The coronavirus presents both a curse and a potential blessing. The curse is obvious – millions sick, many dead, economies under siege, etc. The blessing is less obvious, but for people with chronic fatigue syndrome (ME/CFS) and other post-infectious diseases, such as autoimmune diseases, it’s clear. Researchers have been given the gift of a huge laboratory, really, in which to understand how a simple infection can lead to chronic diseases long after the infection has been vanquished.
The long haulers could be a game changer for those with post-infectious illnesses. For that to happen, though, the research community will have to study them.
We’re facing an unprecedented situation – a worldwide pandemic that’s caused – in what’s surely a huge undercount – 63 million documented infections and 1 1/2 million deaths. While the vast majority of those infected with the coronavirus will recover and go on with their lives, some will suffer its after effects, such as lung, kidney or neurological damage. Others may come down with autoimmune diseases. Anthony Fauci, the director of the big immune institute at the NIH, has reportedly said that he believes from 10-30% of those sickened by the virus may have problems recovering.
As Ian Lipkin noted early on, it’s going to take years to fully assess the impact of the SARS-CoV-2 coronavirus. If studies in the past, which suggest that from 5-10% of those people sick enough to see a doctor because of an infection come down with ME/CFS, though, possible that millions of people may come down with ME/CFS.
The huge question facing the both the long haulers and the ME/CFS community is whether the research community at large will use the laboratory, or opportunity that’s been presented to them, to understand how post-infectious illnesses occur. Unfortunately, post-infectious illnesses have been amongst the least studied in all of medicine. That means that outside some ME/CFS researchers, there’s been no cadre of post-infectious researchers waiting in the wings to pounce on the coronavirus when it came.
ME/CFS Community Gets to Work
Recognizing the opportunity before it, the ME/CFS Community sprang into action. The Solve ME/CFS Initiative devoted its Lobby Day to educating Congressmen and women about the COVID-19 ME/CFS connection, and then used the COVID-19 connection to strike at a long-sought prize – direct Congressionally mandated funding, and oversight of ME/CFS research at the NIH. While that effort has not made it over the finish line yet, it’s resulted in a remarkable 52 Congressmen signing on.
The Solve ME Initiative has also partnered on COVID-19 / ME/CFS research grants, supported major media articles, created a long-hauler webinar, reached into the long-hauler community, and will soon be tracking the long haulers in its Patient Registry.
For its part, MEAction reached out to the long-hauler community, produced webinars, and launched the “Stop.Rest.Pace.” campaign to help educate long haulers and medical professionals. It has helped to place long-hauler / ME/CFS stories in major media outlets including the The Washington Post, CNN, The Atlantic, Time, and The Guardian.
Plus, in “Rehabilitating COVID-19 “Long-Haulers”: The ME/CFS Connection” Workwell used their two-part accredited MedBridge course on ME/CFS to support health care personnel in understanding and managing the long haulers they are seeing.
The Studies
The rubber really meets the road, though, at the same old place – funding. We don’t really get anywhere until the long haulers are prodded, scanned, and sampled enough to tell how a coronavirus infection turns into diseases like ME/CFS.
Pitiful NIH Response
The coronavirus has put the strengths and weaknesses of our national institutions in stark relief. Claudia Carrera of MEAction came in at the very end of the recent interagency NIH discussion to deliver a splash of hot water.
Carrera asserted that the long-hauler train that appears to barreling down the tracks at our medical system warrants “a massive coordinated response to take place across agencies at warp speed. In short, the NIH should engage in a “top down strategic effort, driven by task forces and offices with real authority”. Dr. Koroshetz, who can be refreshingly honest at times, agreed with everything she said.
The pitiful answer, though, was that there was no plan or strategic effort. The NIH is going about the long-hauler issue in the same way it usually does: letting things would unfold as they unfold. The long haulers, like the ME/CFS patients before them, were going to be left at the mercy of the medical research system.
Francis Collins’s Sept. 3rd blog, “Citizen Scientists Take on the Challenge of Long-Haul COVID-19”, which managed to be both encouraging and infuriating at the same time, was a case in point. Lauding the “citizen scientists” at the Body Politic who created the first large-scale post-COVID survey, Collins thankfully highlighted the fact that even mild cases of COVID-19 can cause significant long-term health effects. Yet Collins, who always finds a way to laud the NIH for something in his blogs, was unable to point to a single program the NIH had created to help the long haulers.
That doesn’t mean nothing is being done – there’s simply no coordinated effort underway.
The First Need: Long-Term Observational Studies
“You need a lot of patients to study anything. We will have enough patients to study at least that kind of ME/CFS that develops following COVID.” Anthony Komaroff
I looked through approximately 120 studies that popped up when using the search terms “sequelae” and “COVID-19” on the clinicaltrials.gov and projectreporter websites to try to figure out what kinds of studies feature the long haulers.
Two separate issues need to be addressed. First, simply documenting the presence of long-term fatigue and other problems is crucial. It may, in fact, be the most important task – as the documenting of large numbers of still sick people should unlock more funding down the road.
If an ME/CFS-like subset is present – and it certainly seems to be – it will be found
On this issue, the news was very good. Enough tracking studies appear to be underway that if an ME/CFS cohort (or other cohorts e.g. fibromyalgia, neurological diseases, lung problems) show up, it should be found.
All of the studies below are following coronavirus patients for at least one year. The one that requires hospitalization will include less severe hospitalized patients.
- Nancy Klimas will be following 2,200 COVID-19 patients over time South Florida in a $4 million study.
- Avindra Nath is following 1,200 COVID-19 patients over time.
- Leonard Jason is tracking several hundred COVID-19 college students over time.
- A 900-person study assessing COVID-19 outcomes is slated to last through 2027.
- A 150-person observational COVID-19 Norwegian study runs through 2023.
- A 250-person Columbia study tracks COVID-19 patients over one year.
- A 250-person Johns Hopkins study will compare inflammatory/immunological, physical, pulmonary, and neuropsychological status in severely ill patients vs patients who simply received oxygen during hospitalization over 12 months.
- A 400-person French study will study sleep, exercise capacity and respiration in COVID-19 patients for five years.
- A huge (4,000-person) European study will follow anyone with respiratory issues (such as cough, sore throat, etc.) after an infectious illness for two years.
- A 350-person New York University study will assess COVID-19 outcomes over several years in its survivorship database of coronavirus patients.
- A year-long Australian study at St. Vincent’s Hospital in Sydney is following 100 COVID-19 patients.
I’m surely missing some studies but it’s clear that if an ME/CFS-like post COVID-19 cohort shows up, we will know about it. If its large enough, it will set the long haulers – and hopefully people with ME/CFS – up for studies for years to come.
The Understanding Long-Hauler Studies
Studies that dig deeper will hopefully ferret out the clues we need to understand post-COVID 19 and ME/CFS.
The Hospitalized Patients Situation
“One challenge is differentiating post-viral fatigue syndrome and ME/CFS from the lingering effects of being in an intensive care unit or on a ventilator, which are known risk factors for long-term ill health.” Joseph Breen, NIAID – Washington Post
Hospitalized patients present some positives and some negatives. The ideal cohort for an ME/CFS study would seem to be one that matches the majority of ME/CFS patients at the time they became ill – mostly healthy, younger, or at least not old, people, who came down with a cold they were never able to shake. Because the infections that trigger ME/CFS rarely land people in the hospital, COVID-19 patients who are hospitalized present at least a somewhat different cohort.
One danger with focusing on hospitalized patients could conceivably someone making the argument that it makes sense for someone who was hospitalized to remain ill – they, after all, had a serious infection. Everyone else, on the other hand, just had a cold. Why are they still ill?
There are benefits (see below) to using hospitalized patients as well. Ultimately, it’s best that both non-hospitalized and hospitalized patients and that’s what’s occurring.
Hospitalized patients can be differentiated into two types: ICU and non-ICU patients.
ICU Patients
Patients who have been in intensive care are problematic since they receive treatments and undergo procedures such as sedation, immobilization, drugs and ventilation that produce their own costs.
Simply being in a critical care unit is known to produce long-term effects, some of which mimic ME/CFS. Post-intensive care syndrome or chronic critical illness are two terms that have been used to characterize long term problems with recovery after being in the ICU.
Long lasting fatigue, in particular, is extremely common with one study reporting that 50% of ICU patients experienced severe fatigue six month later. A recent paper stated that, with regard to COVID-19 patients in the ICU:
“Prior studies of patient survivorship after an intensive care unit (ICU) stay suggest that many critically ill patients with COVID-19 will face long-lasting physical, cognitive and/or mental health impairments.”
The paper noted that COVID-19 patients with severe respiratory failure may require long periods of “mechanical ventilation, deep sedation, neuromuscular blockade and the associated immobility which increase the risk of physical impairments.”
Patients from the ICU present complications…
Prolonged ventilation can cause diaphragm dysfunction and other injuries. Plus, COVID-19 patients in the ICU may have receive drugs like hydroxychloroquine, steroids, antivirals, anticoagulants, etc. that few people with ME/CFS receive. People in the ICU also often experience “prolonged delirium“.
The fact that the fatigue was correlated with male gender, a diagnosis of major depression, and a prior history of anxiety disorder in these patients also suggested that many of them may be different from ME/CFS patients.
References to post-traumatic stress disorder are also rife in post-ICU syndrome and cognitive behavioral therapy is frequently recommended. One overview reported that from one quarter to one-third experience “anxiety, depression and post-traumatic stress disorder (PTSD)“.
So many things are going on in COVID-19 ICU patients that it’s difficult to say what’s causing what. Even if they end up meeting the criteria for ME/CFS, the presence of other disease classifications like post-ICU syndrome would make it hard to classify them as ME/CFS patients.
Hospitalized COVID-19 Patients
Simply being hospitalized for COVID-19 results in a different kind of patient being assessed, as well. One study found that risk factors for hospitalization due to COVID-19 included severe obesity, diabetes, chronic kidney disease, hypertension and asthma, as well as being older, and being male.
Several studies have found that nearly all hospitalized COVID-19 patients had more than one underlying condition, with hypertension, obesity and diabetes leading the list. Thirty percent had some sort of lung disease, 34% had coronary artery disease or congestive heart failure, and 22% had a neurologic disease.
While younger COVID-19 patients can be hospitalized (12% were between 18-40 years old), most are older (65%>50 years old; 45%>65 years old). Almost half were diagnosed with pneumonia, 40% experienced acute respiratory failure, 18% acute kidney failure, 18% sepsis and 10% acute respiratory distress syndrome (ARDS).
Hospitalized patients then present a different slice of post-infectious illness than we typically see in ME/CFS.
On the other hand, most COVID-19 patients who end up being hospitalized do not end up in the ICU or on ventilation. (One large study found that 32% required ICU admission and 19% ended up on ventilation.) The majority of hospitalized COVID-19 patients who probably simply receive oxygen and do not experience any kind of lung or organ damage wouldn’t seem to present a problem.
There are also some pros to using hospitalized patients. They’re a lot easier to find, and will have the results of numerous blood and other tests. Plus the fact that they are severely ill suggests they’re probably more likely to come down with an ME/CFS-like illness; i.e. you may be able to get more bang for your research buck using hospitalized patients.
Plus, you could compare them to post-ICU patients and see if similarities emerge. Dominic, after all showed us how similar post-ICU may be to people with ME/CFS. If similarities did emerge, a new and bigger world of ME/CFS could potentially open up. ME/CFS may not be simply the result of “ordinary infections”; it also shows up in critically ill patients. Post-ICU syndrome could be ME/CFS. An outcome like that could broaden the disease and increase its impact. In the end, it’s important that some hospitalized patients be assessed.
Once researchers started looking for fibromyalgia in other pain diseases, it showed up in spades. A portion of the patients in every chronic pain condition – from arthritis to multiple sclerosis to lupus to migraine – come down with fibromyalgia.
Could having a serious illness do the same for ME/CFS?
The NIH Studies
Unfortunately, the NIH is taking a laissez-faire approach to the long haulers. There’s no rhyme or reason to the studies it’s funded. It’s simply responding to researchers who have chosen to apply for grants.
That tells us some things about the NIH. One is that media attention only goes so far. Long-hauler stories have permeated biggest media outlets. Virtually everyone knows what “long hauling” is now, yet the NIH has not responded with any initiatives. It appears that either it takes a major political crisis (the opioid epidemic) or Congressional action (the Shark Tank) to get the NIH out of its rut.
When the NIH has moved with ME/CFS, it did so after internal NIH initiatives such as the IOM Report (research centers) or the NANDSC report (strategic report) were produced.
The consequence of the NIH taking a hands-off approach to the long haulers is a mish-mash of studies that range from assessing COVID-19’s long-term effects in people with Alzheimer’s, or high-risk expectant mothers, in people in Haiti, or people at risk for HIV.
Ideally, we want a comprehensive. broad-based study focused on long haulers who mimic people with ME/CFS; i.e. mostly healthy, mostly younger people. The one notable non-ME/CFS long hauler study that I could find – a UCSF long-term, longitudinal study – focuses on immune factors. Thankfully, it will include a wide spectrum of SARS-CoV-2 infection severity, and collect large volumes of peripheral blood and saliva during frequent intervals over two years. This study could tell us much – yet even it is too limited. We need studies that assess the many other factors that may come into play for ME/CFS.
The long haulers should note that all of those feature ME/CFS researchers.
The ME/CFS-Focused COVID-19 Studies
Four Steps Ahead of the Game – The Nath Study
Who knew back in 2015 that Avindra Nath would turn out to be such an potentially seminal figure? Now it’s Nath who’s leading the charge on the long haulers at the NIH. Nath has been all over the media, calling for more and more research on the long-term effects of COVID-19. Nath is making it clear that having established researchers in the NIH wheelhouse is incredibly important.
When COVID-19 came, he was ready. In the interagency NIH call, Nath said his team was “four steps ahead of the game”. They already had a protocol, they had a team of investigators standing by, and they understand aspects of it.” They, he said, “are in a very good place …”
Avindra Nath said he was “four steps ahead” of the rest of the crowd.
He was clearly excited at being able to catch the disease in the act. The long haulers are different, after all, from his ME/CFS patients who’d become sick within two years. The long haulers are freshly ill. Their systems are evolving right now. Only Lenny Jason, with his samples from his pre-mono healthy students, has a possibility of getting a closer look at ME/CFS in its inception.
Beth Mazur of MEAction was on top of the announcement when it came. As soon as the 1,200-person Avindra Nath study was up, she was on it, tweeting about it.
In September, Brian Walitt reported they’d already received 1,000 calls from COVID-19 patients. The 1,200-person study will follow long haulers over time, and identify some individuals who will participate in Phase III of the study: an “ME/CFS / COVID-19 deep phenotyping approach”; i.e. Nath is going to will throw the kitchen sink at them. In fact, the study overview specifically refers to the approach Nath took with ME/CFS:
“The deep phenotyping methods employed will be synchronized with other NIH-approved deep phenotyping protocols to foster cross-phenotype comparison research with other medical syndromes, such as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Gulf War Illness. Deep phenotyping characterizations would be used to generate scientific hypotheses for testing in future studies.”
The NIH is doing the same intense, deep dive into Gulf War Illness that it’s been doing in ME/CFS. The peak exercise tests, the brain functioning, the immune, autonomic, metabolic, mitochondria, microbiome, gene expression studies – they’re all in there.
So – Nath’s ME/CFS intramural study has spawned a COVID-10 long hauler and a Gulf War Illness (GWI) study. what is the only reasonable conclusion we can draw from that? That Nath’s MECFS study has been successful; i.e. Nath has found enough from his ME/CFS study to warrant doing the same kind of very intensive study in COVID-19 and GWI. That’s very good news for us.
That’s not it for Nath at all, though, who appears to be a very busy man. Nath is also doing a separate 50-person study of the neurologic problems following COVID-19 that includes brain scans, lumbar punctures, and cognitive testing. Nath, who believes that inflammation is probably at play in the long haulers, has already performed autopsies on almost two dozen COVID-19 patients.
Plus, back in 2015, Nath started a 1,000-person study to learn how inflammation and infections affect the brain and nervous system. The study is open to people with known or suspected infection or inflammation of the nervous system; i.e. people with fever, signs of infection in the cerebral spinal fluid or MRI, or a clinical history of infection.
Many people with ME/CFS would probably fit fine in this study. As with the other studies, Nath will follow the participants over time, taking blood, urine, and saliva collection; doing neuroimaging and a spinal tap and possibly other tests. The study runs through 2025.
We were very lucky to get Nath.
The $4 Million Dollar Study – Nancy Klimas Takes on the Long Haulers
Four million dollars – for one of our top researchers – to study the long-term effects of COVID-19 … Now, that’s a study.
It wasn’t the NIH which funded it – it was the CDC – which is well acquainted with Dr. Klimas’s ME/CFS work, . which surely helped Dr. Klimas get this $4 million dollar-plus grant.
The big study will follow 2,200 people from a diverse array of backgrounds in Southern Florida, 200 of which will get more extensive workups at the clinic. Unfortunately, that’s all I know.
Getting at the Molecular Basis of Long Hauling (and ME/CFS) – The OMF Study
The OMF has received $1,000,000 to dig deep into the molecular underpinnings of formerly hospitalized COVID-19-triggered ME/CFS patients. The study, which involves all four of the OMF’s research centers, will undertake detailed genomic, metabolic, and proteomic analysis over time.
This is exactly the kind of broad, comprehensive analysis that we’re not seeing in non-ME/CFS-oriented studies. It’s the kind of study that could probably only come from ME/CFS researchers. It’ll be fascinating to see what Tompkins, with his background in sepsis, finds out.
The Linchpin – Leonard Jason’s Unique Opportunity
With his ME/CFS infectious mononucleosis under his belt, Lenny Jason was primed to tackle the long haulers.
Leonard Jason quickly applied for and got a university grant to assess the effects of COVID-19 in the almost 5,000 college students he’d already been tracking after they came down with infectious mononucleosis. He reported that about 5% of the college students he’s contacted have come down with COVID-19.
Jason, then, is in the unique position of being able to compare two post-infectious cohorts to study at the same time. Jason could ultimately tell us if the coronavirus and EBV trigger ME/CFS in different ways.
Plus, because he’s the only one who has blood samples from before the participants became ill – Jason’s study provides the scintillating possibility of identifying an immune hole that let the whole process get started in the first place.
Jason’s already found a possible immune hole (reductions in IL-5, IL-6, IL-13) in the college students who came down with ME/CFS after a bout of infectious mononucleosis/glandular fever. Next, he will look for one in the college students who come down with ME/CFS after COVID-19. Jason will also look to see if the immune networking gets altered in both cohorts after they became ill.
Like Nath, Jason was set up to tackle COVID-19 when it showed up. His prior infectious mononucleosis study was able to fold perfectly into a COVID-19 study when the coronavirus showed up. Examining the effects of COVID-19 and infectious mononucleosis in a perfect cohort of young and healthy patients provides a precious opportunity to catch ME/CFS in its tracks. The only question in my mind – does Jason have the money he needs to fully investigate these patients?
Conclusion
There is hope! It’s clear that the rate of ME/CFS that shows up in the long-hauler community is going to be documented. If all goes as expected, that should set the long haulers up for studies for years to come.
The most optimal time for studying is now, though – as the long haulers are getting ill. The pandemic is certainly cooperating. While it’s unfortunate for those afflicted, the new heights the pandemic is roaring to are providing researchers a distinct – but also limited – window of opportunity.
Most of the COVID-19 sequelae studies will probably not help the long haulers who did not get severely ill. The ones initiated by ME/CFS researchers will…
The good news is that we have four excellent studies that are ploughing ahead trying to understand what’s happening as COVID-19 patients convert to ME/CFS.
The bad news is that we have four studies – not the dozens the long hauler situation warrants or the ME/CFS community deserves. That’s partly a consequence of the NIH yet again taking a hands off approach.
Some long haulers have winced at being associated with ME/CFS and there has been talk of creating a new disease for them. They should know, though, that what was predicted – that the NIH would not rally to their cause – and that the research community would not spring to study them – has occurred.
Most COVID-19 sequelae studies are limited in focus and are focused on the severely ill. Very few in-depth studies are focused on the formerly healthy people that make up the vast majority of the long haulers, and those that are have come mostly out of the ME/CFS research community. Those studies are more comprehensive and are using insights gained from past studies to inform them. Without them the long hauler community would be in real trouble.
In other words, the long haulers who fit the criteria for ME/CFS would be best served by sticking with us and fighting with us for more funding.
The few studies we have are certainly promising. Nath’s study is doubly intriguing because he will apply the insights he’s learned (whatever they are!) from his ME/CFS study to his COVID-19 and GWI studies. Should those findings hold up, we could conceivably have validation across three different entities – something that would one would think, be a game-changer. The fact that this is coming from Nath, the well-respected head of the NINDS effort at the NIH’s big hospital, means his results will get heard.
We don’t know much about Nancy Klimas’s study except that it’s big and expensive – and is in the hands of a creative and respected researcher. Good for the CDC for giving her what must be one of the more expensive studies they’ve funded.
The Open Medicine Foundation’s study will undoubtedly use the insights it’s gathered from the severe ME/CFS study to inform its work, as well. This study will dig the mostly deeply of all the studies into the molecular dynamics at play – providing a nice counterpoise to Nath’s work.
Lenny Jason’s provides a unique opportunity to assess the health status of future ME/CFS before and after they become ill. Jason’s study could uncover the immune – or other – hole which allowed ME/CFS to appear once the infection took hold. It could provide the linchpin, if it all works out, that definitively explains ME/CFS.
Other studies into the coronavirus will provide their own insights into what happens during the early stages of infection and illness. Plus, other long-term studies are underway. The 20 plus grant applications ME/CFS researchers put into the Congressionally Mandated Medical Research Program (CDMRP) earlier this year could provide more help. We got into that program (thanks Solve ME) at just the right time.
It’s impossible to tell what these studies will find but it’s hard to believe that they won’t provide important insights into both the long haulers and ultimately ME/CFS.
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Thanks for this, Cort. I think it might be too easy for many of us (like me) to assume that the silver cloud to Covid 19 will be unraveling — or at least having better comprehension of and respect for — ME/CFS.
One positive I can report is that my pulmonologist at NYU/Langone tells me that she feels that in five years time, due to covid research, it will be easy for an ME/CFS patient to find a GP who understands ME/CFS. Five years and the promise not of a treatment or a cure, but of a GP who at least understands it! Well, that’s something, I guess.
Another positive is that this pulmonologist seems to understand more about ME/CFS than she did a year ago, and it is presumably because of the experience last winter/spring and this summer of covid.
But you’re right. Step by step, little by little, isn’t good enough. The danger of losing this opportunity is enormous.
I didn’t point this out in the blog but I realized later that, as Ron Davis has noted, is that the really important thing now is to gather samples – lots of samples. For some tests you need fresh samples but many others you can use banked samples. So if lots of samples are gathered we still have a historical record of what’s happening to the long haulers than can be analyzed.
Plus infectious mononucleosis and other common infections will always provide the opportunity to study post-infectious diseases. The opportunity won’t be nearly as large but it will be there.
Even if the present studies don’t give us “the answer” – which might be asking for a lot – if they’re successful enough hopefully they’ll birth more study into post-infectious studies.
Thanks Cameron for providing that. Having doctors look at ME/CFS in a new light is indeed a big breakthrough – a silver lining that I hadn’t thought of.
The same applies to researchers. I can’t imagine but that we won’t get more researchers interested in this disease. Think of the opportunities for COVID-19 long hauler and ME/CFS cohorts to participate in the same study.
That’s actually kind of happening right now with Nath and Lenny Jason. As a researcher I would think I would jump at that kind of opportunity to study both at the same time.
Sorry, second PS.
Is Tony Fauci MIA in this?
Fauci just noted that long haulers are a real problem but yes, so far as taking a organized approach to the long haulers, so far as I can tell, he is MIA. He’s the head of the big immune institute in the NIH (NIAID) which would be taking the lead on this.
The fact that Fauci is aware of what is happening is encouraging, though. Might we see more support for ME/CFS from NIAID now?
Cort, timely topic, excellent blog!
Interestingly, Tony Fauci is hosting a 2-day Workshop on Long Hauler COVID19 December 3-4, 2020 to identify research gaps (videocast at https://videocast.nih.gov starting at 10am Eastern time). Drs. Peter Rowe, Avi Nath & Tony Komaroff are participating and surprisingly the 100,000+ COVID19 Survivor Corps patient organization doesn’t appear to be.
Survivor Corps objects to NIH changing the name of Long Hauler COVID19 to “Post Acute COVID19 Sequelae” [title of the Workshop] which they state is inaccurate and not supported by the data. They prefer the name “Long Term COVID19.”
great news. Thanks Gemini….This could be very big.
Thanks for everything. Isn’t Ampligen also being tested for long haulers with cancer
but also with cfs ?
I saw Ampligen has also developed a nasal spray version
Cort, I don’t know if you have highlighted Dr. Horowitz’ Covid treatment plan? It focuses a great deal upon preventing the immune over-reaction cytokine storm, which in my mind is highly relevent to ME/CFS and Chronic Lyme, as well as all of the other closely related things we deal with here in Wonderland.
Good stuff Cort – thanks for the update, very informative and useful. I am equally concerned at an opportunity squandered – especially in the lack of longitudinal brain-scanning that should be done in tandem with blood-sampling and symtom recording to detect the course of the inflammation in the brains of ME/CFS patients.
I am too. I wonder if the OMF group is doing that? Tompkins has access to some great imaging technology and I know he wants to go in that direction.
A bit off topic, but has anyone looked into Me/CFS and Fibro patients getting the COVID 19 vaccine and what the ramifications from that could potentially be?
I am going to see if I can get some docs on the record about that.
Thanks for all the information.What about Ampligen which is supposedly being tested
not only cancer and covid but also CFS and covid.
Another great research round-up Cort! Seeing your list helps to keep my spirits up–just a bit. There IS hope!
A bit off topic, but I just ran into a study by Jarred Younger on brain metabolite levels in people with well controlled RA who still had high levels of fatigue. Choline (and also myoinositol) may be the culprits. Could be a ME/CFS clue.
https://www.medpagetoday.com/rheumatology/arthritis/84736
And speaking of Covid, also saw that vigorously rubbing the outsides of disposable masks (the blue ones) with a neoprene glove, sets up a static electric charge which will repel microscopic Covid droplets for several hours. This will not work on 100% cotton masks, only those which are at least 50% polyester.
…And people who are immunocompromised or have cancer can shed viable Covid particles for at least 2 months. (Link on request). The main reservoir is in the nose.
Thanks again, Cort!
Re:
“for people with chronic fatigue syndrome (ME/CFS) and OTHER POST-INFECTIOUS DISEASES”:
Is ME/CFS now considered a “post infectious” disease, limited in mechanisms of disease acquisition?
I have ME/CFS and go all the way back to the mid 80’s. To my knowledge, I did not get it “post-infectiously.” Way back in the beginning, they thought it was “Chronic Epstein Barr” and were going to name it that. Then they found people with ME/CFS that did not acquire it post infection. There’s whole list of non-infectious triggers.
It feels like the community is drifting toward exclusion of non-infectious disease origin. How do we now fit in to the greater community thinking and actions?
Margaret
@Margaret,
I do think many are trying to pin ME/CFS on a viral cause, but because I am also involved in Stanford’s Chronic Fatigue Clinic (which is kind of an excuse for treatment and research experiments), I can tell you that they are dividing our group into various categories including diffuse onset. I could only glean that much by the type of questions I was asked and am not privy to much more information than that.
@Tracey Anne,
Fantastic news! The squeaky wheel…! Wish my support carried more weight than some lone old cranky individual. If so I would put my name on that list too!
@People Wondering About the Covid Vaccine,
Just ran into an mRNA primer. Seems as if there have been several other vaccines developed using this technique. Somewhat concerning was that in a small subset of individuals, it was found that those with previous autoimmune problems might be inclined to develop additional autoimmune issues from the vaccines.
https://www.medpagetoday.com/infectiousdisease/covid19/89998?xid=nl_mpt_DHE_2020-12-04&eun=g1240599d0r&utm_source=Sailthru&utm_medium=email&utm_campaign=Daily%20Headlines%20Top%20Cat%20HeC%20%202020-12-04&utm_term=NL_Daily_DHE_dual-gmail-definition
Yes, I feel the same way too Nancy – I am feeling optimistic but also very much aware that there is only so much I can do. And then I saw that email from Solve M.E., and the letter from all those organisations collaborating together and I felt really hopeful. I feel there’s so much more power when everyone works together.
Margaret, I agree. Most of the viruses implicated in ME/CFS have been in the herpes family which includes EBV, HHV6 A & B, Herpes 1 and 2, etc. Once you have had one or more of these viruses, they live in your body forever and can reactivate and cause problems when your immune system is dysfunctional. This can happen in transplant patients, cancer patients on chemo therapy, AIDs patients. The famous bubble boy died when he received a stem cell transplant from his sister. She had a mild case of EBV in early childhood. When her stem cells were put into her brother who had no immune system, the EBV formed cancerous tumors and killed him. Many toxic exposures in our environment today can suppress immune function. Even Covid seems to have a more severe effect in communities living near toxic air and/or water.
Is shingles a herpes family disease?
Yes. Shingles caused by the chicken pox virus is in the herpes family.
@Cameron,
I got curious about this also. Betty is correct, both are from the viral family Herpesvirdae.
More than you probably ever wanted to know; https://www.differencebetween.com/difference-between-shingles-and-vs-herpes/
Thanks Betty and Nancy B!
Over the last year I have been closely following the work of a group of very distinguished US clinicians who have developed the MATH+ Protocol, based on FDA approved medicines, to successfully treat Covid-19 patients. They have been using these repurposed medicines to achieve a 90% success rate for treating Covid-19 patients.
Launched in March the MATH+ Protocol consisted of:
Methylprednisolone and the antioxidant Ascorbic acid, which is given intravenously and in high doses. Both of these medicines have multiple synergistic physiologic effects and have been shown in multiple randomized controlled trials to improve survival in ARDS, particularly when given early in the disease. Thiamine is given to optimize cellular oxygen utilization and energy consumption, protecting the heart, brain, and immune system. Given the numerous clinical and scientific investigations that have demonstrated consistent, reproducible, and excessive levels of hyper-coagulation, particularly in the severely ill, the anticoagulant Heparin is used to both prevent and help in dissolving blood clots that appear with a very high frequency.”
Now the MATH+ Protocol has been updated to include Ivermectin for both prophylactic and clinical use.
https://covid19criticalcare.com/wp-content/uploads/2020/11/FLCCC-I-MASK-Protocol-v5-2020-11-28-ENGLISH.pdf
Dr. Paul Marik et al have recently published a meta-analysis of Ivermectin which has an astonishing efficacy as a prophylactic and for treating the different stages of Covid-19.
https://covid19criticalcare.com/wp-content/uploads/2020/11/FLCCC-Ivermectin-in-the-prophylaxis-and-treatment-of-COVID-19.pdf
In this paper they comment on a new study that suggests Ivermectin can greatly benefit Covid Long Haulers.
Here is a quote from their paper on the use of Ivermectin as a treatment for Covid Long Haulers:
“Ivermectin in Post-COVID-19 Syndrome
Increasing reports of persistent, vexing, and even disabling symptoms after recovery from acute COVID-19 have been reported and which many have termed the condition as “long Covid” and patients as “long haulers”, estimated to occur in approximately 10% of cases (77–79). Generally considered as a post-viral syndrome consisting of a chronic and sometimes disabling constellation of symptoms which include, in order, fatigue, shortness of breath, joint pains and chest pain. Many patients describe their most disabling symptom as impaired memory and concentration, often with extreme fatigue, described as “brain fog”, and are highly suggestive of the condition myalgic encephalomyelitis/chronic fatigue syndrome, a condition well-reported to begin after viral infections, in particular with Epstein-Barr virus. Although no specific treatments have been identified for long COVID, a recent manuscript by Aguirre-Chang et al from the National University of San Marcos in Peru reported on the experience with ivermectin in such patients (80). They treated 33 patients who were between 4 and 12 weeks from the onset of symptoms with escalating doses of ivermectin; 0.2mg/kg for 2 days if mild, 0.4mg/kg for 2 days if moderate, with doses extended if symptoms Review of the Emerging Evidence Supporting the Efficacy of Ivermectin in the Prophylaxis and Treatment of COVID-19
persisted. They found that in 87.9% of the patients, resolution of all symptoms was observed after two doses with an additional 7% reporting complete resolution after additional doses. Their experience suggests the need for controlled studies to better test efficacy in this vexing syndrome.”
Surely, this deserves greater publicity and action by public health authorities?
Thanks Dylan!
Yes, the Math Plus protocol with the new addition of Ivermectin is the most promising thing I have heard for the Long Haulers, of which I am one, as well as having ME/CFS. They are appealing to deaf ears in the medical community to get it evaluated and put to work to help people. But there is also a group of scientists from South Africa who have learned that the syptoms of Covid are interchangeable with those of Pellagra. In their protocol, they recommend taking niacin. I tried it and felt it helped me some, but I also used nattokinase to try to break up scar tissue in the lungs, along with vitamin K-2, to prevent too much blood thinning. That was very helpful. I hope that the “establishment” wises up and finally considers the research of some who think outside the box. Keeping the cytokine storms and blasts of histamine down are critical.
I’ve just received an email from Solve M.E. They write: “Chronic Disease Stakeholders join Solve M.E. in Push for Federally Funded Research into long COVID.”
‘Jointly authored letter serves as a warning about the increasing number of COVID-19 patients experiencing post-viral complications.’
‘With more than 13.9 million coronavirus infections in the U.S., the letter emphasizes the importance of research into chronic conditions known to be associated with viral triggers, such as: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Dysautonomia, Mast Cell Activation Syndrome (MCAS), and Postural Orthostatic Tachycardia Syndrome (POTS), among others. Authors of the letter include: Solve ME/CFS Initiative, National Health Council, National Organization for Women, #MEAction, Open Medicine Foundation, Dysautonomia International, The Mast Cell Disease Society, Body Politic, COVID-19 Longhauler Advocacy Project, Hadassah, American Medical Women’s Association, Nurse Practitioners in Women’s Health, HealthyWomen, Bateman-Horne Center, Institute for Neuro-immune Medicine, Pandora Org, Sex and Gender Health Collaborative, Minnesota ME/CFS Alliance, The Shane Foundation, Massachusetts ME/CFS & FM Association, & The American Dysautonomia Institute.
Here is a link to the letter itself:
https://solvecfs.org/wp-content/uploads/2020/12/Long-COVID-Research-Congressional-Letter-Final.pdf
I think the letter is very impressive – Wow!
Nice!
Unfortunately, most of those studies are not true prospective studies that recruit participants before they fall ill, and thus are subject to a variety of participation biases and lack of true controls. Even the MERMAIDS studies require presentation to hospital to be enrolled in the study.
Given all of the activism people have done with regard to stating the importance of measuring the incidence of post-viral syndromes, it is really disappointing that there was no study in place ready to study sufferers from the start of the pandemic – if there was, we’d have much better data already. ME/CFS patients were talking about the possibility in late January, it is disappointing that the research community continues to ignore the wisdom of our community.
While there is additional hope since more people are entering the field, most of these new researchers are unfamiliar with the ME/CFS literature and from their limited perspective, seem to be claiming the same factors (that have been ruled out for ME/CFS) as perpetuating factors for Long-Covid. Answers aren’t going to found by performing the same experiments over and over and expecting a different result.
For example, while it is increasingly recognised that COVID is a vascular disease, most researchers are overly focusing on the “itis”, namely heart and artery damage, which is only present in severe patients, and ignoring the systemic dysregulations that could perpetuate long-term.
It was good to see the NIH workshop on sequelae – maybe there is hope – and it is true that the NIH and the researcher community have long been warned that the long haulers are coming – that many of them will look like ME/CFS patients – and it’s made very little difference.
Outside of ME/CFS researchers, very few researchers have been interested in post-infectious illnesses – and now they’re doing what they do – operating in their own field of endeavor – and missing the point, at least for ME/CFS.
I think we need to continually keep the pressure on politicians and governments to fund research – to make these inanimate systems work for the people they’re intended to help – instead of lapsing into being self serving. I’ve worked for years in different settings – with vulnerable adolescents in a residential care setting, with older people in long term care facilities and now with a variety of clients as a home caregiver in the community.
In each of these roles I/we have had to support clients to fight (or sometimes fight for them if they’re unable to fight for themselves) for what they needed. Even the most obvious aspects of care – the right equipment/does it work?/if it doesn’t work who’s going to fix it?/care hours/support for families (highly contentious), visits by the physiotherapists, occupational therapists, speech and language therapists, community nurses, doctors – it’s absolutely insane at times. And don’t even get me started on the lack of research into some of these degenerative diseases that people I have cared for, have suffered from – no one’s really properly looking – there’s hardly any money for research. Same old story.
And with these illnesses, like ME/CFS, people are often so unwell that all they can attempt to do, is survive. At one point, a few years ago, I was just surviving by the hour – my brain was so inflamed. Now that my level of functioning has improved, I feel I just want to pledge my support to doing what I can, in a sustainable way, to advocate for those, who cannot advocate for themselves. When the revised NICE guidelines on ME/CFS are formally approved and published, I will print them out and then annoy any medical professionals that cross my path – that should be fun…
I’ve seen that here in Ireland, that more money is apparently going to be made available for managing chronic illnesses. When the revised NICE guidelines on ME/CFS are in place, then I presume the Health Service Executive (HSE) Working Group on ME/CFS will continue with it’s work. It all takes so much time and I feel so frustrated but this is how the system slowly cranks on, regardless of human suffering. I am trying my best to make sense of what I can do, without completely blowing a gasket.
I hope things work out and more research happens but if I look at how the pandemic is being handled by the Health authorities… I am not too hopeful. It just makes no sense to treat people with covid only once they are severe.
Just saw this article about the need to address Covid long haulers;
https://www.nytimes.com/2020/12/04/health/covid-long-term-symptoms.html
I don’t know if I feel angry reading it or hopeful. Angry because here we sit, thousands of compromised people with ME/CFS and not much attention–and then hopeful because maybe some of the Covid attention might spill over onto us.
As someone who was bedridden with ME/CFS (high titers to Epstein-Barr,cytomegalovirus,HHV6) in early 1990s, the pathophysiology of Covid 19 is following the same pathways in susceptible patients. One of the hallmarks of persistent viral infection is the lowering of EFA &derivatives levels on cell membranes. The consequence of this is an imbalance of eicosanoids due to inhibition of delta 6 & 5 desaturase enzymes. This leads to a malfunction of the interferon response and a deficiency of PGE1 signaling and over production of 2 series prostaglandins (results in cytokine storm). Restoring EFAs and derivatives in balance with known co-factors will bring patients back at least to 80% in 90 to 120 days. Go to my website to verify the published science and trials.
go to natural cancer recovery under blog section -Covid for detailed explanation of impaired delta 6 pathway due to persistent viral infection — it is not about strengthening your immune system, it is about balancing the response so the immune system is DIRECTED correctly to the pathogen and not the host (you – otherwise autoimmune disease initiation)
THANK YOU. I’m truly heartbroken for the current state of the world but found it unbelievably coincidental that long haulers are experiencing what I have been experiencing for over 35 years. Somehow I still had empathy for the woman who was weeping on the news because she’s considered a long hauler and has “been so sick the last four months”. Months. However, my anger is more than immeasurable. I’ve always been convinced that I have been suffering from some type of virus/retrovirus this entire time though doctors back in the 80’s couldn’t figure it out so sent me to shrinks (who sent me back to doctors). How many of us have been thru this vicious cycle?!? Maybe now, WE will be taken more seriously. Extraordinarily sad that it took a worldwide pandemic to be acknowledged – though still practically sneaking in the back door. There may be as many as 2.5 million ME/CFS sufferers in America alone – but now that the numbers are drastically increasing, maybe now WE will be seen/heard/helped. Good luck to us all. Thank you Cort.