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

bobbler said:
But I think that any single one of them who is trying to claim they don't harm because they adjusted the delivery is actually covered by the guidelines no treatments based on the model of false beliefs or deconditioning. That isn't hard to understand.
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Which is why I give them no more quarter. There is literally no excuse any more for them to hide behind.

They know what they are doing.
 
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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I have used to BACME contact form to send the following request:

Please can you allow people with ME/CFS to attend your virtual conference on 16th May. I am a pwME and a committee member of the Science for ME forum. I would like our members to be able to attend and discuss the presentations at the conference, as the work of BACME members directly affects our lives and health. I think we should have a right to know what professionals who will be treating us say about our disease. Thank you.
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Trish said:
I have used to BACME contact form to send the following request:
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I have had a reply:

Dear Trish
Many thanks for your email and your interest in the BACME conference. Please accept our apologies for the delay in replying: I provide admin support part-time, and BACME's members volunteer their time around busy clinical roles.
Your request has been shared with members of the conference planning committee. The conference on 16th May has been developed with input from the Patient and Patient/Carer Representatives on the BACME Board and is intended for clinicians. There will be two Forward ME members attending who can share information with people living with ME/CFS. We have therefore decided that, for this year's conference, we are not able to accept more attendees who are not clinicians. We always include Patient and Carer videos in the Conference format.
Summary information from the conference will be posted on the BACME website. As there has been some interest from people living with ME/CFS to attend BACME conferences, we will take this back to the BACME Board for consideration when we plan future conferences and events.
Best wishes
BACME Admin
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I am considering a response. I probably don't have the energy to pursue this further. At least the subject has been raised and put on their agenda to consider for future conferences.

Edit: I have replied thus:

Thank you for replying. I find this very disappointing. It inevitably gives the impression that your members want to be able to say things they would not dare say in the presence of patients, apart from the select few of your choosing. In the new era with the 2021 NICE guidelines, I think it's imperative that a wider group of patients are able to hear what is being said about our care by people paid by the NHS to provide that care, and to provide critical input into your organisation's documents, training and conferences. I hope future conferences will be more open.
Trish Davis
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Well done @Trish

A bit bizarre that they consider two people on Forward ME adequate to tell all the patients about what went on - a bit five loaves and two small fishes it seems.

This is supposed to be the era of 'collaboaration' much as I am sceptical about the term.

But the point has been made.
 
Sean said:
NATO compliant, I presume?
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Indeed. Hysterics meets Nato. In 2002 Wessely did actually manage to create a NATO sponsored meeting where he'd invited Elaine Showalter to speak, to discuss 'the social and psychological implications of the new terrorism'.


Elaine Showalter in 'Hystories Revisited' (taking a break from Literary Criticism and bashing ME and GWS patients).
Edit correction. Showalter does not mention ME once in this reflection on her book Hystories, amazing, as it was framing ME as mass hysteria that got her all the publicity in 1997. She does however bash GWS patients and predictably plays the victim, Again.


https://www.jstor.org/stable/j.ctv18dvt2d.5?seq=6

'On March 25, 2002, I participated in a three-
day conference on bioterrorism and public policy in Brussels, the first
ever Advanced Research Workshop co-sponsored by NATO and Russia.
The workshop had been organized by Professor Simon Wessely (Kings
College School of Medicine, London) and Professor Valery Krasnov
(Director, Moscow Research Institute of Psychiatry)'



'Social and Psychological Consequences of Chemical, Biological and Radiological Terrorism
NATO-Russia Advanced Research Workshop'
https://projects.iq.harvard.edu/files/lernerlab/files/nato.pdf


Not sure this post belongs on this thread but I thought I'd post it while I remembered the bizarre event when Showalter addressed NATO.
 
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Lou B Lou said:
Indeed. Hysterics meets Nato. In 2002 Wessely did actually manage to create a NATO sponsored meeting where he'd invited Elaine Showalter to speak, to discuss 'the social and psychological implications of the new terrorism'.


Elaine Showalter in 'Hystories Revisited' (taking a break from Literary Criticism and bashing ME and GWS patients)
https://www.jstor.org/stable/j.ctv18dvt2d.5?seq=6

'On March 25, 2002, I participated in a three-
day conference on bioterrorism and public policy in Brussels, the first
ever Advanced Research Workshop co-sponsored by NATO and Russia.
The workshop had been organized by Professor Simon Wessely (Kings
College School of Medicine, London) and Professor Valery Krasnov
(Director, Moscow Research Institute of Psychiatry)'


'Social and Psychological Consequences of Chemical, Biological and Radiological Terrorism
NATO-Russia Advanced Research Workshop'
https://projects.iq.harvard.edu/files/lernerlab/files/nato.pdf


Not sure this post belongs on this thread but I thought I'd post it while I remembered the bizarre event when Showalter addressed NATO.
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:grinning:
 
Kitty said:
I can see why they wouldn't want people with military grade twaddle-spotting apparatus, though, who are also likely to ask highly inconvenient questions.
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I think this is unfair. You seem to be forgetting that an individual once heckled Prof Chalder at a seminar, which must have been absolutely terrifying. Maybe they simply can’t afford the security measures that would be necessary to protect these brave clinicians from dangerous militant patients who might ask awkward questions or even stoop so low as to employ sarcasm as part of their advanced asymmetric psychological operations.

I applaud BACME for its bravery in standing firm in upholding its anti-woke policy of excluding patients and rejecting independent analysis of scientific evidence in decision making. Clinicians Know Best.
 
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Lou B Lou said:
Indeed. Hysterics meets Nato. In 2002 Wessely did actually manage to create a NATO sponsored meeting where he'd invited Elaine Showalter to speak, to discuss 'the social and psychological implications of the new terrorism'.


Elaine Showalter in 'Hystories Revisited' (taking a break from Literary Criticism and bashing ME and GWS patients).
Edit correction. Showalter does not mention ME once in this reflection on her book Hystories, amazing, as it was framing ME as mass hysteria that got her all the publicity in 1997. She does however bash GWS patients and predictably plays the victim, Again.


https://www.jstor.org/stable/j.ctv18dvt2d.5?seq=6

'On March 25, 2002, I participated in a three-
day conference on bioterrorism and public policy in Brussels, the first
ever Advanced Research Workshop co-sponsored by NATO and Russia.
The workshop had been organized by Professor Simon Wessely (Kings
College School of Medicine, London) and Professor Valery Krasnov
(Director, Moscow Research Institute of Psychiatry)'



'Social and Psychological Consequences of Chemical, Biological and Radiological Terrorism
NATO-Russia Advanced Research Workshop'
https://projects.iq.harvard.edu/files/lernerlab/files/nato.pdf


Not sure this post belongs on this thread but I thought I'd post it while I remembered the bizarre event when Showalter addressed NATO.
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It will never cease to amaze me how Wessely managed to get up so high without ever having actually done anything for it. His roadmap is one of administrating various things, but as a psychiatrist he has contributed absolutely nothing worthwhile, in fact much of it is fraudulent at best, a disaster in many places.

He probably would have enjoyed being a vulture capitalist then a politician far more than this sorry excuse for a career. He probably would have done less harm this way.
 
Robert 1973 said:
Maybe they simply can’t afford the security measures that would be necessary to protect these brave clinicians from dangerous militant patients who might ask awkward questions or even stoop so low as to employ sarcasm as part of their advanced asymmetric psychological operations.
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And if they are not careful, we shall use sarcasm and poetic irony at the same time!
 
Gawd. It's some Pythonesque mash-up of French Taunter and Spanish Inquisition.

"Allo. Whoo is eet?"

"I am Sir Tiredalot and these are my Knights of the Unsound Vagal. We wish to ask your master about his research."

"Well I'll ask him but I don't think he'll be very keen. He didn't expect a kind of..."

"Nobody expects a canny statistician."

"Mind your own business!"

"Amongst our weaponry are such diverse elements as... maths, logic, whiteboards, sarcasm and a fanatical devotion to scientific methodology."

"Run Away!"
 
Dolphin said:
I haven’t watched
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The video is a talk Katie Johnstone gave to the Local ME network.
Edit: correction - the ME Local Network.

I started trying to watch this but the sound quality and my elderly hearing are such that I couldn't follow what she was saying, so I read the YouTube transcript. She picks up key point about problems with BACME's materials, particularly their claim that ME/CFS is caused by the vague term dysregulation. Also their approach to treatment being still the same as before, just with GET adapted to graded activity, with the usual find your baseline then gradually add activities, and their claim that you can overcome sensory sensitivities by gradual exposure to desensitise. And they call PEM a form of fatigue.

Here's her list of references:
BACME: https://bacme.info/
BACME’s resources: https://bacme.info/resources/
BACME’s 2020 position paper: https://bacme.info/wp-content/uploads...
ME Association response to BACME’s position paper: https://meassociation.org.uk/2020/10/...
Action for ME response to BACME’s position paper: https://www.actionforme.org.uk/news/%...
Physios for ME response to BACME’s position paper: https://www.physiosforme.com/post/bac...
An informative article by Dom Salisbury: https://virology.ws/2020/10/27/trial-...
An informative article by David Tuller: https://virology.ws/2020/10/27/trial-...
After I did this presentation I found a wonderfully informative article in the Canary with additional info on BACME: https://www.thecanary.co/uk/analysis/...
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