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

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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

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"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
 
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Chronic fatigue syndrome a possible long-term effect of Covid-19, experts say

Terri Wilder became dreadfully ill in 2014, falling asleep immediately each day after she got home from work and laying in bed all weekend, recovering just enough to drag herself to work the next week.

"I could barely raise my hand to hail a cab," she said.
After nearly two years, Wilder was diagnosed with a disease called myalgic encephalomyelitis, also called chronic fatigue syndrome, a neuroimmune condition with symptoms including brain fog, severe fatigue, pain, immune aberrations and post-exertional malaise.
She had worked for decades as a social worker and activist for marginalized communities, focusing on HIV research and education programs and LGBTQ health. Wilder was shocked to find that ME/CFS lacked a drug approved by the Food and Drug Administration, and scientists studying the disease only received about $5 million annually in research funding from the National Institutes of Health.
At that point, she found herself in an altogether new marginalized disease community, reminiscent of the stigmatized groups she fought for at the height of the AIDS epidemic in the 1980s.
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https://edition.cnn.com/2020/08/07/...ndrome-covid-19-survivors-wellness/index.html
 
Coronavirus: 'I survived, but am now living a nightmare'

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

Aside from her other symptoms, Jennifer has continued to lose weight due to regular waves of sickness and loss of appetite.

Doctors suspect she has developed ME, also known as chronic fatigue syndrome, as a result of the virus.

"It has been an actual living nightmare," said Jennifer.

She has joined online support groups and met many people who are experiencing similar after effects.

"Our lives are completely on hold - we can't do anything.

"If I'm able to go to the park with the children alone for 15 minutes then it's been an outstanding day.

"My husband has essentially become a single parent. He does everything. It's so much stress, mentally and physically."
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Dr Michael Head, senior research fellow in global health at the University of Southampton, told the BBC that while little is known at this stage about long-term effects of the virus, stories like Jennifer's are becoming increasingly common.

He said that "a lot of people have reported feeling terrible even months later, so it is going to be a big problem for policy makers and the health service going forward".
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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.
 


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.
 
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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

There is some precedent for a pandemic creating a wave of neurological health problems. Svenn-Erik Mamelund, a social scientist who has studied the demography of epidemic diseases for more than 20 years, told Yahoo that there was a jump in reports of neurological and psychiatric problems worldwide for years after the 1918 flu pandemic. Survivors complained of trouble sleeping, dizziness, depression and difficulties at work. And many people reported similar neurological symptoms after the 1889 Russian flu and the 2009 H1N1 pandemic.
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While it’s too soon to say whether such post-COVID conditions will be chronic, Chen is worried about recovered patients being able to return to work and school. “Patients are going to be somewhat debilitated, so their ability to work, their contribution to the workforce, to the domestic product, is going to be reduced,” he said. “It will affect society on many levels if the rates [of infection and long-term illness] persist to be this great.”
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Indeed, some of these long-term symptoms are akin to myalgic encephalomyelitis, also known as chronic fatigue syndrome (or ME/CFS), which is a neuroimmune syndrome marked by brain fog and extreme fatigue. And ME/CFS already has an estimated $17 billion to $24 billion impact on the U.S. economy based on medical bills and lost income from many patients being unable to work, according to the CDC.
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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.
 
Dolphin said:
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.
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I can understand why she wouldn't want an ME diagnosis but it still hurts to read that.
Up to half a million Britons are suffering the effects of "long Covid", MPs have been told, with some doctors dismissing many of the long-term symptoms suffered in the wake of coronavirus as ME.

Psychosis, fatigue, loss of eyesight and mobility issues are among the wide-ranging conditions that have been identified in those who have previously had the virus.

Claire Hastie, the founder of the Long Covid Support Group, warned that GPs were regularly misdiagnosing ongoing problems as anxiety or ME, saying: "Many people in our group to this day are being told by their GPs that it's caused by anxiety and it's all in their heads.

"It can cause anxiety, but it is not caused by anxiety. The science needs to catch up with us."

Ms Hastie said data from the King's College London symptom tracker app showed that between 200,000 and 500,000 people in the UK are currently living with the long-term effects of Covid-19.
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This link might give full access, https://web.archive.org/web/2020080...-coronavirus-can-linger-months-cause-lasting/
 
As someone only diagnosed 5 years ago I’d say it takes time to understand the situation and listen to and hear those who have decades into this. It’s probably a bit easier if you’re one person looking for support and a community. If you’re a whole cohort you’ve got your own community there and can ignore those “outside” voices if you think they’re not that relevant. Let’s see what she thinks in 12 months time.
 
MPs have been told, with some doctors dismissing many of the long-term symptoms suffered in the wake of coronavirus as ME.
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Concerning on two fronts.

First that people with long covid need to be investigated properly and not dismissed or given any hasty diagnosis - some have organ damage or blood clotting that need to be diagnosed.

And second that ME is considered a reason to dismiss a patient.
 
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.
 
Andy said:
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/
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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.

Trish said:
First that people with long covid need to be investigated properly and not dismissed or given any hasty diagnosis - some have organ damage or blood clotting that need to be diagnosed.
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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
 
From Twitter she seems to be invested in the link up her group has made with UK Sepsis Trust which obviously must be an acceptable connection.......

eta

@rvallee this was the thing I saw

ETA 2 and here’s the pinned tweet on sepsis trust. I’ve not watched the video yet

ETA3 ok so maybe not quite as it seems from that Telegraph article
 
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Shinygleamy said:
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.
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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.
 
Mij said:
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.
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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.
 
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