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

Status
Not open for further replies.
Dolphin said:
https://inews.co.uk/news/coronaviru...id-19-chronic-fatigue-long-term-health-440730
Click to expand...
The good news is that further research is underway by King’s College London. Professor Frances Williams and her colleagues will be using existing data from the college’s TwinsUK study – the most clinically detailed of its type in the world – and new data from the app to examine the rates of Covid-related after effects.

“We just don’t know the numbers yet, but I think it’s going to be quite a big problem,” she said. “What we’ve seen with chronic fatigue after other viral infections is a fairly variable course which may be prolonged. People do get better from it, but we can’t predict who’s going to get better quickly and who’s going to take much longer. We hope to put right the lack of research over the next few months.”
Click to expand...
Doesn't fill me with confidence
 
Dolphin said:
Doesn't fill me with confidence
Click to expand...
Professor Frances Williams gave a presentation at the CMRC conference in 2018:
Prof Frances Williams presented on 'Twins and the study of chronic pain genetics' on day one of the UK CFS/M.E. Research Collaborative (CMRC) fifth annual science conference, 19 and 20 September 2018, Bristol.
Click to expand...


From https://www.actionforme.org.uk/uploads/images/2018/12/CMRC-Conference-2018.pdf:
Twins-UK is a biosource that collects data in the form of questionnaires and biological samples (blood, saliva, urine) from volunteer adult twins throughout the UK.

This enables the study of genetics and environmental factors involved in the development and progression of various traits and diseases.

Professor Frances and her team has conducted a study on pain genetics in which twins underwent a pain test using increasing heat, in order to identify variants influencing pain perception.

The results revealed that the more ‘insensitive’ people to pain had a higher number of rare genetic variants. Also, the risk of experiencing chronic pain increases with increased age and Body Mass Index.

They have also shown that chronic pain syndromes (including irritable bowel syndrome, fibromyalgia and chronic pelvic pain) are heritable conditions and their results suggest that they share an underlying chronic pain genetic disposition which is 68% heritable. Also a form of pain called neuropathic pain is 37% heritable.

Finally, chronic widespread pain and neuropathic pain were shown to have shared genetic factors.
Click to expand...

It's about the most generic statement, though. People do get better from cancer as well, though few people feel the need to mention that.
 
I saw someone with ME on Twitter highlight this. I haven't listened to it myself to see how relevant or otherwise it is.

https://www.economist.com/podcasts/...destruction-how-the-virus-wears-the-body-down
Babbage
Covid-19’s path of destruction—how the virus wears the body down

Our podcast on the science and technology making the news. Also this week: what lasting damage does the coronavirus do to the body and mind?

Economist Radio
Podcasts
________________________________
Jun 10th 2020

SLAVEA CHANKOVA and Kenneth Cukier investigate the ways in which SARS-CoV-2, the virus which causes covid-19, wears the body down. Apart from pneumonia, there are other facets to the disease that are less understood such as damage to the kidneys, blood vessels and heart. And, how does covid-19 continue to harm the body—and patients' mental health— in the long term? Runtime: 26 min
 
One of the most amazing things in the post-COVID population is to see how the language about exercise and exertion is basically a topic of total consensus. It's not even subtle. Exercise is the worst possible advice to recover from post-infectious illness. The patient community figures this out almost instantly by simply communicating their experience. While the UK RCGP and other formal bodies build evidence to advise exactly this, with predictably disastrous outcomes.

An example:


This is a common type of thread. Even threads that aren't specifically about exercise often have mentions of how someone tried that and it made them relapse and people saying "SAME!" and "be careful, rest, take it slow". It's categorical. Every mention of exercise is filled with warnings of "DON'T" and "WORST MISTAKE" and on and on.

The same thing with ignoring symptoms, which is the CBT approach. The consensus is exactly the same and overwhelming, not a close 51:49 split, but something like 95% consensus. Exactly as we have been saying for decades. Because of the lived experience, one that manifests itself right from the start and, as we know, continues in those unfortunate enough to remain ill.

Some of the BPS angry rants about us are about the fact that we always opposed this because we irrationally rejected a psychological explanation. Rather this is showing plainly and clearly that it is clearly aligned with the lived experience, learned quickly early on but here vastly facilitated by the fact that the COVID community is able to connect in large numbers, something we never could do.

Which puts into perspective all the objections from the early days. They were clearly rational. It makes the patients worse, simply, plainly. It was explained and documented also very plainly and clearly. Reaffirmed constantly for the decades that followed. To even ask the questions of whether exercise or ignoring symptoms was always an absurd starting point, always an invalid proposition.
 
From the Tahoe Outbreak to COVID-19 Dr. Peterson and Simmaron Take on the Coronavirus - and ME/CFS

This time it’s different. Many of those sickened by the virus will not have to live in limbo. Doctors will be able to follow COVID-19 treatment guidelines knowing that their patients actually have COVID-19. Doctors will be able to treat patients and track their stages of recovery without being ostracized or looked down up. Simmaron can help elucidate the long term impacts of this virus and use that to inform our understanding of chronic ME/CFS.

This time, if pandemic patients develop ME/CFS, doctors will know they did so not because of an unidentified, usually benign cold virus but because of COVID-19 – a fearsome pathogen we know can wreak havoc on many systems of the body. They won’t be able to sweep ME/CFS under the rug with claims of hysteria, depression or somatization like they did 35 years ago.

Knowing COVID-19 is involved is a potential game changer not just for the patients who have trouble recovering, and the doctors treating them, but for the field of ME/CFS itself. The opportunity exists for this disease to finally be taken seriously.
Click to expand...
http://simmaronresearch.com/2020/06/covid-19-tahoe-outbreak-peterson/

Just imagining how much progress had been done had the CDC and NIH not botched the job and blocked this disease from being taken seriously is sickening. Millions and millions of lives wasted on the altar of mass hysteria.
 
strategist said:
French doctors say 5-10% of covid-19 patients have persisting symptoms.



A person commented in another tweet that in her support group 80% of patients with persisting symptoms are younger women.
Click to expand...

Yeah that's a bad one. Presents PTSD as the likely cause and focuses on rehabilitation, exercise, psychosocial fluff, etc. as the way to go. Clueless on the problem. Even a plain mention that the high prevalence of women is probably because of the mental duress falling mainly on them.

But at least it's discussed and there is recognition that research is needed. That's probably still better than it being buried for now. And the same numbers seem to prop up, of about 5-10%. Strangely enough from reading the COVID19Positive subreddit I don't get the impression that there is this much imbalance between sexes, more of a 60:40 split than a 80:20 one. There seems to be a selection bias. As usual.
 
Applying a BPS approach on something really physical is a vicious circle, you can't win. You have these symptoms and of course, when nobody can explain them and believes you, you get scared. And then they take your anxiety as the cause of your symptoms and you become more desperate and scared and so on.

You have to appear extra super sane in order to be taken seriously and you're not allowed to have a normal reaction to scary things.

Seeing a doctor then feels like a diplomatic negotiation, not a consultation.

Edit: @rvallee : Maybe the typical Reddit user tends to be male?
 
Some more recent coverage.

40 Percent of Coronavirus Patients Have This One Symptom for Weeks
As the authors of the article note, "Post-viral syndromes have been associated with numerous viruses in the past, but until the pandemic, they were considered relatively rare." They further explain that researchers remain unclear as to whether extended coronavirus symptoms indicate a long-tail recovery, or if instead they reflect a cyclical recurrence of the illness itself, still thriving in the body. Unfortunately, this latter theory has precedent: three fourths of cases of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are the result of viral or bacterial infection. It is possible that for some, coronavirus could pose a lifelong threat.
Click to expand...
https://www.msn.com/en-us/health/me...-one-symptom-for-weeks/ar-BB15r3Ed?li=BBnbfcL


Man who had coronavirus symptoms still feels 'possessed by a demon' 83 days after falling ill
The man is professor Paul Gardner. Doesn't appear to have improved much.
"You don't know what you're going to get or when you're going to get it."

The Government says the National Institute for Health Research put out a call on Tuesday for scientists to assist in a study on the "health and social care consequences" of COVID-19 "beyond the acute phase".

Prof Garner said: "It's really horrible. I've now been unwell for three months. I have enormous fatigue. On Monday I walked 5km and the next day I couldn't get out of bed.

"If I do too much it floors me. It's viral fatigue. I don't know how long it will last but it will be weeks to months. Who knows with this disease.

"With some people it takes years with chronic fatigue syndrome.

"I feel I've made a bit of progress since last week so I'm cautiously optimistic and I think most people will get better.
Click to expand...
https://www.liverpoolecho.co.uk/news/liverpool-news/man-who-coronavirus-symptoms-still-18420073


Kiwis infected with Covid-19 still battling debilitating symptoms, despite being cleared of virus
In the last couple of weeks Alice has been given a formal diagnosis of post-viral fatigue by her doctor.

She posts about the diagnosis on a particularly rough week of fatigue 11 weeks post-Covid-19.

"I will be fine - it's just turning out to be a bit of a longer road than any of us expected."

Post-viral fatigue seems to be a common theme among Covid-19 suffers with thousands in social media groups speaking about their symptoms online.

From fatigue, to loss of smell and taste to shortness of breath and muscle aches, thousands of young and old from around the world post about how they’re struggling to recover from their battle with Covid-19.
Click to expand...
One thing I find disappointing is all this "not a big deal, just take months off work and it will be fine" coming from doctors. Most people can't do that, just take months, possibly more, to recover. Without income. Many who have children who don't somehow pause needing parents. Not a big deal. That's completely unrealistic, especially as the most common advice is to ignore it and push through it.

https://www.tvnz.co.nz/one-news/new...litating-symptoms-despite-being-cleared-virus

Copied to the Paul Garner thread and responses relating to that article moved.
 
Last edited by a moderator:
Shinygleamy said:
I would love to see the exercise folks in America put covid cases through a two day exercise test and see if they come out exactly the same as m.e. folks. Wonder if professor Garner's seen that piece of research? It's something he should be interested in.
Click to expand...
I've seen plans to do that. Can't remember where but I remember seeing exercise stress testing as part of a planned protocol for long-term COVID-19 patients.

If done well it would be very instructive. Hopefully they quickly realize the harm in doing that and end it ASAP after seeing the results.
 
Three Chord Monty said:
Covid-10 Will Be Followed By a Deconditioning Pandemic

blogs.bmj.com/bmj/2020/06/15/covid-19-will-be-followed-by-a-deconditioning-pandemic/

Click to expand...

These people talk just like Ace Ventura: with their ass.

It's really easy to falsify this. Lots of COVID had a very acute phase that forced them to bed and remained bed-bound extensively. Many more never were, are still having serious symptoms without ever having been bed-bound. Many have tried to exercise, many have jumped to exercise almost immediately. The deconditioning hypothesis is super easy to falsify and this here shows it is purely ideological, what they want to be true, rather than what is.

It shows the focus of severity remains centered around the very severe respiratory cases. Many long-term cases were mild in the acute phase, completely debunking this assumption. The article paints exactly this image. It is the one physicians see. It is not the common experience but it is the one they see. This is failing at object permanence. Good grief do better than this for the sake of millions of people do 100x better than this.

This thing where imagined evidence is just as good as verified objective evidence? Yeah, it's extremely bad and needs to stop ASAP.

And keep struggling it's good for you? WTH kind of psychopathic nonsense is this? Words. Have. Meaning. Struggling in this context does not mean trying to lift 100 kg and using all your might to do it. The gaps in medical training are so wide you could fit the ship in Spaceballs twice through.
 
Status
Not open for further replies.
Back
Top Bottom