LIST OF QUESTIONS FOR MPS
From @ClareCraigPath and Dr Jonathan Engler:
.
1.Why are SARS-CoV-2 antibody levels flat or dropping across all age groups since May if the pandemic is still going?
https://t.co/SAVtoyNbia
#COVID19 letter to #MPs
— Ian James Seale (@IanJamesSeale) November 28, 2020
Pleas Copy/Paste, e-mail and RT.
Drs' Claire Craig FRCPath & Jonathan Engler, have kindly written the following list of 20 questions, which demand answers, especially prior to any vote regarding SARS-Cov-2, Covid-19 restrictions.https://t.co/nj1GIlEUOw
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I held back from commenting overnight to chew it over, but I am still saddened by comments during a presentation I attended yesterday by Prof @trishgreenhalgh & @CIHR_IMHA.
The topic was “LongCovid, Myalgic Encephalomyelitis & More”.
I quote from memory.
1/n
#MECFS #LongCovid
The bulk of Prof @Trishgreenhalgh’s presentation was on the importance of recognising LongCovid patient’s symptoms, and pathways for patients which recognised their condition as real. So far so good.
She was asked about “Post Exertional Malaise”... 2/n
PEM has been reported by many patients, and is the hallmark symptom of ME/CFS, leading many to query whether LongCovid and ME/CFS are similar or have overlapping mechanisms.
@Trishgreenhalgh acknowledged the new @NiceComms advice for LongCovid was planned to complement... 3/n
the ME/CFS guidelines, acknowledging some similarities.
Then it all went wrong.
@TrishGreenhalgh noted the changes to the @NiceComms guidance for ME/CFS, removing support for Graded Exercise Therapy / Cognitive Behavioural Therapy. She noted there is a big debate about this. 4/n
That is correct: The BMJ published Prof Lynne Turner Stokes’ column criticising the change (Prof Turner-Stokes is a key proponent of GET/CBT, and I suspect is known to Prof @TrishGreenhalgh).
https://t.co/0enH8TFPoe
However Prof Greenhalgh then went off-piste.
5/n
The topic was “LongCovid, Myalgic Encephalomyelitis & More”.
I quote from memory.
1/n
#MECFS #LongCovid
Have you registered for IMHA's next webinar on Long-COVID? Guest speaker Professor Trisha Greenhalgh.
— CIHR-IMHA Community (@CIHR_IMHA) January 12, 2021
When? Tomorrow: *Jan 13th.* 12pm ET
A few spots are left, but going fast!
Registration required: https://t.co/T4PbWNA35Y@KarimKhan_IMHA @CIHR_IRSC @trishgreenhalgh pic.twitter.com/xlWKi4QKF1
The bulk of Prof @Trishgreenhalgh’s presentation was on the importance of recognising LongCovid patient’s symptoms, and pathways for patients which recognised their condition as real. So far so good.
She was asked about “Post Exertional Malaise”... 2/n
PEM has been reported by many patients, and is the hallmark symptom of ME/CFS, leading many to query whether LongCovid and ME/CFS are similar or have overlapping mechanisms.
@Trishgreenhalgh acknowledged the new @NiceComms advice for LongCovid was planned to complement... 3/n
the ME/CFS guidelines, acknowledging some similarities.
Then it all went wrong.
@TrishGreenhalgh noted the changes to the @NiceComms guidance for ME/CFS, removing support for Graded Exercise Therapy / Cognitive Behavioural Therapy. She noted there is a big debate about this. 4/n
That is correct: The BMJ published Prof Lynne Turner Stokes’ column criticising the change (Prof Turner-Stokes is a key proponent of GET/CBT, and I suspect is known to Prof @TrishGreenhalgh).
https://t.co/0enH8TFPoe
However Prof Greenhalgh then went off-piste.
5/n
The outrage is not that she fit better. The outrage is that she stated very firmly on national television with no caveat, that there are no conditions not improved by exercise. Many people with viral sequelae have been saying for years that exercise has made them more disabled 1/
And the new draft NICE guidelines for ME/CFS which often has a viral onset specifically say that ME/CFS patients shouldn't do graded exercise. Clare is fully aware of this but still made a sweeping and very firm statement that all conditions are improved by exercise. This 2/
was an active dismissal of the lived experience of hundreds of thousands of patients with viral sequelae. Yes, exercise does help so many conditions. Yes, a very small number of people with an ME/CFS diagnosis are helped by exercise. But the vast majority of people with ME, a 3/
a quintessential post-viral condition, are made worse by exercise. Many have been left wheelchair dependent of bedbound by graded exercise therapy when they could walk before. To dismiss the lived experience of these patients with such a sweeping statement is unethical and 4/
unsafe. Clare has every right to her lived experience. But she can't, and you can't justifiably speak out on favour of listening to lived experience but cherry pick the lived experiences you are going to listen to. Why are the lived experiences of most people with ME dismissed?
Why is it such a source of collective outrage that a person with fatigue following a viral illness gets better?https://t.co/5lcwQBPLU5
— Trisha Greenhalgh \U0001f637 #CovidIsAirborne (@trishgreenhalgh) January 30, 2021
And the new draft NICE guidelines for ME/CFS which often has a viral onset specifically say that ME/CFS patients shouldn't do graded exercise. Clare is fully aware of this but still made a sweeping and very firm statement that all conditions are improved by exercise. This 2/
was an active dismissal of the lived experience of hundreds of thousands of patients with viral sequelae. Yes, exercise does help so many conditions. Yes, a very small number of people with an ME/CFS diagnosis are helped by exercise. But the vast majority of people with ME, a 3/
a quintessential post-viral condition, are made worse by exercise. Many have been left wheelchair dependent of bedbound by graded exercise therapy when they could walk before. To dismiss the lived experience of these patients with such a sweeping statement is unethical and 4/
unsafe. Clare has every right to her lived experience. But she can't, and you can't justifiably speak out on favour of listening to lived experience but cherry pick the lived experiences you are going to listen to. Why are the lived experiences of most people with ME dismissed?