What’s been happening at NICE?
The National Institute of Clinical Excellence (NICE) is re-writing its guidelines on ME/CFS. Health professionals in the UK base their care of people with ME on these guidelines, and they are influential globally. Since their inception, patients and their families have found the current guidelines detrimental to care. Last week, NICE announced the committee that will write the new guidelines — and it was not good news. We are demanding NICE reassess the suitability of the professionals they have appointed and make changes accordingly.
[button_color url=”https://act.meaction.net/page/7697/action/1″ content=”Take Action! Email NICE Now!” target=”https://act.meaction.net/page/7697/action/1″]
What’s the problem with the committee?
Several professional members have conflicts of interest that may lead to bias.
Dr Gabrielle Murphy was coauthor of the PACE trial, said to be “one of the biggest medical scandals of the 21st Century” by Carol Monaghan MP. Joanne Bond-Kendall is involved in ongoing clinical trials delivering treatments that will be under question. These trials have many of the same methodological flaws as the PACE trial. Dr Chris Burton continues to conflate ME with Medically Unexplained Symptoms, a new and evidenceless category that supposedly contains dozens of different hard-to-treat, chronic illnesses. And Dr Alan Stanton has referred a child with ME to social services after their parents followed another consultant’s advice and refused the therapies he was proposing. He recommended the child be placed in a psychiatric ward.
The majority of the appointed professional committee members have undertaken research or clinical work relating to the psychosocial model of ME. This model is at odds with research and the international consensus on best practice. A guidelines committee comprised of professionals practising a psychosocial approach to ME is comparable to a committee investigating climate change dominated by climate change deniers.
We are especially concerned that well-qualified ME nurses, doctors and scientists linked to ME charities have been turned down from the committee.
What do we want?
The biased committee members must be replaced with independent clinicians and researchers.
NICE have said that they don’t review aetiology, pathology and biological research. Due to the paucity of clinical research in ME, however, there is a lack of available and sufficiently evidenced treatment. This means that in order to write up-to-date guidelines, we need to create a committee of highly-skilled individuals with enough scientific and medical expertise to assimilate and disseminate this information.
NICE needs to introduce independent clinicians and professionals from other fields into the process. Without this, and without the excluded ME experts, the guideline is destined to be a foregone conclusion.
NICE have said recently that they have spots open for four to five additional committee members.
[button_color url=”https://act.meaction.net/page/7697/action/1″ content=”Click here to help make this happen” target=”https://act.meaction.net/page/7697/action/1″]
What is #MEAction doing about it?
Our first step is to campaign for some of the professional appointees to be replaced.
We are in contact with other charities from around the UK. We have written to NICE requesting the ‘register of interests’ (NICE’s terminology for the conflicts of interest information they release) be made available immediately.
What can you do about it?
Use our tool and let NICE know why the situation in the UK needs to change, and why those who follow these outdated models cannot be trusted with patient care.
For too long patient voices have been suppressed, and science has been ignored. We deserve an unbiased committee who will create guidelines based on the best possible evidence.
[button_color url=”https://act.meaction.net/page/7697/action/1″ content=”Let Your Voice Be Heard!” target=”https://act.meaction.net/page/7697/action/1″]