United Kingdom: ME Association news

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'.

 

The RCGP accepted that ME/CFS is a medical condition.

That's the bit that stood out for me.
Mental illnesses are medical conditions .
Words matter . Too often the MEA don't seem to get this.

 

Good to see this point was raised and a possible solution that I had mentioned in the past:

I wonder might it work in other health systems? Or indeed perhaps it might still be a possibility in the NHS in some form. At least after the Covid pandemic, telephone appointments seem more available.

 

To be fair, the MEA are only reporting on the meeting, which was Forward-ME meeting with The RCGP.

At my local GP surgery, they are making far greater use of telephone appointments than they ever have - as far as I can see the default is now assumed to be a telephone appointment. Which is mostly a positive step forward but obviously the most severely affected would be unable to cope with even a telephone appointment, and if a GP can't actually see how badly someone is suffering then they are going to have a challenging time accepting the word of the patient or their carer when there is little understanding of how badly very severe ME can affect someone.

 

Does anyone which document this is?

ETA: It might be this: https://meassociation.org.uk/wp-con...linical-Guideline-for-MECFS-December-2021.pdf

 

Dr Charles Shepherd on the ME Association Facebook page:

We are going to send out paper copies of three MEA educational booklets to all GP surgeries in the UK:

MEA GUIDE TO EARLY AND ACCURATE DIAGNOSIS
This is our new and fully updated comprehensive guide to how doctors should be making an early and accurate diagnosis of ME/CFS
Free website download:
https://meassociation.org.uk/2022/0...rtance-of-early-accurate-diagnosis-in-me-cfs/

MEA GUIDE TO LONG COVID AND ME/CFS
This is our new guide to the clinical and pathological overlaps between ME/CFS and Long Covid
This guide also explains how we can help people with Long Covid who have ME/CFS like symptoms - debilitating fatigue and post exertional malaise, cognitive dysfunction, orthostatic intolerance, PoTS etc
Free website download:
https://meassociation.org.uk/2022/05/new-free-booklet-long-covid-and-me-cfs-are-they-the-same/

MEA GUIDE TO THE NEW NICE GUIDELINE ON ME/CFS
This is our summary of all the key recommendations relating to Diagnosis, Management, Children with ME/CFS and Severe ME/CFS that are in the new NICE guideline on ME/CFS:
Free website download:
https://meassociation.org.uk/wp-con...linical-Guideline-for-MECFS-December-2021.pdf

And offer to send a copy of the 2022 MEA purple book on request:
MEA PURPLE BOOK
https://meassociation.org.uk/2022/0...de-the-purple-book-is-now-available-to-order/
The 2022 edition has now been published - covering Research, Diagnosis and Management in considerable detail
We still have funds in the MEA education budget to send out free copies to health professionals throughout the UK

There is clearly a lot of planning involved, specially trying to make sure that our database of GP surgeries is as up to date as possible - so we don’t yet have a firm starting date

This is also going to be quite a costly item from our education and training budget but we believe that it needs to be done
Charles

 

Stating that ME is a medical condition is like saying “ME is real.” Anyone trumpeting those lines is clearly saying it’s psychogenic in a way intended to attract as little protest as possible.

This seems so telegraphed, especially since there apparently were questions about RC opposition to the NICE guidelines.

 

https://meassociation.org.uk/2022/0...cfs-service-about-their-fact-sheet-on-me-cfs/

 

Update from the MEA on their communications with various parts of the NHS about the new guideline.

"This is a brief update on what has happened to far

East Kent NHS Trust: Information leaflet on physiotherapy for ME/CFS withdrawn within hours
https://meassociation.org.uk/.../me-association-writes.../

Norfolk and Norwich NHS Trust - guidance on the management of children and young people with ME/CFS withdrawn
https://meassociation.org.uk/.../norfolk-hospitals-still.../

GP Notes - learning module withdrawn and replaced with two new modules based on the new NICE guideline with help from the MEA
https://meassociation.org.uk/.../gp-notebook-updates-its.../

North Cumbria - no response so far
https://meassociation.org.uk/.../mea-requests-meeting.../

South Coast Fatigue - no response so far
https://meassociation.org.uk/.../mea-writes-to-the-south.../

Torbay and South Devon ME/CFS Service - no response so far
https://meassociation.org.uk/.../mea-writes-to-torbay.../"

https://www.facebook.com/meassociat...f7EY9KZvvSAvsDWDK2i7AeWRQCuQWPdd7PhVwuAxVeQal

 

The MEA have published the report of the Karl Morten organised conference held in July. See Dr Karl Morten - UK researcher based at Oxford University for link.

 

Video:
Juan Corlett, Engagement Lead for Community Support and Integrated Care for the ME Association would like to introduce himself to the ME/CFS community.
Juan says: "I'm extremely proud to have joined this fantastic UK charity for a fantastic cause and something I feel extremely passionate about and something I'm determined to commit to.
I want to help the team make a difference as we represent a large community of people who need us to do things well and I can't wait to get stuck in."

Code:

https://www.facebook.com/meassociation/videos/647995480234614/

 

I don't know much about the IOM service, or Juan, but this is the type of work that clearly needs someone with a bit of know-how.

 

As far as I know, the IoM service has minimal involvement from doctors. It is based around other health professionals. In my opinion, not a model to aspire to.