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

Dolphin

Senior Member
Messages
17,555
Likes
28,232
Alison Wearden of the Wessely/Sharpe/White/Chalder (or CBT) School of Thought has the following on her webpage

http://www.psych-sci.manchester.ac.uk/staff/AlisonWearden

Reader in Psychology

Chair Elect of British Psychological Society's Division of Health Psychology

Associate Editor of British Journal of Health Psychology

Assistant Chair of British Association for Chronic Fatigue Syndrome/ME (BACME)
Does anyone know anything about them?
 

joyscobby

Senior Member
Messages
156
Likes
13
I personally have never heard of them and nothing when googled. It would also be interesting to find out who is the chair if she is the assistant and where did this organisation appear from and who do they represent.
 

dipic

Senior Member
Messages
215
Likes
10
Interesting... when one does a search of "British Association for Chronic Fatigue Syndrome" (with quotes), it only gives you one result - the page you posted.

New organization? I have bad feeling about this...
 
Messages
100
Likes
1
Location
UK
Not the same thing, I don't believe.
Yeh, I realise that. Just the only British related BACME hit of any relevance that I found.

(However useful web search is though, it's always worth bearing in mind that nothing can be taken at face value on the intertoobs.
whois details on bacme.org lead to Egypt!)
 
K

Katie

Guest
So if we have the suspicion this is astroturfing or even just a psychological based ME/CFS association of psychologists and psychiatrist, how should we react? I'm concerned that these kinds of groups will be googled by the media and seen as authorities on the disease. It's going to be interesting to see a website if they get set up, I guess we'll know more then.

I'm suspicious...
 

Mark

Former CEO
Messages
5,238
Likes
6,194
Location
Sofa, UK
:eek:

I'm suspicious...
Good. :)

If that's only just popped up, it's a massive warning sign. Obviously they aren't going to just lie down and presumably have contingency plans for all this...

Re-iterates the urgency to get as much expert support as possible; suggest everybody think of relevant expertise in their friends and contacts, seasoned campaigners etc - and bear in mind all our conversations are currently public domain.
 

Mark

Former CEO
Messages
5,238
Likes
6,194
Location
Sofa, UK
Why don't we start up a society of our own?
We could call it the UK Association for Chronic Fatigue Syndrome.
We could even start several. The more societies there are with official sounding names, the less significant theirs will seem.
:D lol

Love it! Can't have too many support groups! We could nab every combo going! Association for British Chronic Fatigue Syndrome? Association for Chronic British Fatigue Syndrome? Both sound kind of appropriate given the peculiarities of our political landscape. :D
 

Frank

Senior Member
Messages
848
Likes
12
Location
Europe
The hope that Wessely gets Chronic Fatigue Syndrome (ME) group

The healed by CBT and GET Chronic Fatige Syndrome group, or maybe not, they will have a hard time finding members
 

Jenny

Senior Member
Messages
1,383
Likes
545
Location
Dorset
Bacme

I emailed Alison Wearden asking about this. (I'm a psychologist and know of her through various research interests.)

She told me that BACME is an organisation of clinicians and researchers working in the field of CFS/ME and it was formed in April of this year from the merging of two previous organisations - the Collaborative of CFS/ME Network
Coordinating Centres, and the CFS/ME Network. The latter was a network of
clinicians and researchers working in the field of CFS/ME.

Its original name was the CFS/ME Clinical and Research Network and Collaborative (CCNRC) but the name has now been changed to British Association for CFS/ME.

Apparently, membership of BACME is open to all UK-based healthcare professionals and researchers involved in the diagnosis and/or treatment of CFS/ME using evidence-based practice. Its constitution requires that members support evidence-based approaches. What are these, I wonder?

Jenny
 
Messages
1,386
Likes
1,831
Location
UK
Alison Wearden is a psychologist whose speciality, as far as I can ascertain appears to be hypochondria.


She is in charge of the UK taxpayer funded 1,147,000
FINE trial that looks like a complete waste of money. if only this money had gone to biomedical research.

http://www.meresearch.org.uk/information/publications/severe1.html

"... the FINE Trial is a described as a "randomised controlled trial of nurse-led, self-help treatment for patients in primary care Referred patients will be randomly allocated to one of three treatment groups: (a) nurse-led self-help, (b) supportive listening or (c) GP treatment as usual." Patients will be visited in their own homes, and before treatment commences qualitative interviews will be conducted to explore "patient views on illness causation, beliefs about chronic fatigue, expectations of intervention, and previous experience of treatment and doctor-patient relationships". At the same time, the patients GPs will be asked about their experiences of and attitudes towards patients with ME. After 20 weeks of treatment, patients will be assessed for a variety of outcomes, and again after one year.

What is the promising new treatment on offer to the severely-ill patients? Called nurse-led self-help or pragmatic rehabilitation, the approach "is designed to increase activity and challenge dysfunctional illness beliefs" (9), and includes elements of the cognitive behavioural and graded exercise therapy championed by those psychiatrists and psychologists who promote the biopsychosocial model of ME. The basis of this model is that "once an illness has started, its expression is affected by beliefs, coping styles, and behaviours, while consequential physiological and psychological effects act in some ways to maintain and/or modify the disease process" (1). Pragmatic rehabilitation, we are told, will help patients to understand their symptoms and, jointly with the nurse, agree a programme of rehabilitation. In support of its usefulness for the most severely ill patients, a single report in the scientific literature (9) describes two wheelchair-bound patients who had dramatic improvements in health following the pragmatic rehabilitation regimen now being rolled out to larger groups of patients as a full-scale MRC-funded trial. (Two other seemingly relevant reports in the scientific literature are, in fact, small pilot studies that refer to inpatient treatments within psychiatric wards, vis, Chalder et al, 1996 (4) and Essame et al, 1998 (5).)

This treatment is not new and hardly promising. But will some people benefit and report improvement of a sort? Well, probably given that the quality of life of us all (well or unwell) can be improved by changing some of our beliefs and coping behaviour, and increasing our activity levels. But as the authors of the new Canadian definition of CFS/ME make clear (12), the question is whether such treatments (generally recognised not to be a cure for patients physical illnesses or suitable for everyone with ME) add anything to what is available in the general medical setting, and hence whether the taxpayer-spend of 1,147,000 (including 411,000 in NHS costs, very useful for oiling the wheels of academic departments) is value for money. And furthermore, there are considerable doubts about whether the trial will address the central problem of ME.

For instance, will each severely-ill person on the FINE trial be given a comprehensive medical assessment to identify somatic (physical) symptoms and signs? Autonomic disturbances, seizures, frank muscle weakness, neuroendocrine disturbances (like sweating episodes), recurrent flu-like symptoms will they be recorded over the 70 weeks? Symptoms like musculoskeletal pain, neurocognitive problems and sleep dysfunction will they be comprehensively assessed? Will patients receive treatment for any of these? Given the expanding core of evidence for a biological pathology for this illness, it is widely felt by patients, support groups and their political representatives that scarce research funding would be better targeted at appropriate biomedical investigation and treatment of the physical basis of ME."
 

Mark

Former CEO
Messages
5,238
Likes
6,194
Location
Sofa, UK
Bacme?

or SACME?

How come they get a brand new organisation and a web site and a million quid and everything?
 
Messages
100
Likes
1
Location
UK
Federation of UK ME - has quite a ring to it........

Surely the creation of more and more organizations is a bad thing?
It just waters down the effort if they are valid, or muddies the waters if they're psych based, and makes it ever more difficult to pin down who's who and what they're doing.
 

fresh_eyes

happy to be here
Messages
900
Likes
9
Location
mountains of north carolina
So if we have the suspicion this is astroturfing or even just a psychological based ME/CFS association of psychologists and psychiatrist, how should we react?
Katie, I really like the way you're thinking. Seems like we need some infrastructure in place whereby we can put out, for example, a press release objecting to this astroturfing. If we keep waiting for our official organizations to take this on...well, we might be waiting for a long time.

And our organization can also give out awards, like you said on the other thread!

(By the way, I'm in the US - but perhaps we can be an International Association? That sounds REALLY official! Though I've got to say I *love* the Federation of UK ME name...:D)
 

Dolphin

Senior Member
Messages
17,555
Likes
28,232
Surely the creation of more and more organizations is a bad thing?
It just waters down the effort if they are valid, or muddies the waters if they're psych based, and makes it ever more difficult to pin down who's who and what they're doing.
That is certainly one issue that could be discussed with regard to patient organisation.

But I think with BACME, one has to remember that this isn't a patient organisation. Although it's title might give the impression (perhaps deliberately?).

This one is clearly psych-based e.g. have to agree to NICE guidelines to be eligible to join.
 
Messages
59
Likes
1
Location
Bognor UK
http://www.meassociation.org.uk/ind...ning-forum-for-mecfs&catid=30:news&Itemid=161

Thursday, 25 March 2010 08:07

The role of the new British Association for CFS/ME (BACME) in the education and training about the illness of the next generation of doctors and healthcare professionals should be examined by the All Party Parliamentary Group on ME (APPG) when the group reforms after the General Election.

That's the view of six local ME support groups who have banded together at the West Midlands ME Groups Consortium.

They think that BACME which has apparently taken over as the training forum for NHS staff involved in the care of people with ME/CFS needs to be more publicly accountable, would benefit from wider patient participation and may be too much under influence of the psychiatric lobby.

BACME, chaired by consultant paediatrician Dr Esther Crawley, appears to have assumed the functions of what used to be called the CFS/ME Clinical and Research Network and Collaborative (CCRNC) but there is little information available in the public domain about this change.

In a carefully worded letter to members of the existing APPG, the West Midlands ME Groups Consortium wrote:

"The APPG are aware of our ongoing concerns with regard to the need for appropriate education and training of those healthcare professionals involved in any ME/CFS services and the particular role of BACME in disseminating training. There remain issues with regard to balance, representation and democratic accountability.

"We note that recommendation 6 of the APPG Inquiry on NHS service provision for people with ME/CFS Interim Report states:

From correspondence with the Royal College of Physicians and the Royal College of General Practitioners, the Group is not convinced that medical students receive sufficient training on ME/CFS, including how to clinically assess and diagnose these patients and advise on appropriate forms of management. The Group recognises that ME/CFS does not have the same obvious impact as cardiovascular disease or cancer, but that it is necessary for medical students to receive adequate training in ME/CFS. The relevant Royal Colleges should ensure that students receive training in this disease.

"Since the last APPG on ME meeting, the CCRNC Inaugural Research Workshop was held at St Barts Hospital, London on 7 December. Speakers here included - Professor Peter White, Professor Simon Wessely, Professor Trudie Chalder and two representatives from BACME.

"With the above in mind, the WMMEG requests that a representative from CCRNC/BACME, is invited to a future APPG on ME meeting in the not too distant future. This would give the APPG on ME an opportunity to hear about the CCRNC/BACME, and people affected by ME an opportunity to voice their questions on the crucial issue of education and training."

Correspondence on the issue was raised briefly under Any Other Business at the parliamentary's group meeting on 10 March. But there was no proper discussion, and no action recorded, as the meeting had run out of time.

The West Midlands Consortium comprises local ME groups from Herefordshire, Solihull and South Birmingham, Shropshire, Walsall, Warwickshire and Worcestershire.

They're anxious that the issue should not be forgotten, and should be raised as a matter of priority with the incoming APPG after the General Election.