By David Tuller, DrPH
The British Association of Clinicians in ME/CFS, known as BACME, defines itself as “a multidisciplinary organisation providing information, resources, education and networking opportunities to UK professionals to deliver high quality care” to people with the illness. Its members include psychotherapists, physiotherapists, occupational therapists, physicians, and others involved in delivering services to patients.
Formerly known as the British Association of Clinicians in CFS/ME, the group was long-known as a stronghold of the graded exercise therapy/cognitive behavior therapy (GET/CBT) approach to treatment. However, in 2021, a new set of ME/CFS guidelines from the National Institute for Health and Care Excellence rescinded prior recommendations for these two treatments and assessed the quality of the evidence to support them as either “very low” or merely “low.”
BACME has since made some not-very-impressive efforts to adjust its orientation and align itself more closely with the new NICE guidelines. Last year, it published a revision of its “ME/CFS Guide to Therapy.” Earlier this week, Jonathan Edwards, a professor emeritus of medicine at University College London, and two colleagues sent an open letter to BACME, offering a sharp critique of its therapy guide. (The two co-signers were physiotherapist Michelle Bull and psychologist Joan Crawford.)
I spoke about the issue this morning with Professor Edwards. (I referred in the video to the British Association of Clinicians for ME rather than the British Association of Clinicians in ME/CFS.)
Thanks for this and in particular for raising the issue of ‘central sensitization’. [I went looking for central sensitization in the Therapy Guide but it wasn’t there, but there was a reference to dysregulation of the central nervous system in the guide – fig. 1- with a note that the dysregulation model is explained in another document, (available here -https://bacme.info/library/about_me/).]
I’m concerned with how ‘central sensitization’ appears to be being used by doctors as a reason or excuse not to dig deeper into the causes of pain and not to consider that the pain could indeed be peripheral. It seems to me that some or many UK doctors, including experienced pain specialists/consultants, may have adopted a false belief that any unexplained pain must be due to central sensitization and that patients with unexplained pain can only be helped by pain management techniques/therapies such as psychotherapy and physiotherapy which will help them cope with their incurable pain. They contend that such patients may need time to come around to their way of thinking and management model and to stop looking for cures to their pain. Ok, so some patients may indeed have central sensitization but what of the ones who don’t, who aren’t being adequately investigated and treated for their peripheral/local pain because of these false pain beliefs, who are instead being condemned to a life of severe pain when they could be treated? They got it badly wrong in one case that I know of – where treatment abroad proved beyond doubt that their assumptions were wrong. Who knows how many other people are being similarly condemned on the basis of little or no medical evidence? (And meanwhile the UK Government struggles to understand why the country’s economic inactivity rates are so high!)
By the way, in relation to that case I mentioned above that was wrongly assumed to be related to central sensitization, as I understand it the doctors involved haven’t accepted or acknowledged their error of judgment and there’s been no apology for it from them or from the hospital trust on their behalf. I have reason to believe, because they communicated as much, that a good number of their patients are in a similar position with pain that they don’t believe would respond to medical or surgical treatments, so how many of those patients could be helped, I wonder, if their doctors weren’t so blinkered/indoctrinated?
Message for CT – I am part of the team that is trying to save Savannah from starvation by the NHS. Do you happen to have the details of the hospital abroad that was able to provide appropriate pain treatment? She’s desperate to get out of NHS hands and will even consider travelling abroad despite being very severe.
Michiel- I’m sorry not to be able to help. The case (and treatment) I was talking about weren’t related to ME at all but a different very local severe pain condition that doctors wrongly assumed was due to central sensitization. I apologize for not making that clear and for perhaps raising your hopes.
Michiel – I see from the online petition – I assume I have the correct case (?) – that a Liverpool Hospital has been advised. Could that be the Walton Centre perhaps? If so, then I have some information regarding that centre that might be of some limited interest/use, although not really very positive I’m afraid. Perhaps David could link us up, if you know each other?
I’m thinking great minds think alike but fools seldom differ
Group think
All these stories of ME sufferers are so familiar to me they overwhelm me with sadness . So much now ( and for years) medical knowledge is out there but many medical
profesionals seem not to heed it.Or perhaps not find time to read it. There were 4 in our family with ME, now two only, myself and my nephew.
I cannot begin to tell you the number of people we have met in hospitals etc who have been hurtful in their dismissal of our symptoms. And even accorded blame to us. Thank heaven’s for the well informed medics who are so kind and helpful and encouraging . I thank them from the bottom of my heart.