United Kingdom: ME Association news

Available on the CC Register on left hand column "Accounts and Annual Returns" pdf = https://register-of-charities.chari...ilsPortlet_priv_r_p_organisationNumber=801279

 

Thank you.

 

Copied from the Long Covid thread.

 

The ME Association welcomes our new Associate Trustee, Tilly Robinson-Miles

"The ME Association is pleased to welcome Tilly Robinson-Miles as a new Associate Trustee. Below Tilly introduces herself and explains why becoming an Associate Trustee is so important to her.

My name is Tilly Robinson-Miles and I joined the ME Association in December 2021, as an Associate Trustee, particularly to support the future trajectory of policy, social media and campaigns work.

I’ve been aware of and have had first-hand experience of ME/ CFS my whole life, having seen the debilitating impact of the condition for my own mother, combined with limited public and professional awareness and acknowledgement of the condition. I have experienced first-hand how invaluable the work of the ME Association is for people with ME/CFS but also their loved ones. I hope through this trusteeship I can support the organisation to continue to be an advocate and huge support for all whose lives are impacted by ME/ CFS."

https://meassociation.org.uk/2022/0...r-new-associate-trustee-tilly-robinson-miles/

 

ME Association grants additional £175k to UK ME/CFS Biobank

"The ME Association has supported the ME/CFS Biobank at the London School of Hygiene & Tropical Medicine ever since it began in 2011 and has single-handedly been providing funding to keep it operational ever since. We believe it to be an essential project that provides biological samples and clinical data to scientists working on ME/CFS around the world.

We have granted additional funding of £175,000 to keep the Biobank running for another 2 years. This will bring our total investment to over £550,000. The goal has always been to support the Biobank until it can become independent. It will achieve this by selling ME/CFS (and MS) biological samples and data in such quantities that future income supports running costs. The appeal to other scientists working in the field is that it can be more cost-effective to purchase high-quality samples and data rather than (or as well as) having to recruit and take samples and data themselves."

https://meassociation.org.uk/2022/05/me-association-grants-additional-175k-to-uk-me-cfs-biobank/

Crossposted here, Updates from the UK ME/CFS Biobank / CureME team

 

Looking at their financial details here, https://register-of-charities.chari...ch/-/charity-details/801279/financial-history, in the last reported financial period they received a large increase in money left to them.

 

https://twitter.com/user/status/1526997260248260609


Tony from MEA looking for someone to do a TV piece to go out with APPG release.

 

"Preferred locations: London/East of England, the Midlands or north of England - because that's where this particular hews channel keeps most of its camera crews!"
".@APPGME Hook for news item is the release next week of the brand-new APPG on ME report entitled 'Re-thinking ME.""

@NelliePledge are you in the midlands or north?

@Gecko do you know anyone?

@Natalie

 

@Colette, see above

 

The 2022 Clinical & Research Guide (The ‘Purple Book’)

"We are very pleased to announce that the 2022 edition of the ME Association’s ME/CFS/PVFS Clinical and Research Guide is now available to purchase from the website shop and that a Kindle version will soon be available on Amazon.

The content of this extensive guide has been completely revised and brought right up to date by Dr Charles Shepherd (Hon. Medical Adviser) and the presentation has been greatly improved by Caroline Cavey (Magazine editor and graphic designer).

The new booklet provides 180 pages of clinical and research information about ME/CFS/PVFS. Previous editions have proved extremely popular with both healthcare professionals, patients, and the people who care for them.

We hope this latest version will be just as helpful."

The ME Association Clinical & Research Guide (2022 Edition)

 

Merged thread

MEA social media post and leaflet on 'managing your emotions' - BPS narrative?

I wanted to put this in the main news, but then I wondered is it psychosomatic or advocacy or what.

But to me this feels an important one to flag and ask whether anyone else feels the same on it?

Can anyone tell me their thoughts?

and I'd love to reply but feel it is beyond my reach energy-wise to nail the words of why this is so inappropriate in their wording without getting it twisted back at me (lots of tip-toeing due to the anti-mental health diversion phrase etc). Anyone have any ideas?

ME Association have just put up a facebook social media post:

It says: "Leaflet: Managing Your Emotions £1

"While ME/CFS is an illness with a wide range of disabling physical symptoms, taking time to be aware of the emotional and psychological impact that can sometimes occur is also important."

See the MEA information leaflet here: https://meassociation.org.uk/96kg"

And in a box over photo:
"Dr Lisa Dvortjetz (MEA Psychology Adviser) explains the role that emotions can play on health despite ME/CFS being a neurological condition & considers how best you can manage them"

A few other people replied on this noting that the 'cause' of their emotions is the very gaslighting and poor treatment from professionals and other people who have the wrong narrative and behave badly towards them. Ironically I'd go further and say this risks feeding the very stigma that makes life so unkind to us,.

I'm really a bit outraged by it, and feel boxed in by it being on a post from a charity that is one of the more read sources for those who don't have ME. It's too close to the mind-body wording for me - I personally particularly hate the psychologists' quote.

Given how hard it would be for someone to write this with limited energy, the nuance required given the anti-mental health retort if you question whether someone is correct etc. and the post itself suggesting 'emotions' I feel it gives to hard a job for patients to be left having to clarify it. Tip-toe round various landmines and not come across as emotional. If they don't reply it could be read as true. If they do there are all sorts of risks of getting it wrong and is so hard to do.

 

I've not read the leaflet but from what you said it sounds counter productive, could cause people to believe ME is psychosomatic. Do other physical illnesses have similar leaflets?

 

Yes i have read it before, it was some time ago, but i dont remember finding anything in it to be concerned about.

 

That's good to know that the leaflet itself is OK.

But the issue was the perception/message that was given by the post itself (hence not detailing the leaflet particularly - as most won't read it given it is paid for), and more importantly the quote. Both of which would be read. And whilst people can 'discuss' it puts those who are ill and have all sorts of landmines to avoid re: BPS in a difficult position to correct what might be assumed from it.

Particularly in the last year I've found the line/'trope' being used is mind-body and telling you to go to psych because the mind affects the body and that is why you are ill. It's the one that is all over the newspapers. Given that a few professionals have used it I assume they have a particular script they've been recently given.

"Dr Lisa Dvortjetz (MEA Psychology Adviser) explains the role that emotions can play on health despite ME/CFS being a neurological condition & considers how best you can manage them"

Is to me sadly ambiguous to be read by those who are mind-body inclined to back them up. If it were from a naive source or not read beyond those with ME who migh read the leaflet if it applied to them that might be one thing.

My concern is that given the MEA are probably the most read by those who don't have ME of the charities, if I pointed such a friend there that post does not make clear it is not suggesting mind-body solutions.

Given the job descriptions for roles in ME services talking of 'holistic' and physios offering CBT all these bits add together to provide a consistent message of ME being treated via the mind - caveating itself of 'its real' and 'a % by the mind'. I've had professionals suddenly pushing the line in the last year. It hasn't even caveated with 'pacing is the management strategy'.

I just think they need to be wary of how this will be used by some to some ME patients - and yes to tell them to shut up about asking for help or their 'functional limitations' meaning you can't do x, or are trapped in a situation, and go off and 'sort your trauma' (which you've never talked about) or something similarly inaccurate.

 

https://meassociation.org.uk/2022/0...n-in-line-with-the-nice-guideline-for-me-cfs/