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

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Kalliope said:
Article today in Berliner Zeitung - Corona könnte krankhaft - chronisches Erschöpfungssyndrom auslösen
google translation: Corona could trigger disease - Chronic Fatigue Syndrome

Article has a summary of recent research and quotes from Carmen Scheibenbogen.

Approximately 17 million people worldwide suffer from the severe neuroimmunological disease ME / CFS, commonly known as chronic fatigue syndrome. The corona pandemic could make the situation worse.

ETA: Also includes Bhupesh Prusty, Naviaux, the recent victory in the European Parliament, 12th of May and more
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There's really something to the 17-20M estimate of ME sufferers and how even in the worst case scenario COVID would only marginally add to the count yet framing it as something remarkable. There are already so many of us, unless the pandemic goes way out of control and infects hundreds of millions it's unlikely to add significant numbers compared to the whole.

The thing that is remarkable here is not how much worse it makes the situation, it's just that it's way more visible, in everyone's faces. The same thing has been happening for decades, not unseen or invisible but deliberately buried and dismissed. In numbers far larger than this. But the spotlight. It takes a spotlight and, especially, medical professionals experiencing for the first time something that is completely unlike what they thought it was, because they were trained wrong on purpose by delusional fanatics. It's a perfect metaphor to the disconnect between acute and chronic medical care. One occupies all the space, the other gets the leftovers, if even that.

I lost the bookmark but a virologist got a severe case and mentioned something to the effect that "it wasn't just fatigue, this was exhaustion". Because what they're taught about fatigue is so completely wrong that when they actually experience it themselves they are in total disbelief about it. "This can't be post-viral syndrome, this is serious!", is also the substance of disbelief, but even for an acute infection the severe exhaustion level is not supposed to be such a damn surprise. Coming from virologists and infectious disease specialists is such an incredible level of failure.

Anyway. It's just remarkable to see the cognitive dissonance cracking, though it will take a while for the understanding to ripple through the medical community.

Seriously a great article. Blunt. Doesn't mince words.
Those affected often go to psychiatry and are mistreated there. There is no social aid.
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Are mistreated there. Correct. Scandalous! Horribly broken. Morally bankrupt. Enough of being held captive by these lunatics.
 
Whitney Dafoe has (through his sister?) published a very moving post on Facebook:



OMF has shared his post both on Twitter and Facebook. I can't help wondering if OMF really stands behind the opinions expressed in Whitney's post, in particular this one:

We are already seeing Coronavirus patients get over the infection but not fully recover and who will likely get rubber stamped with \"post viral syndrome\" or some such diagnosis which does nothing but get them out the door. What these partially recovered Coronavirus patients really have is ME/CFS.
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I have to admit it makes me feel uncomfortable, seeing statements like this being re-published/shared by OMF. I completely understand that they want Whitney's message to reach as many people as possible, but I would expect them to at least add a disclaimer of some sort.





What do you think/feel about this?
 
I very much appreciate any effort to raise awarness for us and to "warn" Covid patients to give their body sufficient rest so they might be spared a long term illness.

But we simply don't know if Covid will lead to a higher percentage of ME cases than other infections.

So jumping on the Covid bandwagon for the sake of ME research making this notion of certainty...I'm not sure.
 
I respond to this article with enormous sympathy for Whitney's awful plight, and accepting that he is giving his perspective of the situation. It's not a scientific article, it's one very sick man's perspective constrained by the limited access he has to information. I can't criticise him for that.
 
Trish said:
I respond to this article with enormous sympathy for Whitney's awful plight, and accepting that he is giving his perspective of the situation. It's not a scientific article, it's one very sick man's perspective constrained by the limited access he has to information. I can't criticise him for that.
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I agree. My question was about OMF sharing the message post-covid = ME/CFS. Sorry if I was unclear.
 
Huffington Post UK: Coronavirus Is Leaving People With Serious Fatigue - What Can You Do About It?

Interviews with professor Paul Garner from Liverpool School of Tropical Medicine and dr. Charles Shepherd from the ME Association on Covid-19, post viral fatigue and activity management.

While we don’t know for sure the causes of CFS/ME, there are a number of theories about what might trigger it – one of which is viral infections.

The ME Association has noticed that people with diagnosed CFS/ME are experiencing a “significant exacerbation” of their CFS/ME symptoms after having the coronavirus. However, Professor Garner believes we should be cautious about calling it post-viral fatigue syndrome for now.

“The virus, and the body’s response to it, clearly causes a myriad of symptoms,” he tells HuffPost UK in an email – some are similar to symptoms of other viral infections, some are unusual and some are similar to the symptoms of CFS/ME. “As things stand, by the UK definition, this is not chronic fatigue syndrome or ME because a) we know the cause and b) it hasn’t gone on for four months.”

Copied to the Paul Garner thread
 
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IMHO What COVID-19 may teach the wider world is that instead of ignoring people with ME and making baseless unscientific claims about the nature of the condition, which has been happening, though less now than previously, people may begin to understand it is something more widespread than previously acknowledged which could happen to anyone and which has a serious impact on our joint enterprise.

The lesson as I see it is that viral illness is something we all need to grapple with and is something we need to understand and fix for the future. What I am seeing in reports of how the illness is affecting people suggests there will be another batch of people with ME who will not be fit to return to work after the virus has finished sweeping through the population, which it will do if lockdown is being lifted.

Hopefully this will register on public awareness because of the way everyone has been forced to change their behaviour due to the impact of the virus, so they are ready to learn new things about the nature of viral illness and above all respond intelligently to it.

I agree it would be counterproductive to overplay our part and best to avoid being seen as adding to hysteria but at the same time I think it is our duty to educate the rest of humanity and help raise awareness about the way viruses can cause ME and why we need to work together to respond better to that.
 
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Article in the Icelandic newspaper Morgunbladid where the patient organisation ME-félags ísland expresses concern of a possible increase of ME following the pandemic. They say the medical assessment for ME in Iceland isn't good, and that ME patients thus may end up with a wrong diagnose, again leading to wrong treatment approaches as exercise and cognitive therapies. They ask for this situation to be improved so that ME patients will be protected against wrong treatments and also get to learn about activity management.

Hvetja til skimunar fyrir ME-sjúkdómnum
google translation: Encourage screening for ME disease
 
dr. Anthony Komaroff for Center For Solutions For ME/CFS
Will There Be a Post-COVID-19 Form of ME/CFS?

Will some people who get COVID-19 subsequently develop ME/CFS? After all, many people with ME/CFS say that their illness began with some kind of infection: “a virus,” “a flu,” “a bad cold.” When it started, their illness didn’t feel that different from similar illnesses in the past, so no tests were done to determine what kind of infection it was. Their doctors thought there was no need, since these minor infections typically get better. Only this one didn’t get better, and the cause of the initial illness remained a mystery.https://cfsformecfs.org/2020/05/12/will-there-be-a-post-covid-19-form-of-me-cfs/
 
Tom Kindlon said:
This is her response, for what it is worth:

I wonder what she offers to CFS patients: my guess given she is in the UK, it is probably CBT and GET. Does anyone know?
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https://news.liverpool.ac.uk/2017/01/17/the-liverpool-view-post-ebola-syndrome-is-not-going-away/

Dr Janet Scott and Dr Calum Semple, from the University’s Institute of Translational Medicine, collaborate with the Ebola Survivor’s Clinic at 34th Regiment Military Hospital in Freetown, Sierra Leone.

[..]

The causes and physiological processes associated with CFS are not yet determined. Current areas of investigation include infection and inflammation as well as altered immunity. Evidenced based treatment programs include graded exercise and cognitive behavioural therapy. Might inspiration be taken from this approach for PES?
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This video has been making the rounds on the COVID19Positive subreddit. It's been posted several times in the last few days.



It has some good bits, but some very bad ones too. Very ignorant of the history, it actually cites the Wessely Chalder paper redefining ME as CFS that can be treated with CBT as seminal and seems to imply that this was essentially the start of the field, rather than what effectively killed it. Completely oblivious to the decades before, but also bizarrely accepts that the controversy is over, when it could not be in a worse state than it currently is. It actually suggests that it is taken seriously, which within the NHS no less is completely wrong.

It does recommend CBT, actually skips over GET but still recommends exercise. It explicitly states that it always resolves, seemingly based on his own experience.

What better video could be used instead? It basically presents the science along with the pseudoscience as equivalent. There's another video being shared by Phil Hammond but I haven't bothered watching it.

It's a rather clear explanation, I'll give it that, but it has some very misguided and misleading bits.
 
The Sun
Coronavirus patients at 'greater risk of ME or chronic fatigue as they recover'
CORONAVIRUS patients are at risk of suffering from ME or chronic fatigue as they recover, experts are warning.

It's estimated that more than 250,000 Brits already suffer from myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome, according to the NHS.

However, scientists are now warning of a possible surge in the number post-viral fatigue syndromes in the wake of the coronavirus pandemic.

People typically develop ME following a bout of viral or bacterial infections such as glandular fever or pneumonia, with symptoms including muscle and joint pain, extreme exhaustion, nausea, dizziness and insomnia.

Now experts have warned that around ten per cent of people who have suffered from severe Covid-19 symptoms could go onto develop fatigue syndromes.

Volunteer group MEAction Scotland said there is a real threat of a surge which could impact the already struggling health and social care systems.

Professor Chris Ponting, chair of medical bioinformatics at The University of Edinburgh and group leader in the MRC Human Genetics Unit, said: "Unfortunately, it is possible that Covid-19 will lead to an increase in the number of people with ME.

"Of those people who have Covid-19 symptoms quite severely, I would expect about ten per cent to have fatigue-like syndromes after six months."

Janet Sylvester, who volunteers with the MEAction Scotland, described the figure as shocking and said people need to be aware this could be "coming down the line".
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full article here
https://www.thesun.co.uk/news/11606412/coronavirus-patients-risk-me-chronic-fatigue-recover/
 
Given that fatigue appears to be defined, much the same as many other symptoms, to be 'whatever we say it is - but not what you think it is, as you're not trained to know what it is', I am quite interested in how the difference between 'fatigue' and 'fatigue like' is defined.

Are we also quite sure of the definition of 'quite severely' used in 'people who have Covid-19 symptoms quite severely' and on what basis the figure of 10% is arrived at, and not 1%, or 32.7% - especially given that, at least in the UK, ME cannot be diagnosed until at least 4 months from 'onset' (more typically at least 6 months + a decade or so of GPs ignoring you) - and 4 months haven't yet elapsed so no figures, at all, exist as a basis on which to make such an estimate.
 
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