If there are suspicions that a policy or procedure is not fit for purpose and/or causing additional problems or harm, during the review process would you not put a disclaimer on the current guidelines? For example – use with caution, proceed with care, use personal judgement when considering whether it is appropriate ‘treatment’. It’s a different issue but after the Grenfell Tower fire, during the review process, hundreds if not thousands of high-rise buildings had the cladding removed ‘just in case’. Graded Exercise Therapy is our cladding. We need to have it removed ‘just in case’ while this review process takes place.
The NICE guidelines surrounding Myalgic Encephalomyelitis (M.E), Graded Exercise Therapy and Cognitive Behavioural Therapy and their use on M.E patients are currently ‘under review’. M.E charities have been asking for a disclaimer to be added to the guidelines during the review process, NICE are yet to do this. I know personally of at least one suspected M.E patient who has been referred to a GET ‘specialist’ for ‘treatment’ in the past week or so. I am very happy that she has engaged with my advocacy and is fully aware of the issues surrounding GET and the possible consequences of taking part in this ‘treatment’, she is approaching it with caution.
NICE have now delayed the publication of the guidelines review until December 2020, in the meantime, patients continue to additionally suffer because of these inappropriate and often harmful ‘treatments’. ME Action states – ‘NICE argue that it is the responsibility of clinicians to make people with health conditions aware of the potential risks (and benefits) of any intervention they are offered’.
I would argue that most clinicians don’t take M.E seriously and are unaware of the issues being debated surrounding the PACE trial, GET and CBT. Of course, they will continue to recommend exercise if they believe M.E to be a psychological/psychosomatic condition. WHICH IT’S NOT. I’m not sure how much proof to the contrary they need to be convinced! M.E can be triggered by psychological factors such as grief and emotional trauma, but M.E itself is a physical, neurological condition.
I’ve seen two very visible topics on Twitter this week:
- Suicide and M.E
- NICE guidelines review
What worries me is that many desperately sick patients are holding on for change; holding on for a positive outcome in terms of the guidelines review. I’m going to play devil’s advocate for a bit. I personally think that PACE should be acknowledged as the flawed research that we all know it to be and GET and CBT should be banned for use with M.E patients.
Thinking realistically, how much change can we expect from this NICE guidelines review? Think about it. A number of psychologists have built their reputation on the idea that M.E can be ‘treated’ with exercise and that we can feel better by using talking therapies. If NICE did a 360-degree turn on their guidance they would be destroying careers and turning the tide on decades of misinformation. Misinformation that they have allowed to thrive and lead debates around the world for decades. The NICE review board consists of a range of disciplines, including psychology.
I will not be surprised if the most our community gets from this review is an official disclaimer that clinicians should use their own judgment. If this is the case, I hope NICE recommends formal training for ALL clinicians on M.E. Surely you must know about an illness in order to be able to use your own judgement?
So I am pleading with the M.E community to not get hopes up too much because suicide and ‘holding on’ are big factors within our community. I fear this will be one piece of ‘making no progress’ too far for many to deal with.
As a global community, I know we will keep fighting against this injustice until we see real change but I think we need to be realistic about what will be achieved in December 2020. Thank you to the M.E research representatives who are making our voices heard on the panel and for working so hard for us. Your efforts are deeply appreciated.
and Foggy (OBVIOUSLY)