UK Government ME/CFS Delivery Plan (includes Attitudes and Education Working Group and Living with ME Working Group) and consultation

Mod note:
This thread was previously specifically for the UK Attitudes and Education Working Group, one of three groups in the government's ME/CFS Delivery Plan. The other groups are the (UKCRC) Research Working Group and the Living With ME working group. There is also a Task and Finish Group which will oversee the project and its goals. Note that only the Research Working Group is run by UKCRC.

This thread has been renamed to be the main thread for the whole UK Government ME/CFS Delivery Plan project. A separate thread for the Research Working Group (https://www.s4me.info/threads/unite...-research-collaboration-subgroup-on-me.27936/) remains.

Edit: To find threads discussing the sections of the interim delivery plan, click on the tag at the top of this thread.

Edit: main link to the consultation https://www.gov.uk/government/consu...es-of-people-with-mecfs-interim-delivery-plan

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I know no more about this other than what appears in this article, https://doctorswith.me/statement-on-uk-dhsc-announcements-and-the-appg-rethinking-me-report/

"Dr. Nina Muirhead, has been invited to co-chair the Education and Attitudes Working Group with Professor Sir Stephen Holgate of Southampton University, UK Medical Research Council Clinical Professor of Immunopharmacology and founding Chair of the ME Research Collaborative (formerly the CMRC)."

 

Hi @Andy

This group, the Attitudes and Education Working Group, is one of three groups in the government's ME/CFS Delivery Plan. The other groups are the (UKCRC) Research working group and the Living With ME working group. There is also a Task and Finish Group which will oversee the project and its goals. Note that only the Research Working Group is run by UKCRC.

I would therefore suggest changing this thread so that it is the main thread for the whole UK Government ME/CFS Delivery Plan project, but perhaps keep (and link to) the separate thread for the Research Working Group (https://www.s4me.info/threads/unite...-research-collaboration-subgroup-on-me.27936/) given it will likely prompt the most discussion.

I think they are currently deciding how to release news and engage with the community, so I'm not sure how this will work.

I have recently left MERC PAG after 3.5 years (purely for personal reasons), so I won't be able to update these threads. @Adrian is still a PAG member and is involved with this work, so maybe he can update if and when he is able to.

 

Thanks, @Hutan

 

Update on the Delivery Plan. For full update see attached document, the most important one being that the delivery plan will now be published early next year, rather than by the end of this year.

 

"The Department of Health and Social Care (DHSC) released the following update on 21 December 2022. If you have any comments to make, then please send by email to: Feedback@meassociation.org.uk and we will collate before sending to the Department in the New Year."
https://meassociation.org.uk/2022/1...n-developing-a-draft-delivery-plan-on-me-cfs/

 

Sonya chowdhury of action for ME says: "
I’m delighted that the cross government national #MECFS interim delivery plan will be launched for consultation later today.
@actionforme
Thanks to
@thetimes
for their coverage this morning raising much-needed awareness"

 

The Times article is good, although let down by the description of the symptoms - no PEM. Their writer who lost a daughter has a comment piece as well. I’ll post it as an archive link when there is a live thread about the delivery plan itself. Comments are the usual - a woman whose CFS was cured with “clinical grade homeopathy” has instigated the liveliest discussion, alas.

Edit - now in the right thread, so here is the link.

https://archive.ph/fjdMi

 

I don't know the detail of what will be in the delivery plan but I do know that it will be released 2pm UK time today.

 

Excellent to see the Times article today.

I think Sean O' Neil pulled out a couple of points that have not been emphasised enough.
Firstly he acknowledges the difficulties the illness can create in families by using his own experience. He wanted Maeve to exercise as suggested as a treatment and wondered what trauma had caused her illness. " For too long I believed the medical orthodoxy, and that strained our family bond." That is a heartbreaking statement which can be read on ME groups frequently. Thanks to Sean for drawing on his own experience of ME.

He then goes on to introduce medicine's treatment of illnesses it cannot understand. "There are attitudinal problems not only with ME, but long covid, fibromyalgia and chronic pain.", particularly with illnesses that afflict primarily women.


There are particular factors here that are not yet widely in the public domain which I hope will be there soon, namely the influence of a small group of doctors and psychologists who have worked and are still working to protect their own rather than patients' interests. Unfortunately they are still in positions of power but these have started to crumble. The need to address long covid may be "another brick in the wall."

edit: I should have said that the article was by health editor - Eleanor Hayward with a bolded inset by Sean entitled " Now listen to the sufferers". Good that a health editor has picked it up.

edit2: I keep finding nuggets here. "Will Quince, a health minister, said: “My heart goes out to anyone impacted by ME/CFS. "
I'm not familiar with Will Quince as a supportive MP but that's a good start. He goes on
"This government is listening. Together, we can work to improve the lives of those who live with ME/CFS, and set out a bold vision for a future in which those impacted feel understood and supported by healthcare services and society as a whole.” Proof of the pudding etc.......but it's a start.

 

From the Times article [my bold]:

“My daughter Maeve succumbed to ME in her teens and died, aged 27, in 2021 after the illness became severe and totally debilitating. She struggled to get doctors and social workers to understand. And for years I also found it hard to accept and understand her illness. I wanted her to try exercise programmes (then recommended as a treatment) and wondered what trauma had caused her condition. For too long I believed the medical orthodoxy, and that strained our family bond.“

I didn’t know that. I hope Sean may write more about it. I really think it helps for people to write about their journey from ignorance based on medical orthodoxy to understanding through personal experience – and through listening to patients and studying literature.

Thanks to Eleanor, Sean and The Times for this helpful article.

[edit: crossed with Binkie.]

 

I would go as far as saying that there is a culture of believing in emotional trauma as cause of symptoms, in psychotherapy as a cure, and the ideology of psychosomatics that tears apart families, wastes time, and erodes the self-esteem of people struggling with poorly understood chronic illnesses.

Family members often participate in this until they know better, but some never evolve past this stage.

 

Are the Comments open on the Times article? And does anyone have a Times Share Token link to the article please?

 

Or not, as seems to be the case. Unfortunately I know no more at this point.