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"


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

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

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 ?

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