Chronic fatigue syndrome a possible long-term effect of Covid-19, experts say—CNN, Ryan Prior

[Sushi]

Chronic fatigue syndrome a possible long-term effect of Covid-19, experts say

Many are falling ill and staying ill

More than six months into the global coronavirus crisis, many who contract Covid-19 are not fully recovering.
Up to 35% of those diagnosed with Covid-19 were not back to their normal selves two to three weeks after testing positive for the coronavirus, according to a July 24 report by the US Centers for Disease Control and Prevention.... One of those still struggling with symptoms months later is CNN anchor Chris Cuomo, who first announced that he tested positive for the coronavirus on March 31...

 

[Wishful]

Sad for the victims, but probably good for ME research funding.

We may see a flood of new members here soon.

 

[Abrin]

Sad for the victims, but probably good for ME research funding.

This is exactly how I've been feeling.

Although my heart is literally breaking for these people because post-viral research has been ignored for decades, part of me has this flutter of hope that since the medical profession is going to have a hard time ignoring a huge influx of people then maybe I might actually be able to be healthy again before I die from old age.

 

[Hip]

There do not seem to be any figures yet for the percentage of people who get ME/CFS after catching coronavirus.

There are a few who report lingering long-term symptoms such as breathlessness after coronavirus, which I guess might arise from some lung damage. And maybe if there is lung damage, this might lead to systemic symptoms like fatigue. But that would not necessarily be ME/CFS.

I'd be interested to know what percentage actually satisfy the CCC or IOM definitions of ME/CFS.



Some long haul COVID support groups are found here:

Body Politic COVID-19 Support Group — 14K members. Communicate via team chat app Slack. Their post-COVID survey.

Long Covid Support Group (Facebook) — 15.8K members. Founded by Claire Hastie (Twitter), in partnership with the UK Sepsis Trust. Website: www.longcovid.org. DM article.

Long Haul COVID Fighters (Facebook) — 3.1K members.

 

[Diwi9]

The longer I am with my illness, the more agitated I am by all of the names. CFS is only a syndrome, so many ill people can fit the criteria. I don't know what "ME/CFS" actually is. We are all grouped under these names based on clinical symptoms alone. Post-COVID long-haulers may legitimately have CFS given time, but we are long overdue for a biomarker. What is CFS? What is ME? How are they related? Where does Post-COVID fit into the scheme? Does having a DX of Post-COVID make a diagnosis more legitimate in the medical system vs. everyone else who is post-viral "X" or CFS? Will the new patients join our league or take on a different diagnostic moniker and medical status/recognition? Does the specific viral trigger even matter in the long run?

I don't want Post-COVID to turn into CFS (or ME?) but if it turns out that we have many more included in our community for the real long-haul, I hope the media and political attention they receive leads to research, treatment, and legal status that can help us all.

 

[Gijs]

Good points DIWI9. I think we can take CFS as a start and make subgroups like CFS1 starts with EBV, CFS2 starts with stress, CFS3 starts with Qfever, CFS4 starts with Lyme, CFS5 starts with covid-19 etc...
And look within those groups if they also have POTS en IBS.

 

[livinglighter]

About two days ago on LBC radio, a member of the Long-COVID SOS campaign was sharing her experience and explicitly and repeatedly stated Long-COVID should not be considered the same as ME/CFS.

The organisation website says according to the Zoe COVID symptom study, 5% of people who contract Covid-19 remain unwell for months.
https://www.longcovidsos.org
https://covid.joinzoe.com/post/covid-long-term

I've read a few of the peoples accounts and their debilitating and frightening symptoms sound exactly like mines.

Just to add, a few days ago, BBC News also reported on the recent draft NICE guidelines which state chronic pain sufferers should no longer be offered pain medication, as it has been found to be unhelpful for some people and instead should undergo GET and CBT. I wonder how they will correctly distinguish between those who pain medication is helpful for and those who it is not? It sounds like the nonsense I've faced with ME/CFS and GET/CBT all over again.

https://www.nice.org.uk/guidance/GID-NG10069/documents/draft-guideline

 

[godlovesatrier]

I guess theoretically if 5% of people can get ME in any given population due to an under lying cause, metabolic trap, energy cell transfer (Davis), cell danger response (Naivaux). Then it makes sense that 5% of all those covid long haulers will be sick with symptoms outsid eof the ones Hip mentions above. These people would have got ME anyway and were just waiting for their trigger to manifest, as it did with us.

Then there's the second much larger percentage, which is anywhere from 30 to 45% (assuming 35 to 50% of patients who get covid become bound up with long term symptoms "long-covid"). These people would have a variety of symptoms brought on by covid for a variety of reasons. We still don't understand the damage it does to arteries and capillaries etc, which may be causing the long symptoms.

I must admit reading the accounts from long covid patients on twitter, I can't see anyone vastly recovering within hte PVFS 6 month criteria. However some will, so those would be removed from the number of overall patients suffering long term symptoms too.

I think in 6 months we will know what's going on. Personally I think 5-10% will get ME, this does depend on definition criteria being met as Hip states above though. The rest are going to get a long term covid specific illness.

One bit of hope though. In my mind there's no reason why the deregulation of the bodys system in covid19 and as it is triggered by other viruses can't have any clinical overlap with other viruses or diseases. So this may shed a little light on why our viral and bacterial triggers make us sick. But if I had to put money on anything I would say that the under lying reasons why we are susceptible to viruses making us sick at all, will still be of vast clinical significance for ME patients. I am just not sure how helpful covid will be, but if we are lucky the funding overlap with ME patients, with proper rigorous studies, that don't shy away from high quality medical and scientific study and control measures, will shed light on biomarkers. Fingers crossed.

 

[Hip]

About two days ago on LBC radio, a member of the Long-COVID SOS campaign was sharing her experience and explicitly and repeatedly stated Long-COVID should not be considered the same as ME/CFS.

That's understandable, because they see the world of ME/CFS, and they see a lot of abused ME/CFS patients who are told (incorrectly) that their disease is all in the mind, and they see the disease of ME/CFS which is dreadfully under-researched and largely ignored by doctors.

Not to mention the ME/CFS children forcibly taken away from their parents and coerced into doing damaging exercise therapy and useless cognitive behavioral therapy, against their will and the against the will of their loving parents.

So the COVID long-haulers know they are likely not going to get much attention from researchers if they place themselves under the ME/CFS banner.

However, as to the scientific question of whether or not long-haul COVID is ME/CFS, it's interesting that ME/CFS has around a 4 to 1 female to male ratio, and according to a survey conducted, long-haul COVID has a similar ratio, at 4.5 to 1. So that's one thing they have in common.

 

[livinglighter]

That's understandable, because they see the world of ME/CFS, and they see a lot of abused ME/CFS patients who are told (incorrectly) that their disease is all in the mind, and they see the disease of ME/CFS which is dreadfully under-researched and largely ignored by doctors.

Not to mention the ME/CFS children forcibly taken away from their parents and coerced into doing damaging exercise therapy and useless cognitive behavioral therapy, against their will and the against the will of their loving parents.

So the COVID long-haulers know they are likely not going to get much attention from researchers if they place themselves under the ME/CFS banner.

However, as to the scientific question of whether or not long-haul COVID is ME/CFS, it's interesting that ME/CFS has around a 4 to 1 female to male ratio, and according to a survey conducted, long-haul COVID has a similar ratio, at 4.5 to 1. So that's one thing they have in common.

It is devastatingly totally understandable...... I was hoping doctors would begin to listen to the ME/CFS community if COVID long-haulers accounted for their symptoms being similar to ours. But as you've kindly pointed out the data will start speaking for itself! It's just a bit infuriating and surreal to see what seems like long-haulers complaints being taken more seriously. Plus, doctors who ignored ME/CFS make "groundbreaking" recommendations based on what sounds like current scientific ME/CFS research.

I guess it's just a matter of being patient that all shall reveal itself.

 

[toyfoof]

Alyssa Milano was on Cuomo Primetime this week talking with him (and a doctor) about how they both had COVID at the same time and they both have lingering symptoms and don’t know what to do. The doctor said to check in regularly with her doctor, but they ran out of time and didn’t really get into it. I know Chris Cuomo has mentioned ME before, and I wonder if Alyssa is looking into it, too. She’s got an activist streak in her so, much as I would never wish this on anyone, she could be a good ally for us.

 

[Rufous McKinney]

Good to hear this is being discussed on CNN.

I wonder about this use of the term Chronic Fatigue Syndrome- while we have debated the term for many decades- please explain to me how it could possibly be appropriate term= for descriptions such as below, from the Mayo Clinic:

https://newsnetwork.mayoclinic.org/discussion/long-term-symptoms-complications-of-covid-19/

EXCERPTS:

"We're really seeing a number of reports of people who report long-term fatigue, headaches, vertigo (and), interestingly enough, difficulties with cognition, hair loss, cardiac issues, and diminished cardiorespiratory fitness. And I think what we're going to find out is that a large portion ― not all, but a large portion of that ― is likely to relate to the significant cellular-level damage that this virus can cause," says Dr. Poland.

Some of the possible long-term effects can affect even patients who are asymptomatic or have mild cases of COVID-19.

"I think it's an argument for why we take this disease so seriously," says Dr. Poland. "People who are thinking, especially young people: '(It's a) mild disease, you know. I might not even have any symptoms, and I'm over it.' Whoa. The data is suggesting otherwise. There's evidence of myocardial damage, cardiomyopathy, arrhythmias, decreased ejection fractions, pulmonary scarring and strokes.

"And then in the more acute phase, extending out for a month or two, has been this really interesting issue of coagulation abnormalities, which have been responsible for both small-vessel and large-vessel arterial and venous occlusions. So this can be a really wicked virus in some people," says Dr. Poland.

"We're going to see more and more of the longer-term consequences come out, and we're going to need to study those as vigorously as we did the acute symptoms. Catalog them, understand them and then do clinical trials to figure out how best to treat them," says Dr. Poland.

 

[Rufous McKinney]

I was hoping doctors would begin to listen to the ME/CFS community if COVID long-haulers accounted for their symptoms being similar to ours. But as you've kindly pointed out the data will start speaking for itself!

If the right questions get asked, we might be lead to some helpful answers. But- the CFS ship is relaunching and we need a strategy- we NEED TO GET THIS term dead and gone for good.

How about: we bombard local newspapers with Opinion Letters that simply point out- then basic facts like I just listed above??????????

Maybe everyone is so bored-maybe NOW we can get more exposure..

 

[Diwi9]

However, as to the scientific question of whether or not long-haul COVID is ME/CFS, it's interesting that ME/CFS has around a 4 to 1 female to male ratio, and according to a survey conducted, long-haul COVID has a similar ratio, at 4.5 to 1. So that's one thing they have in common.

I've been so curious about that. Thanks for sharing!

 

[Rufous McKinney]

I've been so curious about that. Thanks for sharing!

The data reported here: indicate Men were suffering worse outcomes....this is from April, Asian data.

https://www.frontiersin.org/articles/10.3389/fpubh.2020.00152/full

• This is the first preliminary study investigating the role of gender in morbidity and mortality in patients with Novel Coronavirus Disease (COVID-19).

• Men are more at risk for worse outcomes and death, independent of age, with COVID-19.

• While males and females have the same prevalence of COVID-19, male patients have a higher mortality.

 

[Abrin]

About two days ago on LBC radio, a member of the Long-COVID SOS campaign was sharing her experience and explicitly and repeatedly stated Long-COVID should not be considered the same as ME/CFS.

Wow, how nice of the Long-COVID people to throw the ME/CFS people under the bus just like everyone else.

 

[junkcrap50]

Seems like this was an important detail in the article that was missed!

Democratic Rep. Jamie Raskin of Maryland is co-sponsoring a bill, HR 7057, the "Understanding Covid-19 Subsets and ME/CFS Act." The proposed legislation calls for $60 million in federal funding, or $15 million annually through 2024, for projects including data collection, collaborative research centers and a medical research program to be executed by the National Institutes of Health and the US Department of Veterans Affairs.

One of the groups that would likely vie for additional federal resources is the Open Medicine Foundation, a collaborative of scientists focusing on ME/CFS research with centers at Stanford University and Harvard University.

$15 million / year. Not a lot, but previously had been only funding at $5 million / year.

 

[livinglighter]

If the right questions get asked, we might be lead to some helpful answers. But- the CFS ship is relaunching and we need a strategy- we NEED TO GET THIS term dead and gone for good.

How about: we bombard local newspapers with Opinion Letters that simply point out- then basic facts like I just listed above??????????

Maybe everyone is so bored-maybe NOW we can get more exposure..

I think it’s a good idea to go to press with our stories.
I do think timing should be considered though.
It could be better to let meaningful evidence build up. The prevalent use of inappropriate testing has led to the illness being termed as medically unexplained which is how some get away with saying it’s all in the head. Now there seems to be a big rush to implement appropriate testing it may also prove helpful for us. I’m just thinking the more evidence there is to dismantle the badly concocted theories the better. However, I’m also aware of the long awaited review of the ME/CFS NICE guidelines here in the UK which could do with some media attention. Regrettably, I’m a former patient of one of those so called ‘fatigue clinics’ which I’m assuming they collect the patient data to inform the guidelines. I’ve been cautious to speak about my experience here, as I’m not yet sure if I have a legal matter on my hands. I wouldn’t be surprised though if the guidelines don’t change based on the issue of intentional patient data tampering at the clinics. The PACE ring seems to be very active in what they do.

 

[heapsreal]

I wonder how many are being told to exercise?

 

[livinglighter]

Wow, how nice of the Long-COVID people to throw the ME/CFS people under the bus just like everyone else.

I was thinking that at the time, and I’m sure she was advised to avoid being pigeonholed with ME/CFS so they get access to proper medical help. Now I’m thinking it is better for it to be viewed like that in the public domain, so it doesn’t prevent them from accessing credible medical help that’ll prove useful to us if it’s the same/similar disease.