Closed UK: DecodeME updates, was recruitment thread.

[Andy]

Pretty sure I know the answer to this but: have any of the existing clinics or services shown any interest in participating in this? Even if just in terms of putting out the message?

I honestly don't know. I know part of our outreach plan was to talk to BACME to see if they will spread the word but I don't know where we got with that. I have a vague memory of Sonya doing a presentation about DecodeME at, perhaps, their AGM.

 

[RedFox]

Over 10,000 people signed up to take part in our first week with over 7,000 already completing the questionnaire.

Oh boy, that's really good! Wishing you all the best!

 

[Tia]

Just a thought... I was listening to Adam Buxton's podcast this afternoon and I wondered if it would be worth asking him if he'd do a shout-out for Decode ME? (By shout-out I mean briefly inform people about it and provide website!) He occasionally does things like that if it's a charity he's interested in and last month he had Stuart Murdoch from Belle and Sebastian on. He seemed interested in Stuart's ME and asked quite a few questions it. I thought he was understanding and sympathetic so he might be willing to help out? His podcast has a huge listener base - millions of listens overall. Might be worth a try?

Adam Buxton is not on social media and the only means of contacting him seems to be via his agent: https://www.adam-buxton.co.uk/contact

 

[Andy]

Just a thought... I was listening to Adam Buxton's podcast this afternoon and I wondered if it would be worth asking him if he'd do a shout-out for Decode ME? (By shout-out I mean briefly inform people about it and provide website!) He occasionally does things like that if it's a charity he's interested in and last month he had Stuart Murdoch from Belle and Sebastian on. He seemed interested in Stuart's ME and asked quite a few questions it. I thought he was understanding and sympathetic so he might be willing to help out? His podcast has a huge listener base - millions of listens overall. Might be worth a try?

Adam Buxton is not on social media and the only means of contacting him seems to be via his agent: https://www.adam-buxton.co.uk/contact

Thanks, I'll pass the idea on. On the topic of Stuart Murdoch, he tweeted out about DecodeME here

 

[ringding]

I honestly don't know. I know part of our outreach plan was to talk to BACME to see if they will spread the word but I don't know where we got with that. I have a vague memory of Sonya doing a presentation about DecodeME at, perhaps, their AGM.

When I attended the Bristol clinic in 2019 they were recruiting for an MRI study at Uni of Bristol. I participated off the back of the talk they gave. So Bristol, at least, has done that type of publicising before, and for something that was looking at physical issues (which might come as a surprise).

 

[daftasabrush]

To be clear, I put mainland UK due to my knowledge of the issues with the specified areas. I'm not aware of any other such issues for any other area, so I'll now amend the detail in my original post to state UK (excluding Isle of Man and Channel Isles), instead of mainland UK only.

That is appreciated.

However I stand by my words on Action for ME failing to organise properly by leaving things to late and blaming the pandemic (among other things) rather than accounting for the fact that both Brexit and pandemic were predictable issues, this was not March 2019 but a long way into the pandemic. Christmas holidays of course are also predictable.

 

[Andy]

That is appreciated.

However I stand by my words on Action for ME failing to organise properly by leaving things to late and blaming the pandemic (among other things) rather than accounting for the fact that both Brexit and pandemic were predictable issues, this was not March 2019 but a long way into the pandemic. Christmas holidays of course are also predictable.

And you are, of course, entitled to your opinion. However, I would point out that the decision to commision the fulfillment company, which stored our spit kits, sending them out when asked in cardboard packaging that they supply, was taken equally by the members of the DecodeME management team, who are Sonya Chowdhury of Action for ME, Chris Ponting from the University of Edinburgh and myself.

Finding somewhere to store 25,000 spit kits and packaging at the University of Edinburgh, and to have staff available to process dispatch of the kits when required, would have been more than challenging, so we outsourced that problem to a company who specialise in that sort of service. Unfortunately, like many companies [media/industry reports on the shortage from June 2021, Oct 2021 and Dec 2021] at the time of the Nov 2021 update you quote, they were still struggling to obtain sufficient quantities of packaging, which they advised us, and in our efforts to be transparent to the community we included that in that update.

And I'm sorry that you have found our efforts to keep those interested in DecodeME informed so infuriating; we have always tried to be as open as we can be in the updates we send out, while also keeping them as brief as is possible while still getting the message across. I would hope by now that you would have taken advantage of the ability to unsubscribe from the updates, given you are not finding them useful. We will still continue to send them out, as and when we have something to communicate, as many recipients have let us know how much they appreciate our open communications.

 

[Sasha]

I think DecodeME is fantastic. But I understand that some might feel frustrated about some aspects of it. But I hope that we can all agree that we desperately need it to recruit as many patients as possible so that we can get it across the finish line and get the results as fast as possible.

Even those of us who can't take part will benefit from the results. We all need this to work.

I'd urge anybody who hasn't already told any other PwME about it to do so now, and to encourage them to join.

 

[Levant]

Just in case anyone has the same issue as me, I wasn't able to access the participant survey for registration on a Firefox browser, but it worked on a Chrome browser.
Might just be my settings on Firefox

 

[Andy]

Just in case anyone has the same issue as me, I wasn't able to access the participant survey for registration on a Firefox browser, but it worked on a Chrome browser.
Might just be my settings on Firefox

I think it will be dependent on what settings you had enabled (or disabled) in Firefox. We would expect the questionnaire to work on any major browser out there due to the platform it is built on but some people are finding that some security settings and security programs are disabling it for them. If people are encountering persistent issues then please contact the team at info@decodeme.org.uk, or see https://www.decodeme.org.uk/contact-us/ for alternative ways of contacting them.

 

[EzzieD]

I think it will be dependent on what settings you had enabled (or disabled) in Firefox. We would expect the questionnaire to work on any major browser out there due to the platform it is built on but some people are finding that some security settings and security programs are disabling it for them. If people are encountering persistent issues then please contact the team at info@decodeme.org.uk, or see https://www.decodeme.org.uk/contact-us/ for alternative ways of contacting them.

I'm on Firefox and was unable to access the survey at first. I use NoScript, UBlock and Privacy Badger to block unwanted stuff, and found that Privacy Badger was blocking it as a 'tracker'. I set Privacy Badger to allow it through, and then it worked fine. Hope this might help anyone who also has Privacy Badger!

 

[Tia]

arg, I've had my survey ready to send off. Logged in to check it and accidentally, stupidly, pressed the back button on my browser Oh dear. Do not do this! I now can't get back into my account. All I can think to do is re-register with a different email address and do the whole thing again. Oops.

 

[Kitty]

I now can't get back into my account.

It might help if you cleared the cookie that the survey website placed on your computer. You'd lose all your responses, but you might not need a whole new account? You shouldn't need to clear all of your cookies (and therefore sign out of, or not be recognised by, other accounts), just look for the most likely one on the list.

ETA: Found it quite easily on my list.

 

[Andy]

arg, I've had my survey ready to send off. Logged in to check it and accidentally, stupidly, pressed the back button on my browser Oh dear. Do not do this! I now can't get back into my account. All I can think to do is re-register with a different email address and do the whole thing again. Oops.

Tia, hopefully I'm in time to ask you not to sign up again, and to get in touch with out team at info@decodeme.org.uk. I think we would prefer to resolve situations like this than have people sign up multiple times. Given that it sounds like you had completed it, it would be a shame to ask you to go through it again.

Given that the survey saves each page as you go to the next, most, if not all, of your answers should be safe, we just need to get you access to your account to finish it off.

 

[Tia]

Thank you for your help @Kitty but unfortunately I tried it and it didn't work.

You got to me in time @Andy ! Thank you. I will do that. I didn't want to waste people's time so I thought signing up with another email address might be easier so thank you for letting me know.

 

[Andy]

Thank you for your help @Kitty but unfortunately I tried it and it didn't work.

You got to me in time @Andy ! Thank you. I will do that. I didn't want to waste people's time so I thought signing up with another email address might be easier so thank you for letting me know.

No problem, you are welcome. Obviously they won't be in the office today, as it is the bank holiday, so they will get back to you as soon as they can at some point this week. I'm also fairly certain that you wouldn't have been able to sign up again, unless you gave different personal information, as there are systems in place to prevent duplicates as much as is possible.

 

[Andy]

Scottish actor Mark Bonnar shared the study earlier this week.

 

[Trish]

The system is working - my daughter and I both did the questionnaire on the first day 8 days ago and have now both just received our emails saying we will be sent a spit kit.

I do understand that some others will get an email saying they won't be sent a spit kit and will probably be disappointed, but remember the questionnaires are all part of the study too, whether you do a spit kit or not. And regardless of whether we are individually included or not, I hope the study will provide useful information to help us all, participants or not.

Edit to add: I was surprised when playing a word game, phrazle (like wordle, but with phrases), that the ads that pop up between games included over the last couple of days ads for DecodeME with a link for participation!

 

[Peter T]

I got an email this morning saying they are not sampling my DNA.

I am not necessarily disappointed, but potentially worry that if the criteria are too strict too many people might be eliminated. I assume I was not included in the next stage because I ticked IBS as a concurrent condition. I did pause over ticking this as I have never in my own mind concluded if it makes sense to say I have IBS as a concurrent condition or if my IBS type symptoms would best be regarded as a feature of my ME.

(@Andy, do message me if you would rather I deleted this comment, in case it could be seen as potentially influencing how others might complete the questionnaire.)

 

[Lou B Lou]

I haven't had an email yet so don't know.

Could Decode state what the criteria are for inclusion or exclusion in the study, ie concurrent diseases, subsequent diseases, age, other ?