Decode ME study still looking for participants

[Sneedle]

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.

decodeme.org.uk/inviting-mo...

I have edited this to include the participation criteria:

- You have a diagnosis of ME/CFS from a healthcare professional

- You are aged 16 or over

- You live in the UK

And there seem to be some preliminary results based on the questionnaire only, to look at:

openresearch.nihr.ac.uk/art....

🌺

[TiggerMe Ambassador]

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

[TiggerMe Ambassador in reply to TiggerMe]

Done!

[TiggerMe Ambassador in reply to TiggerMe]

Accepted.... Spit Kit is on it's way!

[Sneedle in reply to TiggerMe]

Hurrah! Speedy Donkey you are

[tattybogle in reply to TiggerMe]

i just did it , they don't want my spit ... very Scarecrow-ist of them , especially since they apparently accept donkeys.

Harumph .... (Scarecrow going off to sulk in field) .

[TiggerMe Ambassador in reply to tattybogle]

Fear of bird dropping contamination? 🐦🤣

[TiggerMe Ambassador]

Could be really useful if a lot of Hypo's joined the study

[DippyDame]

Good post Sneedle

I was initially rejected for the same reason....

I've now sent off my saliva sample

Hopefully they might find a genetic link to hypothyroidism....if enough people with hypothyroidism participate!

Have you read this paper

frontiersin.org/articles/10...

[SarahJane1471 in reply to DippyDame]

Oh that’s the research I was trying to link to on another post this morning!

 JoJoloveschocolate

Otto11

[Sneedle in reply to DippyDame]

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'm so glad they've included us hypo people.

[Hedgeree]

Hi Sneedle,

Is this only for those with a diagnosis of ME? I briefly checked but can you confirm?

[TiggerMe Ambassador in reply to Hedgeree]

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!)

[Sneedle]

It says these are the criteria:

You have a diagnosis of ME/CFS from a healthcare professional

You are aged 16 or over

You live in the UK

Doesn't mention fibromyalgia which is weird.

[Hedgeree in reply to Sneedle]

Ok thanks for confirming; I don't fit the criteria as no diagnosis of ME or CF.

[mrskiki in reply to Hedgeree]

Same position, I’m continually shattered and sleepy and ache, so got quite interested in this - for the time it took for me to read this far ☹️

[TiggerMe Ambassador in reply to mrskiki]

Go ahead fill it in... 🤗

[mrskiki in reply to TiggerMe]

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 …..

[TiggerMe Ambassador in reply to mrskiki]

Isn't this why they term it as a 'syndrome' as it's obviously all in our heads 😠... it's predominantly a silly girlie thing isn't it?

[TiggerMe Ambassador in reply to Hedgeree]

When you fill it in it doesn't ask for confirmation of a diagnosis... must admit I didn't bother reading all the gumph far too many words 😁

[SarahJane1471]

Yes they have taken my DNA. I did tell them I am hypo but they still wanted it ……. I must be special 🤷‍♀️

[Sneedle in reply to SarahJane1471]

😀😀👍

[Hidden in reply to SarahJane1471]

This might sound a bit silly but do you have any concerns about how your DNA will/can be used?

[SarahJane1471 in reply to Hidden]

No🤷‍♀️I’m a retired police officer so my DNA is on record anyway. Unless I commit a crime I’m safe 🙏

[Hidden in reply to SarahJane1471]

Glad to hear that. 😉. That won’t be the case for others in this study though

[SarahJane1471 in reply to Hidden]

What do you mean?

[Hidden in reply to SarahJane1471]

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.

[SarahJane1471 in reply to Hidden]

True. It’s a matter of choice. Your NHS records are not necessarily secure. Data is shared all the time without our knowledge 🤷‍♀️

[Hidden in reply to SarahJane1471]

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.

[SarahJane1471 in reply to Hidden]

👍

[TiggerMe Ambassador in reply to Hidden]

I'm thinking my NHS records are likely the least secure... but once anything is computerised you really have no idea do you 🤷‍♀️

[Marz]

Do they guarantee your info is not shared ? Data is currency these days 😔

[DippyDame in reply to Marz]

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.

Privacy...

decodeme.org.uk/privacy-not...

"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."

[Sneedle]

You would need to look at the site. I believe data is anonymised. I went for it anyway, but agree it is important to know!

[SarahJane1471]

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.

Personal choice I suppose

[Hidden in reply to SarahJane1471]

Yes. Big Brother is certainly here.

[TiggerMe Ambassador in reply to SarahJane1471]

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 😁

[SarahJane1471]

Even this site can be monitored 🙈

[Hidden in reply to SarahJane1471]

Yep. Browsers are our biggest enemies and every internet site we access. My husband is really fussy about cookies.

[SarahJane1471 in reply to Hidden]

I don’t understand cookies. I just accept them 🤷‍♀️should I not?

[Hidden in reply to SarahJane1471]

Noooo. It’s a hanging offence in our house. Can’t say I really understand cookies - except the ones with chocolate chips and I always accept those 🤣

[SarahJane1471 in reply to Hidden]

🤣