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

When I have had the energy and time I have tried, on multiple occasions, to wade my way through the interim delivery plan, understand the content, and then formulate my response and I have really struggled to do so.

Having read through, in particular, the responses from the ME Association and ME Research UK, and sat pondering on what I might say and why I am finding it so difficult, I have come to the belief that the reason why I am finding it so difficult is that there is so little substance to respond to, and that I have little faith that any comments that I might make would make any difference.

I already have plenty of demands on my energy and time, and I have come to a decision that for me, this isn't worth it.

My bundle of random thoughts that I had already gathered together, in case anybody can make use of them.

Research
  • Research quality is lacking. £8m has been spent on research that was of little to no use in the NICE guideline process. Stop funding useless research.
  • It is likely that funding requests are reviewed by people with no experience or understanding of ME/CFS. Much about the condition is counter-intuitive, so likely useful research proposals will seem 'unworthy', while 'worthy' seeming proposals that are actually unhelpful will receive more approval. Input from experts through experience (patients, carers and charity reps) is vital to improve this process.
  • 'Ring fenced' funding is vital, and 'match' funding might be the best way to facilitate this (there are a number of previous examples of where this has happened for other conditions).
  • Co-production of research requires PPI (Patient and Public Involvement) members. What will be done to increase the numbers of potential PPI members? How will barriers to their participation be removed, not least clarity on how payments for their efforts might affect any benefits that they might receive.

Attitudes and experiences
  • Negative experiences of pwME are described as feelings, which diminishes the reality of them.
  • Excusing professionals on the basis of 'official medical terminology' is unacceptable. They should be able to set aside their biases and use some empathy, if they can't then they aren't professionals.
  • A mechanism to report harms from behavioural treatments is still required, along the same lines as the existing Yellow Card system.

Living with ME/CFS - Welfare support subsection
  • The section "DWP's vision for welfare support services" is tone deaf and actually highlights how they do not understand the challenges faced by pwME. This insulting section should be removed.
 
@Andy, I have similar reactions to the small parts I've managed to read. It feels like a step backwards from the NICE guideline in parts, not a step forward. This is not a criticism of the people with ME and carers who have put a lot of effort into contributing, more a recognition that once people who don't really understand ME get involved, and adding a few beaurocrats as well, and the whole think becomes an unwieldy muddle.

I hope you will submit the comments you have made above. They need to hear them.
 
And while I'm getting things about the consultation off of my chest; if they wanted to limit the number of responses that they received from pwME then they possibly couldn't have picked a better format - it is an atrocious document.

The way I, and the rest of the team, approach DecodeME communications is that the vital information needs to be given in as few words as possible, and in as straightforward a way as is possible. We don't always get it right but I think we do pretty well.

This document has far too much superfluous padding to it, and it is a battle to find the actual content in it. Of course, the reason for all the padding is likely to be that the lack of actual content, but each unnecessary word that someone with ME has to read reduces the chances of them getting through the document. And the isolation of the "Agreed actions" from each relevant section makes absolutely no sense to me, it just adds to the confusion. If this was a genuine attempt at a consultation with the ME/CFS community then I'm afraid it failed.
 
I do not have ME. But seriously I cannot but agree wholeheartedly with what you say Andy and Trish.

The elephant in the room is that DHSC Have no teeth .. and NHS England have no committment and worse......

With the likes of their non executive NHSE members at National Level, (SW) what did we expect?
I actually feel sorry fo the poor naive DHSC staff who were tasked to do something and appear to keep us happy.......

They are as much victims as us ( also NICE officers also are victims of maligned and disingenuous NHS/Government/ BSP lobbyist influences).
 
Suffolkres said:
I do not have ME. But seriously I cannot but agree wholeheartedly with what you say Andy and Trish.

The elephant in the room is that DHSC Have no teeth .. and NHS England have no committment and worse......

With the likes of their non executive NHSE members at National Level, (SW) what did we expect?
I actually feel sorry fo the poor naive DHSC staff who were tasked to do something and appear to keep us happy.......

They are as much victims as us ( also NICE officers also are victims of maligned and disingenuous NHS/Government/ BSP lobbyist influences).
Click to expand...
An attendee and member of S4ME has said this week to our network and given permission to share...


"I just came across some scribbled notes from around the time of the (DHSC) workshops last year.

Decided might as well share, for what they’re worth.
So, this is my ’take’, or at least some of it ……

There are undoubtedly barriers that stand in the way of realising beneficial outcomes from this process.
Damaging possibilities, on the other hand, don’t face the same barriers. The prevailing ideological ethos is profoundly unhelpful.

Departure of Sajid Javid removes political will.

There will be no additional funding.

I’ve found DHSC staff pleasant and apparently well motivated. But would have to assume naive re the backdrop or chosing to disregard / try to please all the people with an unholy compromise.

Most patients articulate their problems well, but not all are aware of the big picture and the potential pitfalls.
e.g. social prescribers and work encouragers involved - serious dangers in this regard.

One other thing - with launch of the plan for consultation I see that the NHS occupational health guidance is to be improved - so something has come of our pressure * ........
Of course it should have happened yesterday i.e. right away last year when we brought the problem to attention of the team at DHSC."
 
Having not got around to this until now, given my diversion into challenging Cochrane, I decided today that the only way I'm going to do it is in one single go. I've therefore spent some hours wading through it all and filling in the online questionnaire and submitted it.

I have to say it's the worst organised consultation I've ever had the misfortune to access and respond to. It took me several minutes just to find the right documents.

I got crosser and crosser with it as I went through, ended up answering the wrong sections in some of the boxes, and my comments got shorter and pithier as I went through it. I just hope I got some points across clearly and it was worth the headache it's caused.
 
Snap @Trish I had set aside this afternoon to finally get it done and was exasperated by the difficulty in finding the full documents I needed to read.

I didn't have the capacity to give full answers, and even if I could their word limit was very tight! I missed some of the excellent points @Andy made above but focussed on my personal reaction to the document.

I restrained myself from answering 'I don't ******* believe them' to the question about DWP's assertions and wrote it in a more polite way.

I did feel that the tone of the document with regard to doctors etc was very much that we should be considerate to them to get them to engage with the process, which is certainly not acceptable. I commented that some acknowledgement that previous attitudes had been severely harmful, even fatal to patients needed to be made, in the sense that it can never be allowed again.

I also added that any research agreements should ban BPS research into treatment/recovery which may be wishful thinking but felt I had to say it.
 
Having attempted to get my head round it properly yesterday with the help of @Lucibee s doc and @Yvonne comments together with the @PhysiosforME and ME Association comments I had to stop

The wording of questions do you agree disagree is there information missing etc are unhelpful, the structure of the report with the actions separated from the discussion sections is unhelpful.

the actions are too weak - awareness raising is not sufficient, timescale for some basic stuff that should already have been done is too long.

there’s some small incremental progress in here which is better to have than not but it is far from a step change



I will definitely submit something short as I really want to amplify the need to address nutrition and care of PWME who are very severe.

and specify that research funders should not fund further psychological research as it is not necessary given previous spending levels

eta @Andy thanks for sharing your bullet points I hope you can manage to submit them. I will definitely crib from them
 
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I think I am supposed to be involved in this process - on a research working group.
I am certainly on a research working group but I am not sure if it is part of this.

I guess that means that I am as confused as the rest of you.

At one point I thought I might have a more active role but I was judged by someone not to be suitable for the job. That doesn't bother me personally but I am a bit worried the whole thing may vanish up its own... On the other hand if the value of the exercise is just visibility maybe it is doing some good.
 
Andy said:
When I have had the energy and time I have tried, on multiple occasions, to wade my way through the interim delivery plan, understand the content, and then formulate my response and I have really struggled to do so.

Having read through, in particular, the responses from the ME Association and ME Research UK, and sat pondering on what I might say and why I am finding it so difficult, I have come to the belief that the reason why I am finding it so difficult is that there is so little substance to respond to, and that I have little faith that any comments that I might make would make any difference.

I already have plenty of demands on my energy and time, and I have come to a decision that for me, this isn't worth it.

My bundle of random thoughts that I had already gathered together, in case anybody can make use of them.

Research
  • Research quality is lacking. £8m has been spent on research that was of little to no use in the NICE guideline process. Stop funding useless research.
  • It is likely that funding requests are reviewed by people with no experience or understanding of ME/CFS. Much about the condition is counter-intuitive, so likely useful research proposals will seem 'unworthy', while 'worthy' seeming proposals that are actually unhelpful will receive more approval. Input from experts through experience (patients, carers and charity reps) is vital to improve this process.
  • 'Ring fenced' funding is vital, and 'match' funding might be the best way to facilitate this (there are a number of previous examples of where this has happened for other conditions).
  • Co-production of research requires PPI (Patient and Public Involvement) members. What will be done to increase the numbers of potential PPI members? How will barriers to their participation be removed, not least clarity on how payments for their efforts might affect any benefits that they might receive.

Attitudes and experiences
  • Negative experiences of pwME are described as feelings, which diminishes the reality of them.
  • Excusing professionals on the basis of 'official medical terminology' is unacceptable. They should be able to set aside their biases and use some empathy, if they can't then they aren't professionals.
  • A mechanism to report harms from behavioural treatments is still required, along the same lines as the existing Yellow Card system.

Living with ME/CFS - Welfare support subsection
  • The section "DWP's vision for welfare support services" is tone deaf and actually highlights how they do not understand the challenges faced by pwME. This insulting section should be removed.
Click to expand...
I have been in a similar position. I only managed to read parts of the Delivery Plan and jotted down a few notes. However, one positive of the online feedback form is that once you’ve filled in your personal information you seem to be able to skip as much as you want (just leave it blank and click NEXT). So I just filled in some comments and left other sections blank. I’m not certain that I’ve put the comments in the right places but I’ve submitted them – and I’d encourage others to do the same.

In case it’s of use to anyone else this is what I’ve submitted:

Chapter 2 – RESEARCH:

Previous attempts to stimulate more high-quality ME/CFS research have failed (for example: the 2002 CFS/ME Working Group report to the CMO, the 2006 Gibson Inquiry Report, and the 2008 MRC CFS/ME Expert Group.) These failures should be acknowledged and addressed.

The Delivery Plan should also acknowledge the chronic underfunding of high-quality ME/CFS research relative to other conditions of similar disease burden, and it should go further to ensure that past failures are not repeated.

The Plan should include a commitment to ring-fence funding for high-quality biomedical ME/CFS research (as has been done for Alzheimer's, brain cancer, MND etc.) This should be proportional to disease burden and compensate for decades of underinvestment. Quality controls must be in place to ensure that money is not wasted on low quality research. Money should be carried over if insufficient high-quality proposals are received.

More actions need to be specified to encourage more scientists with relevant expertise from other fields to put their minds towards trying to understand the pathophysiology of ME/CFS. Ring-fenced funding may help but on its own it will not be enough. Something similar to the Rogers Commission should be considered.

We need physician-led services integrated with collaborative research centres.

There also needs to be a specific acknowledgment that the research which resulted in the prescription of GET and CBT as treatments for ME/CFS was flawed, inhibited progress and harmed patients.


CHAPTER 3 – Attitudes and education of professionals

“Both the professional and patient community have acknowledged the need to work in partnership, to face and resolve the challenges of ME/CFS together. Historically, there have been strong opinions expressed by both sides and it is recognised that perceived difficulties in working together may have slowed down progress in research and our understanding of how best to support people with ME/CFS.”

The wording needs to be improved to make it clear that patients are in no way responsible for the historic and current problems between medical professionals and patients. Patients have been failed by those responsible for our care for decades. That needs to be acknowledged in order for trust to be restored.


IMPROVING AWARENESS AND UNDERSTANDING:

There needs to be an explicit acknowledgment that therapies based on the biopsychosocial model (eg GET, CBT and LP) are not supported by the evidence, and that this approach has resulted in the mistreatment and neglect of patients.

—————

At the very end of the form it asks: “Do you think we could improve this [consultation] process?”

I could have written more if I was feeling better but I just wrote:

The document is too long for many ME/CFS patients to read. The language needs to be clearer and more concise in places.

The easy read version appears to have been written for people with learning difficulties by people with little understanding of ME/CFS. For example, it keeps referring to tiredness as a main symptom of ME/CFS which is inaccurate.

It is important to provide access for people with learning difficulties, but that is not what most people with ME/CFS need. An accurate concise summary with clear but not simplified language would be much more useful for many people with ME/CFS.
 
Robert 1973 said:
CHAPTER 3 – Attitudes and education of professionals

“Both the professional and patient community have acknowledged the need to work in partnership, to face and resolve the challenges of ME/CFS together. Historically, there have been strong opinions expressed by both sides and it is recognised that perceived difficulties in working together may have slowed down progress in research and our understanding of how best to support people with ME/CFS.”

The wording needs to be improved to make it clear that patients are in no way responsible for the historic and current problems between medical professionals and patients. Patients have been failed by those responsible for our care for decades. That needs to be acknowledged in order for trust to be restored.
Click to expand...
The attempt to somehow blame both sides is a completely unacceptable and cowardly rewriting of history.

As far as I am aware, to this day there has never been any acknowledgement from the BPS club about the profound technical and ethical failures of their approach and the appalling consequences for patients. Indeed their reactions have been the complete opposite. Utter defiance, denial, and intransigence, and increasingly vicious attempts to smear and blame their critics, especially patients. These guys really think they are above accountability, that they own us, and that nobody, let alone patients, have the right to call them out on all that.

This is one issue we should never compromise on for the sake of 'practical political' considerations. The moment we do that we will lose and they will never be held to account.
 
Well after managing to lose my response yesterday I started again today. No doubt what I submitted wasn’t what I would have done if the set up had been fit for purpose. I managed to make most of my points. Echo what Trish said about comments being sharper towards the end and even though I did pause a couple of times with the page left open so as not to lose it again the effort of filling it in did cause a headache (which I rarely get). Ugh.
 
Robert 1973 said:
online feedback form is that once you’ve filled in your personal information you seem to be able to skip as much as you want (just leave it blank and click NEXT). So I just filled in some comments and left other sections blank. I’m not certain that I’ve put the comments in the right places but I’ve submitted them – and I’d encourage others to do the same.
Click to expand...

You don't have to give them any ID or email address if you don't want to.

Each of the sections has this:
To what extent do you agree or disagree with the contents of this chapter? (optional)
Strongly agree
Agree
Disagree
Strongly disagree
Click to expand...
The 4 multiple choice 'optional' tick answers are the same throughout and I found myself ticking all of the first 3 at least for most answers:
What, if anything, do you think could be improved about this chapter? (optional)

Select all that apply.

Some content is missing
Some content does not reflect my experience
Some content could be simpler or clearer
Some content could be more detailed
Click to expand...
they then allow you up to 250 words to give more details (optional).
The subsections have summaries (the chapter is in the main heading)
are
Research, Attitudes and education, Quality of Life, Support for children and young people with ME/CFS, Health Services for People with ME/CFS, Adult Social Care, Welfare support, Employment,


there is then a page with boxes to tick but no summaries for Agreed Actions, so you'd need to refer to the main report to see what these are in order to answer.

The next 6 pages are on Use of Language in ME/CFS, where it gives you things that people might have said. with a 'have these comments been made to you' yes/no box to tick. Only 30words allowed for any detailed response.
(sections are Chronic fatigue as a symptom of ME/CFS, Recovery from ME/CFS, Misconceptions that ME/CFS is a mental health condition, or how you think can impact your symptoms, The lack of medical tests to prove someone has ME/CFS, There are no obvious signs that someone has ME/CFS, Using pacing to manage energy, Post-exertional malaise is hard to explain/understand )

the last bit is just general about the consultation process. again all optional.

I would suggest that if people would like to contribute, or make a comment on any of the above but are unable to plough thro the documents, that you

1. pick whichever of the above you would like to make any kind of response to,

2. and then just go through the online survey (you can go backwards and forwards) and fill in your bit, go to the end and submit.

You can fill it out more than once.
 
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