Evidence that "Long Covid" is different from ME/CFS?

Jaybee00 said:
Can folks point out any studies that demonstrate that "Long Covid" at six months with MECFS symptoms is a distinct disease/syndrome/entity from ME/CFS? I remember Nath commenting on this, but I don't remember where I saw this. I'm seeing way too many articles in the popular press that discuss Long Covid with MECFS-type symptoms, that either don't mention MECFS at all, or if they do, they use verbiage like "similar to" MECFS

Thanks.
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I think "ME/CFS-type symptoms" is actually the appropriate form in the context of general articles about Long COVID.

Long COVID is an inexact short hand for a plethora of symptoms which include some that are of known pathophysiology, affecting a range of organs, some in ways that are identifiable, and the whole being expressed variably without a clear common pattern of disease across a large and so far poorly characterised population.

ME/CFS is a specific term for a condition identified by exclusion of known pathophysiology and which affects (in scientific literature at least) a reasonably well described patient population.

These are two very different concepts.

We currently have no idea whether there are distinct pathophysiologies to be found within the ME/CFS patient population although that seems entirely possible. If infection is an initiating factor – and to date we have only the untestable anecdote of patients that acute illness = ME/CFS onset – then COVID 19 initiated ME/CFS may be different from say EBV initiated ME/CFS but until we have evidence of causal and/or initiating pathology there is no way to make a distinction.

However the inability to make a pathophysiological distinction between possible causes/initiators of ME/CFS doesn’t mean that there’s a basis to conflate a putative cause/initiator – in this case COVID 19 infection - with ME/CFS.

It will be a clinical decision whether an individual is diagnosed with ME/CFS following COVID 19 infection. Under the current state of knowledge it is axiomatic that diagnosis can’t establish any pathological link with COVID 19 so the clinician, having excluded any testable pathology, and noting the presence of the qualifying symptomology should give a diagnosis of ME/CFS wholly independent of any previously noted COVID 19 infection. If the patient has symptoms other than those that are typical of ME/CFS then by the logic of an exclusionary diagnosis those symptoms should be explored before an ME/CFS diagnosis is given.

It’s conceivable that comorbid diagnoses could be given but again logically that should only happen where a comorbidity with ME/CFS is established by investigation and is subject to treatment additional to managing ME/CFS.
 
Wyva said:
Are there any sources about this available online? These are quite prominent symptoms for me and I'd love to read more, especially about the water balance issue that badly affects me but only seems to affect a very small number of patients otherwise (and thus I struggle to find decent info about it).
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A long time ago, there was a study done which looked at the hormones involved in water regulation and found differences in diurnal timing in people with ME but it is more anecdote than anything. There has been so little research into the basic symptomology of ME that anecdote is all we have for some things.

lunarainbows said:
This only describes mild & moderate PwME though, surely? I think I’ve seen you mention this elsewhere too when talking about Ramsays disease, and how it was about variability rather than fatigue - and I felt confused then as well. PwME who are severe don’t have variability, I thought? Not huge variability, anyway. I thought they tend to feel very ill and very exhausted / fatigued, day in day out, and then when they exert themselves a little, feel even worse?
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In MS there is great variability in the symptoms people develop as these depend on the areas of the body affected, but if it develops into severe disease people become very similar. A similar process probably happens in ME as the sicker you become the less room there is for variability.

For my own understanding, I think of mild ME as being when only a few cells are affected by damaged aerobic respiration (sometimes too few to realise the disease has started) but continual stress on the system leads to more damaged cells until there comes a point where there are so few left that people can do hardly anything. Whitney Dafoe says that if he struggles to do something trivial it causes him to become even sicker.

Severe and very severe ME in particular is important for our understanding in some ways but in others it can confuse the issue because every part of living is so damaged by the consequences of disease as well as the disease itself it can be hard to pick out issues. (I have diabetes which I believe is caused in part at least by the years of ME. Now it is difficult to pick out what is severe ME and what are the effects of ME on a diabetic metabolism if you see what I mean.)

ME was called variable in that it was not a disease of painful joints or painful muscles or bad vision or paralysis but all these at different times. It is important to think of it this way because we see a doctor and they can't find problems with the joints or the eyes but there could have been signs to be found yesterday or tomorrow.

I dislike the emphasis on fatigue. It is too common and too ill defined so it has always spread confusion and not clarity.

The concept of ME as I found it in the early 80s was a more homogenous population than CFS picks out though the very severe were probably underrepresented because there was no communications they could access. I did meet a few who were bedbound.

It may well be that ME as I knew it is just a subset of ME/CFS or even a different disease process altogether. There is a wide range of symptoms of people on the forum - or maybe that is just the natural variability of the disease! :)
 
CDC and HHS pages on Long COVID make it very clear that at least from the US Gov perspective LC is a clinical concept wholly separate from ME/CFS

CDC.gov Post-COVID Conditions: Information for Healthcare Providers

https://www.cdc.gov/coronavirus/201...019-ncov/hcp/clinical-care/late-sequelae.html

Includes:

"Post-COVID conditions are being referred to by a wide range of names, including long COVID, post-acute COVID-19, long-term effects of COVID, post-acute COVID syndrome, chronic COVID, long-haul COVID, late sequelae, and others, as well as the research term post-acute sequalae of SARS-COV-2 infection (PASC).external icon Although standardized case definitions are still being developed, in the broadest sense, post-COVID conditions can be considered a lack of return to a usual state of health following acute COVID-19 illness. Post-COVID conditions might also include development of new or recurrent symptoms that occur after the symptoms of acute illness have resolved."

...............................................

"We use post-COVID conditions as an umbrella term for the wide range of health consequences that are present four or more weeks after infection with SARS-CoV-2. The time frame of four or more weeks provides a rough approximation of effects that occur beyond the acute period, but the timeframe might change as we learn more.

It can be difficult to distinguish symptoms caused by post-COVID conditions from symptoms that occur for other reasons. Patients experiencing the acute and post-acute effects of COVID-19, along with social isolation resulting from COVID-19 pandemic prevention measures, frequently suffer from symptoms of depression, anxiety, or mood changes. Alternative reasons for health problems need to be considered, such as other diagnoses, unmasking of pre-existing health conditions, or even SARS-CoV-2 reinfection. For clinicians considering whether new symptoms could be explained by reinfection, please refer to the CDC guidance on investigating suspected reinfection."


HHS.gov Guidance on “Long COVID” as a Disability Under the ADA

https://www.hhs.gov/civil-rights/fo...ovid-disability/index.html#footnote10_0ac8mdc

Includes:

"1. What is long COVID and what are its symptoms?

According to the Centers for Disease Control and Prevention (CDC), people with long COVID have a range of new or ongoing symptoms that can last weeks or months after they are infected with the virus that causes COVID-19 and that can worsen with physical or mental activity.

Examples of common symptoms of long COVID include:


    • Tiredness or fatigue
    • Difficulty thinking or concentrating (sometimes called “brain fog”)
    • Shortness of breath or difficulty breathing
    • Headache
    • Dizziness on standing
    • Fast-beating or pounding heart (known as heart palpitations)
    • Chest pain
    • Cough
    • Joint or muscle pain
    • Depression or anxiety
    • Fever
    • Loss of taste or smell
This list is not exhaustive. Some people also experience damage to multiple organs including the heart, lungs, kidneys, skin, and brain"

...........................................

"a. Long COVID is a physical or mental impairment

A physical impairment includes any physiological disorder or condition affecting one or more body systems, including, among others, the neurological, respiratory, cardiovascular, and circulatory systems. A mental impairment includes any mental or psychological disorder, such as an emotional or mental illness.

Long COVID is a physiological condition affecting one or more body systems. For example, some people with long COVID experience:
  • Lung damage
  • Heart damage, including inflammation of the heart muscle
  • Kidney damage
  • Neurological damage
  • Damage to the circulatory system resulting in poor blood flow
  • Lingering emotional illness and other mental health conditions
Accordingly, long COVID is a physical or mental impairment under the ADA, Section 504, and Section 1557."
...........................................

"Long COVID can substantially limit a major life activity. The situations in which an individual with long COVID might be substantially limited in a major life activity are diverse. Among possible examples, some include:
  • A person with long COVID who has lung damage that causes shortness of breath, fatigue, and related effects is substantially limited in respiratory function, among other major life activities.
  • A person with long COVID who has symptoms of intestinal pain, vomiting, and nausea that have lingered for months is substantially limited in gastrointestinal function, among other major life activities.
  • A person with long COVID who experiences memory lapses and “brain fog” is substantially limited in brain function, concentrating, and/or thinking."
 
I think that the broader picture is being missed here. It's not that LC=ME, it's that LC=MUS, which includes ME/CFS, fibromyalgia, IBS, dysautonomia, FND and a whole bunch of other diagnoses that medicine mismanages because the cause is always disputed. Without the context of the pandemic, or if it had happened before social media, every long hauler would have been given a number of such BS diagnoses, along with many psychosomatic ones.

This has to be thought wider than just ME. I don't think medicine is ready for that, unfortunately. But there's no point getting lost in this. We are well familiar here with the overall issue of MUS, how the construct is arbitrary, usually based on someone's preference for a "primary symptom" of something or another. And then there's the dozens of made-up acronyms of the same thing.

It's also causing new-onset allergies and diabetes, strokes, heart inflammation, lung damage and a bunch of other things that normally would never be possible to attribute the proper cause to. Not as a technical limitation, rather as a political and ideological need to maintain the rule of psychosomatic medicine in this area. And tradition. Because sometimes failure can be a tradition.

Common infections cause all sorts of long-term health problems. This is the new chapter to the germ theory of disease that needs to be written, one left blank on purpose. It's way more than just about us, we're just the textbook example of how this failure was applied and are the only ones with even minimal understanding of PEM, making ME more relevant more by, well, a tradition of failure.
 
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