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

The Scientist - Could COVID-19 Trigger Chronic Disease in Some People?

The disease—formerly known simply as chronic fatigue syndrome, or CFS—has long been stigmatized to the point of being ignored by many physicians and researchers, in large part due to its mysterious etiology. Doctors would rule out a number of diagnoses, such as viral infections or neurological diseases, and conclude that there was nothing wrong with such patients, sometimes advising them to simply get more exercise, which would make their condition worse, notes Frances Williams, a genomic epidemiologist at King’s College London. An incident in which a high-profile study purported to identify definitive causes, which later turned out to be false, may also have discouraged scientists from studying ME/CFS, Nath adds. And while some drugs have been trialed in ME/CFS patients over the years, the results so far have been inconclusive, Moreau says, leaving few treatment options for the disease.

ETA: Article includes statements about ME research from Avindra Nath, Alain Moreau and Mady Hornig. Ends with Nath saying:

“I think people—agencies, Congress, everybody—should be really focused” on the possibility that some COVID-19 patients will develop ME/CFS, Nath says. “They really need to appropriate resources to quickly get into this field, get lots of people interested in studying these patients, and try to get the bottom of it. . . . If you don’t do it, it’ll be a missed opportunity.”

 

It's quite different when people want to get it right because the topic is prominent. Wow. Love this.

 

‘It’s soul-destroying’ — Dublin GP says requests for COVID tests have
returned to March levels

<https://extra.ie/2020/07/17/news/irish-news/covid-test-requests-rise>
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I have just emailed the editor at New Scientist to very politely enquire why they have not covered the launch of DecodeME as it wasn't in this week's issue either

 

https://www.medscape.com/viewarticle/933619#vp_2
https://www.medscape.com/viewarticle/933619#vp_3

 

I hope this doesn't become an oft-repeated excuse. It's not like there was a throng of scientists out there just champing at the bit to conduct meaningful biological research into ME/CSF who suddenly became disconsolate as a result of the XMRV debacle of a decade ago. US government health agencies had been sitting on their hands, implicitly discouraging researcher interest, since at least the Lake Tahoe outbreak of 1984. That's a quarter century of institutional disinterest prior to the XMRV paper. If anything, the amount of ME/CFS research has increased in the years following the retraction of the XMRV paper - a phenomena which probably has a good deal to do with patients, patient organizations and researchers becoming more visible to one another due to the internet.

This notion that we'd be so much further along were it not for XMRV is ill-informed and suspiciously convenient.

 

I thought at first it was the PACE trial they meant

You make a good point and perhaps it's even the opposite that's true? Wasn't it the XMRV saga that got Ian Lipkin into ME research, for instance?

 

The XMRV episode was the first time that many mainstream scientists and doctors realised that ME was a serious disabling disease. Before that it was the older polio experts and a few interested researchers alongside those who either had the disease themselves or someone close to them.

A spotlight was shone on ME which has never gone out. To borrow a cliche the genie came out of the bottle and has not gone back.

It may be that the most important outcome was the way the patient community began to unite through social media which has given a voice to the sickest among us. There have always been expert patients, but the patient scientist getting peer reviewed and published is a wonderful outcome.

(I thought they were talking about the PACE trial too!)

 

Now shared on Facebook. The Scientist has over 2 million followers there.

 

Professor Frances Williams quoted above re the PACE trial spoke at CMRC 2018.

https://www.youtube.com/watch?v=407fxoyD-VQ

She works at Kings College and spoke about the heritability of pain.

 

I think this also refers to frances Williams:

"Williams and Hornig are both making use of apps they and others have developed to identify and track the progression of long-haulers. Williams’s app, which encourages people to log SARS-CoV-2 infections and submit regular reports on their symptoms, was released just before the March peak of infections in the UK and has been downloaded by 3 million people so far. Of them, around 3,000 are twins who are part of a long-term study of how genetic factors influence health, and have already provided blood as well as genetic samples before the pandemic. Williams and her colleagues will use the data to try to tease out genetic and immunological factors that help determine who suffers from long-term disease. “That’s going to be essential, I think, for working out what’s going on. Because once you find genetic abnormalities, then [skeptics who still dismiss ME/CFS as a psychiatric disease] will have to accept it,” she says."

Above quote is from
https://www.the-scientist.com/news-...-trigger-chronic-disease-in-some-people-67749

 

I think Dr. Lipkin's interest in ME/CFS actually goes back to the 1984 Lake Tahoe outbreak. I believe he was in San Francisco at the time and Dr. Dan Peterson got in touch with him to discuss the outbreak (unless I'm misremembering).

Also, Dr. Lipkin was the principal investigator on a 1999 paper that found no connection between CFS and the virus that causes Borna disease, an infectious neurological syndrome of warm-blooded animals, possibly including humans.

 

https://edition.cnn.com/2020/07/19/health/long-covid-italy-uk-gbr-intl/index.html
Italy:

UK

 

"rehab"

 

All these studies which have ruled out viruses suffer from the mixed bag that is CFS, especially in 1999 US where exercise problems were not considered at all.

It is unlikely that all ME is from Borna disease but any positive cases would be swamped by the others.

I haven't read this paper, just that a lot of the historical work had these problems. A positive result means something but a negative result could have many causes. Just an aside.

 

https://twitter.com/user/status/1285182474633478144

 

https://twitter.com/user/status/1284536208157216768


https://theconversation.com/coronav...source=twitter&utm_medium=bylinetwitterbutton

Interesting how this piece by Frances Williams seems to differ from the one by Katarina Zimmer in The Scientist that quotes Williams.

In 'The Conversation', William Speaks only about "chronic fatigue", circumnavigates ME and even CFS in the text, but links to Pariante's study study allegedly on a proxy model for CFS and also to education material for doctors which actually is:

https://www.studyprn.com/p/chronic-fatigue-syndrome

Edit: Oh, that's Nina Murihead's course which I didn't expect when I skimmed the article -- good!

Also linked, as a 'guidance for patients in managing chronic fatigue and how to conserve energy' is the RCOT guidance on 'rehabilitation': https://www.rcot.co.uk/node/3474

Tweet retweeted by SW by the way.

 

https://twitter.com/user/status/1284960268829818882

 

So he's retweeted an article containing a link/recommendation to Nina Muirhead's course? hehe i'm guessing that was inadvertent