'Attitudes and Education of Professionals' section refuses to take on board the lived experiences of people with ME
Episode 3 | Blogging my way through the Department for Health and Social Care's Interim Delivery Plan for ME/CFS
There is a lot wrong with the Attitudes and Education of Professionals section of the DHSC’s interim plan for ME/CFS. I’ve listened to it a few times and each time I got so angry it was hard to know where to start. I will eventually put together a coherent and relatively polite response to submit on behalf of the ME/CFS Medical Education Campaign. In the meantime, here are a few thoughts.
‘Problem Statement 2’, near the top, reads: There is limited objective evidence for what current attitudes are towards ME/CFS among most health, social care and other professionals. This is one of those lies that is strictly speaking true, but is nevertheless in a real and practical sense a falsehood.
We know very well what current attitudes towards ME/CFS are among most health, social care and other professionals. We know that they:
Lack medical knowledge about ME/CFS
Incorrectly believe that it is minor and self-resolving
Incorrectly believe that is psychological or partly psychological in nature
Believe that patients with ME/CFS are likely to be dishonest, manipulative, untrustworthy, and unreliable narrators of their own experiences
Believe that patients with ME/CFS complain too much
Believe that patients with ME/CFS waste their time
Believe that patients with ME/CFS are likely to be hypochondriacs
Believe that some patients with ME/CFS are aggressive ‘activists’ who ‘harass’ researchers
Believe that patients with ME/CFS are attention-seekers
Believe that patients with ME/CFS are malingerers
We know all this because people with ME have been saying it for decades. Every charity and patient group says the same thing. Thousands upon thousands of patients up and down the country say the same thing. The few clinicians with real knowledge of ME say that they are ashamed of the attitudes and behaviour of their colleagues. It’s literally included in the NICE guidelines. There are documentaries about it.
You could write: There is limited objective evidence that most children love birthday cake, and strictly speaking this is true, because (to my knowledge) no-one has bothered to carry out a large-scale study to determine the attitudes of children to birthday cake. This doesn’t change the fact that most kids love the stuff, and everybody knows it.
This ‘Problem Statement’ shows disrespect to the lived experiences of the ME community. It shows an unwillingness to take on board our history and our experiences. It shows a refusal to listen to us and believe us. It’s not a good start.
Worrying when ‘lived experience’ isn’t evidence enough.