Closed UK: DecodeME updates, was recruitment thread.

I sent my second spit kit off, hope it works. Its my life's ambition to be a data point...

 

If you haven't sent it yet, there are 9 days left to get your spit kit in the post. We still have over 3,900 kits yet to be returned to us, so we are hoping for a last minute surge.

 

Useful to have that figure. I’ve just shared that on Twitter, Mastodon, Bluesky, Threads, Facebook and Instagram.

 

Hi @Tom Kindlon could i trouble you to pls share a link to your fb post - so i can share it. My brain is just mush & i cant for the life of me think how to find it or copy from a twitter post

 

Initially I had just shared a DecodeME post with the comment. But the information about the 3900 kits could get removed if re-shared so have now posted it as a new post here:

Or go to my Facebook page:

 

Thanks @Tom Kindlon

I may have asked you before... if so apologies i am muddled

 

No problem at all. There are always new people come along anyway who may not be aware of my page.

 

Last day to post your DNA sample kits, if you haven't done so already!

 

I had two main problems with the questionnaire:

There was no option to say that one had stopped taking a drug or supplement quickly because it had adverse effects (sometimes serious, resulting in hospital admission).

There was no option to say that depression was no longer a problem.

I submitted the comments to the Decode ME email address.

 

Yes, I was stuck with Loratidine for example. I took it in summer for over 5 years but it caused upper respiratory tract infection recurrence every year so I stopped taking it when I realised what was happening. So it was more than three years but is not ongoing. You could say the effect stopped but that was because I stopped taking loratidine! So that option would convey entirely the wrong information so the best answer seems to be to say it is ongoing, as it would be if I took it again.

However there should be an option to say it was stopped due to side effects and its confusing to mix period of effect modulated by accommodation to a treatment (i.e. effects wearing off either negative or positive) with period of treatment curtailed due to side effects in the same panel. There is no way to distinguish them.

I felt uneasy about the treatment of depression and other potentially psychogenic conditions as well, looked very much like a gift for BPS psychologists to datamine, with an option for ME patients to blame the ME as a sop.

Sorry, not trying to be mean, just felt a little like an elephant trap.

 

I had some difficulty with questionnaire 2 but took the view that I should just do the best I could and complete it. It was harder to complete and took longer.

One question in particular baffled me- I think it was qu15- and I did send a comment to the study who replied saying my comments would be passed on to the team.
I just send the team my best wishes and hope that my answers were accurate enough.

 

A reminder that if you haven't completed the second DecodeME questionnaire and have been invited to do so then you only have until the end of this month.

 

If DecodeME provides good results, I wonder if there would be any benefit to an even larger GWAS in the United States or the US plus several more countries. We have a larger population to pull from. Also, I wonder if it would help that we're more racially diverse. There might be genes that are risk factors for ME but only common in non-European populations.

 

Replication would always be a good thing and is something that we are proactively talking about with researchers who have access to existing datasets - however there isn't a well defined nationwide genetic dataset from the States, so for what it is worth we would support the establishment of one.

 

Just thought I'd post the reply to my comments, which came quite late:

"Dear *,

Thank you for your message and for accepting the invite to complete the 2nd questionnaire.

Thank you too for your feedback, I will pass your comments on to the team.

Unfortunately we cannot change the questionnaire at this stage, but will bear your comments in mind for the future .

If you have any further questions, please do let us know. We will be happy to help"

 

Social media post on the various DecodeME accounts.

"Thank you to everyone who completed the #DecodeME second questionnaire. We have received over 15,200 responses. We will work on analysing the data and will share the findings with you when we can."

 

Thanks, yes, we consider that a marvellous response rate for a second, optional, questionnaire.

 

Excellent. I think pwme are very committed to Decode. If only the NIH had involved the patient community prior to the study in the way Decode has.