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

Dolphin said:
As I have said before, this underfunding isn’t simply from taxpayer money; the amount that has been raised privately has also been relatively small given the numbers affected and how serious the illness is.
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A large part of that is a product of BPS attitudes. People who could help fund raise and be ambassadors are ashamed to be associated with ME/CFS. And many families and friends turn away from people with ME/CFS, also feeling the shame and not wanting to facilitate false illness beliefs. People with ME/CFS who are struggling to cope without much support typically have little time, energy and money to organise fundraising.

Those BPS attitudes have been incredibly effective in preventing progress towards better research.
 
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@FMMM1

“Practitioner” is a vague term meaning someone who does something regularly.

Someone who has trained themselves, or is or was, superficially or otherwise, trained by others in some field or other. Could be anything.

Whenever and wherever the terms ‘Health Care Provider’ or ‘Practitioner’ or ‘Trainer’ or ‘Facilitator’ or ‘Researcher’ or ‘Coach’ are used as titles for individuals who work in a particular field capitalised, or uncapitalised in reference to a general group working in this field or clinic- rather than referring to the specific training, or lack there of, of the persons assigned to perform these roles- it is precisely this non-specificity that is why such non-specific terms and titles are used.

You aren’t supposed to know who exactly is providing this service. You aren’t supposed to know whether or not these providers could be said to be well qualified enough to take such a responsibility.

The authorities choosing to use vague terms for their providers, need you to accept whatever you’re given no matter the quality. To make their offer palatable they require you not to find out exactly what you’re being offered. How under qualified your particular “practitioner” might be relative to others, or to widely held expectation of access to “high quality” “evidence based” provision.


None of your business what the actual specifics of the qualifications of the person whose “treating” or “training” you are.

Toss an (English) coin.

Heads you get a Physiotherapist. Extensive qualifications on the body at least. Probably not on your specific medical disorder. But still. You win.


Tails you get a Health Care Practitioner. Who knows what they know or who told them it?
You lose.
 
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Ash said:
Toss an (English) coin.

Heads you get a Physiotherapist. Extensive qualifications on the body at least. Probably not on your specific medical disorder. But still. You win.


Tails you get a Health Care Practitioner. Who knows what they know or who told them it?
You lose.
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Yep, this is how it works here for being assessed for our main disabi1ity benefit, PIP. When it was the previous disabi1ity 1iving a11owance you used to be assessed by a medica1 doctor.

https://www.benefitsandwork.co.uk/news/pharmacists-now-do-pip-assessments
 
Ps
Ash said:
@FMMM1

“Practitioner” is a vague term meaning someone who does something regularly.

Someone who has trained themselves, or is or was, superficially or otherwise, trained by others in some field or other. Could be anything.

Whenever and wherever the terms ‘Health Care Provider’ or ‘Practitioner’ or ‘Trainer’ or ‘Facilitator’ or ‘Researcher’ or ‘Coach’ are used as titles for individuals who work in a particular field capitalised, or uncapitalised in reference to a general group working in this field or clinic- rather than referring to the specific training, or lack there of, of the persons assigned to perform these roles- it is precisely this non-specificity that is why such non-specific terms and titles are used.

You aren’t supposed to know who exactly is providing this service. You aren’t supposed to know whether or not these providers could be said to be well qualified enough to take such a responsibility.

The authorities choosing to use vague terms for their providers, need you to accept whatever you’re given no matter the quality. To make their offer palatable they require you not to find out exactly what you’re being offered. How under qualified your particular “practitioner” might be relative to others, or to widely held expectation of access to “high quality” “evidence based” provision.


None of your business what the actual specifics of the qualifications of the person whose “treating” or “training” you are.

Toss an (English) coin.

Heads you get a Physiotherapist. Extensive qualifications on the body at least. Probably not on your specific medical disorder. But still. You win.


Tails you get a Health Care Practitioner. Who knows what they know or who told them it?
You lose.
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….Of course it’s not actually a 50/50 chance for you.

So a better metaphor would be a cauldron of soup. Served hot and streaming. But it’s a few days old, reheated.

The soup is advertised by its most appealing and nutritious ingredients, not the main ingredients by percentage. Here the Lentil and Red Pepper, or Leek and Potato represent the Nurse and Physiotherapist. The practitioners, plural and multiplying, are the water. This particular soup has been heavily watered down. In order to maximise profit margins for some, the private contractors, and minimise expenditure for others, the public bodies.

The would be eater or rather drinker of this Soup is you, the Patient. Eager for nutrients and restoration properties. You are denied any other food. It’s the stale watery soup for you. Or nothing. You starve. Some of you will choose to starve, smell and sight of it is all too revolting. Some of you will hold your nose gag it all down. Some will persevere some will do their best to survive on this gruel, but the soup reheated once too often, will poison them. Some will be lucky and scrounge up something better on the black market.

The above response and outcomes aren’t too relevant to the direction of travel for this soupy project. Because the person who eats is not the person who is marketed to. That would be the purchaser’s consumers or commissioners. It only needs sound an appealing to them.

In the vast majority of cases a fresh green garnish is not usually considered necessary. If there is a garnish, it will likely be limp or bitter. The garnish would be a Dr, of medicine.
 
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AknaMontes said:
I understand they have a key role in making sure doctors are safe to practice - this is what they are absolutely failing to do with regard to ME patients and the long standing damaging GET disaster. Because they are 'respecting the right of a doctor to believe a disease does not exist' they are failing to take into account the risk of deterioration through GET and the huge file of GET harms, and in general terms, medicine today is utterly failing to recognise the harm caused by medical gaslighting of any kind in terms of breaking down family and carer relationships and often intense psychological stress caused. This, of course, does not seem to have been researched, because nobody would want to know what happens to patients once they leave a consulting room and go home to cynical, rejecting and blaming family members. I've seen people with ME neglected to a dangerous level by relatives who have believed the doctors when they were told there was nothing wrong with their relative.Relatives can be (wittingly or unwittingly) co-opted into supporting patients or just as easily abusing patients depending on what the doctor tells them. These are the safety issues the GMC and medicine in the UK generally seem to be ignoring?
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This is compounded by allowing bad research or research written in a way to support Government preferred corporate dictions (which is what we are seeing with Covid enquiry ) along with vested interests the situation is dangerous to the patient and harm is all around us.
 
Hutan said:
not wanting to facilitate false illness beliefs
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My usual (off topic?) rant ---
Totally weird but certain types of "therapists" tell people that you shouldn't engage with biomedical science since that reinforces your "false illness beliefs" - which, of course, are the source of your illness (circular argument?)!

Lets assume that it is psychological - there's no objective evidence that psychological treatments work! NICE decided it wasn't "cost effective" --- a polite way of saying it doesn't work! So tell the psychologists to --- go away and come back when they have objective evidence that a psychological intervention works.

Also, if they want to get public funding (TAX) to test a psychological intervention then they must include objective indicators like Actimetry/FitBit type devices.

EDIT - check out Jonathan's recent post* -- think some of the folks I'm referring to haven't been funded -- they're a tad annoyed -- after all -- why wouldn't they be funded --- lack of evidence that it works?
*https://www.s4me.info/threads/parit...a-psychological-profession.34831/#post-489797
 
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Andy said:
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

…….
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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A number of us on twitter/X are comparing notes as we need hard copies to even start reading the consultation. We emailed the ME/CFS unit as above (11 August) but no-one has received their copy in the post yet.

Of course a delay may have been caused by a lack of physical copies ready to be posted by the unit and them probably only working part time.

Has anyone heard anything please?
 
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Hutan said:
As I have said before, this underfunding isn’t simply from taxpayer money; the amount that has been raised privately has also been relatively small given the numbers affected and how serious the illness is.
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A large part of that is a product of BPS attitudes. People who could help fund raise and be ambassadors are ashamed to be associated with ME/CFS. And many families and friends turn away from people with ME/CFS, also feeling the shame and not wanting to facilitate false illness beliefs. People with ME/CFS who are struggling to cope without much support typically have little time, energy and money to organise fundraising.

Those BPS attitudes have been incredibly effective in preventing progress towards better research.
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<deleted as it was a bit off-topic. I have posted it here instead:
The underfunding of ME/CFS research isn't just by governments; a lack of money has also been raised privately for research
https://www.s4me.info/threads/the-u...lso-been-raised-privately-for-research.34897/ >
 
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Dolphin said:
From ME Research UK:

“My full reality: the interim delivery plan on ME/CFS – Our response part 1” to Department of Health and Social Care (DHSC)

https://www.meresearch.org.uk/interim-delivery-plan-our-response-1/

“The plan suggests that failures in ME/CFS research are due largely to researchers themselves, rather than the chronic underfunding that has hampered them for years”
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From ME Research UK:
My full reality: the interim delivery plan on ME/CFS – Our response part 2

https://www.meresearch.org.uk/interim-delivery-plan-our-response-2/
 
Dolphin said:
From ME Research UK:
My full reality: the interim delivery plan on ME/CFS – Our response part 2

https://www.meresearch.org.uk/interim-delivery-plan-our-response-2/
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While the plan does highlight critical issues for biomedical research into ME/CFS, it actually adds little new in the recommendations made. The central issues facing biomedical research into ME/CFS identified by the plan are actually well known, and have been for decades.

These issues were narrated in the ‘Inquiry into the status of CFS/M.E. and research into causes and treatment’ – the 2006 Gibson report – which cast a critical eye on progress made to that point in implementing the research recommendations of the 2002 ‘Report of the CFS/ME Working Group’ to the Chief Medical Officer.

The late Dr Gibson’s Report, like the current interim delivery plan process, received evidence in the form of documents, letters and oral submissions from major researchers in the field and from people with ME. It concluded that the UK “must invest massively in research into biomedical models of this illness”. It continues:

“This group believes that the MRC should be more open-minded in their evaluation of proposals for biomedical research into CFS/ME and that, in order to overcome the perception of bias in their decisions, they should assign at least an equivalent amount of funding (£11 million) [equating to over £26 million in 2023 pricing] to biomedical research as they have done to psychosocial research. It can no longer be left in a state of flux and these patients or potential patients should expect a resolution of the problems which only an intense research programme can help resolve. It is an illness whose time has certainly come.”

The above quote from the Gibson Report appeared under the heading of ‘The Immediate Future’. Seventeen years later and research into ME/CFS remains underfunded in terms of disease severity and prevalence.
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Tilly said:
This is compounded by allowing bad research or research written in a way to support Government preferred corporate dictions (which is what we are seeing with Covid enquiry ) along with vested interests the situation is dangerous to the patient and harm is all around us.
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:emoji_clap:
 
JellyBabyKid said:
Hard copy received (after being chased on Thursday!)
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Well done that’s great!

It looks like you can download and print the form for yourself then post hard copy back .

This is the only other option displayed next to filling it out online and submitting electronically.

Maybe I missed something somewhere?
 
Ash said:
Well done that’s great!

It looks like you can download and print the form for yourself then post hard copy back .

This is the only other option displayed next to filling it out online and submitting electronically.

Maybe I missed something somewhere?
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You can convert to pdf and print. There's a box on the 1st page of the survey, and instructions. I found it today: it may have been added.
 
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