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

https://twitter.com/user/status/1313116853615710214

 

The autonomic nervous system regulates the function of the body’s internal organs, such as heart rate, blood pressure, digestion, and body temperature. People with an autonomic disorder have trouble regulating one or more of these systems, which can result in fainting, lightheadedness, fluctuating blood pressure, and other symptoms.

So saying that pwME don't experience xyz symptoms isn't helpful for anyone trying to move forward.

 

I don't understand what Long Covid symptom she or others may have that can be treated by a drug therapy (trying to follow her argument) that would remain untreated if lumped in with ME.

These would have to be things that no person with ME ever had then?

 

I am underwhelmed by Chew-Graham's comments and frankly doubt her sincerity. This is what she built for us, knowingly and willfully, no surprise there. This is the precise model she has built. She has seen the same consequences play out for years and saw no issue there. If she meant those words at all she would have admitted her failure with us. She did not.

I saw a comment the other day that I think reflects on this, that the problem with talking about health care being a human right, the problem is that not everyone's humanity is recognized. Chew-Graham has never recognized ours, in fact has personally contributed to more death and suffering than she can imagine, and continues to insult us with those ignorant comments about her role in this disaster. Those 20 COVID patients, they are a small blip in all that death and suffering she caused. It is only that she recognizes humanity in them that it affected her. But given the distribution of number of pwME affected vs. the number of BPS ideologues, she personally has so many more corpses on her conscience and gallons of blood on her hands. Empty words from hollow souls.

That other guy is a complete jackass, however. To actually defend PACE and GET given everything. EBM is far too interpretable, too open to opinionating. It has shown to be far more harmful than the meager benefits it may provide, which no one can actually quantify because the whole process is rotten.

 

Even more so by the botched response. As usual, most of the harm is not caused by the illness itself but by the complete collapse of medical expertise in the face of an old problem that medicine has always dismissed as laughable, impossible, with casual disregard for consequences, even responding with mockery to those consequences. This is a unique situation in all the fields of scientific expertise, no one has failed worse at their given subject of expertise in all of human history. Willful ignorance is not a credible excuse.

It's good that the burden is recognized, but there is little hope this damage will be mitigated until then. All the mistakes are being committed again. This is what makes it all so much worse. Like firefighters bringing fuel to a fire. If it wasn't for the very particular circumstances of the Internet allowing for rapid organization and communication, medicine would have completely missed this again, would have mocked the silly people who convinced themselves a virus gave them organ damage, or what feels like it.

Still no sight of any change in a positive direction. Medicine is still barely catching up to the very first known facts. What an incredible failure.

 

I wouldn't trust her

 

I personally would like to see research projects with me folks and covid folks (who have no explanation for their symptoms and look ME-ish) but with the groups results kept separate, initially, to see what the differences and similarities are. I think it would very quickly tell us the situation. ME folks would be involved in more funded studies and covid folks would find out if their post viral symptoms are looking identical to M.E.

 

I understand your perspective. I tend to be agnostic on motivations, at least publicly, whatever I might think. Professor Chew-Graham comes across as very sincere and thoughtful. Is she in fact? That's not my call. I can point out the contradictions and others can figure it out.

Added: Many people also compartmentalize very well. They can be completely sincere and empathic in one mode but blinded and unaware in others. I think it's probably very complex.

 

I suspect that we are also prone to breathlessness but recognise the risks and pace to avoid them. It takes several years experience.

 

I'm hoping to be surprised. But I'm assuming that Lucy will pull the football every time. It's a very reliable assumption.

 

I've always been slightly out of breath for years, mild air hunger, but I hardly bother because it's just at that level where it's barely noticeable. Which seems to be on a different level from COVID, where it is severe and we know can degrade significantly. Definitely no waking up at night gasping for air. I never checked my 02sat, never knew it was something to check for. So many things we don't know simply because nobody checked.

I get winded out simply doing light chores almost immediately, but I have no energy to keep doing them anyway so I rarely reach that point where I am gasping from air, just slightly breathless for a few minutes. So since I have other constant limitations, I don't think I've ever bothered mentioning it, I hit other limits first. Not that anyone has ever done more than glance at my list of symptoms, another reason not to bother mentioning something that is secondary.

We badly need a few studies, or a large high-quality one, about symptoms, pretty much like the Body Politic one: listing many minor ones but also allowing for write-ins. Broadest coverage possible, all of them, in-depth. I don't think that's been done since Ramsey and that's seriously absurd. This obsession with limiting everything to fatigue and ignoring all other symptoms have created a space of total ignorance.

 

https://twitter.com/user/status/1313071355034828804

 

It was always going to go down this route.
Keeps reputations and careers intact .

 

Long-term Health Consequences of COVID-19

No mentioning of ME or "CFS" though
Edit: it is, see next comment

 

Long-term Health Consequences of COVID-19

https://jamanetwork.com/journals/jama/fullarticle/2771581

Under "Neurological":

Under "Emotional health and well-being", because reasons:

Because illness malaise and exhaustion are clearly emotional health. Way, way too much opinionating going on in medicine. This system is so dysfunctional, no wonder it produces such horrible outcomes when such a poor statement of opinion can make its way through peer review at one of the leading medical journals in the world.

 

Ah, I didn't read the "emotional health" part thoroughly. Didn't expect ME "CFS" there...well

 

Dysautonomia is clearly not a thing then

 

Pretty disappointing it got no mention given how prevalent it is. Exertion intolerance got no mention either, which is frankly absurd at this point.

 

https://www.independent.ie/world-ne...-have-lasting-effects-on-health-39526270.html

It can also be read here:
https://www.pressreader.com/ireland/sunday-independent-ireland/20200913/281565178176195

ME/CFS doesn't get a mention, but here are some extracts:
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https://www.huffingtonpost.co.uk/en...emic_uk_5f7ad1e6c5b64b480ab05d55?guccounter=1

The prevalences above are larger than another quote from him while back which gave a prevalence of 0.5% among those who had Covid.

The piece also has a 6-minute video of short snippets of a UK woman with long Covid describing her life. She mentions at one stage that her GP don't know what to do with her and is considering sending her to a chronic fatigue clinic.