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

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Dolphin said:
Not sure which thread to post this to. Haven’t checked it out myself
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Rapid Response from Patient Advocate Ian Stirling
https://www.bmj.com/content/372/bmj.m4721/rr
Re: Returning to physical activity after covid-19 Jonathan Korgaonkar, Azeem Majeed, Alison H McGregor, et al.372:doi 10.1136/bmj.m4721
Dear Editor, I read the article Returning to physical activity after covid-19 with extreme concern.
I believe it is possible that following the recommendations in the article may disable a substantial fraction of patients for life.

I say this as the article does not mention the nearly identical symptom spectrum and symptom spectrum trajectory between those with ME/CFS and those with longcovid.
https://www.medrxiv.org/content/10.1101/2020.12.24.20248802v1 'Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact'.

Many with severe longcovid are now meeting the diagnostic criteria in the current NICE guidelines for ME/CFS.

The approach in the paper is basically 'graduated exercise' that assumes there are no possible physical outcomes of exercise other than getting healthier once thrombotic or other severe events have been taken into account. The draft guidance for ME/CFS from NICE finds that it does not help patients. ( https://www.bmj.com/content/371/bmj.m4356 NICE backtracks on graded exercise therapy and CBT in draft revision to CFS guidance)

I note that 'psychiatric' symptoms are mentioned in the paper.
These are not as proven as the authors hope.
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more at link.

Edited to shorten quoted section and add direct link.
 
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Andy said:
First paragraph and separate link from above tweet (given that some people won't be able to view a tweet).

No mention of ME or any name variant.

Returning to physical activity after covid-19

https://www.bmj.com/content/372/bmj.m4721.full

I've tagged Physios for ME in the Twitter thread itself.
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And a second Rapid Response, in addition to the one above.

This guideline needs a bit more nuance - Returning to physical activity after covid-19
We welcome Salman et al’s(1) attempt to advise on practical tips regarding return to physical activity after COVID-19, as we can understand that there is a need to mobilise NON-Long Covid patients and reduce chance of thrombo-embolism and other sequelae of inactivity. We understand that this article does not apply to the Long Covid patient cohort. However, we feel that the recommendation would be improved if additional nuance could have been applied.
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https://www.bmj.com/content/372/bmj.m4721/rr-0

No mention of ME in this one.
 
Otago Daily Times (14/1/21): Post-viral illness thrust centre stage

Nothing new here, just a quite sensible opinion piece looking at the similarities between long Covid and ME and at the differences in how they're being treated or, in the case of ME, have been treated/maligned/ignored.

Still, the article is welcome since neither long Covid nor ME get a lot of media attention in NZ, and the little dig at the end at Covid complacency is sadly well warranted.
I wonder whether long Covid will be treated any differently from ME/CFS in the long run. I hope the former continues to be taken seriously by the medical establishment, and that sufferers are not provided with dangerous misinformation that I and so many other ME/CFS sufferers have received.

Regardless of whether long Covid and ME/CFS are the same illness or not, high-quality and ambitious research is necessary into post-viral lingering diseases. We need to tackle the question of why some people recover swiftly and easily from Covid-19 and other viral illnesses, whereas others do not. How can we best help those afflicted with post-viral illnesses? How might we establish recognised criteria for a working diagnosis of long Covid? What are the risk factors? How might we better facilitate access to appropriate healthcare and social support services?
[...]
Covid-19 is not a mere flu or mild, short-term illness. You might not die from Covid-19. But you might be irrevocably damaged and suffer from significant long-term health complications. Is complacency a risk worth taking?
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Full article here: https://www.odt.co.nz/opinion/post-viral-illness-thrust-centre-stage
 
Doctors suffering from long Covid believe official treatment is misguided
Jerome Burne

PROFESSOR Brendan Delaney developed a mild case of Covid just before the first lockdown in March, suffering the now-familiar symptoms of a cough, temperature and headache.

Feeling tired and achy, the 57-year-old GP self-isolated for two weeks, by which time he had recovered enough to return to work. But a week later, he suddenly experienced the "most extreme fatigue".

"I was breathless and had muscle pains and a recurring fever," he says. Prof Delaney, a specialist in medical informatics at Imperial College London, used to cycle 80 miles every Sunday, but after he developed long Covid – which is thought to have affected 60,000 people in the UK – even speaking to patients on the phone was a challenge. Sometimes he would feel better, but then he'd relapse.

Three months later, in June, when he'd been able to start working again (though only part-time), he still had brain fog.

The official treatment for lasting fatigue, which is now recommended to long Covid patients, is graded exercise therapy (GET). It involves doing a bit more exercise every day, with NHS website Your Covid Recovery suggesting: "It is important that you start being active as soon as possible after discharge from hospital... You should aim to build up to 30 minutes of activity at least five days a week."

For people exhausted by a simple phone call, this seems like a huge task.

This regimen has been prescribed for patients with the long-term fatigue condition known as ME (myalgic encephalomyelitis) or CFS (chronic fatigue syndrome) for nearly 20 years. However, when these patients complained they felt worse after exercise, they were told it was because they had a faulty belief that they couldn't exercise. As a result, GET was often combined with cognitive behavioural therapy to rid them of this mistaken idea.
The good news for these patients is that last November, treatment watchdog the National Institute for Health and Care Excellence (NICE), issued draft guidelines for ME which dropped the graded exercise approach from its recommendations – and replaced it with a treatment that is the exact opposite.
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https://www.irishnews.com/lifestyle...ieve-official-treatment-is-misguided-2180921/
 
Sarah said:
The long covid debate is about 10 minutes in on parliamentary TV and should run for approx 1 hour 20 minutes total.

https://parliamentlive.tv/Event/Index/80be651b-a5d0-42df-bb35-c6deacabe29f
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Well Jo Gideon MP wants to treat brain fog with walks by the River Trent!

Her whole speech was nonsense.

They cut off Carol Monaghan due to short time limits but she spoke well. There have been a couple of good mentions of M.E. Andrew Gwynne spoke well of his own experience of Long Covid.
 
Yesterday, PBS Newshour had a segment on Long Covid. No mention of ME, still at the personal interviews stage. I am really looking forward to some investigative journalism some day, individual interviews are a lazy way to report on something affecting millions.



VICE news also posted a report. No mention of the context that millions are already suffering the same kind of illness.

 
Immune determinants of COVID-19 disease presentation and severity

https://www.nature.com/articles/s41591-020-01202-8

Apart from the differences in severity among patients with acute COVID-19, it is now clear that a number of other outcomes are possible after an initial infection with SARS-CoV-2. After a long period of intensive care and mechanical ventilation, general anesthesia and severe illness, it is not surprising that long rehabilitation periods are needed14.

However, it is now also clear that some individuals with milder initial symptoms of COVID-19 can suffer from variable and debilitating symptoms for many months after the initial infection15,16. This condition is popularly referred to as long COVID. An exact definition is lacking, but typically symptoms with a duration >2 months are considered long COVID. The condition involves a range of symptoms such as persistent fatigue, myalgia, autonomic dysregulation manifested as postural orthostatic tachycardia syndrome, abnormal thermoregulation, intestinal disturbances and skin manifestations17.

This post-COVID syndrome bears resemblance to postinfectious syndromes that followed outbreaks of chikungunya18 and Ebola19, for example, and selected symptoms overlap with myalgic encephalomyelitis, a disease that is also often triggered by infection and immune activation20 and manifests as a dysregulated autonomic nervous system and perturbed immune parameters21.

More research is needed to understand the pathogenesis of all of these postinfectious conditions, and long COVID offers a unique opportunity to perform such studies in larger numbers of individuals, all infected by the same virus during a limited time frame.​

It's really weird how mononucleosis is so rarely mentioned despite being the most well-known of it. I guess because of the obsession with fatigue and nothing but fatigue.
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John Mac said:
Long-COVID Cases Rise as Stigma of Chronic Fatigue Taunts

You have to be registered with Medscape to read the article.

https://www.medscape.com/viewarticle/943886
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Great article! It still understates some details, describing as "frustrating" circumstances that are often deadly, and overplays the efforts that were made to solve it, especially the CDC's work at Lake Tahoe. But they asked the right people: Nath, Hornig, Moreau. Lots of focus on PEM and how it's the defining feature, not fatigue.

It's really sad that Molodofsky couldn't pursue his work from SARS. He was really on to something.
 
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Robert 1973 said:
As far as I’m aware there isn’t a single reference to ME/CFS let alone the ME/CFS Guideline in Long Covid Guideline. (Please correct me if I’m wrong.)
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There is. It says everything related to ME/CFS or PVFS is "out of scope". Another article (published in BMJ, IIRC) explained the reasoning: it said that they glanced at "the fatigue" but some LC patients "felt" it was different and related to organ damage. So that's it.

And here is her explanation for why she is not up-to-date on the topic of ME despite having just given a lecture on Long Covid and the relation to ME:



I am Jack's loud internal scream.

And from another tweet higher up: how was she just "set up" on the topic of fatigue? She spoke to an expert audience about a topic she admits herself not being knowledgeable about and attacked and blocked everyone who objects to basic factual errors and the dredging up of a fake controversy that is on the sole basis that there exist people who disagree with reality.
 
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