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Robert Saunders (aka McMullen) Profile picture
@RobertHMcMullen
Nov 11, 2020 • 6 tweets • 3 min read • Read on X
1) Virtual conference on Supporting Patients Living with #longCovid: healthcareconferencesuk.co.uk/conferences-ma…

Wed 9 December

Speakers include: Dr Clare Gerada, Prof Lynne Turner-Stokes and Professor Trudie Chalder. All prominent advocates of graded exercise therapy (GET) and CBT for ME/CFS.
2) The new NICE draft Guideline on ME/CFS states that patients should not be given GET or CBT as a treatment: nice.org.uk/guidance/GID-N…

#LongHaulers may question whether those who have promoted these treatments for ME should be advising on #LongCovid.
3) Highly recommended reading for anyone with #LongCovid – and anyone with an interest in standards in clinical research.
4) KCL interview with Prof Chalder (a #PACEtrial author) on #LongCovid:
5) Dr Gerada’s promoting graded exercise therapy for ME/CFS (based on a model developed by her husband):
6) Slide from a talk by Prof Tuner-Stokes in which she lists the “secondary gains” of being chronically unwell:

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More from @RobertHMcMullen

Robert Saunders (aka McMullen) Profile picture
Jul 5, 2022
My letter on ME/CFS in the Journal of General Internal Medicine in response to Sharpe et al: link.springer.com/article/10.100…

The history of how GET & CBT have been promoted, prescribed & researched is alarming. Sadly, these mistakes are now affecting people with #LongCovid.

1/
In response, the authors point out that 3 clinicians resigned from the NICE guideline committee before publication. This is true but misleading. NICE’s minutes state: “The whole guideline was agreed by the committee … before there were resignations.”
nice.org.uk/guidance/ng206…

2/
It should also be noted that an FOI revealed that a representative of one the Royal Colleges privately texted the NICE chief executive before the guideline was published to try to persuade her tamper with the independent evidence review: domsalisbury.github.io/mecfs/nice-mec…

3/
Read 5 tweets
Robert Saunders (aka McMullen) Profile picture
Apr 5, 2021
Wow! @GeorgeMonbiot is cited as a cause of #LongCovid (along with support groups & doctors) by Prof Sharpe in a presentation to Swiss Re, a reinsurance company associated with denying payments to people with ME/CFS: swissre.com/dam/jcr:788aa2…

This could be a big own goal.

1/
More on Swiss Re and its connections to Prof Sharpe’s colleague and fellow PACE trial PI Prof Peter White here: virology.ws/2017/08/07/tri… (blog by @davidtuller1).

Looking forward to your next column on Long Covid and ME/CFS, @GeorgeMonbiot.

2/
Despite the fact that his research was rejected by the CDC in 2017 (1) and has been graded as very low quality by NICE (2), PACE trial author Micheal Sharpe also warns about about poor quality research.

1. meassociation.org.uk/2017/07/cdc-re…

2. thesciencebit.net/2020/11/21/no-…

3/
Read 7 tweets
Robert Saunders (aka McMullen) Profile picture
Jan 28, 2021
Dr Clare Gerada talking about #LongCovid on BBC Breakfast this morning: “There is nothing that isn’t made better through exercise. OK. Nothing. No matter what age, what condition, exercise will always improve it.” 1/
Staggering claim from former RCGP chair. Deeply offensive & harmful to millions of people with illnesses that are not made better by exercise. Draft NICE draft guideline for ME/CFS specifically warns against graded exercise. Please correct & apologise @BBCBreakfast @TVNaga01. 2/
For more information on harms of graded exercise for people with ME/CFS (which also applies to people with long covid who meet ME/CFS diagnostic criteria) please read my rapid response to the BMJ: bmj.com/content/371/bm… 3/
Read 11 tweets
Robert Saunders (aka McMullen) Profile picture
Nov 16, 2020
My letter to the BMJ highlighting the harms of graded exercise therapy and PACE-type CBT for people with ME/CFS, and calling on those who have failed patients by promoting ineffective and harmful treatments to acknowledge their mistakes and apologise:
bmj.com/content/371/bm…
There is also an excellent letter by Andrew Devereux-Cook which makes some very good points, including how chronic underinvestment in ME/CFS research may now be impacting on people with #LongCovid. He also highlights the important work of @DecodeMEstudy: bmj.com/content/371/bm…
The BMJ article is available in full on the @MEAssociation website: meassociation.org.uk/2020/11/bmj-ni…
Read 4 tweets

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