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.

 

(UK)
New guidance on supporting pupils with ME and CFS

Schools should consider ways to ‘modify and tailor adjustments’ for pupils with ME and chronic fatigue syndrome, says the government in new plan

https://www.tes.com/magazine/news/general/school-guidance-support-pupils-me-chronic-fatigue-syndrome

 

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.

 

Only one GP registered with the GMC under that name. But I think he may be retired...https://www.thepetitionsite.com/en-...-jha-at-simmondley-medical-practice-glossop./
Retired from doctoring perhaps, from campaigning...perhaps not?

 

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

 

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.

 

News of this publication/consultation just came out in this mornings The King's Fund general health policy alert email

 

Jo @cfs_jo on Twitter has given permission for me to repost this email response to her series of questions:

 

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.

 

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 ---

As per @Brian Hughes I think you could prove any old crap with unblinded studies and subjective outcomes ---

The system has some checks & balances --- see my comments above --- we need to "incentivise" our politicians i.e. to not fund crap research!

Seems reasonable - one for charities, individuals to lobby politicians on!

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."

 

Does homo sapiens have a new cousin? Are people with ME about to get better treatment? And is three dates in one day too many? @OllyMann joins @holdenfrith, @leafarbuthnot and @harriet1marsden on The Week Unwrapped podcast.

https://twitter.com/user/status/1689971280538107904