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

https://twitter.com/user/status/1296320127349202945

 

https://twitter.com/user/status/1296418465633509376

 

Anyone got the original research for this article? I searched but couldn't find it.

Is it this pre-print from June
doi 10.1101/2020.06.25.20137935v1
Blood parameters measured on admission as predictors of outcome for COVID-19; a prospective UK cohort study

 

The posted tweets are well worth looking at. I just hope that this new understanding from personal experience of some with long-covid translates into action sooner rather than later.

Good point about empathy. THAT is definitely one aspect of what is wrong in the consultation liaison psychiatry world where they impose their ideological interpretations onto sick people. Though they have learned over the years to finely hone their empathy pretend skills to help make their treatments 'acceptable to patients'.

Beyond the "We Told You So" moment that this is, the true big and compelling story here is exactly one of the loss of empathy for other people, putting them into a category of 'other' where they could be dismissed and abused at will because they were undeserving of belief.

I know that technically the bPs have framed it for their own benefit as believing in the patient that the patient believed they were ill. But that is a semantic game they play to make it OK for themselves. It makes giving themselves permission to do what they do seem reasonable to them.

 

Just wanted to add re my post above that it was the patients telling the psychiatrists that they had good mental health and that they were functioning fine and enjoying life right up until their illness that is at issue with the psychiatrists denying that reality of the patient and imposing their ideological views onto the patient. The patient had no agency in their eyes. The psychiatrist was in the position of always being right.

 

Dr. Fauci has some bad news for recovered coronavirus patients

https://bgr.com/2020/08/19/coronavirus-update-fauci-symptoms-long-term-patients/

Ah, yes, that should do it: wait 6 months and do nothing. If you can guarantee bad outcomes maybe you should do something about it, then?

I guess the new motto of medicine is: first, do nothing and hope it magically goes away. We are somewhere around the 100th iteration of that. Obviously a few more will still yield nothing. That's smart. We know it will hurt people but, whatever, who cares, amirite?

And these are the only people legally allowed to help, who also block others from helping us by depriving them of resources and support. Good grief, with help like that, he can guarantee it will be bad but doesn't want to do anything about it. Genius.

 

Not a very informative interview but maybe of interest if you know who she is https://twitter.com/user/status/1295984174864752641

 

The person I remember from the Nuremburg trials that discussed evil and I think IIRC lack of empathy was Hannah Arendt. I think it's her original quote 'the banality of evil'.

I'm not sure whether this all rises to that level really but it seems clear that there was a failure on their part to imagine the situation as anything outside their ideological view.

 

Don't think this has been posted?

'Long Covid' is real and patients suffer debilitating symptoms for months, experts say
Groups supporting survivors of virus warns doctors are dismissing problems or misdiagnosing long-term effects
https://www.telegraph.co.uk/news/20...patients-suffer-debilitating-symptoms-months/

 

https://twitter.com/user/status/1296718200240066560


https://twitter.com/user/status/1296156630887870466


Of possible interest, Jenny works for the Optimum Health Clinic.

 

https://twitter.com/user/status/1296467292801441792

 

"Campaign groups supporting survivors of the virus have previously warned that doctors are dismissing ongoing problems or misdiagnosing the ongoing effects of Covid-19 as chronic fatigue syndrome.

But in the first study to show a conclusive pattern, researchers at North Bristol NHS Trust found that three quarters of virus patients treated at Bristol's Southmead Hospital were still experiencing problems three months later."

Oh right - so people with CFS don't have problems 3 months later...?

 

The claim is either that they aren't experiencing fatigue (in which case, I'd expect their problems to be lung-related in patients who required ventilation - lung fibrosis for example - this will cause perception of shortness of breath, but won't cause fatigue in itself - there is no shortage of oxygen except under high levels of exertion when the lung capacity reaches it's limit - some patients might not even be fit enough to achieve this).

Or that they have a variety of symptoms other than fatigue (or lung damage that isn't 'longcovid' per-se) and they don't realise that the CFS diagnostic criteria overlaps with those same symptoms.

 

re concerns about ME Action's long covid group - the BPS lot are already clearly trying to shape patient activism around post-covid symptoms, and having ME patients involved and warning others about the potential for problems here seems like a good thing. I feel like ME Action are good at being pro-active on issues I just think it would be good to be involved with but do nothing about. I am concerned about premature promotion of CCI stuff, and I worry that any association of ME patient advocacy with quackery is going to be really harmful, but generally ME Action seem to have tried to avoid tying themselves to Brea's claims about CCI.

No patient organisation is going to be perfect, but I'd rather have ME Action reaching out to post-covid patients than just leaving them to the BPS lot and I know I've not done much to help build useful networks here. It's useful to try to get as large a group of people as possible raising shared concerns, even if within that group there are lots of differences too.

 

What an amazing guy Ed Yong is. Showing a great depth of thinking

 

Pretty good video from Gez/Run-DMC. Rather good definition and features of pacing in the second half.

Repeats the claims of NICE having warned about GET, which they haven't and even went out of their way to make sure people understand they did not, but otherwise good research.

https://www.youtube.com/watch?v=QchVvZbMTGE

 

Terrible interview with a clueless doctor who spews the usual dangerous misinformation of think happy thoughts and exercise. Fortunately many comments telling him off in the replies.

https://twitter.com/user/status/1296321259727474690