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

As far as I can make out, none of them are.

Practitioners are the modern thing! Doctors are expensive and not all of them stick to the script.

 

Could you give an example of a "Practitioners" e.g. a nurse, physiotherapist ---? Apologies if you've already provided this information.

 

@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.

 

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

….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.

 

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

https://www.youtube.com/watch?v=LfpcmNFKJio

) along with vested interests the situation is dangerous to the patient and harm is all around us.

 

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

 

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?

 

Never hurts to ask...?

https://twitter.com/user/status/1693900089436061854


https://twitter.com/user/status/1693901884623302979

 

<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/ >

 

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/

 

The Elephant in the Room 'funding'.... and not just funding for research!
NHS England....

 

Hard copy received (after being chased on Thursday!)

 

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?

 

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.

 

A random hard copy survey turned up in the post today