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Reading on, it's far from clear she has a good understanding of ME.
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.
 
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.
 


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
 
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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.
 
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

On Sunday, NHS England announced plans to create a Covid-19 recovery service for those suffering long-term symptoms of the virus. Patients will receive a face-to-face consultation with a rehabilitation team, a personalised treatment package, and 12 weeks of online support. The service will also include mental health care, such as access to a psychologist via an online hub.

increasingly hearing accounts of “long haulers” – people who may have experienced just a mild version of the illness but have been left with breathing problems, fatigue, or other debilitating symptoms. Research from King’s College London shows as many as one in 20 Covid-19 patients experience long-term symptoms for at least a month, sometimes longer. Maastricht University found nearly 88% of patients surveyed reported persistent intense fatigue, while almost three out of four had continued shortness of breath. Others report having to take several months off work or even being bed bound.

Anyone who has needed long-term care from the NHS, however, will have listened to the announcement with some scepticism. The truth is, for all its strengths, the NHS has long struggled with treating chronic conditions. Before the pandemic, millions of people with chronic illnesses were silently suffering, often forced to navigate life-changing symptoms with highly limited medical support. I developed a type of post-viral fatigue from the flu two years ago and have received little long-term care from the NHS, despite struggling to get out of bed. As I write this, I’m waiting for a phone call to get me on a waiting list for a phone call.
...
 
To be fair, if I was in her shoes, I'd be proclaiming that what ailed me was nothing like ME too given the way doctors treat people with ME.
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.
 
At least a lot of doctors seem to be having to change their views on ME, and recognising the multiplicity of symptoms.


There are also enough doctors in the LongCovid group willing to learn from ME without assuming that they are the same.
Ironically the doctors seem more open to it. Because they know what they would write down if they saw themselves as patients.
 
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
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.
 


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.

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
 
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.
Google Translate said:
Long-term illness is questioned - "It's been Hell"

Some covid-19 patients do not recover for months - and their symptoms are similar to those of ME/CFS. The coronavirus risks causing an epidemic of the kind of unexplained conditions that are dismissed as "women's diseases", writes the American science journalist Ed Yong.

Day 1 for Vonny LeClerc was March 16th.

When she came home from work as a journalist in Glasgow, Scotland, she noticed that she was shivering and blushing at the same time. A few hours earlier, the British Prime Minister Boris Johnson had ordered strict restrictions on social distance, in order to prevent the spread of sars-cov-2. During the days that followed, she had a cough, chest pain, joint pain and a tingling sensation in the skin.


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

 
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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(?)
Other impacts possible for those who had covid-19

Published 8 July 2020

From Robert Saunders, Balcombe, West Sussex, UK

In your article “The enduring grip of covid-19”, Paul Garner says his symptoms “are the same as chronic fatigue syndrome, with one difference – CFS is defined as not having a cause” (27 June, p 34).

That isn’t accurate. Because there are currently no diagnostic tests for CFS, also known as myalgic encephalomyelitis (ME), other possible causes of symptoms must be excluded before a diagnosis can be made.

However, it is well established that this illness can be triggered by infections such as the Epstein-Barr virus, and it is possible that covid-19 could lead to ME/CFS in certain cases.
https://www.newscientist.com/letter...-impacts-possible-for-those-who-had-covid-19/
:thumbsup:
 
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