Closed UK: DecodeME updates, was recruitment thread.

Thanks Andy, I have printed a few.

 

[EDIT - oops just read your post and realised you mean getting Doctors/GPs to encourage participation in DecodeME - perhaps via Doctors for ME, social media --- I've left the rest of the post in case it is of some use]

Yes directly asking e.g. those you are in contact with via social media would get a much higher % uptake than relatively remote contact --- poster in a GPs/Doctors surgery.

Jonathan pointed out responses, to the great NICE guideline debacle, i.e. from junior Doctors, who were entirely dismissive of the medical establishment's view, and that the establishment's view was based on a few individuals with vested interests.
So, I wouldn't rule out GPs at least being prepared to allow fliers, poster --re DecodeME in their waiting room.

 

Not really this either! I mean, if you're a doctor, asking your ME patients face to face or down the phone in a consultation.

 

Not sure --- if you've a good relationship with your GP then yes seems a reasonable idea. Seems to be one folks would have to decide for themselves i.e. based on their own relationship with their Doctor but yes --- anything that generates more people for the study and they'd be "vetted" - Doctor considers they have ME/CFS.

 

I seem to have totally failed to express my idea!

What I mean is, that DecodeME could ask doctors to directly approach those particular patients who have ME and tell them about DecodeME and suggest that they might want to take part.

What I'm wondering is whether that kind of strategy is feasible or has ever been used.

 

I think it does happen, but perhaps more usually via hospital specialists. They know what trials are going on in their own field and will sometimes discuss them with patients they think might be eligible.

The trouble with ME is that people often don't even consult GPs about it unless they've no alternative, never mind have access to a specialist.

But it should be listed on patients' summary records, and there's no reason GPs couldn't be asked to mention it to diagnosed patients who request a consultation. How you'd go about that is something I don't know, though...

 

Me - not you & continuing the theme --

Need access to whatever "notice board" Doctors use - comments from others re whether they would do that for ME/CFS
Seems like a really good idea if you could pull it off ----
Seems reasonable to ask DecodeME to consider it.

 

Brief TV segment on the Scottish MillionsMissing protest which includes coverage of DecodeME.

 

I think that the TV woman mistook the word 'causal' for 'casual' at 0.19!

If only it were just 'casual'!

 

That's looking really good.

 

Decode ME posters will be on display tomorrow at the Northern Ireland NHS confederation. About 600 NHS delegates attend. Hope4ME has an information table.

 

Fantastic, thank you so much!

 

Is this the sort of avenue that DecodeME could pursue more generally?

Is Chris Ponting presenting on DecodeME at any conferences?

 

With enough resources and assuming it doesn't raise any ethical issues, yes, of course.

Not that I'm aware of.

 

I remember reading earlier that the plan was to try to get samples from people in the UK but if this doesn't work to expand to a larger geographical area. Is this still the plan or is DecodeME now pretty confident that there will be enough UK participants?

Asking as I'd love to send a bit of spit from Canada!

 

No plans to look beyond the UK at the moment I'm afraid.

 

Among the many forms of communication about DecodeME that the Edinburgh team have received, and are valiantly trying to respond to as quickly as possible, one was a poem, which the author has given us permission to share.

Good old M.E.


Good old M.E. and what a condition to be.

I live in folks bodies causing endless misery.

I'm cute and I'm clever, little old me,

because to the rest of the world there is nothing to SEE.


I'm sneaky, I'm smart I am a work of sheer art as I hide in folks genes never to be seen.


My time is running out, my fate is planned as the scientists hatch up a cunning plan.


But until that day when I am no more

I will bring endless heartache to the sufferers once more.

 

https://twitter.com/user/status/1583201071086067712

 

I suspect it has been posted before, but how soon do we get notified that the sample has been received? I sent mine off on the 13th.