DecodeME - UK ME/CFS DNA study underway

Status
Not open for further replies.
Andy said:
That assumes that a. we wouldn't email both lists at the same time, and b. that we wouldn't clean the lists by removing obvious duplicates. I don't know, at this stage whether we will or won't do those things, but they seem, hopefully, to be obvious and sensible things to do. But, on balance, I think I would still prefer to send people two emails asking them to do the same thing rather than risk not sending them any at all.
Click to expand...
I'm confused. Surely the point of getting those early sign-ups was so that they'd be permanently on the mailing database (unless they asked to be removed)? Why would they have to sign up a second time?
 
Might this also have a tangential influence on the NICE guideline review? Such a clear signal of significant investment into biomedical research surely must make it a bit more difficult to plump for the BPS approach?
 
My impression from the website is that the researchers are interested initially in folks from the UK. Is this correct?

( Also, here in Canada a large majority of the population does have UK ancestry: England, Scotland, Wales, Ireland. Some people are of mixed UK ancestry and other European nations. In Quebec it is French ancestry, of course. ) Not sure what folks from elsewhere are to do regarding participation.
 
Sasha said:
I'm confused. Surely the point of getting those early sign-ups was so that they'd be permanently on the mailing database (unless they asked to be removed)? Why would they have to sign up a second time?
Click to expand...
Someone signing up to the mailing list is not automatically entered into the study as a potential participant, in the same way that, for example, I can sign up to receive newsletters from a website but not have an account with that website.

What I'm suggesting is that if you have already signed up to the original mailing list, there is no harm in signing up to this new one, other than potentially receiving two update emails from us at a time.

If you are confident that you are on the original mailing list, then don't sign up to this new one. The first list was our budget workaround at the time, the second list is now the 'proper' one, and all on the first list should be merged into the new list in time.

No matter which list you are on - first, second or both - you will still need to sign up to the recruitment process itself once it's opened.

I hope that clarifies it, let me know if not.
 
Perrier said:
My impression from the website is that the researchers are interested initially in folks from the UK. Is this correct?
Click to expand...
Yes, for ease of handling samples (domestic postage is easier and cheaper than international), and ease of having a ready made cohort of suitable controls (participants in the UK Biobank, not to be confused with the UK ME/CFS Biobank). Should we find recruitment difficult then we will look overseas.
 
Barry said:
Might this also have a tangential influence on the NICE guideline review? Such a clear signal of significant investment into biomedical research surely must make it a bit more difficult to plump for the BPS approach?
Click to expand...
For a start, it is 3.2 million pounds less they can grab from the UK research pot to further indulge their delusions.
 
Jonathan Edwards said:
I am a bit disappointed in To Whipple's piece in the Times. He really doesn't see the wood for the trees and tries to play all sides equally. On the other hand his piece is relegated to the bottom, as if maybe this is an echo of an old story finally fading off the page.
Click to expand...

yes very much agree I don’t even understand what point he’s trying to make about post covid-patient activists it seems to imply ME people will join the ranks of post covid folk which is a bizarre way of seeing/putting it.
 
Perrier said:
My impression from the website is that the researchers are interested initially in folks from the UK. Is this correct?

( Also, here in Canada a large majority of the population does have UK ancestry: England, Scotland, Wales, Ireland. Some people are of mixed UK ancestry and other European nations. In Quebec it is French ancestry, of course. ) Not sure what folks from elsewhere are to do regarding participation.
Click to expand...

Sticking to just UK subjects is to my mind crucial to the science for purely technical reasons. Even if people have similar ancestors a spurious result could very easily come out of the trial just because of a slightly different racial mix. If it really proves hard to recruit 20,000 from the UK then a compromise may be justified.

But if 3,300 people have signed on in 12 hours, and they are just the ones who have managed to get up and brush their teeth by noon and log on, then 20,000 should be doable. It has always seemed to me that the impetus to get this going is so strong that recruitment must go well.

Canada might be a good place to do a replication study though, because genetic background is broadly similar. That would get the genetics really nailed.
 
I’ve shared the guardian article on Facebook but also got a bit carried away and pinged it to most of my friends and family on messages. Never done that before but I feel this gives me a really positive message that I can use to highlight ME. Feeling chuffed. As well as the actual research the advocacy benefits are going to be BIG :D
 
obeat said:
Presumably anyone with long-term LongCovid who meets ME criteria could be eligible?
Click to expand...
Maybe one for the FAQs, @Andy - is it likely that post-corona patients are likely to get a 'post-coranavirus sydrome' diagnosis rather than an ME/CFS one from their clinicians and so be ineligible even though they probably should be?

(Edit: the FAQs currently say that you have to have an ME or CFS diagnosis.)

What do you think, @Jonathan Edwards?
 
Huge thanks to @Andy @Simon M Chris Ponting, Sonya, Luis and everyone else that’s helped to make this happen.

I notice that there is nothing about this on the Science Media Centre website (yet). I don’t know if that it a good or bad thing but it probably explains why there isn’t anything on the BBC website about it yet.

Like Jonathan, I was disappointed with Tom Whipple’s analysis in The Times – particularly as he has is one of the few UK journalists to have written articles critical of PACE. But great to have it mostly very well reported in the Times and the Guardian, which hopefully will lead to other media outlets picking it up.
 
obeat said:
Presumably anyone with long-term LongCovid who meets ME criteria could be eligible?
Click to expand...
Anybody who confirms that they have been diagnosed with ME or CFS by a clinician will then be eligible to complete the questionnaire that will determine if they are eligible to submit a sample or not. In terms of eligibility, we are not concerned about the cause of the symptoms that were diagnosed by a clinician to be ME or CFS.
 
@Andy - I still haven't received an email but gather from someone who has that it says that the study’s Management Team will host a Q&A webinar at 4pm on Monday 6 July, which is great news.

I just tried to add it to the S4ME calendar but I've forgotten how to do it.

Can you help?
 
Status
Not open for further replies.
Back
Top Bottom