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

I think 'strongly suspected' is ok. It's very difficult to be certain with anything related to ME, and self-reports from anyone can be less than completely reliable. They didn't say they were an expert in ME so I can see why they'd want to avoid making definitive statements.

Also, the headline (designed to attract clicks) said 'expert studying the condition' rather than 'expert in the condition', so I wouldn't be too critical of that either. Not read the article though, so maybe it's terrible.

 

@Esther12

Why mention ME at all? It just continues to recycle ME into the 'mysterious' and 'unknown' pit again. It's annoying more than anything.

 

Is there evidence to support the "2.5% incidence"? It might be useful in lobbying @Michiel Tack

 

But other people complain when ME is not mentioned in articles about Long Covid and the similarities are ignored.

I think of ME as really poorly understood so that doesn't annoy me.

 

I think I met this lady at the DecodeME meeting. If it is her, as I think it is, she is an expert. Slightly dry in manner but highly intelligent and potentially of importance to PWME. She is into genetics and also fibromyalgia. Very biomedical. I reckon she is an expert studying the condition.

 

When ME was defined it was well understood that it was a symptom set that occurred after many epidemics in different times and places. People who had it recognised it in each other especially in the way it was so dependent on exertion.

A lot of the confusion came in because the emphasis was changed to fatigue as the common symptom but that has many varying causes.

Post epidemic ME may be a particular subset of a wider disease but that is something else.

Post infectious ME was only poorly understood in that the root cause was not worked out which it shares with many other well accepted diseases like migraine.

 

https://twitter.com/user/status/1336392022886846468

 

No, that was just an example.

 

A truly astonishing lack of ME on that two-day programme.

 

https://twitter.com/user/status/1336688183367626760

 

Whatever happened to all that "reaching out" that there was going to be. I suppose in these politically correct times one must be cautious about such things.

EDIT typo

 

Confronting the pathophysiology of long covid [opinion piece in the BMJ]
https://blogs.bmj.com/bmj/2020/12/09/confronting-the-pathophysiology-of-long-covid/

 

Not any more encouraging for us than it is for them. After all this time, still totally clueless. Months are being wasted even as I am seeing an increase in people developing severe symptoms and becoming evermore desperate from the impact.

What an immense failure. It will come together with time but to waste this much time avoiding the freaking obvious really does not look good for a profession that is expected to follow the evidence and just flat out refuses to.

 

Honestly I'm seeing an increasing boredom over the topic from medical professionals who aren't affected. The focus is switching to organ damage, the rest looking more and more like ME is getting about the same level of interest: it can't be measured to it doesn't exist.

Lots of people will be found to have organ damage. It will likely not be correlated with symptoms, so the symptoms will be ignored. Almost zero interest on neurological symptoms overall, they are barely recognized.

Looking too much like ME is basically putting off people from the whole thing, even when they can't even admit it to themselves. This too shall pass but it really looks like we can't avoid maximum stupid until then.

 

Rehab centres, research clinics crop up across Canada to manage COVID long-haulers

https://www.stratfordbeaconherald.c...ers/wcm/3a3969eb-fb81-4df6-ad47-da447895c45d/

The complete lack of any learning from experience is becoming seriously discouraging. I don't doubt people will get around to their mental block here but to have seemingly learned nothing yet at this stage is not acceptable. Enough of that "it's brand new" crap. It isn't, you are failing completely here. Again.

The LC patient community already had far greater awareness of the basics in the first few weeks of this. I am not kidding here. Medicine still hasn't produced anything as good as the first Body Politic report, has not learned anything that wasn't readily obvious to so many even before it all began to unfold.

 

Was there really no one available with actual experience on ME and no long track record of being on the very wrong side of the issue? Disappointing. Greenhalgh has zero credibility on ME and has displayed nothing but indifference to it in regards to LC.

https://twitter.com/user/status/1336750402805481472

 

If nothing else, COVID-19 represents a unique opportunity to study post-infectious autonomic syndromes, research which will hopefully lead to greater understanding of the pathogenic mechanisms of POTS.

 

https://twitter.com/user/status/1336829763411877891

https://twitter.com/user/status/1336951869906636800

 

Other than the names used, this may as well have been an article on ME. It's getting annoying to see people describe the thing accurately without being aware of what they are describing. But at least word is coming from respected institutions that recovery cannot be pushed and the acknowledgement that it can happen to anyone. One angstrom-length step for man...


Mayo Clinic doctor studying Covid ‘long haulers’ says it might take them a year or more to recover

https://www.cnbc.com/2020/12/09/cov...-year-to-recover-says-mayo-clinic-doctor.html

There's a video report that mostly says the same thing as the article. Not bad, just annoying to see actually accurate descriptions of ME from people who are oblivious that they are describing me. Mayo is still generally atrocious for chronic illness and ME specifically.

 

CNN: Covid-19's effects include seizures and movement disorders -- even in some moderate cases, study finds - by Ryan Prior

Covid-19 can lead to neurological complications, including strokes, seizures and movement disorders, researchers have found.

The complications, which go well beyond cognitive impairment, can occur even in moderate cases, according to a study published Wednesday in the journal Neurology: Clinical Practice.

"These particular complications of Covid, and neurological disorders more generally, are about your ability to interact meaningfully with the world," said lead study author Dr. Pria Anand, an assistant professor of neurology at Boston University School of Medicine. "I think that's one of the unique and devastating things about this (virus)."