United Kingdom: ME Association news

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/

 

United Kingdom: ME Association

RCGP Meeting – General Practice and the new NICE guideline on ME/CFS

Report on a meeting held on Thursday 16th June between Forward-ME (FME) and the Royal College of General Practitioners (RCGP) to discuss implementation of the new NICE guideline on ME/CFS in primary care.

 

Worth a read of this report. I found it so frustrating. Basically confirms the same crux of the issue. Forward ME have got a big job because it looks like denial re: BPS approach whilst claiming they don't see the illness as psychological lurks large in this report.

And so difficult to post a comment - given the back into the corner on claims of BPS - 'holistic' and mental health (they actually used the = biological factors and psychological factors and social factors in their spiel - just forget to mention that unlike psychology who'd describe the issue as situational and needing support, the BPS ideology puts all the blame on 'perception' and the PwME's job to sort out).

Can we get together some good come-back to be able to note that all the BPS and motivational nonsense is actually the stigma and not the cure. I see several videos a day from norms who got covid talking about their 2 weeks and it affected their mind, and talking about what they learned and that nonsense, and noone points out that is how ME-stigma/bigotry on our condition takes its form. They are saying bad things hidden by being written in such spiel to make them seem as if they are good things.

The fact is I can't get the response right on my own but we need to be able to put good comments on public threads like these. It's one that might be more likely to be read by those who don't have ME. And isn't a private group. And it upsets me that I can't nail the words to retort to all this. And we can't just point people to a link of what 'BPS' actually is, in case one norm reads it and is curious enough to click on the link.

And as a side-action/issue:
I feel like we need to start nailing that BPS is stigma not help, but also point out 'this is what ME-stigma looks like' (so they can spot it in others and notice when they do it themselves), 'this is what it causes' (people actually think it doesn't matter and is just a bit of name-calling, because they don't know how ill we are and how it deprives us of help and adjustments from all those around us). I'd like notes that do say if noise and exertion isn't sorted then people will get more ill and look more fragile (and no they aren't making it up, and don't 'have something else') and that yes the little liberty taken by people here or there or deciding that bit of help doesn't matter really is what led to someone looking like that.

It needs to be on general social media just like all the mind-body stuff is. Ideally with a few celebs or trusted people. Just popping up regularly as short videos and messages. To back up responses to these kinds of issues (so that we have links to short videos and pages). And maybe with some good ideas of how people actually can help or act if asked for help by someone.

I have severe ME. It is awful. I honestly say that the bigotry is worse than the illness itself. It is the cherry on top of the cake of no 'cure'. I've been cut-off from getting help on the things that might help in pacing or survival (and am too ill to sort alone). It has taken away all help, all connections, all good faith and all kindness or consideration normal people might expect day-to-day. Exactly when and with those who need the help most. It's bad enough NHS haven't helped most of us, but their choice in how they do this has affected access to others offering any support too. It's cut us off.

It feels time-contingent urgent that people start taking the mind-body videos that spread stigma that I keep seeing everywhere on social media and edit a few (or do a parody of them if there is a copyright issue) and put the truth over them to highlight to norms who kid themselves they are learning something clever that it is instead ME-bigotry/stigma (we really need a specific term for it too). To have campaigns that flag the tenets of how the stigma operates: step 1: minimisation, step 2: misdirection, step 3: cast aspersions when someone gets more ill , step 4: relate it to something normal people might imagine, so they think they now have expertise to offer - even though they actually don't have any experience of it.

And the more people who have seen one of these videos or read a one-liner the more it embeds because of the stupid fallacy of people that 'if we all think it then it must be true and the PwME must be the one who is deluded'. And noone has pointed out that is stigma, and that is how 'isms' and 'ogynies' operate. Just like I'm sure before we cracked racism or homophobia people used to find others who thought or said the same as them and thought they weren't being racist with what they were saying or thinking because they just wanted to help or whatnot.

Because at the moment we can't even answer back to this. Because they pretend BPS is 'mental health' or 'holistic' or 'social and psychological support', so objections have to try and point out they are wrong. Which makes for long replies which risk one-word anti-mental health retorts with noone really understanding or wanting to read the detail to realise the nuances. ie hide it under the 'nice guy pretence'.