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

There was a programme on British TV last night Surviving the Virus: My Brother & Me
https://www.bbc.co.uk/programmes/m000ljnb
One of the van Tulleken brother's got covid and is having problems recovering. The only thing that is a little different to m.e. is him running a temperature currently and his heart arythmia?, but his walking away from the camera at the end was noticeable to me that he wasn't lifting his feet fully and was walking partly from the hips. It was a good program in showing the consequences of having let covid run amok in the population, a tragedy for many people.

 

Just sharing this article since Natural Killer Cells have long been associated with ME/CFS (and I live in Minnesota, USA hence how I came across it).

From the StarTribune: https://www.startribune.com/univers...42/?ref=nl&om_rid=3520749001&om_mid=979813833

"
"University of Minnesota turns Natural Killer Cells against COVID-19"

Article:

"A part of the immune system that appears to be suppressed in severe COVID-19 cases is now being used in a clinical trial against the infectious disease at the University of Minnesota.

A female COVID-19 patient in her 50s received an infusion on Wednesday with an experimental therapy containing natural killer (NK) cells, innate components of the immune system that can wipe out tumors or infected cells.

“They attack sick cells, and when we say sick that typically means malignant or virally infected cells,” said Dr. Joshua Rhein, the U physician leading the trial.

The U’s work with NK cells until now has primarily been in the development of therapies for leukemia and other cancers. The COVID-19 trial is using an experimental therapy called FT516, which is manufactured by Fate Therapeutics and was developed through U research.

U researchers have spent months planning the COVID-19 clinical trial and gaining the signoff of the U.S. Food and Drug Administration, said Dr. Jeffrey Miller, deputy director of the U’s Masonic Cancer Center and a national leader in NK cell research.

Given that many cases of severe COVID-19 involve inflammation and an overreaction by the immune system, there is concern about using a therapy that boosts the immune system, Rhein said. On the other hand, NK cells have antiviral properties. And research in China showed a suppression of NK cells in severe COVID-19 patients, suggesting they are not part of the immune system overreaction and could instead be a solution.

“We think that the cells are going to help as an antiviral,” Rhein said, “but there’s that possibility that somebody who is headed toward that inflammation type of picture — the worry was that we could push them over the edge.”

Researchers are seeking patients who have been hospitalized for COVID-19 and have biomarkers that suggest they are at risk for such an immune system overreaction — but haven’t suffered it yet. Infusions are happening one patient at a time to monitor the outcomes, with doses increasing in subsequent patients.

The NK study is the latest in an aggressive response by the U to the COVID-19 pandemic. U researchers launched the first double-blinded, placebo-controlled trials of hydroxychloroquine, ultimately determining that it did not prevent the onset of COVID-19 or the development of symptoms in people exposed to the virus. The U also was part of the national study of remdesivir, an antiviral that has been federally approved for treatment of hospitalized COVID-19 patients."


If anyone has any thoughts, please feel free to share.

- Dakota

 

https://edition.cnn.com/2020/08/07/...ndrome-covid-19-survivors-wellness/index.html

 

https://www.orlandosentinel.com/opi...0200806-svexyw7tmberzlhykdnetg7f3m-story.html
https://twitter.com/user/status/1291707202445758466

https://twitter.com/user/status/1291707862041985028

https://twitter.com/user/status/1291708586452803584

https://twitter.com/user/status/1291709898183540737

https://twitter.com/user/status/1291710250521890816

https://twitter.com/TomKindlon/status/1291711948527206402
https://twitter.com/TomKindlon/status/1291712360370118657
https://twitter.com/TomKindlon/status/1291712864303153153
https://www.facebook.com/TomKindlonMECFS/posts/1719150768233041

 

Coronavirus: 'I survived, but am now living a nightmare'

https://www.bbc.com/news/uk-northern-ireland-53611139

Decades of lies add up to a very hefty debt.

I see however that no one has yet budged from the very courageous position of "somebody should do something". Thoughts and prayers, instead. I guess most are just hoping it goes away on its own, which is somewhat familiar thinking. That'll totally solve the problem.

 

https://twitter.com/user/status/1291809656491384834

 

https://twitter.com/user/status/1291528230382387202


Anything the director of a large research institution dedicated to infectious diseases could do? No? Nothing? Oh, well. I guess we just wait for the recovery fairy to provide hope and for the disability fairy to dispense secondary benefits?

I'm not sure what's the context here, if this was in response to a question.

It's important to keep asking those questions. Put them on the spot, make them show they know about and simply choose to do nothing, so that they can't pretend they didn't know once they are forced to act later on.

 

It's a pity that it was just the same in the late 1980's and 1990's when he was not at all perturbed.

 

55% of coronavirus patients still have neurological problems three months later: study

https://www.marketwatch.com/story/55-of-coronavirus-patients-still-have-neurological-problems-three-months-later-study-2020-08-07

Brain fog is getting a lot of respect over time. Something medicine has always dismissed entirely as irrelevant complaints. In a service economy where productivity is dependent on knowledge and cognitive skills, the impact is enormous.

Money talks. Medicine has never cared about the human suffering of ME but maybe the money people will care about the economic impact enough to get something going. Something actuaries can actually do. We're relying almost entirely on chance, who gets it and how that can motivate significant funding. A single billionaire would change everything. So silly.

 

Claire Hastie, the founder of the Long Covid Support Group, warned that GPs were regularly misdiagnosing ongoing problems as anxiety or ME



https://www.telegraph.co.uk/politic...-coronavirus-can-linger-months-cause-lasting/

I can’t see the full article.

 

'Long Covid' could cast a long shadow over thousands of lives https://www.telegraph.co.uk/global-...covid-could-cast-long-shadow-thousands-lives/

I can’t see the full article.

 

I can understand why she wouldn't want an ME diagnosis but it still hurts to read that.

This link might give full access, https://web.archive.org/web/2020080...-coronavirus-can-linger-months-cause-lasting/

 

As she may be a solicitor, perhaps enquiries should be made as to the intended interpretation of the "or" in that "anxiety or ME". One does appreciate clarity of drafting.

These feelings of exceptionalism are amusing to observe. It is fortunate that there seem to be wiser heads amongst them.

 

If you know anything about the stigma and way M.E.people are treated you're probably are going to resist becoming 'one of us'. It's a bitter pill to swallow. I do hope the compassion for covid survivors is going to extend to those with M.E. in the end. Because, whether a post covid person likes it or not, the most likely explanation, for a good proportion of them, is M.E.

 

Why not diagnose them with Post-COVID Syndrome? They all become ill from the same viral infection.

ME can manifest from different viruses etc and I would prefer ME be left out for the time being since we don't have solid biomarkers for PEM.

On March 30 TV actor Nick Cordero had his leg amputated due to COVID complications and died in July:

https://www.scmp.com/news/world/eur...dway-actor-nick-cordero-who-had-leg-amputated

 

It's also perfectly natural with ME having been obsessively rebranded as just fatigue and nothing else, with fatigue of course itself containing multitude symptoms. So both one symptom but also many symptoms. A syndrome of one symptom was always an absurd construct but that's just BPS for you. The confusion makes it naturally repulsive, while many, like me, will simply dismiss it because calling this chronic fatigue is completely invalid.

So in a sense it's extremely ironic that they are troubled by being misdiagnosed as ME because "it isn't just fatigue", echoing the dismissed screams of millions before them. And the fact that most GPs think of ME as essentially the same as anxiety, because it's obviously perfectly normal for symptoms to have their own symptoms. Somehow. When the absurd is normalized, normality can only be absurd.

I'm actually most surprised that we haven't heard about MUS and FND yet. I guess it's because it's too hard to dismiss the virus as playing a role, but it's not as if facts ever stopped their delusional ramblings about mind and body before.

 

I don't understand this argument, unless it's also supporting the idea of breaking up "ME" out into all of its different triggers - so I'd be in the post-measles syndrome, while others would be in post-EBV syndrome, etc etc.