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

It can't be ME. He hasn't had it six months yet. Somehow it magically transmogrifies on that date.

 

There's a surprise

 

The long covid experience exactly mirrors what happened with my ME. The symptoms correspond with the damage seen in the acute phase so it seems unnecessary to postulate that it is caused by the reactivation of some other virus. Maybe but not the first thing to look for.

ME definitely occurred in epidemics. They were an exact match for what is happening here. Lots of people get ill at once and some do not recover. The virus was not identified at the time, but virology was in its infancy and the infectious disease doctors believed it was an enterovirus which they had a lot of experience diagnosing. New enteroviruses have been identified since the time of the Royal Free epidemic.

The direct link with viral infections has been deliberately lost by making a 6 month wait mandatory in the definition even though that definition came from the CDC being asked to investigate an outbreak.

There may be something which makes some people get better and others develop ME. One of the findings in the preCFS years was that ME was more likely where patients had 2 viruses at once. It was never investigated, all the money then went to psychological studies but it could be as simple as the virus getting deep into the body and evading the immune system. A herpes virus reactivating under such circumstances is a possibility but i doubt it is the case for everyone and it does not seem likely with covid 19

 

I think Hilda Bastian said she has been in touch with Paul Garner. He knows all about it, and he will have told her what he thinks by now.

 

That's probable the editor, but still it's quite a sea change. Very premature as well, CFS is still pretty much the only thing some MDs are aware of, but still, it signals a massive shift in attitude.

 

Long tail of coronavirus can prolong suffering for months

https://sg.news.yahoo.com/long-tail-coronavirus-prolong-suffering-months-110830077.html

It's a massive understatement to say that COVID-19 will change psychiatry for the best. I've seen many MDs speaking against ut, from mildly to forcefully, but within psychiatry there is next to no criticism of the MUS conversion disorder model. It's either accepted as fact or people don't dare stand out from the crowd.

Nothing like living it to understand just how flawed this ideology is. How nothing it contains has any connection to reality.

Edit: I guess besides Alan Frances, gotta give credit to his latest tweets being vocal about the silliness of ME being considered behavioral

 

Yes, on 5 June she said in the Cochrane review thread

 

A few months ago, I listened to a conversation between Ian Lipkin and Vincent Racaniello about his experience of being sick with covid 19 and his thoughts about the current state of play of the pandemic as well as his thoughts about the future. He mentioned m.e. in a context I don't recall, probably as a reference to his current concerns. What struck both my partner and I was that he referred to the disease as Myalgic Encephalomyelitis with no qualifier, no also known as or ME/CFS. Perhaps, it was because he was speaking to Racaniello and assumed his audience's knowledge or that, even better, it was decisional.

It's not only that Fauci used Myalgic Encephalomyelitis, in itself a speech act that for m.e. history is tantamount to a quiet world historical event and very moving, particularly for those of us who've had to bear witness to the absurdly incompetent and vicious neglect of vast suffering over several decades, it's pointing to as rvallee says a sea change both institutionally and just as importantly in terms of nosology. Goodbye syndrome hello disease. What is going on there?

 

https://twitter.com/user/status/1281649912590065664


When patients were assessed a mean of 60 days after onset of the first covid-19 symptoms, only 18 (12.6%) were completely free of any covid-19 related symptom, while 32% had one or two symptoms, and 55% had three or more. None of the patients had fever or any signs or symptoms of acute illness. Worsened quality of life was reported by 44% of patients. A high proportion of patients still reported fatigue (53%), dyspnea (43%), joint pain (27%), and chest pain (22%).

The study has limitations as it is based on a single centre with a relatively small number of patients and without a control group of patients discharged for other reasons. There is also a lack of information on symptom history before acute covid-19 illness and no information on symptom severity. Furthermore, the study authors point out that patients with community acquired pneumonia can also have persistent symptoms.

 

The use of ME without any other qualifiers in the last few days alone is massive. Like you said many times the name is used as is, without being uncomfortable about whether people may understand it. People don't actually know what CFS is so it's not as if it adds clarity.

It feels like an old Simpsons joke: "for once I'd like someone to call me sir without adding 'you're making a scene'". This feels a lot like that to me.

 

I just came across this which doesn’t sound good:

https://www.forbes.com/sites/willia...unity-to-covid-19-infection-may-fade-quickly/

 

I cannot read the linked article as it requires me to either turn off my ad blocker or sign in using a social media account, and I do not feel inclined to allow it to place tracking cookies on my pc, or use those provided by social media platforms.

So two thirds of people who catch covid-19, including those who required no treatment, have significant lung damage?

If this includes asymptomatics then that could eventually be a significant chunk of the human population of the planet.

The people who deliver my shopping require functioning lungs, I have stairs.

 

https://www.timesofisrael.com/its-f...s-still-suffer/amp/?__twitter_impression=true

ME/CFS not mentioned, but...

 

Just wondering if there is anything published to support Charles Shepherds observation that there are two groups, those suffering post viral fatigue and those suffering complications due to COVID like breathing respiratory, cardiovascular etc.

Thanks

 

This was posted by the Dutch.

Anyone with persistent respiratory symptoms after 8 weeks is supposed to have a chest X-ray. I've had persistent SOB and chest tightness since 1st April, so had chest X-ray and spirometry last week. All normal , symptoms are now starting to ease.

 

Original research article here:

https://www.nature.com/articles/s41591-020-0965-6

 

This looks like an exact transcript of what Fauci said

https://www.meaction.net/2020/07/10/dr-anthony-fauci-says-that-post-covid-syndrome-is-highly-suggestive-of-myalgic-encephalomyelitis/

 

I wonder what the stutter was about. If you watch the video, he hesitates and stutters several times before saying ME.

I'd really like to know what's happening behind the scenes, how this is discussed and in relation to decades of pointed denial, especially the refusal to do anything beyond the bare minimum in the last few years. Medicine can be about as secretive as the Soviet politburo, lots of things happening about us that we are denied any right to know or have input. A terrible unaccountable system, in my opinion. That needs to change completely and ASAP.