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Revisiting NICE Expert Testimony on ME/CFS education and training: Dr. Nina Muirhead

The following expert testimony was provided to the NICE ME/CFS Guidelines Committee by Doctors with M.E. Director, Dr. Nina Muirhead. It regards the problematic context of lacking information, education and support for health and social care professionals.

Information, education and support for health and social care professionals providing care for people with ME/CFS.

Summary testimony

Thank you for this opportunity to use my experience of being a patient, healthcare practitioner and medical educator to provide a testimony on ’Information, education and support for health and social care professionals providing care for people with ME/CFS’.

I became ill with ME/CFS in 2016. I was severely affected for much of 2017 and am now moderately affected. My understanding and belief in the illness has completely changed since becoming ill. I have first-hand experience of the negative impact of ignorance of the illness among health and social care professionals and the harm it can cause. I have also taken the time to research undergraduate and postgraduate education and resources. This includes forging links and connecting with individuals in healthcare education roles in the UK, Scotland, Ireland and Wales as well as meeting with international colleagues involved with ME/CFS research and education.

In the UK our ME/CFS charities’ websites are a fantastic resource for information, education and support, (1) but are not often accessed by health and social care professionals.

As a doctor I did not recognise the illness myself. Current education and information convinced me I did not have ME/CFS. I saw 13 different doctors before I was diagnosed. The information, education and support provided by the NHS (2), Healthcare Education England HEE (3), Universities (4) and Royal College of General Practitioners (5) is outdated, misleading and does not fit with the patient experience. Education based on theories of deconditioning and fear avoidance of exercise lead the professional to believe that the patient will respond to reconditioning and may recover with cognitive behavioural therapy (5). This is in direct conflict with the neuroimmune exhaustion, exacerbation of symptoms and post exertional malaise described by patients, supported by research showing that exercise deteriorates physical performance and increases lactate in patients with ME/CFS(6). The incongruity between current education of professionals and the experience of patients compromises the relationship between patients and health and social care professionals. Or worse has the potential to cause harm (7,8).

Complete testimony

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Dr. Nina Muirhead

Director

Dermatology Surgeon, Chair of CFS/ME Research Collaborative Medical Education Working Group, Forward ME representative, Expert Witness, UK National Institute of Health and Care Excellence.

BA(Oxon), BMBCh(Oxon), MRCS, DOHNS, MEd, PGDipDerm

Dr. Nina Muirhead is a Dermatology Surgeon at the Buckinghamshire Healthcare NHS Trust and is a founding contributor to Doctors with M.E. Since becoming ill with M.E. in September 2016, she has done much to raise awareness of M.E., speaking and writing in various forums in the UK and abroad, including the Cambridge GP Society, the Canadian Institutes of Health Research, the Royal College of Physicians and the British Medical Journal.

Dr. Muirhead is Chair of the CFS/ME Research Collaborative (CMRC) Medical Education Working Group and a member of the Forward ME group of UK ME charities. She is also author of the free ME/CFS online training module on Study PRN, which carries 1 CPD credit. Dr. Muirhead is active in research and education, and supervises several medical students on their projects on ME/CFS.

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