It’s basically gossiping,
Exactly, that's the level. But with power they shouldn't have creating a sense of entitlement or idea it makes them look 'clever' to suggest they spotted something that maybe isn't there and write it in notes rather than offering options quietly - some of these things can cause massive life-long implications by allowing paths by which said gossip (or excuses or worse) can be taken as rote and inserted without question or assessment onto someone's record, and could even start other processes.

As an observation not specific to BACME there is an issue that occurs often in unsupervised positions where people have a specific job but decide they are more interested in doing something else instead. It has caused me to miss out on all sorts of incredibly important things where for example x was supposed to just provide y practical support which would have taken an hr, but instead 'because their interest is z' they are dangling y support they are supposed to give as a carrot whilst weaponising imposing z that they are neither qualified for nor supposed to be doing.

I'm shocked that these documents do not all start off with huge underlined paragraphs at the top clearly demarcating the line they cannot cross and the purpose ie if it is about them understanding a condition in general and being aware of what they can do/change in how they do things etc. in order for it to be allowed.
 
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Looks like BACME are expanding their' fatigue 'empire..

It’s basically gossiping,

I am still working out if BACME set the local trend or followed suit. But yes, the local labels of mental illness had to be removed so they were already replaced with local labels of neuro-divergence, by administrators and call-handlers, with no evidence at all, and not a physio in sight

Obviously, as usual, an establishment eventually needs to formalise its most embarrassing informal procedure, if it must persist in its perseverance. The most questionable establishment now feels compelled to "legitimise" its gossip all over again. So a diagosis can be backdated to birth by a customer service. Its even better than the changeling child theory.

One will still be patronised or reviled as a result. Excommunicated. Denial of service ongoing.
 
Vic Harbottle is a paediatric physiotherapist
So physios now expert re neurodivergence ....
I just looked her and the dept up and it is called 'persistent fatigue': https://www.newcastle-hospitals.nhs...ren-and-young-people-with-persistent-fatigue/
and yet it is clearly where those with ME/CFS get sense because it is talked about on the page - in fact I'd say this is where the issue is that they are trying to pretend they are differentiating it whilst they aren't other than a brief one-liner talking about 'PESE'

And at the bottom of this page there is a video:


Which would work for a drinking tea bingo of drink a sip each time you hear the word 'fatigue' and that word seems to be being said in a strangely precise way every single time too.

What on earth does a fatigue video have any place in being near an ME/CFS page.... unless you can't/won't understand what ME/CFS is?

I got quite outraged towards the second half as they started using things that were incorrect and putting them forward as if facts about how the body works - suggesting energy-wise you 'could end up also using the next day's energy too' , except not acknowledging PEM of course the whole thing doesn't make sense but that just skirt over not squaring the circle (to describe what happens due to this and why) hoping noone notices.

All of course pretending to be very sympathetic 'at how it is being made to sound simple in how to manage fatigue but of course it isn't' - I really think the health law needs to start looking at Grey's law and wilful ignorance and banning the whole facade of good intentions and trust us because we put something making us sound like we are nice (so that's OK because what we are suggesting couldn't do harm then) etc.

PS I can almost smell the politics coming off this (small 'p' sort of) regarding it feeling like some might have behind the scenes a push for undermining any move from the old model other than just hiding the illness under fatigue or something else and some having to justify to themselves they are doing their best within this without 'upsetting the apple cart' is OK. But maybe that is me.
 
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I got quite outraged towards the second half as they started using things that were incorrect and putting them forward as if facts about how the body works

I didn't bother to listen for more than 30 seconds. This is a caricature of the 'physio as pseudo-expert' phenomenon where physios spout off about physiology that they understand nothing whatever about. It could be a Monty Python sketch, or even Michael Bentine.

This is why you cannot afford to ask for 'special ME/CFS physios'. Even the Bateman Horne lady who presented to ForwardME acknowledged that if you ask in a physio you are asking for trouble. Except that, in that case, it is just one sort of physio-babble against another sort of physio-babble.
 
I just looked her and the dept up and it is called 'persistent fatigue': https://www.newcastle-hospitals.nhs...ren-and-young-people-with-persistent-fatigue/
and yet it is clearly where those with ME/CFS get sense because it is talked about on the page - in fact I'd say this is where the issue is that they are trying to pretend they are differentiating it whilst they aren't other than a brief one-liner misinterpreting 'PESE'

And at the bottom of this page there is a video:


Which would work for a drinking tea bingo of drink a sip each time you hear the word 'fatigue' and that word seems to be being said in a strangely precise way every single time too.

What on earth does a fatigue video have any place in being near an ME/CFS page.... unless you can't/won't understand what ME/CFS is?

I got quite outraged towards the second half as they started using things that were incorrect and putting them forward as if facts about how the body works - suggesting energy-wise you 'could end up also using the next day's energy too' , except not acknowledging PEM of course the whole thing doesn't make sense but that just skirt over not squaring the circle (to describe what happens due to this and why) hoping noone notices.

All of course pretending to be very sympathetic 'at how it is being made to sound simple in how to manage fatigue but of course it isn't' - I really think the health law needs to start looking at Grey's law and wilful ignorance and banning the whole facade of good intentions and trust us because we put something making us sound like we are nice (so that's OK because what we are suggesting couldn't do harm then) etc.

PS I can almost smell the politics coming off this (small 'p' sort of) regarding it feeling like some might have behind the scenes a push for undermining any move from the old model other than just hiding the illness under fatigue or something else and some having to justify to themselves they are doing their best within this without 'upsetting the apple cart' is OK. But maybe that is me.
“End up using the next days energy too” oh my days. I can’t even.

In my previous job I encountered obviously neurodivergent people in their 50s who were never diagnosed. If they were at school today, they absolutely would be.
I always tried to quietly accommodate their differences to support them. I would however, never never have presumed I should give a talk to other managers about how to spot neurodivergent staff!
 
My news is what I found out today: BACME claims all the "specialist" ME/CFS clinics since 2004. On a central budget, investing £8,500,000 (by now UK-audited to re-plan all primary care & dedicated ME/CFS clinics)

Jonathan Edwards said: I thought this paragraph from a BACME document was informative:

BACME said:
A Brief History of CFS/ME services within NHS

In May 2003, it was announced that a central budget of £8.5 million would be released to the NHS in two phases to allow stepped development of CFS/ ME services in England.

As part of this initiative 13 centers and 36 local teams for adult services and 11 specialist teams for children and young people were set up between 2004 and 2006...

These services now form part of the British Association for Chronic Fatigue Syndrome/ ME, in partnership with patient charities and services that were already established prior to 2004.

They lie. Our Group predates BACME (1996). Ww approached BACME when we were embroiled in 2022 Service Development for Suffolk. They were 'interested' ..but refused my request to engage and attend AGM.

That there is discussing the Open Letter to BACME (re ME/CFS Guide to Therapy 2025). This here News thread reveals BACME also sheltering the assorted generic odd-bods who won't implement NG206.

Of course, its exemplary Persistent Fatigue Clinic treats CFS not ME/CFS. And it treats diabetes with all the other "fatiguing" conditons. So it will assess, treat and review ME/CFS "fatigue" too. But it is not a dedicated ME/CFS clinic. It is generic. That is not NICE-compliant.

So Newcastle's Persistent Paediatric Fatigue clinic can tell you - twice - "you might like to ask your doctor to investigate, if you have one".

Its what the lady said. The other lady said it too. On video. They plan to tell you twice. In the 2nd half of the video, the 2 ladies repeat what they said in the 1st half. Sounding sing-song like nursery rhymes will follow.

Respecting your paediatric autonomy, they don't propose to refer your paediatric case for investigation, let alone refer for a dedicated ME/CFS diagnosis, assessment, review, flare or relapse. Not NICE-compliant innit

Or if they, did I missed it. I don't know how Julia Newton next door tied in. But I as found out today - all ME/CFS clinics belong to BACME. Says BACME. That was news to me. I had thought BACME was a life-style chosen by the individual clinician
 
Or if they, did I missed it. I don't know how Julia Newton next door tied in. But I as found out today - all ME/CFS clinics belong to BACME. Says BACME. That was news to me. I had thought BACME was a life-style chosen by the individual clinician

It may be written into job descriptions for specialist services staff. Though this was back in the 1990s, as a clinical lead for a specialist communication aid service it was seen as part of my role to participate in the national communication aids special interest group that was very similar in function to BACME, which primarily consisted of people employed by the specialist aac centres. It was the employing health trusts that funded our time, travel, meeting venues, admin, postage, etc.

So though it is presumably individual clinicians rather than specialist services who are members of BACME, those services may formally nominate some staff members to join.
 
It may be written into job descriptions for specialist services staff ... clinical lead

... role to participate in the ... special interest group that was very similar in function to BACME

.. primarily ... people employed by the specialist .. centres.

It was the employing health trusts that funded our time, travel, meeting venues, admin, postage, etc.

... services may formally nominate some staff members to join.

Ah, thankyou that could explain it. And BACME could be partly funded from the UK's dedicated ME/CFS budget. Ouch. But not for all staff to participate. Those commercial ME/CFS clinics also chip in. For a fee, a commercial consultant can advise BACME & NHS hospitals on BACME's new tube-feed Guide in case of ME/CFS. Neuro-divergent cases to follow.

Sounds like the NHS can pay for:

- participation in an out-sourced, arms-length, special-interest group for the ME/CFS-clinics' shy investment program

- outsourced commercial consultancy on tube-feeding ME/CFS patients in hospital (possibly a BACME member)

- out-sourced commercial consultancy on the BACME Guide for tube-feeding ME/CFS patients (Neuro-typical)

- out-sourced consultancy on neuro-divergent ME/CFS - after all ME/CFS is a generic BACME clinic speciality.

Holistic. Integrated. Multi-disciplinary. Generic. That is not dedicated. Its generic pacing-up.

BACME members can also have big commercial interests and get paid for outsourced ME/CFS advice to hospitals on how not to tube feed. Such clinics can pay BACME for the endorsements and get paid to help write the tube-feed guide. Audits showed how much, in ME/CFS budgets.
 
And at the bottom of this page there is a video:

I didn't bother to listen for more than 30 seconds. This is a caricature of the 'physio as pseudo-expert' phenomenon where physios spout off about physiology that they understand nothing whatever about. It could be a Monty Python sketch, or even Michael Bentine.
Gawd. Yes! Though I think the set up, awkward off-camera eyeline and jump edits were more in the style of Mr Cholmondley-Warner and Grayson.
 
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