Medical Matters > Medical Research: Volunteering

ME Essential Summer 2021

Question

I have a diagnosis of ME/CFS. I have it mildly compared to most (although it still significantly impacts my life) and no other physical or mental health problems. I would really like to get involved in research into the physiology of ME/CFS. In my experience it’s all to do with the reaction of my muscles. How do I go about this please?

Answer

The ME Association Ramsay Research Fund has provided grants to a number of research studies that have examined muscle and mitochondrial involvement at the Universities of Oxford (Dr Karl Morten’s group) and Newcastle (Professor Julia Newton’s group). However, neither research groups are recruiting research volunteers at the moment. On the subject of muscle involvement and defective production of energy, I have a special interest here having used my own skeletal muscle nearly 40 years ago to carry out research into the way our mitochondria (which are the equivalent of batteries within cells) are not functioning properly in creating energy in ME/CFS.

We hope that with renewed funding now in place, the ME/CFS Biobank will be able to collect more blood samples and clinical data from volunteers later in 2022. At present the only research that requires volunteers is the DecodeME study where we need 20,000 people with ME/CFS to sign-up and donate a sample of saliva (which is sent by post) and complete clinical questionnaires. Samples will be used to analyse DNA and find out how genes are behaving in people with ME/CFS. Genetic analysis will take place at the University of Edinburgh. This research has received £3.2 million funding from the Medical Research Council and it will shortly begin the formal recruitment process.

If you keep a regular watch on the ME Association website, and on ME Association Facebook, we will let people know when volunteers are being sought for new research into ME/CFS.

More information

MEDICAL DISCLAIMER

Medical Matters is for information purposes only. The answers provided by Dr Shepherd and the ME Association’s other expert advisers should not be construed as medical advice. We recommend that any information you deem relevant is discussed with your GP as soon as possible. It is important to obtain advice from a GP who is in charge of your clinical care, who knows you well, and who can consider other likely causes for symptoms. Seek personalised medical advice whenever a new symptom arises, or an existing symptom worsens. Don't assume that new or worsened symptoms are a result of having ME/CFS.

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