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

[JemPD]

Yes, and those people 'with no axes to grind and a reputation for being honest straightforward individuals' who have made the difference of course includes you, Jonathan.

well amen to that!

 

[Hutan]

https://www.gov.uk/government/consu...erim-delivery-plan-on-mecfs#executive-summary

It will inform the development of a final cross-government delivery plan on ME/CFS.

Edit - I thought that meant, for all nations of the UK, but it doesn't seem to:

For the time being, the interim delivery plan covers the population of England. However, to help inform the final scope of the plan, the Scottish Government is keen to understand the views of stakeholders in Scotland on aspects where there might be the potential to consider any common approaches or relevant actions within a Scottish context. The Welsh Government and Northern Ireland Executive are also keen to review the views of their residents on the interim delivery plan so that they can consider the implications for local policy.

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.

That makes it sound as though the interim delivery plan is the baseline - 'going further' doesn't sound anything like 'returning to the pre-NICE guideline status quo'.

Maybe we have indeed turned a corner, maybe things will be different.

As a person who doesn't live in England, I note that the NICE Guidelines have made a big difference in advocacy, and having a good Delivery Plan to point to will be enormously helpful also.

 

[Sean]

In my view, the main problem lies in the medical and research community and there is a limit to what governments and politicians can do to fix it.

The government ultimately controls the purse strings. They can starve the BPS cult into submission, or at least irrelevance, if required.

Similar with legislation. If the government can ban bad medical practices like conversion therapy for homosexuals, they can ban it in this area too, if required.

if my experience with the working groups run by the Department of Health is anything to go by things have changed in a way that cannot really be reversed.

That is the impression I get from this document (what I have read of it so far). It is a major change of position, which is not something that governments, especially in democracies, tend to do casually.

That said, I will of course be withholding final judgement until I see the practical policy and funding responses. But all indications from this document are that there has been a fundamental government level change in the UK.

Speaking more parochially, it is going to have a major influence on what happens here in Anglophile Australia too (and no doubt other countries).

There have, quite rightly, been complaints about the lack of progress on our new guidelines, including concerns about how they will be produced, and who is going to write them. But it is likely the case that our medical authorities have been (in large part) waiting on the outcome of the NICE process and associated subsequent changes at the government and policy level, before committing firmly to any new position.

It may not be an ideal approach, but it is not an indefensible one either. Apart from any other reason, we are a small country (27 million people), and resources are limited. Makes a certain sense to let others with more resources (especially the UK & USA) do most of the initial heavy lifting, and then use that work to inform our actions, rather than duplicating the entire process here.

I think we need to assume that BPS people will exploit any loophole they can to get funding, and that they will have connections and friends that will overlook questionable behavior. Therefore tight rules to limit research efforts to biomedical aspects would be desirable.

This. The hard core of the BPS gang have it made it crystal clear they are going down with the ship, and are fighting as hard and dirty as ever. They will still need to be actively monitored and opposed (where required). I don't see this changing in the short-med term, though their influence is now clearly greatly reduced and on the decline.

 

[Science For ME]

No decision about a Science for ME submission to the consultation has been made yet.

We have created some threads for members to discuss each section of the consultation and, if they wish, post copies of their submissions. These threads have links to the interim plan and to the consultation document, and copies of relevant content. We hope that these threads will help make it easy for UK members to draft their responses to the consultation (due by 4 October 2023).

1. UK: 2023 Interim Delivery Plan on ME/CFS consultation: Research
2. UK: 2023 Interim Delivery Plan on ME/CFS consultation: Attitudes and education of professionals
3. UK: 2023 Interim Delivery Plan on ME/CFS consultation: Living with ME/CFS
4. UK: 2023 Interim Delivery Plan on ME/CFS consultation: Agreed Actions
5. UK: 2023 Interim Delivery Plan on ME/CFS consultation: Language use


We have a tag: UK Interim Delivery Plan to help you navigate between threads.

 

[Hoopoe]

I see two problems from the research perspective. The first is lack of money (either in terms of ring fencing or in terms of successfully funded projects) the second is the lack of researchers - I think action needs to be taken to interest researchers (in linked or adjacent areas in ME) and this latter problem requires funding of course. There are possible mechanisms for applying for funding for such activities (can't recall the name at the moment). Patients should be involved but the government shouldn't be relying on patients to lead initiatives.

Would it be useful to ask researchers to include a group of ME patients in their studies of other illnesses when these studies are potentially relevant to ME?

A ME comparison group could be added to for example a study of neuromuscular function in patients with myasthenis gravis. This expands knowledge of ME and how it compares to another illness, get research done by someone with experience, and maybe the researchers see something they find interesting to look at in a subsequent study.

 

[Arvo]

I've read all your posts with interest.

I'm so happy for you this is happening.

 

[Annie]

Audio version of the delivery plan:

 

[Andy]

Bit baffled by this
"ME/CFS is a long-term health condition that remains poorly understood, despite affecting an estimated 241,000 children and adults in England.[footnote 1]"

Footnote 1 is to the blog by @Simon M and Chris Ponting, Analysis of data from 500k individuals in UK Biobank shows an inherited component to ME/CFS (Ponting blog). As good as the blog is, I'm not sure it's the best reference for the prevalence of ME/CFS in England.

 

[Hutan]

And 241,000? Is the method of estimation really so accurate that it warrants the precision of that extra 1000?

 

[Kitty]

I see two problems from the research perspective. The first is lack of money (either in terms of ring fencing or in terms of successfully funded projects) the second is the lack of researchers - I think action needs to be taken to interest researchers (in linked or adjacent areas in ME) and this latter problem requires funding of course.

Norwich has been trying to establish a centre of excellence for some time, and it does seem as if we need a couple of these to shift the centre of gravity away from institutions where the BPS school has held sway. They'd need multi-year core grants, so they have the staff resources to go after project funding, establish doctoral programmes, and so on.

 

[FMMM1]

How will funding of bad BPS research be prevented?

I think the key thing here is to systemically target Government funding bodies --- all of the UK BPS research is funded by the Government:

• directly i.e. via "arms length" bodies which are created (by the Government) to allocate public research funding such as ----UKRI (?);
• indirectly i.e. via bodies which themselves are publicly funded such as universities.

OK I've contacted individuals in Government, APPGs, --- pointing out that NICE found all of the publicly funded research was "low or very low quality". Typically studies lacked objective outcome criteria; this was highlighted by the authors [Jonathan & others] of the letter to BMJ*&**.

*https://jnnp.bmj.com/content/early/2023/07/09/jnnp-2022-330463.responses
** - thread - https://www.s4me.info/threads/anoma...me-2023-white-et-al.34097/page-27#post-488173

We have had good discussions with funders who understand much better now,

Interesting - I'd be interested in details.

 

[Adrian]

Norwich has been trying to establish a centre of excellence for some time, and it does seem as if we need a couple of these to shift the centre of gravity away from institutions where the BPS school has held sway. They'd need multi-year core grants, so they have the staff resources to go after project funding, establish doctoral programmes, and so on.

They have been and I think there needs to be several centres (but a center doesn't need to be in one place). I think we need to look at how we create communities around differing potential approaches that can pull in more people.

 

[Adrian]

And 241,000? Is the method of estimation really so accurate that it warrants the precision of that extra 1000?

I think somewhere I remember a figure of 280,000 being quoted for the UK. I assume based on the 250,000 estimate upped for population change. I wondered if this figure of 241k was based on this but adjusted in proportion according to the English population

 

[FMMM1]

As a person who doesn't live in England, I note that the NICE Guidelines have made a big difference in advocacy, and having a good Delivery Plan to point to will be enormously helpful also.

Yea a high profile policy like the UK NICE Guideline creates difficulties for those who wish to stick with the BPS approach.
I think the German proposals* were significantly altered --- the UK NICE Guideline would, I assume, have helped.

https://www.s4me.info/threads/germa...ment-on-me-cfs-report-out-now-may-2023.21266/

 

[FMMM1]

To quote an anonymous nurse from the FINE trial "the bastards don't want to get better".

Yea echoes a comment from a family member --- bear in mind that to pass exams, get a job etc. you had to reiterate these "truths"; look at the great & the good (still) defending their crap research. I wouldn't blame the practitioners, nurses etc., but I wouldn't be opposed to patients complaining to the NHS re treatment which breaches the guideline.

 

[Binkie4]

At the moment I'm feeling quite overwhelmed by the magnitude of the task of responding to the plan. I realise this isn't helpful when at last someone is listening but I am concerned over how many of us are in this position.

I have been active in the past in contacting various bodies as has Mr B, but at this moment, I don't feel for various reasons ( a particularly bad bout of PEM and other health conditions to manage, advancing age) we have the resources to do it. It would be hugely disappointing if there are relatively few responses and could be taken as a signifier of lack of patient interest.

I hope I am being unnecessarily gloomy, that there are sufficient people able to step up and respond with sufficient time and vigour now that someone is finally listening?

 

[Sly Saint]

Merged thread

News story: Government announces new plan to help those impacted by ME/CFS

Interim delivery plan outlines 21 actions to improve understanding, research and care for those living with myalgic encephalomyelitis/chronic fatigue syndrome

• Plan has been developed in close collaboration with people living with the condition, carers and family members, and healthcare and support professionals
• Government invites views on interim delivery plan with consultation open for eight weeks

Plans to help improve the lives of people living with myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) have been outlined by the government today and a consultation launched on how best to deliver the plan.

The interim delivery plan identifies how care and support for those who experience ME/CFS can be practically improved, and sets out the next steps necessary to improve understanding of ME/CFS and support for those affected.

Developed around three key themes - research, attitudes and education, and living with ME – the government is also launching a consultation on the proposals, inviting views on how well the proposed actions address issues important to the ME/CFS community, and to help identify where it needs to go further. This consultation will inform development of a final plan.

Minister of State for Health, Will Quince, said:

We know more needs to be done to understand this debilitating illness and to make sure those affected feel heard and understood by the health service and society more widely.

To help us ensure this plan is as thorough and considerate of personal experience as possible in its delivery, it’s important that those living the condition, their families, carers and professionals share their views.

ME/CFS affects the lives of children and adults across the country and can be an incredibly debilitating condition with fluctuating symptoms making it difficult to take part in everyday activities, enjoy a family or social life, access services and engage in work or education - especially for the estimated 25% of people who have severe or very severe symptoms.

Whilst there are currently no known cures or treatments, people with ME/CFS can be supported to manage their symptoms and maximise their quality of life. As a result, the proposed plans around the theme of ‘living with ME’ has been divided into sub-topics covering children and young people, social care, health, welfare, employment and quality of life.

To address the low capacity and capability of the research community to respond to ME/CFS research needs, low awareness of research needs, and a lack of funding of biomedical research on ME/CFS, six rapid actions are outlined in the plan. This includes UK Clinical Research Collaboration (UKCRC) working groups developing case studies of research, and raising awareness of both research funding and how to increase public involvement in research.

People with ME/CFS have also reported not feeling listened to by professionals, and the impact of ME/CFS on daily life not being understood or acknowledged.

To address this, proposed actions include; NHS England developing an e-learning module on ME/CFS to be available to all professional groups and the public, the Medical Schools Council promoting this to all UK medical schools, and encouraging medical schools to provide undergraduates with direct patient experience of ME/CFS.

For those living with ME/CFS, the aim is to improve awareness and understanding of the services that are available to people who need additional support, including carers.

Measures to enhance support include the Law Commission reviewing existing social care legislation relating to disabled children, and further discussions with stakeholders about health services and adaptations to support better access.

The consultation is open for eight weeks, closing at 11:59 on 4 October.

The delivery plan and consultation is available here.

https://www.gov.uk/government/news/government-announces-new-plan-to-help-those-impacted-by-mecfs

 

[Sly Saint]

GPs to be given training on ME/CFS to counter ‘dismissive attitudes’

NHS England will develop a course on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to counter ‘dismissive attitudes’ among health professionals.

Better training and education on ME/CFS is among 21 actions set out by the Government to improve NHS care for patients who are often not ‘believed, supported or treated equally’.

Many people with ME/CFS report ‘dismissive attitudes’ from some healthcare professionals and feel stigmatised, a Government interim report currently out for consultation states.

Some health professionals are not always aware of the latest NICE guidance with ‘misconceptions’ about the condition persisting, the report said.

The Department of Health and Social Care will identify professionals’ gaps in understanding around ME/CFS by September 2024 and NHS England will develop an e-learning module for those working in health and social care, the Government said.

https://www.pulsetoday.co.uk/news/c...ng-on-me-cfs-to-counter-dismissive-attitudes/

 

[Shadrach Loom]

The comment below the line from David Church is fair, to some extent:

It is not that GPs do not believe patients.
So, how about some training for patients based on their lack of knowledge and belief when told by GPs that there is no treatment or specialist available that we can refer them to that will help?
And to the fact that NHS does not provide such services, nor provide information about which private services are money-grabbing charlatans and which have some evidence base behind them?

A module which explains that the LP is bollocks would be quite handy.

 

[Lou B Lou]

GPs to be given training on ME/CFS to counter ‘dismissive attitudes’

https://www.pulsetoday.co.uk/news/c...ng-on-me-cfs-to-counter-dismissive-attitudes/

Pulse Commenters (GPs) out already. Making it clear that criticizing government proposals that they have not read is preferable to actually reading the Interim Report. One thinks GPs don't need training but ME patients do need to be trained to not ask for referrals to non existent specialists. Must say Pulse Commenters (all GPs) do discourage me from ever trying to discuss ME with my GPs. The dismissal of the disease/ME patients that's noted in the Interim Report is always apparent in those Comments.