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…”
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 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.
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
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
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
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, Minnesota; Jacksonville, 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).
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.
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.
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
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.
Thanks, Cort. I was hoping to hear a response to Alice’s piece from someone. (And from someone who would acknowledge the points that Alice got right.) Your research here is thorough and feels un-slanted, and as a result provides some optimism. But my heart still aches for the people–especially the severely ill–who have to again hear, “Just wait a little longer.” God bless you all.
This research has just been published in Frontiers, on ME and covid/longcovid. Just wanted you to see it: https://www.frontiersin.org/articles/10.3389/fimmu.2022.949787/full
Thanks Kajsa!
Great Article!
I’ve had ME/CFS as far back as I can remember, and (thanks to Covid-19 & Longhaul Covid) my ME/CFS is worse.
I find it exciting that we may get some answers, but it may be a little too late (for me anyways).
I may have been able to work towards retirement for decades but Covid-19 put an end to that.
Along with so many “dismissive” doctors who don’t know what to do with us, comes the denial of SSDI benefits.
It’s all been an embarrassing slap in the face.
It’s one thing to live from paycheck to paycheck, but to have no income coming in is another.
The fatigue & brain fog is so ridiculous…it compounds the frustration of advocating for ourselves & negotiate some kind of financial strategy to live, let’s not forget about that.
We NEED HELP…
Thank you for this article. Alice has some very valid points, yet I also feel like when looking at international research and attention, a lot is going on for ME/CFS that would not have happened in the last 3 years if it wasn’t for LC. Too little too slow, but it’s undeniable that the diagnosis is a lot more accepted now and new research is being pushed.
Just got back with an interview with Avindra Nath – I asked him if he was concerned about the ME/CFS field being to integrate the findings from long COVID – he’s not at all concerned: there is just too much interest. That was good to hear!
Thanks so much for this article, Cort. Alice is right that we can’t take it for granted that ME will be along for the ride with Long Covid. But for me, the prominence and additional research with Long Covid has given me hope that I didn’t have before the pandemic. And a way to talk about ME that a lot of people understand – it’s similar to Long Covid ! Ps. the work you do for us, Cort, is a true blessing for our community.
Cort, Many “thanks” for your dedication. I had to read Erich Topol’s quote five times to believe what he was actually saying. The opinions of “world renowned” researchers like Dr. Topol have a tremendous impact on the attitudes of other Biologists. And, boy we need an attitude change at the NIH. Dr. Younger’s “common sense” research protocol for eliminating the non-functioning enantomer in LDN was rejected by the NIH. Now, all of the sudden, we have 4 LDN studies underway. AIM Immunotech was considered a collection of snake oil salesmen, and forced to leave for Argentina. Now, Ampligen is being taken seriously! Cort is correct. Covid changed everything for ME/CFS.
It really is something to see those treatments turn around like that. We are just seeing the tip of the iceberg. I just interviewed Avindra Nath and he said a ton of work is coming down the pike over the next year. 🙂
Ampligen will never, ever be approved for ME/CFS, for several reasons:
First of all, it’s astronomically expensive.
Secondly, it requires infusions done at a doctor’s office.
But mainly, it won’t be approved because it’s not effective. In the 2012 study that found “benefits”, those benefits were an increase in exercise tolerance by…wait for it…96 SECONDS. And that’s after 40 WEEKS.
One can improve by more than that just by resting and pacing.
Thanks Cort! May we all have the answers we need very soon.
Agreed! We are going to learn a lot that’s for sure.
I still feel abandoned.
I have a doctor who believes that I have this post-viral illness thingy – and she has no protocols to follow to make me feel better or function more effectively.
She was unsuccessful at getting me new/better pain meds before and after surgery – so I’ve had a month of excruciating pain and roiling side effects. She needs guidance, experts, written stuff, courses for doctors…
I’m still ‘it’ when trying to get some help from her – and I really need it to be the other way around.
Did you try low dose Abilify?
There is a little study at Stanford of its efficacy in ME.
Maybe you can show the study to your Dr and see if she could prescribe it to you because it is a quite safe and easy to take med.
Best wishes!
I’m already on ldn – at my own initiative and titration; she kindly put it in my medical record before surgery so it would be ‘official.’
Abilify has a nasty habit of putting significant amounts of weight on people who are already heavy enough – I can’t take that risk. That’s the kind of thing where guidance is critical. I read up on things.
I’m also incredibly sensitive to medications – and have already been through a horrible period recently – I need CERTAINTY, not my physician flailing about, ‘trying’ things that ‘might’ help.
I went to Stanford for surgery – they don’t even talk to each other about ME/CFS patients – I asked the anesthesiologist to communicate; it was obvious they hadn’t; the travel made it prohibitive for routine anything – it was bad enough staying in a motel around the pre-surgery trip and the surgery one. I insisted on a video visit after because I was so crashed (surgery was fine, and worked; the pain management, NOT).
It needs to be knowledge that is in more places, I think. And maybe a way local doctors communicate with specialists. Assuming there is any useful knowledge at this stage or soon. The patients should NOT be educating the doctors – they don’t listen, not as a class.
i couldn’t tolerate ldn or abilify. stanford did not help me and i don’t appear to be getting younger. 35 years of this.
That’s the thing – nobody has answers yet. I asked Nath what he thought we would learn over the next year from long COVID and his eyes widened – really a lot. The research really is in its infancy and there’s tremendous interest in it.
I hope you can find something for your pain and hold on knowing that a lot is going on and there is hope.
Thanks, Cort. We keep hoping, but even with this HUGE cohort of people CLEARLY affected by ONE virus, the research is frustratingly slow (for the patients), while a subject of wonder for a while for those who need a research focus – and may or may not find THEIR theory explains some small part.
I’ll be here in ten years, forty three years ill, if anyone gets around to doing anything for us old-timers.
The numbers aren’t good: if you’re recently ill, maybe you’ll recover; if over 2.5 years (I’ve seen mentioned), you’re out of luck.
Meanwhile, I write novels with an ME/CFS main character – and some readers are enlightened, they tell me.
And anyone who asks nicely, and promises to CONSIDER writing a review, gets an ARC. Slow processes, writing – and recovering.
Hopefully all the folks commenting last time and parroting the negative perspective, can let go of the negative emotions they might be holding on to, and enjoy the optimism.
The facts in this blog have completely nullified the pessimism and negativity harnessed in the previous blog – which appears to have been well wide of the mark with its position that LC is hurting ME/CFS.
If this was strategic by this site, with the goal of helping PWMEs get over an emotional hump (by exposure and then release), well done. If not, then I’d seriously rethink publishing that sort of negative and unbalanced blog in future. It’s was unreasonably biased, lacked facts to back up its position (or was un/intentionally blind to all the ones presented here) and potentially harmful to the patient community by adding to an already heavy emotional toll.
Really, if it were being in anyway reasonable, it would have stated something like “here are a few ways LC is or may be harming the ME/CFS community”. Instead it was absolute in its position and just an example of someone projecting their negative emotions onto the community.
It was someone sharing their opinion and reflecting what a lot of people think – in response to what has been messaging from nearly everyone, that ME was essentially being sorted by long covid, when That’s far from the truth. There is nuance and there are positives but there are also a whole heap of issues, and continuing injustices especially for the more long-term & seriously ill, including the NIH acting as if all the subsets, stages and severities Of #ME are catered for by a $b investigating a PVS triggered by a specific agent with an illness less than 2 years.
I don’t know of anyone saying that ME/CFS is being sorted.
My issue is that the position of the author is preposterous when all it takes is a few seconds or minutes of web searching to find examples that refute it. I even provided an example from this very site.
The fact it was so easy, made it obvious that the author was uninformed and arguing from an emotional and somewhat ignorant position.
I’m sorry this blog took so long to get out. Alice’s viewpoint wasn’t mine but I thought it was well-considered and deserved an airing. I want Health Rising to be open to alternative viewpoints.
One thing writing this blog for me was to solidify the impact long COVID is already having. I didn’t realize, for instance, just how many long COVID clinics there were. Nor was I aware of the recent rather dramatic flurry of news articles focused on the impact of long COVID on ME/CFS. Ditto with all the long COVID treatment trials – I was stunned by the variety of trials underway.
One thing I didn’t bring out was our ever-enlarging constituency: I imagine we have many times more researchers and doctors interested in ME/CFS now. Some of them will inevitably be in a position to make things happen – and I expect things to happen that we can’t anticipate right now.
Your issue, ManShadow, is your condescending attitude and I’m surprised Cort let your comments stand. This isn’t spiritual text or written law. Do you have ME? What are your hopes and fears in the context of this topic. Rather than blast others with condemnation, how about sharing why you feel so much anger about this topic?
I think the two posts are complimentary. The feelings, fears, hopes of the community matter & shouldn’t be subject to such a personally brutal assessment.
The article was unbalanced, biased and potentially harmful.
Imaging for a second, being a newly diagnosed PWME potentially dealing with depression, anxiety, trauma, grief and suicidal ideation, coming and reading such a hope destroying article.
A change to the heading, a softening of the stance of the author and a side panel showing evidence to the contrary (such as in Cort’s blog in this page) would negate this somewhat.
If the absolute position of that blog were true, I’d have no problem with it. One of the best lessons for me early on after diagnosis, was a blog entry about accepting reality as it is and not pining for some imaginary version where everything is peachy. The blog by Alice serves up a big dose or reality, and that’s a healthy thing.
The blog does make a lot valid points and does a good job of tempering PWMEs who might be getting carried away with optimism and unreasonable expectations that LC research will find a cure for us.
The potency of my reaction to it comes from two sources – my gut feeling to the heading and first few paragraphs, was that the author is presenting a biased perpsective as fact, and secondly, that there is easy to find info to refute the author’s position.
The reasons I’m not linking articles or presenting research to refute the blog, was a deliberate choice to mirror what I see as the laziness of the author. Same with my choice to present my response in black-and-white terms just as the author did for their’s.
That’s probably petty and a bit lame, but again, I still feel all these weeks later that the blog in question doesn’t deserve anything better than that.
And as to your question, the answer is in my username.
I’ve been following this issue pretty closely, and frankly, it seems to me the only way it helps people with ME/CFS is if they tell people they have Long Covid. (I might indeed have it, since I’m worse since having covid in May this year; but I think I’m worse because of ME/CFS).
Possibly the other way Long Covid can help us is to tell people who are willing to try to understand, that ME/CFS is like a really bad case of Long Covid — that lasts for the rest of your life.
The fact that Long Haulers don’t want to acknowledge us, for the most part, is pretty disgraceful.
Hopefully, only a small percentage of long haulers are in that boat – and hopefully over time your doctor will treat you better and have more options for you. I just don’t see how that can not happen when the positive long COVID treatment trials start to show up.
To me, the crux is, Will the long Covid attention (clinics, doctors, research) be broadened to other post-infectious diseases?
We’ll just have to see.
I’ve been burned too many times by the same institutions that are opening these new clinics.
So I’ll wait until there’s a definite sign that they’ll accept me (as Bruce Patterson has shown).
I think that for now, we just have to wait and see–we just don’t know yet. The proof will be in the pudding.
One way for people with ME/CFS to get access to Long Covid medical help, is to say we have Long Covid to our doctors. As the disease names are just semantics.
For example MedScape published recently that 50% of Long Covid fits the ME/CFS criteria.
So why wait at the back of the queue with the name ‘ME/CFS’ when we can move to the front by telling our doctors we have since developed Long Covid, the symptoms are identical anyway. And we’ve waited decades too long already.
Sometimes ‘you have to break a fingernail to get the job done’
I totally agree! I have already started telling doctors & others in the medical field that M/E is long covid and they actually sit up and take notice, I think because they relate better to long covid. As you said the disease names are just semantics. So yes, why wait at the back of the queue. You have to do whatever it takes to get the needed help you need.
Personally, I prefer TCM over western medicine because they understand & treat disease a lot differently AND it works. What impresses me is how they look at the body as a whole and treat the symptoms by use of natural means – but at the same time without harming the body (which unfortunately is what happens with many synthetic drugs & their negative side effects – as has been the case with most medications that have been prescribed for me in the past 29 years). It’s not that I don’t use western medicine, I just try to be balanced in their use now after many years of trial & error. Mostly I’ve had to be my own doctor, as most of us have had to be…the sad but true reality of this chronic & most debilitating illness!
;
Let us be thankful there are still people plugging away on ME. This study looks to be very interesting and might jive with what Bruce Patterson has been saying about monocytes…
https://www.biorxiv.org/content/10.1101/2022.10.13.512091v1.full
Very intersting, thx for posting it!
Monocytes! Yes, indeed – very interesting! Thanks!
Thanks Cort for this blog. I have not read the previous blog mentioned, and am only speaking from personal experience. Almost 11 years ago I was daignosed with ME and put on GET. Yes, I know. Through those early years every doctor I met had no clue about ME/CFS, not an iota. Fast foward to January 2022. When after I took the first vaccine dose of Pfizer, I crashed 2 hours later and then spent months in and out of hospital seeing consultants. Three in total. When I went to visit the first I brought a set of A4 typed up sheets with me so as to explain what ME is and what was “normal” for me and what had changed post vaccination ie increaed fatigue/lack of functioning, as it rutned out, that first consultant and even the second, begain explaining ME to me! And they asked questions such as who was at home to help me, it took 11 years to reach that point and the only reason it was reached was because of LC. Anotehr doctor I met, quizzed me re who I’d seen in those 11 years for help, her reason for asking was for a medical friend with LC. I was blunt and told her the truth. No one could help. Then came the 3d consultant, and the first to remaind me of 11 years prior, she had no clue and I didn’t waste my time on her. And then when I thought I would have to suck up the ill effects of vaccination, came the added tag of “Long Covid post vaccination” and that led me to a new consultant who put me on melatonin and LDN and supplements for brain and immune inflammation, along with telling me ME/CFs and LC in his opinion are the same thing. He’s studying the studies on ME and LC, he’s interested in helping patients, he’s listening and he’s trying. Through his notes, I’ve now managed to relay his information back to GP who may in turn help others. That’s how this is going to work in my opinion, patients will connect with doctors who are studying LC and who in turn will share their notes with other doctors who in turn will help more patients. It is going to take time but if it weren’t for Covid-19 we may well have had to wait a hundred years just to get to where we are. We have to grab onto LC, use it to our advantage and those who can access LC doctors, should.
That is so good to hear MC – just, so good to hear! I hope your experience is copied many times over the next year by many people. Thanks so much for sharing it 🙂
From a webinar Dr Amy Proal did, I thought that she was raising micro clots with Dr Resia Pretorius just before Covid hit, for #ME, which might have been why that avenue took off so quickly.
In my opinion ME/CFS and all its subsets, stages and severities should have had all the same recognition and resources as MS over decades, we are owed that. We would never have ALL MS research suddenly devoted to focus on an “under 2 years Ill” group who have not been subject to the same harm that most pwMS have had (in the case of ME harm through poOr management & chronic, unmanaged illness) & potentially share a different trigger.
Thank you for posting Alice’s article.
It’s important to acknowledge that help will not come soon enough for many, many people.
It’s encouraging that more acknowledgement and research of post-viral illness appears to be coming as a result of recent events. The two “viewpoints” are not mutually exclusive.
I have found the ME/CFS community to be supportive unlike any other. I hope that this blog can be an extension of that community, existing without toxic positivity. We can hold onto hope while also validating peoples’ (like Alice’s) experiences and opinions.
It is taking time – we are 2 1/2 years into long COVID – and it is going to take more time but hopefully, less time than we think. We are, hopefully, just seeing the tip of the iceberg regarding all the work going on in long COVID. If that’s true – we really have something to look forward to.
I would check your biases.
The “facts” in this article are more anecdotal than the facts in Alice’s article.
Agreeing with something just because it fits your prior conceptions just shows a narrow minded viewpoint that is resistant to change.
Also note that cort says he largely agrees with what Alice wrote, but you seem to have missed that part. You also seem to have missed the part about benefits for people with me needing to be systemic rather than one off.
The initial blog was absolute in it’s position. Which is absurd in itself – no one is claiming LC has delivered tangible benefits, but it has changed the landscape for ME/CFS and those changes will see benefit to us.
It was also ridiculously easy to beat the challenge the author put out.
There were many valid points in the blog, but the credibility was hugely undermined by the absolutism and the fact it was such a simple matter to prove wrong.
Yes, I clearly have biases, but they don’t appear to be as strong as Alice’s are on this topic. The blog got people talking, which is a type of success, but it was also undermined by its absolute position and potentially dangerous to PWME already struggling with this ridiculously burdensome condition.
Thanks Cort. You always do such a marvelous job with your articles. I have discussed long covid vs ME/CFS with several of my doctors. They all agree that long covid IS THE SAME as CFS, it is just that the viral trigger is Covid instead of Epstein Barr, or flu, or any one of a number of viral illnesses that some people just never recover from. The only difference is that with Covid, a whole lot of people got sick all at once and all from the same virus. So they could not be ignored – there are just too many of them. I do not understand why they have to be separate at all. They are the same thing. Has anyone tried to point this out to the powers that be?
One of the really kind of side issues is what to do with ME/CFS and the long COVID that is ME/CFS-like. If they are really so similar then they should be called the same thing. If they are significantly different they should be called different things. Right now they look really, really similar.
People are more and more talking about ME/CFS as if it’s a “post-viral” illness. That was discarded way back the few years after the Incline Village cluster outbreak. As it was explained to me, it was at one time thought to be chronic Epstein Barr until they found many people living with the disease that did not come by it via a virus. Up until Long-COVID I believe it was not considered “post viral syndrome”. Many of us have be living with and advocating for the disease for decades with the understanding that Epstein Barr was one way to get it. I feel rather thrown under the bus, if the community’s position that those of us who became sick without first having a virus are no longer people with ME/CFS.
Long term psycho-social stress is not what causes ME/CFS. The disease has been stuck in that rabbit hole for decades. It was probably suspected and accepted that Gulf War disease could be caused by that type of stress. After all these decades, we found the “burn pits”. What a waste of decades of lives to go down that rabbit hole. Stress and trauma in ME/CFS is bodily, like you said, a car accident, surgery, etc. Please, please, let’s not go backward.
Chris, Many people have ME/CFS that did not result from Epstein Barr or COVID, like myself. In the past, there use to be other ways to come by it that had nothing to do with a virus. So, either we, in the past, never had the same disease or there’s more to it than a virus or post viral syndrome. Doctors unfamiliar with ME/CFS are not, IMO, sufficiently knowledgeable to make such conclusions. I hope for the best for all of us and that science will get to the bottom of this disease.
Yes, the range of known onset triggers for ME/CFS including non-viral. My theory is that all known viral and non-viral triggers (such as operations, accidents, vaccination, chemical exposure and – yes – also a subgroup with presence of high psychosocial stress – there’s a close link between the stress and immune systems) have in common that they involve a strong activation of the immune system (“immune challenge” as Renz-Polster et al. call it in their neuroglia paper, or immune “insult” :-). So I believe that yes, it’s the same disease, with variations in subtypes.
JR – Thank you for your response.
Yes, JR is correct. IMO, it’s almost ALWAYS a combination of factors, including chronic, long-term subconscious stress or trauma. Or multiple traumas, going back to childhood. Many studies back in the 1980’s and 1990’s showed this over and over, but patients pushed back because they thought it meant it was all in our heads.
It DOESN’T. It just means that we have a higher level or perhaps a lower threshold when it comes to stress tolerance. We’re always stuck in ‘fight or flight’, just like Naviaux’s study that showed a ‘cell danger response’.
Here’s a study that in fact showed folks with childhood trauma had a six-time greater chance of getting Long Covid.
https://www.medrxiv.org/content/10.1101/2022.02.18.22271191v1
Marcia, thank you for your reply! In my own words, I like to make a distinction like that: ME patients were often belittled by suggesting their disease was just a state of “being stressed” – of course that’s not what ME is. But stress as far as I know is also a metabolic state involving the immune system and an epigenetic mediator, I think I’ve seen least one other autoimmune disease where stress is established as an initial onset trigger, and a review showing that high stress or chronic high stress can leave behind long-term physical changes in the body that persist after the psychosocial stressor is gone. I think there are other diseases whose onset is today explained using a vulnerability-stress model (i.e. genetic predisposition but there will be only be outbreak of the disease if epigenetically triggered by environmental factors). So while the pathomechanism of ME is different from “being stressed”, the metabolic circumstances around a high stress event or chronic high stress reaction could however – in a similar manner to an infection event – have contributed to initially triggering the ME disease pathomechanism which is different from the stress reaction.
There’s also the fact that if I remember correctly newer research shows a possible role of neuroinflammation in psychiatric illness such as depression (which can be trauma-related), too. So I guess there might be prior neuroinflammation, possibly enhancing vulnerability for ME assuming it involves neuroinflammation, too.
As much as I have written to journalists to make sure they mention non-infectious triggers for ME and gradual onset, too, I think it’s probably necessary to focus on post-viral at this stage, so as to firmly establish it as a biomedical disease in a first step.
I would like to see the money that long covid gets for ME/cfs.
and not all ME/cfs patients are from infection. that is now totally forgotten.
and i would like to see it in the whole world.
Yes, the post-infectious subset is getting all the attention and it probably should – that’s where the interest is now. At some point, though, the non-post-infectious subset – of which I am one – will need to be addressed. Thus far not that many differences have been found between the two. Time will tell, though.
the long haulrs are saying how long still. they are only a few years ill, not that i wish it anyone. but I am waiting 30 years somewhat, lost count…so, so many of us!!!
how long for us? with no money and not global?
i want the money for long haulers excactly as for all ME/cfs-worldwide.
is it not a descrase that the only big research is the uk decodeME study?
and i want it everywhere (globally) and i want adapted homes like for MS. where i could got to and with me, many of the 25%ME
and i had infectious triggers and others like to hot summer, etc a whole lot of triggers in 30 years.
i can not wait any longer and with me many others to!!!
Cort, thank you so much for not only posting Alice’s essay but for doing the legwork here and respectfully posting counterpoints. I agree that there is room here for both. Many appreciated Alice’s essay, so it can’t be all wrong, at least in sentiment.
I am a 2.5 year long hauler who also has the ME/CFS diagnosis. I am active in many Facebook groups for long COVID and ME (but mostly LC). I would say the majority of long haulers are NOT dismissive of ME/CFS (someone above said they were). There are a few LC advocacy groups that prefer we only stick to LC when doing advocacy or media appearances. I outright refused. Felt like a slap in the face to me of those who came before us. But again, this is not the norm. Most are supportive, if not dually diagnosed like me.
Two other points. To the person who advised ME sufferers to just tell a new doctor you gave long COVID: I wouldn’t advise this. There are still many practitioners who aren’t taking LC seriously. Also, Solve M.E. just did a webinar (it’s on their YouTube channel) with a German researcher who discussed the key overlaps and differences between ME and LC. They can be very different. If you have to educate your own doctor, you might as well educate them in the illness you actually have.
Lastly, Cort, you mentioned long COVID clinics. The vast majority of long haulers who have gone to most of these (including me) have very poor feedback. I will be quoted anonymously in an article coming out about this soon in Scientific American. Our big hospital in my area thought to open an LC “clinic.” Their thinking was “we have all these specialists under one roof, so it makes sense.” That’s about as far as the sense-making went. The first visit is with internal medicine – the docs who started the clinic. Very caring, great listeners – I know I cried in that first appointment, after being gaslit and disbelieved most everywhere else. That part was great. But then you quickly realize there’s no further substance to it. They knew nothing about the latest studies or treatments. I had to be the one to bring Bruce Patterson and IncellDx to THEM. No willingness to prescribe meds on his protocol. But the worst part? Getting referred to their in-house specialists and having them say one of two things to me: “We have a post-COVID clinic?” or “well, how do you know you had COVID?”
Yes. I had to tell their own specialists that their own institution had a post COVID center. I also had to repeat my whole story to every one of these specialists. If there is no other point to having a post COVID center, it should be that their docs can read your notes and history contained in the same electronic records system so that you don’t have to repeat your story. And also, if the post COVID center at your own institution accepted me as a patient (w/o a positive COVID test), then you shouldn’t be questioning whether or not I had COVID.
There are maybe a few exceptions. I’ve heard Mount Sinai in NYC is good and maybe one in Southern California. But mostly they are a huge disappointment and ultimately a waste of time and (precious little) energy.
Thanks, Amy. I’m not surprised. I would hope that they would be improving rapidly (but perhaps not!). They likely have no little or no history with ME/CFS or long COVID (since it’s so new) and probably know almost nothing about them. I see them as holding stations for the better treatment options that will arrive over time. The most important thing about them is that they are there.
It sounds like they’re trying to do this on the cheap, though. Obviously they need someone in charge who knows about ME/CFS and long COVID. Why would they assume that specialists know anything about those diseases?
I’m often surprised about the lack of curiosity in some medical professionals. The information IS out there – we’ve produced several consensus documents on diagnosis and treatment. All they have to do to get the basics under their belt and start helping people is to access them. I’m going to try and get in touch with some of them.
Great piece as always Cort, it sure feels good seeing all the efforts being made lined up.
I just published an article suggesting specialised nurses and home support would be more helpful for most than fancy specialist clinics.
It’s written from a New Zealand context but probably relevant everywhere.
https://thespinoff.co.nz/society/25-10-2022/if-you-get-long-covid-whos-going-to-help
In an update from Germany, institutions slow to change (trouble with institute contracted by Health Ministry to assess state of research/treatment).
But today: I have a psychiatrist since 10 yrs as my ME/CFS started gradually and was first thought to be depression/burnout. He still prescribes me low dose trimipramine for sleep. Today he did a telephone consultation with me – which his practice had actively suggested after I had not been able to visit in person due to loss of mobility ca. 1 yr ago.
During that telephone consultation, he actively brought up that I had mentioned chronic fatigue syndrome to him in the past, and wanted to know whether there were any new treatment avenues with regard to chronic fatigue syndrome.
When I said my working hypothesis was that I have ME/CFS, he seemed okay with it.
It was a good talk and I felt cared for by this doctor and practice, and grateful for it. The fact that they actively made an appointment happen on the telephone and inquired about ME/CFS meant a lot to me in my situation.
I am noting a change from when my doctor was more sceptical re. chronic fatigue syndrome, same with my GP.
In theory, attention for LongCovid might wane if say tomorrow SARS-Cov mutated to not cause LongCovid anymore, or a breakthrough vaccination/medication nipped any Covid infection in the bud and would stop people from getting LongCovid – but I don’t think that’s very likely to happen.
I think even if institutions are slow to change, Covid has enhanced awareness at the level of society, practitioners and researchers, and changes in minds are likely to remain.
Have a good day, everyone!
Research might be increasing but before praising the rise in Long Covid clinics, how many of those clinics are officially or unofficially recommending graded exercise therapy and doing more harm than good?
The one I went to (which I do not have high praise for – see above) did not recommend exercise therapy. They at least knew that much. But that was the internal medicine doctors who started the “center.” I don’t think their hundreds of specialists scattered around their huge campus all know not to.
I had a pulmonologist (unaffiliated with the post COVID center) tell me I was deconditioned after listening to my lungs and sticking a pulse oximeter on my finger. So I switched to another pulmonologist in the practice recommended to me by a long hauler friend. This doc started defending his fellow doc (it felt like “bro code” protection), until I shoved the results of my recent CPET under his nose. He then told me this was all “above his pay grade.” I didn’t realize reading and thinking were beyond the scope of a six-figure salaried doctor’s skill set. To his credit (I guess), he did actually read it. He never mentioned exercise to me again.
Glas to see you haven’t lost your (black) humour, Amy! ;-), your recounting of this doctor’s complaint made me laugh.
Same in Germany: I think a few good LongCovid centers, but others that are a complete miss, and it seems to be bad with state-run rehabilitation clinics who in many cases just repurposed and relabeled their existing routine of activating therapies as LongCovid rehab.
Humour aside, I often thought it might be a problem that there may not be a targeted LongCovid (incl. ME&CFS) research newsletter for practitioners. We patients read this blog and follow MECFSnews etc. on Twitter. Even Stingl (the Austrian neurologist who specialises on LongCovid) says he keeps up to date via Twitter and pubmed. But I can’t imagine many doctors doing so.
I’m sorry but “long Covid” is as non-descriptive and stupid a name as Chronic Fatigue Syndrome. Was the naming delegated to a focus group of 5 year olds?
It appears to have hijacked ME in a the same way CFS did in 1984 too, which got ME precisely nowhere in terms of furthering research. No health authority has cared enough for the past four decades to invest any proper funding into investigating the cause of ME – does anyone really believe that all this pearl clutching over Long Covid is going to result in actual progress? I’m sorry, but I simply don’t believe it
The term “LongCovid” was coined by LongCovid patients themselves, I think in the initial patient-led publication that first brought attention to LongCovid. There are quite few arguments why it’s a better name than for example PASC https://wellcomeopenresearch.org/articles/5-224 , one being that it tells the public very clearly that you might not get better from a Covid infection. Also ME is one significant group besides other post-Covid complications, so the term is inclusive to all.
There’s nothing new or special about post viral syndrome following infection with a virus. It is therefore meaningless to name it after the virus that triggered it, even more so when that name is both non-descriptive of symptoms and suggestive of a virus persisting long term, which is almost certainly not the case. It’s junk science of the type that gave us the term Chronic Fatigue Syndrome, which set research into ME back decades
“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.” – Has anybody asked the NIH to do this or queried why they have not done so?
I sent in that question – will let you know. 🙂
Agreed, “People with ME need to fight for inclusion with Long Covid – in clinics ..” M.E. patients desperately need access to neuropsychologists, exercise therapists and occupational therapists. As the RECOVER initiative spokesperson recently said “pace yourself and how to gently bring back your aerobic fitness.” Mindfulness, positive thinking and rehabilitation exercise seems to be the way to go.
I’m a senior(79) w/no hope for changed attitudes & care in my lifetime. Health issues for me began as a young child. I was eventually diagnosed w/chronic fatigue immune disorder syndrome (CFIDS) + Fibromyalgia decades later. Throughout my lifetime other diseases & conditions have become an additional burden. LC is not the same as ME/CFIDS/FM in my opinion. Sure, there are similar symptoms, but it has not been proven that LC has the associated illnesses as ME/CFIDS/FMS. Two to three years is not an adequate amount of time to make a comparison to a lifetime. I would hope that the misconceptions, biases, labeling, misinformation, etc., will enable the medical community to finally understand & accept the injustices done to those afflicted w/ME/CFIDS/FMS.
The first time I read about long COVID, I said aloud, “This is M.E. !” I was diagnosed 15 years ago with ME/CFS, after suddenly being unable to continue to work. My income dropped over 70%, I gave up my car and lost any social life. Millions are still missing, and it is my sincere hope ME gets the attention it deserves.