United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

Afternoon sessions

Delivering NSS & DHSC recommendations

Dysregulation

BACME severely affected guide.

Long- Covid CYP & Adults

Outcome measures led by Pete Gladwell

Care & Support Plans

Moving NICEly by someone who runs outdoor wilderness therapy

Mindfulness by a psychotherapist
 
"Dr Stewart qualified as a medical practitioner in 1976 from Guy’s Hospital London and became a Member of the Royal College of Physicians in 1979.
He established his own independent medical practice in Sussex and in London in 1981 specialising in nutrition as well as homoeopathy and became a member of the Faculty of Homeopathy in 1983."

http://www.stewartnutrition.co.uk/company/about_the_author_2col.html
 
MEMarge said:
BACME 2024 Conference
MAY 16 @ 9:00 AM - 5:00 PM
£75.00 – £95.00
We are delighted to announce the BACME virtual clinical professional conference “Delivering NICEly ME/CFS” which will be delivered on Thursday 16th May 2024 via Zoom. The conference will run from 9:00 am through to 5:00 pm.

https://bacme.info/event/bacme-2024-conference/

BOOKING IS NOW OPEN
  • This year’s conference will focus on the most recent NICE guideline for ME/CFS, delivery of services to ensure high quality and most appropriate care for all living with ME/CFS, and related topics.
  • The conference is open to clinical professionals working with people with ME/CFS and primary fatigue conditions including Long Covid.
  • The day will provide a mix of lectures, innovation presentations and workshops with networking opportunities over lunch.
  • Our key-note speaker is Dr Alan Stewart MRCP SAS Doctor Sussex NHS ME Service
  • We have representatives from the Department of Health and Social Care bringing us up to date on the ME/CFS delivery plan.
  • To build on the great feedback from attendees at the 2022 conference, this year’s conference will include more interactivity, more screen breaks, and a wider choice of subjects.
  • Our Patient and Public Involvement work stream have incorporated the patient voice throughout the conference, with thought provoking and innovative music and video presentations.
Will you be attending virtually @Joan Crawford
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Hi,

I'm not a member of BACME. I have attended several conferences in the past and fed back notes and comments.

I am having treatment currently for breast cancer (I have an excellent prognosis so it's more a case of 'get through the necessary'. I may be having treatment that week so I would not be able to attend if that is the case.

I'll take a wee look. From comments already it doesn't look promising but I think it would be good to check out how bad the group think is. :facepalm: And if presenters are able to answer tougher questions ;)
 
“Delivering NICEly ME/CFS”
Even the title of the conference is patronising, with a cutesy attitude to things and a lack of commitment to the guideline.
conference agenda" said:
This year’s conference will focus on the most recent NICE guideline for ME/CFS
Click to expand...
That wording 'most recent' emphasises that fact that guidelines come and go - there's no mention about focusing on actually delivering the guideline.
If the conference had been straight-forwardly titled "Delivering the 2021 NICE ME/CFS Guideline", it would have created a quite different impression.


MEMarge said:
"Dr Stewart qualified as a medical practitioner in 1976 from Guy’s Hospital London and became a Member of the Royal College of Physicians in 1979.
He established his own independent medical practice in Sussex and in London in 1981 specialising in nutrition as well as homoeopathy and became a member of the Faculty of Homeopathy in 1983."
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Oh good grief. Even for BACME, that's incredible in 2024. Who thought it was appropriate to give this man a platform to speak?


And they are still going on about 'dysregulation' - when no one knows enough about ME/CFS to really say anything much about what is dysregulated and how to fix it. Of course, BACME's members are there to save us, by regulating us when we are unable to regulate ourselves.
 
Just had a look at this Severe ME/CFS Resources Archives - BACME

"Primary care would normally be the first contact for people living with severe ME/CFS. It can be difficult for patients and professionals to clarify how to best meet the needs of the individual. However, appropriate intervention can lead to significant improvement in the person’s condition, function and quality of life, enabling greater independence and reduction of burden of care. Primary care staff can provide options for ways to communicate including home visits, telephone calls, video calls and email along with liaising with formal and informal carers with the permission of the patient.

Where it is possible, patients living with severe and very severe ME/CFS should be offered intervention by a secondary or tertiary care specialist ME/CFS service that has experience of working with people who are severely affected. Where such services are not easily accessible, it may be necessary for local primary and secondary care services to seek advice from specialist ME/CFS services in other areas who may be able to provide guidance to local staff."​

So basically, if I turned up in Bath as a newly diagnosed patient for treatment, I'd be in EXACTLY the same position I was in 12 years ago, with exactly the same treatment.

Only it's actually worse,
  • taking into account the issue of 'rehab' and 're-ablement', they can come at me again as a severe patient (which they created in the first place) with the same treatment
  • now my voice is even quieter than it was before, because if I complain, what would be thrown back at me, is that this has been agreed by patient Charities who have no accountability whatsoever for harms caused, as they're not even govt arm's length organisations. With the suggestion that "you're the only one" aka The Post Office Inquiry.
  • DOLs just waiting for those who don't consent and they 'intensify' the treatment.
  • and whatever the outcome due to the bit I've put in bold, if you get worse, it's still your fault!
The DHSC have a played a blinder here and all behind closed doors. Well done! All our rights have been completely dismantled. The only way now to complain is via a legal case, because the PHSO will simply refer to the NICE Guidelines and whatever else they've concocted under the delivery plan via NHS England training.

Lost for words

ETA: For those not near a service, I notice these people mentioned earlier in the thread, now handle post viral long covid, and other 'fatigue' illnesses - they travel About us — Vitality 360

This post has been copied to
United Kingdom: BACME Guidelines for Severe ME, 2019 and 2024 update
 
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Peter Trewhitt said:
In relation to BACME, who are more likely to be clinicians working with face to face patients, rather than the great and the good of research and service planning who have repeatedly failed ample opportunities to address the research issues, I suspect the idea that rehabilitation necessarily involves identifying the level of current optimal functioning then trying to push beyond it in suitably sized small increments is so deeply ingrained that it is intellectually very difficult to move beyond.

It is fair to ask why they don’t notice that for a large percentage or even a majority, this doesn’t work or indeed makes their patients worse. I suspect there are reasons it is not as obvious to the clinicians than you might think: people are not going to complain to nice caring therapists who are obviously working hard and trying their best; the clinicians tend to provide input in relatively short fixed term blocks missing medium and long term fall out; patients desperately want to get better and in the short term a keen to believe things are getting better; when undertaking rehab the patients may drastically cut back on other activities supported by work, carers or family, only falling back once intervention is over and real life hits; most UK clinics only see mild and moderate patients so their clinicians have no idea what severe ME actually looks like; those patients that experience dramatic sudden long term deterioration as a result of intervention, drop out and are never seen by the clinicians again; clinicians are prone to toxic positivity, indeed it is part of their role to create a supportive positive environment, but this means they focus on apparent success but fail to recognise long term deterioration is also possible (a false belief that improvement arises because of intervention, but deterioration comes from the condition or the patient).
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Correct, they don't follow up. On completion of the 6 week course, clinic wrote to my gp praising how well I had engaged with the treatment, even before they wrote the letter I was already on my back and never worked again. My gp replied that unfortunately I was continuing to deteriorate and that was likely to be the outcome. They still didn't follow up, even when they didn't receive my 6 month follow up questionnaire.
 
Hutan said:
“Delivering NICEly ME/CFS”
Even the title of the conference is patronising, with a cutesy attitude to things and a lack of commitment to the guideline.

That wording 'most recent' emphasises that fact that guidelines come and go - there's no mention about focusing on actually delivering the guideline.
If the conference had been straight-forwardly titled "Delivering the 2021 NICE ME/CFS Guideline", it would have created a quite different impression.



Oh good grief. Even for BACME, that's incredible in 2024. Who thought it was appropriate to give this man a platform to speak?


And they are still going on about 'dysregulation' - when no one knows enough about ME/CFS to really say anything much about what is dysregulated and how to fix it. Of course, BACME's members are there to save us, by regulating us when we are unable to regulate ourselves.
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I think there was another item/session of another conference where they used ‘ly’ at the end of Nice

I couldn’t be doing with it at the time but of course it’s two fingers up at Nice

they mean ‘sort of adjacent and nodding to’ at best.

To me it smells / sells like people with a supply-led/ what do they fancy doing as their jobs attitude who’ve worked out how to play the game on getting grants, funding , ticking box on any regs. Ie not the attitude at all.


I can’t tell if the session is selling the outdoors or how to blag claiming it’s compliant to commissioners/ ICBs handing out cash (for any old thing) ie the 'activity' is just the vessel through which to deliver that real message. Whatever it’s for?

when someone’s done such a good job of spreading nasty rumours about those who least deserve it they’ve worked out people will actually spend lots of money to other people on crap just to ‘deal with them’ even tho the excuse for real treatment is apparently resources.

they’ve made us look so bad it’s not even just no funding . Why does no one stand back and take a hard look at them and who they are I wonder?
 
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Hutan said:
“Delivering NICEly ME/CFS”
Even the title of the conference is patronising, with a cutesy attitude to things and a lack of commitment to the guideline.

That wording 'most recent' emphasises that fact that guidelines come and go - there's no mention about focusing on actually delivering the guideline.
If the conference had been straight-forwardly titled "Delivering the 2021 NICE ME/CFS Guideline", it would have created a quite different impression.



Oh good grief. Even for BACME, that's incredible in 2024. Who thought it was appropriate to give this man a platform to speak?


And they are still going on about 'dysregulation' - when no one knows enough about ME/CFS to really say anything much about what is dysregulated and how to fix it. Of course, BACME's members are there to save us, by regulating us when we are unable to regulate ourselves.
Click to expand...
Here’s the other thing

I don’t think BACME members do want to save us or help us - it's never been about the people or patients (just pawns).

I don’t think that their programme even reads like that anymore

I do think they are deluded by their own sales spiels and their job titles saying what their intention is supposed to be

Is there any other condition that has a group who won’t get off their backs in this way and has utterly believe their patients should not ever be listened to/lest they speak for them and how dare said individuals think they can have a real voice themselves /that’s the attraction? And who says such horrid things about the people they claim to be their reason for being because they care rather than control their access to basic rights (like who they are and staying safe)

at this point there’s no excusing it if they even believe what they say and write in their manifestos. It’s like having panting hunters simply obsessed with one thing: we won’t let them have not even basic medical care or respect , even after an arduous guideline process

there is no real sanity or explanation behind it other than basic umbrage of how dare anyone have said what we were doing wasn’t right and ‘we’ll do what we want thanks’

they can’t possibly understand it was peoples bodies showing evidence what they did harms and doesn’t work and not someone ‘choosing to misbehave’ which is the accusation they got away with using for their own cognitive dissonance. Great get out of jail free card for the callous pretending if you break someone’s body with your treatment there might be such a thing as them having been thinking wrong and that’s what really caused it. Where / which type of people have I heard that type of snap-back retort being used and the thought process of why it’s always their fault?

it’s frankly scary and I think that even if someone who didn’t have ME but did have empathy (the skill of insight and theory of mind not what they think it is ‘niceness’) and experience of bad organisational behaviour and looked in the last 8yrs of this they’d find it terrifying how unchecked how bad people can get.

I can’t tell whether this is fervour or panic-blagging (just chuck out anything that we can sell as new to pretend we have an offering)

what kind of body has a fixated focus where the one rule is that it must not be delivering the guidelines properly?

what a strange bunch and example of human nature

as Treadway suggested: when not being watched/observed (as a sector cos no one cares about pwme they think) - it attracts two types of people.

well in the land of professionals that is supposed to be because you are trustworthy and responsible. But I think there is an issue these people have towards pwme , exampled here, that makes them not capable of being safe and appropriate when trusted with that vulnerable group?
 
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rvallee said:
Can't say I see a real difference here, these people are all the same to me. One pseudoscience. Another pseudoscience. Makes no difference.
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Invited in by a bunch of people metaphorically chasing us with a stick as we try to escape saying to outsiders 'the bastards don’t know what’s good for them honest, we do this because we care, why do they keep saying what we do harms and doesn’t work the horrible, mad, scroats'. At least they’ve all the nice newbies for the first few weeks until they disappear with a nod and leave or get made more ill
 
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and for the 'sleep' presentation:

Ms Kirsty Vant (gold.ac.uk)

"Biography
Kirsty Vant is a public health nurse and CBT-I therapist, she is currently completing a part-time psychology MRES. Kirsty is interested in the relationship between health, well-being and sleep, she is currently investigating the impact of sleep knowledge, beliefs and behaviours on sleep quality in young adolescents."


They are keen to get rid of their false beliefs and update everyone's knowledge fast aren't they?
 
Joan Crawford said:
I am having treatment currently for breast cancer (I have an excellent prognosis so it's more a case of 'get through the necessary'. I may be having treatment that week so I would not be able to attend if that is the case.
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All the best, @Joan Crawford. :hug:

bobbler said:
Is there any other condition that has a group who won’t get off their backs in this way...

at this point there’s no excusing it if they even believe what they say and write in their manifestos. It’s like having panting hunters simply obsessed with one thing: we won’t let them have not even basic medical care or respect , even after an arduous guideline process

there is no real sanity or explanation behind it other than basic umbrage of how dare anyone have said what we were doing wasn’t right and ‘we’ll do what we want thanks’
Click to expand...
They think they own us and nobody, not even the most senior levels of medical science, and certainly not their victims patients, have any right to say otherwise. Which is the ultimate in grotesquely false beliefs.

It is brutal Kafkaesque insanity, in full public view, and nobody with any power over them seems to be able to stop them, or even want to.

The levels of sustained systemic failure and corruption of basic governance required for this to not only happen but to keep happening is truly breathtaking. I would not have believed it if I had not seen firsthand for decades.

Yet here we are. Sanity and decency are not only not required, they are actively rejected and assaulted. Self-serving marketing and propaganda rule supreme.

BACME have always been, and clearly have every intention of going on being, completely unfit for purpose and hostile to patients needs at every level. The utterly shameless hijacking and perversion of all due process and science, and patients' lives, continues wholly unabated. The BPS gravy train rolls right on, unhindered by [checks notes] anything.
 
Jonathan Edwards said:
What a mess.

How to carry on as if nothing happened it seems.

What on earth has outdoor wilderness movement got to do with NICE guidelines for ME/CFS?
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OK I had to double-check but this seems to be potentially Jess Sands who is running these sessions: Jessica Bavinton
Our team — Vitality 360 you'll note it is Jess Sands (Bavinton), Founder Director of Vitality 360

WHich is the same name as the physio from the ME Association article: Physiotherapy journal urges gentle approach to prescribed exercise for people with ME - 19 January 2011 - The ME Association

mentioned by me in the following thread: UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023 | Page 23 | Science for ME (s4me.info)



Julia Sands who is running the session on adventure too is described here: "I Am She" Peak Pilgrimage with Julia Sands · Eequ

there is a brief description under this name on the page above, which matches the description of the JUlia with a different surname (Julia Gillick) on the website: Our Story — ipse wilderness

Assuming it is the same person then the description is: "ex-army officer, teacher and expedition leader with a background in mentoring and group facilitation"

and Founder of Ipse Wilderness

EDIT: just checked companies house, and it is Julia Sands who is the officer and person with significant control for that business. It began/incorporated in September 2022

which sells 'guided adventures'. The testimonial used says: "“A walking-talking adventure into the wilderness. A unique opportunity to use the landscape as a mirror for the soul.”"

On therapy on that website is here: walking and talking therapy for mental health — ipse wilderness

Though I assume this isn't the same therapy as the 'adventure therapy' the following page gives an insight for the walking and talking therapy 'theory', I've cut and pasted one bit to give a sense.

"Walking and Talking
Walking and talking therapy for mental health at the same time is not a new invention. Nothing could be more natural than taking a turn about the garden/block/park, arm in arm with a good pal, setting the world to rights. I know many people who call it a ‘walkandtalk’, as in, ‘shall we go for a walkandtalk on Saturday?’ I had a friend at school who swore I had worn a dent in her shoulder by resting my hand there perennially as we perambulated the school grounds, sharing gossip and teenage woes. But the zeitgeist is such that getting outside, away from screens and technology and into nature is being recognised as not just a nice idea, but a mental health strategy. If during that restorative and calming walk we also get to chat and share about what’s going on and how we are feeling, then surely the psychological benefits will be compounded. Thankfully, walking and talking therapy for mental health is flourishing, and the time is absolutely ripe."
 
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Hutan said:
Nice work @bobbler

Session: Moving NICEly - provided by Jess Sands & Julia Sands IPSE Adventure therapy

Jessica Bavinton/Sands is as pro-GET as it is possible to be.
Bavinton, Darbishire, White, 2004, PACE trial GET for CFS Manual for Therapists
https://www.qmul.ac.uk/wiph/media/t...lth-wiph/documents/5.get-therapist-manual.pdf
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of course she is pro-GET

Looks like she would need to change the name of her company from 'Vitality' otherwise

her bio on: Our team — Vitality 360

"Jessica is the Founder Director of Vitality360. Her vision was to create a range of personalised therapeutic services that provide extraordinary results and unexpected vitality; delivered by a happy team of expert Clinicians committed to making a profound difference to people’s lives.

As a specialist Physiotherapist, she has been involved in several national services and research projects, committees and teaching programmes in the fatigue and pain rehabilitation field for 14 years. She has worked extensively in the NHS and in private settings. Vitality to her means a love of life, a confidence in one’s ability to manage health and the changes life brings; a hopeful future, and an alignment with what’s important to each individual."
 
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