The British Association of Clinicians in ME/CFS (BACME) doesn't understand post-exertional malaise.
They think it's a type of fatigue.
I don’t entirely understand BACME. Who they are, where they come from. Their website says they are a “multidisciplinary organisation providing information, resources, education and networking opportunities to UK professionals to deliver high quality care to people living with ME/CFS” which all sounds very nice, but where did they come from? Who created them, and who put them in a position of power? According to their website they are a charity and get money from the National Lottery Community Fund. This doesn’t seem right for an organisation which the patient community views with profound distrust, and which arguably has harmed a lot more people than it has helped.
I may not know much about BACME, but I have it on good authority that they control the NHS specialist ME/CFS clinics. In the bad old days these clinics provided cognitive behavioural therapy (CBT) and graded exercise therapy (GET). Many people were seriously and permanently harmed by GET. BACME has never apologised for these harms, or even acknowledged them. Since the NICE guidelines were updated in 2021 these clinics don’t push GET anymore. However, having read some of their recent literature I’m confident in saying that the people at BACME still don’t know what ME/CFS is. They think ME/CFS is fatigue. They don’t know what post-exertional malaise (PEM) is. They think PEM is a form of fatigue. They don’t recognise how serious and devastating ME/CFS is, and they still cling to the old, patient-blaming view that people with ME/CFS could get better, if they only tried hard enough.
Am I being too harsh? Let’s peruse some of BACME’s literature, and you can judge for yourselves.
From BACME’s 2021 5-page leaflet ‘Post-exertional malaise’:
One of the hallmark symptoms of ME/CFS (Chronic Fatigue Syndrome) is a pattern of fatigue called Post-Exertional Malaise (PEM), sometimes referred to as Post Exertional Symptom Exacerbation (PESE).
And a little further down in the same leaflet:
It is important to identify Post-Exertional Malaise as it requires different management strategies to other types of fatigue…
They think PEM is fatigue.
PEM is a complex and dangerous internal injury which might take days, weeks or months to resolve - or it might never resolve at all. By calling PEM ‘fatigue’ BACME minimises this dangerous symptom and fails to give patients the proper warning to avoid PEM if at all possible. The BACME people really don’t seem to have kept up with any of the research into PEM that has come out in the past 10, 15 or 20 years or so. If any BACME folks are reading this, a great place to start would be the Bateman Horne Center’s educational video series on PEM, aimed at clinicians.
Why do I think BACME blames patients for not getting better? Let’s take a look at another leaflet, ‘An Introduction to Dysregulation in ME/CFS’. At first glance this pamphlet seems to consist of a lot of sciencey-sounding waffle. There is a lot of talk of ‘dysregulation’, a medical term which simply means the body isn’t working properly in some way. Fair enough. But we get to the crux of things towards the end of the leaflet on pages 15 and 16: BACME thinks that whatever is going wrong with the bodies of people with ME/CFS can be treated with:
sleep hygience
reducing stress (at least, I’m think ‘reduce stress’ is probably what BACME means by “Desensitisation of the sympathetic nervous system and increasing the parasympathetic response”
managing orthostatic intolerance with fluids etc.
resting and pacing
avoiding immune system triggers
eating frequent small portions of healthy food
Now, all of these are helpful for managing ME/CFS. But BACME wrongly believes that these management tools actually treat the underlying pathology. They believe that patients can treat their ME/CFS with rest and sleep hygiene. Fundamentally this comes back to the old idea that patients could get better if they only tried hard enough, if they only did all the right things, if they only reduced stress and meditated and thought positive thoughts. It’s the same patient-blaming nonsense that BACME has been pushing all along.
It’s true that BACME are better now than they were pre-2021 - but that’s an incredibly low bar. The people who are supposedly the UK’s experts on ME/CFS still fundamentally misunderstand the condition. This makes them a danger to their patients. It’s unacceptable, and we deserve better.
Update: after writing this I found an article by Dom Salisbury which gives a great deal of useful information on BACME and answers some of the questions I had.
This is a great point re BACME. Who are they? Are they responsible for all the documentation that the CFS clinics use (assessment forms for intake of new patients, guidance on Care and Support Plans etc)? My specialist told me they were changing the intake forms and that my comments would be taken into account, which suggests each service doing their own but I doubt that is the case? Given they had not obviously changed since 2007, perhaps no-one knows themselves. I want to write to complain about aspects of my experience since being referred back (I haven’t attended in person or accessed their “therapy” service again) but I’m really not sure at whose door the problem lies. Is the specialist decent but hands tied by BACME? And if so, WHO are BACME?
An excellent article and perfect description of the Fatigue Centre diatribe in Australia. So damaging to true ME patients. Thank you for writing this, I will utilise it here in my personal advocacy.