Rob asks Dr Nina Muirhead ‘What is ME?’
Rob Messenger shared his motivations for raising funds and awareness for ME by walking 500 miles over 100 days and climbing a total of 65,000 feet in 2 previous blog posts: Fundraising success and Awareness raising. Now he shares reflections of his Discussions at Dawn videos:
I approached Dr Nina Muirhead (Doctors with ME) and Karen Leslie (Physios for ME) to lead off the first two discussions, and, to my delight, they both said “Yes”!
Unfortunately, ME has had a difficult and controversial history, to the great detriment of patients (it’s time this was put right!), and it’s an illness which is still often misunderstood by the public, and by health professionals who have traditionally received very little and/or poor training about it. So, I gave the first Discussion at Dawn a straightforward title, ‘What is ME?’ – it seemed the obvious place to start.
What is ME?
As a person with ME, a senior doctor and medical educator, Dr Muirhead was really well placed to give an introduction to this question in an up-to-date, easy-to-understand way. She talked about the growing biomedical research evidence which shows that ME is an illness affecting multiple systems in the body, causing a wide range of debilitating symptoms which can profoundly impact people’s lives. She explained the meaning of post-exertional malaise, the ‘cardinal symptom’ of ME, its debilitating impact, and how difficult it can be to manage.
ME can be mild to very severe
We discussed the levels of severity at which the illness can be experienced, something not widely understood, even in the medical profession. Dr Muirhead said,
“…the type of existence that a person with very severe ME has, is almost aligned with end-of-life care for very sick patients who are dying”.
No hyperbole here – our own severely affected son has spent time in palliative care.
At this point in our discussion there was a long pause whilst we both got a bit upset.
Dr Muirhead had been severely affected, herself, but had improved to the point where she now described herself as being at the ‘Mild’ level (Take a look at the severity levels in NICE Guidelines).
I asked what this meant in terms of her ability to function on a day-to-day basis. She explained that being ‘Mild’ meant that she had been able to return to work as a dermatological surgeon on a part-time basis, but this was dependent on her being able to plan ahead and build in days of rest, doing her admin from home, actually taking all week to do a half-time job.
She felt lucky that she’d been able to manage some short walks in the woods with her family again, but other activities she used to enjoy, like running and cycling, were out of reach. She was still dealing with ME symptoms every day, including sore throats, headaches, muscle pain, brain fog and cognitive difficulties (including reading for work) and her symptoms were fluctuating week on week, month on month. So, not so mild, after all!
Long COVID and ME?
I asked about Long Covid, and whether its emergence had led to a better understanding of ME. She explained that a significant subset of people with Long Covid are experiencing a wide range of symptoms which are
“…fitting into more of an ME-type picture…The only difference is that we know that Covid was the trigger for their chronic, post-viral, multi-system disease”.
The government needs to invest in biomedical research, she added, to get to the bottom of post-viral illness, because, with up to a million people in the UK estimated to be affected by Long Covid of whom about 400,000 are still experiencing symptoms after 3 years, there could be significant economic implications for the country in years to come.
The need to educate
Her personal experience of ME, an illness she knew almost nothing about before she became ill herself, has led to Dr Muirhead becoming an advocate for better medical education about the illness. Currently the condition is
“…not only poorly understood, it’s poorly diagnosed with patients often waiting years for a diagnosis, and it’s poorly taught”, she said.
Her own research has revealed that the majority of UK undergraduate medical programmes have no taught element on ME. So, she has written a free on-line accredited CPD training module to start addressing this deficit. You can find it here
She’s also a director of Doctors with ME, a global professional association for medical professionals in the field – led by medics who suffer from ME themselves; Chair of the CFS/ME Research Collaborative Medical Education Working Group; a rep on the Forward ME group; an expert witness to the last review of the NICE ME/CFS Guideline.
A big THANK YOU to Dr Nina Muirhead for taking part in #500miles4ME and for all she’s doing to help raise awareness and improve the lives of people with ME.
A couple of comments we received from people who’d watched this Discussion at Dawn:
“Thank you so much for this. I have been living with ME for 20 years, and it is so encouraging and validating that people, particularly in the medical profession, are pushing for it to be taken seriously.”
“Thank you for doing this. I’ve been more or less bedbound for 6 years. Not left the house in 2 years. No carer. Human contact overwhelms my system. I just do what I can to survive.”
Next time in Blog 4: I’ll talk about my Discussion at Dawn with Karen Leslie of Physios for ME, when I asked her “How come an old bloke like me, with dodgy knees, can walk 5 miles a day, push and puff my way up this steep hill, go home, have a rest, come back tomorrow and do it all again, and every day I’ll be getting fitter and it’ll be getting easier – but it’s not like that for people with ME?
See all Discussions at dawn interviews
