United Kingdom: ME Association news

Professor Findley withdraws as Patron of the ME Association

https://meassociation.org.uk/2021/10/professor-findley-withdraws-as-patron/

 

Mmmm.

 

Perhaps next time the MEA considers inviting a new Patron (and what purpose do they actually serve?) the BoT will consult the membership first.

 

Well done to everyone involved in highlighting what Professor Findlay has been up to. A victory for common sense.

 

TYMES Trust Patrons:

Lord Clement-Jones CBE
Tymes Trust Founder Patron

John Whittingdale OBE, MP
Secretary of State for Culture, Media and Sport

Earl Howe
Parliamentary Under-Secretary of State at the Department of Health

The Countess of Mar
Princess Helena Moutafian MBE
Terry Waite CBE
Shirley Conran OBE

Remembering
Lady Elizabeth Anson, cousin to the Queen, and Dame Barbara Windsor
Patrons of Tymes Trust for many years
Such kind and generous people

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ME Association Patrons:

HRH The Duke of Kent KG GCMG KCVO
Etain, Lady Hagart-Alexander
The Countess of Mar
John Rutter CBE (composer and founder of The Cambridge Singers)
Professor Derek Pheby

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Action for M.E. Patrons:

We are proud to count on support from five Patrons:

Lord Melvyn Bragg
Julie Christie
Prof Anthony J Pinching
Lord David Puttnam CBE
Alan Cook CBE

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25% ME Group Patrons:

Dr. Byron Hyde

 

This may sound petty, but Findley called it "CFS/ME" in his statement. Other issues aside, it is unlikely he would have been very helpful.

 

Hoping everyone affected gets well soon and is okay xx

"The ME Association's Head Office is experiencing difficulties due to staff sickness
The ME Association Head Office is currently experiencing problems because a number of staff members have had to take time off work due to Covid. "

https://meassociation.org.uk/2021/10/delays-at-mea-head-office-due-to-sickness/

 

The ME Association launched a quarterly magazine for healthcare professionals: MEE Medical (ME Essential Medical)

https://meassociation.org.uk/wp-content/uploads/MEE-MEDICAL-MAGAZINE-AUTUMN-2021.pdf

https://meassociation.org.uk/health-care-professionals/

 

"The overview looked at eight Cochrane Reviews, including 51 discrete TENS‐related randomized controlled trials (RCTs) with 2895 participants.[7] With such a large body of evidence one might expect a precise and reliable estimate of the treatment effect of TENS for chronic pain. Rather, the overview found that it was not possible to conclude with confidence whether TENS was beneficial or safe for pain control, disability, health‐related quality of life, or analgesic use."

https://www.s4me.info/threads/edito...again-travers-eccleston-et-al-apr-2020.14901/

"tens" tag

 

"Non-pharmacological interventions aimed at treating pain in people with ME/CFS were also included in the review protocol (for example, TENS), however none were found.", page 138.

https://www.nice.org.uk/guidance/ng206/documents/consultation-comments-and-responses-5

 

https://twitter.com/user/status/1463153337692471297

 

Free Booklet: An ME Association Summary of the New NICE Guideline for ME/CFS

"We are delighted to offer a free booklet that explains the new NICE clinical guideline and how it will affect the service that people with ME/CFS can expect from the NHS and social care in England, Wales, and Northern Ireland.

The booklet features the main clinical recommendations from the guideline which we hope will be effectively implemented by healthcare providers as soon as possible. It has been written by Dr Charles Shepherd, Hon Medical Adviser to the ME Association and Member of the NICE guideline committee (2019 – 2021)."

https://meassociation.org.uk/2022/0...summary-of-the-new-nice-guideline-for-me-cfs/

 

https://twitter.com/user/status/1488132464291811331


This is (rightly) causing some consternation over on twitter A very irresponsible message.
Quite concerned by the lack of explanations about what ME is in the MEA's communications generally, this being another instance of that.

Also, "Grit and determination"? A lot has gone wrong here.

 

There is a caveat at the bottom of the page linked too

But I am concerned that this is nowhere near prominent or clear enough, as such activity involving a fixed amount of exercise everyday regardless, is potentially the worst approach to activity someone with ME could take.

Further it is likely to be an impossible harmful goal for any one with anything but very mild ME.

 

Does anyone happen to have the most recent Annual/Financial/Trustee Report from the MEA? It's not on their website.

 

I don't but does the details here help?
https://register-of-charities.chari...rch/-/charity-details/801279/charity-overview

 

Thanks Andy. Got that but was hoping to find their full published report analogous to AfME's: https://www.actionforme.org.uk/uploads/pdfs/Action-for-ME-annual-report-2020-2021-updated.pdf