Closed UK: DecodeME updates, was recruitment thread.

Once again I haven't received the email, nor is it in junk. Perhaps it will come tomorrow. There has been a tendency for me not to receive info.

I have promoted on social media but hadn't seen the post about images #29. Great idea. Will use in future.

 

Hi Binkie, thank you for promoting the study to others. If you've not seen your email by now then I'm afraid it will have been lost in a corner of the internet somewhere.

When you are ready to start the questionnaire, please visit https://www.decodeme.org.uk/portal/ and click on the "sign up" button. Anticipating a question that you might have, yes, you will have signed up for updates previously but now we need you to sign up to the recruitment process proper.

 

Thanks @Andy.

 

My foggy brain is trying to come up with words of encouragement and all it can do is: go team!

So, uh, go team!

 

DecodeME is worth it just for the pleasure of seeing all that really good mainstream press coverage for a change, especially the portrayal of patients as intelligent, competent and active agents in progressing research. Well done, team DecodeME.

 

On the BBC News site, admittedly tucked away in the Edinburgh area section of the site rather than national section.

Experts launch world's largest genetic study of ME, https://www.bbc.co.uk/news/uk-scotland-edinburgh-east-fife-62876472

 

Thanks. I know that additional care was taken with the press releases and they included a list for the editors of what to do and not do i.e. do use ME/CFS, don't use CFS/ME and don't abbreviate CFS to "chronic fatigue". It's been very pleasing to see how much that was followed, although I think it was helped that it seems they were very happy to copy-and-paste most, if not all, of our press release.

 

I started yesterday, but have paused to consider whether I want to allow access to my medical records. I have a lot of trust in the DecodeME team, so it's not about that. I'm just worried about what's in my medical records. I've not been treated as badly some, but I have been gaslit, and there could be damaging opinions, even diagnoses that I don't know about, in there. I hope DecodeME will know not to treat our medical records as absolute objective truth.

 

Congratulations to the team on this huge milestone.

 

Hi, thanks for taking part. Access to medical records, while something that would be 'nice to have' for analysis of the data, is secondary to being able to analyse the genetic material from the saliva samples donated. Please take the time you need to make your decision but we'd prefer by far that people agree to the parts of the study that they are happy with, rather than them potentially not take part at all due to being less than happy with one optional section of it.

 

Andy, can you confirm what will exclude people from being asked to send a saliva sample please?

( just to make it clear that they won't be excluded because they refuse access to medical records etc)

 

Great short interview with Chris on Radio 4, https://www.bbc.co.uk/sounds/play/m001byy7, interview starts at 48:36

 

People chosing not to allow us access to their medical records will not stop us asking those people for their saliva sample. The decision on whether we ask for a saliva sample or not comes from the part of the questionnaire about your illness, not from the additional 'permissions' that you can allow or not (i.e. access to medical records, contacting about other studies, etc).

 

Nice! That's a win.

 

Yes, has been really great to hear people for the most part sticking to it. Chris did very well to bat away Aasmah Mir's "yuppie flu" comment. That definitely seems to be the best way to treat that stuff now - just don't give it oxygen!

 

Thanks to everyone who has helped with this. Publicity has been brilliant despite the misfortune of the timing. Huge congratulations.

One small observation/query, which I think I may have raised when the draft questionnaire was being discussed: I didn’t know how to answer the question about muscle pain. A huge part of my 30 year illness and disability has been pain, but I’ve never described it as muscle pain or myalgia. It is everywhere pain but it is not specifically in my muscles, although it is made worse by using my muscles, particularly for aerobic activity. I decided not to tick yes to having muscle pain but there didn’t seem to be anywhere else to register the type of pain which has been such a significant part of my illness. I appreciate all the difficulties of devising the questionnaire, and I know that it is too late to change anything, but I just thought I’d mention it to make sure those involved with interpreting the data are aware of this possible confusion. I’m not particularly knowledgeable about other people’s symptoms but I thought my experience is this type of pain was not uncommon in ME/CFS. Apologies if I’m posting this is the wrong place or if I have missed something in the questionnaire. I’m writing this from memory and I was struggling with concentration when I completed the questionnaire yesterday. On reflection, I should probably have saved it and come back to it later.

 

Thanks Robert, I'll pass that back to the team.

 

I hesitated over this too (I finally re-registered, for the 3rd time, I think!).

Like a large percentage of sufferers, I have a lot of misinformation on my records. I submitted a document years ago to correct the errors, but it was just attached to the records and nothing was actually changed.

 

are they also recruiting for healthy controls? or just patients?