BACME position paper: comment and feedback
October 21, 2020
The British Association for CFS/M.E. (BACME), a network for UK clinical M.E. professionals, aims to “champion clinically effective practice in treating CFS/ME [sic] and other primary fatigue conditions.”
This week, it published a position paper on the management of M.E./CFS.
Below we set out our view on this paper, and invite you to share your own feedback for us to take to BACME, which has said it is interested to hear thoughts and comments on this document.
While we welcome BACME’s clarity around the serious and complex nature of M.E., its support of research “into the biological causes and mechanisms of the illness,” and its refuting of the deconditioning model “as a primary cause for the condition,” we have a number of serious concerns about the statement and its potential impact in practice.
BACME says it “supports grading activity strategies when delivered by an ME/CFS specialist clinician to make increases and improvements in physical, cognitive and emotional function from an identified stable baseline.”
However, this is at odds with data from our 2019 Big Survey of more than 4,000 people with M.E. – see below.
We question why BACME have put this statement out before the consultation on the updated NICE guideline is completed, given that the latter is being led by people with M.E. and clinicians reviewing a huge body of evidence, including patient-reported outcomes. BACME’s condition also contrasts with the recent move by the Scottish Government highlighting the harms associated with graded exercise therapy (GET) and cognitive behavioural therapy (CBT).
We are very concerned that pacing is not mentioned at all, despite people with M.E. repeatedly reporting this approach to be of most benefit in supporting them to manage symptoms.
We find the references to the recovery-focused rehabilitation and the “best available clinically effective treatments” for M.E. to be misleading, when a majority of people with M.E. tell us that the strategies they most frequently use – including pacing and medication for individual symptoms – are focused on keeping symptoms within manageable levels, rather than recovery.
What our Big Survey found
Our Big Survey found that less than one in ten (6%) respondents said GET helped manage symptoms, while 13% said it made no difference, and more than a third (38%) said it worsened symptoms.
Even when GET was undertaken with a practitioner who understands how M.E. affects them, offers a supportive and collaborative relationship and is an equal partner in the treatment, it still had a worsening effect on symptoms. Outcomes were worse for those who saw an M.E. specialist, with almost half experiencing a worsening of symptoms.
Our Big Survey also found that of those who tried CBT in the last five years, 41% said it made no difference while 13% said it worsened symptoms. One in four said that the professional they worked with did not understand how M.E. affects them.
If you would like to share your views about BACME’s position paper, please email firstname.lastname@example.org.
We will collate and share these with BACME’s executive board with the intention of opening a constructive dialogue.