United Kingdom: ME Association news

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/
 
News here.
https://meassociation.org.uk/2021/10/welcome-to-our-new-mea-patron-professor-leslie-findley/

We are pleased to announce that Professor Leslie Findley has agreed to become a Patron of the ME Association.
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He has been mentioned as a supporter of the
https://measussex.org.uk/about-us/medical-advisors/

A link to this transcript of an interview has been posted on Twitter.
https://meagenda.wordpress.com/category/professor-findley/

I'm not sure an organization for ME should have him involved.

Subsequent discussion of this issue is on this thread:
United Kingdom: ME Association governance issues
 
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The MEA newsletter arrived in my Inbox today (I'm not a member but subscribe to receive it).

It states:

Feedback

We welcome all feedback. If you have something to say about what we do or think we can do better then please let us know. In particular we are focusing on:
  • Please can you share your experiences with ME/CFS especially if you have made a considerable improvement, as we'd really like to feature you on our website blogs. If you are happy to share your story with our followers, please do email a short story (400- 500 words) including a before and after image where possible.
  • We have relaunched the Real M.E. campaign, and are delighted by the response. We invite you to send in photos and short stories to provide some context. We want to show the world that ME/CFS is indiscriminate and can affect people of any age, from all walks of life, and can strike at any time. We also want to steer the media away from those awful and unrepresentative stock images. Your contributions will remain anonymous and we'll use your photos in the literatures we produce, the website, social media, and the members magazine.
Please send your contributions to: Feedback@meassociation.org.uk
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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...
 
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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):

The NICE Clinical Guideline ME/CFS

As we await the roundtable meeting with NICE and other stakeholders (on Monday 18th October), I want provide some measure of reassurance.

The ME Association and other members of Forward-ME want nothing more than to see these essential recommendations published and implemented across the NHS and social care services. We do not want any further delay and we don't want to see any additional changes made.

The final draft had been through a very comprehensive three-year process that met NICE’s own protocols and about which every stakeholder was consulted. We remain hopeful that this meeting will be about practical implementation of that guideline and nothing else.

Dr Shepherd (Hon. Medical Adviser to the MEA) recently held a preliminary discussion with NICE and we were reassured by what they had to say. He will be representing the charity at the roundtable meeting, and – once the confidentiality agreement has expired – we will be able to say more and hopefully announce when publication can be expected.
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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?
 
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

Welcome to the first issue of MEE Medical (ME Essential Medical), the ME Association’s new quarterly magazine for healthcare professionals.

It contains all the medical and research features from the latest issue of ME Essential magazine that we think you will be most interested in reading.

Publication of the important NICE clinical guideline – that had been reviewed over 4 years by a committee of experts, clinicians, and lay members, and was subject to extensive stakeholder consultation – was expected on 18 August but was withdrawn by NICE at the last minute.

The new guideline had been widely welcomed by the patient community and provided a totally new framework for health professionals on how to diagnose and manage this medical condition. The latest news can be found on the ME Association website. We hope to see final publication without too much more delay and we will include a summary of it in the next magazine.

In this issue is a new ME Association information leaflet covering the management of hypersensitivities that quite often occur in ME/CFS – including alcohol, light, pain, temperature, and touch.

We hear from Dr Peter Gladwell at the Bristol ME/CFS service about the use of TENS machines for pain relief, selected Q&As from our regular ‘Ask the Doctor’ feature covering questions on fluctuating medical conditions, symptoms, and triggers.

Meet the Scientist has an interview with Dr Mark Zinn, who discusses Central Autonomic Network Disturbance, and we feature an article from Phil Prydderch who describes his experience of having severe ME/CFS.

Kind regards,

Dr Charles Shepherd, Hon Medical Adviser, ME Association
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https://meassociation.org.uk/health-care-professionals/
 
It's disappointing that everyone has fought so hard to try to remove unevidenced ME/CFS treatments only to have the MEA actively promoting another one. The evidence for TENS is extremely weak. Why would Dr Shepherd allow this?

e.g. Pain Science
To date, there isn’t much reason to think that any of them are actually effective for pain. A 2015 British Medical Journal editorial ruled “not recommended; early promise is fading fast as trial methods improve” (commenting on a rare good quality trial9). In 2018,the Cochrane Database of Systematic Reviews just declared the evidence to be pathetic — not enough good studies like Luedtke et al. But the evidence so far is already following a classic pattern: slightly promising results from sloppy studies, discouraging results from the better ones that follow. The null hypothesis will probably rule the day, as it usually does.
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But we have Dr Peter Gladwell in this article urging doctors to
Be persistent! Sometimes patients need to practice with TENS for a few weeks before they feel sure that they are getting the benefits. Changing the settings and changing strategies can help you work out whether TENS can work for you.
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He says
but recent research shows that it is possible to select treatment areas such as the back of the neck and the lower back, to see if the TENS machine can offer an overall, systemic benefit.
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Hutan said:
The evidence for TENS is extremely weak.
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"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
 
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/
 


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.
 
I agree this is completely the wrong message for the MEA to put out. It's difficult because you don't want to be negative to someone young who has already done a challenge, but I think the message by Neil Riley is much too mild and the whole tone of the article is wrong.

I don't want any ME organisation supporting fundraisers based on physical challenges except the challenge to make sure you get enough rest. I would go so far as to say ME organisations should protect their sick members by refusing to publicise or support or even accept money raised from sponsored challenges that involve pwME adding extra physical activity.
 
There is a caveat at the bottom of the page linked too

IMPORTANT NOTICE: For people with ME/CFS who are considering taking on fundraising where there is a physical challenge, please read this important note from our Chairman, Neil Riley:
https://meassociation.org.uk/fundraising-for-the-me-association-important-notice/
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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.
 
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