British Association for Chronic Fatigue Syndrome/ME (BACME) - anyone know anything?

[creekfeet]

bananaman, that's excellent. It's exciting to see local and regional associations insist that something possible big not be allowed to just slip by.

 

[justinreilly]

this on one click http://www.theoneclickgroup.co.uk/d...Experience Courtesy of Dr. Alison Wearden.txt

This is an excellent critique of the study by a participant.

This FINE approach looks like it's just the usual harmful UK psych approach with the added emphasis on not allowing patients to consult with physicians, only nurses and CBT/GET 'therapists'. scary.

 

[justinreilly]

BAPOAEMECASKBACME.com is still available!

British Association for Chronic Fatigue Syndrome/ME (BACME)

Our new org to fight BACME could be:

the British Association of Patients and other Actual Experts on ME/CFIDS against the sham known as the British Association for Chronic Fatigue Syndrome/ME

Kinda snappy, huh?

luckily, BAPOAEMECASKBACME.com is still available.

 

[Dolphin]

Our new org to fight BACME could be:

the British Association of Patients and other Actual Experts on ME/CFIDS against the sham known as the British Association for Chronic Fatigue Syndrome/ME

Kinda snappy, huh?

luckily, BAPOAEMECASKBACME.com is still available.

:Retro smile:
One could set up a blog for free.

 

[ukxmrv]

I think that the head of BACME (spit) is Dr Esther Crawley?

Just to get a flavour of her ideas on XMRV (for example) there is a discussion in the WPI facebook page of a recent talk by her.

It's under WPI on facebook, Discussions, What we are up against.

http://www.facebook.com/topic.php?uid=154801179671&topic=12698

 

[Daisymay]

Thanks XMRV, well I suppose I shoudn't be surprised to read what Crawley said in that Dorset group talk but I kind of am, it is all so utterly blatantly awful and so shocking that an ME group would let it happen!

 

[Jenny]

QUESTIONS RAISED OVER THE TRAINING ROLE OF A NEW BODY FOR ME/CFS PROFESSIONALS

The following statement was issued by the West Midlands ME Groups Consortium (WMMEG), which is to be sent to the All Party Parliamentary Group for ME:

WMMEG call upon the British Association for CFS/ME (BACME) to re-write their constitution and to urgently address the issue of balance, content and appropriateness of their education and training programmes for UK healthcare professionals.


WMMEG (West Midlands ME Groups Consortium)

Apparently there is more on this on the ME Association's website.

Jenny

 

[helsbells]

They really just won't go away will they!! Like the terminator only the bad ones! Thanks re the elucidation re the term astroturfing though - sorry too far back now to thank the actual elucidator but I can now overuse the term with venom

 

[Dolphin]

Their conference is this week. If anyone hears anything, we'd all be interested (I imagine).

 

[Enid]

If that lot - BACME - is British then I am not. Big name substance lacking. On the other hand the growing support for the WMMEG by increasing numbers of countrywide local support groups spells out the difference.

 

[worldbackwards]

BACME and Sussex and Kent ME/CFS Society: a marriage made in heaven

https://twitter.com/i/web/status/801188470664216576

 

[Wildcat]

.
Esther Crawley and Dr Alistair Miller are current Medical Advisors to the Sussex and Kent MCFS Society One big happy family.:


http://measussex.org.uk/about-us/medical-advisors/


Professor Esther Crawley
Dr Esther Crawley, is a Reader in Child Health at the University of Bristol and a Consultant Paediatrician with a special interest in CFS/ME. She is the clinical lead for Bath specialist CFS/ME service for children based at the Royal National Hospital for Rheumatic Diseases in Bath which currently provides assessment and treatment for over 200 children and young people per annum.
Dr Crawley completed her medical training in Oxford, and then worked in Birmingham and Liverpool before doing her PhD at University College London and Great Ormond Street Hospital. Esther then moved to Bristol and Bath and set up the paediatric CFS/ME service.

Dr Crawley is a medical advisor to the Association of young people with ME, was Chair of the British Association for CFS/ME (BACME, 2007-2010). She set up the Royal College of Paediatrics and Child Health special interest group for CFS/ME, was on the guideline development group for the NICE guidelines published in August 2007 and the MRC CFS/ME expert working group (2009-2010).


Dr Alastair Miller
Alastair Miller was a Consultant Physician in the Tropical & Infectious Disease Unit at the Royal Liverpool University Hospital and an Honorary Fellow at the Liverpool School of Tropical Medicine 2005 until May 2014. He remains an Honorary Senior Lecturer at The Institute of Infection and Global Health at Liverpool University. Prior to Liverpool he was a Consultant in the West Midlands and Honorary Senior Lecturer in Infectious Disease at Birmingham University. His main clinical interests are blood borne viruses, bone and joint infection and chronic fatigue syndrome/ME.
He has been involved clinically with ME/CFS since his time as a registrar in the mid 1980s. In the Navy he was the lead clinician and in Worcestershire he established a multidisciplinary team for CFS management. Since arriving in Merseyside he became the clinical lead for CFS and ran a diagnostic clinic and a therapy service in collaboration with therapy and psychology colleagues. He is Chair of the British Association for Chronic Fatigue Syndrome and ME (BACME) and Principal Medical Advisor for Action for ME (AfME).


~~~~~~~~~~~~~~~~


NOTE - Dr Alistair Miller is former Medical Advisor to AFME and former Chair Of BACME.
.

 

[Esther12]

As well as being involved with PACE, Gabrielle Murphy was a co-author of this 2015 paper: http://forums.phoenixrising.me/index.php?threads/cbt-and-get-are-effective.37030/

Currently available on google: https://webcache.googleusercontent....w/S135246581500017X+&cd=1&hl=en&ct=clnk&gl=uk

 

[Henry A]

BACME also produced a guide for "healthcare professionals" in August last year overseen by the then chairman Alastair Miller. It was pretty much what you would expect, CBT etc. As I remember it was made available as a PDF and promoted, perhaps inevitably, byAction for ME before they redid their website a couple of months later.

http://www.meassociation.org.uk/201...and-management-guide-for-cfsme-4-august-2015/

Sorry if this duplicates what anyone else has said or I've posted in the wrong place. I'm trying to get the hang of things (usually I'm on Twitter!)

 

[worldbackwards]

BACME also produced a guide for "healthcare professionals" in August last year overseen by the then chairman Alastair Miller. It was pretty much what you would expect, CBT etc. As I remember it was made available as a PDF and promoted, perhaps inevitably, byAction for ME before they redid their website a couple of months later.

http://www.meassociation.org.uk/201...and-management-guide-for-cfsme-4-august-2015/

Sorry if this duplicates what anyone else has said or I've posted in the wrong place. I'm trying to get the hang of things (usually I'm on Twitter!)

There is a thread knocking about for it somewhere or other. I seem to remember that, all that aside, it could have been worse.

Welcome Henry A. I'm usually here!

 

[slysaint]

http://www.meassociation.org.uk/wp-content/uploads/BACME-guide-with-pharmacology-30-06-2015-copy.pdf
Their website appears to be 'under maintenance'; wonder why?

"The new BACME website will be ready in November 2016. Thank you for your patience."