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

I agree, but it's probably inevitable. If people are trying to discuss a phenomenon that isn't easy to describe succinctly and then stumble across a word or phrase that really seems to nail it, they'll naturally tend to find themselves using it.

What irritates me isn't so much the adoption of useful terms, but the lack of acknowledgement of the source.

 

I agree. Was trying to think how to say it but you nailed it Trish.

 

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!