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

no she doesn't, and seems to equate it to 'chronic fatigue', as per most doctors particularly in the UK.
But later in the thread does seem to acknowledge that a lot of pwME are only trying to warn post-covid sufferers of what *might* ensue.
I imagine she is possibly also unaware of severe/very severe ME patients.......so come Aug
https://www.s4me.info/threads/severe-m-e-day-8th-of-august-2020.15814/

she might better understand the warnings.

 

Note she’s an archaeologist not a medical doctor.

 

She was on BBC 5 live breakfast on July 6 talking about it https://twitter.com/user/status/1280838173023768577

 

https://twitter.com/user/status/1280810821745065984


Question asked:
Department of Health and Social Care

70531
To ask the Secretary of State for Health and Social Care, whether the NICE guidance on chronic fatigue syndrome/myalgic encephalomyelitis will be updated to remove graded exercise in response to the increasing numbers of patients with fatigue symptoms after a diagnosis of covid-19.

ETA: Also posted in the thread UK House of Lords/House of Commons Questions here

 

Just had to share that I just had a Patient Safety meeting with 4 others that work as bureaucrats in health care, and 2 of them had no clue at all that some COVID patients are not recovering -- I tried, but did not succeed, to hide my shock that people in their positions could be so clueless.

 

Good! Judging by the number of articles posted on Facebook, there's been enough publicity in the mainstream media to have attracted the attention of people with no prior knowledge of post-viral syndromes, or personal experience of Covid-19.

When healthcare is their actual paid job, there's absolutely no excuse...

 

Title : Why I'm sceptical about the NHS's coronavirus recovery service

Subtitle : I’ve seen firsthand how years of underfunding have left our health service struggling to treat long-term conditions

Author : Frances Ryan

Link : https://www.theguardian.com/commentisfree/2020/jul/08/coronavirus-recovery-service-nhs-underfunding

 

For that reason I think they should be left alone for now, this isn't something that can be argued. They expect that medicine will help them and us warning them about the bulldozer heading their way is demoralizing.

Nobody likes Cassandras. Can't really blame them.

 

Ironically the doctors seem more open to it. Because they know what they would write down if they saw themselves as patients.

 

Right problem but I'm surprised Ryan suggests the solution goes through the failed BPS "fatigue" clinics. They are as much part of the problem as anything else. As designed the system is unable to meet any of the challenges, especially the specific complications from strokes and organ damage that will be easily missed with any mental health-first approach. Dealing with this is fundamentally incompatible with the entire BPS/MUS/FND system that has captured medicine in the UK and other countries, it requires a fundamental rethink and a dismantling of the conversion disorder ideology before anything useful can happen.

Those services are already available to ME patients. They're just uselessly incompetent at doing anything more than a 5 minutes explanation can cover.

 

https://twitter.com/user/status/1280543174872698887

 

I wonder whether this should go, or at least be copied, here?

https://www.s4me.info/threads/uk-house-of-lords-house-of-commons-questions.707/page-20

 

Good idea! I'll copy it

 

Paywalled article in a Swedish newspaper:

SvD: Långtidssjuka ifrågasätts – ”varit ett helvete”
https://www.svd.se/langtidssjuka-ifragasatts--varit-ett-helvete

It seems to be a translated version of an article by Ed Yong, originally published in the Atlantic.

https://twitter.com/user/status/1280942292501757952


Here's their Facebook post, in case you want to read the comments

 

NewStatesman - Phil Whitaker: For some sufferers, Covid-19 doesn't come with an end-by date - it just goes on and on

As for #LongCovid sufferers like Xanthe and Paulo, it feels, intuitively, as though their immune response is at stalemate: neither clearing the virus nor being driven down the hyperinflammatory pathway. There are other possibilities, though, notably that the original infection has been cleared, but the immune response continues to be triggered by factors as yet unknown. Tantalisingly, what I hope will be an eventual research effort into #LongCovid patients may shed some light on other ill-understood conditions associated with a viral trigger, most notably chronic fatigue syndrome/myalgic encephalitis (CFS/ME).

 

@Robert 1973

I'm guessing this post in the New Scientist is also you(?)

https://www.newscientist.com/letter...-impacts-possible-for-those-who-had-covid-19/

 

https://twitter.com/user/status/1280930833482895360

 

How long before they come up with symptoms being perpetuated by personal prior vulnerability? Has no-one told them yet. They should know about these things at John Hopkins.

 

Paul Garner and the founder of Body Politics on long haul Covid, mentioning of ME "CFS" several times, recommend pacing

https://www.youtube.com/watch?v=q_GT96xRlbQ

 

I don't know what Avi Nath had in mind when he was tasked with the ME NIH portfolio, but I'm fairly sure this kind of thing here would never have crossed in mind if he had a thousand years to think of all the possibilities.