Closed UK: DecodeME updates, was recruitment thread.

Andy said:
"DecodeME participation and criteria for the DNA stage

We know how important DecodeME is to people with ME/CFS and we are grateful to the patient community for such a positive reaction to our launch. We have also seen and taken on board the frustration expressed by some who haven’t been asked to donate a DNA sample, and wanted to address the various points raised.

If you have completed the DecodeME questionnaire but have not been asked to provide a DNA sample it is not because we are questioning if you have ME/CFS. You are still a DecodeME participant and your questionnaire answers are valuable to understanding more about the illness and helping the development of future treatments.

It means that for this study your answers didn’t meet all requirements for the DNA stage. These requirements are set out by the study criteria that were agreed by the team, including people with ME/CFS, and in response to peer review. This is standard practice and ensured that the study received funding. Using strict criteria is important for scientific research studies as it ensures the results can stand up to scientific scrutiny and therefore progress further research and the development of treatments.

The DNA part of the study will help us understand the biological causes of ME/CFS which will benefit the whole community whether individuals meet the criteria we are using or not.

We also understand any frustration caused by not knowing why you weren’t asked for a DNA sample or why you weren’t able to view the criteria before completing the questionnaire. We don’t take this frustration lightly, however, it is vital that we not disclose the criteria at this stage. If we had, this would inevitably introduce unwanted bias into the study. It is essential that we protect the integrity of the DecodeME study design for when we publish results. Only then will we make the criteria publicly available. We hope you understand that our reasons for this are in the best interest of the whole ME/CFS community.

As with every aspect of this study, there was strong Patient and Public Involvement (PPI) in the decisions about the criteria used. For more information on the Patient and Public Involvement in the study please read our FAQ: How have you involved the community in the design of the project?

We are so grateful for everyone who has signed and up and taken the DecodeME questionnaire and appreciate the energy and emotions that may have gone into it. We hope the above has provided more clarity on the processes in place for the DNA stage of the study and emphasised the importance of ALL DecodeME participants, not just those asked for a DNA sample.

Thank you for supporting the study, your experience matters.

Warmest wishes,

The DecodeME team."

Original here, https://www.decodeme.org.uk/participation-and-criteria-for-the-dna-stage/
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:emoji_clap: well done DecodeME team!

Also, just to note in case it's helpful for anyone:

- I had previously locked myself out of my account by pressing the 'back' button on my browser (I know they specifically said not too, my concentration lapsed!) I took Andy's advice and emailed the team about it earlier in the week. They got back to me with a work-around so I've now been able to complete the questionnaire. So it's worth emailing if you have any issues! (Although I gather it's taking a while for them to respond currently as email volume is high at the mo).
 
Andy said:
"DecodeME participation and criteria for the DNA stage

We know how important DecodeME is to people with ME/CFS and we are grateful to the patient community for such a positive reaction to our launch. We have also seen and taken on board the frustration expressed by some who haven’t been asked to donate a DNA sample, and wanted to address the various points raised.

If you have completed the DecodeME questionnaire but have not been asked to provide a DNA sample it is not because we are questioning if you have ME/CFS. You are still a DecodeME participant and your questionnaire answers are valuable to understanding more about the illness and helping the development of future treatments.

It means that for this study your answers didn’t meet all requirements for the DNA stage. These requirements are set out by the study criteria that were agreed by the team, including people with ME/CFS, and in response to peer review. This is standard practice and ensured that the study received funding. Using strict criteria is important for scientific research studies as it ensures the results can stand up to scientific scrutiny and therefore progress further research and the development of treatments.

The DNA part of the study will help us understand the biological causes of ME/CFS which will benefit the whole community whether individuals meet the criteria we are using or not.

We also understand any frustration caused by not knowing why you weren’t asked for a DNA sample or why you weren’t able to view the criteria before completing the questionnaire. We don’t take this frustration lightly, however, it is vital that we not disclose the criteria at this stage. If we had, this would inevitably introduce unwanted bias into the study. It is essential that we protect the integrity of the DecodeME study design for when we publish results. Only then will we make the criteria publicly available. We hope you understand that our reasons for this are in the best interest of the whole ME/CFS community.

As with every aspect of this study, there was strong Patient and Public Involvement (PPI) in the decisions about the criteria used. For more information on the Patient and Public Involvement in the study please read our FAQ: How have you involved the community in the design of the project?

We are so grateful for everyone who has signed and up and taken the DecodeME questionnaire and appreciate the energy and emotions that may have gone into it. We hope the above has provided more clarity on the processes in place for the DNA stage of the study and emphasised the importance of ALL DecodeME participants, not just those asked for a DNA sample.

Thank you for supporting the study, your experience matters.

Warmest wishes,

The DecodeME team."

Original here, https://www.decodeme.org.uk/participation-and-criteria-for-the-dna-stage/
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Nicely worded.
I hope that will answer the questions of most.
 
I completed the study today and wasn't chosen to take part. It is quite disappointing on an emotional level even if intellectually I entirely agree with all that's been said.

I guess it's just a consequence of years of uncertainty and gaslighting by docs.

But other than that I am hopeful about the study and very grateful for the work that's being done on our behalf.
 
Tia said:
I'm wondering when they are being sent out.
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First batch is going out early next week. The strikes by the postal workers today and tomorrow may mean a short delay for delivery though.

Tia said:
Also, wondering if they fit through the letterbox or if you need to be in to receive it?
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We've been advised that the size of the packing used should fit in standard sized letterboxes.
 
For those asked to donate a sample, spit kits are now being sent out.

"#DecodeME participants also asked for a DNA sample will receive a spit kit in the post soon. It may take some time for the many kits to be sent out. Don’t worry as they are on their way. If you have received yours, share your experience: #SpitToDecodeME"

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Code: 
https://www.facebook.com/watch?v=1287816878633735
 
MeSci said:
I hope that ME-fog-proof instructions are also included in the package.
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Well, both the Twitter and Facebook posts linked in my post above have a video demonstration of what to do. Also this small selection of feedback on social media seems to suggest that we haven't done too badly in making the instructions as clear as possible.

"Received and returned my DecodeME spit kit today. Very straightforward with clear instructions."
and
"Mine also came today. Instructions are indeed very clear, and it's very easy to do."

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I got my kit yesterday. I meant to take the sample and send it off whilst I was on my way to swimming this morning, but the box got hidden under a book and therefore no longer existed as far as what passes for my mind was concerned. :rolleyes: Tomorrow, hopefully.

ETA: added word "send"
 
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Thought this would be useful to post here.

With spit kits being sent out to donors some have been asking if a sample being delayed in the post would be an issue.

The simple answer is that the likely delay caused by a postal strike is very unlikely to cause any issue. The storage tube contains a stabilizer which should see your sample reach us with no problems at all.

And if there is, the quality control process should flag it and we would simply ask you for a new sample.
 
A post not about recruitment.

Chris, Diana (our project manager) and I met with Theo Richardson-Gool, from the MRC's Integrative Epidemiology Unit at the University of Bristol to discuss how DecodeME have involved the patient voice from the start of the project.

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Theo assured us that he has used the only screenshot that he took.... ;)
 
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