United Kingdom: ME Association news

https://twitter.com/user/status/1412741991570546692

 

Announcing The Howes Goudsmit Prize for Severe ME Research

"The ME Association is pleased to announce the establishment of the Howes Goudsmit Prize for Severe ME research. This award has been created because of a very generous donation from Dr Ellen Goudsmit, a disabled scientist who helped to create awareness of ME in both the UK and the Netherlands and who has studied ME for over 40 years.

The prize, which will amount to £5,000 per year for the next ten years, has been named The Howes Goudsmit Prize after Mrs Sandra Howes and the late Mrs Felicie Goudsmit. Mrs Howes had Severe ME, was a board member of the ME Association, and spent years writing about the disease. Mrs Goudsmit was a carer and as such, became very familiar with the many challenges of dealing with severe disability."

https://meassociation.org.uk/2021/07/announcing-the-howes-goudsmit-prize-for-severe-me-research/

 

The Big Give Christmas Challenge – help us raise more funds for biomedical research

"The ME Association is looking out for some amazing supporters who are prepared to pledge a minimum of £100 to set up the matched funding pot for our Big Give Christmas Challenge.

This year we’re aiming high with another ‘Double Your Donation’ appeal.

We want to raise £50,000 to top up our Ramsay Research Fund, where fundraising fell away dramatically during the pandemic. Some ground-breaking research had to be put on hold because supporters couldn’t get out to take part in mass participation events.

We are now in the ‘pledging phase’ of the campaign when we ask people to help us build up the matched funding pot before the public appeal starts on at midday ‘Giving Tuesday’ (30th November).

The pledge will be for a minimum of £100 – or any multiples of that. Please pledge what you know you will be able to afford."

https://meassociation.org.uk/2021/0...-us-raise-more-funds-for-biomedical-research/

 

The MEA newsletter arrived in my Inbox today (I'm not a member but subscribe to receive it).

It states:

One of the reasons I never joined them in the past was I felt they seemed more for mild patients and possibly those with the short term, self-limiting, post viral fatigue type syndrome. I always felt alienated because of this. It seems that after their brief focus on severe ME, they are back to looking to promote the 'substantial improvement' stories. How representative of the ME population are these? Why do they think these stories are needed to give patients 'hope' when the skew is already towards the milder end of the ME severity spectrum (i.e. in the focus of the existing 2007 guidelines and NHS ''fatigue and pain' services)? To me the imbalance needs to be addressed the other way, towards getting the long term (decades for many of us) nature of ME recognised.

Edit: How meaningful is a 'before and after' image for most ME sufferers? The difference for me so far would be that I have aged 30 years...

 

This is their update on the NICE guidelines, for members interest here (they are under the same confidentiality agreement as S4ME, so understandably can't say much):

 

I can't see anything about the appointment of their new patron in the newsletter, but might have missed something.

 

It appears from that is that a statement is needed from someone as to when the confidentiality agreement expires. Is it at the conclusion of the meeting? Is it when NICE announces its decision taking into account the discussion at the meeting? Why has this not been publicised?

 

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.

 

Copied from the Long Covid thread.