The linkages between ME/CFS and Long Covid
A deeper look into what's destroying the lives of many LC longhaulers
Like many others, I developed Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) as part of my Long Covid (LC). Before LC, I had never heard of this disease, despite millions of Americans already suffering from it well before the start of the pandemic. It’s an invisible but large group - millions of Americans are bed-bound or have died from ME/CFS, and most healthcare providers don’t believe it’s real - despite it having very real consequences on the lives of those who suffer from it (and ME/CFS caretakers).
It took about 2.5 years into my LC journey for my primary care physician to finally diagnose me with ME/CFS (after me asking her about it dozens of times). There are no solutions or cures to this illness, and the diagnosis doesn’t change much about my daily reality, but the sheer acknowledgement that it is my real, lived experience means a tremendous amount to me. I’m just sad it took so much effort to get here. And sad to know that millions of others don’t know what they have and/or will never find a PCP who believes them.
Today I’m going to explore ME/CFS - particularly as it relates to Long Covid - since it’s a frequent comorbidity and cases seem to be on the rise since the beginning of the pandemic. For the record, I am neither a doctor nor scientist, just a very aggrieved and chronically exhausted ME/CFS patient that is trying to learn, understand, and share.
ME/CFS in a nutshell
No one takes you seriously when you say you have chronic fatigue syndrome. The very unfortunate nomenclature implies that people with ME/CFS (like me) are just sleepy or tired, or maybe don’t sleep well at night. Or we have chronic insomnia (which yes, can be the case, but is not necessarily linked). Or we’re just lazy and want to stay in bed all day. None of these are the case. Unfortunately, if you use just the “ME” part of the term (Myalgic Encephalomyelitis), no one has any clue what you’re talking about.
Here’s a basic overview of what ME/CFS is and what living with it entails:
ME/CFS in the United States
ME/CFS “is a complex, multisystem illness characterized by activity-limiting fatigue, worsening of symptoms after activity, and other symptoms. It affects all age, sex, and racial and ethnic groups and costs the U.S. economy about $18–$51 billion annually.” For such a tremendous financial impact, it’s actually pretty incredible how little the government cares to address it.
According to the CDC, ME/CFS affects at least 3.3 million Americans (though probably closer to at least 4 million), many of whom have not been diagnosed (an estimated 90%). That number is definitively much higher now given what we know about the linkages between Covid and ME/CFS (more below).
Some more “fun” stats: ME/CFS is more common in women than men across all ages, and women may also experience more severe ME/CFS symptoms than men.
According to the CDC, “White non-Hispanic (1.5%) adults were more likely to have ME/CFS compared with Asian non-Hispanic (0.7%) and Hispanic (0.8%) adults.” Additionally, there seems to be a socioeconomic component to this. Per the CDC, “Adults with a family income less than 100% of the federal poverty level (2.0%) were more likely to have ME/CFS, followed by those at 100–199% (1.7%), and those at or above 200% (1.1%)…The percentage of adults who had ME/CFS increased with increasing rurality of their place of residence.”
What’s in a name
A lot of ME/CFS activists (rightfully) despise the term “chronic fatigue syndrome.”
Other names have been proposed by patients and researchers (including but not limited to Acquired Mitochondrial Myopathy (AMM), Systemic Exertion Intolerance Disorder (SEID), Multisystem Neuroimmune Disease (MSND), Post-Exertional Neuroimmune Disease (PEND), Neuro-Inflammatory Disease (NID), Neuroimmune Dysfunction Disease (NIDD)). So far, nothing else has stuck, and so we’re left with the terrible, misleading name.
It’s also interesting to note how the naming of an illness can actually impact the care you receive and how healthcare providers perceive an illness. In my experience - and that of many others with ME/CFS (especially those who have been dealing with it for years - long before Covid) - the name does nothing to help our cause or our suffering, because doctors simply don’t think it’s real, they don’t think we’re telling the truth, they think it’s somatic, they don’t think it’s severe enough to warrant attention, or they don’t even know it exists.
Funding
For context, ME/CFS has no cure (as I mentioned earlier) and no one understands why or how it happens. How fun. The NIH refuses to dedicate more funding to it (and with the new administration, this is certainly not going to change for the better). The NIH has historically provided relatively low funding for ME/CFS research, with annual allocations around $14 million (out of NIH’s $48 billion total budget), which seems disproportionate given the large and growing number of affected individuals.
For comparison, Multiple Sclerosis (MS), which affects about 1 million people in the U.S., receives a much larger share of NIH funding ($110 million in 2024). This massive discrepancy raises concerns about whether current funding levels are adequate to address the needs of those suffering from ME/CFS and Long Covid (surprise - they are absolutely not).
Last year, I wrote to Dr. Monica Bertagnolli (the previous NIH director), Neil Shapiro (NIH Associate Director for Budget), and Walter J. Koroshetz (Director, National Institute of Neurological Disorders and Stroke) to ask about this incredible discrepancy - especially given how the number of Americans with Long Covid (and therefore ME/CFS) is continually rising. Their response was disappointing and dispiriting. (As an aside, I highly recommend reading The World of Osler's Web for more history ME/CFS and the nation’s public health bodies’ ignoring of the ME/CFS crisis.)
In 2020, Representative Jamie Raskin (MD-08) introduced legislation (H.R.7057) to address the “hidden crisis” of ME/CFS, which would “allow the NIH to support research and data collection on diseases like ME/CFS in order to understand how best to diagnose and treat those who are infected, as well as to assess possible risk factors. It would additionally provide for public awareness and education campaigns to increase our understanding of the disease, with an emphasis on early diagnosis.” Despite having 51 co-sponsors, it never made it past being introduced in the House. There is no genuine interest on the part of the government in finding solutions for this disease.
ME/CFS and Long Covid
As it would turn out, a January 2025 paper analyzing the results from a NIH RECOVER study found that 4.5% of SARS-CoV-2 infected study participants met Institute of Medicine (IOM) ME/CFS clinical diagnostic criteria - a figure which was nearly eight times higher than control participants. Moreover, almost 90% of the post-Covid 19 ME/CFS study participants were also found to be the most symptomatic Long Covid (LC) patients.
I find it actually hard to believe that such a relatively small percentage of longhaulers have ME/CFS. My very unscientific theory here is that most people don’t know what ME/CFS is themselves and most healthcare providers also don’t know what it is, so there ends up being a serious undercount/general problem of under-reporting.
The Journal of Infection says that actually “51% of Long COVID-19 patients have myalgic encephalomyelitis/chronic fatigue syndrome,” which anecdotally (from being in dozens of Reddit communities and Facebook groups for LC) I find far more believable.
Regardless, 4.5% is still significant, and I can only imagine that the number will continue to rise in the coming years.
Anecdotally, across the various communities on Reddit, there has been a massive amount of posts asking about persistent fatigue over the past years (not necessarily using the term ME/CFS, but describing it pretty closely). It’s clear that many people are suffering from something (likely triggered by a Covid infection) they just don’t know the name of.
Outlook
Unfortunately, given that policymakers seem to already care very little about solving ME/CFS, and perhaps even less about Long Covid (given the politicization of the virus that causes it), it’s hard to imagine a world when both have been properly researched and explored through extensive clinical trials. Now, with the active decimation of the United States’ public health system, I think we are farther than ever from finding a cure for either disease. I don’t want to end this piece on a pessimistic note and I will continue to speak up and out about both, but as many ME/CFS activists and patients can tell you, they’ve been trying to call attention to ME/CFS for years, and so few listen. Maybe when a critical mass of Americans are disabled my Long Covid and/or ME/CFS and the economy crashes because of the effects on the workforce, policymakers will actually care, but by then, it will be far too late. The damage will have been done.
ME/CFS resources:
ME/CFS is sadly here with us to stay (for now), so if you are suffering from ME/CFS (especially if you’re a longhauler like me who’s new to this world), here’s a few resources that may be helpful:
Solve ME (non-profit organization dedicated to diagnostics, treatments, and cures for ME/CFS, LC, and other infection-associated chronic conditions and illnesses (IACCIs)) - they have tons of excellent resources and webinars
ME Action (patient-led advocacy network and coalition)
Unrest (incredible documentary free on YouTube about ME/CFS)
Amazing ME/CFS wiki (including basics, education, tips, etc.)
ME/CFS voices/advocates/activists/allies/publications (in no particular order and absolutely not exhaustive whatsoever):
, , , , , , , , , , , , , , , , , , , , , , , (please post any others I might have missed in the comments!)
Note: Most of what I write is stream of consciousness, mostly because I’m too tired and brainfogged with my LC and ME/CFS, but also because it’s a nice experiment to be (mostly) unfiltered. Thanks in advance for excusing any typos, spelling mistakes, etc.
Great post - I will link to it. And thanks for including me. I totally agree with you that the 4.5% number seems highly suspect. The 51% number, just from what we’ve seen anecdotally on all the socials, seems much more accurate. I do have a very close long hauler friend whose manifestation is almost entirely dysautonomia (and I suspect MCAS), but oddly, no fatigue. They are able to hold down a f/t job with some difficulty due to the frequent syncope/dizziness/POTS stuff but they work fully remotely and can manage. But I don’t think this is the more common manifestation.
Great article, I've had M.E. since way back in the 1980s when it was laughingly called "Yuppie Flu". I was certainly no Yuppie, having just left college with my whole life planned out and it wasn't like any flu I'd ever had or have had since.
I felt like I'd done ten rounds with Mike Tyson, my whole body felt battered and bruised, I was running a fever for months on end and all the 19 year-old energy I had previously just disappeared faster than Samantha from Bewitched could twitch her nose. I felt like I was dying on a daily basis as parts of my body stopped functioning properly.
I tried so hard to carry on life as normal, working and partying hard but I got sicker and sicker as the months rolled by. After about two years of feeling like one of the undead I went to see the doctor. He did all sorts of tests which mostly came back as "normal". Then he diagnosed me with "that Yuppie Flu that's in all the papers".
Fast forward 4years and here we are, no closer to understanding M.E. than we were in 1985. Research over the last twenty years has mostly been repeats of research done in the 80s and 90s and coming to the same conclusion as they did back then.
We've had to contend with Simon Wesley and his group telling the medical establishment that we're all crazy hypochondriacs and the disease is all in our heads and doctors being the giant egos that they are have swallowed the lies hook, line and sinker and haven't bothered to investigate for themselves or, God forbid, ask the people who've been suffering for decades. They won't listen to us as we're all batshit crazy and don't know anything about our own bodies according to the crap the BPS mob have fed them for so long.
Attitudes are changing very, very slowly but it takes a sufferers death to highlight the neglect and medical gaslighting we've endured for decades for the medical professionals and the media to sit up and take notice. Then they forget us again until the next harrowing story of abuse and starvation by a hospital comes to light.
Personally, i'm really hoping the new healthcare framework for M.E. and L.C. that's due to be introduced in July this year will benefit us all and lead to decent, sensible care for us instead of the abuse and apathy we're used to receiving. Just to be believed will be a medical miracle in my eyes and a giant leap forward.
With much love to everyone who suffers daily,
Elaine