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

One thing I wonder about is the accuray of physical activity epidemiology.

I guess even most doctors who are not too biased towards pwME will believe in numbers that are repeatedly published about the allegedly common physical inactivity of the population in general.

But perhaps it's a real problem?

Fom the wikpedia page on physical activity epidemiology:

 

https://www.theguardian.com/society...rus-months-nhs-clinics?CMP=Share_iOSApp_Other

It does feel more and more like watching history repeat itself with the LC classification issue now being discussed as an umbrella term, and I've got mixed feelings about appropriation of our vocabulary and metaphors after watching Dr Strain's apparent disregard for ME/CFS on BBC News 24! In his possible defence he did look a bit like he was caught in the glare of a live news programme, but as others have said a clarification is warranted.

 

See the quoted tweet in this post, https://www.s4me.info/threads/possi...ovid-19-long-covid.14074/page-178#post-325876, for his clarification.

 

I am getting very annoyed with it, particularly when they don't mention that these are terms/metaphors that have been used by ME/CFS patients for decades, or if they do mention ME/CFS say that Long-Covid is 'not the same'; so why use the same terminology(?) argh.

 

Yes, it is appropriation.

 

This comment to the article from Frances Ryan has received 1 000 likes so far

 

Measuring disability experienced by adults living with HIV: assessing construct validity of the HIV Disability Questionnaire using confirmatory factor analysis
https://bmjopen.bmj.com/content/4/8/e005456
https://www.sci-hub.ee/10.1136/bmjopen-2014-005456

 

There's some discussion of the current treatment of "long COVID" in one of the latest videos in the Royal Society of Medicine's COVID-19 series:

The discussion turns from the treatment of acute COVID to long COVID in the 31st minute. Dr Glynne (general medicine, UCL) discusses some of the clinical presentations he's seen - he appears to be an "MCAS" believer - his empiric use of H[1] and H[2] blockers, and (unpublished preliminary) results - one relating to an abnormal T-cell phenotype and another pertaining to mast cell precursors in peripheral blood.

No explicit mention of ME/CFS, but he mentions how "for a long time, the medical profession hasn't been that interested in post-viral syndromes" but that now "a number of colleagues have actually had this disease themselves" and have been unable to work because of it, interest is growing.

 

The document is a sensitivity analysis but if you go to page 24 they reveal the questions on the questionnaire:

https://tspace.library.utoronto.ca/bitstream/1807/72921/1/Sensibility Assessment of the HIV Disability Questionnaire.pdf

ETA: I see @Sly Saint got there first.

 

On this point, this quote from the article was particularly galling:

I described my illness as feeling like "the worst flu of your life combined with a nasty hangover or being poisoned" to a specialist over 20 years ago.

He just laughed at me.

 

She describes exactly what my dear friend w ME felt for 18 years.

 

This morning on Radio Canada I heard that a clinic has been set up for Long Covid patients in a town called Sherbrooke, which is about 100 miles outside of Montreal in a very attractive rural area. They will be testing these patients in order to try and determine what is wrong with them. The doctor who announced this said there may be more than one such clinic being set up. There was no mention of ME/CFS. It was an interview actually, not a news announcement.

This is positive and I hope they come up with some answers, but all the poor ME patients in Montreal are languishing in their beds, unattended.

 

They, the IRCM are also conducting a study for the long term effects of COVID.

 

Thanks Mij for the details; the clinic in Sherbrooke will have the patients stay there like in a hospital and conduct their testing that way.

 

It is very disheartening. ME patients have been invisible for decades, and now the Long Covid community is appropriating itself the terms that we have created and that we use. That includes their testimonies in the media, who believe them and spread their stories while ME is barely even mentioned or is cast aside as "chronic fatigue".

Rubbing salt in the wound and it's not going to stop soon.

 

Given that initial LC studies show a pretty even prevalence between men and women, I’m wondering if this is initially true of most other PVFSs and that more men recover over time revealing the 75% women 25% men ME prevalence of those who don’t recover.

 

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.