Unfortunately the legal challenge over the UK NICE Clinical Guidelines for ME/CFS has been ruled in favour of NICE.
I am deeply profoundly saddened by the news.
I suspect it’s a victory for NICE based on technicalities and legal smoke and mirrors.
If they they indeed did follow their own procedures rigidly to produce these guidelines, which are unfit for purpose, it just proves that their processes are flawed.
That they can disregard medical expertise and biomedical research, but be so swayed by a small but powerful number of CBT and pyschiatric focused lobby is an absolute disgrace.
These guidelines offer 2 “treatments” which are management or coping strategies at best. They seriously undermine GP and Consultants ability to work with patients to find the best management and treatments for their needs. They muzzle their ability to explore ME/CFS and to treat patients with drugs and therapies that can be useful. These guidelines at best needlessly restrict the quality of life of ME/CFS patients can expect and at worst push them into “treatments” that will worsen their health to alarming levels.
It sends the wrong signal to doctors, patients, media and every ordinary person (some of whom will one day be diagnosed with this illness and face the same obstacles as us). And this signal will travel around the world.
I can only cling to hope.
You might be interested in:
- 25% Group response to judgement (from ME Agenda blog)
- Eastern Daily Press report on outcome of Judicial Review (from MEA site)
- NICE statement on judgement (from ME Agenda blog)
- AFME response to judgement
Even Action for ME who support the NICE Guidelines have voiced concerns about the treatment recommendations and the NICE response to the judgement