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

A lot of info about the treatments etc in this Facebook post by a Red Clinic patient:

 

She is a long Covid patient and a board member of the Swedish Covid Association. She's being treated at the Red Clinic with the antiviral drug Valganciclovir (Valcyte), along with methylfolate, magnesium, zinc, drinking salt water, suger/gluten free diet, no carbohydrates and compression socks. She started feeling better just after a few days and have now been treated for 1 1/2 months. She lists symptoms that have improved and symptoms she's still struggling with.
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Posts discussing Magnesium treatment for ME have been moved to this thread:
https://www.s4me.info/threads/magnesium-deficiency.4019/page-2#post-298711

 

https://twitter.com/user/status/1323184020348411904

 

Rapid Response:
Re: Virology, transmission, and pathogenesis of SARS-CoV-2 ; comparison of post viral symptoms in previous outbreaks.

30 October 2020
Derek Enlander
Physician

Mount Sinai Medical Center ,. New York
1035 Fifth Avenue New York 10028

full text
https://www.bmj.com/content/371/bmj.m3862/rr-1

@dr enlander

 

Thread:
https://twitter.com/user/status/1322297007755722752

https://twitter.com/user/status/1322297641091387398

https://twitter.com/user/status/1322305305431212034

They are the first few; click on one of the links to see the rest if inclined.

 

Some of those comments from Homeslice seem misguided and unfair on LC patients to me.

Why would they not want a different label to avoid the problems with ME/CFS? If PEM is useful for describing their symptoms, why not use it? If they can avoid some of the unhelpful treatment we've faced, why would they not do that? Maybe LC patients are being treated better than ME/CFS patients, but it still seems that a lot of them are being treated badly. It seems that some are being treated just as badly as ME/CFS patients.

I understand being angry with medical institutions and those with power within these systems, but it's important to not let any of that spill over towards newly sick patients who don't have any particular responsibility to us or our illness. If we act like they do then imo we're just going to come across badly and make potentially useful alliances more difficult.

 

I agree with what you say @Esther12.

I don't see a problem with highlighting that testing & treatments that may be available to some long covid patients (most certainly not all) has been denied ME patients for years. This isn't the fault of the newly ill though. We can lay the fault firmly at the door of the BPS illness deniers and the system that swallowed their guff unquestioningly.

I have no objections to people who suffer from PEM, as described by us with all the variations we experience, using the term. As long as it's not being repurposed to describe something different. I'm not convinced it is always being used the way we use it, though sometimes it is.

I would prefer a collaborative approach where ME and long covid sufferers can compare and contrast their experiences, learn from each other and allow researchers to learn too. Twitter isn't really the platform for that.

 

I totally agree.

I'm on a facebook group for ppl with long covid trying to offer what little wisdom I have to help them. (I'm mostly trying to help them learn from my mistakes - they are being prayed upon by the same snake oil salesmen we've dealt with for so long and they're not prepared!) These people are going through a horrible time and I personally find it touching when they express the wish that their suffering and the attention being drawn to it will help people with ME too. It's said with kindness imo and I appreciate it. We can all hope for the best for each other and try to be kind.

I do understand Homeslice's frustration though.

 

Yes, I think so too. There is unfairness and prejudice here, but its not the LC patients, its the medical system (in its full context) that is biased. That is where the responsibility lies.

I think an opportunity exists here to use this now visible bias to force change. ME politics is about to have an opportunity we have not ever had.

Many with LC do however have problems arising out of blood clots and lung damage that we do not typically see in ME. Many of those may benefit more from specialists than the average ME patient, including vascular and pulmonary specialists.

Orthostatic intolerance would appear to be a major exception . . . no matter your disease its a treatable condition, and nobody should have to wait long. There are probably other exceptions we can identify as we learn more about what is going on.

 

Has that ever been denied by those claiming similarities with ME? Surely we only claim that some cases of post covid are sufficiently similar to PVFS/ME to be regarded as probably "the same" condition. It is perfectly reasonable to acknowledge the causative pathogen in the name ascribed, in cases where there is certainty about the pathogen, or perhaps even probability, but that does not mean that one should accept distinctions in the absence of difference.

 

I don't know. What I am trying to do is unpack the issues, make it more clear. With clear issues articulated we can then debate.

My suspicion, not a fact, is that your description of what amounts to ME with pathogen specific complications, if you don't mind me putting it that way, is accurate.

The issue here though is that some are upset over preferential treatment. However the system is biased, and has been for a very long time. The people with LC are our potential allies, its the system we must change.

 

I don't think it's been posted because it's paywalled but here's a screenshot of a WSJ article that appears on the front page:

https://twitter.com/user/status/1323287686715645952


Apparently the WSJ paywall is disabled tomorrow for the election so the article may be accessible.

Edit: this appears to be an accessible version of the same article: https://www.livemint.com/science/he...terious-long-term-effects-11604299285637.html.

I am very much looking forward to being able to consult with a doctor who doesn't either do air quotes around "dysautonomia", has never heard of it or pretends otherwise. It's weird how it's so casually discussed and yet for 99% of people with dysautonomia they get brushed off with anxiety and never have access to actual medical care. So damn weird to see two conflicting realities existing at the same time.

And yet exertion intolerance is not found anywhere on any list of signs and symptoms, not even recognized, usually not even recorded, anywhere. From my reading of thousands of accounts, I would say it is the most prevalent symptom. And it is yet to be recognized. Lordy.

Paging Drs Van Elzaker and Proal (and... Kristoff?). Anyway, Polybio.

Swing and a miss. No evidence whatsoever that "structured rehabilitation" does any better than a healing crystal, after decades of failed attempts. As best we can tell recovery, if it happens, is natural and not caused or precipitated by anything specific. No basis for that claim.

 

Red Clinic has published a statement on their website:

http://www.redclinic.se/sv/index_sv.html

 

https://www.theguardian.com/commentisfree/2020/nov/03/long-covid-time-recover

This is a great article that focuses on the political dimension of rest and returning to work after long-Covid (or indeed any post-viral illness). The article also mentions ME/CFS and its relation to long-Covid.

"In Britain, many of the safety nets that would have allowed people to rest have been dismantled. The ideology of austerity that was based on a false binary of shirkers and strivers, of “alarm clock Britain” and Benefits Street, entrenched an assumption that remains common today: that those out of work and on disability benefits are malingering. This legitimised the reduction of financial support for those who needed it, with capability assessments for benefits such as personal independence payment and employment support allowance often found to have failed sick and disabled people.

In my case, I only began to feel better once I had committed myself to rest. I had to train myself to rest, to accept how thick time feels when you’ve forbidden yourself from doing very much at all. Fatigue made everyday activities nearly impossible. To return to a semblance of normality, I had to become a household Taylorist, measuring the precise gestures and the effort each movement required to make tasks like going to the toilet or making tea or washing my hair safe and less exhausting."

 

Brilliant article, thanks for posting.

 

I know her! (Vaguely...) She was president of, I can't remember what exactly, maybe the feminism society, during my time at uni.

 

https://twitter.com/user/status/1323646952433737732

 

I've read some of the LC patients things on Twitter. Some are being refused scans and X-rays since "You didn't have a test for Covid". Yeah, because they were sick early on, and tests weren't available unless you were hospitalized. They were the people who were told to self isolate at home because a lot of them weren't "that sick" but now that's coming back to bite them. Who knows if they have lung or heart damage, or other organ damage? Nobody is likely to know when they are being refused tests by their GPs and consultants.

 

I had long Covid – but not everyone gets time to recover

https://www.theguardian.com/commentisfree/2020/nov/03/long-covid-time-recover

Important point that Paul Garner made early on: how the hell are people supposed to deal with prolonged convalescence without any support, especially financial?

Pretty interesting to read this in the Guardian, which has been especially vociferous against us in promoting the BPS ideology.

Comments are definitely growing more supportive with time.