+100%-

This is a response to Alice’s thoughtful blog, “No, long COVID is not helping ME/CFS – and we should stop pretending that it is…”

No, Long Covid is Not Helping People with ME…

Alice’s blog was carefully written. She wrote, “As things stand, there is substantial evidence that long COVID is *not* helping people with ME in any systemic, meaningful way.” She asserted that in some ways (reduced access to ME/CFS experts, fewer major ME/CFS media articles, ME/CFS researchers turning to study long COVID), long COVID was actually making things worse.

She also questioned whether help would come quickly enough for people in dire need. She ended the article by warning that we should not assume that long COVID is going to float all boats and that we must fight to ensure that ME/CFS will quickly benefit from the insights and new possibilities that long COVID will bring.

Much of what Alice wrote seems accurate to me, if incomplete. I believe, though, that question is not whether systemic, meaningful change is underway – it is – but how we can maximize it.

The Game-Changer

long COVID breakthrough

Long COVID has turned post-viral illness research into a growth field.

I believe that long COVID has irrevocably changed the “discussion” around post-infectious illnesses. Lyme researcher Vett Lloyd Ph.D. told the British Medical Journal that the change in the medical profession has been dizzying:

“There was a tremendous response from the medical community. It went from ‘this is all in your head,’ to ‘this is real,’ to dedicated clinics, the fastest I’ve seen for any post-infection syndrome.”

Similarly, Dr. Danny Altman, a professor, and director of an immunology lab at Imperial College, London.

 “The knowledge we now have [about Long Covid] is fast forward times 10,” he says. “I know as much about Long Covid in two years as I’ve known about many other diseases in perhaps 20, 30 or 40 years.”

Post-infectious diseases are now considered real and serious. Joanna Hellmuth, a neurologist at the University of California, San Francisco related that she was told by other neurologists that working on post-viral illnesses “was a bad choice of career.” That has all changed, she said, reporting “I’ve gotten emails from people in all kinds of disciplines. There are so many people interested in this problem.”

Hundreds of clinics have probably opened to treat them. Long COVID is forcing medicine to grapple in a real way with symptoms it used to dismiss like fatigue, post-exertional malaise, unrefreshing sleep, and brain fog. Simply the fact that over a billion dollars in the U.S. to understand long COVID – acknowledged by many to mimic ME/CFS – means that neither it nor ME/CFS is going to be shoved into the background any time soon.

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All that has increased ME/CFS’s credibility and recognition enormously – the necessary first step to major change. It may even already be affecting ME/CFS research.

Research

chronic fatigue publications increasing

A short survey suggests publications on ME/CFS may be increasing.

Since it’s research that ultimately leads to better treatments, increased funding is necessary. Long COVID has it in spades. Much more money has been spent on long COVID in one year of the NIH’s Congressionally funded RECOVER Initiative than the NIH spent in 30+ years on ME/CFS.

ME/CFS has reaped few rewards from that funding at the NIH – but it may be doing so elsewhere. (ME/CFS funding at the NIH appears to have received a slight boost – but nothing close to what we need.)

The NIH, though, isn’t the only funder in town. A survey of published papers on ME/CFS on the main medical citation database, PubMed.com, suggests that a rather surprising uptick in ME/CFS research may have occurred.

I searched (using the term “chronic fatigue syndrome”) for papers (studies, review articles/hypothesis papers) focused on ME/CFS, or in which ME/CFS played a prominent role (such as having an ME/CFS cohort in a long-COVID study), published between July-Sept 2020 and July-Sept 2022. The results suggested that a significant uptick in publications that prominently feature ME/CFS, by itself and in combination with long COVID, may have occurred.

ME/CFS Studies

  • July 2020 – 14
  • Aug 2020 – 15
  • Sep 2020 – 17
  • (Long-COVID studies with ME/CFS cohorts or long-COVID papers that prominently feature ME/CFS- 3)

Total – 46

  • Aug 2022 – 27
  • July 2022 – 22
  • Sep 2022 – 28
  • (Long-COVID studies with ME/CFS cohorts or long-COVID papers that prominently feature ME/CFS – 15)

Total – 77

Increased Exposure

new creative approaches to ME/CFS

Many old and new research arenas are being pursued with real vigor for the first time.

It’s impossible to quantify the effect that the increased exposure ME/CFS is getting from long COVID is having on the field. Suffice it to say, though, that ME/CFS has never received the kind of exposure it has now. As long COVID is largely regarded, at least in scientific circles, as a legitimate condition, that legitimacy is also being transferred to its sister disease, ME/CFS.

Old research avenues are being explored with new vigor and new ones are opening up. One of the most striking outcomes, thus far, has been the re-emergence of interest in low cortisol, and EBV reactivation – two of the first subjects studied in ME/CFS decades ago. Both are now seen as possibly major players in long COVID.

Ditto with clotting problems which were never explored with vigor in ME/CFS but are now in long COVID. Blood vessel problems, antibodies, pathogen persistence, the ACE-2 receptor, the autonomic nervous system, and the gut microbiome – have all shown up in ME/CFS over time but were never explored with the rigor or depth that we’re either seeing, or are likely to see, in long COVID.

The NIH’s RECOVER Initiative

The $1.15 billion RECOVER Initiative is a good example of the somewhat subtle, but real, impacts long COVID is having on ME/CFS. No ME/CFS patients are included in it, yet longtime ME/CFS researcher and advocate, Suzanne Vernon Ph.D., called the “massive exposure” the ME/CFS field is receiving in the Initiative “invaluable”.

The Initiative’s “Commonalities with Other Post-viral Syndromes Task Force” – which contains numerous ME/CFS experts – for instance, has been informing the direction the Initiative takes. Hundreds of researchers who very likely never had any interest in ME/CFS are now aware that their success, in part, is a function of their ability to integrate findings from the ME/CFS field into their studies.

Ditto with the treatment trials. Walter Koroshetz, the director of the National Institute of Neurology, recently reported that the steering committee for the long-COVID treatment trials is bulging with ME/CFS (15) and POTS (11) experts. ME/CFS patients may not be in the RECOVER Initiative (yet), but ME/CFS surely is.

Prestigious Studies

Publications linking ME/CFS to long COVID have recently appeared in some of the most prestigious and widely read scientific journals in the world.

It was startling to see the Lancet – the recalcitrant publisher of the PACE trials – publish an editorial, “Long-haul COVID: heed the lessons from other infection-triggered illnesses“, in early 2021 that highlighted the “risk of dismissing patient-reported complaints, the perils of “illness invalidation”, and lauded the opportunity that long COVID, ME/CFS, fibromyalgia and related illness provide “for novel, scientifically rigorous, inclusive, open-minded research.” That’s not the Lancet we know.

The two most widely read scientific journals in the world, Nature and Science, both recently published articles linking ME/CFS to long COVID – leading Solve M.E. to report with regard to the Nature piece, “We (ME/CFS) could not ask for a better exposure on this prestigious platform.”

Leading researchers are now talking about ME/CFS. To take just two examples:

  • Akiko Iwasaki, Ph.D., is a Sterling Professor (a Sterling Professorship is the highest academic honor Yale gives to its researchers). Iwasaki stated, “the more we understand (about long COVID), the more it will help us get a grip on similar chronic illnesses, like ME/CFS, that have been largely ignored for far too long. People are suffering. Answers can’t come soon enough.”
  • Erich Topol MD. (one of the top 10 most cited researchers in medicine) –  “I haven’t had COVID, and I don’t want to get COVID. I’m an older person, but I’m not as afraid of dying from it or even of the hospitalization as much as I am of getting long COVID… We know some of the biology of this condition and how it resembles myalgic encephalomyelitis/ chronic fatigue syndrome.”

Increased Doctor Knowledge and Access

“I learned all of this from the ME/CFS community,” Alba Azola, co-director of the Post-Acute Covid-19 Team at Johns Hopkins University School of Medicine

doctors chronic fatigue syndrome

Many doctors who knew nothing about ME/CFS are learning about it

Alice noted that the few ME/CFS experts are turning more to long COVID – leaving some ME/CFS patients who could have been treated without that option. That’s unfortunate, but they are few and far between, and only a smattering of patients are able to see them. The bigger opportunity for people with ME/CFS lies with the increasing number of primary care and other doctors that are learning about long COVID and ME/CFS.

ECHO Program – Nowhere has ME/CFS probably been more embraced than in the CDC-funded ECHO program. Educating doctors about ME/CFS, in fact, is one of its main goals.

The ECHO website states the ‘large-scale national monthly’ webinar series is committed to rapidly “disseminate post-acute Sequelae of COVID-19 and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome findings and emerging best practices” and is intended primarily for providers who care for patients with Post-COVID Conditions (PCC) and ME/CFS. One ECHO program was devoted to the “History of ME/CFS”. Another to an overview of ME/CFS and long COVID.

ME/CFS doctors/researchers who have appeared on the program include Lucinda Bateman MD, Bela Chheda MD, Hector Bonilla MD, Charles Lapp MD, Peter Rowe MD, Avindra Nath MD, Stephen Gluckman MD, Katherine Ross MD, as well as Jaime Seltzer MS and Emily Taylor.

RECOVER Initiative – The RECOVER Initiative contains approximately 70 sites in which hundreds of doctors are being trained to identify long-COVID patients, most of whom fit the symptom profile for ME/CFS. Given the close overlap between the two diseases, hundreds of doctors are getting an intimate, close-up look at what is essentially ME/CFS.

Long-COVID Clinics – As numerous as the RECOVER sites are, they are being dwarfed by the hundreds of long-COVID clinics that have opened outside the RECOVER Initiative. I don’t know how many doctors in Massachusetts focus on ME/CFS, but Survivor Corps lists no less than 9 long-COVID clinics and California has 23. Whether they are taking ME/CFS patients now or will do so later, these clinics and the doctors in them are getting immersed in understanding and treating people who essentially have ME/CFS.

Changes at the Mayo Clinic – Perhaps the most respected medical provider in the country, the Mayo clinic employs over 4,500 physicians and scientists, and almost 60,000 staff in its three mega campuses (Rochester, MinnesotaJacksonville, Florida; and Phoenix/Scottsdale, Arizona). Ranked the number one hospital in the U.S. for six consecutive years by the U.S. News & World Report’ – what the Mayo Clinic does or doesn’t do carries a lot of weight.

The Mayo Clinic’s reputation for being the place to dig into difficult cases should have made it the place to go for people with ME/CFS, but no medical provider has been more maligned in the ME/CFS community. Stories abound of ailing chronic fatigue syndrome (ME/CFS) patients who, on their last legs, turned to the Mayo Clinic only to meet with ignorant, dismissive doctors.

The emergence of long COVID, however, has caused the mighty Mayo, though, to think again about ME/CFS.

The first evidence of that came when in 2021 Mayo Clinic’s influential “Proceedings” journal published “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management” ,which was co-authored by just about every well-known ME/CFS expert.

Then, in a real surprise, the long-COVID clinic at the Mayo Rochester center invited #MEAction representatives to discuss ME/CFS treatment, research, and improved communication last May. Just four months later, #MEAction announced that it had teamed up with the Mayo Clinic to win a grant from the Society to Improve Diagnosis in Medicine to transform the way Mayo Clinic physicians and Mayo Clinic subscribers diagnose and manage ME/CFS. #MEAction reported that the project will support “long-term education and practices for years to come.”

The Patterson Network – then there’s Bruce Patterson. We don’t know if Patterson’s protocol works, but as of December, Patterson’s network of 150 doctors are all presumably getting schooled in what ME/CFS is.

A Primary Care Explosion in More Knowledgeable Doctors? Dr. Bateman – whose main goal has been educating other doctors on how to treat ME/CFS – has said that she hopes that in a couple of years, not a hundred more, but a hundred times more doctors will know the basics of how to treat ME/CFS.

It could happen. Three things are needed for it to happen: doctors have to learn about long COVID, they have to connect long COVID to ME/CFS, and they have to be provided treatment options they can use. Educational programs like the ECHO effort, and case reports, and the results from clinical trials that show up over time will give doctors – many of whom are likely quite eager to be able to do something for their ME/CFS patients – new options to try. I imagine they will jump on them.

Conclusion – It’s clear that more information about ME/CFS is seeping into the medical system than ever before. Some people with ME/CFS have noticed. Mary Dimmock has told Ed Yong of the Atlantic that before the pandemic, one doctor in 10 might take her sick son seriously. “Now it’s the flip: Only one doctor out of 10 will be a real jerk. I attribute that to long COVID.”

Much remains to be done. The RECOVER Initiative, the ECHO project, and other efforts will help but we need large-scale education efforts to inform doctors about long COVID, ME/CFS, POTS, and similar disorders. (A bill in Congress could help with that).

long COVID treatment possbilities

Old treatment possibilities are getting studied with new vigor and many new ones are being explored.

New Treatment Possibilities

Long COVID may have made its most visible difference in the range of treatment possibilities that are being explored that may be helpful in ME/CFS. Treatments that never received enough funding in ME/CFS are getting funded now, and many new treatments are being explored.

Low Dose Naltrexone (LDN) – LDN has been a mainstay for many people with ME/CFS who are able to see the few knowledgeable and interested doctors available. The NIH has repeatedly rejected efforts to assess LDN in ME/CFS and fibromyalgia but get this: four long-COVID LDN trials are reportedly underway and even better, Yahoo reported that the RECOVER Initiative has shortlisted LDN to be tested in long COVID. Positive results potentially result in LDN becoming available for many more people.

Ampligen – A decade after the FDA seemingly killed any prospect of Ampligen being available for ME/CFS, Ampligen is back and being studied in long COVID. Yes, we would have all loved to see a big ME/CFS clinical trial, but there was no funding for that. There is funding for long COVID, though and that potentially breathes new life into Ampligen’s approval for ME/CFS. Note that because of the past Ampligen studies done in ME/CFS, Ampligen is probably one large trial away from being approved for it. A successful long-COVID trial could open that door.

Ischemia-Reperfusion Hypothesis Opens New Treatment Options for Long COVID, Fibromyalgia and ME/CFS

Many treatments never tested in ME/CFS are currently in clinical trials in long COVID. They include Patterson’s new protocol, stellate ganglion blocks, new EBV drugs and vaccines, mitochondrial enhancers (Accella’s AXA1125), monoclonal antibodies (casirivimab-imdevimab, infliximab, Temelimab), autoimmune drugs, hyperbaric oxygen therapy, home-based brain stimulation, palmitoylethanolamide, atorvastatin, vagus nerve stimulation, cranial electrotherapy, plasma exchange therapy, vortioxetine, zofin, and many others.

The Gist

  • Is long COVID hurting or helping ME/CFS? Alice’s thoughtful blog asserted that not only is long COVID not helping ME/CFS in any systemic and meaningful way but that in several ways (reduced access to ME/CFS experts, diverted researchers) it has actually hurt it. She urged that we should not assume that long COVID will float all boats but need to work to ensure that we get the resources we need to benefit quickly. 
  • Bravo. Alice brought forth some issues we should all be aware of and her conclusion – in my opinion – was right on. As a counterpoint, though, this blog points out areas where I believe systemic and meaningful changes are and will continue occurring. I assert that although the benefits will take some to fully reveal themselves the future is bright for both long COVID and ME/CFS. Much also remains to be done for ME/CFS to reap the benefits long COVID is sure to bring so that people like Alice who are in particularly difficult circumstances can benefit. 
  • Researchers state that long COVID has turned the field of post-infectious illnesses upside down. What was until recently considered a career killer is now a growth field that is the subject of great interest to many.  
  • A billion plus dollars is going to feed long COVID research in the U.S. for years but ME/CFS funding at the NIH has only risen slightly. A 3-month survey of PubMed articles on ME/CFS from July-Sept 2020 and July-Sept 2022, though, found ME/CFS research publications up dramatically (from 46-77). It also found that long COVID studies/papers are increasingly featuring either ME/CFS cohorts or featuring ME/CFS prominently in other ways (from 3-15). 
  • Subjects of interest in MECFS (low cortisol, EBV reactivation, clotting problems, blood vessel problems, antibodies, pathogen persistence, the ACE-2 receptor, the autonomic nervous system,  gut microbiome) are being pursued with a kind of rigor or depth in long COVID that we never saw in ME/CFS. They should add significantly to our understanding of ME/CFS. 
  • ME/CFS researchers and doctors appear to be fully integrated into several committees (Commonalities, Treatment) that are informing how the RECOVER Initiative. Suzanne Vernon Ph.D. called the exposure that hundreds of researchers in the Initiative are getting to ME/CFS “invaluable”. 
  • Chronic fatigue syndrome (ME/CFS) publications are showing up in prestigious journals and well-known researchers from outside the field are calling ME/CFS research a priority. 
  • Doctor awareness of ME/CFS is increasing rapidly as well. The national ECHO webinar series for doctors focuses on both long COVID and ME/CFS. The 70-plus RECOVER Initiative sites, the hundreds of long COVID clinics, and Bruce Paterson’s 150-plus doctor network contain thousands of doctors who are being trained in how to recognize and treat long COVID – and, thus by definition – ME/CFS. 
  • In a startling about-face, the most highly regarded hospital chain in the U.S. – the Mayo Clinic – asked #MEAction to support them in rethinking their ME/CFS program. Subsequently, #MEAction and the Mayo Clinic received a grant to do just that. 
  • Old ME/CFS treatments like low-dose naltrexone and Ampligen are getting the funding they need to move forward plus many new treatments are currently in clinical trials in long COVID. They include things like Patterson’s new protocol, stellate ganglion blocks, new EBV drugs and vaccines, mitochondrial enhancers (Accella’s AXA1125), monoclonal antibodies (casirivimab-imdevimab, infliximab, Temelimab), autoimmune drugs, hyperbaric oxygen therapy, home-based brain stimulation, palmitoylethanolamide, atorvastatin, vagus nerve stimulation, cranial electrotherapy, plasma exchange therapy, vortioxetine, zofin, and others.
  • Plus, positive results from the RECOVER Initiative’s rigorous, methodologically sound treatment trials – and the publicity they get – should quickly spread new treatment options to primary care doctors across the country. Doctors should eagerly embrace the new opportunities that will surely show to help their ME/CFS patients. 
  • Solve ME reported that not only is ME/CFS getting much more media coverage than before the pandemic but that it is more accurate, and has an overwhelmingly pathophysiological slant. 
  • Nine major media articles over the last month or so on the chronic fatigue syndrome – long COVID connection indicate that far from fading from view ME/CFS is more in the long COVID discussion than ever. 
  • I believe that significant progress in understanding and treating ME/CFS is inescapable. How quickly that will occur though is unclear. The field is clearly too small to quickly integrate the research and treatment trial findings into it.
  • Many of our concerns could be easily alleviated if the NIH were to allow ME/CFS cohorts into the RECOVER Initiative. That’s easily the quickest, most efficient, and most effective way for ME/CFS to move forward. Still, I find it hard to believe that the NIH is going to ignore ME/CFS as it unravels long COVID’s secrets. If it does we have Congress to turn to and our constituency and support at the Congressional level has grown greatly over the past two years. 
  • Alice is right – we can’t assume that long COVID benefits will quickly accrue to ME/CFS. Moving forward in a reasonable timespan will require increased ME/CFS funding, more treatment trials, and a doctor education program to ensure that when doctors hear long COVID they are thinking ME/CFS.  Much remains to be done. 
  • An advocacy update is coming up. 

Anticoagulants, anti-inflammatories, and other blood vessel treatments – From thrombolytics (clot-busting supplements) to platelet inactivators to anti-inflammatories, many new treatments (nattokinase, serrapeptase, and lumbrokinase; Clopidogrel, Apixaban, Pantoprazole, heparin, metformin, colchicine, fenofibrate, ergothioneine, and apheresis) that affect the blood vessels are being explored by patients and their doctors.

The RECOVER Initiative’s Treatment Trials – We don’t know what treatment trials are being planned for the RECOVER Initiative, but they appear to be heavily informed by ME/CFS and postural orthostatic tachycardia (POTS) experts – increasing the likelihood that they will apply to these diseases. It appears that many trials will take place. Most importantly, successful early trials will be followed up – meaning that we will finally have good clinical trial data.

While expensive and more risky drugs like monoclonal antibodies would require ME/CFS clinical trials to be prescribed by doctors, many other drugs will not. Doctors will naturally repurpose drugs found to be helpful in long COVID to try in ME/CFS – potentially expanding many people’s treatment options dramatically.

Increased media coverage and awareness

Media linkage long cOVID and chronic fatigue

More media stories than ever are linking ME/CFS and long COVID.

The media is a good barometer of how a disease is viewed because of its tendency to revert to the mean. Solve M.E. reported that from 1987 to 2013, 214 American newspaper articles covering ME/CFS often produced mixed messages about the disease. For instance, the most common comorbidity that was mentioned – depression – appeared in 25% of the articles and gave a psychological slant to the disease. More than half of the articles did not mention how prevalent the disease is, and 20% of the headlines got the name wrong.

In contrast, Solve M.E. reported that not only did ME/CFS get mentioned in the media from 2021-22 about as many times as it had been in the entire past 25 years, but the overwhelming majority of coverage was accurate and affirmed the physiological nature of the disease.

Recently, a flurry of major media articles has explicitly explored the long COVID/ME/CFS link. Why that subject suddenly became a hot item is not clear. Perhaps Ed Yong’s brilliant article, “Long COVID Has Forced a Reckoning for One of Medicine’s Most Neglected Diseases“, kicked it off. Or maybe it was the Sept. 17 feature article, “How “long covid” is shedding light on postviral syndromes“, in the British Medical Journal. Or perhaps it was Brian Vastag’s Sept 5th WebMD article, “Long COVID Was a Preventable Tragedy – Some of Us Saw it Coming“, that triggered the media blitz.

Whatever it was, it began on October 5th with “How Chronic Fatigue Syndrome is helping doctors understand long COVID“, which ended up being picked up by numerous news outlets. Nine days later, NPR proposed that “Medically maligned Chronic Fatigue Syndrome holds clues to long Covid. Just three days later, the Guardian asked – as part of its long-COVID series – essentially the same question: “Can long Covid research unlock other great medical mysteries of our time?“.

Noting that “Anyone can get sick”, the ME/CFS-long COVID connection came up again in the INEWS article, “Will long Covid finally solve the mystery of chronic illnesses like ME?“. Two days later, the San Francisco Chronicle reported that “A long-hidden disease (guess which) is pulled from the shadows by its cousin, long COVID. Just two days ago, the Telegraph thought it was time to ask “What Long Covid might tell us about chronic fatigue syndrome?”

Instead of being sidelined as time goes on, ME/CFS is more in the long COVID discussion than it ever has been.

Advocacy

Long COVID’s emergence has increased ME/CFS’s standing in the political realm – where the biggest opportunities for increased funding and support lie. Check out Emily Taylor’s experience:

“I’ve been working on ME/CFS advocacy since 2015 and I’ve never seen ME/CFS as widely recognized or the demand for ME/CFS knowledge more real. Legislators and their staff are approaching me more often than ever before to learn more about ME/ CFS and ask for the guidance of the ME/CFS community to create policy solutions for Long Covid and other associated conditions including ME/CFS. For the first time, it really feels like we (the ME/CFS community) are valued and there is a concerted effort to recognize and avoid the mistakes of the past.” Emily Taylor, Solve M.E. VP of Advocacy and Engagement

The long-COVID bills currently under consideration (the COVID-19 Long-Haulers Act and the CARE for Long COVID Act) both specifically include ME/CFS. For instance, the COVID-19 Long-Haulers Act specifically states that the Secretary of Health and Human Services, acting, shall disseminate information on long COVID, ME/CFS, and fibromyalgia. 

Alice noted that the insights from long COVID may not necessarily apply to ME/CFS. My guess is that they probably will because they have so far, and that the exercise findings, the low cortisol, EBV reactivation, blood vessel problems, autonomic nervous system, and gut microbiome issues put too little daylight between the two conditions for them to part ways too dramatically in the future.

The fact that both diseases are very complex and quite heterogenous speaks in favor, I think, of their close connection. Finding a single pathogen-specific cause for long COVID could have wrecked our hopes for help, but it appears that the coronavirus has probably been able to produce long COVID in a number of ways – ways that are probably duplicated in ME/CFS.

Conclusion

Alice asserted that “there is substantial evidence that Long Covid is *not* helping people with ME in any systemic, meaningful way”. While I would agree that long COVID has yet to impact most people with ME/CFS in a systemic, meaningful way, I believe that it must already be impacting the ME/CFS field in systemic and meaningful ways. Many, many more researchers and doctors know of ME/CFS than ever before and that is the necessary first step that needs to happen for major changes to occur. It’s also possible that the gains are already showing up in better, more informed, doctor visits.

Alice is right, though, when she says:

“People with ME need to fight for inclusion with Long Covid – in clinics, articles, awareness, research, etc. This is the only way we are going to get the benefits from Long Covid that many assume are already here.”

We can’t assume that breakthroughs for ME/CFS are going to rain down like manna from heaven simply because long COVID is getting so much attention. The ME/CFS field is too small to chase down all the leads or assess all the treatment possibilities that long COVID is going to produce. The field is going to need some help, and that means substantially more research funding, more funding for clinical trials, and widespread educational efforts.

The question is whether that help will come fast enough for the more severely ill. Even for long-COVID patients, it’s going to take time. Two and a half years into long COVID, people with long COVID are wondering when they are going to get help. Long COVID, though, is a new entity that showed up sometime around the summer of 2020. If you give fast-acting researchers six months to get a study funded and started, a year to do the study, and time to write it up and publish it, we’re probably right now mostly seeing studies that started relatively early in the pandemic. Add in the late start from the massive RECOVER Initiative – which is only now just starting to publish studies – and we’re probably at the very beginning of our understanding of long COVID.

That understanding should ramp up considerably over the next year or two as the results of more studies and treatment trials get published. The commonalities found thus far – the similar exercise findings, the EBV reactivation, the low cortisol, the autonomic nervous system, gut findings, and others – suggest that the translation from long COVID to ME/CFS may be relatively easy.

It’s true that ME/CFS will gain simply via its link to long COVID:  we will have better-informed doctors, more treatment options, and new insights. In order to move as quickly as possible though, we need infrastructure. We need ME/CFS research funding and ME/CFS clinical trials. We need a large educational effort to ensure that when doctors learn of a long-COVID treatment trial success, they automatically think ME/CFS as well. Federal help for long-COVID clinics that is contingent upon the clinics accepting people with MECFS would go a long way to ensuring access to health care.

Many of our issues could be, to a large extent, solved simply by getting a large cohort of people with ME/CFS into the RECOVER Initiative. That’s so much more efficient and effective than any other option that it’s hard to understand why the NIH is not jumping at it. Is the NIH really going to sit by and ignore a million people with ME/CFS as it comes up with answers to long COVID? Call me naive, but I find that hard to believe. If the NIH fails to act, though we have a Congress to turn to that is also more receptive to ME/CFS than it has ever been.

Again, I believe some things are assured: real insights into the pathophysiology of ME/CFS, better treatment options, and better-informed doctors are a given. How quickly they will translate into “systemic, meaningful” progress that everyone with ME/CFS will benefit from is another question. Alice is right – we can’t sit back and assume that they will happen in a reasonable time frame.  If we are to move as quickly as possible, we must push to get the resources we need.

An advocacy update is coming up.

Thanks to the Solve ME Initiative for their support in several areas of this blog. 

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