By David Tuller, DrPH
While some medical professionals argue that prolonged non-specific symptoms after acute COVID-19 are psychogenic and that “Long COVID” as a presumed clinical entity was concocted by a cabal of queers and feminists, others are getting on with efforts to disseminate more appropriate information to their colleagues. These efforts often involve drawing parallels with the pathophysiology of ME/CFS.
In the US, where states are generally responsible for regulating health care practitioners, the Medical Board of California licenses and disciplines physicians in my state. The agency also publishes an online newsletter, the Medical Board of California News, four times a year. The July issue includes a focus on Long COVID, which is also called Post-Acute Sequelae of COVID-19 (PASC). It features an account of a nurse suffering from Long COVID and an article—attributed to ME Action–called “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID: What Every Physician Needs to Know.”
This professional partnership with a patient group seems significant. Maybe that often happens with the Medical Board of California News—I haven’t checked back issues. In any event, this certainly seems a long way from when the US Centers for Disease Control was still citing the discredited PACE trial as an authoritative and credible source of treatment guidance.
Here’s a key passage from the article:
“A recent survey of nearly 4,000 self-described COVID long-haulers indicates that 78 percent are experiencing persistent fatigue, 72 percent are experiencing post-exertional malaise, and 55 percent are experiencing cognitive dysfunction six months or longer after acute infection. These symptoms are the three most common among surveyed long-haulers, and all three are primary diagnostic criteria for ME/CFS.”
And here’s a prediction that COVID-19 could lead to a tripling of US ME/CFS cases:
“Rates of development of ME/CFS after infection with SARS, MERS, West Nile virus, or EBV range from 5 percent to 27 percent. A recent paper by the US ME/CFS Clinician Coalition, an organization representing the collective clinical expertise on ME/CFS in the US, estimates that 10 percent of those stricken with COVID-19 will develop ME/ CFS. With the number of COVID-19 cases in the US exceeding 30 million, 10 percent developing ME/CFS would result in a tripling of the existing ME/CFS prevalence in the US alone.”
The article also noted that “long-haulers with ME/CFS symptoms – specifically, postexertional malaise – should consider against enrolling in graded exercise therapies” because these interventions “can be harmful for ME/CFS patients.” It advised clinicians to consult an advisory from the U.S. ME/CFS Clinician Coalition, which highlights the need to consider ME/CFS in the differential diagnosis of long COVID patients. The clinician coalition includes many of the country’s leading providers of medical care to ME/CFS patients.
In a similar vein, the Royal College of Physicians—a professional association founded in 1518 under King Henry VIII–has posted a blog from Dr Nina Muirhead, a director of Doctors with ME, a recently formed organization. (I have been designated an “honorary fellow” of the group.) Her new post is a follow-up to one she wrote in the same venue two years ago, about how her own prolonged struggle with the disease had transformed her understanding of it. She has since become a vocal advocate for improved medical education involving the disease.
Dr Muirhead, a dermatologist and surgeon, was diagnosed with ME/CFS after an acute bout of glandular fever. In her previous blog for the Royal College of Physicians’ news site, she wrote about that experience:
“Eighteen months ago, after seeing thirteen different doctors and undergoing multiple tests and investigations, not only was I given a diagnosis of a condition that I didn’t know about or understand, it was an illness I didn’t believe in…Prior to becoming ill, I had a vague notion that ME/CFS was…related to deconditioning. How wrong I was.”
In the new post, Dr Muirhead reflects on developments in the ME/CFS field in the context of the emerging wave of Long COVID patients. Here’s how it starts:
“In 2019, I wrote to the RCP to share my experience of developing a neurological disease with multisystem symptoms following a virus. This is a disease characterised by symptom exacerbation following exertion, orthostatic hypotension, disturbed sleep, fatigue and cognitive impairment. We are now facing the next post-viral chronic disease challenge, post-acute sequelae SARS-CoV-2 infection (PASC) or ‘long COVID’. Averting the next potential ‘disaster’ is critically dependent on us, as healthcare providers, believing and providing supportive care to our post-viral patients…Long COVID patients are presenting to us, many with a long list of multisystem symptoms strikingly similar to the multisystem symptoms of ME/CFS, and we are on the steep learning curve to recognise this disease.”
A lot of doctors read these and other professional newsletters. If any were inclined to dismiss either Long COVID or ME/CFS as psychogenic or arising from anxiety and excess focusing on symptoms, perhaps these posts will encourage them to take both diseases more seriously.
New Komaroff-Lipkin Paper
In the research realm, two well-known ME/CFS investigators have co-authored a useful overview of possible overlaps between ME/CFS and Long-COVID. In the paper published last month by the journal Trends in Molecular Medicine, Harvard’s Anthony Komaroff and Columbia’s Ian Lipkin cover a range of immunological, metabolic, neurological and other abnormalities identified in studies of these illnesses, and pose questions for future research. Dr Komaroff has presented a useful summary of the paper in a recent blog post.
Here’s a key paragraph from the paper itself:
“The frequency of an infectious prodrome in patients with ME/CFS suggests that, in many cases, infection triggers host responses that culminate in disease. It is plausible that SARS-CoV-2 infection might induce a similar syndrome and that insights from ME/CFS research may be helpful in developing a research agenda for postacute COVID-19 syndrome. Conversely, because ME/CFS by definition cannot be diagnosed until 6 months after symptom onset, studies of PASC may yield insights into early manifestations and biomarkers for ME/CFS.“
And with major Long COVID longitudinal studies already underway, here are “the most important” questions that need to be answered, according to the authors:
“(i) How frequently do debilitating symptoms and functional limitations occur following acute COVID-19, and what risk factors make them more likely? (ii) How often are such symptoms and limitations due to permanent injury to the lungs, heart, kidneys, or other organs? (iii) In patients with symptoms and limitations but without such permanent organ injury (i.e., those with post–COVID-19 syndrome), is there a detectable pathophysiology? (iv) If the answer to question (iii) is yes, is that pathophysiology similar to what has been found in ME/CFS?”
3 responses to “Medical Societies and new Komaroff-Lipkin Paper Highlight Long COVID and ME/CFS Links”
It has been our dream for decades that the medical researchers, medical establishment, insurance companies, and government get their heads out of the… sand, and take these complex diseases seriously. And FIX them.
It seems one of the few positive things to come out of the pandemic, and a horrible way for the human race to learn a lesson. But it seems it took this big of a clout upside the head to get their attention.
Let us hope their attention spans are greater than that of goldfish.
Thank you David for your hard work.
Is’nt it interesting that Dr Muirhead had to see 13 different Doctors to get her proper dx. l had to change my doctors 7 times before l could finally get a Neurologist to find me a M.E Specialist who dx my M.E in less than 30 minutes examination !.
lv had M.E for 45 years and the first 10 yrs . l was misdiagnosed as having RH Arthritis by the first 6 doctors .Then l was told all my physical symptoms was all in my head. The 7th doctor thought l had M.S so l was sent to a Neurologist then finally a M.E Specialist ..Those first 10 years of my suffering was nothing more than sheer torture as l pushed myself though the physical pain, and worse , the emotional pain of not being believed. No human being should have to go though that and l pray that at last, all Doctors will finally educate themselves on M.E.
I have not yet read the papers by Komaroff and Lipton, but I will soon. Certainly their insights will be more detailed than mine. I seem to have read somewhere that ME/CFS is a post-infectious event that affects the vagus nerve. That would put it in the same category of diseases as Guillain-Barre syndrome (GBS), which affects the peripheral nerves. No one would argue that GBS is psychogenic. It is possible that antibodies and T-cells against SARS-CoV-2 raised in the course of COVID-19 could attack the vagus nerve. In this case, the generalized treatments that are often used against GBS – IVIg and plasmapheresis – might be tried in long COVID/PASC.