Earlier this month I was invited to attend the joint patient & researcher session at the UK CFS/ME Research Collaborative (CMRC) conference.
This conference sounded really interesting, I was invited to attend for free and it was literally on my door step so it was a bit of a no brainer.
To be honest I had no idea what to expect especially as I know very little about medical research in general, but I thought what the hell what do I have to loose and planned to go with an open mind (like I do with most things).
On the day however I felt a bit tired but mainly in a can’t be bothered mood and was umming and ahhing whether or not to go, and a friend of mine with Fibromyalgia ended up calling for a chat. I explained to him my toss up between having an afternoon of lying on the sofa and watching Scrubs re-runs or going to the conference.
Well he basically told me what a fantastic opportunity it was and how I would be silly not to go, and that he would kill to go to something like it.
So off I trotted and I am so glad I did.
Background to CMRC
Before I was invited to the conference I had never even heard of the CMRC, so before had a did a little research and found that:
The CMRC was launched in April 2013. To enable researchers, major funders, M.E. charities and some patients to work together, the aim being:
- to provide a mechanism for M.E. charities, researchers and clinicians to work together in a coordinated and collaborative way
- increase awareness of M.E. within the research community
- highlight priorities for research funding to assist funders such as the Medical Research Council
- increase funding for M.E. research.
The Conference
The conference was a two day affair however none researchers etc were invited to one particular part which was called:
‘Working together for more and better research that benefits people with CFS/ME’
Where the objectives for the session were described as: 
What is Research?
After an array of introductions the session began by going into what research actually is. What I was unaware of is that there was no one definition of what it medical research actually is, we went through a couple different definitions and these were a couple of my favorites:
Research is the attempt to derive new knowledge, including studies that aim to generate hypotheses, as well as studies that aim to test them.
Health Research Agency 2014
Cause – Understanding disease process, help in diagnosis, treatment and prevention
Cure- Better treatments that could delay, cure or prevent disease
Care- Best quality care to promote quality of life
Alzheimer’s Society 2014
There are load of different types of research from: observational, direct contact, blind studies & double blind studies. But also original research, the repeating of studies, as well as a review of research that is already out there,
Research in the UK is funded by a variety of sources including:
- UK National Institute Health Research (NIHR)
- Medical Research Council
- Various other public bodies
- Research Charities
- Pharmaceutical industry
- Crowd Sourcing Initiatives
How can sufferers and the public help contribute to research?
Due to our a wealth of experience in living with the condition, impact of side effects and practical issues such as cost and availability of treatments including us in research is crital.
Sufferers can help research in a variety of ways:
- Active Partners – by getting involved in research planning, process and contributing ideas
- Participate – in the research studies themselves
- Advocate/ Lobby – Such as the ‘It’s OK to Ask’ about medical research campaign. (Link)
Discussions
We were arranged in groups of around 10-12 each group, the first exercise of the afternoon was to discuss our views on the research process within the context of CFS/ME, using the ‘Research Cycle Diagram'(see diagram below) as focus point.
Our group contained a mixture of people, from long term suffers, relatively newly diagnosed like myself, carers, researchers and a one of the producers of Canary in a Coal Mine, a feature documentary currently being produced about ME/CFS (Link).
So what did we as a bunch of people have to say about the research process? Well it was a mixed bag to be honest from people like me who had until this moment not even thought about the process, to those who were missing the point a little and talking about ideas they had for research, but we finally got there and our responses really fitted into one of two categories:
1. Areas of focus we would like to see research done in
- Prevention of CFS/ME
- Formation of different CFS/ME sub types
- Finding the part of the brain causes fatigue
- Why pregnancy often causes symptoms to cease?
- Complementary therapy
- Interdisciplinary research linking different aspects of the disease
- Sleep research
- Care of sufferes
- Matrix of symptoms to be created
2. Opinions on the research process/cycle
- Making info available to public in a way they can understand.
- Finding ways for sever sufferers to participate
- Clear information on how to get involved with research.
- Expert patients- patients should be involved with the process from start to finish
- Disseminating results and studies to GPs and patients and public
- Integrated approach
- How to identify priorities
- How we assess quality of research- sign posting how to access
- Problem with perception of CFS/ME as it currently has a low priority status.
- Corporation to do economic research independently.
The various different tables then discussed a specific issue, I was part of the group that discussed: Research priorities- how do you turn priorities into studies and get them funded. Which is discussed in part 2 (Link- Coming soon)
Gluten Free Adventures & M.E 
I am very grateful to you for both attending this conference session and compiling this with thorough account was what was discussed and agreed.
What sticks out to me, as an older long term patient is firstly the list of research priorities. It appears to be written in language that an average PWME would not use (in some cases), it doesn’t include any treatments (we need clinical trials of ME treatments in the UK) and it makes some strange assumptions (like fatigue comes from the brain).
I am disappointed that an opportunity to have a frank, honest discussion about UK research, the options and the barriers seems to have been lost. The priorities to me seem either too specific, too woolly and the lack of specific treatments as a research priority is a major problem for me.
As you may be aware the charity IiME are raising funds for a treatment trial using the drug rituximab. This is just one of the drugs being used worldwide in a research setting to treat CFS. There are other drugs being used, particularly in the USA, by doctors to treat the disease. We have no access to these drugs in the UK. Why was this not a top priority of the research list?
Why was then no mention of exercising testing (as per the Pacific Group), good day/bad day testing, immune system after exercise (as per the Lights) or any of the other quality research projects being carried out in the USA and needing replication here?
My assumption is that someone steered the patient group at least to end up with this end result. The other factors could be
1. That patients were exhausted by the previous lectures before they go to this part. I don’t know if I could have sat through this and managed to get a thought together after that.
2. That the patients selected for the session were research novices and didn’t know what other worldwide research existed. Therefore they didn’t know what to choose as priorities
3. That the researchers at the session determined some of the points
4. That the facilitator wrote the list and steered the patients (as one tried to do to a group I was in at a previous consultation exercise)
Would you be able to shed some more light on this or comment further please?