Includes "expert comments" from Prof. Brian Hughes, Caroline Kingdon, Dr Karl Morten, Dr Charles Shepherd, Dr Nigel Speight, Dr David Strain, Dr William Weir, Dr Asad Khan, Dr Ben Marsh, Dr. Shaun Peter Qureshi, Dr KN Hng, Dr Nina Muirhead, Dr. Keith Geraghty, Dr. Richard Ramyar & me
https://doctorswith.me/nice-2021-a-triumph-of-science-over-discrimination/
[Minor comment: I think my profile description wasn't written by me]
I do not share your hopium regrading the new guideline.
I have many issues with the new guideline that effectively takes us back to 2007 pre CBT and GET.
I do not believe that the new guideline will makes any improvements to my life as I struggle with this hellish illness that has taken so much from me. My GP agrees with me in that sentiment after we spent quite some time discussing it.
Where is the acknowledgement that NICE and the rest of the medical establishment have caused much harm to pwME due to their scientific dogma by insisting on therapies such as GET/CBT?
Where is the commitment to provide training for GP’s so that they have an up-to-date understanding of the latest medical research into the illness?
There is no commitment to provide any increased investment into biomedical research that would establish the causes of the illness, to facilitate early diagnosis and find effective treatments for it. It would appear that this vitally important work is yet again to be left to the ME medical charities.
For those of us living off disability benefits how will this guideline helps us?
There is no recognition of the fact that large numbers of people with ME have significant problems accessing disability benefits such as ESA/PIP. In an FOI request I found that nearly 50% of pwME were having their claims for ESA turned down.
Nor is there any commitment for any independent support to help people navigate their way through the punitive benefits system. The Tory government has plans to step up its persecution of disabled people on legacy benefits.Will this prevent job centre 'work coaches' from discriminating against people with disabilities they don't believe in or are hostile in? No it won't.
We live in an era where our current government is determined to complete the wholescale privatisation of the NHS. Privatisation leads to a worse service for our citizens. I do not believe this bodes well for an improvement in NHS services for pwME.
