeful. I think I have a kind of post-vaccine inflammatory syndrome. Thank you!

Ivermectin is showing up in studies now: https://journals.lww.com/americantherapeutics/fulltext/2021/06000/review_of_the_emerging_evidence_demonstrating_the.4.aspx

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Herbert Renz-Polster

Herbert Renz-Polster on July 22, 2021 at 12:21 pm

What an interesting story! In fact, this may later be seen as one of the most fascinating stories in Long Covid research. I would suggest: A story in which a researcher was right for the wrong reasons.

First of all, there are quite a few reasons to be critical of Patterson´s work and claims about Long Covid:

a) it is based on really limited analyses of 46 patients, according to which some SARS-CoV-2 protein remnants seem to persist in certain immune cells – not very surprising and already suggested by other authors

b) his therapy for Long Covid (inhibition of CCL5) was actually first developed for acute severe COVID-19 – based on work which shows that CCL5 is vastly elevated in acute COVID-19 (with the highest levels seen in the most severe patients).

c) now he suggests CCL5 inhibition for Long Covid – from which we know that the risk of developing symptoms has nothing to do with severity of disease…

d) … he builds this suggestion on a rather tortuous hypothesis with several assumptions in which a subset of monocytes is dysfunctional and thus trigger endothelial dysfunction through VGEF. Interestingly, many of the pathomechanisms suggested by other teams about the inception of Long Covid do not appear in this explanation, like disturbed immune regulation, autoimmunity, neuroinflammation…

e) And yet another assumption shared by other researchers is not part of his hypothesis: that indeed a subset of Long Covid is a form of ME/CFS (in fact, Patterson believes Long Covid is a separate entity)

f) with his hypothesis on Long Covid he does not proceed to first publish a few results of some pilot trial and then proceed to larger clinical trials – instead, he first reports to be able to accurately diagnose Long Covid patients – and to have healed thousands of them.

This is clearly unusual. A researcher has a hypothesis based on a small study published as a preprint – and begins to diagnose and treat thousands of patients in different continents with a homespun therapy not yet evaluated in a “real” clinical trial. Hmmm

Many reasons to say: possibly fishy.

Yet, I believe in Bruce Patterson´s therapy. For Bruce Patterson so much is at stake and he is so much part of the scientific community that his claims of successful treatment just cannot be made up – they must be real. Also, he is experienced enough that he will be able to tell that he is actually observing rather strong treatment effects.

So the real and better question for me is: does his therapy possibly work for different reasons than he assumes?

And indeed there is evidence that this may be the case:

Take the mode of action of his CCL5 blocker, Maraviroc. Dr. Patterson suggests that Maraviroc influences some perfusion related downstream effects from dysregulated non classical monocytes (their job is to gobble up viral antigens).

.

But in fact Maraviroc has much broader biological effects.

For one, Maraviroc may indeed be a potent glial modulator with neuroprotective abilities. It has been shown that Maraviroc acts on the CCL5 receptors on astrocytes and microglia and may tune down astroglial activation and excitotoxicity ((https://www.nature.com/articles/nrneurol.2015.248)) ((https://pubmed.ncbi.nlm.nih.gov/24047524/)). Also, Maraviroc is able to attenuate the infiltration of T Cells into the Central Nervous System ((https://www.jimmunol.org/content/202/12/3412)). Indeed, in mouse models, CCL5 blockade has been shown to improve recovery after traumatic brain injury ((https://pubmed.ncbi.nlm.nih.gov/33453212/)) and stroke ((https://www.sciencedirect.com/science/article/pii/S00928674193)); it has also been suggestes as therapeutic intervention in several inflammatory brain disorders ((https://pubmed.ncbi.nlm.nih.gov/24047524/)).

Also, and very interestingly, CCL5 may play a role in the control of endogenous infections or reactivations in the CNS ((https://www.nature.com/articles/nrneurol.2015.248)) – the latter which may be interesting as there seems to be a fair amount of EBV reactivation going on in Long Covid. ((https://www.mdpi.com/2076-0817/10/6/763))

So again, the treatment success that Dr. Patterson reports may be real – but for other reasons than suggested.

In fact, there are suggestions from his own reports that his ideas about how Long Covid symptoms come about and how Maraviroc is supposed to fix them may not be plausible: He claims that his therapy also works against vaccine induced Long Covid. Yet, in this category the key element of his hypothesis (dysfunctionmal non classical monocytes) should not play a role (there is just no viral garbage to be gobbled up).

So again, maybe Dr. Patterson (who first came out with a unifying theory about “cytokine storm” in acute COVID-19 based on elevated CCL5 and then created a unifying theory on Long Covid, again based on elevated CCL5) just stumbled across something most welcome for the therapy of neuroinflammatory disorders like Long Covid (and/or ME/CFS): a potent glial modulator.

Luck happens?

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sunie

sunie on July 23, 2021 at 2:41 am

wonder if Maraviroc or Pederson’s combination therapy could be trialed on similar mice to the mice in this unique study ( fibromyalgia)

featured in uk’s weekly research round-up

at site

https://meassociation.org.uk/2021/

https://meassociation.org.uk/2021/07/research-passive-transfer-fibromyalgia/

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M

M on July 25, 2021 at 1:39 am

@Herbert

Yes!

Very good observations!

I also wonder what are the ‘side effects’?

This may help elucidate what is the mechanism at work, etc.

– I view the use of the term side-effects, much like ‘paradoxes’, it’s a reflection of the medical culture that creates/uses it. So that it is inherent to how the substances is interacting with different systems in the body

Because it doesn’t fit with their view of the body, it gets labeled as ‘side effect’

Etc –

Rick

Rick on July 22, 2021 at 2:45 pm

This is very interesting and seems promising. I hope they can find some treatment regimes that work.

What’s perhaps even more hopeful is that apparently they are easily able to differentiate long haulers from controls. Even if no silver bullet treatment is found, possibly at some point there could be some test to identify ME/CFS reliably. That in itself would be a huge step forward.

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Jilly in AZ

Jilly in AZ on July 22, 2021 at 4:41 pm

“An antiretroviral drug used … to treat HIV.” Interesting, because the only treatment, so far, that affected me significantly over the years was another antiviral drug developed to treat HIV: CIDOFOVIR.

I did 9 rounds of IV Cidofovir with the late Dr. L. Martin Lerner in Michigan. Within 6 months, I was able to RUN 5+ MILES on a treadmill.

Unfortunately, a devastating life event and subsequent divorce uprooted my world and the heartbreaking stress, in addition to me overdoing it at the gym caused me to relapse. It’s been 5 years since then, and I have a hard time just walking up the stairs; I’m completely crashed.

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Sylvia

Sylvia on July 25, 2021 at 4:28 am

Sorry to hear that story Jilly. I wish I were surprised. If ME had been labelled as a potentially fatal immune disorder such as HIV, we would be far ahead of the game at this point with antiretroviral therapies and/or medications like Ampligen. Instead, we hear about heartbreaking stories such as yours and learn of the suicides that have plagued this community for decades. Those in pain and distress are unable to access medications to relieve that pain and are relegated to “look on the bright side” enterprises when their marriages fail and they lose everything that has kept their lives on an even keel.

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Rebecca

Rebecca on July 22, 2021 at 5:12 pm

This sounds impressive, but I will be STUNNED if it pans out.

I bet the whole thing falls apart with the first randomized, placebo-controlled trial.

It reminds me of the whole “chronic Lyme“ scheme, which is based on virtually no science. Patterson and the LLMDs even use one of the same drugs off-label: statins.

Patterson‘s for-profit lab reminds me of IGeneX, which says that EVERYONE has Lyme disease.

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Christina

Christina on July 23, 2021 at 12:45 pm

Do those alternative tests really say everyone has Lyme? I was told to do that test by a ND.

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Caleb

Caleb on July 22, 2021 at 7:06 pm

There are some studies of ME/CFS where the cytokines do match up more closely:

Lechner et al. (2017). Impact of Rantes from jawbone on Chronic Fatigue Syndrome. https://pubmed.ncbi.nlm.nih.gov/28685531/

RCT. HC=19, CFS=21

“FDOJ cohorts showed a 30-fold mean overexpression of RANTES and a 20-fold overexpressed level of FGF-2 when compared to healthy controls.”

Hardcastle et al. (2015). Serum Immune Proteins in Moderate and Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis Patients

https://doi.org/10.7150/ijms.12399

HC=22, moderate CFS=22, severe CFS=19.

“IL-1β was significantly reduced in severe compared with moderate CFS/ME patients. IL-6 was significantly decreased in moderate CFS/ME patients compared with healthy controls and severe CFS/ME patients. RANTES was significantly increased in moderate CFS/ME patients compared to severe CFS/ME patients. Serum IL-7 and IL-8 were significantly higher in the severe CFS/ME group compared with healthy controls and moderate CFS/ME patients. IFN-γ was significantly increased in severe CFS/ME patients compared with moderately affected patients.” (Same research organisation as Corbitt et al., 2019)

Yang et al. (2019). The clinical value of cytokines in chronic fatigue syndrome

https://doi.org/10.1186/s12967-019-1948-6

“Montoya et al. reported that IFN-γ levels exhibit a significant linear upward correlation with CFS severity [22]. The above-mentioned evidence indicates that IFN-γ, rather than IFN-α/β, is a good biomarker in the early stage of CFS and that it can be used for clinical decisions regarding CFS severity.

Increased IL-2 levels in blood were confirmed by both clinical and bench studies [52, 53]. A recent study reported an enhancement of circulating pro-inflammatory cytokines (including that of IL-2, IL-6, and TNF-α), which was associated with depression in patients with CFS [26]. However, some studies have contradicted these results, with no significant differences in IL-2 levels between patients with CFS and healthy controls [43, 54].”

In Dr. Shoemaker’s CIRS studies:

– He finds a low Treg ratio, that Dr. Patterson also sees in his Long-COVID patients

– He advises the use of statins to reduce high C3a

However, he largely sees VEGF as a positive and sees lows VEGF as a factor in hypoxia and post-exertional malaise. The normal range he, and Quest, uses is also very different to Dr. Patterson’s: 31-86 pg/mL versus < 20 pg/mL.

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Ian Hodgson PhD

Ian Hodgson PhD on July 22, 2021 at 7:42 pm

Many viruses alter signalling processes. ME is an alteration of signalling. CCL5 is associated with inflammatory signalling. Virus infection, post infectious disorder and ME are extremely complex and you would expect a rise in CCL5 as well as many other signalling proteins. To focus on CCL5 as THE causes of post viral and ME syndromes is naive but I can understand the hope. It may form part of a test but not a test in itself.

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Robyn

Robyn on July 23, 2021 at 6:43 am

Prior to my Lyme diagnosis, my T-cell count was drastically low. So low, in fact, they kept sending me back for HIV testing despite my monogamous marriage and no history of IV drug use. Lyme attacked my immune system, and basically shut it down. My very wise Lyme literate doctor also put my on antivirals to fend off coinfections along with my IV rocephine to treat my undiagnosed Lyme disease.

If you have ME/CFID/CFS, please get a Western Blot and Urine Luat test for Lyme disease. That was my first incorrect diagnosis. And if that is negative, please take some antivirals. They will change your life!

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Christina

Christina on July 23, 2021 at 12:47 pm

What specific antivirals?

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George

George on July 24, 2021 at 3:25 pm

Many will ask this question- if i’m unable to get a test, what if i take these antivirals? I’am in such a situation and i want to do something , instead of doing nothing.

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Veteran Air commodore Dr HSR ARORA

Veteran Air commodore Dr HSR ARORA on July 23, 2021 at 8:15 am

Very unique research work . My assessment of Post COVID 19 Syndrome is global micro & macro blood vessels & lymphatics endothelial dysfunction as a result of persistence of inflammation in vessels .Causing forward & reverse logistic system dysfunction failure.

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Debbie

Debbie on July 23, 2021 at 9:05 am

Yes, Ivermectin really helps with covid, long haul and Lyme. Be sure and also do a heavy metals detox. Parasites in your body absorb heavy metals and when they die from the Ivermectin, your body then absorbs the metals. Can cause a number of symptoms. Check out mercury toxicity symptoms. Hope this helps someone.

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Betty Mekdeci

Betty Mekdeci on July 23, 2021 at 10:06 am

I was interested in the comments about the children of fathers with exposure to Agent Orange. Our National Birth Defect Registry collects data on all kinds of birth defects and health conditions. For many years, we have worked with Vietnam and Gulf War veterans. Of 505 cases of ME/CFS in our registry, 393 are in the children of Vietnam veterans who had exposure to Agent Orange.

A note about statins: long before statins were used in mold therapy, cholestyramine (an older statin) was used to detoxify workers exposed to Kepone, a chlorinated pesticide made by Allied Chemical company.

My new doctor got Covid and treated himself successfully with ivermectin.

Maraviroc has some very, very serious side effects. I think it would be very problematic in anyone with Mast Cell Syndrome because it can cause life-threatening allergic reactions. That brings to mind an interesting question: do Covid Long Haulers develop Mast Cell Syndrome? Do they have crimson patches in their throats? Fingerprint changes? Blood cell deformations? Just wondering.

Finally, according to the late Paul Cheney, for many years the CDC monitored a significant number of ME/CFS patients who were immune deficient with very low T cell counts and anergy (absence of response to antigens). These cases looked like AIDS, but were HIV negative.

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Norman Ratliff III, MD FACC

Norman Ratliff III, MD FACC on July 24, 2021 at 6:18 am

My wife contracted long Covid and has been debilitated for 18 months. I am a clinical cardiologist. I had a long discussion with Dr. Patterson yesterday and truly believe in this man’s credibility. I believe that he has in fact determined the underlying pathophysiology of this disease and has developed a breakthrough diagnostic test and treatment protocol that will also eventually lead to a treatment for ME/CFS.

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Cort Johnson

Cort Johnson on July 24, 2021 at 1:50 pm

Good to hear! Let’s hope he’s on the right track.

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Sylvia

Sylvia on July 25, 2021 at 4:54 am

Thank you Norman. While I am sad to hear of your wife’s condition, I have the same impression of Dr Patterson. Hopefully he can put the brakes on the self-congratulatory antics of Dr Yogendra. What Dr Yogendra may not realize is that patients and their loved ones are also reading his twitter feed. Granted, scientists love to get excited on twitter and congratulate each other, but a word of two of understanding and compassion might be called for to temper a young man’s boasts in the face of tragedy. The stories of Long Covid patients, ME patients, previously healthy people contracting the same symptoms after vaccinations, as well as ME patients experiencing devastating relapses after vaccinations (not just the current vaccinations) call for some decorum, in my opinion. I hope your wife makes a full recovery.

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Anthony Cade Minniti

Anthony Cade Minniti on August 18, 2021 at 8:34 pm

How is your wife doing? Any update?

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Ricardo Hausmann

Ricardo Hausmann on July 25, 2021 at 3:27 am

I think an important part is missing in the story of Dr Bruce Patterson #Leronlimab https://youtu.be/uSfzhwkByf0

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Cort Johnson

Cort Johnson on July 25, 2021 at 8:38 am

Leoronlimab is another CCR5 inhibitor which Patterson used trials of acute COVID. I don’t know why Maravaoric (however it’s spelled) had become the drug of choice for long COVID. If I remember correctly in one of his interviews Patterson said another inhibitor was on the way.

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TRACEY G

TRACEY G on July 29, 2021 at 10:50 am

In the article I read about Patterson’s Long Covid protocol, he mentioned that he has treated 2,000 people with Long Covid and 98% of them recoverHas ed within 6 mos of starting his treatment. If this is the case, seems like a good number of these 2,000 former patients would have posted something about their successful treatments on social media. Has anyone seen any such posts? Or maybe my logic here is wrong?

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Cort Johnson

Cort Johnson on July 29, 2021 at 1:21 pm

98%! That kind of number scares me. Is there any disease with such a high success rate?

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Tracey G

Tracey G on August 4, 2021 at 11:30 am

Heres’s the link to the interview with Dr. Patterson where he makes that claim. It’s around the 2nd question’s answer. In his defense, I think he’s only treating patients who meet specific markers he tests for before agreeing to treat. Maybe that accounts for the crazy high success rate.

https://www.eatthis.com/news-long-covid-cure-doctor-patterson/

Cort Johnson

Cort Johnson on August 7, 2021 at 8:17 am

Good point about the specific markers. I can’t remember how effective they were at identifying long COVID patients in the study. That’s a good number to know. I think it was in 80 percentiles. Looking forward to seeing some treatment studies.

Kathe B.

Kathe B. on August 9, 2021 at 2:09 pm

This is reminding me of the German study that was done that found many with ME/CFS were not able to fully clear EBV. I got excited about that (like I did when they got us all worked up about XMRV and we all thought, this must be it!! Til it wasn’t) So I hoped the German study would figure out how to get our systems to go the extra distance to be able to clear it and we’d get better. Heavy sighhhhhhhh I find I’m weary of feeling hope now. I got ME/CFS at age 36, now I’m 69 and I hope reincarnation is a thing because I feel like I got cheated out of having a life this go-round.

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Elsa K

Elsa K on August 27, 2021 at 10:57 am

It’s because maraviroc already has been approved by the fda (for HIV) where as lerimnolab is still going through the approval process.

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