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CFS/ME- DecodeME study closing soon

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Margiknot Thu 12-Oct-23 15:02:54

Just letting people know that the closing date for volunteering to participate in the DecodeME study is very soon (15/11/23). It is for people with a diagnosis of ME or CFS ( and long covid that is also diagnosed as ME or CFS) in the UK and involves filling in an online questionnaire followed by giving a spit sample ( via postal kit) for dna analysis) . They are trying to recruit 25000 participants but are still a bit short. I think it’s in collaboration with the University of Edinburgh with MRC and NISR funding. Here is the webpage for those interested or with family that may be interested. WWW.DecodeME.org.uk
It was a gransnet member who brought my attention to this study some months ago- so thanks!

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choughdancer Thu 12-Oct-23 18:28:56

I did the questionnaire several months ago, but was never contacted to give a spit sample, so I assumed they had enough people. I was keen to take part as I have ME/CFS and my daughter has Long Covid. I'm mystified!

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Margiknot Fri 13-Oct-23 09:32:37

Chough it might be worth contacting them in case something went wrong. They have a set of criteria for acceptance so it’s possible your data did not fit. I got an email to acknowledge my questionnaire had arrived and then later ( quite a few weeks later as the spit kits are sent out in batches) to tell me the kit was on its way. Hearing nothing is rather odd.
I hope the study helps to bring answers and effective treatment for many.

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Sparklefizz Fri 13-Oct-23 10:25:39

I'd like to do it but I understood from previous posts on an M.E. Group that if a person had other conditions as well as M.E., they were not eligible. I do have a number of other conditions. Is this correct?

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choughdancer Fri 13-Oct-23 14:05:15

You are right! I tried again with another email, did the questionnaire and this time got an email straight away to tell me I wasn't suitable. I have type 1 diabetes and clinical depression, both of which make me unsuitable.

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