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

I agree. I’m not against the appropriation at all, I would only like that people with ME be acknowledged when these terms are used. On the other hand, it is likely that some people with Long Covid have heard about them second hand, so, setting aside the stigma of ME/CFS, I understand that the connection isn’t generally being made.

How the consequences of the historical framing of ME as chronic fatigue keep unfolding, this time separating LC from ME because the latter is not perceived as a multi systemic disease, is baffling.

 

This questionnaire actually looks useful and competent, including for ME.

Thread:

https://twitter.com/user/status/1363585050164551680


And this one also:

https://twitter.com/user/status/1363585112756150273


This kind of questionnaire was discussed a few times prior. Here as an example: https://www.s4me.info/threads/does-...tch-your-mecfs-level.16467/page-2#post-283092, discussion started about the SF-36 and how to make a better questionnaire.

Actually pertinent and competent questionnaires relevant to the reality of this illness and ask about symptoms >>>>...∞...>>>>>> generic BPS psychometric questionnaires of no relevance to the actual lived reality with zero concern for symptoms.

 

It makes me sick to my stomach (figuratively). Seeing for example that Strain BBC interview where he’s saying the LC to ME distinction can be described by old battery analogy in LC and his blatant ignorance and arrogance (for not bothering to spend the effort to read up on ME/CFS or talk to ME clinicians enough to know anything about it) makes me feel so disappointed in the medical profession. ME has been using the old battery analogy since forever.

I see now that Strain understood the LC ME similarities better after S4ME members and others had a conversation with him on Twitter. But unfortunately so many people who watched that BBC piece will not see that he changed his mind and they will go on believing LC and ME are very distinct and that pwME don’t have the same old/broken battery feeling everyday.

 

Not sure if this has been posted but this happened today:

https://twitter.com/user/status/1362946265592385538

 

I posted this on the thread "A nanoelectronics blood-based diagnostic marker for ME/CFS ....." as it clarifies a point we've been discussing but it belongs on this thread too.

It's a panel discussion with Ron Davis, Ami Mac & Michael Snyder titled "The Crisis: Post Covid Symptoms with Stanford University" that looks at many aspects of Long Covid & ME/CFS. Focus is ME research.

https://www.youtube.com/watch?v=2d_rR-3fyhk

 

I sent Edwards testimony to NICE to the Birmingham LongCovid research group.


Thanks very much Dr Beatty. My colleagues and I will review this document.



Kind regards,

Shamil

 

COVID-19: B.C. doctors seek to understand crushing fatigue months after recovery

https://vancouversun.com/health/loc...rstand-crushing-fatigue-months-after-recovery

 

'Don't suffer in silence': Wigan long Covid sufferer urges people to get help
“It’s like hitting a brick wall and I’m always tired and breathless.”

My bolding
https://www.wigantoday.net/news/peo...vid-sufferer-urges-people-to-get-help-3142115

 

Glad to know that

 

No, it can't.

Before 6 months it isn't (ME) by definition, so if it's only months then it ain't ME.

I'm fairly sure that more than six months would qualify as 'many months'

 

Sweden currently doesn't have any compiled data on how many people are affected by long covid, and won't be able to get it unless data privacy regulations are changed.

A spokesperson for the Swedish association for doctors with long covid says their current estimation is that there are more than 100 000 long covid patients in Sweden.

https://tt.omni.se/oklart-hur-manga-som-har-langtidscovid/a/yROode
https://sverigesradio.se/artikel/sv...en-att-utreda-hur-manga-som-har-langtidscovid

 

Thanks, I've got the HDQ now. I did start filling in the form, but it asked about what my study would be, how it would be administered, etc, and I didn't want to claim I'm from NICE or conducting a study when I'm not. So thanks to those who found it.

 

https://twitter.com/user/status/1364139242952273923

 

Hi guys,


i am looking for a quick reference as i am writing a letter to editor.

Would anybody know which paper states Long Covid rate was determined to be 30%?

 

This recent letter in JAMA stated:

Source: https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2776560

 

Thank you @Michiel Tack, that was really quick!

 

This is in German, a whole documentary on LC with different severities.

A young hockey player that never had any symptoms whatsoever & then was dianosed with Covid myocarditis in a routine checkup. He was put on hold for 2months from training (and any exertion) before being allowed to go back.

An ICU nurse that ended up in her own ICU herself with severe Covid. She had breathing problems afterwards even though her lung capacity was fine. She was put into rehabilitation where they said many patient's lungs seem ok but have problems with deep breathing. She fully recovered and went back to work.

A radiologist with a rather mild illness developed fatigue, severe cognitive issues ("struggle to do math at a 2nd grade level, only can read big headlines but not full articles") and something that sounds like PEM (getting worse after doing too much). She was in rehab with exercise. Seemed to get better and was sent home. Crashed and was diagnosed with "CFS". Her brain scans were clear.

From minute 34, there's a part about CFS with ME researcher Prof. Scheibenbogen.

I think this shows how severity of symptoms, organ damage and long term outcome dont have to correlate at all.

The producers of the docu had asked our health Minister Jens Span for an interview, he replied that there is no reliable data yet if "post covid syndrome" is a distinct entity at all.

At this point I cant help but to think this is deliberate denial to prepare for BPS framing/turn down future claims. The data about the phenomenon LC has been out for >6mnths now, our media has picked up on it.

Why is there no massive PR campaign?

 

The documentary is suprisingly watchable with automatically translated subtitles, btw, at least the first 5 minutes. So that's an option for anyone who's interested, although I doubt there is much in there that most people on here don't already know.
Really not excited over the fact that I can understand the comment section, though. I find it funny how right-wingers are suddenly deeply concerned about "the children", once their own freedoms are at stake.

 

I just finished watching a Facebook live video about long covid in children, as discussed by four Hungarian doctors, three paediatricians and one infectologist. This is the first in-depth discussion of long covid I've found here. (Sorry, it won't embed it.)



It started well (as opposed to another video I watched about a week ago, where it was supposed to be one of the main topics but they almost said nothing about it), they mentioned that we have to differentiate between long-term sequelae caused by organ dysfunction and long covid syndrome itself, which means persistent symptoms without any clear medical reason. They mentioned respiratory, heart issues and problems with the central nervous system, and named chronic fatigue syndrome (this is the only term in use here) and depression as examples and went on to talk about potential diabetes and metabolic problems.

About long covid they said this is something new, something not in the textbooks, they have to learn it now themselves. They also mentioned that children and young people are affected too, and it is independent of the initial symptom severity.

Then the infectologist started to talk about functional exhaustion, chronic fatigue syndrome, that it is a serious problem and these people need rehabilitation.

They mentioned something that I've also noticed in my group: many children with long covid have severe headaches, this seems to be a very typical symptom (but also muscoskeletal pain, gastrointestinal issues, fatigue, etc). This seems to be much more common in children than multisystem inflammatory syndrome.

Then they went on to talk about how social isolation contributes to the persistence of the symptoms, and psychosocial stressors exacerbate it.

One paediatrician was also a rheumatologist and said, it is normal to perceive stronger pain after psychological or any other stressor, this is how the body adjusts after a stressful event, and the feeling of the pain is real. Then another paediatrician said social pain exacerbates it too and they amplify each other. Just because they didn't find a medical reason for the pain, the feeling itself is real.

As for therapy, telling people they are not really ill is not a solution. They need empathy, they need to be led out of this bad cycle. Psychological guidance may be a good solution, because people (here they were talking about adults too) can't reintegrate due to their raised temperature, high pulse, etc. A combination of psychology, physiotherapy and if necessary due to organ issues, medications will help. There is a chance that the underlying problem is not enough motivation and depression. They also said they also shouldn't miss it if there is some serious medical issue going on on the other hand.

And here they accidentally cut off the live video and will upload the end at a later time.

Well, I'm not that impressed. These were quite young doctors, I was hoping for something else.