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

Page 27 today's TIMES print edition.

Online (reg required):

https://thetimes.co.uk/article/covid-is-not-the-only-killer-i-should-know-v3kd7s05x

Covid is not the only killer — I should know

Let the vulnerable shield and the rest go free before missed cancers (as mine might have been) and lost jobs ruin more lives

Libby Purves, Monday October 19 2020

Where to start?


https://twitter.com/user/status/1318180701045465088

 

He replied. Not convincingly. No idea where that number comes from, it's probably based on idiopathic chronic fatigue.

https://twitter.com/user/status/1318251009488158720

 

Response: https://www.bmj.com/content/371/bmj.m3981/rr-0

Unfortunately not all do agree as otherwise their career will be over and there will be many legal repercussions. This is not a done deal. people will have to push for this, until then it will stand in the way.

 

Also

https://twitter.com/user/status/1317785397309603841

 

Honestly this comes across as someone who wants to do better but is hindered by the mass of confusion brought by BPS fanatics, who tend to adopt a language that leaves no room for the fact that they are perfect and we are wrong. They don't show any contrition and he seems sincere in that.

But this definition of ME and CFS is just plain wrong, roughly the idea espoused by Lloyd of a spectrum of fatigue and ignores all other symptoms. There is a spectrum but not on those definitions. Ugh. I doubt he would be as confused had it not been for the domination of the CBT/GET paradigm. Without a test, it's all so difficult to really know.

Maybe he can be nudged the right way by fellow professionals? We need a bat-signal for @PhysiosforME, you must be so busy these days!

 

Some patients think something like this.
Also with strict criteria for ME, such as used in the International Consensus Primer, I think it's going to largely pick up people who are more severely affected on average.

 

Interesting discussion over "rehabilitation" from Long Covid. Not entirely sure what "post-viral routine" means (it's later specified as standard care, which is nothing so...?) but the responses are encouraging in seeing the message getting through not to force patients to push through. It seems to suggest that rehabilitation is not a strategy for PVFS, which is actual significant progress.

If there's a critical mass of physical therapists who simply refuse to do GET when referred to by a GP, this is one good way to get the message across general practice that it's simply wrong. I'm not so convinced about how it can effectively be managed without medical recognition, sick notes and disability, however.

Discussion just started so there should be more replies over time but already many responses. You're rocking this, @PhysiosforME!

https://twitter.com/user/status/1318271328395382785

 

thank you - we tried to get the message out there! A few others were name checking us as well so fingers crossed making some progress

 

I love this!

 

https://twitter.com/user/status/1318538491588988929

 

https://twitter.com/user/status/1318531434336952326

 

https://www.cosmopolitan.com/uk/body/health/a34412641/long-covid/

https://twitter.com/user/status/1318580146740301829

 

(Probably paywalled. I was only able to read the whole article from the Twitter link, will post the tweet below.)


These Doctors Have Long-Term Covid. Now They’re Pushing for Better Care.

https://www.wsj.com/articles/these-...-pushing-for-better-care-11603144474?mod=e2tw

Funny story about that: primary care does the same. Predictably, outcomes are extremely bad. To be fair, who knew that abandoning sick people could be bad? Besides the very massive evidence from decades of this being common practice, of course.

Still waiting for exertion intolerance, or any other valid frame of, to be recognized...

Usually "a taste of one's own medicine" is not meant to be literal. But, yes, medical gaslighting is absolutely horrible and incompatible with the Hippocratic oath. It needs to end. The entire practice of "psychosomatic medicine" has no place in modern medicine, it is an anachronistic aberration from before modern science, modern medical practice and the germ theory of disease. Enough. Let's move on and give post-infectious illness the serious attention it needs: AIDS-level funding until there are tangible results. Now. Not next year. NOW.

(Don't read the comments)

https://twitter.com/user/status/1318454425791434752

 

Trump Said Don’t Let COVID Dominate Your Life. These Millennials Don’t Know If They Will Ever Get Better.

https://www.buzzfeednews.com/articl...covid-dominate-your-life-long-haulers-respond

Doesn't add much to what we already know but from 100 interviews these give a good overview of the Long Covid experience.

 

Trial by Error by David Tuller: Some Thoughts on Long-Covid, ME/CFS and MUS

Both MUS and ME/CFS are likely to become prominent points of discussion and contention as the number of long-Covid cases rises. Many specialists will want to grab slices of the long-Covid pie–whether or not it is warranted by the science. More and more journalists will likely be covering these issues–sometimes responsibly, sometimes not. This could all end up being a mess, although research arising out of long-Covid might very well shed light on mechanisms behind ME/CFS and MUS as well.

 

Some of that from @dave30th seems too strong to me, eg:

While I don't think it's good to use 'delusional' there, that also just doesn't sound right to me. Where was that hypothesis for PACE laid out? I can't think of a quote from PACE that is so strong.

 

MSNBC had 2 COVID-19 clips segments of interest tonight. one pertained to the UK clinical trial opabout inoculating 90 young adults (18-30) with COVID and trialling vaccines and treatments on them. The trial is set to start in January but seemingly there are ethical concerns now, since there are no approved treatments for COVID and there is a risk of death.

The second segment pertained to Long-COVID and here is the recording:

https://www.youtube.com/watch?v=qy2u-0IvmeY

 

I hope they are well compensated, because...

 

Is there an element of bait-and-switch here? While I accept that there is a greater percentage of women and girls who do suffer from ME/CFS-like illnesses, and that that is plausibly explained by there being an auto-immune component to them, the specific mechanism is, obviously, not clear and the numbers are also far from clear. Yet in this report, after not giving the breakdown by sex from the stats they were working from, Cosmopolitan then blithely presents four women as a represntative sample. Sure, it's a women's mag and they also select attractive, young women, but it is almost the norm in media reports to interview women rather than men. No doubt there is a strong element of self-selection there, men being more wary of what publicity might do to their lives, and the Long CoVID phenomenon has thrown up a number of interesting exceptions to this rule; but does it also apply to the raw stats?

That app survey is a very good opportunity to get a dataset that might be less affected by the problem of self-selection that biases even surveys. Here in Queensland, I am quite sure that plenty of men have removed themselves from showing up in what ME/CFS statistics that there are by simply killing themselves. And plenty more evade the statistics in other ways. And even that app survey would have its own problems but it should be worth following. Meanwhile, I suggest that cultivating a greater awareness of ME/CFS being given a feminine face is still necessary to avoid the old pitfall of being dismissed as merely a bunch of hysterical women. That sexism hasn't gone away. On both sides.