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

Thought I'd get this one in:

"It is not simply that biomedical research has been underfunded, the research base has been biased by unwarranted funding of psychologically determined research. The NIHR has been especially remiss providing over £4 million since 2008 to studies that have provided no substantive value and which are notable for the demonstrable failure to involve patients at any meaningful point in design, assessment or application of results. It is not enough for the UK Government to begin funding biomedical research into ME/CFS at an adequate level, it must also be acknowledged that a) psychologically determined research into ME/CFS has to date been substantively unrewarding, and b) that effective modern research practice requires collaboration between patient and researcher.

 

MEAction UK's response, https://www.meaction.net/2023/10/03...-reality-the-interim-delivery-plan-on-me-cfs/

 

Reminder that the deadline for the normal online survey is today (4 Oct) at 11.59pm
https://www.gov.uk/government/consu...es-of-people-with-mecfs-interim-delivery-plan

 

McEvedy & Beard had already spread their crypto-ablest propaganda by 1970, Charles Shepherd who trained in the 1970s says that he was taught that ME was hysteria.

 

It is good. And I agree that the format, rubbishness of the document meaning so much has to try and be elucidated, and timescale have prevented those with ME from contributing.

I wonder whether a suggestion to MEAction that they - perhaps using the petition facility in some way - can at least provide an opportunity for those with ME who do agree with this to put their name down as doing such, particularly when they might have been excluded from doing their own submission due to acessibility barriers, to 'multiply the vote' behind this.


To me it seems the only fair and near 'reasonable adjustment' I can think of given how boxed-in this last-minute announcement and claim of it being 'a fair consultation'.

This is what the document itself and survey should have been in some ways. To be accessible and not pointlessly lead severely ill people who can't brush their teeth round in circles to come up with in 30 words a more polite way they should be bigoted to their face with tropes, or people who won't learn and are troping whilst working out how to 'skirt to do it within the rules'. That whole section should never have been done by survey and certainly not in that format if they really wanted to stop the utter bigoted ideological bullying and deliberate stigma-creation (I always srtuggle to find words near how strongly disgusting this is).

I do also think that there is a massive issue with the priority of any illness needing to be those in the worst position, and yet ME has suffered from a removal of this - services designed around those who don't have it vs those who are cited by people who don't want to 'get worse' (understandably) and therefore cite that the future isn't pretty if their adjustments aren't heeded, but also in the bunfight to be heard and lack of energy don't want to listen so they truly advocated for them and understand what it is like to be there. So the truly gross end of the impact of the bigotry is disappeared.

And so I think there needs to be a severe/very severe box - I don't know whether those in charities that work with the severe/very severe could begin some form of collective but I do think there needs to be an oversight group there because they are correct that these people, whose fortune will also be key to the fortune of those less severe (imagine if cancer or MS was 'branded' based on stage 1), to work out how on earth the proper truth and insight can be obained and honoured for those who have been at the thick end of it.

It might also be worth noting the 'involvement issue' and how certain historical changes and just the nature of society have meant that certain demographics and age groups took the brunt, in a way other demographics in a different situation when their 'moment of truth' came still can't recognise and that the 'worst' and only those who experienced it directly should be consulted where there is research or policy on certain things. I'm fed up of patient involvement groups being set up of people who might have got ill-health retirement straightforwardly and weren't bullied daily by those around them thinking that 'being polite to' what are effectively predators charading as people their own age making a business out of coaching over dying people they won't see and won't believe. The people who dropped through the cracks the most aren't there because of their own approach or tenacity but because of targeting and those doign it realising noone was standing by them and seeing it. And that a pat on the head to those who didn't expereince it suggesting 'aren't they the more brave and tenacious' and so on with the manipulation whilst surrounding them with people who are bigoted as they would never see those with severe that much is enough to taint their views. Just because someone is a patient doesn't mean they represent properly those who these groups claim to be ticking the box for.

If people agree with the words of a submission then their weight should be allowed to be added to it, where they are individuals who are too ill to have been given proper access themselves (ie this isn't something for the psychs to copy where it takes 4mins for their underlings to decide to vote for their boss, and a mere % of their time to have already submitted).

Particularly for those who have severe ME, and indeed those with less severe ME who also tend to have the massive 'bigotry-burden' loaded onto them by the biospychosocial/misogynist and disability-hate propaganda course 'model' attacking their access to even having a normal life ie at the same level of demand as normal people of employment and services, nevermind being able to access adjustments there. ie all those who have ME and aren't in an advantaged position where they have other support mechanisms that cushion them from seeing and experiencing (and therefore believing) the reality and what is intended to be imposed on those with it.

 

I cannot speak for Charles Shepherd, but McEvedy and Beard had not "already spread their crypto-ablest propaganda by 1970".

Their paper was published in 1970, but they did not represent the basic view of ME within the scientific community, or even within psychiatry. Chief psychiatric textbooks in the 80's either do not mention ME in their volume on neuroses, or place ME in a physical disease section alongside e.g. neurosyphilis, mentioning that McEvedy and Beard suggested hysteria, but this is set against the features of the outbreak suggesting an organic basis, calling it an unsettled argument. And this is psychiatry.
The fact that the psychiatrists who appropriated ME later made extensive use of the McE&B paper for their own ends should not be confused with the notion that theirs was the widely accepted and dominant view at the time.

The researchers studying ME had actually considered hysteria (from the top of my head in the 60s) and discarded it and spoke out against it, then and later, because it did not fit what they observed and found. For example, a report on a symposium on ME at the Royal Society of Medicine in 1978 says: "Some authors have attempted to dismiss this disease as
hysterical (McE&B reference, again), but the evidence now makes such a tenet unacceptable."

The 70's and 80s actually were a time of lively expanding knowledge of ME, exploring issues that look familiar today: issues with metabolism in the cell, very low lymphocyte oxygen uptake, mitochondrial dysfunction, persistent infection, immunological dysfunction, deformed red bood cells, lactic acidosis, impaired capacity to synthesize muscle protein, and more. (And that's with the technical possibilities of that time, which has since improved.)
There was a lot of interesting and important research going on; in a private conversation, a ME patient described the 80s to me as a "hopeful, exciting time" because of that.

I have no problem believing that it occured that individual physicians discarded individual ME patients as hysterical. (It was new, medical misogyny has a long history, and medicine was still male dominated while ME patients were predominantly female.)
But it is a mistake to portray the time up to the early 90s as a period where the view that ME was hysteria was the commonly accepted and dominant one.

It's a topic that I have yet to explore further (I'm currently using my limited energytime to process the topics I have already researched), but other corroborating clues are the fact that in private conversation another ME patient told me they had a GP at the time willing to try out treatments based on contemporary ME science, and a survey (done in the 80s or early 90s) among Scottish GP's that showed that 10% denied the existence of ME - in 1992 this survey was discussed regarding the issue that it could occur that rural patients, with only one GP practise in their community, would have a problem if they had the poor fortune to have that GP practise be one where the GP did not recognise ME - it described a situation where a patient registered with a GP practise in another town using a false address.

Based on what I know I have no issue with the description in the MEActionUK's response.

 

Action for ME response, https://www.actionforme.org.uk/news/action-for-me-consultation-response/

 

dont know if this has been posted
#MEAction Scotlands response
https://www.meaction.net/2023/10/04...-reality-the-interim-delivery-plan-on-me-cfs/

 

Who do you think are responsible for the hijacking of ME and re-branding it as CFS?

 

Just come across the following - one institute this one based at university of reading but with funding from charitable sources too (Charlie Waller Institute) which is specifically about ‘evidence-based mental health’

https://sites.reading.ac.uk/charlie...ma-in-evidence-based-psychological-treatment/

it has been appointed to provide training for IAPTS since 2008: https://sites.reading.ac.uk/charlie-waller-institute/training/iapt-training/

I applaud the intention of the Charlie Waller Trust with regard improving provision for mental health: https://sites.reading.ac.uk/charlie-waller-institute/about/

I have no idea how many other training areas there are in the country but note this one trains large numbers to do CBT (suspect most aren’t self-funders -fir which I haven’t checked the course yet but don’t know) and also seems to have a lot of speakers and trainers for schools.

I also sadly found a talk for Oct 2020 given by Chalder at the institute, noting this is pre- 2021 guideline but still knowledge certainly wasn’t at that point such that people weren’t aware the old premises snd people weren’t sn issue so worth checking etc.

Anyway my point is that do we need a psych for ME group who are enabled by the patient community then backed by eg ForwardME to start requiring that where such courses that do output hundreds of new therapist a year of talk to schools etc have the correct information on MAr/CFS and all old ‘myths’ are banished - whether they want to change the term to ‘chronic fatigue’ for good or cynical reasons they will be aware that this snd just the ‘long term conditions’ concept + old misinformation in training requires that updates to old knowledge need to be being put out by places like this to both new students and their alumni

and yes if people do end up needing support if they get additional comorbidities in these areas they need their illness to be understood and not have a ‘bigotry barrier’ harming them and preventing them access to treatment for those ?

 

Hi @bobbler,
There is a group of psychologists with lived experience currently working within the BPS. I lead the BPS input into the recent DHSC attitudes and education draft. Are you a psychologist?

 

That is good news. I have a BSc Psychology but am not a psychologist myself.

 

25% Severe ME Group News Page

This is the 25% ME Group submission on the Department of Health and Social Care’s ME/CFS Interim Delivery plan.

 

Subject: DHSC UPDATE: ME/CFS Interim Delivery Plan Consultation

Dear Colleague,



I am pleased to be able to share with you the attached information, which provides an update on the consultation for the cross-government Interim Delivery Plan on ME/CFS.



Please help us to circulate this information widely by sharing it with your networks and anyone you think may be interested, and by making it available on your website and via social media.



You or colleagues may have queries about the information. This mailbox is not resourced to answer individual queries but we would be interested in comments and queries, if you want to collate them from your contacts and then send on to us.



We will use this distribution list to forward future information for public communication about the Delivery Plan on ME/CFS. If you do not want your email address to be used for this purpose, and/or if you want to nominate someone else in your organisation to be the point of contact, please let us know.







ME/CFS Delivery Plan Team

NHS Policy and Performance Group

Department of Health and Social Care

Follow us on Twitter @DHSCgovuk

 

Without the contents of the attachment just sharing the covering email here is pretty pointless.

 

Apologies. My oversight.

 

Thanks. Honestly, it's not worth being in a separate document. The full text is


INFORMATION FOR STAKEHOLDERS

Development of a Delivery Plan on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

6 November 2023

The purpose of this publication is to provide information about work to develop the Final Delivery Plan on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).


Update

On 9 August 2023, DHSC published its Interim Delivery Plan on ME/CFS, alongside a focused 8-week consultation.

A separate 8-week consultation in easy-read format was opened on 4 September 2023.

Both consultations are now closed.

The ME/CFS community responded in force and we are grateful to all of those who used their time and precious energy to provide views.

We received over 3,500 responses to both consultations, from individuals with ME/CFS, carers and family members, from professionals working in, and from organisations interested in, ME/CFS.

We know that many of you want to know what the next steps will be.

We will now take some time to consider in detail all of the individual and organisational responses submitted. We will publish a summary of what we have heard in due course.

Your responses will then be used to develop the Final ME/CFS Delivery Plan for England, engaging - as before - with a range of stakeholders, including people with lived experience of ME/CFS.

Where respondents live or work in Scotland, Wales or Northern Ireland, we will forward those responses to the relevant devolved governments to inform their future policy developments in this area.

 

Blog/ commentary
A Very British Consultation...
Response to the DHSC's ME/CFS Delivery Plan

LONG COVID ADVOCACY


https://longcovidadvocacy.substack....L27YyzpAOYtuuGMXpXCqA_yNw9g5T-4DAvqsnoXRlGods