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

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https://hub.jhu.edu/2021/11/30/young-people-long-covid/

JHU: "Young People, Long Covid"

"We want to raise attention that it's more than just death—we have people who have symptoms that linger with them for months on end, which can be just as devastating to families and individuals," says epidemiologist Priya Duggal, a co-lead of the Johns Hopkins COVID Long Study.

"Peter Rowe, who is treating Wilhelm, suspected early in the pandemic that a wave of post-viral illnesses would follow."

"Most had had mild respiratory illnesses. Their lungs and heart checked out nearly perfect—but they were "completely flattened by fatigue, cognitive dysfunction, and lightheadedness," says Rowe, director of the Chronic Fatigue Clinic at Johns Hopkins Children's Center. "Those are some of the cardinal symptoms of chronic fatigue syndrome, and they're turning out to be cardinal symptoms of long COVID."
 
When you don't know that "chronic fatigue" is actually serious and shouldn't ever have been dismissed. Alternatively it could be dismissed again so the cycle repeats again and again... Hard to think of a charitable interpretation of that quote.

And if this is an official reason... ready the class action lawsuits because they will be huuuuuuuuge. Especially as time only added evidence for it. Are they seriously not the least bit aware of this? Guess so.

It would be really important to FOI this and how much of a role it played. Probably similar things happened elsewhere, I very much doubt this would be unique to the UK.



I don't know what this means:

 
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I am unable to find the thread for the NIH RECOVER initiative so have to post it here, or PASC, or however name the thread uses.

https://patientresearchcovid19.com/open-letter-regarding-the-recover-initiative-to-study-long-covid/



Basically, the NIH needed oversight for this program. There is none. Therefore the NIH is floundering, for the same reasons it failed to do anything for the decades that lead to this:

An Open Letter to NIH, NHLBI, NYU and all RECOVER Initiative stakeholders, including people with Long COVID:

...

Many of the issues on our current List of Concerns have previously been raised in communication with both NIH and RECOVER leadership. But without any central, accountable system of community and patient engagement, we have no indication of what has been considered or how these concerns have been or will be addressed.

As Long COVID patients, we have an overriding interest in doing all we can to ensure that the RECOVER Initiative succeeds. Although it has been frustrating to experience barriers to collaboration thus far, we are nothing but eager to work proactively with you, your staff, and the leaders of the RECOVER Initiative in addressing pressing issues and moving forward together as productive collaborators.​
 
Mij said:
She seems to have a problem with the term "a chronic fatigue syndrome" being used to describe LC. She feels that pwME should also distance themselves from using the term CFS.
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I can confirm, been following her from the start. Not always easy to express that on twitter, but she has the same objections we have. And in part because of how LC is dismissed as "just" that, when it's so much more than fatigue (and a different definition of it).

Of course the problem is that the objections are irrelevant, this is the name (and wrong definition) medical professionals know, somewhat. Especially over "fatigue", or something like it, being the "main" symptom. So, exact same issues, just without the context we have when nothing we said resonated with anyone.

It's hard to communicate without a common vocabulary and an agreement over what physicians mean. I am currently reading a sci-fi novel involving establishing first contact communication between different species. And of course the universal language is science. Except we aren't discussing using science when it comes to ME/CFS, because physicians are discussing it from an emotional narrative perspective, or whatever. There is no common scientific vocabulary, it's far more literary than scientific.

So basically more like the Star Trek TNG episode where the universal translator fails not because of technical limitations but because the other guy speaks in (literal) riddles. Both sides have to accommodate for that. We haven't even begun that phase yet, we report what's happening, they reply in riddles and speak of unrelated things. Not much communication to be had there. On that, LC is in the same pile of poop as we have been.
 
Dolphin said:
This patient has on and off being trying to distance Long Covid from ME/CFS for approximately 18 months though her specific motivation here is unclear:




I don’t accept this.
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"People are dying in #LongCovid. They are also having thrombotic events, cardiac events, strokes, and more. I am worried to seeing articles speaking of a "chronic fatigue syndrome" in the press."
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"I am talking about #LongCovid being presented as a chronic fatigue syndrome in the press when it's clear it's a multi system disease with severe cardiovascular impact."
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Thinking about it, Myalgic Encephalomyelitis doesn't get across a cardiovascular angle, including deaths, which is what she is complaining about.

I don't trust her.
 
Another fight for Covid long-haulers: having their pain acknowledged
https://www.statnews.com/2021/12/02/long-covid-pain-not-acknowledged/

A universal problem but adds up a lot to the hypothesis that most, if not all, of the various chronic illnesses, including fibromyalgia, are immunological. Which is logical with even a minimal understanding of the immune system but whatever, I'm gonna go ahead and boldly predict based on *checks notes* an overwhelming pattern of evidence.

In a recent study from Italy, for example, one-third of Covid long-haulers had symptoms of fibromyalgia or widespread muscle or bone pain. Other research links Covid-19 to neuropathic pain — often described as burning, stabbing, or feeling like electrical shocks — that results from damage to the nervous system. Pain, which also includes headache, ranks among the top symptoms of long Covid in large longitudinal studies.

Yet the medical establishment has been sluggish in acknowledging and treating the pain that people with long Covid experience.​

I think that's quite unfair to slugs, some of which can be quite energetic.
 
rvallee said:
So basically more like the Star Trek TNG episode where the universal translator fails not because of technical limitations but because the other guy speaks in (literal) riddles.
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Wonko said:
In that episode the solution was to find, and kill, the unkillable invisible monster.
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"Sharpe and Wessely... at Oxford"

"Sharpe, his mind in equipoise"

"BPS, when the walls fell"

:nerd::thumbup:
 
Dolphin said:
Thinking about it, Myalgic Encephalomyelitis doesn't get across a cardiovascular angle, including deaths, which is what she is complaining about.
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I don't think she understands that Long Covid is used to cover both the organ damage problems linked to stroke and heart failure and the ME/CFS type problems that are unlikely to have any more to do with organ damage than ordinary ME/CFS.

The people who shout loudest are very rarely the ones with the clearest understanding.
 
She is the person who came up with the term long covid. She just thinks that thrombotic events, cardiac events, strokes aren't getting enough attention. And she doesn't like the label CFS.

Long covid is intentionally a broad category and it's not surprising that this has downsides which are becoming more apparent over time.
 
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Jonathan Edwards said:
I don't think she understands that Long Covid is used to cover both the organ damage problems linked to stroke and heart failure and the ME/CFS type problems that are unlikely to have any more to do with organ damage than ordinary ME/CFS.
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She does understand that as she was the one who invented the term LongCovid with the explicit aim of describing all long-term sequelae.

The problem I have is the lack of demarcation between severe and non-severe outcomes. Those severe outcomes can include heart/lung issues as well as ME/CFS type symptoms. But not merely ticking a few symptom boxes on a followup questionnaire, while still being able to work full time and maintain an active social life.
 
Lots of patients with all sorts of symptoms dislike the label 'chronic fatigue syndrome' being applied to them. I don't think that need be any sort of insult to those already labelled with 'chronic fatigue syndrome'.

I feel as if twitter is a medium that makes it really easy to misunderstand people though, so who knows?
 
Esther12 said:
Lots of patients with all sorts of symptoms dislike the label 'chronic fatigue syndrome' being applied to them.
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Last time I heard, she was saying that she didn't have ME/CFS-type symptoms i.e. the research being quoted isn't saying that *she* has "chronic fatigue syndrome". Indeed, none of the research is saying that everyone with long Covid has "chronic fatigue syndrome".
 
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