Doctor Nina Muirhead is a graduate of Oxford University who works as a Speciality Doctor in Dermatology Surgery, as well as being Chair of the CFS/ME Research Collaborative Medical Education Working Group, a Director of Doctors with M.E., Forward M.E. representative and Expert Witness for the National Institute of Health and Care Excellence (NICE). She is involved in M.E. research and education and has written a free ME/CFS online training module for healthcare professionals. I was interested to interview Doctor Muirhead, as a medical professional and person with M.E., and she very kindly agreed to answer my questions.
Can you tell me about your experience of ME?
I began to get ill following a series of viral infections in 2016 including acute Epstein Barr Virus, Cytomegalovirus and other enteroviruses. I continued to work but increasingly experienced feeling flu-like with headaches, sore throats, chest pain, shortness of breath, change in smell and taste, muscle bone and joint pains, sensory hypersensitivity, urinary frequency, postural tachycardia, word finding difficulty, tinnitus, problems with balance, muscle twitching and tingling and overwhelming exhaustion. Looking back, I was also experiencing post exertional malaise but it was delayed by a few days and I had not made the connection as I was well within my previously tolerated exercise and working capacity.
How has being unwell with ME affected your career as a Doctor?
I am fortunate to have chosen a specialty where part time work is acceptable and there are fewer physical demands with long on-calls, out of hours work and standing or walking long distances around the hospital. If I were in a different specialty, orthopaedic surgery for example, I may not have had the physical energy capacity to maintain my career which would be devastating. I am sure there are doctors with Long COVID who are still wondering if they will be able to get back to work. Keep hope and aim to work within your limitations, if you can.
How has it been navigating the healthcare system as a Doctor with ME?
There is an urgent need for mandatory training about post viral disease. I have had a full range of responses from compassionate colleagues to disbelief and dismissal. Fortunately, my department, and my GP, have been incredible and it has made a huge difference to my life coping with adjusting to having a chronic illness, it is amazing to have their support.
Can you tell me about your involvement with Doctors with M.E. and what the organisation hopes to achieve?
Doctors with M.E. was founded by a doctor with M.E. Dr KN Hng, earlier in 2021 we are a new organisation. We aim to help educate doctors about the ME/CFS scientific narrative and reduce their risk of harming patients through lack of understanding of the disease. Doctors with M.E. has already started to attract the interest of hundreds of international professionals both in general practice and specialist ME/CFS care. It is a not-for-profit organisation and our annual membership is affordable. Our Honorary Fellows include many of the world leading research scientists and clinicians in this field. Our mission is:
To improve [ME/CFS] patient outcomes worldwide by empowering medics, scientists and policymakers with up-to-date practices and scientific rigour, fostering collaboration between professionals, the industries they serve, patients and the public.Doctors with M.E.
In your article Doctors Believe in ME you mention proactive coding for ME and Long COVID – so that doctors start to record accurate figures in terms of numbers of patients affected. Do you think that Doctors receive enough training in relation to ME and Long COVID to be able to make these diagnoses, or is it an area where education and awareness (and possibly acceptance?) needs to be increased?
There is an urgent and pressing need for better education, very sick patients with post viral neurological disease, including Long COVID, are being dismissed as anxious or depressed. Patients presenting with a long list of multisystem symptoms, post exertional symptom exacerbation, disturbed sleep and fatiguability reducing pre-illness capacity to <50% should be a red flag for doctors recognising this disease and to start advising patients to rest and pace.
There is an urgent and pressing need for better education, very sick patients with post viral neurological disease, including Long COVID, are being dismissed as anxious or depressed.
What is your take on the updated NICE Guidelines for ME/CFS that are due for publication?
The guidelines start us on a new track to recognising ME/CFS and supporting patients. Patients need accessible, compassionate care, recognition of the impact on their quality of life and the quality of life of their family members, mobility aids, regular review and symptom management. The guidelines highlight the need for better education and increased research. If they are implemented well, they could bring an end to wasting resources on patient blame models.
Do you feel hopeful that, with enough funding and research, it might be possible to find appropriate treatments and even a cure for ME?
UPDATE: 29th October 2021 – Watch Doctor Nina Muirhead talking to Touch Immunology about the updated NICE Guideline for ME/CFS.