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

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rvallee said:
The "debate" and "controversy" really need to be spelled out here. It's very clearly divided: patients overwhelmingly report it is at best useless and at worse severely harmful while a group of controversial ideologues strongly disliked by the patient community have bullied this ideology despite a lack of evidence. The main issue is that no one can tell if it will make them worse. There is no logical reason why prudence over harm should be the norm with medication but dismissed as irrelevant in non-pharma interventions.
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Bit off topic, but this is the problem in a nutshell. It applies to longcovid as much as to us.
 
I don't think this has been posted?

https://www.theguardian.com/news/au...haul-why-are-some-patients-not-getting-better

The Covid long haul: why are some patients not getting better?
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When the Guardian’s Luke Harding began suffering symptoms of Covid-19 he assumed he would be laid low for a couple of weeks. Five months later he is still unwell, and he has found hundreds of people like him

How to listen to podcasts: everything you need to know

Presented by Mythili Rao with Luke Harding; produced by Sam Colbert and Axel Kacoutié; executive producers Nicole Jackson and Phil Maynard

Mon 10 Aug 2020 02.00 BST Last modified on Mon 10 Aug 2020 07.32 BST

The Guardian’s senior international correspondent, Luke Harding, was struck down with symptoms in March that were being increasingly reported throughout the country. He had a shortness of breath and chest pains, and although he was unable to get a test he was certain it was Covid-19. Five months later, he tells Mythili Rao, he is still suffering.

It’s a growing issue. Hundreds of people are forming online communities to discuss myriad long-term symptoms, from headaches and digestion issues to nerve damage and searing lung pain. Paul Garner, a professor from the Liverpool School of Tropical Medicine describes his own long-haul Covid-19 experience and how a blog post for the British Medical Journal led dozens of people to approach him. One of them was Iulia Hammond, a junior doctor still not back at work five months after first developing Covid-19 symptoms.
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Sly Saint said:
Just speculating, but I have a feeling it will be those who have had 'mild' covid who will be at greatest risk of developing ME. Those who were hospitalised will most likely have had a longer period of convalescence and were not physically able to force themselves to 'get on with normal activities' before rehab.
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I was thinking the same, but then again I rested a lot for 9 months (after viral onset) only to have a relapse within a month when returned to work. So it appears I felt well enough to return to work, but when I went back to normal activities, I relapsed and was worse the second time around. Wasn't pushing myself either.
 
Warning over conflicting medical advice to coronavirus recovery patients

Medical authorities have been accused of giving conflicting and potentially harmful advice to tens of thousands of patients struggling to recover from Covid-19.

The NHS is urging patients to “get moving again” with a regime of physical activity to build up their strength. Its tips range from marching on the spot to using an exercise bicycle on days when it is too wet to go out for a walk.

Guidance from the National Institute for Health and Care Excellence (Nice), however, warns doctors that graded exercise therapy (GET) should not be recommended for people with long-term coronavirus symptoms.

Nice, which was not consulted on the NHS advice, has told doctors it is “aware of concerns about GET” and that it should not be assumed the therapy is appropriate for post-Covid fatigue.
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https://www.thetimes.co.uk/edition/...ce-to-coronavirus-recovery-patients-d9xzwr6xl
 
What about other countries, have there been any official recommendations about what long haulers should do?

Nothing in Germany so far, but we didnt have many cases. Prof. Scheibenbogen from Charité in some interviews has warned about not pushing through post covid symptoms but that's it.
 
Leila said:
What about other countries, have there been any official recommendations about what long haulers should do?

Nothing in Germany so far, but we didnt have many cases. Prof. Scheibenbogen from Charité in some interviews has warned about not pushing through post covid symptoms but that's it.
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In France, the minister of health, a neurologist, was interviewed on national TV last night. He stated that people seemed to be mostly affected by cardiac and neurological issues (and post-viral fatigue in a previous interview) and says that researchers are looking into dysautonomia. This is consistent with the recent publication from a French group of ID specialists. https://www.clinicalmicrobiologyandinfection.com/article/S1198-743X(20)30436-5/fulltext

Physical rehab/exercise therapy is being widely prescribed, in particular for PVF, with seemingly no warning (or knowledge?) about PEM. As usual it's based on the theory of deconditioning, even though some French long-haulers have been reporting that they experience PEM after minor tasks such as household chores.

It's honestly distressing to know that some of them will be pushed further into disability.
 
'A life sentence': The frightening trend emerging in young coronavirus patients
a81dd210-8690-11e9-9e5f-2a2fb69d0a1a

Nick Whigham
Yahoo News Australia13 August 2020
https://au.news.yahoo.com/frightening-trend-emerging-in-young-coronavirus-patients-092226298.html


 
cassava7 said:
In France, the minister of health, a neurologist, was interviewed on national TV last night. He stated that people seemed to be mostly affected by cardiac and neurological issues (and post-viral fatigue in a previous interview) and says that researchers are looking into dysautonomia. This is consistent with the recent publication from a French group of ID specialists. https://www.clinicalmicrobiologyandinfection.com/article/S1198-743X(20)30436-5/fulltext

Physical rehab/exercise therapy is being widely prescribed, in particular for PVF, with seemingly no warning (or knowledge?) about PEM. As usual it's based on the theory of deconditioning, even though some French long-haulers have been reporting that they experience PEM after minor tasks such as household chores.

It's honestly distressing to know that some of them will be pushed further into disability.
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Yeah that's not good. There was coverage on TF1 (last night I think) that ended saying they were using a vigorous training rehabilitation program. Awful. It also said no one had expected this post-viral illness, which is false. That's what happens when experts reject reality and substitute their own. Experts lie, people die.

 
Covid-19 “long haulers” are organizing online to study themselves

https://www.technologyreview.com/20...rs-are-organizing-online-to-study-themselves/

Slack groups and social media are connecting people who've never fully recovered from coronavirus to collect data on their condition.
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She didn't initially have access to a coronavirus test, and doctors who saw her virtually suggested she was experiencing anxiety, psychosomatic illness, or maybe allergies. “I felt very alone and confused, and doctors had no answers or help for me,” says Assaf, whose symptoms persist to this day.
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Until recently, the idea that a person could have the coronavirus for a long time was foreign. Doctors still don’t know what to do with these patients. At the beginning of the pandemic, those who got sick followed one of two paths: either they recovered or they died. Long-haulers don’t fit in either bucket.
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Except it was actually warned and would have been known had it not been for stupid psychosomatic ideology maligning those with personal experience as delusional.

To think that the BPS ideology was riding on a "mission accomplished" high, unchallenged and unquestioned despite catastrophic failure. The entire system of medicine needs serious reform, treating patients as stakeholders and ending the immoral practice of rejecting reality and substituting their own.

Congratulations to the BPS brigade, you broke medicine. Again. Now it's time for actual experts to do the thing that you could never do: actual work.
 
It really has been a long wait (25 years for me) for any attention to be paid to ME/CFS. Too bad that it has taken a deadly pandemic to force the NiH and the NIAID to look our way. I suspect Collins and Fauci are not happy about it. It's going to be interesting to see how long Covid plays out. More ME/CFS cartoons can be found at cfsgraphics.com

What took you so long.jpeg
 
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