Earlier Alice penned a thought-provoking blog “No, long COVID is not helping ME/CFS”. Now she and Dr. Naomi Harvey propose that a shift in the language we use to describe both long COVID and ME/CFS would benefit both.
Without the ME/CFS cohort of long COVID being clearly distinguished, how will we ever make sense of long COVID?
ME (Myalgic Encephalomyelitis) is a severe, immune-mediated illness often triggered by viral infection. Until the emergence of SARS-CoV-2, causing COVID-19, anyone who fit the diagnostic criteria for ME/CFS (often referred to as chronic fatigue syndrome, CFS) would be diagnosed with ME/CFS no matter whether their illness was triggered by viral or bacterial infections, physical or emotional trauma, surgery, childbirth, or allergic reaction.
All of these cases fall together under the umbrella of ME/CFS since they all result in common symptoms including exhaustion, brain fog, PEM/PESE, orthostatic intolerance, and unrefreshing sleep. Common comorbidities include fibromyalgia, irritable bowel syndrome, MCAS, POTS, autoimmune problems, and Ehlers-Danlos Syndrome.
However, the medical community has taken a different approach when ME/CFS is caused by COVID-19. It has been shown on multiple occasions that approximately half of those with the long-term sequelae of SARS-CoV-2, known collectively as long COVID, have ME/CFS. Yet there is a reluctance to categorize these COVID-19-induced ME/CFS sufferers as having ME/CFS.
There are some doctors and patients who believe that long COVID should stand alone. That we shouldn’t consider those with long COVID who fit the diagnostic criteria for ME/CFS as having ME/CFS until it has been unequivocally proven that their disease is the same as those with non-COVID ME/CFS. They think it’s dangerous to conflate the two, and argue that we don’t have enough proof yet that they are the same.
Such arguments may stem from a place of hope and fear. No one wants ME/CFS, as ME/CFS is most often for life, even if the severity varies over time. People want to believe their long COVID is curable, but the commonalities between ME/CFS and long COVID go far beyond a shared symptomatology.
We argue here that the scientific and medical communities should adhere to the precautionary principle. Given the significant overlap in symptoms, viral onset, and a number of biomedical findings, we should accept those with long COVID who meet the ME/CFS criteria as having ME/CFS until proven otherwise.
There are a multitude of reasons why including COVID-19 as a cause of ME/CFS would be beneficial to both communities and reasons why keeping them separate will do harm to both communities. We also do not know enough (or anything) about the risks of progressing to ME/CFS from non-ME post-viral states. Those with long COVID who don’t fit the ME/CFS criteria yet may be at high risk of developing into ME/CFS later, and the precautionary principle means we should at least consider this.
What Does the Science Say?
Virtually every study has found the same pathologies in ME/CFS and long COVID.
To our knowledge, every published study on long COVID, bar one, has found the same pathologies that are found in ME/CFS studies. Overwhelmingly, biomedical study results show the same findings between long COVID and ME/CFS. These include but are not limited to: evidence of neuroinflammation; loss of gray matter; cerebral hypoperfusion; dysautonomia; mast cell activation; endothelial dysfunction; the presence of microclots; cardio-pulmonary abnormalities; pro-inflammatory cytokines; impaired TRPM3 ion channel function in NK cells; T cell exhaustion; increased reactive oxygen species; microglial activation; altered fatty acid metabolism and dysfunctional mitochondrial lipid metabolism; lowered cortisol; impaired tryptophan-kynurenine metabolism; impaired glucose metabolism; CPET-evidenced exercise intolerance; small fiber neuropathy; reactivation of EBV and other herpes viruses.
There are a few studies that show quantitative differences in specific abnormal findings between those with long COVID and those with ME. For example, whilst hyperactivated platelets and fibrinaloid microclots are found both in long COVID and ME/CFS, the microclot load was reduced in ME/CFS patients compared to those with long COVID. There have also been suggestions from physicians that the degree of endothelial and cardiovascular damage seen in long COVID outstrips the endothelial damage seen in ME/CFS.
Duration May Make a Difference
Some small differences may simply be due to the longer duration of the illness in ME/CFS.
These are valid points, and it’s possible that these are differences seen with ME/CFS when induced by SARS-CoV-2, as we would expect to see some minor differences according to the initial trigger. But it’s important to remember when interpreting these differences, that all existing research on long COVID has been done on people in the early stages of the disease.
In contrast, very little research on ME/CFS has ever been done on people in the early years of the disease. In fact, we could only find two studies on people with ME/CFS who were less than 3 years from disease onset, which produced three papers.
So far as we are aware, there is a single study showing a distinct difference between ME/CFS & long COVID, this one. The authors state, “Long-COVID is biochemically distinct from ME/CFS as all 14 vascular transformation biomarkers increased significantly in plasma from Long-COVID patients when compared to healthy control subjects. In contrast, plasma levels of P-SEL, MMP-1, ICAM-1, VEGF-A, and VEGF-D either do not change with ME/CFS or are depressed”. However, as these authors are not ME/CFS specialists, they do not seem to be aware of a very important caveat: ME/CFS pathology changes with time.
ME (Myalgic Encephalomyelitis) is a severe, immune-mediated illness often triggered by viral infection. Until the emergence of SARS-CoV-2 causing COVID-19, anyone who fit the diagnostic criteria for ME/CFS (often referred to as Chronic Fatigue Syndrome, CFS) would be diagnosed with ME/CFS no matter whether their illness was triggered by viral or bacterial infections, physical or emotional trauma, surgery, childbirth, or allergic reaction.
From what little research there is, we know that abnormalities in ME/CFS can and do change with time since onset. For example, people who have had ME/CFS for more than 10 years show less pronounced pulse pressure changes during a NASA Lean Test compared to people who had ME/CFS for <4 years. Additionally, a study led by Dr. Mady Hornig showed that the biochemistry and cytokine signature in ME/CFS changes with illness duration. Dr. Hornig’s team found that those with ME/CFS for <3 years had a distinct immune signature of “activation of both pro- and anti-inflammatory cytokines as well as dissociation of intercytokine regulatory networks”. This research clearly demonstrates that the immunopathology of ME/CFS is dynamic and not fixed.
It’s therefore likely that the few differences that have been found between ME/CFS and long COVID are an artifact of time since illness onset. Additionally, we would expect to see subtle differences in people with ME/CFS depending on the triggering event or virus. As an anecdotal observational example, those whose ME/CFS appeared to be triggered by EBV seem more often to report flares in symptoms such as sore throat and swollen lymph nodes more often than those whose ME/CFS was not EBV-triggered. Such differences do not justify saying EBV-induced ME/CFS is a new disease. Why should COVID-induced ME/CFS be different?
For those of us who know the ME/CFS literature intimately, it is shocking how anyone can argue that long COVID is distinct from ME/CFS. What we are likely seeing in long-COVID research is a terrific insight into the early stages of ME/CFS. And vice versa, we can study ME/CFS veterans and apply existing knowledge in order to better understand the disease course & anticipate problems in those with COVID-induced ME/CFS before they happen.
It is also possible that those with long COVID who do not currently fit the criteria for ME/CFS are at high risk of developing ME/CFS with additional immune challenges such as repeat infections or vaccinations. There has only ever been one prospective study of ME/CFS from before its onset and we know next to nothing about whether people with non-ME post-viral illness or POTS, MCAS, EDS etc. may go on to develop ME/CFS further down the line.
By separating ME/CFS from long COVID now, we are missing a unique opportunity to study a cohort of people with post-viral illness long term to see what their risk of ME/CFS is and what biochemical and immune changes mediate this.
The Risks of Treating Long COVID as Distinct to ME/CFS
How Problematic Language Surrounding Long COVID Harms Those with ME
Consider the term “long COVID”, which encompasses several health conditions rolled into one. Definitions of long COVID vary and often include any new symptoms or conditions lasting sufficiently long following a Covid-19 infection.
Some conditions counted as long COVID are conventional non-syndromic issues that can be tested for and have existing guidelines, such as kidney injury pulmonary fibrosis, or cardiac pathologies. However, long COVID also includes those with syndromes like ME/CFS, dysautonomia, and chronic autoimmune conditions, as well as people with pre-existing complex chronic illness that are worsened by SARS-CoV-2 infection.
Some of these long-COVID conditions include ME/CFS, Post-ICU syndrome, lingering COVID symptoms (such as cough, loss of smell, and taste), organ damage, neurological symptoms, and arthritis. Often, the increased risk for things like heart attack, stroke, and diabetes following a COVID-19 infection is also considered to be part of long COVID.
The use of the term long COVID enables all the effects of SARS-CoV-2 to be discussed and quantified as a whole, and it has allowed the patient community to come together as one. There are many reasons why this term has been effective and needs to be kept at least as an overall umbrella term.
Not clearly distinguishing the master subset – ME/CFS – can diminish ME/CFS, leading people to think it’s just fatigue.
The fact that long COVID encompasses so many conditions makes it harder to talk about the different needs of those with different subtypes, as well as to talk about the long-COVID ME/CFS subgroup. We cannot say that long COVID and ME/CFS are the same because long COVID includes too many other issues, yet they are more than just “similar” or “linked”.
Unfortunately, many people new to the world of chronic illness and ME/CFS seem to be under the illusion that ME/CFS is “just fatigue” and that the problems that come with it including hypercoagulable blood, vascular and orthostatic dysfunction, dysautonomia, immune dysregulation including mast cell activation syndrome, are separate comorbidities seen only in long COVID.
This is what we call the “comorbidity problem” – where people fail to understand that ME/CFS is far more than “just fatigue”. Essentially, people end up conflating a number of different conditions together all under the umbrella of long COVID to make it look like long COVID = ME/CFS + POTS + autoimmune problems + MCAS + Post ICU Syndrome + Loss of Smell + etc. This, in turn, makes it easier for people to consider ME/CFS as “just fatigue” & makes it seem like those with “Long COVID” have much more numerous & severe health problems than those with non-COVID ME/CFS, which is simply not true.
Once ME/CFS is viewed as “just fatigue”, it becomes much harder for it to be taken seriously, and the reluctance to group COVID-induced ME/CFS with other ME/CFS begins to make sense.
Those with long COVID know their problems go far beyond “just fatigue”. They see the gaslighting & dismissal people with ME/CFS have faced for decades & understandably do not want to have to face the same thing, so many further encourage the division between long COVID & ME/CFS.
Unfortunately, this does not protect them from such a fate, as the proponents of the psychosocial model of ME/CFS are already working on long COVID, trying the same things they did with ME/CFS, including recommending treatments such as the Lightning Process and Graded Exercise Therapy which will only serve to harm sufferers.
Understanding Risk
Failing to acknowledge that up to 50% of people with long COVID have ME/CFS also makes it difficult to understand the risks that long COVID poses. Estimates of the prevalence of long COVID following COVID-19 infections vary wildly across studies using varying definitions of long COVID, as well as various methods of estimating its prevalence
Without diagnoses that allow us to appropriately stratify the long-COVID branch of diseases, we cannot estimate the true risks and consequences of having long COVID; i.e. what percentage of those with “long COVID” have something relatively minor, such as a lingering cough, or fatigue that will disappear over time, vs something more severe like an ME/CFS case, which can leave one functionally disabled for life. That vagueness has allowed the public to minimize the severity of long COVID. (Checking out the comments on any long-COVID media piece will make that clear.)
Not clearly distinguishing ME/CFS could allow the seriousness of the condition to be lost.
For people to better understand the risk long COVID poses, we need to break “long COVID” down into distinct conditions, each of which will have different impacts, risk levels, and prognoses.
Additionally, it’s clear that some people who see reports claiming a high risk of long COVID following COVID-19 infection exists, combine that with a personal experience of knowing few or zero people who (publicly) report being severely affected by long COVID, and then conclude that the high risk of long COVID is made up.
Indeed, it’s possible that most people initially labeled with “long COVID” will either have relatively minor symptoms that simply take some time to disappear. People whose functionality is more impaired (the ME/CFS-like long-COVID group) are likely fewer in numbers, may either not wish to be public about their condition, or may lack the energy to do so – leaving them largely invisible.
Splitting up long-COVID risk by condition, (e.g. – the risk of developing ME/CFS following COVID risk of developing loss of smell following COVID, etc.), would reduce the gaslighting the ME/CFS-like long-COVID cohort faces, educate the public about the seriousness of the disorder, and make it harder to dismiss or minimize.
Talking about COVID-induced ME/CFS will also benefit those with ME/CFS by helping to undo the decades of gaslighting and stigmatism they’ve endured while making it clear, once again, that “chronic fatigue syndrome” or ME/CFS is not “just fatigue”.
The Wider Dangers of Separating COVID ME/CFS from Others with ME
By pretending that COVID-19-induced ME/CFS is a new condition, and by failing to make clear that long COVID is just the latest iteration of post-infectious ME/CFS-like illness states, we allow governments and research funders to continue dragging their feet on ME/CFS research, leaving ME/CFS one of the most underfunded diseases in the NIH.
We saw this recently at the National Institutes of Health (NIH) when support for ME/CFS actually dropped at a time when the NIH was engaged in spending over a billion congressionally mandated dollars on long-COVID research.
This allows the media the state things like treatments for brain fog are lacking because brain fog is a “still relatively new” phenomenon, when brain fog has been a significant problem in ME/CFS, POTS, fibromyalgia, and cancer fatigue, for decades.
Keeping Long COVID Distinct from ME/CFS Will Further Hinder Research on Both Diseases
Whilst the term long COVID was created by patients themselves and is the preferred colloquial name, failing to appropriately screen and categorize the sub-types of Long COVID in research studies will also introduce methodological errors and weaken the research.
Treating long COVID as a uniform condition in research studies means that important differences will be missed, at best lending to confusion as to what long COVID is, perpetuating ideas that long COVID is ‘mysterious’, at best, and invalidating research findings and delaying treatment progress, at worst. This, however, is currently the norm as very few long-COVID studies to date have differentiated out their ME/CFS-like or other subsets.
The reason so many long-COVID studies produce the same abnormal findings as ME studies may be because at least 50% of their participants have undiagnosed ME/CFS. That, of course, would hamper our understanding of those whose long COVID does not fit the ME/CFS criteria.
Failure to account for subtypes and differential diagnoses means not only failing to appropriately stratify for disease subtypes but leads to failures to link up with the existing literature on those conditions, leaving researchers to keep “rediscovering” findings that previously showed up in ME/CFS and other conditions. While some studies cite ME/CFS findings, others – even in cases where ME/CFS citation would help to validate a finding or hypothesis – do not.
The search for effective treatments will surely be hampered, as well, by having a mishmash of patients in clinical trials. A treatment that works for one particular subset of long COVID may not work for the rest – resulting in false negatives and treatments wrongly being discarded as ineffective.
Consider PEM (Post Exertional Malaise), the cardinal symptom of ME. Patients with PEM exhibit exercise intolerance and can be harmed by exercise but long-COVID patients without PEM may actually benefit from exercise. There are ample cases within the long-COVID community of this harm happening already. The authors personally know people who suffered severe worsening after exercise, who were seeing a doctor who did not diagnose them with COVID-19-induced ME/CFS, and failed to treat them properly.
THE GIST
- Alice Kennedy’s first blog on Health Rising, “No, Long Covid is Not Helping People with ME…” triggered a lot of discussion. Now she’s back, teamed up with Dr. Naomi Harvey with another thought-provoking blog.
- The authors noted that prior to long COVID, the term ME/CFS included many different types of ME/CFS – post-infectious (viral/bacteria) ME/CFS, emotional/stress-induced ME/CFS, post-surgical ME/CFS, no known trigger ME/CFS. That changed with long COVID: instead of long COVID being a part of ME/CFS, there was long COVID – and ME/CFS.
- While the term long COVID has been helpful in bringing attention and resources to the illness, Alice and Naomi believe it’s imperative that the ME/CFS cohort be singled out and grouped under the term ME/CFS.
- Many studies now suggest that the pathophysiology of the two diseases is nearly identical. (See list at the bottom of the blog.) Alice and Naomi argue that the small differences found thus far could be due to the longer duration of illness seen in ME/CFS.
- Because long COVID contains so many subsets – from the large ME/CFS-like cohort to the people with lung or heart or kidney damage – the fact that the term long COVID suggests it’s one thing is misleading…
- It includes, for instance, people with one or two symptoms that either resolve themselves over time or aren’t particularly significant. Including people with significant functional problems such as the ME/CFS-like cohort in the same group causes confusion – and can cause some to minimize the severity of their illness.
- When ME/CFS gets grouped in the long-COVID basket with diseases like POTS, MCAS, lung, heart or kidney problems, etc., it tends to get viewed as “just fatigue” rather than the complex disease it is.
- Not filtering out the ME/CFS cohort from other long-COVID cohorts will impede efforts to understand and find treatments for all the cohorts.
- Not doing so leaves some researchers oblivious to the fact that decades of research on ME/CFS exist which could help inform their understanding.
- It leaves the ME/CFS group of long-COVID patients prey to potentially harmful techniques like graded exercise therapy.
- The authors suggest we find new ways of referring to the different types of long COVID such as COVID-induced ME/CFS”, “COVID-induced autoimmunity”, “lingering COVID symptoms”, “COVID-induced asthma”, etc.
In short, keeping ME/CFS and long COVID separate will hinder progress in research on both diseases.
Conclusion
Using the term “long COVID” whilst failing to identify subdiagnoses and specifying which groups are being discussed, is confusing & actively harmful both in scientific research and in a wider context. Failure to appropriately diagnose ME/CFS amongst those with long COVID is detrimental to those suffering from it, as well as those with non-COVID ME/CFS and the general public.
Failing to correctly diagnose ME/CFS in those with long COVID is actively harmful to individual patients, as it leaves them exposed to false ‘treatments’ such as graded exercise therapy, which have been widely discredited and found to be harmful to people with ME/CFS. One of the benefits of receiving an appropriate ME/CFS diagnosis is the limited protection such a diagnosis gives through guidelines such as the NICE guidelines on diagnosis and management of ME/CFS in the UK, which prohibit graded exercise therapy or cognitive behavioral therapy from being offered to ME/CFS patients as a treatment.
The SARS-CoV-2 virus appears to be acting as a ‘super-trigger’ that can produce all sorts of serious and severe diseases – including ME/CFS. The reality is that we are in the midst of the largest outbreak of ME/CFS ever recorded. Failure to acknowledge this, alongside all of the other long-term consequences of COVID, is a failure of public health.
The medical community’s neglect of conditions like ME/CFS and POTS has left our medical systems ill prepared to handle the massive wave of coronavirus-triggered ME/CFS-like other sequelae. Specialty departments in post-infectious illness or dysautonomia are largely lacking and few physicians are even marginally fluent in these conditions. Likewise, few clinics can offer thorough testing and diagnostics, and there are no licensed treatments for ME/CFS. None of this will change until there is widespread recognition that ME/CFS is part and parcel of long COVID.
I hope we can start a discussion around the use of the term “long COVID” and begin using more specific language to describe the conditions it comprises. Doing this will speed up research, and improve understanding of long COVID and associated conditions. A good starting point, for people with long COVID, is to start with yourself. Instead of describing yourself as having “long COVID”, you might describe yourself as having “COVID-induced ME/CFS”, “COVID-induced autoimmunity”, “lingering COVID symptoms”, etc. If enough people adopt this, it will go a long way toward solving these problems.
Table 1. A non-exhaustive selection of findings that have been replicated between ME/CFS and long COVID (one example of each type of pathology has been shown for brevity).
| Pathology | ME/CFS | Long COVID |
| Neurological | ||
| Neuroinflammation
Reduced gray matter Cerebral hypoperfusion Brainstem hypometabolism Brainstem volume changes Microglial activation Dysautonomia Postural orthostatic tachycardia Small fiber neuropathy |
Nakatomi et al. 2014 | Kavanagh 2022 |
| Immune/Endocrine | ||
|
Lowered cortisol Pro-inflammatory cytokines T cell exhaustion Mast cell activation Dysfunctional autoantibodies Autoimmune disease Impaired TRPM3 ion channel function in NK cells Cardio-pulmonary abnormalities |
Nijhof et al. 2014 | Klein et al .2022 |
| Preload failure
Reduced cardiac output Chest pain & dyspnea |
Miwa 2016 | Brown et al. 2022 |
| Vascular | ||
| Endothelial dysfunction
Microclotting Hypercoagulability |
Sandvik et al. 2023 | Charfeddine et al. 2021 |
| Latent viral reactivation (EBV, HHV6 etc) | Schikova et al. 2020 | Rohrhofer et al. 2022 |
| Exertion intolerance | Moore et al. 2023 | Joseph et al. 2023 |
| Metabolic | ||
| Impaired glucose metabolism
Altered fatty acid metabolism Mitochondrial dysfunction Impaired tryptophan-kyneurenine metabolism |
Brown et al. 2018 | Montefusco et al. 2021 |
Cort, excellent reporting, as usual.
I can add nothing except that I’ve long stopped being surprised or disappointed by the lack of interest, concern, compassion or belief in the research that has uncovered the real problems that CFS sufferers endure.
Still crazy how ignored and held in distain we are after all these decades and all the hard evidence that is available to the darn so-called experts.
I admire you so much , Cort, for the continued effort it takes to hang in there. When is the derision for the CFS
community ever going to end?!
My guess is that it is receding and that it’s receded much more over the past 2 years than in the past 10. We clearly have much more work to do, though, – particularly with regard to the bureaucracy in places like the NIH and the CDC where we are still at – least with funding – stuck in the same old pattern. I cannot imagine, though, that is not going to change. I think the arc is upwards….
I will accept your thanks for publishing the blog. Your main thanks, though go to Alice and Naomi Harvey! They wrote the blog 🙂
Thank you to both ladies!
And to you, Cort, for your optimism.
Great post!
I fully agree, except for one point:
Having Long Covid (or other Long X illnesses) with ME/CFS does not mean that the severity is higher than without ME/CFS.
There are many other syndromes apart from PEM (NDPH, Fibro, SFN,…) which can be severe and make people bed- or housebound without ever having PEM.
This statement also kind of contradicts the intent of the article.
So I would urge to be careful with such claims because it marginalizes people.
in the gist stands: “She noted that prior to long COVID, the term ME/CFS included many different types of ME/CFS – post-infectious (viral/bacteria) ME/CFS, emotional/stress-induced ME/CFS, post-surgical ME/CFS, no known trigger ME/CFS. That changed with long COVID: instead of long COVID being a part of ME/CFS, there was long COVID – and ME/CFS.”
I have gotten the feeling that sice COVID came, there is only intrest in Infectious onset ME/cfs. I declined with so many reasons…from infectious to a to hot summer, to stress (someone died), excertion, to you name it…even a fall on the floor… And i keep declining… sometimes i even do not know why… So remitting and relapsing is not for me… there are many folks with ME 100% bedbound…
“Today we are announcing that the government will end vaccine requirements for federal employees, federal contractors and international air travelers by the end of the day on May 11, the same day the Covid-19 public health emergency ends,” it says. White House in a statement.
The administration of US President Joe Biden announced in January that the emergency, which was declared in March 2020 by then-President Donald Trump, will end on May 11.
https://www.ad.nl/buitenland/vs-beeindigen-op-11-mei-covid-vaccinatieplicht-voor-internationale-reizigers~a70a5317/
Let end the covid hysterie now in the VS, Cort you don’t need to wear your mask anymore! Isn’t that be great news:-)
:)…I think I will continue for a while. I’ll clearly be one of the last ones! Here’s to being different! I told myself that when daily COVID-19 deaths fell below 100 in the US I would stop. Right now they’re at 1200 a day. I don’t know if they will ever get to the 100/day figure. I may have to readjust…
I will keep wearing a mask for a long time to come because I don’t want to take the risk of increasing my functional impairments from my fibromyalgia by compounding it with potential long COVID, thanks. Minor inconvenience to wear a mask if that is the risk avoided.
As a long COVID patient who also received the ME/CFS diagnosis after six months of symptoms that included fatigue, I appreciate the opportunity that Alice presents for us to think critically about nomenclature – it definitely matters. After I got the ME diagnosis, I dove into the research about ME and resources for patients, and was simultaneously saddened that so many millions have had to live with a largely unrecognized illness for decades in many cases and grateful that the proverbial trail had been blazed to some extent by those with ME and the handful of researchers studying it.
Here’s my “however,” and I admit that it’s unfortunate: I think several trains have left the station here already. For one, ME/CFS all on its own suffers from a nomenclature problem. When I try to tell anyone from a lay person to a doctor that I have myalgic encephalomyelitis, I get bewildered looks followed by “what’s that?” As soon as I say “what is often known as chronic fatigue syndrome,” I get instantaneous recognition from folks. It’ll be hard to get the wider society, or even just the medical community, to think of ME as a much broader, serious disease that goes well beyond fatigue if we can’t get past the point of “fatigue” being the primary way it’s recognized at all.
The other train that’s left the station, in my experiences seeing dozens of medical professionals and applying for both employer-based and government-based disability (in the U.S.) is that I’d say within the past year plus, I no longer have to wade through confusing/disbelieving/dismissive looks or comments from anyone in the medical or disabilities fields when I mention that I have long COVID. The disease (or range of diseases, as per Alice – and I agree with that) is now widely accepted to exist among these folks, even if the media and the public at-large still don’t know enough about it. And while I can say to new medical providers phrases such as “I have COVID-induced POTS,” for example, it is also much easier to start with “I have long COVID and ME/CFS” before I launch into the alphabet soup of everything I now have that falls under that umbrella, including new problems that seem to develop every month.
I don’t know where this leaves us as a community that should for many reasons band together. On an individual level, I know I have to keep using the most efficient language possible to get my issues across in the 15 minutes or less I have with any given provider. That’s just a matter of survival strategy, at this point, as much as I’d love to be the staunchest of advocates on behalf of ME/CFS patients everywhere.
Completely agree Amy. I feel like many medical professionals want to roll their eyes when I mention MECFS. I can see them glaze over. Part of the issue here is everyone is time poor including primary care physicians.
We are well read and stay abreast of latest research, because we’re obviously so vested in our recovery.
We need to have more prmiary care doctors receiving Cort’s blog as he does such a good job in the Gist of summarizing the essence of any article, into sound bites of key info.
Long covid has got traction because it has received worldwide press. I’m sure the majority of us are simply viewed as malingerers, particularly if our severity means we shift from flares to relatively “well”. Sadly what will get the world’s attention is for someone of celebrity, royalty, or political status who was strong and infallible to get this thing and then to tell their story. And yet we as a group wouldn’t wish it on our worst enemy.
I’m not sure a celebrity getting ME/CFS will have the impact you hope for.
As a former hockey player sidelined by ME/CFS, I have been watching closely the case of the Chicago Blackhawks’ captain and future hall-of-famer, Jonathan Toews. He had to step away from hockey for health reasons (a diagnosis of CIRS). It seems like everyone in his case has gone to great lengths to say that what he has is NOT “chronic fatigue syndrome.”
It’s kind of bizarre.
As one example, here is a link to the article (with an embedded video of Toews speaking about his time off the ice).
https://wgntv.com/news/medical-watch/what-is-cirs-a-closer-look-at-the-immune-syndrome-that-sidelined-jonathan-toews/
QUOTES FROM THE ARTICLE:
“If left unchecked, the disorder can be debilitating. People experience fatigue, executive function loss as well as memory problems and mood disorders. Because it involves many body systems with varying symptoms it is often misdiagnosed as Parkinson’s Disease, Chronic Fatigue Syndrome, fibromyalgia and even Alzheimer’s disease.”
“If left unchecked, the disorder can be debilitating. People experience fatigue, executive function loss as well as memory problems and mood disorders. Because it involves many body systems with varying symptoms it is often misdiagnosed as Parkinson’s Disease, Chronic Fatigue Syndrome, fibromyalgia and even Alzheimer’s disease.”
“CIRS is usually from an infection, bacterial viral fungal, like Covid, where you overreact,” Sharon said. “So that is a form of Chronic Inflammatory Response because about a third of people have chronic symptoms after Covid. So they have had the disease but it has triggered the immune response.”
Thank you for the link, Brian. It was rather humorous to see an elite level hockey player blaming things from mold to COVID (that he didn’t have) to concussion when he probably over-stressed himself into a very mild case of MECFS. I hope it was a short-lived overtraining syndrome and he has recovered. If not, he’ll need to get rid of the quack that speaks for him before he can make a progress. I’m afraid it’ll only get worse for him otherwise.
Very interesting. It’s like if they talk to the inflammatory response it sounds more ‘newsworthy’ ‘important’or ‘credible’. The word fatigue does seem to be a trigger for many to dismiss us.
This just hit different! My swimming career at USNA was cut short after making All-American 1988-91, and the primary diagnoses of autoimmune disease led the show until May 23, 2023 (ME/CFS diagnosis).
Any high caliber athlete that has put in the work, and is sidelined for ANY reason, gets it on a whole other level. I went from a BOSS, freak of nature, physically blessed, strong women, to a home-bound chronically ill person desperate for answers! There was simply a loss of words to explain the horrific transformation, along with my mind being at odds with my body! ME/CFS diagnosis, sure, the validation is a relief like no other. However, the overwhelming adjustment to the physical damage to my body, and unacceptable prognosis, is a hard pill to swallow. This is where I am swirling, as this diagnosis will be forever worst than any prior.
I will never stop fighting for the “root cause”, biomarkers, exact science to explain my specific case and hopefully put my mind at ease. The wind beneath my wings is my 2 son’s, who deserve a Mom who can be more present again, live their life without the trauma of misdiagnoses and redefined dreams. Armed with the genetic defects, it is my sincere hope that the future generations of our family will gain early diagnosis and suffer less.
YES to the celebrity public spotlight! I will also follow the Chicago Blackhawks’ captain and future hall-of-famer, Jonathan Toews! Thanks so much for sharing this article! Hang in there! Robbi
It seems that there are so many high-level athletes who are on these message boards. I wonder why that may be.
The pain of losing your athleticism comes through loud and clear in your post. I am sorry you have to go through that. Doubly sorry because of the loss of an element of your life (water). Swimming is so unique for that reason, the loss of it is enormous. I hope you find joy and meaning through the physical trial that comes with ME/CFS–endurance.
Congratulations on all the amazing accomplishments you had in the pool.
People with long Covid that can no longer work are facing the same difficulties that those with CFS/Me or FM face. Without a discrete biomarker to identify the condition, they are getting rejected for disability claims.
I was able to win my STD appeal as a long COVID patient, and now receive LTD, after undergoing the two-day CPET. I know there are no biomarkers per se, but I also have a mountain of test findings that point to immune dysfunction; when viewed together, they make a compelling data set that is largely supported by what researchers are finding. I realize I may be in the minority as far as long haulers go in terms of actually getting awarded disability. AND, the LTD carrier is making me apply for SSDI, which is underway. I also have to scramble to KEEP my disability benefits – constant doctor’s visits and having to send the carrier proof that I am still disabled. It’s exhausting, the stress and effort not aiding in my recovery whatsoever, and yet I still realize I’m one of the lucky ones. Here’s the blog with my story if you want to read more: https://www.healthrising.org/blog/2023/03/02/my-long-covid-disability-journey/
Some positive anecdotes to share:
1) I had my SSDI medical exam last week. The doctor I got was kind and knowledgeable (and I was shocked; I had been so anxious going in). In my long list of diagnoses, I forgot to include ME/CFS (purely an accident; they don’t give you much room on those forms and my brain went to long COVID first). After a pretty full discussion, she asked me if I had been formally diagnosed with ME/CFS. I was so pleased she asked (though I am not naive; I realize she may use any of the info I share to NOT support my claim in her report back to SS). But still, that surprised me and I hope it means good things.
2) I met with a new primary care physician yesterday, and her assistant was so thorough in documenting all of my new conditions as a result of COVID. When she read me what was already in the system, I said, “oh – I’ve also been diagnosed with ME/CFS,” partly waiting to see if she’d ask “what’s that ?” BUT, she said “ahh, that’s important – let me find it in the system,” which then made me wonder if their system would have this diagnosis. Indeed it did! She just had to spell out myalgic encephalomyelitis and there it was. Very encouraging!
3) the new primary care doc then came in, and she was great. I handed her a postcard from MEAction on a free CME course for doctors, and she was genuinely interested: “oh wow…this is great! thank you” as she turned the postcard over and read both sides in front of me. I was so pleased (especially as one of the volunteers to help MEAction obtain the doctors’ addresses for this project).
Thanks for a wonderful post. I have SARS-COV2- ME/CFS and also SARS-COV2–induced POTS, and couldn’t agree more with you. The lack of clear diagnoses within the “long COVID” bucket is a real cause for concern, both at the individual level and for research. And the language is terribly confusing. On a personal level, for example, when my doctor requested my insurance company pay for a wheelchair for me, they declined on the basis that “wheelchairs are not an approved treatment for long COVID, but exercise is”. When I outlined my case re the ME/CFS diagnoses, they questioned whether my current illness is related to my earlier COVID infection. A tricky tight-rope indeed! Your suggested language of “SARS-COV2-induced X” should go a long way to help overcome such issues. And from a public health perspective, you’ve hit the nail on the head regarding mis-classification and the lack of stratification diluting outcomes and providing false negatives in long-COVID research. We should all work together to ensure the sub-groups of “SARS-COV2-induced X, Y and Z become more widely appreciated and articulated, (and soon!), so as not to waste the incredible potential for “long-COVID” funded research to develop diagnostics and treatments to help the ME, POTS, MCAS and other communities, which now include the SARS-COV2-induced newbies. If there really are people trying to avoid the label by just calling their illness “long-COVID”, they are doing themselves a disservice. That approach limits access to existing knowledge on whatever post-viral condition/s you actually developed secondary to COVID. Increasing awareness of the sub-groups and diagnosing, treating and researching long-COVID accordingly maximises the chance to provide the best outcomes to ALL members of the communities, both veterans and newbies 🙂
This is a great article with a lot of valid points. I feel this has been the case in fibromyalgia also, that there are a lot more subtypes than we understand and that it hampers conclusive clinical trials from being able to ever identify treatments that work for more than 30% of patients at best. I also wonder if this is the case with “long COVID” if there are particular fibromyalgia subtypes of patients that would benefit from being separate out from the ME/CFS subtypes? I was initially diagnosed with CFS when I began to experience extreme fatigue but then received a diagnosis of fibromyalgia as I began to have more pain and met that criteria. I think there is still a lot of overlap between those two conditions but with research there seem to be some clear distinctions now. Since it is less clear if fibromyalgia is a post-infectious illness, too, it would be interesting to also understand early pathology of “fibromyalgia-like” long COVID and how it might be distinct from ME/CFS-type long COVID.
It would be helpful to patients and medical professionals to recognize people who have had ME/CFS for many years and may have shown some improvement in symptoms over time now have a significant relapse of ME/CFS symptoms after a Covid infection. Some with long haul ME/CFS may finally find the medical community taking them seriously because they are perceived as having long Covid without recognizing their history of ME/CFS. Doctors are paying attention. Patients can help inform their medical care providers. As someone who got ill in the 80’s during the original CFS outbreak in Incline Village it is a relief to be taken seriously by medical professionals.
Thank you, ladies and Cort for this article.
Don’t take this the wrong way as I would never wish any of this illness on anyone. I admit finally feeling a large degree of hope when our world was hit with a global pandemic.
BOOM… here I am staring at thousands of posts on newly created FaceBook groups for “Long Covid” sufferers. Every single one of them desperately crying out for help, not understanding the myriad of insufferable, mysterious and debilitating symptoms. Begging for someone to understand, begging for help and support. Desperate to know if anyone has gotten relief from anything.
Families and lives ruined by THE EXACT SAME CONSTELLATION OF FIFTY SOME ODD HORRIBLE SYMPTOMS that perfectly describe the life of an ME/CFS patient.
I thought it was too good to be true. Living with ME/CFS for going on 7 years now. I thought, finally, we stand a chance at getting answers. And to think I was upset that it took an unprecedented global pandemic to finally stand a chance of getting better. Ha. Joke was on me!
Apparently no one sees what is posted all over the internet—millions of ME/CFS patients screaming for help. I feel like I’m living in the Twilight Zone watching what is so blatantly obvious move backwards year after year.
First of all: thanks to Alice & Amy for writing this thought-provoking blog.
I do have some questions abt ‘long covid’ ‘lumping’ (different kinds lumped together).
There is a difference between for example “post-covid loss of smell or taste, but otherwise fully functioning “ and the “post covid 50 shades of a ruined life” group. True.
Though the latter group resembles “ME/CFS” a lot, I understand why some are reluctant to get the ‘me/Cfs’ label or even to mention me/Cfs.
We ask to ‘split’ “long covid” for research purposes.
But at the same time we ourselves lump cfs and ME together.
Knowing there is a huge difference between ‘cfs fukuda’ and ME (CCC/ICC where PENE/PESE is mandatory).
Why do people with longcovid think “ME/CFS” is about ‘fatigue’?
While almost all the research findings in longcovid are ‘ copy/paste’ from ME research?
Because of ‘CFS’ of course.
Don’t we need to address that issue too? In the ‘ME/CFS’ community there are different groups too.
We all spend time finding “our cohort” of people we can relate to.
I for example don’t relate to ‘Cfs’.
The Dx I got (ME isn’t diagnosed over here).
My neighbour has ‘Cfs’ too.
She goes out & about regularly.
Walks her dog.
Glad for her. But that’s very far from my experience.
I never could relate to ‘Cfs’.
I NEVER said “I am fatigued”.
I said from the start “I feel very very ill. Like a bad flu x 1000”. “Run over by a truck every time I wake up.” “My head sometimes feels like it’s going to explode” “I forget everything.” “My hands and feet go numb a lot” “Can’t drive/work/socialise/… anymore”. “Can’t stand on my feet to cook” “cannot read my beloved books anymore” “can’t handle noise” …
I was & still am housebound & often bedbound.
Then I found out about “ME”.
A whole other ballgame than what I read about ‘Cfs’.
So, If I had longcovid? And knew nothing about ME like I didn’t?
I wouldn’t want to have a ‘ME/CFS’ or ‘Cfs’ Dx.
if you say “ME”, what follows is this: “what? What’s that?’
Friends, family, doctors, …
And then you need to add ‘they also call it Cfs’
‘Ah! … and you see this slight change of expression. The ‘F’ effect.
if LC patients and others, don’t know that their endless list of symptoms, the daily hell they live in now, already has a name?
Already existed looooong before sars2 came around?
We’re partly to blame for it ourselves.
‘ME, aka Cfs’ ‘cfs, aka ME’ … the things you read in our own community.
(Sigh)
if I had LC? I’ld stick to it.
Even though online many people laugh abt LC too. I know.
But for doctors & some others? It’s easier to ‘get a picture’. The culprit is known & some media have done decent reporting.
There’s one group I do blame.
LC researchers who clearly got A LOT of their knowledge/hypotheses from ME research.
Not referring to ME patients when results of a study are identical, is scientifically incomprehensible.
And yes, it would do the “severe LC” group justice if they started creating subgroups. Very true.
Excellent work here, Cort.
To support what you have said, here is a Twitter thread from the Putrino Lab about why Long Covid is NOT an FND, functional neurological disorder, and summarizes some research:
https://twitter.com/PutrinoLab/status/1653047893522100224?ref_src=twsrc%5Etfw
In this thread is the following quote:
“#LongCovid is an infection-associated complex chronic illness, (just like what members of the #MECFS, #Lyme and other complex chronic illness communities have told us from the start).”
AWESOME and thanks for sharing!
Retweeted using your quote and gave credit! Curious if better hashtag than #HealthRising?
Thank you, Alice, very much. Here is a new study:
Abstract:
“Up to half of individuals who contract SARS-CoV-2 develop symptoms of long-COVID approximately three months after initial infection. These symptoms are highly variable, and the mechanisms inducing them are yet to be understood. We compared plasma cytokine levels from individuals with long-COVID to healthy individuals and found that those with long-COVID had 100% (!!!) reductions in circulating levels of Interferon Gamma (IFNγ) and Interleukin-8 (IL-8). Additionally, we found significant reductions in levels of IL-6, IL-2, IL-17, IL-13, and IL-4 in individuals with long-COVID. We propose immune exhaustion as the driver of long-COVID, with the complete absence of IFNγ and IL-8preventing the lungs and other organs from healing after acute infection, and reducing the ability to fight off subsequent infections, both contributing to the myriad of symptoms suffered by those with long-COVID.” (exclamation points added by Ann1)
https://www.longdom.org/open-access/cytokine-deficiencies-in-patients-with-longcovid-95498.html
Autoimmune diseases of any type vary from person to person, no matter the category, be it lupus, rheumatoid arthritis, or myalgic Encephalomyelitis, as examples. We come to the diagnosis with individual genetics, environmental exposures, epigenetic triggers, nutritional states, previous infections and triggers, be they stress, chemical, bacteria or virus. So no wonder the individual may have a variation in the expression of their disease state in the early or late stages. As sad as it is for all the people suffering from Covid induced ME/CFS, I am also grateful and hopeful that it has finally shed light on the unrecognized and unfunded research needs for the umbrella conditions that fall under the ME/CFS diagnosis. Excellent paper. Thank you.
complete waste of time and energy, i dont give a fuck what you call it just fix it
I guess that after some years, researchers and patients post Covid syndrome will realize that many of these patients are undistinguishable from ME. I wonder what will happen in the future. Maybe people with ME will start to see physicians treating Covid patients, and vice versa.
For now, post Covid syndrome benefits from knowledge from past ME research, as well as being able to compare to ME. This is also the way find out if ME and post Covid can be considered to be equal or similar.
I think the “normal” thing would be that many cases of ME arise as a result of a Covid infection, as it is known that infections trigger ME. It would be an unexpected finding if Covid does not trigger ME.
In the case of Covid, a separate lane has been created. In the case ME after swine influenza, a separate lane was not created.
I think it is always good to compare characteristics depending on onset in research. Although, this can be difficult if there are only few participants in a study.
I have a feeling that people with post Covid syndrome keep for them selves and avoid ME communities. I do not know if it is because they believe that they are different or if they do not know enough about ME.
I guess that there are some physicians and researchers think that post Covid is something unique and new, because they do not have knowledge about ME. But in reality it was highly anticipated that many would get ME from Covid.
I think it is important that research in ME continues to include post infectious cases, as well as a higher level of focus, interest and funding.
The future will tell how post Covid fatigue syndrome and ME will merge. I guess a lot depends on politics and funding. Researchers will use the term of the patients that is most beneficial for getting funding. If there are a lot money in the bag for one label (ME or Covid) then that label will be used in the scientific report.
Thank you so much for this qualified contribution.
I am trying to get awareness for correct naming. I am trying hard, but with little sucess.
But without calling the desease by ITS Name, we will continue to bei ihnored.
It is absolutely horrible what the Long-COVID awareness, diagnosis, and research has done to the ME/CFS community (for several reasons). I agree 100% that it is more appropriate to identify the Haulers as people with COVID-induced ME/CFS.
I’ve been frustrated for two years now about this stuff. Our own organizations are seemingly abandoning us. Every title of these articles is about Long-COVID. I get it that there are parallels, but we have been suffering for decades!
Our “name” and awareness of OUR disease should be recognized more, not pushed to the side to make room for the COVID-Induced Newbies.
Regarding these doctors who think that ME/CFS is just fatigue, we need to move on. We must realize and unapologeticly vocalize that doctors who still believe the “just fatigue” thing, are a disgrace to the medical community. They should be called out for their – frankly – stupidity. This disease was identified decades ago. There is no excuse anymore.
Let’s say to these doctors – “remember when doctors didn’t believe in AIDS? Remember when MS was called ‘hysterical paralysis’? How much do we admire those doctors? Aren’t those doctors literally made fun of for their ignorance and inability to, ya know, read?”
I have docs who have known of this disease for at least a decade and they continue to read research and respectfully help patients to the best of their ability. If there are docs out there who can’t figure out how far behind they are – call them out and ask them where in the heck they’ve been. Tell them that the research and evidence of this disease is everywhere, all over the world. Look at them with total confusion and ask say something like “You’re not familiar with M.E.?” Look astonished — because you should be. Any medical practitioner who thinks this is a B.S. disease is actually a B.S. practitioner.
I have suffered tremendously and many of you also have. It’s time we drop the “CFS” part completely and say M.E. This is a life-devastating disease. Respect will come when we get our title straight, when we start pulling the Haulers into our category, and when we demand respect.
I have explained to three docs now that “out of the respect for all of the patients who have suffered with this disease, I will only refer to it as M.E.” I nicely explain that I just want to make sure we’re on the same page…
To all of my fellow sufferers I want to say that YOU are the strong. When it comes down to it, no matter how weak we feel, or how much we collapse and cry… We are the strongest people we will ever meet.
Say it out loud. Say it about yourself. We are the warriors.
Hang in there, friends. Don’t let ignorant doctors get to you. Feel sorry for them. It really IS sad.
Lastly, let’s just get the ball rolling. Start referring to these LONG-COVID people as the COVID-INDUCED M.E. patients.
Peace, love, and healing!
Jen,
1000% feel your frustration! I have been struggling with symptoms of ME since college (1991), only to officially be diagnosed on May 23, 2023. Sadly, I am the one who brought ME/CFS information to my PCP, after a simple Google search “2023 HELP unknown debilitating fatigue symptoms”. Since then, I saw a renowned Specialist (Baltimore’s Top Doctor) who was not familiar with ME/CFS. He went above and beyond to test/rule out reason sent, but also listened, cared, empathized, learned and referred me to 2 additional renowned specialist and genetic counseling. Needless to say, it was that appointment I’ve been searching for my entire life, I see the next Specialist tomorrow and feel like the ball is finally rolling towards potential root answers.
I will continue to bring copies of “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness – Clinician Guide” to every future appointment. In fact, I dream of sending a copy to every past Specialist, especially the dismissive ones! 🙂
My 2 cents? Perhaps the reason Long COVID is swallowing ME/CFS is the “miraculous” funding received for a worldwide demand for answers. ME/CFS funding has gone by the wayside far too long, but is now gaining a platform due to a worldwide pandemic. So as absolutely traumatizing it is that ME/CFS has been ignored, perhaps confusion with the “newbies” is simply the price we will have to pay? Even if a backhanded smack to the face, I sincerely hope it leads to recognition and treatment for ME/CFS. Like you said, WE ARE THE WARRIORS, but more specifically, WE ARE THE OG WARRIORS! 🙂
“Knowing is not enough; we must apply.
Willing is not enough; we must do.”
—Goethe
We are all in this fight together! Thanks for every single person in this community! Warm Regards, Robbi
Love it! Nice quote as well 🙂
Whrn studies are done on long-covid indiciduals – are scientists/researches/doctors observing/considering the vaccinated vs the unvaccinated, and further, the vaccinated with mRNA technologies vs ‘traditional’ vaccines?
For example, the study that cites distinct plasma differences with ME/CFS – ho can we know yhose differences are due to getting sick with Covid or being vaccinatdd eith mRNAs? Etc
I just wonder how much is this variable affecting results.
Language makes a big difference. I developed my ME from Viral Meningitis. Meningitis charities have a long list of “after effects” that are (bar deafness) identical to ME. But the concept of “long Viral Meningitis” isn’t in the medical lexicon, it’s not even a “thing”. They don’t talk of ME but instead of an ABI acquired brain injury.
If I say I have an ABI after viral meningitis I’d get treated completely different to if I say I have a neuro-immune disease called ME. But I’m describing the same syndrome. A rose by any other name….?
My disease has altered dramatically over time and was definitely more like LC at the outset.
The section about the risks for Long Covid research is spot on, and alarming. it’s basically the history of what happened in ME research. The early failure to identify specific subgroups is what made the illness seem vague, flaky and susceptible to psychologisation and is what has prevented meds being approved when they clearly helped elements of the population.
I really hope government and LC patients take note and work with ME groups to drive change. I’ve got no desire to watch the same slow motion car crash happen a second time for the next 40 years killing my last remaining hopes for a accessible treatment in my lifespan.
From a researcher perspective if it looks “novel” that is boost funding stream for new projects so there’s no incentive to resolve the issue. It has to come from us.