BACME ?? who...????

Stonebird : the lived exerience of Severe ME

BACME ?? Who ??
Greg Crowhurst

(permission to repost)



BACME : the " British Association for CFS/ME" ...who ??

On a nightmare day of horrible physical suffering, on a day of somehow getting through and maintaining some shred of sanity, we come across late last night, wi this posting from the West Midlands ME Groups Consortium on BACME, the unaccountable organisation that has all of a sudden seems to have set itself up as the sole training provider for ALL NHS staff in "CFS/ME"

"http://www.meassociation.org.uk/images/stories/wmmeg_statement_june_2010.pdf

My wife's reaction was immediate and fierce .

So this morning I try and find out about BACME.

Not easy for there's no apparent website.

In charge , apparently is Esther Crawley who is " a leading supporter of CBT/GET and is dismissive of the regular and consistent patient reports which identify adverse effects; she is now Medical Adviser to AYME (Association of Young People with ME), which has adopted the psycho-social model and actively promotes CBT/GET. "
(Margaret Williams http://www.meactionuk.org.uk/A_NICE_DILEMMA.htm)

Her Deputy , as far as I am aware, is Alison Weardon of the FINE trial.

Here's the thing : I am a Registered Nurse with several peer reviewed Nursing articles to my credit, I am also a fully qualified Trainer - having run my own training company throughout the NHS for over 8 years. My knowledge of Severe ME, is gained through 17 years of caring experience, publications and advocacy, however BACME would not accept me as a trainer, ,even if I could work, which I can't, for it seems that they will only accept as "patient representatives" those who subscribe to NICE Clinical Guideline "53" : something I could never do .

NICE Clinical Guideline "53" : that's the the one which relied upon an evidence-base of just one systematic review that comprised only 18 clinical trials, not all of which were random controlled trials (RCTs), of which just five were RCTs of CBT and a further five were RCTs of graded exercise therapy, making a grand total of just 10 RCTs, all on a patient base of just 1,448 patients who may or may not have had ME/CFS; that's the one which rejects the WHO formal classification of ME/CFS as a neurological disorder; that's the one which ignores the international evidence that ME/CFS is a biomedical, not psychiatric, disorder; tha's the one which proscribes appropriate testing for ME patients ; that's the one which is condemned by virtually all patient groups as "unfit for purpose.

(cf Margaret Williams http://www.meactionuk.org.uk/A_NICE_DILEMMA.htm)


As a struggling husband I am concerned that , according to the West Midlands ME Groups Consortium , "the severely affected with ME appear to have no representation whatsoever" on BACME. Thank God is our reaction; as long as they are not doing any training for severe ME !

For you would not want the severely affected to be involved in any way in advocating CBT and GET -mot that you'd find anyone with genuine ME who would, beause they are dangerous and do harm !

The FINE trials themselves show no advantage or efficacy whatsoever to the use of CBT and GET for the severely ill. So how can BACME justify training people in it ?

"How dare they ? How dare BACME presume to speak up for people with ME " ? my wife asked last night, furious at the apparently unstoppable , ongoing indoctrination of clinicans in methods that case harm to genuine ME patients .

After all these years of struggling to care for my wife who has very severe ME , I am so very tired of the endless fudging or pretending to meet the needs of people with ME, by organisations like BACME, who actually work to a psychiatric paradigm , based upon pseudo-science and flawed patient selection criteria.

Who has given BACME the authority and the right to claim to be the sole ME training provider for the NHS ? What's happened suddenly to the free market and competition? What's happened to the biomedical truth of ME ?

If you only have one provider, saying they are the sole provider and they are excluding the biomedical model, this is dangerous for people with ME, who have realy physical dysfunction and who will be made ill by the promotion of these regimes as treatment, when they simply aren't.

We are shocked and horrifed . Surely this needs challenging ?

Comments

  1. Hi Linda & Greg.
    I am a member of WMMEG and, believe me, there is no way we would wish BACME in it's current form to be training health professionals to care for pw severe ME!!!
    Our sole purpose in pursuing the concerns we have about BACME is to expose this organisation and to bring about change to the existing set up.
    We have highlighted on numerous occasions the lack of accountabilty, the lack of transparency the exclusive patient representation and the very poor and biased training & education they provide, as described in the brief on the MEA website.
    During the course of our lengthy investigations we become more and more convinced that BACME is responsible for the dissemination of information that shapes the NHS clinics we have today. That this is unacceptable goes without saying - although we have said it over and over again!

    Trouble is no one appears to be listening...

    We have tried to find out who belongs to this organisation and who the patient reps are - paricularly the "National Charity" reps. AfME deny being on the BACME Executive, by the way, but it is clear that they & AYME sponsor the totally unsuitable education & training 'conferences' that BACME run every 18 months. Please let us know if you find out any more on this.
    It is abundantly clear to us that nothing in the ME world will change until this organisation changes.It appears to be the natural successor to the original CCNC NHS service development group for CFS/ME which evolved into the CCRNC and then merged with the NHS CFS/ME health professionals group to become BACME. Along the way it became autonomous, secretive and lacking in any patient representation which adheres to the governement guidelines on patient representation - clearly they do not represent us or a great many other pwME.
    And please note that although they purport in their Constitution to only promote 'evidence based' treatments etc, they appear to have no qualms in setting up a project led by Dr Crawley (Chair of BACME) which involves using the Lightning Process (definitely NOT an 'evidence based' treatment last time I looked?) on children which seems to be a precursor to rolling it out as a national project using the NHS CFS/ME clinics.

    I hope that everyone will bombard their MPs with the "Brief for Parliamentarians" available on the MEA website:

    http://www.meassociation.org.uk/images/stories/wmmeg_statement_june_2010.pdf

    and make sure they tell their MPs why they disagree with the BACME set up.

    I am sorry that you are sill suffering so badly, Linda. I know what it is like as I was very severely affected and bedridden for 4 years during my ME and every day was a struggle through hell. I just hope and pray that you will improve one day as I did.

    Jenny Griffin
    WMMEG

    ReplyDelete
  2. Dear Jenny

    Can I just say how impressed I am with WWMEG !!

    Good for you !

    It's such a relief to know there's at least one effective , fighting organisation; they are not easy to find in the ME world ; if only
    there were more .

    I would have had no idea about BACME if it hadn't been for you.


    Linda's reaction was so furious I just had to post something.

    You 're doing a brlliant job - it's great you're investigating BACME


    I can't express our outrage .

    Jenny if only more people would speak out as you are so bravely doing.

    Thanks for posting us such a detailed response.


    Greg

    ReplyDelete
  3. Esther Crawley is also responsible for a current study testing Lightening Process on children.

    ReplyDelete
  4. I's not only me, Greg - Duncan Cox, Jill Pigott,Peter Ruberry, Pauline Ovenden and Sue from the Walsall group are all involved and we work together. Others have helped us along the way as well.

    I am glad we have enlightened you! It is our purpose to make sure that everyone knows about BACMEand their aims. We are grateful to the MEA for giving us a platform to reach out more widely and to hopefully explain in straightforward language just exactly what is happening.

    WMMEG was formed in the first place as a response to the new services in the West Midlands - we all came under the B'ham CNCC. The local group patient reps got together when we realised the services weren't entirely going our way!

    We have stuck together (even after our CNCC ceased to be in about 2007/8) and we called ourselves WMMEG in order to register as a Stakeholder for NICE. We gave a lengthy and detailed response to the draft Guidelines which can still be seen I think - we were quoted several times in their responses.

    After we were alerted to the first BACME(CCRNC) Conference in 2007 which was held in B'ham (and to which we, as local patient reps, were not invited - surprise!)we became inceasingly concerned about what was happening here and who was responsible. We know for a fact that Bill Reeves was the guest speaker at this conference and shortly after this patients at our CNCC (much to the distress of some) were asked about child abuse in their imitial consultation. We made the connection and the rest is history, as they say... We have been pursuing this ever since as we feel it is core to the attitudes and treatments we receive in the NHS.

    I have to say we never set out to do it all ourselves, we really hoped that someone else would take this on, but there you go. We are just ordinary local group leaders/ newsletter editors etc and could well do without the extra work but we are all determined not to give up now until we get some answers.

    I am honoured to work with such a fantastic group of pwme -all lovely and caring people and all very dedicated to justice for people with ME(G93.3).

    Jenny
    PS I didn't mean to be "Anonymous" but couldn't get my comment up without pressing this option - not exactly the most computer literate person in the world sadly!

    ReplyDelete
  5. Dear Elle and Jenny,

    Thanks Elle -yes I find the Lightning Process study extremely disturbing it is beyond belief how anyone could take the Lightning Process seriously as an option for genuine ME sufferers - never mind grant it any kind of legitimacy by investing in formal research.

    Jenny - what you have in the WMMEG is so precious. So many "ME" groups are riven by the most extraordinary personal attacks , the worse thing of all : egos. An incredible capacity for self-sabotage, a shocking willingness to compromise, and a lack of vision, never mind courage.

    All I can say is that it sounds like WMMEG is driven by people with genuine ME , who know what is important, because they are`living with it : and just haven't got the time or the energy for any nonsense.

    You're doing that most incredible thing - actually managing to reach out and inspire others to fight !! You know if there was Stonebird Award for showing what is possible,then it would be awarded to you.

    (I'd gladly publish anything by WMMEG on my main website : www.stonebird.co.uk)

    Greg

    ReplyDelete
  6. I believe BACME had a conference in October 2010 in Milton Keynes.

    Is this organisation still up and running as there is still no website for them?

    Many thanks

    ReplyDelete

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