Open UK: Be Part of Research registry

A National Institute of Health Research and NHS project, if you are interested in taking part in research you can sign up, give some personal details and indicate the conditions that you have and are interested in taking part of research into. You will then be notified of studies that match your criteria.

https://bepartofresearch.nihr.ac.uk/

 

This is only open to UK residents.

I started the registration process out of curiosity, though have reservations about actually registering. It would not let me get beyond the first page asking for my name and email address without entering those fields, so I still have no idea what the process would be like or what information they are requesting. (Will see if I can establish this by other means.)

Though in theory I think this is a good idea, I could only participate now in research that came to me and require minimal exertion. Further I would only now participate in research I felt stood a chance of producing meaningful results such as DecodeME, with researchers I felt I could trust, so would probably rather only respond to studies I become aware of myself rather than putting myself up for all and sundry to contact me.

Early on in the course of my ME (in the last century) I participated in all and any research that crossed my path, but none seemed to produce any useful results. The biggest was FINE but the results of this ended up being swept under the carpet because they did not support the researchers’ preconceptions. Despite the negative findings indicating a probability that the BPS approach of talk therapy plus exercise does not work, this was not adequately addressed by the researchers.

 

Their list of conditions does not seem to include ME/CFS, and their search mechanism seems to recognise CFS and CFS/ME specifically but not ME/CFS. They do seem to include studies based across the world despite only registering UK residents as potential subjects.

The two studies relevant to us that I found on their database were:

• Pacing with a heart rate monitor for people with myalgic encephalomyelitis (ME) and long COVID, see https://bepartofresearch.nihr.ac.uk/trial-details/trial-detail?trialId=34826&location=&distance= , which I assume is the Physios4ME study
• Reducing fatigue in Long COVID-19: A feasibility study of a self-help intervention to reduce fatigue-related symptoms among patients in general practice, see https://bepartofresearch.nihr.ac.uk/trial-details/trial-detail?trialId=34310&location=&distance= , which is a Salford (Manchester) based study

(@Andy I didn’t manage to find DecodeME in their database, if it is not already submitted, would it be worth including the study there?)

 

Their search function and account functions seem to operate using differing terms. I created an account and have signed up for updates about studies for "Chronic Fatigue Syndrome (ME/CFS)" and "Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS)". I was able to find those options in the account section starting my search with "ME/", but as Peter has found out, with their standard search function they only have "Chronic Fatigue Syndrome (CFS/ME)" or "Myalgic Encephalomyelitis (ME)".

I found out about this as the team are applying for DecodeME to be listed.