The 11 to 17 May 2024 is myalgic encephalomyelitis (ME) Awareness Week. This year, two major conferences are taking place throughout the week. One is the inaugural ‘Unite To Fight’ conference – a first of its kind community-driven, free long Covid and ME event. The other is the British Association of Clinicians in ME/CFS’s (BACME) annual gathering. And unlike ‘Unite To Fight’, BACME’s conference affairs are taking place behind closed doors. Given this, alongside a raft of other concerns, members of the ME community, coordinated by campaign group the Chronic Collaboration, have written to the group’s chair.
Notably, the letter sets out a damning litany of BACME’s historic and current harms towards people living with the devastating disease.
Behind the scenes of BACME
Since 2021, BACME has been registered as a charity for medical professionals moving in ME research, treatment, and care. However, the organisation – of 200 paying members – has a longer and considerably controversial history. As the Canary has previously explained:
BACME boasts that its charitable objective is the “relief of sickness for the public benefit”.
However, its laudable-sounding aims obfuscate a contentious history in upholding a harmful status quo. For one, the organisation was the machination of notorious members of a lobby of medical professionals hell-bent on psychologising the chronic systemic disease. Members of the ME community sometimes refer to them as the “biopsychosocial” or “psych” lobby.
Specifically, at its outset, professor Esther Crawley chaired the group. Crawley has a prolific record of endorsing treatments geared towards a psychosomatic basis for the disease.
On top of this, the Chronic Collaboration dug into some of the speakers participating at this year’s conference. Alarmingly, BACME is platforming a prominent proponent of the flawed DWP part-funded PACE trial – Jessica Bavinton. You can read more on the PACE trial here, but essentially the study promulgated junk science to promote treatments actively harmful to ME patients.
So of course, Bavinton is taking what is ostensibly a repackaged form of one of these damaging treatments – graded exercise therapy (GET) – to the conference.
BACME “actively harming patients right now”
As a result, members of the ME community, facilitated by campaign group the Chronic Collaboration have laid out a number of these issues in an open letter. It starts by stating:
As individuals living with, or affected by, myalgic encephalomyelitis (ME, also referred to as chronic fatigue syndrome, CFS), we are growing increasingly concerned by the direction of travel of BACME, and the media reports around what we consider to be harmful and damaging approaches to caring for with people with ME.
We are aware BACME has what many consider to be a controversial history. We are also aware that BACME has taken what it considers steps to rectify its previous conduct. However, as patients we feel none of that has been sufficient and that BACME is still actively harming patients right now.
Following this, it articulated a number of the issues that the Canary, the Chronic Collaboration, and many members of the ME community have been highlighting. Perhaps most significantly, the letter expressed the Canary’s findings that healthcare teams are using BACME guidance documents to inform their treatment of patients with ME.
In particular, the letter references the appalling abuse, gaslighting, and neglect that hospital staff have been putting severe ME patients through. The Canary has comprehensively documented the situation for three such women with severe ME – Millie, Carla, and Karen – that NHS hospitals are failing right now.
As a result, the letter set out a number of key demands. These included:
1. Make a public statement acknowledging that graded exercise therapy (GET) and cognitive behavioural therapy (CBT) harmed patients, that PACE trail was flawed, and you support the NICE guidelines. So far to patient’s knowledge, you only issued a statement in October 2020 withdrawing support for the deconditioning model of ME.
The ME community raises its collective voice
Letter signees emphasised many of these concerns. One highlighted how BACME’s documents have directly harmed Millie, Carla, and their families:
Patients are being mistreated, sectioned and deprivation of liberty in hospital right now. If your information does not align with the current NICE Guidelines, you are causing confusion. A hospital quoted using your info, instead of NICE. Patients will end up harmed by the wrong support, please rectify your materials and website.
One member of the ME community wasn’t pulling any punches:
People who are perpetuating harm to those with ME/CFS should be struck off and locked up, there is absolutely ZERO excuse for doing what you are doing. In no other disease do people have to use legal advice from a Barrister to safeguard themselves with a Limitation of Consent before they dare see a doctor because of the horrifyingly harmful effects of seeing someone ignorant of the current ME science.
We are singled out for a level of physical and psychological abuse like no other group of patients through the denial of the biological reality of ME which you are promoting. You should be ashamed, and know that generations of abused patients may have passed before us and may still pass before the low lives doing us harm are stopped, but one day we as a patient group will see justice on this.
Of course, it shouldn’t take a group of severely unwell patients to draw attention to all this. However, BACME’s persistent decision to give prominence to pillars of the “psych” lobby continues to undermine people living with ME at every turn. Given years of valid distrust, you’d think BACME would open its conference to the patient community. After all, what does it have to hide?
Responding to the ME community letter would be a start. However, both the letter and comments make clear that BACME has a lot to do to prove it’s on the side of patients living with this devastating chronic illness. Evidently to date, people with ME have little reason to believe this is the case.
Support the ME community and sign the open letter to BACME here.
Feature image via the Chronic Collaboration/Organise
