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

The rescheduled BACME 2020 conference will take place on Tuesday May 11 2021. https://www.bacme.info/civicrm/event/info?id=6

I was wondering if anyone had downloaded last year's program from the website (linked in the first post of this thread, but now taken down). I'd be interested to see what changes there have been (if any).

Can we change the title of this thread to reflect that the conference has been reschuduled. Thanks.
 

Attachments

Last edited:
It's good to see Chris Ponting will be talking to them about Genetics and ME/CFS, presumably introducing DecodeME.

But a lot of the topics concern me:

- Creative approaches in working with children and young people with CFS/ME Dr Halina Flannery, & Anna Gregorowski

- Workshops
A. Patient partners Rhonda Knight and Bev Knops
B. Occupational Balance Charlie Adler
C. Compassion Focussed Therapy Dr Jayne Woodcock
D. Dysregulation model- practical application, translating into practice, clinical approaches to rehabilitation Sue Pemberton & Dr Vikki McKeever

E. Wearable’s – Lucy Clark
F. Quality and Research Innovation in practice interviews - Deb Roberts
G A Behavioural therapy approach to Trauma-Informed Behaviour Therapy - Kirsty Northcott
H. Dietetics

14.15 CFS/ME services - Thriving in challenging times Christine Oliver & Deb Roberts

15.00 Sharing Innovation: Members presentations of research/ projects/audits/service developments/creative therapy approaches
Click to expand...


What's this dysregulation model? And what are 'creative' approaches to therapy? And what does trauma based CBT have to do with ME/CFS?
As for the one about ME/CFS services 'thriving'. That sounds to me like protecting their jobs.

Where is the recognition that there is no effective treatment for ME/CFS and they have to do a complete about turn and stop being 'creative' and start looking at patients' need for help with managing our lives?

And that means stopping all this talk of models and creative approaches, and instead provision of some good medical and support services, preferably with most of the current providers redeployed to do something useful.
 
I am reminded of when I was first a registrar in rheumatology at New Cross Hospital. We had a patient on the ward, a nice lady of about fifty, with a condition I forget - probably sciatica. What was more relevant was that she had had rheumatoid arthritis 20 years before and it had gone away as it sometimes does. She said something like 'of course I had wax baths and physio and all that drivel which made no difference but luckily it just went away'. It was the first time I had heard a patient express what was on my mind - all that drivel. And I could see that she could say it because she no longer had to do what she was told in the hope of getting rid of her arthritis. Other patients were going for their wax bath drivel twice a week.

This is what Dr Busse and Dr Guyatt of GRADE would have us support? There may be some debate as to whether or not to follow Mrs Floptop on the lightening process but not much seems to have changed when it comes to management of not-understood illness.
 
Trish said:
It's good to see Chris Ponting will be talking to them about Genetics and ME/CFS, presumably introducing DecodeME.

But a lot of the topics concern me:
Click to expand...

Yes strange he's been invited to a quackfest but then they must feel comfortable about the DecodeME study what with Action for ME being so heavily involved with it.
 
Trish said:
Oh how delightful.
They're finding more unevidenced ways to mess with our heads:

Compassion Focussed Therapy

Trauma-Informed Behaviour Therapy
Click to expand...

WHAT???!!!! You have to be joking......no, it is no joking matter. I think we need a thread which lists all the weasel worded ways (WWW) they invent to deliver a BSP bulls**t approach to justify their careers, approach and keep their money rolling in........
 
Last edited:
BACME lecture delivered


3.15 Workshop choices:
Wearable’s – Lucy Clark F. ?????????
Quality and Research Innovation in practice interviews - Deb Roberts G A
Behavioural therapy approach to Trauma-Informed Behaviour Therapy -Kirsty Northcott H. Dietetics TBC (see https://www.torbayandsouthdevon.nhs.uk/uploads/25531.pdf)

( See https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7750673/
Sick of the Sick Role: Narratives of What “Recovery” Means to People With CFS/ME
Anna Cheshire,1 Damien Ridge,1 Lucy V. Clark,2 and Peter D. White2)

__________________________________________________
Creative approaches in working with children and young people with CFS/ME Dr Halina Flannery, & Anna Gregorowski



Recent pedigree... 'Research Fellowship: Depression in Paediatric Chronic Fatigue ... T. & Flannery, H., 31 Jan 2021, In: Clinical Child Psychology and Psychiatry.'... EC and University of Bath........
 
Suffolkres said:
BACME lecture delivered


3.15 Workshop choices:
Wearable’s – Lucy Clark F. ?????????
Quality and Research Innovation in practice interviews - Deb Roberts G A
Behavioural therapy approach to Trauma-Informed Behaviour Therapy -Kirsty Northcott H. Dietetics TBC (see https://www.torbayandsouthdevon.nhs.uk/uploads/25531.pdf)

( See https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7750673/
Sick of the Sick Role: Narratives of What “Recovery” Means to People With CFS/ME
Anna Cheshire,1 Damien Ridge,1 Lucy V. Clark,2 and Peter D. White2)

__________________________________________________
Creative approaches in working with children and young people with CFS/ME Dr Halina Flannery, & Anna Gregorowski



Recent pedigree... 'Research Fellowship: Depression in Paediatric Chronic Fatigue ... T. & Flannery, H., 31 Jan 2021, In: Clinical Child Psychology and Psychiatry.'... EC and University of Bath........
Click to expand...

BACME infiltrated by alien forces......
AfME- shouldn't you decide to boycott this? Please answer?

Rather than by attending which may will be construed as endorsement?
 
Wearable’s – Lucy Clark F. ????????? Lucy V. Clark is a senior research associate in the Faculty of Medicine and Health Sciences at the University of East Anglia
Gosh, how privileged are we in East Anglia and Norwich...........?
AND she has a conflict being part of Vitality 360 LTD.....



( See https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7750673/
Sick of the Sick Role: Narratives of What “Recovery” Means to People With CFS/ME
Anna Cheshire,1 Damien Ridge,1 Lucy V. Clark,2 and Peter D. White2)

Acknowledgments
We would like to thank the patient representative from the GETSET management group who initially recommended doing this study; those who kindly provided feedback on the manuscript, and all the participants who gave up their time to take part in the study.
Go to:
Author Biographies
Anna Cheshire is a research fellow with a background in health psychology, based at the University of Westminster.
Damien Ridge is a professor of Health Studies and Research Director in the College of Liberal Arts & Sciences, University of Westminster, specialising in chronic health conditions and mental health, as well as being a practicing psychotherapist. He has held research posts at the University of Oxford and City University, London.

Lucy V. Clark is a senior research associate in the Faculty of Medicine and Health Sciences at the University of East Anglia and honorary research fellow at Queen Mary University of London.

Peter D. White is an emeritus professor of Psychological Medicine at Queen Mary University of London.
Go to:
Footnotes
Authors’ Note: The current affiliation for the author Lucy Clark is University of East Anglia, Norwich, United Kingdom.


Experience



    • Health Services Research
      Exercise Consultant

      VITALITY 360 LTD
      Feb 2017 - Present 4 years 2 months

      London, United Kingdon

      Vitality360 Ltd serves companies and individuals looking for results in the field of CFS/ME, chronic fatigue, fibromyalgia, chronic pain and rehabilitation.
      1) Return to Work: Working with insurance companies to support claimants back to work
      2) Fatigue & Pain: Supporting individuals with fatigue and pain conditions to get stronger, feel better and stay well
      3) Training and mentorship
      We use only specialists in the field and provide an evidence-based approach to the whole person.
 
Last edited:
adambeyoncelowe said:
They're part of Prudential. I had to take life insurance when I bought my house, and I (sadly) receive their magazine every now and then.

You get discounts on your health insurance if you get annual check-ups, record all your food and use a step counter to track activity (all of which they see to adjudicate how 'good' you are).
Click to expand...


Adam, thanks for drawing this to our attention As we await the release of the new guidance and your long and hard slog, .......this BACME Conference is a serious can of worms is it not? David T? Food for thought?
This is not NHS money well spent either...
 
Suffolkres said:
Adam, thanks for drawing this to our attention As we await the release of the new guidance and your long and hard slog, .......this BACME Conference is a serious can of worms is it not? David T? Food for thought?
This is not NHS money well spent either...
Click to expand...

There is more to Lucy V Clark.....according to her Linked in page


Groups
  • Vocational Rehabilitation Association
    1575142349441

    Vocational Rehabilitation Association
    -

  • Exercise is Medicine
    1576138858171

    Exercise is Medicine
    -

  • ukactive Together
    1574714125312

    ukactive Together
    -
 
I think it's good that Chris Ponting and Sonya Chowdhury are presenting. Clearly BACME still hasn't got the message. I will see if we can make progress on this through the CMRC Patient Advisory Group, as we have contact with Chris and Sonya.

I don't think boycotting is the right approach.
 
InitialConditions said:
I think it's good that Chris Ponting and Sonya Chowdhury are presenting. Clearly BACME still hasn't got the message. I will see if we can make progress on this through the CMRC Patient Advisory Group, as we have contact with Chris and Sonya.

I don't think boycotting is the right approach.
Click to expand...

Just to expand a bit; some of us in the CMRC PAG are keen to work with BACME to really drill home the message that they have to change. I think Nina Muirhead has been in conversation with them, possibly with regards to medical education.

Now is the right time to be having these conversations. We should influence as much as possible how the NHS services are reorganised in light of the new NICE guideline.
 
You must log in or register to reply here.
Back
Top Bottom