United Kingdom: ME Association news

Trish said:
They probably do. I think I recall the have jointly funded some research.
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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).
 
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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:
Possible exceptions are carnitine, co-enzyme Q10 and eicosapentaenoic acid (EPA). Carnitine and EPA have been shown to be of some limited benefit in small clinical trials in ME/CFS. So they may be worth a try if you can afford the cost.
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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.
Acupuncture is one approach that does have a degree of scientific evidence to support its use. So this is something that may be worth a try for chronic headaches and localised pain.
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There are epidemiological statements that are wrong, too, such as:
Interstitial cystitis (IC) is an important and very distressing condition that seems to be more common in people with ME/CFS.
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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:
Gabapentin works by increasing the level of a brain chemical transmitter called gamma amino butyric acid.
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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/
 
Nightsong said:
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/
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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

January 1, 2025

Communications Officer (Part-time, Employed) – **CLOSING DATE: 14th January 2025 @5pm**

The ME Association is a registered health charity that provides expert help to people with ME/CFS and Long Covid.

We have established an excellent reputation and consistently deliver high standards of support, reliable and timely information, welcome medical training, effective campaigning, and we fund medical research.

With an increasing demand on core services, we are looking for an enthusiastic, responsible, and well-organised person to join the website and social media team.

The Role
  • £15,600 (FTE 27,300 ) to be paid monthly in arrears.
  • Part-time, Employed:
  • Annual leave: 25 days +bank holidays (pro-rata).
  • Pension: Contributory NEST pension scheme.
  • The option to work from home or from the Head Office in Gawcott.
  • 20 hours a week (Monday – Friday, between 10am – 4pm).
  • 3-month probation.
  • Reporting to Emma Jefferies (Communications & Social Media Lead).
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see https://meassociation.org.uk/2025/01/situations-vacant-communications-officer/?
 
It certainly would be great if someone with ME/CFS who is aware of the issues we regularly talk about here was appointed to the role. Having ME/CFS, or caring for someone with ME/CFS should be seen as an important qualification for the role, not a problem.
 
Hutan said:
It certainly would be great if someone with ME/CFS who is aware of the issues we regularly talk about here was appointed to the role. Having ME/CFS, or caring for someone with ME/CFS should be seen as an important qualification for the role, not a problem.
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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.
 
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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!
 
Dx Revision Watch said:
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!
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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.
 
Dx Revision Watch said:
"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!
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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.
 
MEA said:
We are committed to undertaking a comprehensive review of our current Articles. That review will look at the Code, the Charity Commission’s Model Articles and any other source of good practice. To this end we shall consult widely and transparently including recruiting an independent charity governance professional to advise the charity. We have the same aspiration of all our members, namely, to ensure that the ME Association is run to the highest standards and continues in its charitable mission.
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What does this mean in practice, regarding the issues that have been discussed on this thread and the efforts of people here to understand them and get them resolved?
 
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