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15 Oct, 5 tweets, 2 min read
Hi @theJeremyVine,

You made a panorama programme in 2010 about Lynn Gilderdale a patient with Severe ME who died by suicide.

Lynne was made worse by Graded Exercise which is currently recommended by the 2007 NICE 2007 Guideline for ME/CFS. Image
NICE were due to remove Graded Exercise on 18 August but went against their own rigouous process and stopped publication a few hours before after pressure from parts of the medical establishment.

onthewight.com/delay-on-new-g…
NICE spent 3yrs reviewing the evidence and found the quality was not good enough to recommend Graded Exercise and that it is potentially harmful. Over 50% of patients report that Graded Exercise makes them worse. Many patients have been made significantly more disabled.
This thread of explainer videos (with clips from experts, MPs and patients) outlines some of the reasons why NICE were going to drop Graded Exercise and the devastating impact it has had on patients over the last few decades.

NICE are holding a roundtable on 18th October which is outside their strict process for guideline publication.

An ME patient has also been awarded legal aid to potentially take NICE to court.

Could you please cover this on one of your shows next week?

inews.co.uk/news/health/me…

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More from @ABrokenBattery

Adam Profile picture
17 Oct
🧵Diagnostic Criteria and NICE downgrading evidence explainer.

NICE have received criticism about the diagnostic criteria they chose and that studies have been inappropriately downgraded. This will be discussed at tomorrow's roundtable. Image
The hallmark symptom of ME/CFS is Post Exertional Malaise (PEM), even minimal exertion can cause a flare in symptoms and a reduction in physical capability (a crash) that can last for days, weeks or even months.
There are several diagnostic criteria for ME/CFS. PEM is widely acknowledged in specialist practice as being a characteristic feature. However, not all diagnostic criteria require PEM as mandatory which leaves them open to include people with other fatigue-related conditions.
Read 12 tweets
Adam Profile picture
29 Aug
Thread 🧵

After an extensive 3 year review NICE were going to stop recommending Graded Exercise for ME/CFS, due to lack of evidence and possible harm. The day before it was due NICE decided to halt publication after medical bodies were refusing to endorse it.
This thread of updated explainer videos (with clips from experts, MPs and patients) outlines some of the reasons why NICE we're going to drop Graded Exercise and the devastating impact it has had on patients over the last few decades.
The hallmark symptom of ME/CFS is: even minimal exertion can cause a flare in symptoms and a reduction in physical capability (a crash) that can last for days/weeks/months. 

The 2007 guideline which included Graded Exercise "does not fit" with patient experience - Dr Muirhead
Read 12 tweets
Adam Profile picture
5 Aug
Clare Gerada trying to influence Scottish Guidelines in 2009.

Letter written in response to a document published by Action for ME and NHS Scotland
"This document takes an extremely partisan review of the scientific evidence... In my view, following these guide-
lines risks harm to patients. The fact that NHS Scotland appears to have endorsed it is worrying and represents a major departure from evidence based medicine."
"The introduction presents a very negative picture of the illness as neurological and permanent. This does
not apply to the vast majority of people seen in medical practice with chronic fatigue syndrome and is likely to lead to alarm and therapeutic nihilism."
Read 9 tweets
Adam Profile picture
3 Aug
More info from the BMJ

"The departures suggest divisions within the committee over the guideline’s final content, which is an update on 2007 guidance on diagnosing and managing ME/CFS. Three have resigned, and one [Charles] has been removed by NICE."

bmj.com/content/374/bm…
The three are

Michael Beadsworth, a consultant in infectious diseases, Liverpool

Gabrielle Murphy, clinical lead of the fatigue service at the Royal Free

Joanne Bond-Kendall, senior physiotherapist at the ME/CFS service in.
Of course Garner was asked to comment "These resignations can only mean a critical breakdown in the methods for formulating the recommendations. Normally areas of disagreement are solved by formal consensus methods, voting, or informally. That is what the panel is for: to agree"
Read 4 tweets
Adam Profile picture
24 May
Trudie Chalder (PACE trial) is training health professionals on Long Covid. Describes Post Exertional Malaise as "Health anxiety" and an "Extreme behavioural response" states "Exercise is clearly not damaging" and recommends "Increasing exercise"
#LongCovid #MECFS
Long Covid problems with exercise
jospt.org/doi/full/10.25…

Exercise & ME/CFS - lessons for Long Covid (inc PACE trial)
healthaffairs.org/doi/10.1377/hb…

Long Covid overlaps with ME/CFS video - Why exercise is harmful with testimony from harmed patient
Trudie Chalder also misrepresented one of her studies in her presentation by missing out the 12 month follow up data. Including it would have shown no significant difference.
Read 5 tweets
Adam Profile picture
15 Apr
Thread of clips from Michael Sharpe's retirement interview on the Today programme - BBC Radio 4 in 2019.

He describes "A small group of campaigners."

At the time over 80 charities (almost all of them) and 100 academics signed an open letter calling for PACE to be reanalyzed.
He claims that campaigners "stalk researchers" and mentions "threats of violence"

When QMUL refused to release the PACE data it went to tribunal. A witness compared ME/CFS activists to animal rights groups and claimed there were serious risks of violence.
However, the tribunal concluded that "It was clear that his assessment was "grossly exaggerated and the only actual evidence was that an individual at a seminar had heckled Professor Chalder”
Read 8 tweets

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