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

Also, a note on the form delay. It's a credible explanation.

It's not the same thing as, say, the Cochrane excuse and their system making it difficult to publish a bit of text.

Online forms like this have data behind them. There is security, they have to be tested, the data has to produce reports, etc. These things happen, and IT is always handed the stuff at the last minute.
 
It gets worse -

Pulse GP: "Physical activities are good for ME and CFS. And working help their mental health"


GPs do not go without vital healthcare because of ME patients. Their friendships and family relationships are not destroyed because of ME patients. Their lives are not downgraded to disposable because of ME sufferers. GPs have been misinformed, but that does not excuse those appallingly smug and contemptuous attitudes or the behaviors by doctors that ME patients have been subjected to. ME patients suffer at the hands of diverse doctors.
 
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Hoopoe said:
This could lead to funding of CBT/GET-like research that is presented as being of higher quality. In the NICE guidance, the low quality rating was in part the result of using outdated case definitions. What if the CBT/GET proponents use some newer case definition? Then their research might be considered moderate quality according to the (flawed) grading system.

I believe the reason they achieved some positive results is probably more because they aren't properly controlling for nonspecific effects, rather than the use of a bad case definition that allowed patients in that don't have PEM.

It might be hard to persuade funders to reject studies that lack blinding and use self-reported outcomes because it would imply that many other studies are also bad. A paradigm change that is much larger than ME/CFS would be required. Maybe some way can be found to prevent funding of more bad CBT/GET research that is less likely to encounter resistance?

Maybe a clear statement that patients do not want any research that has characteristics of the typical CBT/GET studies?
I am coming back to the idea of Norwegian model where patients have veto rights to prevent research they don't like.
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I feel a bit uneasy about a system where patients veto research that 'isn't liked' or certain sorts of studies are prohibited. I think a system that ranked research based on the likelihood of it producing valuable information would ensure that a CBT trial, and especially one with subjective outcomes, would end up near the bottom of the pile - it's a treatment that has been tried before, many times, and hasn't worked.

I just want to challenge the idea that the grading system is flawed. I think probably any grading system can be flawed if the person using it doesn't know what they are doing or is biased. The GRADE system can work. A CBT trial that uses subjective outcomes is going to produce biased results, so the size of any outcome has to exceed that which can be obtained for a treatment that is both hyped and we know to have no actual effect. There would be some ways to estimate that. So, if there is no blinding, the result has to be outstanding, in order to be valid evidence of a clinically useful benefit. If, for example, 60% of the participants in a good sized trial reported being completely recovered at 1 year followup and the recovery rate in a suitable control was 5%, I think there is potentially some evidence there that should be considered.

I think it's valid to not allow certain researchers who have done very poor work and/or have shown contempt for the patient group they would be working with to get further funding though. It's reasonable to require researchers to demonstrate meaningful engagement with the patient community in order to be funded. It's crucial to have expert patients on research funding panels.

Edit - there are other issues too that might impact on whether a BPS treatment trial is funded - informed consent of the patients, likelihood of harm
 
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Hutan said:
It's reasonable to require researchers to demonstrate meaningful engagement with the patient community in order to be funded. It's crucial to have expert patients on research funding panels.
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it depends what is meant by 'meaningful'... im pretty sure PACE had meaninfgul engagement with the community, or at least sections of it through AfME
 
JemPD said:
it depends what is meant by 'meaningful'... im pretty sure PACE had meaninfgul engagement with the community, or at least sections of it through AfME
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Yep, and to a large extent, that's on the ME/CFS community. That is one thing people with ME/CFS can be accountable for - ensuring our patient charities are informed and representing our interests well. I don't underestimate how hard that is (we have ANZMES where I am, for example), but that is our job.
 
Hutan said:
CBT trial that uses subjective outcomes is going to produce biased results, so the size of any outcome has to exceed that which can be obtained for a treatment that is both hyped and we know to have no actual effect. There would be some ways to estimate that.
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There is no way to estimate the size of nonspecific effects other than with a blinded and properly controlled trial.

The size of nonspecific effects will depend on the specific contexts in a clinical trial. We know that some factors will increase nonspecific effects but we can't predict things precisely. If accurate predictions were possible we would not need blinded and properly controlled trials.
 
A reminder to consider using the consultation threads for relevant discussion. That way, useful points can inform submissions.

Some posts have been moved to consultation threads.

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.
 
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Andy said:
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.
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There's no way in the standard consultation process to make a comment on the Introduction content. I guess it could be shoehorned into comment on another section.

I thought that the 'My full reality: the interim delivery plan on ME/CFS' was a strange title. What was the thinking behind 'my full reality'? Is my reality different to your reality? What is my reality full of? There's echoes of 'think differently, and you will be well', even though I am sure the phrase wasn't meant that way. I don't think there's any upside to that phrase.

I'd be happier if the 'My full reality' was ditched.
 
Hutan said:
I feel a bit uneasy about a system where patients veto research that 'isn't liked' or certain sorts of studies are prohibited.
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Me too.

Not saying it is not worth considering some form of it. Genuine and substantial patient involvement is an absolute must, and anything that has high levels of patient rejection is a non-starter. But veto is a serious power, and patients can be just as ignorant, foolish, biased, and stubborn as anybody else.
 
Hoopoe said:
This could lead to funding of CBT/GET-like research that is presented as being of higher quality. In the NICE guidance, the low quality rating was in part the result of using outdated case definitions. What if the CBT/GET proponents use some newer case definition? Then their research might be considered moderate quality according to the (flawed) grading system.
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An example of this would be Wyller's recent work, and how the Lightning Process study at NTNU is presented. "We're using the Canada Criteria, see we're doing like that patients are asking and still they complain!"
 
Jo @cfs_jo on Twitter has given permission for me to repost this email response to her series of questions:


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Adrian said:
Are they willfully failing to understand their methodological issues - or do they really not get what it takes to do meaningful research?
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They are at least willfully avoiding to answer the critique they are getting, and using their authority as researchers to get away with not answering questions. As here, where Wyller is allowed to say their Lightning Process study uses "gold standard" methodology just because it is randomised and controlled, not replying to the problems the patient advocate Håland rises of lack of long term control (due to the stepped wedge design) and lack of objective measures:
Have started a signature campaign to stop ME studies
 
Adrian said:
Are they willfully failing to understand their methodological issues - or do they really not get what it takes to do meaningful research?
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They got nothing otherwise. It's that simple. None of their stuff passes scientific scrutiny. Not a single bit of it. They obviously understand that. They probably believe that eventually they'll figure it out in a way that does, but they can't back out of what they've done so they keep pushing using force instead of evidence.

Pretending to do patient engagement kind of works, but they don't have a choice to misrepresent and distort, so it's the same in the end.
 
Hoopoe said:
This could lead to funding of CBT/GET-like research that is presented as being of higher quality. In the NICE guidance, the low quality rating was in part the result of using outdated case definitions. What if the CBT/GET proponents use some newer case definition? Then their research might be considered moderate quality according to the (flawed) grading system.
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If PACE had actually been carried out according to the original protocol then it would have (more) clearly demonstrated that the intervention didn't provide meaningful improvement.
Lets says you (researcher) apply the following year (for funding) for basically the same study. I'll (reviewer) say "refused --- see outcome of previous study". Lets say the great and the good influence to get the study funded i.e. against my advice. FOI is submitted asking for the documentation re this funding award --. Opposition politicians get the soap boxes out and attack our Minister --- wasting public money.
To summarise, I suggest that perhaps sound methodology isn't a threat ---


Hoopoe said:
I believe the reason they achieved some positive results is probably more because they aren't properly controlling for nonspecific effects, rather than the use of a bad case definition that allowed patients in that don't have PEM.
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As per @Brian Hughes I think you could prove any old crap with unblinded studies and subjective outcomes ---

Hoopoe said:
It might be hard to persuade funders to reject studies that lack blinding and use self-reported outcomes because it would imply that many other studies are also bad. A paradigm change that is much larger than ME/CFS would be required. Maybe some way can be found to prevent funding of more bad CBT/GET research that is less likely to encounter resistance?
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The system has some checks & balances --- see my comments above --- we need to "incentivise" our politicians i.e. to not fund crap research!
Hoopoe said:
Maybe a clear statement that patients do not want any research that has characteristics of the typical CBT/GET studies?
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Seems reasonable - one for charities, individuals to lobby politicians on!

Hoopoe said:
I am coming back to the idea of Norwegian model where patients have veto rights to prevent research they don't like.
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As per previous comment ---one for charities, individuals to lobby politicians on!
 
In case it is useful for anybody I emailed the consultation team to ask about what alternative formats are available and how to get them. Their response was

"Alternative formats

PDFs

You can create a PDF of both the Interim Delivery Plan and the Consultation Summary.

To do this, click “print this page” (on the left hand side of the webpage). Then set your printer selection to “Microsoft Print to PDF” or “Save to PDF”. This will save a PDF version to your own device.


A PDF version of the consultation form will be available later today, via https://www.gov.uk/government/consu...es-of-people-with-mecfs-interim-delivery-plan

You should only use this to send your responses if you are unable to use the online survey. We must receive your responses by 11:59pm on 4 October 2023. Responses received after this will not be taken into account. The postal address is given at the end of the document. This is not a Freepost address.


Easy read

An easy-read version will be available shortly, via https://www.gov.uk/government/consu...es-of-people-with-mecfs-interim-delivery-plan


Audio

An audio version of the Interim Delivery Plan is available from [Action for ME's dedicated Soundcloud page here].


Hard Copies

You can request a hard copy by emailing your name and address to mecfs@dhsc.gov.uk. Do not send any other personal information to this mailbox. Once your copy has been despatched, your contact details will be deleted."
 
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