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

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

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

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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.
_________-

Posts discussing Magnesium treatment for ME have been moved to this thread:
https://www.s4me.info/threads/magnesium-deficiency.4019/page-2#post-298711
 
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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
Dear Editor
It is interesting to compare post viral symptoms in hree conditions, Covid 19 pandemic (2019) , SARS CoV corona virus outbreak (2003) and Myalgic Encephalomyelitis Chronic Fatigue Syndrome(ME CFS)
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full text
https://www.bmj.com/content/371/bmj.m3862/rr-1

@dr enlander
 
Dolphin said:
Thread:



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

Esther12 said:
If PEM is useful for describing their symptoms, why not use it?
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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.
 
Esther12 said:
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.
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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.
 
Esther12 said:
Some of those comments from Homeslice seem misguided and unfair on LC patients to me.
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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.
 
alex3619 said:
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.
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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.
 
chrisb said:
Has that ever been denied by those claiming similarities with ME?
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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:



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.

Doctors say some patients appear to be developing dysautonomia, or dysregulation of the autonomic nervous system, the part of the nervous system that regulates involuntary functions like breathing, digestion and heart rate, some researchers and doctors said.
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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.
David Putrino, director of rehabilitation innovation at Mount Sinai Health System in New York City, said the majority of the more than 300 long-Covid patients being seen at its Center for Post-Covid Care appear to have developed a dysautonomia-like condition. About 90% of such patients report having symptoms of exercise intolerance, fatigue and elevated heartbeats. About 40% to 50% also report symptoms such as gastrointestinal issues, headaches and shortness of breath.
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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.
Dr. Putrino said inflammation from the virus might be disrupting the normal functioning of the vagus nerve—the body’s longest cranial nerve—which relays messages to the lungs, gut and heart.
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Paging Drs Van Elzaker and Proal (and... Kristoff?). Anyway, Polybio.
The constellation of such neurological symptoms, along with persistent fatigue, joint pain and headaches, resembles myalgic encephalomyelitis, also known as chronic fatigue syndrome, said Anthony Komaroff, a Harvard Medical School professor of medicine who has studied the syndrome for decades. The condition can follow certain viral and bacterial infections, he said. He thinks the condition likely follows Covid-19, too, at least in a portion of patients. A 2009 study of 233 SARS survivors found 27% met criteria for chronic fatigue syndrome four years after getting sick.
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How long it will take long-Covid patients to recover remains unknown. Dr. Putrino said most of them won’t get better on their own, and will need at least six months of structured rehabilitation.
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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.
 
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mango said:
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
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Red Clinic has published a statement on their website:
Google Translate said:
We reject the portrayal that is conveyed in The World of Science

Red Clinic appeared in the World of Science's program on Covid-19, which was shown on SVT on 2 November 2020. We strongly reject the report about us. We believe that it is skewed to reflect the journalist's hypothesis that Red Clinic conducts treatment research without a permit. We really do not do that - it would be both illegal and unethical.

We want to be clear that no studies on the treatment of Covid-19 have been conducted or are being conducted at Red Clinic. However, we have sought permission for a descriptive study of possible similarities between prolonged symptoms after other paraviral diseases, which we treat, and ditto after Covid-19.

We applied for an ethics review for this study on August 20, 2020. The application has been processed by the board, which requested a linguistic change in the patient information and that it be translated into English. We have sent in the supplements they asked for and are waiting for information as of this writing (20-11-02). We hope to start the study as soon as possible.

Red Clinic has written to The World of Science and criticized the report on several points but received no response.
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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."
 
chrisb said:
Has that ever been denied by those claiming similarities with ME?
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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?
When people ask me about long Covid, all I want to talk about is rest. We don’t yet know everything about this disease, but if its symptoms overlap with post-viral illnesses and with chronic fatigue syndrome (CFS/ME), which they appear to, we can assume that rest will play a significant role in its treatment.

The ME association stresses the importance of rest, of pacing yourself and returning flexibly to everyday activities, rather than pushing yourself to return to previous activity levels. But rather than giving people time rest and recuperate, the dominant medical treatments for illnesses such as chronic fatigue syndrome and ME are graded exercise therapy and cognitive behavioural therapy to challenge patients’ allegedly irrational beliefs about their health.

Rest is not something that everyone who becomes sick can afford. I was only able to rest because of the generous sick pay that my PhD scholarship offered – and, crucially, because I had a partner who was willing and able to do all the cleaning and cooking.
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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.
 
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