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

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Scars of Covid-19 could last for life, say doctors amid fears of damage to brain, lungs
https://www.independent.ie/world-ne...-fears-of-damage-to-brain-lungs-39307799.html
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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?
 
Kalliope said:
dedicated respiratory clinics
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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.
 
Post-viral fatigue seems to be another prominent feature after recovering from acute infection with COVID-19.

‘I’m surprised by the amount of description of the real deep fatigue that people seem to suffer and that maybe goes on for quite a long time,’ Associate Professor Vally said.

‘We know about post-viral fatigue syndromes, so we know that a virus can lead to this in certain people; however, it’s not something that’s particularly well understood.

‘We haven’t followed the virus for a long time yet so I’m not sure we can say long-term fatigue, but there seem to be people that really report of debilitating fatigue that lasts after they’ve recovered, or seem to have recovered in every other way.’
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https://www1.racgp.org.au/newsgp/clinical/what-are-the-long-term-health-risks-post-covid-19
 
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
 
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rvallee said:
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:

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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]:

why does it seem to affect some
01:41

people much more than others? well that's
01:45
a good question I mean certainly the
01:47
research would suggest that some people
01:51
may have a biological predisposition I
01:53
think it's true to say that some people
01:56
who are more prone to distress and or
02:00
fatigue that they may be more vulnerable
02:03
and they develop fatigue after an
02:05
infection we also know that the longer
02:08
people convalesce for at the onset is
02:12
associated with some delayed recovery
02:15
but the caveat up obviously to that is
02:18
that
02:18
when you're in an acute stage of illness
02:20
you do need to rest as long as you as
02:22
soon as you start to feel better that
02:24
you start engaging in activity again
02:27
thank you and building on that what are

02:30

the main recommendations on how to

02:32

manage this type of post-viral fatigue

02:34

and to help recovery? well we know from
02:39
work in other types of nasty viruses
02:42
that the important thing is to get back
02:44
to activity as soon as possible and
02:48
obviously that has to be done carefully
02:49
and for many people if they're just
02:52
given some guidance about how to be more
02:54
consistent in their activities and how
02:57
to build up gradually over a period of
03:00
time as well as developing a very
03:06
regular sleep routine that then they
03:09
will improve and get better for some
03:14
people they may actually need some
03:15
additional help from a health
03:17
professional
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youtube.com/watch?v=yHmBOA32-LI
 
Esther12 said:
Trudie Chalder on the case of managing those with post-COVI 19 symptoms, via KCL [transcript from youtube]:



youtube.com/watch?v=yHmBOA32-LI
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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 they develop fatigue after an infection
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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.



 
(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.
A Canadian neuroscientist is heading a global study to explore the lasting impacts of COVID-19 on the brain. The COVID-19 Brain Study looks to recruit 50,000 individuals who received a confirmed positive diagnosis of the virus in order to answer pressing questions about the disease’s direct and indirect effects on the brain.
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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/
 
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Londinium said:
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.
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I think he is misinterpreting the NICE guidelines. They currently state
Healthcare professionals should consider the possibility of CFS/ME if a person has:
  • fatigue with all of the following features:
    • new or had a specific onset (that is, it is not lifelong)
    • persistent and/or recurrent
    • unexplained by other conditions
    • has resulted in a substantial reduction in activity level
    • characterised by post-exertional malaise and/or fatigue (typically delayed, for example by at least 24 hours, with slow recovery over several days)
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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".
 
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