News about Long Covid including its relationship to ME/CFS 2020 to 2021

Merged thread
https://mylongcoviddiaries.medium.c...-for-long-covid-and-its-shocking-82ddcb214656

This is a personal blog about one patient finding the probable cause of her long-Covid symptoms (blood clots in lungs and fluid around heart). It's interesting because the patient reports post-exertional malaise, and the patient had numerous advanced tests that didn't pick up the issues.

I suspect these sorts of findings will be found in many long-Covid patients, who similarly might report 'post-exertional malaise'. My feeling is this presentation has little to do with ME/CFS, and that the 'post-exertional malaise' is not ME/CFS PEM. I also think this patient is likely to make a good recovery with treatment.

 

yes, I think PEM is being used to mean exhausted after exercise which is not the way it is used in ME. The tide is against us so maybe it is time to try to establish a term for what happens to us. PENE may not be a good description but at least everyone would not read it as something it is not.

We already have enough problems with people reading about Chronic Fatigue Syndrome and thinking they are chronically fatigued too but still have to get up to go to work every morning.

 

The term post exertional malaise is being used a lot in the media. Recently, I've read several times that 'PEM is a medical term used to describe pwCOVID'.

 

Yep, it's definitely now being used to describe an acute reaction to exercise (the type you'd expect with cardiovascular impairment).

 

How 'nice'.

About as far from accurate as it's possible to get in so few words.

'The large hadron collider is made out of bananas' would rate right up there with it in the 'accuracy' stakes.

 

It's interesting that PEM is now being described as a 'medical term', but when pwME have been describing this for decades, it was considered deconditioning.

 

It varies between people but generally what I've seen in LC forums is the same thing we mean. It definitely does not mean post-exercise fatigue the way the BPS fanatics use, that I can confirm. It's the increase of symptoms and general malaise. Not always with crushing exhaustion but generally speaking it means the same thing we do, accounting for how varied the symptoms themselves are between people.

 

Didn't NICe describe it as Post Exertional Symptom Exacerbation?

 

My feeling is that this sort of Blog, much like Paul Garner's, does not help the already considerable confusion around symptoms after Covid. The account is pretty difficult to interpret from a medical point of view. I am not clear that anything has really been found that would account for symptoms. if there has been clotting then it is unlikely that any sort of treatment would be relevant a year later.

I cannot see any particular reason why this person should not have PEM - either as part of a resolving post-viral illness or indeed ME. The shortness of breath suggests some lung damage may be but you have to have quite a lot of lung damage for shortness of breath to be disabling a year on. And mental exertion does not produce worsening of symptoms if the problem is lung damage.

Again, I think it demonstrates that we need our evidence to be carefully gathered and controlled. Otherwise all sorts of stories will propagate.

 

The ME/CFS community tends to be too quick to assume that someone didn't have ME/CFS because some other medical problem was found.

There is no reason to believe that someone cannot have ME/CFS and other health problems. It actually seems to be the norm. The concept of CFS as exclusionary diagnosis that cannot coexist with other fatiguing illnesses was meant for research purposes, not clinical use.

It's also possible that PEM is not unique to ME/CFS but found in some other illnesses as well. The kind of systematic research that would be needed to know whether this is the case has not been done.

 

Article in Danish TV2 tonight about a theory behind long covid. It has reached Norwegian media with the head line "Danish doctors believe they have found the answer to "long Covid"..

quote:

First and foremost, the lack of energy formation and the consequent late effects can be due to the fact that the energy factories in the body are put out of function, explains Lars Østergaard.

But according to the chief doctor, it can also be a consequence of the blood not getting out to the cells in the body because there are small blood clots in the vessels.

And finally, he believes that the immune system may have destroyed the ability to generate energy from the oxygen in the blood.


Original: Nu kan læger have fundet svaret på, hvorfor coronapatienter drænes for energi
google translation: Now doctors may have found the answer to why corona patients are drained of energy

ETA: added link to google translation

 

So basically they got nuffin...no clue, no fresh ideas.

 

The article continues with the researcher calling it a mystery with many unresolved issues. A completely new disease, like a medical UFO.
Then it goes on with:

Lars Østergaard says that it is incredibly important to recognize that patients are ill and have a health challenge.

- Next, you can start doing some rehabilitation, and then it could be nice to get some treatments that can remove the condition, he says.

 

'Like' for the info, not so much for the content of that info.

It is nice to know that a presumed doctor would like to find treatments to 'remove the condition'.

I hope by that he means a cure, or at least a treatment, as that sounds like he has a much more ominous intent (it may be just a translational thing but such a way of speaking is reminiscent of 'things' that happened, a while ago).

But rehabilitation before treatment, again, is 'disappointing'.

 

Well, at least it's something that their hypotheses happen to be the exact same hypotheses that have been around ME research for the last several decades. I don't what that something is but it's something. They're also pretty self-evident, to be honest. Which may be the most important something: how the hell did medicine sleep on the self-evident for so long?

It's endlessly frustrating seeing medicine flail and fail around this issue. How that profession gets anything done is frankly a mystery to me. But it's all about the feedback mechanism. The feedback on death is usually quick and unambiguous. Without death, though, yiiiiish. Actually: yiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiiish.

 

Merged thread
Not sure what thread to put this in - it's a young guy who was initially diagnosed with ME/CFS, then 'corrected' to long-COVID.

Long Covid: 'It's like someone has piled sandbags on top of me' - BBC News

Reece caught coronavirus during the first wave of the pandemic in March 2020, but like many twenty-somethings, he wasn't hospitalised overnight.

What he thought would be a mild illness became a protracted nightmare with his partner Alice becoming his carer.

Months after his initial infection, he was diagnosed with CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) by his GP and referred to a specialist. His CFS/ME consultant later confirmed his CFS/ME symptoms were a form of 'long Covid' and referred him to a long Covid clinic.

 

https://bmcinfectdis.biomedcentral.com/articles/10.1186/s12879-020-05716-x

• P

 

https://www.dovepress.com/prevalenc...ovid-care-facility-peer-reviewed-article-IJGM

 

https://www.bbc.com/news/av/health-56571663

Code:

5-minute BBC video where a young man & his partner describe his life following developing ME/CFS following Covid (i.e. a form of #LongCovid)

https://twitter.com/TomKindlon/status/1376921317673426947?s=20

 

It is always possible to have ME as well as another illness; sheer numbers mean that there is someone with almost every disease as well as ME. The problem is if another disease accounts for all the fatiguing symptoms there is no need to assume ME as well.

There is a slight creep to saying that people with MS have CFS as well when what is meant is that they have a chronic fatigue as part of their disease. It is a consequence of the MS and there is no need to add ME to the diagnosis - used because that is the preferred patient term not because there are any of the specific things that make up ME.

It is becoming common for fibromyalgia to mean pain and ME/CFS to mean fatigue which does us all a disservice.