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

Thanks @John Mac I appreciate it - and I really try to have hope about the research, although things can seem fairly grim!
I don't want false hope, and I am not sure what is realistic. I really appreciate this forum. <3

 

Opinion piece by three ME doctors/researchers from the Gottfries ME/FM clinic in Sweden (which sadly closed down last year).

Använd ME-forskning för att behandla långtidssjuka i covid
https://www.gp.se/debatt/använd-me-forskning-för-att-behandla-långtidssjuka-i-covid-1.41989524

Google Translate, English

 

Decent article, although the words neuropsychiatry and rehab medicine trigger a visceral response in me. The authors have all been involved in biomedical research for ME, however. I hadn't heard of Gottfries and his weird origin story until now. The article is a bit on the nose about the fact that they were all involved in B12 research, though.

I do not understand why it constantly needs to be reiterated that ME and LC are not identical. Most pwME wouldn't even have the temerity to state that two cases of ME are identical. ME is a clinical entity based on symptomology, the diagnosis of which does not allow inferring any underlying pathology. Any stronger claim than that is overreaching it, and the authors should understand best how little actionable insights these "decades of careful research" have actually wrought. Personally, I'd sketch out when the natural recovery from LC approaches asymptote, and diagnose ME then, but eh, at this point we're just about sidelined at any rate.

 

(Off topic!) There's a long story behind that, actually. B12 was used as a kind of weapon against the Gottfries Clinic, which probably played a big part in them having to close down. Gottfries and others at the clinic had been involved in ME reseach for more than 20 years, so it was an immense loss for the ME community in Sweden. The clinic had a biomedical approach.

In short: three public healthcare physicians filed an official complaint to IVO, The Health and Social Care Inspectorate, sometime before March 2015, objecting to Gottfries offering ME patients B12 injections as a part of their treatment, arguing that it's not evidence based. They also objected to the part of the contract with the regional council that states that after initial investigation, diagnosis and treatment at the Gottfries clinic, patients are to be sent back to the primary healthcare centers who from then on will be responsible for continuing their care, treatments (including B12), writing the necessary papers for sickness benefit/compensation, insurance purposes etc.

The use of B12 was misrepresented in the media, one thing led to another, and the regional council stopped funding the clinic in 2017 which led to the clinic having to close down. The regional council gave the contract to a clinic with a BPS/MUS approach instead

More info here, for those who are interested.

 

Oh God, that's awful. I do find it telling that it's always physicians who file these sorts of complaints, and never the patients themselves. That said, an ubiquitous supplement was never going to be the key to curing ME, and it's a shame that things went downhill over a treatment that will be futile in most cases.
Thanks for providing the background to this topic, though.

 

Inside 'post-Covid' clinics: How specialized centers are trying to treat long-haulers

https://www.nbcnews.com/health/heal...specialized-centers-are-trying-treat-n1258879


In case anyone is still somewhat envious of the attention long haulers are getting, don't:

Makes total sense to combine an exercise program with strategies to use less energy while vacuuming, a very low exertion chore. No contradiction here. Much common sense. Penny-wise pound-foolish taking an interesting twist here.

"Taking cues" apparently means making all the same mistakes and never budging away from a failed approach.

And when you definitely understand the concepts such as brain fog:

It's been a year and everyone is still stuck behind the starting line. What a dysfunctional mess. The whole first year utterly wasted on fools' errands. Leading to this, most of which could have been avoided had people worked smart instead of hard:

 

Are those right words "I have fully recovered, I have fully recovered, I have.........."

 

First they will be put through the 'medical lie detector test', and then handed a yoga mat for 'recovery' therapy.

 

A Conversation about Myalgic Encephalomyelitis with Dr. Nina Muirhead Webnar March 9, 2021:

https://twitter.com/user/status/1366448821719326722

 

Video

Copy and paste to go to video

Code:

https://www.theguardian.com/society/video/2021/mar/01/voices-of-long-covid-we-are-the-people-that-never-recovered-video

 

Cant fully access, but looks interesting:

https://www.thetimes.co.uk/article/...covids-dementia-symptoms-in-germany-d9sjg8r5d

 

Frances Ryan commented on Twitter

 

Yep - 'Odd' - that's the word that comes to mind.

(I did have other comments but I suspect they may be seen as in 'poor taste'.)

 

It's good, except complete naive that it is a common problem, certainly no need to go back a full century to look for examples, which says a lot. Medicine has completely dismissed and trivialized brain fog, psychologizing it as usual, and now some of the very people who would gaslight it have had their lives ruined by it.

These doctors are so unaware that brain fog is a thing that already exists that they have to dig back a full century to find examples that make sense to them. Amazing.

Yet another article that describes us yet does not name it. Ironic that in speaking about neglected patients, it completely neglects the millions of us already living with this.

Bears repeating that generic psychometric questionnaires of no specificity are entirely useless. Because some people are really slow at understanding it while others are too committed to ignoring reality to care.

 

I think Dr Frommhold is the one from the documentary I've posted before. I'm sure depending on the underlying problem lots of people do benefit from physical therapies. It's crucial to filter out the ones with real PEM/PENE right away though to not make them worse.

Prof. Scheibenbogen from the Charité has been very outspoken about a possible LC - ME overlap so any doctor who takes LC seriously as a physical problem must know about ME.

 

Medically Clear
Long-Haul COVID: A Contested Illness is Born
Ballard, Dustin MD

Sees Long Covid as a problem for doctors

https://journals.lww.com/em-news/Fu....aspx?context=FeaturedArticles&collectionId=3

 

Walter Koroshetz links to a short news segment by NBCNews from yesterday interviewing Francis Collins and Avindra Nath on research on Long Covid. Collins promise no stone will be left unturned. ME is not mentioned.

 

I read this more as "we will make problems for those patients" from someone who intends to make problems to those patients. None of this is serious, reality is too abstract to these people, they are moving pieces on a board without any understanding that those represent lives like their own.

Though in a nutshell this shows how "contested illnesses" come about, how it's completely arbitrary and can be summed up as: "I contest and will fight these people until they give up".

 

Brilliant opinion piece, well worth a read Please click through to the article to increase its traffic/stats!

De som har långtidscovid kan inte viftas bort lika lätt som de ME-sjuka
https://www.altinget.se/artikel/kro...an-inte-viftas-bort-lika-latt-som-de-me-sjuka

Google Translate, English

ETA: Please do "like" and retweet/share:
https://twitter.com/user/status/1366989463541415936


ETA: Link to Altinget's Facebook post:

Code:

https://www.facebook.com/1498384680401285/posts/2884205678485838/