United Kingdom: ME Association news

Looks like whoever is moderating MEA Facebook today has now stripped off all the comments, including Colin Barton's

https://www.facebook.com/1000643212...j1butwmCyXEYKcSn7trRmDR4FGudXF27ZtGl/?app=fbl

The MEA - censoring criticism on social media since 2002.

 

they have a number of projects
Current projects

sorry I've not been following this thread but, why don't the MEA liaise with MERUK on research??

 

Here are the research studies ME Research UK are currently funding:
https://www.meresearch.org.uk/2023-24-our-charity-year-in-review-investing/

It includes

• Project 66 (offered prior to 31st Oct 2023 and accepted post 1st November 2023).
  Prof. Fatima Labeed, University of Surrey, UK, “The Electrophysiology of ME/CFS: Development of an Electrical Model for Exploration and Diagnosis.” (joint grant with the ME Association).

 

Something I mentioned before, but didn't go into much detail about, were the problems with the patient leaflets on MEA's website. While they are higher quality than those put out by many other organisations, and there is lots of sensible and practical advice, there are plenty of occasions where what is written is just not sound, and there are a few more significant errors as well. I haven't been able to do more than skim, so just a few random examples:

There are a number of occasions where "supplements" are recommended, such as:

and similar content in this Treatment of ME/CFS document. There are a number of questionable treatment claims in this leaflet on pain management, e.g.

There are epidemiological statements that are wrong, too, such as:

from this leaflet. There's some bunk about neuroinflammation and coenzyme Q10 in this cognitive-dysfunction leaflet; and plenty of simply wrong claims made in this POTS leaflet. There are the claims I mentioned on the other thread about pseudoseizures. There is also incorrect information about some medications, e.g. in this pain management leaflet:

No it doesn't! The gabapentinoids are structurally related to GABA but are thought to act by their effects on voltage-dependent calcium channels (specifically as α2δ ligands); they do not act as GABA agonists or positive allosteric modulators.

If anyone with more energy than I have would like to review them the leaflets are all now available for download here; I'm sure anyone who does will find many more examples of things that require revision:

https://meassociation.org.uk/free-literature-downloads/

 

These matters would be great for @ME/CFS Skeptic to cover (if not done so already)

 

It may have been posted here but in case not the MEA are advertising for a part time Communications Office

see https://meassociation.org.uk/2025/01/situations-vacant-communications-officer/?

 

The current Communications Officer, Kelly,

https://meassociation.org.uk/mea-team/

"joined the MEA Communications team in 2024, working on social media and the MEA website."

"has a background in Digital Marketing and has worked with both businesses and social enterprises to develop and maintain their websites and social media."

"Having lived with ME for many years, Kelly has a huge amount of empathy for others living with chronic illness and is excited to be working with the ME Association to support them in the essential work they do to help people living with ME/CFS and Long Covid."
​

It's unclear whether this vacancy is being advertised because the current Communications Officer is leaving or whether an additional Communications Officer is being sought. The pro rata salary isn't great but you can work from home.

 

https://twitter.com/user/status/1876660716507197930


ME Association@MEAssociation
Blog Survey: Requesting information about your ME/CFS Diagnosis The ME Association invites you to complete our survey relating to diagnosis; looking at before and after the 2021 NICE Guideline on ME/CFS. We are conducting the survey to try to find out if:

- People are being diagnosed earlier
- More attention is being paid by doctors to make sure other possible causes of ME/CFS type symptoms are excluded
- People are being referred by GPs to an ME/CFS specialist service to ensure the diagnosis is correct and a care and management plan is prepared.

Take part in the survey: https://meassociation.org.uk/diag #pwME #MECFS #MyalgicEncephalomyelitis #LongCovid #PostCovid #Diagnosis #MECFSSurvey
4:02 PM · Jan 7, 2025

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"People are being referred by GPs to an ME/CFS specialist service to ensure the diagnosis is correct and a care and management plan is prepared."

Pfff!

 

Also laugh out loud lol from me.
Although, if there is somewhere doing care and management plans, this might show us where. I assume they are done in the following parts of the UK-
Narnia
The visiting world at the top of the Faraway Tree
Never Never Land

Appointments are at a billionty past three on the tenth of never.

 

According to our local group, a recent attendee reported that our service still runs sessions lasting two and a half hours. Including dance therapy.

My GP advised me against being referred to it because they expected people to do dance and movement, and that was twenty-six years ago.

You'd almost think nothing had happened since then.

 

It does make you wonder whether anyone at MEA has a clue, doesn't it.
MEA seems to be in danger of turning into a BACME cheerleader troop.

 

I was hacked off when I received my care plan some years ago, which was blank apart from my name, address, and date of birth. I refused to sign it.

I was being unreasonable. There is no care or management for ME/CFS, and the lack of content was accurate and appropriate.

 

That’s two questions in one on the survey proper. Very poor way to phrase a survey question.

 

Survey is here: https://meassociation.org.uk/2025/01/blog-survey-requesting-information-about-your-me-cfs-diagnosis/

 

I filled in the survey. The age shift post 2021 is interesting.

 

Not many responses yet, will be interested to see the final output

 

Yeah. When’s that due?

 

The ME Association Chairman’s Statement for 2024 has been shared;

https://meassociation.org.uk/2025/0...e-me-association-chairmans-statement-for-2024


Copied and discussed here:
https://www.s4me.info/threads/unite...n-governance-issues.42093/page-61#post-579041