Chronic Fatigue Syndrome: The largest... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Chronic Fatigue Syndrome

does-the-NHS-work profile image

The largest ever DNA study of ME/CFS is available to register online.

ME/CFS and FMS are similar in symptoms. Some people may suffer from both or all.

This study is interesting to us Fibromyalgia individuals as the study looks at fatigue a major symptom of Fibro, the trial, Yes a trial! is looking at DNA, I know there is a lot about DNA and diagnosis just now, for me it will be a medical breakthrough for us all. This is interesting reading even if you do not fit the brief.

Anyhow, this may be of interest to some.😐here is the link if you wish to participate you need to be suffering from Chronic Fatigue or ME.

decodeme.org.uk/the-science/

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does-the-NHS-work
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Hiya, it looks like this was written at the start of the study - was this a proposal? I see it was in 2020, so it would certainly be interesting to see the final study with findings. 🙂

does-the-NHS-work profile image
does-the-NHS-work in reply to PenelopeClearwater

Yes, that is true, I believe DecodeME community launch was in January 2022.

PenelopeClearwater profile image
PenelopeClearwater in reply to does-the-NHS-work

Fab - I’ll keep a lookout ☺️

does-the-NHS-work profile image
does-the-NHS-work in reply to PenelopeClearwater

Just to let you know the feed back on this study from sugarhobbit but maybe you can still be included in the trial, you can assess the link I posted earlier.

Sugarhobbit profile image
Sugarhobbit

I signed up for this when they first announced it a long time ago. I believe there has been a few delays with it a long the way and that they are making the questionnaire more user friendly. Not had anything to do with it directly but they said they would be Intouch when they need to be as they needed so many people to come forward who have chronic fatigue. I have both chronic fatigue/ME and fibromyalgia.

does-the-NHS-work profile image
does-the-NHS-work in reply to Sugarhobbit

Hi, thanks for your update on this project, can I ask if you have completed a questionnaire for the trial at any stage yet? I received information this week indicating to sign up, may be they still need more people to sign up?

Sugarhobbit profile image
Sugarhobbit in reply to does-the-NHS-work

No not received one at any stage yet. Think it was last week they wrote an email saying that once they get the questionnaire sorted they will be Intouch with people.

Sugarhobbit x

ok, thanks for the update, I too have signed up, waiting questionnaire, so fingers crossed.

Midori profile image
Midori

And there's something coming up about Long Covid, which is another similar one!

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