Our view
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.
