By Bronc
Dr. Nina Muirhead is a dermatology surgeon and founding member of Doctors for ME in the UK. Since developing ME in 2016 she has done a lot to promote awareness of the disease writing and speaking to various health bodies across the world including a presentation shown at the 71st World Health Assembly.
She 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.
In the UK there are no training course on ME for health professionals. Dr. Muirhead has developed a free online training course on ME which can be found at Study PRN. It carries 1 CPD credit.
Dr. Muirhead took time out from her busy schedule to talk to us about her ME advocacy work.
Phoenix Rising:
How did you get involved in the field of ME advocacy?
Dr. Nina Muirhead:
I developed ME after a bad bout of EBV (also known as mono or glandular fever) in September 2016 from which I did not recover. I thought I would get better and continued to work and exercise eventually becoming severely affected by summer 2017.
I did not recognise that I had ME because I had not been taught about it at medical school, my symptoms were multisystem and debilitating.
Prior to having ME I did not believe in it as a real physical condition and was shocked as to how misinformed the medical profession are and how widely the disease is misdiagnosed, under recognised and underestimated by healthcare providers.
I was determined that if I did make some level of recovery that I would try to put my energy into addressing the knowledge gap between what we are starting to understand from a biomedical perspective compared to what the average healthcare professional understands.
Most medical students do not learn about ME as part of their training and it is not covered very well at a postgraduate level either.
Phoenix Rising:
Can you tell us about the medical training course on ME that you have developed for health professionals and how it has been received?
Dr. Nina Muirhead:
I collaborated with international colleagues and patients to develop a 10 case based question e-learning module for healthcare professionals who want to have an overview of ME/CFS and also to help them learn about diagnosis and management.
It has been very well received with many great comments from a variety of healthcare professionals. The module can be found here and has recently been updated to include the NICE guidelines and more recent relevant biomedical research including Long COVID research publications: Myalgic Encephalomyelitis | Chronic Fatigue Syndrome | CPD (studyprn.com).
The feedback data collected showed a significant increase in confidence of both diagnosis and management of ME after undertaking the module, as well as an increase in the recognition that more education and biomedical research is needed in this disease area.
Phoenix Rising:
Do you have plans to produce any more medical training courses on ME?
Dr. Nina Muirhead:
Yes I intend to produce further online learning for undergraduate and postgraduate healthcare training.
Phoenix Rising:
In October 2021 the National Institute of Clinical Excellence (NICE) in the UK issued its new guidelines for the treatment of ME which included 18 separate recommendations.
Do you think this guideline will lead to an improvement in the education/understanding of health professionals with regard to ME?
Dr. Nina Muirhead:
The 2021 NICE guideline is a huge step forward in improving understanding in that it highlights the dangers of exercise and the limitations of CBT.
However these major changes have been underestimated at a practical level where services need to revolutionise the specialist support offered to patients, this is a complex multisystem disease: re-naming and continuing old practices will not be good enough.
I think Long COVID clinics are now discovering some of the shortcomings of the old management models but are a long way off getting it right.
I do think there is more advice being given to rest and pace rather than exercise which is progress but patients want early diagnosis, social support and to be offered specialist doctor/physician led health care and medications for symptom relief rather than self management plans.
Phoenix Rising:
Are you aware of any clinical trials working on potential treatments for ME in the UK?
Dr. Nina Muirhead:
Cure ME, Decode ME, Nottingham and ME Research UK have all been working very hard towards this very goal. Every day I look at medical publications in the field in the hopes of new pieces of the puzzle being discovered.
The funding is still far short of what is required but the devastating Long COVID situation also gives me hope that more funding will lead to quicker answers and potential treatments.
Decreased NO production in endothelial cells exposed to plasma from ME/CFS patients – CureMe (lshtm.ac.uk)
Current projects (meresearch.org.uk)
PARTICIPAN
Phoenix Rising:
I believe that you are involved with the Decode ME GWAS study which was launched last year in the UK.
Can you give us an update on how the trial is going? Do you think this trial will lead to new treatments for ME?
Dr. Nina Muirhead:
I think DecodeME is a fantastic example of patients and scientists collaborating to enable biomedical research into ME happen at scale, I am very hopeful that it will generate some promising results that point towards which pathways may be involved in this disease.
This would ultimately lead to better understanding and perhaps even development of treatments, and may also help to establish subtypes. Home page – DecodeME
Phoenix Rising:
There are numerous studies pointing to the low quality of life of people with ME. What actions do public health authorities need to take to improve the life outcomes for people with ME?
Dr. Nina Muirhead:
Public health authorities have sadly underestimated the impact of ME and severe ME on quality of life and ability to work full time, this will put enormous pressure on the economy particularly if a subset of people with Long COVID have ME.
The social and economic burden of this disease should not be ignored and people with ME should be supported to live within their energy limits. I think it is a disaster for public health authorities that post viral disease was treated as psychological for so long and the historic lack of funds and biomedical research in ME will be very costly going forward.
We should have so many treatment options by now and instead there remain hundreds of thousands of young, previously productive people with a devastating and potentially long term disability.
The impact on quality of life is not only affecting the individual, sometimes parents give up work to care for children, partners suffer from a huge reduction in normal activities is also a massive impact on finances and their family members’ overall quality of life.
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Bronc is a former historian who is active in his local ME support group. He enjoys interviewing scientists involved in ME research to help himself and others better understand their illness.