If anyone is interested this UK large-scale study is still recruiting and needs people to provide their DNA for the genetic analysis.
I was initially rejected as hypothyroidism was an exclusionary condition, but they got back in touch a few weeks ago and said they've been able to widen the parameters. And sent me a saliva kit.
This morning I got a newsletter saying they are at 75% of the amount of volunteers needed. It is a massive study and has probably been mentioned here but with them asking for more recruits I thought I'd post it here. I hope that's ok.
They are talking about ME and this study on Radio 2 Tina Daheley (standing in for Jeremy Vine) today 24/8 13.10pm for about half an hour.... I've not listened yet but caught the end mentioning this study
Ooooh thanks for the link - it looks like a really good study!
For me, I noted the following straight away:
Chronic fatigue syndrome has been described as an “allostatic overload condition” (38), where the physiological mechanisms employed to deal with stress (also named “allostatic states”) contribute to the perpetuation of the disorder.
Stress. Overload. My CFS, such as it is, came as the result of a long period of extreme traumatic stress. Never been the same since. I reckon all my axes are tipped, gut-brain, HPA the lot of them. Silly sods are taking in their own feedback and seem incapable of realising I'm out of danger now!
When my brain has stopped fizzing I will read more. I did not have any physical illness prior to fatigue setting in.
I haven't formally been labelled with it... or maybe I have and I just don't know... just an off hand comment from my Endo... along with long covid (I haven't even had short covid ...yet!)
Thanks, I guess I’m overthinking again. If there’s no definitive test for it I wish they’d just do a study of fatigue. But guess they might be overwhelmed …..
I’m talking about the potential for sharing personal information inappropriately. You said that yours is on record anyway. Most people’s DNA is not on record.
That’s always concerned me. As you say, it’s a matter of choice. Some data we have to entrust to other agencies. I don’t really think I want to offer up data which I’ve no need to share.
The grant has been awarded to Prof Chris Ponting (Principal Investigator) at the University of Edinburgh and he is ultimately responsible for successfully delivering the project.
"We don’t do research for commercial gain – it’s all to benefit society. This could include collaborations with researchers working in other countries or with commercial companies who want to create new treatments or lab tests."
I think in this day and age every thing we do can be seen. Phone use. Card use. Where you drive (ANPR). We are all being watched 🤷♀️. Sorry but it’s true.
If my DNA sample helps people 10 yrs from now then I’m happy to give it.
I'm with you... probably only an issue if looking for life insurance... which I'm not... anyway you insure other people before bumping them off don't you?? Isn't that the point of it 😁
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Patient info post on thyroid disorder 
Want to know why doctors aren’t referring patients?
Would anybody be able to help me with my results? Still feel awful
The connection between Lyme Disease and thyroid illness
