UK CFS/M.E. Research Collaborative [CMRC] conference, 10th and 11th March 2020

Invisible Woman · Mar 12, 2020

I struggle with watching video clips, but.managed Chris Ponting's on GWAS - very interesting.

I also watched Sam Bromiley's. It made me a bit twitchy. AfME highlight the lack of access to specialist services. Given the offerings available, especially the lack of guarantee whether you'll get one of the better ones that just pay lip service to NICE guidelines or the standard kind, sometimes nothing is better than a bad service.

He talks about the survey and the outcomes from CBT and GET, bad for those implemented by ME specialists and worse for therapist who are not ME specialists. This is hardly news to anyone including AfME as this isn't the first survey they've done.

No direct connection made between the damage caused by CBT & GET and the fact it's the specialist services who cause the harm and then don't bother to gather that information in the first place.

He also comments the charity now also represents young people with ME and discusses the time taken from.symptoms appearing to diagnosis. According to guidelines these should just take a few months. I can't remember the exact time 4 or 5. He refers to the same timeframe as recommended for adults. I thought it needed to be at least 6 months, but maybe I'm out of date.

A brief mention of pacing but not *ahem* "pacing up".

dreampop · Mar 13, 2020

That was an interesting slide in, can't find it now, that showed a woman tripled her active hours on tamiflu. That's intriguing, although probably an outlier.

Cinders66 · Mar 13, 2020

dreampop said: ↑

That was an interesting slide in, can't find it now, that showed a woman tripled her active hours on tamiflu. That's intriguing, although probably an outlier.
Click to expand...

Nina muirhead said it really helped her too I think

Andy · Mar 13, 2020

Great Twitter thread from @Michiel Tack based on Nina Muirhead's presentation.
Code:
https://twitter.com/MTackCVS/status/1238211656955691010
https://twitter.com/user/status/1238211656955691010

https://twitter.com/user/status/1238211731719143427

https://twitter.com/user/status/1238211758663311363

https://twitter.com/user/status/1238212087811276804

Sly Saint · Mar 13, 2020

I've done a transcript of Nina Muirheads talk

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.
Click to expand...

Hoopoe · Mar 13, 2020

Two problems with the viral infection are that trials of antiviral medication showed no benefit and that it's difficult to demonstrate an infection. Prusty said a few interesting things that make hypotheses of viral infection more credible and sort of fit with the evidence.

First is the idea that only very few cells might be infected, but sending out signals that trigger the cell danger response in all other cells. That could be the "something in the blood" and might explain why it is difficult to demonstrate an infection. It could also be that these infections are limited to small areas of tissue that is difficult to access.

Second is the idea that the antiviral drugs work by interfering with viral replication, which is not necessarily taking place or only taking place in an incomplete manner.

That's how I understood it anyway.

Andy · Mar 13, 2020

I think that Nina is going to be fantastically valuable to the education efforts, I've always been really impressed whenever I've had the chance to meet her, or as in this case, see her talk.

Dolphin · Mar 13, 2020

Sly Saint said: ↑

I've done a transcript of Nina Muirheads talk
Click to expand...

this is just all math questions but it can be anything really where they have to concentrate.
Click to expand...

I’d guess this says “this is not just”?

Hoopoe · Mar 13, 2020

Interesting that Nina Muirhead thinks that the perception of ME/CFS as highly exclusionary diagnosis is problematic.

I would agree.

She also thinks the IOM criteria are the best to teach doctors about the illness.

Hoopoe · Mar 13, 2020

She thinks doctors are so bad at recognizing ME/CFS that self diagnosed patients meeting IOM or CCC criteria might be a better group to recruit from (for studies).

Andy · Mar 13, 2020

strategist said: ↑

She thinks doctors are so bad at recognizing ME/CFS that that self diagnosed patients meeting IOM or CCC criteria might be a better group to recruit from (for studies).
Click to expand...

Yes, I took note of that as well. Suggests that the 20k cohort for the GWAS will definitely be valuable for future research.

OverTheHills · Mar 13, 2020

Sly Saint said: ↑

I've done a transcript of Nina Muirheads talk
Click to expand...

Major thanks for doing that transcript @Sly Saint, I know I'm not the only one who can't really handle videos, I find written material much easier.
And that talk had some really good stuff in it - from the true facts about what doctors believe (wrong) and know (nothing),and her astute observation about patients being more use to researchers than GPs at the moment. Cheering.

Sly Saint · Mar 15, 2020

Does anyone have contact with Nina Muirhead?
If she wants to get more of an idea as to what is being 'taught' she could have a listen to Chalders tripe.

there was this podcast:
https://www.s4me.info/threads/podca...syndrome-dr-lucy-maddox-trudie-chalder.12394/

her lecture about her career
https://www.s4me.info/threads/13-march-2019-chalder-‘medically-unexplained-symptoms’-my-clinical-and-research-journey-over-30-years.5576/page-3#post-152193

another interview:
Exercise and chronic fatigue syndrome: an interview with Professor Trudie Chalder
(she 'explains' about the PACE trial ):

Recently, there was a new analysis of data from the PACE trial. Why was this analysis conducted and what did it involve?
In our recent research we were interested to find out how treatment worked. We had already shown that CBT and GET when added to specialist medical care (SMC) worked better than adaptive pacing therapy (APT) added to SMC and SMC alone.

The main finding in the new study was that CBT and GET worked by reducing people’s fear of engaging in activity. In GET tolerance of walking was also important for bringing about improvements in fatigue and physical functioning.

What are fear avoidance beliefs and what impact did you find they had on the overall effect of cognitive behaviour therapy (CBT) and graded exercise therapy (GET) on outcomes?
An example of a fear avoidance belief is “I am afraid that I will make my symptoms worse if I exercise”.

Up to 60 percent of the treatment effect was explained by change in these beliefs.

How did this compare to the other mediating factors that were analysed?
Fear avoidance beliefs was the strongest mediator but we found change in other beliefs and behaviours also mediated the treatment effect but to a lesser extent.

Were you surprised by your results and what impact do you hope they will have?
We were not surprised by our findings as patients often describe in great detail their understandable concerns about engaging in activity.
Click to expand...

https://www.news-medical.net/news/2...-interview-with-Professor-Trudie-Chalder.aspx

eta:
I also hope that somehow she can get the NHS to stop recommending Chalders books.

adambeyoncelowe · Mar 14, 2020

Sly Saint said: ↑

Does anyone have contact with Nina Muirhead?
If she wants to get more of an idea as to what is being 'taught' she could have a listen to Chalders tripe.

there was this podcast:
https://www.s4me.info/threads/podca...syndrome-dr-lucy-maddox-trudie-chalder.12394/

her lecture about her career
https://www.s4me.info/threads/13-march-2019-chalder-‘medically-unexplained-symptoms’-my-clinical-and-research-journey-over-30-years.5576/page-3#post-152193

another interview:
Exercise and chronic fatigue syndrome: an interview with Professor Trudie Chalder
(she 'explains' about the PACE trial ):

https://www.news-medical.net/news/2...-interview-with-Professor-Trudie-Chalder.aspx
Click to expand...

I'm pretty sure she will be aware. Nina is very thorough.

Kitty · Mar 15, 2020

adambeyoncelowe said: ↑

I'm pretty sure she will be aware. Nina is very thorough.
Click to expand...

It'd be so useful to find out what is being taught in medical schools on ME. Not to put the information into the public domain, of course – simply to let Nina know, so that she can factor it into her own education materials. She can probably guess to a large extent what approaches are being taken, but there may be aspects (both positive and negative) that are more of a surprise.

Adrian · Mar 15, 2020

Kitty said: ↑

It'd be so useful to find out what is being taught in medical schools on ME. Not to put the information into the public domain, of course – simply to let Nina know, so that she can factor it into her own education materials. She can probably guess to a large extent what approaches are being taken, but there may be aspects (both positive and negative) that are more of a surprise.
Click to expand...

I think Nina has done some type of survey of what is talked and asked for materials but didn't get much back from that. If I remember correctly she talks about this in her CMRC talk.

https://www.youtube.com/watch?v=NjFKLFr8hqw

Cinders66 · Mar 15, 2020

I think that nina muirhead indicated or suggested at the CMRC that of the people teaching on CFS At the universities that taught anything at all, a lot or most even , i cannot remember, were psychiatrists. Which I assume indicates a largely behavioural model from them at least.

this is one of reasons why I have objected to the mrc “ you get the progress alone” , position Because we clearly are medically in a completely different situation to an in someways similar illness like MS, in both regards to medial respect, education and infrastructure and interest and also private fundraising capabilities. To pretend we aren’t uniquely disadvantaged compared with established chronic illness, watching the NM presentations, is to me ridiculous, the “crime” has been to not get enough help to overcome the disadvantages. Although you could argue that the education aspect should have been addressed more before , i don’t know.

Andy · Mar 15, 2020

Just watching Karl Morten's presentation at the moment and the point about the Polish cohort being Fukuda and the Biobank being CCC is somewhat more nuanced than just a straight comparison between the two criteria on paper.

Karl Morten said:

So nobody knows that they've got ME in Poland. So they did a pre-screen, fifteen hundred people phoned up and we're interested in the study, they did a Fukuda assessment initially, they then came in and had a full clinical assessment, so they were asked about PEM, they had a psych, a psychiatrist, a neurologist, internal medicine, a CPET test, three or four hours of real clinical assessment and then people were excluded from the study, so the depressed patients weren't included, the neurology ones, anyone with an underlying, so we've got quite a defined cohort
Click to expand...

Sly Saint · Mar 15, 2020

Cinders66 said: ↑

I think that nina muirhead indicated or suggested at the CMRC that of the people teaching on CFS At the universities that taught anything at all, a lot or most even , i cannot remember, were psychiatrists. Which I assume indicates a largely behavioural model from them at least.
Click to expand...

see my transcript a few posts above:

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.
Click to expand...

Cinders66 · Mar 15, 2020

Sly Saint said: ↑

see my transcript a few posts above:
Click to expand...

Thankyou. A transcript is very useful.

In not particularly reassured by opthalmologists - eye specialist - teaching it either

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UK CFS/M.E. Research Collaborative [CMRC] conference, 10th and 11th March 2020

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