Re @bmj_latest article last week ‘moving beyond controversy’ #LongCovid & #MECFS
Article that imho largely added to & repeated controversy & ignored much recent research
For which I was interviewed & quoted
2/6 I didnt see or review article prior to publication, I solely approved my quote.
During the lengthy interview, on ‘the debate over exercise & what should be happening’ I shared up to date referenced evidence of science behind PEM, potential harms of GET, debunking of PACE
5/6 For a detailed look at how biomedical research into help for #LongCovid can build on what is already known & identified in other #PostViral syndromes inc #ME#MECFS
By biomedical experts in the field please see this recent paper by Komaroff & Lipkin
6/6 The irony of the main article linking to a @bmj_latest opinion stating:
‘But power imbalances remain, esp. in creation of health knowledge, where prominent names in medicine seem to get easy access to the media’ blogs.bmj.com/bmj/2021/06/23…
By @CizCG; @DocAmali; @FrancesorFran
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ADVICE FOR #LongCovid
There IS good advice available to help with #LongCovid #postviral#ME fatigue symptoms
There r also Snake oil salesman & opportunists looking to make money from your ill health
I was asked to collate some resources & help
PLEASE SHARE & ADD TO THREAD👇 1/6
Meassociation.org.uk/2020/11/me-ass…
Free leaflets, including comprehensive summary of latest advice & guidance re rest/pace (see photo)
Also see their advice leaflet re activity management & pacing (£1)
Rcot.co.uk/conserving-ene…
(Royal college of Occupational therapists)
Info & details re The 3 Ps principle (Pace, Plan and Prioritise)
Learning to pace, plan and prioritise your daily activities will help you to save energy.
Dear @PaulGarnerWoof as a doctor myself, who’s been on same journey, it’s been interesting to read the evolution of your thoughts on experiencing #Covid_19 viral/postviral fatigue & then on Sx experienced by those who develop #ME/CFS . People who are so often wrongly disbelieved.
@PaulGarnerWoof to read u say,
“I am reading materials about pacing and CFS/ME and listening to the CFS/ME community. I am taken aback that doctors have been so dismissive of what these patients have been saying for so long” & to hear youve spoken to Charles Shepherd too is great
@PaulGarnerWoof so much work is being done by charities & individuals to advocate for patients but also to teach, educate & convince many doctors that these symptoms are REAL, debilitating & MUST be believed & correctly advised & managed. @MEAssociation@MEActNet@actionforme