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

Thanks, Mij. I wish I knew! I've been given no info and I don't know what to expect. I see frightening stuff in places about people with even mild infections having serious problems come up later but I haven't been able to find any credible source that lays out public information on it aimed at patients.

I've found this NHS info about treating individual symptoms but nothing detailed about prognosis other than the frequency distribution of length of illness.

 

She was also the author of METRIC. Great work RCGP.

 

Trending on Medscape: https://reference.medscape.com/viewarticle/937400.

I can answer that one: no, not nearly enough, not by a long shot, repeating the same mistakes, stubbornly not learning anything from decades of failure by dismissing the decades of failure entirely. Doing enough was needed several decades ago. Denial has consequences.

 

An interesting talk.

ME/CFS wasn't mentioned, but towards the beginning Fauci says:
It really is now making it quite clear that we do not know as much about this virus that we have to know. Particularly that the symptoms that you're talking about are real. These are not imaginary. I mean sometimes when you have post viral syndrome.. one of the things, because they are so elusive, people tend to think that well, maybe they’re imaginary or not feeling things. Well, fatigue is sort of a vague thing.. muscle aches a little bit vague thing,

But when people start having things like really bad shortness of breath, dysautonomia, difficulty in temperature control , really serious lack of concentration. Inability to focus. Those are the things that fall under the category of somewhat nondescript but really real.

We believe they’re real. And we are starting now support of studies both here at the NIH as well as funding our grantees and our contractors to be able to study this over a long period.

The interviewer from Survivor Corps said among other that we might be looking at the largest group of disabled Americans in history, including wartime. She also said that a name for long Covid shouldn't include the word "syndrome", as that didn't go well for other patient groups.

 

Fauci may be a powerful ally. Like myself, he was buried in autoimmune disease with major physical signs for decades and like me he probably saw little of ME and formed no clear opinion that there was a real process out there. Now that he is thrown into the middle of 'nondescript' symptoms without signs or positive tests he will probably see the reality. He is a sharp observer. He just needs to focus on something new. He may also be motivated to help with Long Covid through frustration that he was not listened to about the severity of Covid. He is also perhaps the most universally respected of all US biomedical scientists.

 

I'm not sure that that is a tenable argument without admission of errors over ME. He was prepared to defend Strauss against proper political questioning. If he was not "in the middle of nondescript symptoms " at the time he had no right to take the positions he did. The matter is easi;y resolved, but it needs him to address the issue.

 

As someone involved in medical research administration Fauci would have been encouraged more than I was to extrapolate from his ignorance into making ill-advised statements. Yes, he would have been in error, but then so was I. We thought we knew that there was nothing to see. I think Fauci is humble enough to admit his error, or at least to make amends, since admission might just stir up opposition and weaken the impact of a new approach from him.

 

Daily Mail - Coronavirus: Children are now being hit by 'long Covid' symptoms too

Article has interviews with among others Nigel Speight and Charles Shepherd.

Dr Speight said: 'Long Covid exhibits some unique symptoms, but the overall pattern is the same as any post-viral illness, and children suffer from those constantly.'

...

Fabricated or Induced Illness – formerly known as Munchausen syndrome by proxy – is a recognised disorder in which a parent or carer exaggerates, invents or causes an injury or illness in a child. It's seen as a form of child abuse and, although no one knows what triggers someone to act this way, one theory is that it's a way of gaining attention.

Dr Speight says it's not uncommon for mothers, in particular, of children with post-viral conditions, to be accused of it.

'It's a story we've heard hundreds of times,' he says. 'Sadly, some doctors have little interest or expertise in chronic fatigue and are quick to dismiss concerns.'

Nearly half of all children with chronic fatigue so make a full recovery. 'But in the meantime, these parents need support, not suspicion,' adds Dr Speight.

 

see
https://www.s4me.info/threads/bps-attempts-at-psychologizing-longcovid.16013/page-16#post-298082

let's hope he isn't coaxed over to the dark side

 

TV, Sweden: Vetenskapens värld Corona: vaccinen är här - och de långtidssjuka (58 minutes)
https://www.svtplay.se/video/289014...3-corona-vaccinen-ar-har-och-de-langtidssjuka

 

Meet the Long Haulers Developing ME/CFS

https://www.meaction.net/2020/10/30/meet-the-long-haulers-developing-me-cfs/

 

The whole notion of recovery needs to be re-evaluated. Its current definition coming strictly from acute critical care of "not gonna die" is obviously insufficient. There literally isn't a term for this yet, of not being in risk of dying from but also of not being back to normal. I guess that's convalescence, but even then it's so damn tricky because of examples like below, as it's assumed to be linear.

I've seen so many reports of this, this very chaotic cycle of improvements and crashes. Including improvements significant enough to mostly report feeling being back to normal, which is nothing like it, at least not reliably.

Maneesh has been one of the Long Covid people to report on their whole experience, quite extensively. About 10 days ago he felt "back to normal" (where have we heard that before?!), almost free of symptom, had energy. He didn't seem to have done too much since then, although that gets so hard to judge once the symptoms lift.

10 days where he marveled at the brain fog being gone and having energy. I have seen so many stories like it. The days in-between vary a lot but the cruelty of just how arbitrary, random, it all is is the pattern. This is frustrating but this thing where doctors reject reality and substitute their own is not working out at all.

https://twitter.com/user/status/1322832143911952385

 

It does look as thoughthe condition being suffered by many of these people is exactly ME as originally described. This probably accounts for the confusion in some circles. It has nothing to do with CFS.

 

Thanks for sharing, @mango I am watching it now.

ME is mentioned, but in a confusing context. It starts at 34.18 minutes into the documentary.

The documentary says some symptoms of long Covid resembles of ME and then takes us to the new private clinic "Red Clinic" outside Stockholm. They are treating ME patients and are also offering an experimental treatment for Covid patients.

They also do research, but it turns out that they hadn't applied for ethical approval of their research project on Covid, so it has been shut down.

The founder of the clinic, dr. Jonas Axelsson is also working as an immunologist at Karolinska University Hospital. He says some of the ME patients he is treating get better, some even return to work after having been bed bound, so for him this is a calling.

His treatments are symptom relieving drugs and antiviral drugs. He believes that those who get sick have inherited a weakness in the immune system which is a weakness that allows for a chronic virus infection in for instance nerve cells. It could be one of several herpes viruses, which are common, but in these patients it seems the immune system is not able to suppress it. When people then get infected with the corona virus, the immune system runs out of control. The hypothesis is a chronic virus infection because the patients are not able to clear the virus..

His research project was to look for remaining virus activity in 350 Covid-19 patients. When asked about the lacking application for ethical approval, he stops and leaves the interview.
According to the documentary dr. Axelsson had previously stated in interviews that he's collected samples from Covid patients for research.
The day after the interview for the documentary the clinic's website says the study has been cancelled.
Then dr. Axelsson says to the journalist that he will report himself to the police.
Some days later he writes in a letter that he never started the research project and has committed no crime.

Then the documentary cuts to another immunologist at Karolinska University Hospital, Petter Brodin (whom I believe has been involved in ME research? The name rings a bell..) who finds all of this concerning and says he doesn't believe in dr. Axelsson's hypothesis.

 

Thank you so much for the recap, @Kalliope! I haven't been able to watch it myself, so I really appreciate it. indeed...

I wonder if this is the research study they were talking about?
https://www.s4me.info/threads/the-redbank-study-recruiting-red-clinic-jonas-axelsson.17027/

 

Going back to that tweet by ManeeshJuneja it raises an interesting question. How could anybody imagine that such a condition could be caused by deconditioning , or perpetuated by a fear of exercise. It was always argued that those who suggested these things must have been seeing an entirely different group of patients. They always insisted that they were not. So they invented the non existent boom and bust. What was that about policy led evidence making..?

 

I am wondering why the name 'Red' seems to keep recurring in the context of problematic private facilities.

 

Is it making you cross?

 

Just an olfactory experience of rodents.