The ME Show

Episode Eight - Dr Nina Muirhead

March 18, 2019 Season 2 Episode 8
The ME Show
Episode Eight - Dr Nina Muirhead
Chapters
The ME Show
Episode Eight - Dr Nina Muirhead
Mar 18, 2019 Season 2 Episode 8
Gary Burgess
Gary Burgess speaks to Dr Nina Muirhead who, herself, has ME and now campaigns to raise awareness of it among her medical peers.
Show Notes Transcript

Gary Burgess speaks to Dr Nina Muirhead who, herself, has ME and now campaigns to raise awareness of it among her medical peers. In this conversation she talks about her own experience of understanding ME as both a medic and a patient, and of her work to ensure the new generation of medical students have a better understanding of the illness.

Dr Nina Muirhead on MEpedia - https://me-pedia.org/wiki/Nina_Muirhead
The video that inspired this episode - https://www.youtube.com/watch?v=19ehJpZ4g9M
Follow Gary on Twitter @GaryBurgessCI



Speaker 1:
0:08
Hello, I'm Gary Burgess and welcome any show supported as always by the any association in the series. I'm meeting experts working to treat those with Emmy or research. It's cause to find a cure. And in this episode I speak to doctor Nina Muirhead and she's a doctor who specializes in oncology and dermatology but who herself has Amie and now devotes so much of her time raising awareness of Emmy, particularly among her medical peers. I hope you find this chat as interesting as I certainly did. Dr Nina Mule had welcome to the Emmy show. How are you today?
Speaker 2:
0:47
Oh, I'm having a good day. Um, obviously you can't always tell what it's going to be like, but today is a good one. So I'm really keen to get chatting to you and talking about my experiences.
Speaker 1:
1:00
I am delighted. I'm glad the stars have aligned and we've got both of us on a good day. That should, that should ease things tremendously. Be before we talk about you and me, I just want to talk about you professionally. First of all, the people you don't know who you are. I, I didn't know you till someone shared with me a, a video when you were giving a presentation about yourself and your own Emmy experience and journey, but prior to that your, your career is in medicine.
Speaker 2:
1:27
That's correct. So I'm a dermatology surgeon, which means that my day job is cutting out skin cancers and I've worked for the NHS since 1999 I trained at Oxford. I then worked in various London and hospitals training in surgery, plastic surgery to begin with. And then in 2014 I changed across to dermatology and, um, I didn't really get taught about and me doing any of that time, uh, during my training. So when I became ill in 2016, it was buck that this was an illness that I didn't even know about.
Speaker 1:
2:10
Am I right in saying not only an Ellis you didn't really know about, but perhaps an illness view you didn't even believe in back in the day?
Speaker 2:
2:18
Correct. Um, so in sort of the back of my mind, I had some sense that it was often after a glandular fever virus and that people would end up very ill in bed for several months and I truly believed that perhaps there was an element of deconditioning or perhaps a bit of depression, but my experience personally was the complete opposite. I become ill in the September, 2016 with a series of viral infections. I had chest infections, sore throats, diarrhea and vomiting, sinusitis, high temperatures, and I continued working because I deal skin cancer patients. I felt that I couldn't keep taking sick leave. I just carried on working the whole time and I even carried on exercising. I went to [inaudible] classes, I went to circuits, but the entire time I just became sicker and sicker and less able to manage even basic things. So I couldn't think straight. I was having trouble planning meals. I was driving around the car park at work trying to get as close as possible. I was using disabled toilets, starting to choose different clothes to make them easier to get on and off. So I was constantly adjusting to try and continue as normal whilst being extremely ill until I finally collapsed in April, 2017
Speaker 1:
3:48
this elements of your story, which is what came across on the video I watched and I'll put the link to it in the show knows, is the bit where it felt like your life and my life, we're mirroring each other. I look back now and realize the, the madness of it, but, but it's, it's that lifelong instinct isn't it, where you're real, you fight through it. Oh exercise, we'll, we'll get you better pull yourself together. You're letting other people down. It's all the very worst things you could be doing for yourself.
Speaker 2:
4:20
Absolutely. I mean I was really pushing myself. Um, one of the first things that rang alarm bells with the GPS that I said I took three or four hours to empty the dishwasher and she said, if you're that ill, you shouldn't be emptying the dishwasher. But in my head I was still driving myself to try and keep things going as normal in the house.
Speaker 1:
4:44
And there is an expectation that that will then fix itself over time. But there's just takers on over that period of time when your body finally went pop and you finally realized, no, you're not going to win this battle.
Speaker 2:
4:58
Well, I did try to return to work a couple of times after just taking two weeks off initially and then a further week. Um, and but on the second occasion I did a half day of freighting list in the morning and I started trying to walk down the corridor or to leave the hospital and the walls and the floor were moving. It was like I was on the titanic and I was literally close to collapsing. Um, and I thought, this isn't safe. I can't actually continue as a doctor practicing if I can't walk up the corridor without the whole thing swimming. And when I finally did realize that I had to rest, it was such a shock as to how low my capacity was. Looking back, I couldn't even read very well at that point. I had stopped watching television because that was too much of a sensory overload. I'd really cut all of my social activities and my whole life was imploding and in the end I spent four to six months mainly in bed and for four of those months I was nursed by my parents.
Speaker 1:
6:15
Goodness, it's a time in your life when you also realize which are the people who matter. So knowing there were some good people around you is absolutely vital about boring.
Speaker 2:
6:27
It was fine and it was also heartbreaking for me because my young children were then aged two and four and a half, five and I couldn't actually spend more than a few minutes with them. I couldn't pick them up because my arms were in agony. I couldn't listen to them talking to me. I couldn't concentrate on what they were saying. And so I had to live apart from them to enabled me to recover enough capacity to spend even just 10 minutes a day with my own children, which is Arandas for mother.
Speaker 1:
7:05
Oh my God, I cannot even imagine Martin. And whilst all of that is going almost your professional life is on hold, your family life is suddenly distorted and you are going through this living hell for want of a better description at that point you, you don't have a label for it either.
Speaker 2:
7:25
No. So I delayed my own diagnosis for a good three months having had the positive glandular fever result in the April, 2017 which had clearly had for probably about nine months before that. Um, I then looked on the nice website about Emmy chronic fatigue syndrome and I read that this was an illness that would get better with cognitive behavioral therapy and graded exercise. And I thought, well that's not what I've got because I'm mentally extremely strong and exercise makes me worry though. I completely disregarded that diagnosis for myself for a good three months. I thought maybe I had a brain tumor or multiple sclerosis.
Speaker 1:
8:19
It feels like parallel lives. I did the same sort of playing doctor Google stumbling across Emmy and reading it and thinking, yeah, yeah, yeah, that's me. That's me. But then you go through the guidelines and I know it's not me because this, uh, this, this exercise thing is really not the right idea and then stumbling across ms as the next best fit. So, so when eventually the did you get to finding out? It was me.
Speaker 2:
8:44
So I have a lot of credit to and to my fantastic GP who in July, 2017 so nearly a year after I'd started getting ill, uh, listen to me, I had to write everything down because I couldn't even remember things. Once I was in the consultation, my heart rate was 140. I couldn't think straight. I couldn't even make eye contact. But I'd written down things like, um, I can't read, I can't concentrate. Um, I've got the sore throats every, every week. I've got sinusitis, I've got muscle pain. And she said, I know what you've got within about five minutes.
Speaker 1:
9:32
Is that point of relief or is that points a heartbreak that you've been through all of this to get something that only took five minutes in the end?
Speaker 2:
9:41
Um, I think it was a relief. Any doctor who has pretty been putting off diagnosing a patient should just go ahead and diagnose them and not worried that they're going to be upset because it's a horrible diagnosis to have. But at least it's a start of being able to be kind to yourself and give yourself a break and rest and know that there's nothing mental causing the lack of energy in your cells.
Speaker 1:
10:13
What happened since then? Because between then and now, I mean there's, there's a whole world of professional change, which we'll come on to, but in terms of Nina, rather than doctor Nina, just just Nina looking after herself and doing the right things, what, what did you do?
Speaker 2:
10:28
Okay. Well, I spent most of 2017 in bed and I literally pulled back everything I pulled back or my social engagements. I stopped work completely. I didn't do any meal preparation or cooking or housework or anything. So I had a total break and every time I started to try and take on little things, I remember trying to order a few things online for Christmas in 2017 18 and even that was absolutely exhausting. So I had to find my baseline and really draw everything back until I could function without head crushing headaches, neck pain, sore throats, total fog. And as soon as I got a little bit of clarity and the fog began to clear, I'd be very careful about what I took on. And I have, I made a lot of mistakes in the early days. I tried to do a lot too quickly, or if I'd have a good day, I do more mentally at more physically, which would be a disaster.
Speaker 2:
11:50
So I've learned to sort of spread it out throughout the week. And it took me another nine months to work up from going into work for half an hour a week to six hours a week. And again, that was in fits and starts and I really had to pace myself. But by the summer of 2018 I was able to say yes, I'm ready to take on just a couple of afternoons a week and I split them between a Tuesday and a Friday afternoon. So I've got a couple of days to rest in between and now I am managing that and I'm starting to get a little bit more comfortable with managing that.
Speaker 1:
12:35
And Are you able to resist the temptation to think I've cracked this, I'm the hero of the world. I can do more.
Speaker 2:
12:45
No, I still want to be the hero of the world. I still want to do more. Um, it's difficult isn't it? I have to, I have to constantly be on my own case to rest and I've had to employ family members to tell me when my eyes are drooping and I'm not making sense anymore to literally bully me back into the bed or go and have an Epsom salt bath or stare out the window and just reboot your battery.
Speaker 1:
13:18
They sound like a good bunch of people, uh, lesbian bike on to your professional life. Now, it sounds to me that from from working on sting counselor cases, you're, you're now becoming an evangelist for Emmy awareness raising. Tell me about the work you're doing.
Speaker 2:
13:37
So aside from the dermatology worked that I was doing, I already had a great interest in education. So I have a master's degree in education. I've co written a couple of medical textbooks. I a lecturer at the Road Society of medicine and have done various anatomy study weekends for medical students. So when I started coming around from my coma like state, which I was in for several months when I was very fair, I started reading about Emmy. I could really tell there was a huge gap in knowledge between what the patient understands and what's the general doctor, particularly my generation of doctors understand. Some doctors don't even know about it, others are completely misled and think it's, there's a psychological component to perpetuating the illness, which I genuinely don't believe. So I think I thought to myself, what can I do? I can use my skills in education to try and bridge this gap. And that's staffed. I'd Bernie.
Speaker 1:
14:56
And since then, you've now worked up not just one, not just two, but you're currently working on three different projects to, to, to spread the good news of this work.
Speaker 2:
15:06
Correct. So I started to think how can we find out what's going on now so we can implement suggestions for change in the future. One of the things I'm looking at is nationwide, what medical schools are teaching on this topic. Obviously it's been 18 years since I attended medical school and a lot has changed since then and I certainly know that the delivery of subjects like fibromyalgia have improved considerably. Uh, so I want to know what is being taught right now, UK wide by medical schools about how me and what the variety is. Like whether students meet patients with this condition. It's very common in the UK. It's more common than HIV and multiple sclerosis combined. And they do feature on the syllabus. So I want to see how Emmy features on the syllabus and how that is different around the country and maybe even offer universities UK wide, some learning materials, either videos or elearning so they can standardize it more. To the rapidly changing by a medical information on this topic, which is emerging through research.
Speaker 1:
16:27
It's worth a, pardon my ignorance here. I guess it's just worth me clarifying. Whereas we have standard guidelines on patient care. Does that imply there isn't a standard teaching curriculum of medical students up and down the country when it comes to something like Amie?
Speaker 2:
16:41
Yes, Gary, you're absolutely right. Um, each medical school [inaudible] their own sort of what they teach and often employee, very senior academic lecturers who, who stare that teaching and they can often be quite protective of what they teach. And yes, it's very individualized to each university.
Speaker 1:
17:06
Very individualized. Sounds like a beautiful euphemism for some of it can be wildly wrong because it's some muddle professors sticking their ways based on what they learned in 1955.
Speaker 2:
17:20
Um, I, I wouldn't be so critical now. I think the medical school, fantastic job, they've doubled in numbers since I applied to medical school at the new universities are really sort of tapping into quite a lot of modern evidenced based. But I think with, we are in a definitely different situation. It's almost like an emergency situation where what a certain generation of doctors have been or is actually totally wrong. And now the science is emerging to refute that the patients have been very constant with their story. And I think that and teachers everywhere it needs to listen to that.
Speaker 1:
18:14
And how do you turn around your work? It sounds like a lot of your work is, is basically gathering the information. So learning about the impact of Emmy on family members, learning about the role of gps, learning about what's happening in medical schools. Once you've learned that, how do you pump outs? I don't know, conclusions, recommendations, findings to, to affect change.
Speaker 2:
18:38
Well that's exactly why we're doing the information gathering. We can't make suggestions without knowing what's going on already. And as soon as we start identifying where the biggest gaps are, then we can start to make suggestions this to help to fill them. We can write elearning modules, we can, um, even just put links to updated literature and research on to GP notebook guides for example. There are lots of practical ways in which we can start filling the gap in the knowledge.
Speaker 1:
19:15
It strikes me, this is an awful thing to say, but I feel grateful you got army. I mean it's, it sounds awful that it takes someone in the medical world to be struck down by this. So then have the wherewithal to, to change the world around them.
Speaker 2:
19:32
Um, the feeling is mutual. You are doing your, your role spreading the word. And I think, I think that's the key. Unless you've had it, you really don't have a clue as to how awful you can feel and how it's almost like having a concussion and you have no control over your energy levels. You can't even think straight at times. And it's only by people who've experienced it. Trying to educate people, spread the word, improve the general public awareness. Um, that's how we're going to get there. We all, we all, we're all playing a role and, and yes, it does help for me, accept my own illnesses. It's been horrendous. Um, but if I feel I can make a difference because of it, then it makes me less miserable,
Speaker 1:
20:33
all of us. That's lovely. It feels very perverse, but that is lovely. What, uh, what, what's your sense of where we're at now? I mean, I've, I've asked her a number of people on this podcast series, how hopeful are you that either understanding is improving or we're nearing that breakthrough as to what the hell this thing is? What, what's your feeling right now, Nina?
Speaker 2:
20:55
I'm really hopeful. Um, I may be wildly optimistic, but I can you, and we think that in the next two to five years we're going to get some really big breakthroughs as the understanding, possibly biomarkers and possibly treatments.
Speaker 1:
21:14
I like your optimism. I will hold you through that. I'll phone you up into years and see how we've got on Nina, listen, I really appreciate you spending the time with me today. Thanks for joining me on the show.
Speaker 2:
21:26
Oh, thank you so much. Scary. It's been an absolute pleasure and you know, be kind to yourself and tell all your listeners to be kind to themselves because it is a tough illness and horrendous for everyone involved, including their families. Um, but if we can improve awareness and let's carry on
Speaker 1:
21:48
that you are a plea for kindness from the inspiration or doctor Nina your head, and you'll find links to her work, including that video of one of her presentations that I mentioned in the show notes that come with this podcast. If you're listening in iTunes as ever, please rate and review. It really does make a difference. It helps boost our visibility and hopefully means more people will find this podcast and thank you to you. If you've been sharing links across social media and with your friends or networks, it all makes a difference for now. Thank you so much for listening.
Speaker 3:
22:30
Yeah.
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