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

This was originally in the Daily Telegraph, but it was behind some sort of pay wall. It can be read for free at this link. ME-type symptoms aren't really discussed except for physical impairments and fatigue. I was a little surprised that young people weren't mentioned but perhaps there is a referral bias.

 

The BMJ - When will we be well again? By Helen Salisbury

With other illnesses I can map out the territory ahead and discuss the usual course of events I would expect to see in patients with similar conditions. Although timescales may be imprecise, we have some experience and textbooks to guide us. With covid-19 our predictions are pure guesswork, and our patients know it. In the face of a symptomatic patient with normal investigations, doctors tend to look for psychological explanations for the patient’s experience. Although fear about the future may be making symptoms harder to bear with this new illness, it’s clear that patients’ anxiety stems from the symptoms rather than being an explanation for them.

In the face of this uncertainty, we need access to dedicated respiratory clinics where patients with persistent symptoms can have further investigations if necessary and can receive the most expert advice available. Patients also need our empathy. If we feel uncomfortable ourselves about having no explanation for their symptoms, how do you think they feel?

 

Bit late for us though isn't it? Aaah, the poor post Covid patients, we feel so sorry for them. ME patients? Undeserving benefit scroungers who are psych cases. Sorry, my cynicism is coming out here.

 

Ugh, the anchoring. So much anchoring in medicine. The severe cases are mostly respiratory but especially for post-infectious illness they are second to neurological and autonomic symptoms, in many such cases there are no respiratory symptoms at all. This has been obvious for weeks by now. The "experts" are so slooooow at seeing what's going on.

There is clearly a need for respiratory rehabilitation but those already exist, pneumonia is a well-understood entity that receives the serious attention it deserves. There will be more of it but the services are ready and able to receive them, unlike post-viral symptoms.

 

https://www1.racgp.org.au/newsgp/clinical/what-are-the-long-term-health-risks-post-covid-19

 

Very pleased at the response @PhysiosforME are getting with their CSP presentation. This is advice that can make the difference for months or years of QALY, even more when they will finally become standard practice.

Just an example but many more positive comments with the hashtag used below:

https://twitter.com/user/status/1275856693822459906

 

Short interview on CNN with Paul Garner and one of the authors of the Body Politic report.

The forum is trying to embed the video but it's not working so I have to put this here:

Code:

https://www.cnn.com/videos/health/2020/06/23/coronavirus-symptoms-long-haulers-newday-vpx.cnn/video/playlists/coronavirus/

A bit short on details but this is the first high-profile media coverage I have seen so far. I think it's cut short here, though, there seems to be more.

Although Garner says there is nothing like it. Not quite. It's odd seeing the shock from the anchor about 99 days of this. I wonder how people will react to millions who have faced the same for decades only to be insulted and ostracized for it.

Copied to the Paul Garner thread

 

Thanks for this - we were really pleased about the positive feedback. It should go live soon so hopefully will reach more physios as well

 

Trudie Chalder on the case of managing those with post-COVI 19 symptoms, via KCL [transcript from youtube]:

youtube.com/watch?v=yHmBOA32-LI

 

Extreme 'long hauler" here. I've endured 10,226 days post virus. My interview with CNN Anderson Cooper:

 

Completely unmatched for the occasion. What a disaster those people are. Like a wizard scammer who has managed to dupe the village into thinking they have magical powers, and then a real threat comes along and their tiger-repelling rocks is all they have and the tiger ends up just mauling them out of annoyance.

And during. You know, during. Also after, but, you know, also during. Because this word has meaning and the meaning of words is pretty much their main purpose. It's a problem when you change the meaning of words and have to somehow use those words seriously but mean something else.

My advice to the BPS cult? Retire from public view, you will only humiliate yourselves at every occasion. Disappear out into the woods, never speak of this again. Especially: never speak of us ever again. You have only ever truly spoken for yourselves anyway, you only merely escalated stairs made of the bodies of those you destroyed.

 

The Week: Coronavirus and ME: doctors fear wave of chronic fatigue syndrome
Article quotes NHS, The Washington Post, CDC, The Atlantic and BMJ

As the UK’s daily death tolls fall and the immediate threat of Covid-19 recedes, doctors are warning that the outbreak may lead to a long-term surge in cases of a debilitating and untreatable disease.

Chronic fatigue syndrome, also known as myalgic encephalomyelitis or CFS/ME, is an “illness with a wide range of symptoms”, says the NHS. The most common symptom “is feeling extremely tired and generally unwell”, it adds.



https://twitter.com/user/status/1276191021148364801

 

(The Irish Sun)
"AT-RISK YOUTH Coronavirus in Ireland – Doc warns young people are not immune from chronic fatigue syndrome after catching Covid-19"
https://www.thesun.ie/news/5580346/coronavirus-ireland-doc-young-chronic-fatigue-syndrome/

Variously mentions "chronic fatigue syndrome", "chronic fatigue" and "post viral fatigue syndrome". I don't think it discusses other symptoms that can be part of these conditions so probably not a great article but I thought I would highlight it for the Irish audience given I'm not sure there has been that much media coverage of this angle so far here.

 

There are too many articles for me to read. This is amazing.

Pretty major news here. I don't have the details and would really love to know more, but a major neurological study of 50K COVID-19 patients has been launched. The study aims to follow them for a year and focus especially on cognitive problems. There will be many questionnaires and tests of cognitive ability, performance, problem solving, etc.

The lead researcher says he found a community of 47K where he saw the problem and this motivated him to do this study. So they are aware of what the patients are reporting. This is really good. I like how they intent to come in with no preconceptions, simply trying to figure out what are the outcomes.

It would be really important to connect with them, it would be silly to start from scratch.

https://www.youtube.com/watch?v=gr5bh71RF4g

 

That is a super interesting interview. I really like that particular interviewer as well, she always asks good questions.

The study is looking for people globally. I hope they choose really good testing strategies and refine them if necessary.

No mention of ME though and no mention of CBT as a treatment strategy though I expect that they will wait to see what they find before committing to anything.

The researcher Dr Adrian Owen seems really on the ball too.

https://www.cambridgebrainsciences.com/

 

https://www.youtube.com/watch?v=NQ0FaaJ73xc

 

https://www.newscientist.com/articl...ing-coronavirus-symptoms-can-last-for-months/

Not a great piece, bit disappointing from New Scientist. Quotes from Paul Garner's earliest BMJ article:

Might send them an email pointing out that most CFS cases have 'a cause', often EBV or similar.

 

I think he is misinterpreting the NICE guidelines. They currently state

I would guess he has taken "unexplained by other conditions" to mean not having a cause. But then he would need to have not taken on board "had a specific onset".