Question
How can we ensure that important biomedical research information about the cause and treatment of ME/CFS is getting through to policy makers and health professionals so that people are treated correctly?
Answer
That’s a very good question! However, it’s important to note that most clinicians already have far more information arriving than they can read each week. So unless a doctor has a particular interest in ME/CFS, they are not going to read long research papers on ME/CFS – unless they contain a real breakthrough in cause or treatment.
And, while it’s also important for doctors to be aware of what causes a disease, their main interest is in diagnosis and management and results from clinical trials that are assessing possible forms of treatment.
When it comes to improving management of ME/CFS, most of the relevant evidence-based research information and guidance on management of ME/CFS is already there in the form of the new NICE guideline. The big problem is getting health professionals to read and follow the NICE guideline recommendations – as well as persuading health service commissioners to make sure that existing referral services are following these recommendations, and that new clinical services are set up where none currently exist.
As you may be aware, the MEA has sent our guide to the NICE guideline on ME/CFS to all GP surgeries in the UK, along with information on early and accurate diagnosis of ME/CFS and a copy of the MEA ‘purple book’. This book summarises and references all key research findings on causation and is free to all doctors. We also arranged a further medical education programme mail-out to GP surgeries in the autumn and a quarterly medical magazine which contains all the latest research news. All of these resources are freely available to healthcare professionals.
Medical education on research into the cause and management of ME/CFS clearly can’t be left to the charity sector alone. I hope that, once the DHSC Delivery Plan is finally published in March, this will be accompanied by a real effort from the Department of Health and the Royal Medical Colleges, and the Medical Schools Council, to vastly improve what they are doing to provide medical information and education on ME/CFS.
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MEDICAL DISCLAIMER
We recommend that the medical information is discussed with your doctor. It is not intended to be a substitute for personalised medical advice or treatment. You should consult your doctor whenever a new symptom arises, or an existing symptom worsens. It is important to obtain medical advice that considers other causes and possible treatments. Do not assume that new or worsened symptoms are solely because of ME/CFS or Long Covid.