Nina Muirhead CMRC 2020
…reaching large numbers of practicing and training professionals and I will go into that a little bit more in my talk but I’ve already introduced myself that I’m a doctor educator but also an ME/CFS patient and following the last CMRC meeting I did have a bit of a crash for about two months and then was put on the oseltamivir, which is a Tamiflu, which gave me a significant increase in my energy and I was able to get about 30 hours a week instead of about eight hours a week.
So it was a massive difference and I’m now still working three days a week which is two full day’s work split across, I do Tuesday Wednesday and Friday, just so I can pace my energy through the week.
So I work as a dermatology surgeon. I cut out skin cancer but I’ve always been interested in education and research and I’m really pleased to be using my experiences in education and research and my contacts with the Royal Colleges to promote education in information on ME/CFS at a wider level.
So I’ve been attending conferences, meetings, charities , and last week I was at the All Nations Centre in Wales lecturing to 50 GPS on
the topic. It went down very well. In fact it was overbooked with a waiting list and now they want to book it for a hundred and fifty and run it again. So doctors do want to know more about this, it’s becoming interesting. It’s gone from the vague biopsychosocial model to a
really interesting scientific conundrum, and it’s actually starting to hook the interest of some of the doctors particularly those who have patients who they don’t know what to do with.
I couldn’t have done it all without the support of my parents who’ve been amazing throughout and in fact nursed me through my worst days and also my family who are also extremely supportive of my situation.
So second part; medical school research.
This is something I introduced at the last talk and I talked about the pilot
trial I was going to do and I’ve got the green light on doing a survey around the medical schools across the UK from the medical schools Council and we did. We worked together when we sent out a questionnaire to 34 medical schools up and down the UK, Northern Ireland Scotland and Wales. And we had a very good response rate compared to a study that was done in the US where they had around 50%.
We felt very pleased to get about 2/3 of the UK medical schools to
respond and of those total 22 respondents about half are teaching
ME/CFS but only three are spending more than two hours on the topic. And only 2 think that a student will meet a patient in their five to six years of studying at medical school and only five are asking exam questions on the topic. So there is still a long way to go and I think the medical schools council are very pleased that we identified this patient participation part of it because that’s something that’s going across the board. They’re even getting patients in to interview potential future doctors because they think that the patient voice is important.
The specialist teaching ME/CFS were quite varied.We had pediatricians ophthalmologists but also quite a lot of psychiatrists are still
teaching on this topic and unfortunately despite the fact that 22 medical schools got back to us, not a single one wanted to tell us what they’re actually teaching. Nobody shared any lecture notes, slides or handouts on the topic and from a previous freedom of information study,
one can only imagine that they’re teaching that it is functional medically
unexplained and very vague.
On a very positive note, the medical schools were really keen on seeing further resources to help them to teach this topic they don’t have in-house specialists or experts but they are willing to take on e-learning modules .
Videos were the most popular with 10 universities getting back to say they accept a video on this and the other thing that kept coming back time and time again is can we get some patients here to talk about their experience of the illness to our students. I also ran fou student projects and I’ve got one of my students here today. She’s speaking
this afternoon she’s got a poster, and I’ve got another person who supervised our student projects as well so Esme and Millie if you just give everyone a wave. So I’d like you to make sure to see
posters a1 and a5 because that’s part of the work that’s come out of the
research that I’ve been doing with medical students at medical schools in
the UK.
And what we asked the students was to do to design for themselves some
small-scale projects where they drew on the patient voice to make judgments about education, primary care, quality of life and care services.
In education: 38 patients got back to students with information about what they thought doctors should learn in primary care.
This was about what kind of care patients would like from their
GP and across the board patients wanted an early and accurate diagnosis.
In terms of quality of services; and that’s the presentation this
afternoon, we did a brand new study on the impact of the quality of life of
family members of those with ME, and we found that it is significantly
greater than any other disease or cancer.
So the tallest bar here shows that there’s a bigger impact on the quality
of life of your family member if you have ME.
And finally, a sort of an NHS outcomes waiting times for diagnosis.
Of 97 patients who responded to our questionnaire in Wales was 9 years on average which was shocking, and patients didn’t really feel very well supported once they did actually then see the care service about where to go next with their health.
So having drawn on all of that information there were quite a lot of learning points about how to involve patients and carers. To begin with we thought about workshops, but the patients weren’t too well to come. 60 patients actually stood forward and said we’d love to be interviewed on this but when it came to the six-week timeframe for the students to run their project, only 23 were well enough. Three patients actually did do semi-structured interviews by email because they found it easier to get someone to help them answer questions by email, and in general there are a lot of logistical issues. And we had to make sure that the patient information that we’d got ethics approval on was in different typefaces, and the opportunity to have it read over the phone.
So in summary the experience from the projects that I initiated
before the last meeting shows that patient involvement is key. It was really pleasing that the medical schools Council have got on board with us, and in fact one of the representatives came to the Forward ME meeting at the House of Lords.
Universities are keen on receiving videos and e-Learning.
We’ve already put forward an abstract for the Association of Medical Educators conference this summer assuming it goes ahead because of the coronavirus.
But this is all the top undergraduate Dean’s and policy makers and curriculum writers and they will be there and I’m hoping to put ME on their agenda. And then the plan is to engage more medical educators through initiatives like that and publish, obviously, our work.
So the medical education group; we have been meeting quarterly.
Our role is to enhance the understanding of ME within the health profession and educate healthcare practitioners and trainees.
Our focus is on communicating the latest ME/CFS biomedical research and the needs of ME/CFS and their carers. The accountability is obviously to the CMRC Executive Board, and membership is for us
to have a meeting to corrate, we have at least three of the following medical professional at least one member of the CMRC board a lay member a member of the patient Advisory Group and you’ve
already put your hands up but that’s when I was hoping to really get to
mention how much work you have been doing to support me in that and I really thank you for that and also a charity representative and Sam has been on pretty much all of those calls and Russell as well so that’s been fabulous to see.
So what are we chatting about in those meetings?
We try and keep it to two an hour and we also try and give
patients a break halfway through and I think that’s really helping.
Just remembering that we have ill people on the line and that everything we do has to be moderated to make sure, to consider the abilities of everyone there.
So we’ve been talking about our terms of reference who our stakeholders are and
how we might create better subgroups.
That might be nurses, physios, GPs and medical educators. We’ve supported the stand and we had 65 GPs sign up to show interest in ME/CFS at this EMR at the GP conference last summer and we will be following that up with further questionnaires and information collection. We’ve also been making contact with medical educators and I think this is where we really need to start engaging better with our colleagues in Canada, Australia and the States and learning collaboratively about what education is working. I would love to know more about how you’re teaching the CCC criteria to doctors and really actually putting our heads together. In a way the education has been quite stalled in the UK because of the NICE guidelines not coming out until December and what we really need to do is learn from your experience of releasing online training materials and perhaps tailor ours to a UK audience and a UK health care setting, but also tailor it to be ready for the new NICE guidelines.
And that brings us on to how we might roll out a 2021 National Health campaign.
So lots of ideas, lots of really positive meetings, lots of people coming together. I mean, in our last meeting we had someone from Scotland Northern Ireland, Wales. We’ve had educators we’ve had patients,we’ve had professionals, and I really do feel as though as a working group we are making progress.
The events that we’ve organised are across Buckinghamshire, Cardiff ,Bristol ,Cambridge and hopefully London. Again we’re just watching that’s based on the coronavirus.
Again last time, I keep coming back to the groundwork that I laid on the last occasion, anecdotally and from literature we knew that there is a problem with our doctors diagnosing this in patients. And we also know from a scientific basis there’s this gap in that ten minute consultation a patient can appear quite normal. This is what the doctor sees but over time patients get worse and worse at their cognitive ability, this is just all math questions but it can be anything really where they have to concentrate. And that gap is something that patient knows about but cannot always explain to their doctor.
So often getting to an appointment can involve multiple days of planning, weeks afterwards of resting, it can involve someone taking them, it can involve them feeling ill, before or afterwards but usually during the consultation the patient is so desperate to get their point across they can almost seem to be catastrophizing how they feel and if they come with a relative, the relative is often fussing them because they know how sick that patient is. But the doctor, seeing that small, tiny thing unfolding is looking at the relative and thinking ‘well you’re over reacting you’re creating this illness ideal’ and there is a major problem with just seeing a small snapshot of how well the patient is.
So along with some of the work that we did with the medical education group, and Dr Hang who is based up in near Wigan, and Rea Sonu, who is also in healthcare, we’ve devised an online pre-assessment form and Olivia is one of our students at Cambridge who’s also helped, and we’ve been asking doctors questions about what their current understanding is. And I also ran a little basic questionnaire to GP trainees and to practicing professionals in medicine.
What do you think about the condition? What are the diagnostic criteria? What investigations would you do?
It was actually to aid the teaching session that I was doing. Ideally when you teach you want to find out where the knowledge gaps are target them and then retest afterwards to see your teaching has been successful.
GP thoughts on ME; well they were quite vague. Not everybody agreed and there was a lot of sticking on this diagnosis of exclusion; you’ve got to get everything else excluded, you’ve got to test for this or that, and make sure you’re not missing cancer. And because they were so stuck on this diagnosis of exclusion, the problem then becomes once they’ve diagnosed it ,it must be exclusive because they assume that the patient has gone through all those other tests to make sure they don’t have anything else, and I think we need to come away from that in our teaching and go more towards some of the scientific research criteria for diagnosis. Some doctors think it’s functional, unpredictable. It tends to be the heart sink patient that they don’t really know what to do with. The GP answers to the online questions was even more interesting:
71% had no prior teaching on the topic.
Nearly forty percent think it’s psychological or psychosomatic.
We actually put this in the questionnaire psychological / psychosomatic to make sure we weren’t missing the details of where the doctors actually put the illness, and there is a bit of a difference.
So psychological problems can be anxiety and depression, where as psychosomatic and can be that your leg has fallen off and well you think your leg has fallen off, but it’s actually still there. Only 11 percent were either confident about diagnosing or confident about managing patients,
and nearly one in five doctors don’t think that any affects children.
Which actually goes quite well with the big data in that only 7% of children are diagnosed within their time frame because doctors aren’t looking for it in children
91.7 percent think that patients need to build up their strength from exercise
and a shocking 41.7% think that children with ME miss school because their parents support the sick role and that this should be discouraged, and potentially it’s their role to do to do that, which is really concerning.
So in teaching the topic, that the bit that we’re interested in teaching doctors is how to hone in on the orange bullseye there and from a personal point of view I find the IOM diagnostic criteria the easiest to teach because it’s got just the four main diagnostic criteria.
And so this is what I am using in my lectures to doctors and GPS including Natalie’s video and the link there along with post-exertional malaise and that’s the six minute version and I think it’s incredibly helpful for them to see that as part of a teaching package and backed up by an actual tutor teaching them and/or delivery of the information in a very easy understandable way.
When I asked the pre questionnaire, the very basic one that I designed, I expected roughly half of doctors to know at least some of those criteria but in fact of a total of 32 around 10% we’re getting some sort of answer on mentioning these diagnostic criteria. There were a lot of not sures, or oh I think it’s it exclusive, exclusion or there’s some pain, or very vague.
Doctors really don’t have a grasp of the diagnostic criteria and they’re also very centered around the main treatments of CBT and GE T and if these aren’t going to be in the future. guidelines this leaves a big void of understanding and where we’re going to go with what to tell doctors to tell patients what they need to be doing.
So the relevance of what I’ve been doing to biomedical research and recruitment is summarized on this slide.
Many researchers appeal to clinicians to help recruit patients across the board and in general medical problems and diagnostic rates are usually much higher in other illnesses and diseases compared to ME/CFS.
So we are in this unique position in that we’re trying to research an illness that doctors can’t diagnose.
Anecdotally patients are better than clinicians at recognizing ME/CFS. And actually from the information that I’ve gathered , self diagnose patients who meet the criteria either CCC or IOM may be actually a more accurate research group than those diagnosed by their GP.
And for clinician involvement in recruitment into research to be of use, there would need to be a large-scale re-education of professionals on ME/CFS, and/or someone at the end of a telemedicine who is a specialist who can sort out whether someone has been misdiagnosed or not.
Patient priorities for education:
To remove the psychological and psychosomatic models.
They want to know more about the immune, neurologic, endocrine, genetic and metabolic explanations.
Danger of the current treatment guidelines and/or the importance of pacing is something that patients really want doctors to know about.
Fatigue is a real under estimate of how crippling the absolute exhaustion really does feel. You can barely digest your food, you can’t even communicate. Fatigue doesn’t even touch upon how bad it really is for patients, and patients really want to get that message across too.
There is an increased risk of suicide because it’s such a big, miserable illness to live with, and impact on personal and carers and family members quality of life is also important to communicate.
GPS want answers quick they’ve got ten minute consultations. They want to know what the latest evidence is on beta-blockers because so many of them are tachycardic when they walk in. They want to know about steroids because of the neuro inflammation. Mindfulness, they just want practical answers as to what can help them get through that ten minutes with the patient and until we have the infrastructure and specialists to support them we’re going to have to come up with some frameworks to help.
So in summary the challenge is that practicing professionals are not up-to-date with the new biomechanical narrative and there is a certain amount of unpicking to do of the poor knowledge.
So a lot of doctors are actually saying well isn’t it a combination of depression and so they’re actually picking up quite a lot of depressed people and saying it’s ME, or they’re telling people with ME they’re depressed. And there’s a lot of that going on and it makes for a very poor research sample.
Students and allied professionals also need educating and that has implications for recruitment to biomedical research and I think we’re doing a good job. We’ve gone a long way in 18 months and I have a lot to thank my PAG team and the rest of the medical education group for that, but I think we could be better.
We need to communicate our teaching events more widely. We need to get nurses on the group and all communicating with the Medical Education Group. The PAG is excellent at communicating with a medical education group but we need to get across communication with all the other groups and also with international colleagues. This morning over breakfast it was this is the time for ME. In the post coronavirus world as we all recover I think that we should be looking at how we can really solve this as our next big challenge so thank you to everyone.
