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

[Sly Saint]

Some survivors of acute bouts of Covid-19 experience a range of persistent medical issues — some lasting for weeks, or even months — that include profound exhaustion, trouble thinking or remembering, muscle pain, headaches, and more. One survivor described it as feeling like she was “hit by a truck.”

Anthony Fauci, the country’s top infectious diseases expert, acknowledged this month that the symptoms in many of these unrecovered patients are “highly suggestive” of myalgic encephalomyelitis, the disabling illness also commonly called chronic fatigue syndrome or ME/CFS. “This is something we really need to seriously look at,” said Fauci.

Fauci’s observation, echoed by others, is vitally important, and not only because it provides a warning about the pandemic’s potentially devastating long-term health effects. By noting the possible connection between “post-Covid syndrome” and ME/CFS, Fauci has highlighted the long-neglected field of post-viral illness — a poorly understood phenomenon that likely holds important clues about the causes of, and treatments for, both conditions.

https://www.statnews.com/2020/07/21/chronic-fatigue-syndrome-keys-understanding-post-covid-syndrome/

 

[Kalliope]

Great opinion piece! Many thanks to the authors!

STAT has shared it on social media, for those who want to like and/or comment there

 

[Esther12]

Great opinion piece! Many thanks to the authors!

STAT has shared it on social media, for those who want to like and/or comment there

That's a point - showing interest to STAT by sharing/RT is probably a good idea. Thanks to Tuller and Lubet.

 

[dave30th]

That a point - showing interest to STAT by sharing/RT is probably a good idea. Thanks to Tuller and Lubet.

and commenting. they notice comments.

 

[Hoopoe]

Sad to see the true ME crowd spreading their misinformation in the comments.

Yes, I think some of what they are saying is misinformation, not merely difference of opinion. For example in ME there is no encephalomyelitis (it was an initial suspicion that turned out to be incorrect, not an established fact), and not even Ramsay believed that ME was only caused by enteroviruses.

I can picture some doctors rolling their eyes at these comments and deciding we're best treated by psychiatrists with expertise in false illness beliefs.

We need a united patient community, not a divided one.

 

[Esther12]

We need a united patient community, not a divided one.

I don't want to unite with them!

 

[Jaybee00]

Although I applaud the general goal of this article, I believe it has some problems/inaccuracies.

1) This authors beat around the bush about the "connection" between post-covid illness and ME/CFS

By noting the possible connection between “post-Covid syndrome” and ME/CFS, Fauci has highlighted the long-neglected field of post-viral illness — a poorly understood phenomenon that likely holds important clues about the causes of, and treatments for, both conditions.

It would have been better for the authors to state explicitly that after 6 months, people with symptoms X, Y, Z (depending on the diagnostic criteria) HAVE ME/CFS. It doesn't matter if the trigger was Covid, Ebola, EBV, tick bite, alligator bite, iatrogenic cause, unknown cause, mold, etc. It doesn't help to use words like "possible connection" (even if Fauci used these words). By not being explicit, you are going to have post covid people at 6 months or a year after infection saying that they have "Post Covid", when, in fact, according to existing diagnostic criteria they have ME/CFS. This will further bifurcate the patient community and I'm sure that 6 months from now we will have people on twitter claiming that they don't have ME/CFS but rather have "Post Wuhan Covid 19 strain A1B2 disorder, which is something completely different from ME/CFS". And this becomes a problem because it undermines fundraising and research for the "syndrome" of ME/CFS, e.g. these folks won't support ME/CFS research because they believe they don't have it.

This is the way I have would have written this "Although neither of us are physicians or biomedical researchers, based on anecdotal reports, it appears very likely that a percentage of Covid survivors will be diagnosed with ME/CFS."

2)

The cardinal symptom is not fatigue per se, but a prolonged relapse of exhaustion, cognitive dysfunction, and other symptoms after a minimal amount of activity. This is generally called “post-exertional malaise.”

This statement is not true. For example, under the CCC criteria there are four "cardinal" symptoms or signs. If you do not have fatigue (per se or otherwise), you do not have ME/CFS

1 Fatigue
Required The patient must have a significant degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that substantially reduces activity level.
2 Post-Exertional Malaise and/or Post-Exertional Fatigue
Required There is an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability, post-exertional malaise and/or post-exertional fatigue and a tendency for other associated symptoms within the patient’s cluster of symptoms to worsen.
There is a pathologically slow recovery period – usually 24 hours or longer.

3 Sleep Dysfunction*
Required There is unrefreshing sleep or sleep quantity or rhythm disturbances such as reversed or chaotic diurnal sleep rhythms. Note that patients without sleep dysfunction can still meet the diagnostic criteria if their illness began with an infection — see * below.
4 Pain*
Required There is a significant degree of myalgia. Pain can be experienced in the muscles, and/or joints, and is often widespread and migratory in nature. Often there are significant headaches of new type, pattern or severity. Note that patients without pain can still meet the diagnostic criteria if their illness began with an infection — see * below.


A cardinal symptom or sign does not mean one symptom. For example, inflammation has 5 cardinal signs (from wikipedia).

Inflammation is characterized by five cardinal signs:

• rubor (redness),
• calor (increased heat),
• tumor (swelling),
• dolor (pain), and
• functio laesa (loss of function).

3.

Why some people are vulnerable to these chronic symptoms isn’t known

This statement is not completely true. See here https://www.s4me.info/threads/human...syndrome-me-cfs-fluge-mella-et-al-2020.14329/ Lande et al. identified 2 HLA risk alleles that likely predisposes people to contract ME/CFS

I'm done.

 

[Trish]

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.

 

[Hoopoe]

@Thrish I believe the lung damage is from the immediate effects of the infection. The lingering symptoms could be due some different process which produces a ME/CFS-like syndrome. In this case it wouldn't make sense to create a new syndrome that is ME/CFS plus lung damage.

Similarly, the blood clotting could be due to a process that once again is separate from the one that causes a ME/CFS-like syndrome.

Time will tell whether covid 19 specific problems are connected or separate from the ME/CFS-like syndrome. If they are connected then it might make sense to create a specific post covid 19 syndrome.

 

[Trish]

I think we are agreeing, strategist. There are likely to be lots of post Covid patients who end up being diagnosed with ME. My point was simply that it's too early to tell whether there will also be a group who have long lasting symptoms from other Covid specific organ damage who may or may not have ME as well. I suspect they may separate out into different subgroups, some who recover, some who suffer lasting organ damage, and some with ME.

 

[Kitty]

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.

Me too – and actually, I think the statement about fatigue not being the cardinal symptom per se comes from ME patients. I've heard numerous people either describe it as a lack of power, or say that it arises from previous activity (and is therefore part of PEM). I find it impossible to separate 'pure' fatigue and PEM myself; it's impossible to spend a few days avoiding everything that triggers PEM, including eating, toileting, and exposure to light and sound, to find out.

 

[Andy]

Time will tell whether covid 19 specific problems are connected or separate from the ME/CFS-like syndrome.

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?

 

[Jaybee00]

Why should those post-Covid19 patients who meet ME/CFS criteria not be diagnosed with ME/CFS just because they have one specific trigger?

Yes, this was my point. If you meet the various diagnostic criteria, at 5 months 30 days you still have "post-covid". By definition, if you meet the criteria at 6 months you have ME/CFS. If experts want to change this threshold to 8 months or to 4 months, I wouldn't object. If "experts" want to create a new disease called "Post Covid XYZ", which has the EXACT same symptoms as ME/CFS, we all should object to this, because as I mentioned above, it will dilute fundraising and research efforts.

I can pretty much guarantee that there will be many "experts" publishing articles/submitting manuscripts in the next year where they have identified a "new post-covid disease" with symptoms remarkably similar to ME/CFS. And unless they can provide overwhelming evidence that their newly described "Postcovid ME/CFS-like disease" is significantly different from "regular" ME/CFS, then they should be called out and their manuscripts should be rejected. Whether you broke your leg in a skiing accident or whether you broke your leg in a car crash, you still have a broken leg, you don't have a "post-skiing accident broken leg".

Which is why I wasn't comfortable with the sort of wishy-washy language (e.g. "possible connections") in the Tuller article. I would have preferred it if they explicitly stated that if you have these symptoms at six months, according to existing diagnostic criteria, you have ME/CFS.

Also, obviously, I am not referring to the pulmonary issues (or other direct organ damage), which may in fact be specific to Covid-pneumonia.

 

[Kitty]

If "experts" want to create a new disease called "Post Covid XYZ", which has the EXACT same symptoms as ME/CFS, we all should object to this, because as I mentioned above, it will dilute fundraising and research efforts.

Just to play devil's advocate for a minute – I can see a theoretical benefit, if the two did turn out to be the same.

New researchers and new funding might be brought in to post-Covid research, without some of the baggage that's been loaded onto to ME (which isn't our fault, or that of good researchers, but it's hard to dispute it exists).

It's implausible that anyone serious about biomedical research would try to claim that two conditions with identical symptoms are different, so it's an unlikely outcome...but nevertheless, I welcome any opportunity to advance biomedical research into post-viral illness that's opened up by the tragedy of Covid-19.

 

[dave30th]

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?

I think it's a bit more complicated than that, with everything going on in their bodies. Post-covid could encompass a wider range of things, there might be 10 or 20 types of post-covid, they might have symptoms to meet an ME criteria but other symptoms that are unique. we don't know enough. 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. I mean, everyone who has ME doesn't have the same thing. So I think insisting on the lines being exact when there are no exact lines isn't realistic until we know more. We barely have six months out yet.

 

[Andy]

I think it's a bit more complicated than that, with everything going on in their bodies. Post-covid could encompass a wider range of things, there might be 10 or 20 types of post-covid, they might have symptoms to meet an ME criteria but other symptoms that are unique. we don't know enough. 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. I mean, everyone who has ME doesn't have the same thing. So I think insisting on the lines being exact when there are no exact lines isn't realistic until we know more. We barely have six months out yet.

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.

 

[Wonko]

You are both right

Unfortunately we live in a world with vested interests, so one side, the side that lumped everything together, will probably now try and split off post covid from the rest, in order to remain 'right' in their eyes, and try and hold on to their reputations and power.

Because if they don't then they will be seen to be guilty of neglect, at best, for the last 30 years.

If people with the same type of symptoms can be found to be suffering from a biomedical ailment or several, then this might suggest that people suffering from the same symptoms might also have a biomedical cause(s).

So, in order not to be proved 'wrong' they have to split off long covid from us, and everybody like us, regardless of any 'facts'.

That's my take anyway.

It might be a plan to oppose this.

Because if they win, then both us and post/long covid are gonna get ......

ETA - Not that I am in any way suggesting that long covid is ME, or that it's the same thing I have, but the arbitrary separation when they meet the diagnostic criteria, for no other reason than their onset was covid - allowing that without challenge, would be 'wrong'.

There's rules, diagnostic rules - these should be followed, not just ignored because it's politically convenient to do so for some people.

 

[Kitty]

You are both right

About to say the same!

We need to include the possibility that post-Covid patients are left with two or more distinct conditions, such as the post-viral cascade of events that leads to ME plus lung scarring, neurological damage, etc.

It wouldn't be easy to separate the symptoms without extensive – and expensive – investigations and imaging, which would probably not be offered by most UK GPs unless there was significant evidence of lasting damage.

In most people, they'd be lumped together by doctors as a vague post-viral 'syndrome', leaving patients feeling excluded from ME groups because of their atypical symptoms, but also excluded from groups with diagnosed lung fibrosis or damage from micro-strokes.

I'm depressing myself now just thinking about what might lie ahead for some of these poor folk, so I'll shut up!

 

[Tia]

Excellent article.

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.

Also, I wonder if there is there a gender difference between people with post-viral fatigue who recover and people with pvf who go on to develop ME? Just wondering if men with pvf more likely to recover than women?

 

[Kitty]

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.

Also, I wonder if there is there a gender difference between people with post-viral fatigue who recover and people with pvf who go on to develop ME? Just wondering if men with pvf more likely to recover than women?

Really interesting and important questions. I haven't seen any analysis, but it might still be too soon to address your second one.