Chronic fatigue syndrome may hold keys to understanding post-Covid syndrome: David Tuller and Steven Lubet July 21, 2020

[rvallee]

But I still don't get, on general principles, why post-covid seems to get this special exemption from being put into the ME box. Yes, I get it's a pandemic and the scale of things is just so much larger, but the usual way of dealing with people who have a post-infectious condition is to look at the symptoms, compare them to the guidelines, and then apply those guidelines to those who match them - if it's different for post-covid then it should be different for all the post-EBV, post-measles, post-whatever that previously have just been lumped into ME. If we are arguing that post-covid should be more deeply investigated, and I'm not arguing against that, then that argument should apply to us all and that should be pointed out repeatedly to the medical establishment, and I worry that it won't.

I think that's just down to the decades of dogmatic assertions that ME is defined as having no biological cause and post-COVID does so it's different.

It's just a silly artifact of people arguing in bad faith to support their ideology. It was always nonsense given the numerous post-infectious syndromes. That's just what happens when unserious people get involved in something they don't understand: they break things.

For decades the field has been plagued by differences not of opinions but of facts. It will take more than a few weeks to resolve decades of nonsense, but it's not much more complicated than that.

 

[Hoopoe]

I believe the "no known cause" part of the Fukuda criteria is there because they were intended for research. The long list of exclusions is there for the same reason.

It doesn't mean knowing the pathogen that triggered the illness excludes a person from receiving the diagnosis.

 

[Barry]

Well, I think it is an excellent article. I dont think it would be right at this stage to assert that people suffering post Covid symptoms will be diagnosed with ME/CFS. It's too early to know what is happening. Some appear to have lung damage, some may have other organ damage and blood clots are causing problems that are not part of ME. Others appear to have PVFS, which may resolve.

I agree. If we commit the serious error of presuming to know the science before the science is known, then we undermine our credibility in the eyes of good scientists. The last thing we need.

Sure, you could say if you have these symptoms at six months you meet definitions of ME. But that doesn't automatically mean people will be having the same things.

Quite so. Fauci said "you can see people who’ve recovered who really do not get back to normal that they have things that are highly suggestive of myalgic encephalomyelitis and chronic fatigue syndrome." When he says that something is "highly suggestive of" he is clearly not saying it is the same, simply cautioning of the possibility.

But I still don't get, on general principles, why post-covid seems to get this special exemption from being put into the ME box.

If we jump in too quickly with over-confident assertions, that then prove to be wrong, it would open the way for people to discredit us as trying to exploit Covid 19 for our own advocacy ends.

 

[Kitty]

I believe the "no known cause" part of the Fukuda criteria is there because they were intended for research. The long list of exclusions is there for the same reason.

It doesn't mean knowing the pathogen that triggered the illness excludes a person from receiving the diagnosis.

And indeed, 'cause' is distinct from 'trigger'. Arguably we still don't know the biological cause of the symptoms, even though a proportion of us can identify one or more likely triggers [edited to add] for our ME.

 

[Mij]

Yet currently how many different triggers are identified by the ME/CFS patient population? Why should those post-Covid19 patients who meet ME/CFS criteria not be diagnosed with ME/CFS just because they have one specific trigger?

My only concern is that post COVID syndrome and ME will muddle PEM with fatigue exertion. I would like PEM to stay distinctive until we have a biomarker. I continue to have viral re-activations and experience symptoms to PEM, but they are not the same.

 

[Andy]

If we jump in too quickly with over-confident assertions, that then prove to be wrong, it would open the way for people to discredit us as trying to exploit Covid 19 for our own advocacy ends.

And I'm talking about the medical establishment making over-confident assertions by dumping a lot of post-infectious issues into the ME box while currently I'm seeing a lot of effort seemingly being made to avoid the same thing with post-covid issues. It's the double standard that I'm trying to highlight.

 

[Kirsten]

Really interesting questions. I think i read that men appear to be more likely to get Covid 19 itself. I wonder if that affects the numbers for long-covid much?

Edited to add: Sorry the quote thing didn't work, too tired to figure out where i went wrong. It was referring to Tia's post on page 1.

 

[Jaybee00]

This thread is starting to give me the heebie-jeebies.

1) There is no definitive biomarker for ME/CFS
2) In light of no definitive biomarker, the disease or the syndrome called ME/CFS is diagnosed based on symptoms
3) If you have the symptoms for 6 months then you have ME/CFS (by definition)
4) If you have lung damage from Covid-pneumonia and have difficulty breathing, etc., and that is your symptom, then you don't have ME/CFS
5) If you had Covid and now have ME/CFS and you want to say you have Covid-triggered ME/CFS, that is OK by ME
6) If you have all the symptoms of ME/CFS for more than 6 months, but you claim you have a completely different novel disease called "super-long covid" or whatever, then you would need to show some scientific evidence to demonstrate this claim that you have a completely different disease that has the exact same symptoms as ME/CFS

It might be a plan to oppose this.

Yes! It will be very bad for everyone if people start spending millions of dollars to research the novel disease "super-long Covid", when it is the exact same disease/syndrome as ME/CFS

 

[Snow Leopard]

And I'm talking about the medical establishment making over-confident assertions by dumping a lot of post-infectious issues into the ME box while currently I'm seeing a lot of effort seemingly being made to avoid the same thing with post-covid issues. It's the double standard that I'm trying to highlight.

Exactly!

"It's not a Post-Viral-Syndrome, it's unusual symptoms caused by the virus" is the same experience most ME and CFS patients went through. I understand why patients and some doctors are reluctant to apply the PVS/PVFS/CFS labels - they know that those labels are toxic.
Yet they don't admit this means a double standard has long applied to all those people who had other infections as the trigger.

 

[Amw66]

And I'm talking about the medical establishment making over-confident assertions by dumping a lot of post-infectious issues into the ME box while currently I'm seeing a lot of effort seemingly being made to avoid the same thing with post-covid issues. It's the double standard that I'm trying to highlight.

This
Too many reputations at stake.

 

[ukxmrv]

This thread is starting to give me the heebie-jeebies.


6) If you have all the symptoms of ME/CFS for more than 6 months, but you claim you have a completely different novel disease called "super-long covid" or whatever, then you would need to show some scientific evidence to demonstrate this claim that you have a completely different disease that has the exact same symptoms as ME/CFS

Yes! It will be very bad for everyone if people start spending millions of dollars to research the novel disease "super-long Covid", when it is the exact same disease/syndrome as ME/CFS

We do have precedents for this through in the UK. When CFS was invented there was already an existing body of patients who had been diagnosed with ME as per Ramsay including Royal Free and other outbreak cluster survivors.

This group was relabeled as CFS with no research or serious scientific consideration given into the two diseases as being the same. No one tested the two populations to see what the differences and similarities were. Patients were ignored.

I vaguely remember it was the CMO?

Over time the ME has come back a little and given us ME/CFS and CFS/ME.

 

[chrisb]

There was no need for research. ME was a spurious disease concept. The Americans told them so. And they had been persuaded by M and B. But they did give us Imdoden, Canter and Cluff in exchange.

We are eternally grateful.

At least it gave Edwards some support.

 

[ladycatlover]

Does anyone know 'long-covid' is affecting both genders at the same rates? From what I've seen (very little) it seems to be fairly equal. Yet ME seems to affect women at a higher rate.

I've rather given up reading every single Long Covid story that comes up on Google or Twitter, but my feeling is that there seem to be more stories from women than men. Perhaps it is just the press prefer to interview women about it, or men don't want to be interviewed about it? I may well be wrong, I imagine any difference between the genders will become more obvious as time goes on.

(Edited to remove superfluous word.)

 

[Arnie Pye]

Does anyone know 'long-covid' is affecting both genders at the same rates? From what I've seen (very little) it seems to be fairly equal. Yet ME seems to affect women at a higher rate.

I read that men were at greater risk of being infected with Covid-19 than women. Perhaps this, plus the fact that more women develop ME, ended up with a situation where the rates of people developing "long-covid" were more evenly spread between male and female than is usually the case with ME.

 

[Snow Leopard]

I read that men were at greater risk of being infected with Covid-19 than women. Perhaps this, plus the fact that more women develop ME, ended up with a situation where the rates of people developing "long-covid" were more evenly spread between male and female than is usually the case with ME.

No. Simply that old men have greater case fatality rates (which in turn is due to greater underlying health risk factors). Women are just as susceptible to COVID-19 as men, but in some countries, young women are more likely to be exposed to the virus and hence have higher cases among women.

https://www.health.gov.au/sites/def...virus-covid-19-at-a-glance-infographic_19.pdf

https://www.statista.com/statistics/1115083/coronavirus-cases-in-england-by-age-and-gender/

https://www.medrxiv.org/content/10.1101/2020.05.24.20111765v1.full.pdf

I thus predict that "post-covid" is significantly more common in women than men.

 

[Mithriel]

1) There is no definitive biomarker for ME/CFS
2) In light of no definitive biomarker, the disease or the syndrome called ME/CFS is diagnosed based on symptoms
3) If you have the symptoms for 6 months then you have ME/CFS (by definition)
4) If you have lung damage from Covid-pneumonia and have difficulty breathing, etc., and that is your symptom, then you don't have ME/CFS
5) If you had Covid and now have ME/CFS and you want to say you have Covid-triggered ME/CFS, that is OK by ME
6) If you have all the symptoms of ME/CFS for more than 6 months, but you claim you have a completely different novel disease called "super-long covid" or whatever, then you would need to show some scientific evidence to demonstrate this claim that you have a completely different disease that has the exact same symptoms as ME/CFS

Yes! It will be very bad for everyone if people start spending millions of dollars to research the novel disease "super-long Covid", when it is the exact same disease/syndrome as ME/CFS

ME never needed a six month wait to be diagnosed. It was diagnosed if you had an infection which did not resolve and left you with certain set of symptoms - variability of symptoms and an abnormal response to exercise.

Doctors who were familiar with ME could recognize a lot of other symptoms such as temperature problems, vertigo and so on, so people who did not have an obvious infection could be diagnosed as well.

The six month's wait was brought in inexplicably by the CDC to describe a disease which they had been called in to look at because so many people were getting sick at once, not because they were not getting better for six months. In its wisdom they called it CFS.

It is possible that the BPS people will allow long covid and ME to be similar diseases and insist they have always been looking at CFS, in the same way they claimed that the PACE trial was never meant to be about ME.

 

[Jaybee00]

All except ICC require 6 months

 

[Sly Saint]

View attachment 11559

All except ICC require 6 months

NICE guidelines

1.3.1 Making a diagnosis
1.3.1.1 A diagnosis should be made after other possible diagnoses have been excluded and the symptoms have persisted for:

• 4 months in an adult
  
  
• 3 months in a child or young person; the diagnosis should be made or confirmed by a paediatrician.

so a lot of 'long-covid patients' are now at a stage when they could be diagnosed.

 

[chrisb]

Quick! Someone! Get some Guidelines written for "Long-Covid".

 

[Mithriel]

View attachment 11559

All except ICC require 6 months

These were all developed after CFS. One of the harms that was done to us by the invention of CFS was the artificial categories of a 6 month wait and the emphasis on fatigue which muddled the character of the disease.

The 6 months wait was because they wanted it confused with chronic fatigue, a common symptom of many diseases, and they wanted the association with the original infection destroyed so they could present ME as a new form of neurasthenia to be treated psychologically.

If you have to wait a month after the car crash to treat the broken leg you don't have to pay out on the insurance. It distorts the view of the disease which is that you get an infection but it does not resolve. Now if they said that it has to be six months after an initial infection with no recovery that would be one thing but that bit is left out.

They could then have a clause that anyone with this set of symptoms for over 6 months could have ME of unknown cause but that emphasis is not there.

When a diagnostic test is found I expect it to be positive within a few weeks.