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

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John Mac said:
Opinion Coronavirus
America's healthcare system will struggle to deal with Covid 'long-haulers'
Jennifer Lutz and Richard Carmona

The US already has sky-high rates of chronic illness. Now comes a wave of Covid patients who never seem to fully recover


My bolding

https://www.theguardian.com/comment...healthcare-system-coronavirus-covid-long-haul
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This is true of the US health care system. It is also true of every health care system, because the flaws are in medicine itself. Countries that are growing adoption of the MUS model, like Norway and Denmark, will likely fare even worse precisely because of this. This isn't an issue of how the health care system is organized, the very expertise responsible for the issue has completely failed at understanding the issue. Politicians cannot build a health care system adapted to real needs when the very profession advising on those needs has never attempted to understand them.

Until this is recognized not much progress will be made.
 
Cheshire said:
I'm a consultant in infectious diseases. 'Long Covid' is anything but a mild illness




Hummmm, it doesn't work for "post viral-fatigue" either...

https://www.theguardian.com/comment...ild-illness-seriously-debilitated-new-clinics
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The one thing I realised early on was that pacing was vital.
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So did we all. We even said so for decades. We were attacked for it, demonized. Decades of failure crashing all at once.

Now take a look at the NICE LC guidelines. No PEM. No pacing. Door is fully open for GET and CBT. Not even a reference to the ME guidelines that fix those, it's "out of scope". And those changes are strongly opposed by political forces. It would be great to make this physician aware of those things because the very things he wants to happen are happening, just clearly without his awareness.
 
Amw66 said:
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This article, quite frankly, is embarrassing to the author and the medical profession (if they are actually capable of embarrassment).

I tried to steadily increase the amount I was exercising – but suddenly in mid-June I started to experience severe post-exertional fatigue. It could happen on a short walk or it could be while cooking dinner. It was completely unpredictable.
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This demonstrates is that doctors are so poorly educated about ME/CFS that they can't recognise it even when they have it themselves.

Graded exercise, an approach that has been used to manage patients with other post-viral fatigue, wasn’t working; in fact it seemed to be detrimental and could leave me floored for days. The one thing I realised early on was that pacing was vital.
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But one thing has been evident for some time: this is not a straightforward post-viral syndrome, and requires a different approach.
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Clearly she has never spoken with (or listened to) a patient with ME/CFS.

The level of ignorance here is breathtaking. I'm speechless.

 
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Art Vandelay said:
This demonstrates is that doctors are so poorly educated about ME/CFS that they can't recognise it even when they have it themselves.
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Apart from the complete lack of knowledge about PVFS/ME/CFS, and the assumption that CBT/GET are the correct treatments, which is shocking but not surprising in a doctor who doesn't treat or meet pwME, I thought this paragraph was interesting. She is asking for exactly what we have asked for in terms of care provision as we have in our NICE submission, namely that the point of contact should be a nurse specialist.

Crucially, like many multi-disciplinary teams for chronic conditions, there should be a single point of contact with a nurse specialist who coordinates different team members, and helps direct access to other services. A comprehensive one-stop shop is vital for people who can’t manage multiple visits to different specialists.
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As an infectious disease doc I imagine she has seen PVFS and ME/CFS patients in her career. Based on her statements here about exercise, she probably fobbed them off with terrible advice and now that she has PEM herself she still doesn’t grasp what’s going on, she is still dismissing others. Disturbing.
 
Sid said:
As an infectious disease doc I imagine she has seen PVFS and ME/CFS patients in her career. Based on her statements here about exercise, she probably fobbed them off with terrible advice and now that she has PEM herself she still doesn’t grasp what’s going on, she is still dismissing others. Disturbing.
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It's like the pathophysiology of ME was just some midcentury campfire story.
 
chrisb said:
It is a well known fact, at least since 1959, that long term sequelae of infectious diseases are the preserve of psychiatrists. Are they not all caused, or perpetuated by, prior psychochological vulnerability?
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From what I gather, if the victim has an MD after their name, then their postviral syndrome is real and needs urgent NIH funding. If the victim is just some pleb, then that person has a psychosomatic issue and needs a gym membership.
 
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