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

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Trish said:
The Guardian:
https://www.theguardian.com/comment...virus-long-haulers-infectious-disease-testing

The coronavirus 'long-haulers' show how little we still know
Debbie Bogaert
My Covid-19 symptoms lasted for months. As an infectious disease specialist, I know the importance of widespread testing.
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The article did not mention post-viral illness or ME, but the Guardian highlighted one of the comments saying so, made it first in fact.

On those articles I'm seeing fewer of the initial nasty comments about malingerers, shirkers and whatnot. Even if it ends up being large, this cohort is just a blip to existing ME cases. The only different factor is happening all at once and visibly, but had they occurred slowly and without the connection from it being a worldwide event, it would have gone entirely unnoticed.

Then again there's that thing about a closed Facebook group of Swedish doctors mocking post-COVID patients. The public is willing to help, now we need those able to help to actually grow out of the damn conversion disorder ideology and get to work.
 
NBC NEWS Some COVID-19 patients aren't getting better. Major medical centers are trying to figure out how to help.

David Putrino, physical therapist and assistant professor at the Mount Sinai Health System, New York says it's a very real condition. He's begun to develop "a kind of protocol" with exercise plans, sleep regimes and nutrition guidelines.

Lung doctor Jessica Dine at Penn Medicine in Philadelphia tells of a hospital program with daily check-ins on patients at home via a texting service.

Stanford neurologist Mitchell Miglis says it's too soon to know if the condition will clear up or continue as a chronic disease. He and his team have begun developing a registry to track long-term Covid-19 patients over time.

Mount Siani dietitian Adena Neglis says that nourishment is important to support a healthy immune system.

Dr. Gary LeRoy, president of the American Academy of Family Physicians says "Eat right and stay hydrated".

It's striking that no one mentions the one thing the featured patient in the article, Anne Watson, says helps her, which is rest.
 
Trish said:
Wow, that's a perspective I hadn't heard about Wessely before, @Robert 1973 and very apt in this situation. Great way to make Wessely look a complete ass. I hope BMJ allows your comment.
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Reading Wessely's first half dozen publications on ME/CFS is very revealing. His view on it was fixed from day one, and he has not deviated since, other than an early concession that it was not just a form of depression.

Also shows his highly political style of debate was there from the start too.
 
Hopefully not too off-topic, but is there a good understanding of what causes short-term post-viral fatigue? Seems that a lot of post-COVID patients are not experiencing the full ME/CFS disbelief from doctors yet. If I were to caricature what some patients have reported, if one presents with fatigue/brain fog/etc a month after a serious infection like COVID, they are told 'it's bog standard post-viral fatigue and you'll recover from it'. Only once somebody has hit the 'magic threshold' of three or six months do they get a diagnosis of PVFS or ME/CFS.

Sooo... if somebody is told by a doctor it's normal post-viral fatigue, does the medical profession understand the pathological mechanism of such sequalae? What makes them so sure that such symptoms are 'real' if they last one month but not seven?
 
Londinium said:
Only once somebody has hit the 'magic threshold' of three or six months do they get a diagnosis of PVFS or ME/CFS.
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except that some are trying to get it recognised as a completely separate 'syndrome'
Scientists want to establish if "post-Covid syndrome" should be recognised as an illness in its own right.
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Over the next 18 months, researchers at King's College London will use data from a health tracker app as they look into whether the immune system could predict who would develop chronic post-viral fatigue after Covid-19.

Frances Williams, professor of genomic epidemiology at the university, said she suspected "post-Covid syndrome" had unique features but further funded research was needed to understand it.

She said: "It's vital that we explore whether it's a separate illness in its own right, we don't have the data to say that it is definitely, but it is looking that way."
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https://www.bbc.co.uk/news/uk-england-south-yorkshire-53084368

Something that gets thrown at ME is that sufferers vary so much both in terms of which symptoms suffered and severity, yet little is made of which virus different 'groups' of patients were infected with before they developped ME. Hence all the different names after the various 'outbreaks'.
The only real difference here is that the initial viral infection is being officially recorded and subsequent continued illness attributed to it (for now).
With ME that causation link was conveniently 'lost' by the bPS brigade.
 
Andy said:
N=1 but the list looks very familiar
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I searched for the long Covid hashtag and came across this:



So even some of the doctors who believe in “long Covid”, think it’s going to disappear in Month 6 for everyone? I think that it’s at the 6 month mark that things are going to get really interesting... when a lot of the post Covid people get their ME/CFS disgnosis and realise the shambles that it all is...
 
Article from two days ago in the Swedish newspaper Expressen. Includes an interview with prof. Jonas Bergquist. He says among other:

One explanation for why some people get sick for a long time and have a hard time with the recovery after having covid-19 may be that the energy function in the cells has been negatively affected, he says. This has been seen, among other things, in ME patients, which means that you can have setbacks if you overwork when you feel a little better. Another conceivable explanation is that covid-19 in extension can contribute to inflammation of the brain, which results in the immune system reacting to the body's own cells. Just as it does for example in the autoimmune disease Multiple Sclerosis (MS).

- What we see in these neurologically most severely affected covid patients is a huge blow to inflammation and disintegration in the brain. The brain falls into pieces you could say.

If the suites in the form of post-viral fatigue after a covid-19 infection become so prolonged that they last for over six months, you as a patient could possibly be diagnosed with ME, says Jonas Bergquist.
- We already have many people who report that they have impaired function or fatigue several weeks after they cough or have a fever. Unfortunately, a group of them will develop a longer-term fatigue.

Kvinnorna som inte blivit friske efter coronaviruset
google translation: The women who have not recovered from the Corona virus
 
I recently saw that in 1988 Melvin Ramsay sent a questionnaire to staff involved in in the 1955 outbreak. Apparently approximately 75% reported that they were still suffering effects, many of them severely.

Still, I suppose this report did not have the benefit of the peer review which M and B no doubt had.

Source: an MEA booklet from 1989
 
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Kalliope said:
Mount Siani dietitian Adena Neglis says that nourishment is important to support a healthy immune system.

Dr. Gary LeRoy, president of the American Academy of Family Physicians says "Eat right and stay hydrated".
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Wow thanks doc I'm cured! Here I was just not eating stuff and not drinking because I'm not used to normal bodily sensations, or whatever.

Said no one ever. Medicine not having any feedback mechanism from patients and just choosing to do what interests them looks downright silly. It's like a restaurant randomly bringing you plates with various stuff instead of the food you ordered.

The stupid. It hurts.
 
Tom Kindlon said:
"Coronavirus and ME: 'I had Covid-19 months ago, but its ghost still haunts me'
After contracting Covid-19 in February, Helen Kirwan-Taylor felt the return of some unwelcome symptoms"

Need to register to read:
https://www.telegraph.co.uk/health-...s-had-covid-19-months-ago-ghost-still-haunts/

Discusses her past history with ME
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This confirms a pattern I have seen emerging recently. On articles that are either more neutral reports on the topic or first-hand accounts of men, especially physicians, there is far more respect and consideration in the comments, even some appreciation for the severity of ME.

In first-hand reports from women, the comments are nasty. It brings out the trolls big time, as if some people actually have search alerts and jump on to dominate the conversation. This is especially evident with fewer comments but here there are a lot and there are more nasty comments than in most recent articles.

Very ugly pattern.
 
Kalliope said:
Article from two days ago in the Swedish newspaper Expressen.
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This was also in Expressen the other day (ME is mentioned briefly):

Läkare kritiseras för inlägg om långtidssjuka: ”Galghumor för att orka med”
https://www.aftonbladet.se/nyheter/...nlagg-om-langtidssjuka-galghumor-for-att-orka

Google Translate: 'Doctors criticized for posts about long-term illness: "Gallows humor in order to cope"'

Google Translate said:
In a closed Facebook group for doctors, conversations about the long-term ill have elicited strong reactions among colleagues.

- It's a disrespectful attitude towards patients, says a doctor.
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Response from a blogger with ME:

Att raljera är ingen rättighet!
https://mitteremitage.wordpress.com/2020/06/26/att-raljera-ar-ingen-rattighet/

Google Translate, English
 
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