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

I think that the consultation webpages are distinctly lacking in clear instructions about what information they are providing, what feedback they are interested in, and how people can give that feedback. So I thought I would share my thoughts on all of that in the hope that it is useful to anybody else.

The consultation homepage, https://www.gov.uk/government/consu...es-of-people-with-mecfs-interim-delivery-plan, gives links to two other pages on the website,
Consultation document: the interim delivery plan on ME/CFS and My full reality: the interim delivery plan on ME/CFS.

The second of those, My full reality: the interim delivery plan on ME/CFS, is the full interim delivery plan, so that is the one to choose if you want to read through it.

The first one, Consultation document: the interim delivery plan on ME/CFS, gives much information which, in my opinion, should be directly available on the consultation home page. It mixes selected quotes from the interim delivery plan with additional information, such as

"Scope of the consultation

We know that people living with ME/CFS need support from a range of services.

We are now inviting stakeholders across the UK - including people living ME/CFS, their families and carers, healthcare professionals and researchers - to put forward their views on a set of actions on research, attitudes and education, and living with ME/CFS, as well as about language used in ME/CFS.

Your responses to this survey will used to build a picture of how well the interim delivery plan identifies and addresses the issues most important to the community of people interested in ME/CFS, and help us to understand where we need to go further. "

and

"Questions

Chapters 2, 3 and 4 of the plan set out the key problems to be addressed, some proposed descriptions of the future vision to be achieved and best practice principles for everyone to be aware of. Chapter 5 lists the agreed actions setting out what will happen to address the problems identified."

It then explains, I assume, on how the online survey is structured, which is their preferred way for anybody to give their opinion. These questions are asked for each chapter (Research, Attitudes and education, Living with ME/CFS, Agreed actions, and Language use in relation to ME/CFS); some chapters have opportunity for feedback on multiple sub-sections.

"Questions

To what extent do you agree or disagree with the contents of this chapter?

  • strongly agree
  • agree
  • disagree
  • strongly disagree
What, if anything, do you think could be improved about this chapter? (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
Do you have further comments? (250 words maximum)"

And then finally they explain

"How to respond
The easiest way to participate in the consultation is by completing the online survey.

If you have any problems with using the online survey or require an alternative format, please email mecfs@dhsc.gov.uk. Do not send your consultation responses or any personal information to this email address. [Note: see my post here, https://www.s4me.info/threads/uk-uk...ith-me-working-group.28181/page-7#post-489080, where I have posted the details they gave me about alternative formats]

Next steps
The views and experiences gathered through this consultation will used to build a picture of how well the interim delivery plan identifies and addresses the issues most important to the community of people interested in ME/CFS, and help us to understand where we need to go further. We will publish the final delivery plan later this year."

Hope that helps make it a bit clearer to anybody confused by it.
 
Andy said:
I think that the consultation webpages are distinctly lacking in clear instructions about what information they are providing, what feedback they are interested in, and how people can give that feedback. So I thought I would share my thoughts on all of that in the hope that it is useful to anybody else.
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@Andy This is massively helpful, thank you very much! :thumbup:

I was trying to get to a simple set of instructions, but currently very foggy brain wasn't cooperating:facepalm:
 
My thoughts, for what they are worth, are that:
1. The change in approach to ME/CFS patients has to be compulsory or the whole exercise will go nowhere. Doctors need to be held accountable, or rather need to be able to be held accountable, and the GMC is ignoring wholesale disregard of NG206. They have a responsibility to act because PEM / GET is a SAFETY issue. Without acknowledging GET can cause harm and PEM is a safety issue this simply becomes an argument about a harmless disagreement over perspectives on treatment approach, which does not represent what is actually happening. The banning of GET is about preventing harm as well as stopping an ineffective treatment and there is a lot of patient feedback in the GET harms files to back this up.
2. Biopsychosocial medicine is an approach that is being forced on every patient in clinical care in the UK at every single consultation WITHOUT OUR CONSENT. Responding to this issue needs a clear strategy, perhaps research into gaslighting harms, and a way of arguing for a solution which makes sense for both doctors and patients.
3. An organisation such as the NSPCC (unless anyone can think of a better one) needs to campaign for a focussed top-down inspection of every paed unit and clinic in the country to check for children who have had a dx of ME or who meet/have met criteria, (or who have PEM?) who are being mis- or re-diagnosed and given forced exercise/exertion/sensory stimulation, denied essential care involving nutrition, fluids, etc, or whose parents are being subjected to FII. The ME community needs to argue for an inspection of the UK NHS paeds service to ensure no child has slipped through the net and into the hands of unintentional (or heaven forbid intentional) abuse by medical professionals. This is just common sense from what I can see - it's just the same questions that need to be asked about any arena in which children are at the mercy of those in authority over them - the same questions that are routinely and regularly asked about all children's homes, schools, and organisations that work with children. Why should medical care be any different? The only issue here is that safeguarding itself can be (unintentionally or intentionally) misused, hence we need checks that understand that and take it into account. Now might be the moment to press for this to happen given this report just published.
Feel free to disagree - this is just my personal response on reading this document.
 
Adam pwme said:
Uploaded the segment to YouTube

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Not particularly impressed by that discussion. The participants clearly did not have a solid grasp of the real situation.

One participant in particular was pushing the patients are anti-psych line, that some patients get better with GET and CBT, and described the recent propaganda hit-piece from White and the usual suspects as "research", when it is about as far from genuine research as it is possible to get.

Either he is an idiot trying to play neutral balanced observer, or just a vapid mouthpiece for the psychs.

All of which just demonstrates is just how deeply embedded this crap is, and how far we have to go.
 
AknaMontes said:
My thoughts, for what they are worth, are that:
1. The change in approach to ME/CFS patients has to be compulsory or the whole exercise will go nowhere. Doctors need to be held accountable, or rather need to be able to be held accountable, and the GMC is ignoring wholesale disregard of NG206. They have a responsibility to act because PEM / GET is a SAFETY issue. Without acknowledging GET can cause harm and PEM is a safety issue this simply becomes an argument about a harmless disagreement over perspectives on treatment approach, which does not represent what is actually happening. The banning of GET is about preventing harm as well as stopping an ineffective treatment and there is a lot of patient feedback in the GET harms files to back this up.
2. Biopsychosocial medicine is an approach that is being forced on every patient in clinical care in the UK at every single consultation WITHOUT OUR CONSENT. Responding to this issue needs a clear strategy, perhaps research into gaslighting harms, and a way of arguing for a solution which makes sense for both doctors and patients.
3. An organisation such as the NSPCC (unless anyone can think of a better one) needs to campaign for a focussed top-down inspection of every paed unit and clinic in the country to check for children who have had a dx of ME or who meet/have met criteria, (or who have PEM?) who are being mis- or re-diagnosed and given forced exercise/exertion/sensory stimulation, denied essential care involving nutrition, fluids, etc, or whose parents are being subjected to FII. The ME community needs to argue for an inspection of the UK NHS paeds service to ensure no child has slipped through the net and into the hands of unintentional (or heaven forbid intentional) abuse by medical professionals. This is just common sense from what I can see - it's just the same questions that need to be asked about any arena in which children are at the mercy of those in authority over them - the same questions that are routinely and regularly asked about all children's homes, schools, and organisations that work with children. Why should medical care be any different? The only issue here is that safeguarding itself can be (unintentionally or intentionally) misused, hence we need checks that understand that and take it into account. Now might be the moment to press for this to happen given this report just published.
Feel free to disagree - this is just my personal response on reading this document.
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My response to your well thought out reasoning.

1st there must be data. We have no data on numbers of those with ME or how long they have had the illness and what treatment they have had. These figures would speak for us and we need to make sure they are properly kept and overseen.

Your point about the GMC. The GMC set the questions for exams so they do need to be involved and the information they are based on are robust. Question need to be asked and directed to all who are involved to get movement on this such as all the charities and MPs but mostly a pathway explained to how NHS GMC and training works because I do not feel anyone knows. What independent oversight of the quality on which they base the questions of exams and teaching is there

When I wrote to GMC about the evidence the drs training are based on which have led to bad outcomes and inappropriate response to questions asked by patients, they said they were aware of the issues. My argument is that if they are are responsible for the teaching of Drs then it is their duty to unravel the mess caused by the PACE trial as they set the questions for the exams.

Perhaps this is why there are no training and no data so opinion can be debated rather than known facts make the foundation of training.

The question needs to be asked is Simon Wessley on their list of trainers? I think he was at the time and therefore they should and could have done something about the harm they obviously knew about. This is part of their response:
Whilst we do understand why you have significant concerns about this research and the impact it has had, overall, we are not of the view that this would require us to open an investigation with a view to restricting the medical registration of any of the doctors involved in carrying out this research.

Both my letter and theirs can be read here https://www.blogger.com/u/1/blog/post/edit/8848034302481479759/2403287135734725669

The only way to make sure Drs are made to follow the correct advice is through not only the NICE guidelines but the teaching over seen by the GMC. Making the GMC do their duty?

It seemed to me that if they knew there was a problem back then with training why did they not fix the problem.

I will come back to the other issues with Fii soon but wondered what others thought about this issue in the first place.
 
Adrian said:
One of the current themes in medical research is 'co-production' with people with lived experience. We see that in Decode for example with @Andy as one of the leaders of the team. So this action is really about helping ensure that can happen in an easy and smooth way. Its not clear quite how at the moment (there have been a number of discussions) but the intent is to make it simple to include patients (and a wide variety of patients) in the research process.
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This is what I hope to do with my Trialblazers application to the MRC in November. Hopefully I can collaborate with Sonya C and co and others. I am currently working on a new "plain language summary".

The basic concept of Trialblazers is that patients (in collaboration with an unbiased expert such as... Jonathan Edwards??) would design a trial from scratch. My proposed prototype/pilot for this, particularly relevant because of the government delivery plan regarding research for ME/CFS, would be to design a trial of existing drugs [edit - existing drugs used for other conditions and repurposed] for ME. This is the 2nd priority in the ME/CFS priority setting partnership. (https://www.jla.nihr.ac.uk/priority-setting-partnerships/ME-CFS/top-10-priorities.htm).

I have just completed a "participatory" research project designing a trial for people with psoriatic arthritis - to help a rheumatology clinical researcher in my department. I will write this work up shortly. I held a series of workshops (one in person and two online) and involved 26 patients.

According to the delivery plan, the government wants to make it easier for researchers to get into ME/CFS research. So if a funder were to post a patient-designed, pre-approved trial protocol on their site with funding attached, then researchers without extensive previous experience could apply.

There are more details about the Trialblazers project here, but this is a bit out of date https://www.s4me.info/threads/reque...search-funding-application.31834/#post-468748
 
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Tilly said:
Your point about the GMC. The GMC set the questions for exams so they do need to be involved and the information they are based on are robust.
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Is this the case?
My understanding is that the GMC are not involved in training and education - that is the Royal Colleges and Universities. The GMC's job is to ensure doctors hold the right qualifications and practice ethically.
 
Jonathan Edwards said:
Is this the case?
My understanding is that the GMC are not involved in training and education - that is the Royal Colleges and Universities. The GMC's job is to ensure doctors hold the right qualifications and practice ethically.
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It is a murky mess and difficult to get to the bottom of things due to not being given the information fully and with transparency. My point years ago - if they decide what Drs are qualified then they should have control over the trainers of those Drs? Simon Wessley was one such Dr.

My comments to their bullet points:

They decide which Drs are qualified to work in the UK, I presume that means UK trained Drs too and if they are the ones who structured the education of GPs with conditions they should be accountable regardless of license of the work they do with patients. They are ultimately accountable for standards of learning?

They oversee medical training so have the last word over the exams. We have to start at the top and work down otherwise there will have loopholes. This then makes them accountable.

They set the standard, well they need do some apologising and hard work with this! So many have been harmed both physically but also mentally by the attitudes and misinformation. ME should have been in the exams years ago along with EDS, Mast Cell, post viral events.

They should now take action and point out the facts with regards to those that have been working in the area of ME and have made so many complaints over the years against good medical advice that has been proven by science was the right approach. Taking down the illness beliefs that clearly go against the science must be of top priority. It is no long appropriate; if indeed it was ever appropriate to work with just an opinion of the few against the lived experience of the many.

Their last point "the public's confidence in doctors" this is no longer at risk but how most patients feel about drs and consultants in most if not all settings due to the inaction on the GMC.

So upload_2023-8-16_8-0-45.png
https://www.gmc-uk.org/education/standards-guidance-and-curricula/curricula
https://www.gmc-uk.org/about/what-we-do-and-why/learning-and-support
https://www.gmc-uk.org/education/st...a/guidance/national-professional-examinations
 
Tilly said:
It is a murky mess and difficult to get to the bottom of things due to not being given the information fully and with transparency.
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My experience of the situation, having been involved in devising speciality exams etc., and my reading of the GMC document is that the GMC aim to ensure that an appropriate training structure is in place but they do not get involved in content.

The problem is that there is no final authority when dealing with a profession like medicine - the best opinion on what should be taught is just the consensus of the members of the profession. We have seen that the consensus amongst the medical profession looks much more like the 2007 guidelines than 2021 - judging by the letters from Royal Colleges. I don't think the problem lies with any entity called GMC. It lies with the whole profession. If it were a problem that could be judged from outside - like immoral behaviour - it would be easy. But there are no medics at the GMC other than the medics in the Colleges.

I can see what you are saying but it isn't that simple. The question is what should students and doctors be taught about ME/CFS. That is going to be a matter of opinion. The opinion should be based on facts and rational arguments but life isn't always that simple. It should not contain any reference to EDS, which every student is taught about but has nothing to do with ME as far as we know. It should not contain anything about MCAS because there is still no good evidence it is a valid concept, and again nothing to do with ME.

The NICE committee got things about as right as one could hope I think. The GMC will include lay members and maybe they should be vocal in pressing Colleges to reflect NICE in their training.
 
Jonathan Edwards said:
My experience of the situation, having been involved in devising speciality exams etc., and my reading of the GMC document is that the GMC aim to ensure that an appropriate training structure is in place but they do not get involved in content.

The problem is that there is no final authority when dealing with a profession like medicine - the best opinion on what should be taught is just the consensus of the members of the profession. We have seen that the consensus amongst the medical profession looks much more like the 2007 guidelines than 2021 - judging by the letters from Royal Colleges. I don't think the problem lies with any entity called GMC. It lies with the whole profession. If it were a problem that could be judged from outside - like immoral behaviour - it would be easy. But there are no medics at the GMC other than the medics in the Colleges.

I can see what you are saying but it isn't that simple. The question is what should students and doctors be taught about ME/CFS. That is going to be a matter of opinion. The opinion should be based on facts and rational arguments but life isn't always that simple. It should not contain any reference to EDS, which every student is taught about but has nothing to do with ME as far as we know. It should not contain anything about MCAS because there is still no good evidence it is a valid concept, and again nothing to do with ME.

The NICE committee got things about as right as one could hope I think. The GMC will include lay members and maybe they should be vocal in pressing Colleges to reflect NICE in their training.
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I understand that it is the whole profession. I also get your experience about education and the GMC. However you/the public have to start somewhere and it is because the public have not been involved that the problem exists with opinion. The body tells us what with data? We have no data! not even the numbers of people with ME in 2020 let alone 2023! What ages are they. How many women/men/children NO DATA

Too long the data has been hidden and with AI this needs to be resolved and is why a full understanding regardless of evidence in research. We have to start with who comes through the doors and with what issues and why. EDS and Mast Cell is important. You only have to look at the work going on in autism and the connection along with the understanding of estrogen falls with menopauses' and the problems with EDS hEDS. Women have been walking this earth for a long time for them to be added recently to research is unforgivable. The differences between men and women bodies is just more than a little, yet still it is men's bodies that are evidenced in medical books! To deny that there are problems that happen with their fluctuations with time and monthly events is rather more than just forgetful and can teach us so much. This may seem like digression but when you consider that more women than men get ME and are more severe, that we know the autoimmune is implicated, that hormones have known to cause disturbances and many young people come down with ME at certain ages needs data!

You cannot find what you are not looking for, research has to come after the data and no data has been collected and it needs to be so that we can see connections that may or may not be of help. Will that help us with the GMC and the Royal Colleges? Well I hope so because https://www.gmc-uk.org/about/what-we-do-and-why/data-and-research/gmc-data-explorer and the https://www.england.nhs.uk/rightcare/rightcare-methodology/

We have to ask for the data to be collected in the right way in this for the support and to stop the harm we have heard about. That harm also needs to be collected in data form to understand where our efforts need to be focused regardless of the Royal Collages they are all committed to the data to find better care.
 
Now Pulse GPs say they should not have to have anything to do with us because there are no treatments for ME. And claim that GPs are being gaslighted too! They refuse to read NICE 2021. They refuse to have their education updated. They refuse to let go of decades old misinformation. The resistance in those Comments is extreme and very disturbing.


"...The government should suggest ME type patients go straight to self help groups and online advice. Pretending we can help is demoralising for both the patients and the GPs and is gaslighting both groups"
 
Lou B Lou said:
Pretending we can help is demoralising for both the patients and the GPs and is gaslighting both groups
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Not sure they quite get gaslighting.

But anyway, of course they shouldn't pretend they can help, and yes it's demoralising for both groups. But GPs are gatekeepers.

People can't get a fit note for work or college without seeing a GP; it's difficult to get some home adaptations or Blue Badges; it's even harder to apply for benefits without a GP's backup (including evidence of ongoing care); it's impossible to access a prescription for anything from painkillers to a powerchair. Not to speak of dealing with concerning new symptoms that may or may not be connected to ME. So GPs can help, and the good ones do. It's their job after all.
 
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