DecodeME - UK ME/CFS DNA study underway

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Kirsten said:
I don't know if it's just in Scotland, but we have a thing called NHS SHARE ( https://www.registerforshare.org/ ) where you can sign up to agree to allow researchers access your anonymised coded data to see if you are suitible for their studies and then you get contacted to ask if you would consider taking part. Might be worth looking into?
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Thanks Kirsten, I've passed that on to the Cohort Delivery Team. :)
 
I've just seen a blog about DecodeME, which is linked from the MEA Facebook page. It's written by a not-for-profit car donation scheme that has named the MEA their charity of the month.

It suggests that the study involves taking blood samples:

https://giveacar.co.uk/blog/me-asso...3tTTbk4Y1tW4nhDNX4yPs9s-VtAfqJfldrL572Qb1l_eo

I've added a post underneath, asking the MEA to correct:

@ME Association: I realise this isn't your blog, but it says that DecodeME involves taking a blood sample, when it'll actually be a spit test. Would it be possible to clarify this, please? It could be an unnecessary deterrent for patients with a needle phobia, or who (understandably) want to be in contact with as few people as possible during the pandemic.

People who register their details will be sent an invitation to apply once the study gets under way. They'll later be sent a small plastic tube, which they just need to fill with saliva and pop back in the post. No needles or trips to a surgery required!

(I realise that it might be read as suggesting that everyone will automatically pass recruitment...but I thought that explanation was best not attempted in a short Facebook post aiming to correct a different misunderstanding!)
 
I don’t think that survey that was sent out today for DecodeME actually autosaves. I answered a questions to start it and because it said it saves it, I closed it. Then I re opened it and it’s starting from the beginning.

Or does auto save mean you have to keep the browser window actually open and loaded on your phone? (Or computer or whatever) but isn’t that what normal surveys do?
 
lunarainbows said:
I don’t think that survey that was sent out today for DecodeME actually autosaves. I answered a questions to start it and because it said it saves it, I closed it. Then I re opened it and it’s starting from the beginning.
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I didn't receive anything about a survey. I've just double checked my inbox. I usually get the update emails.

Is this something that just went out to a subset of individuals @Andy or have some of us dropped off the list?
 
lunarainbows said:
I don’t think that survey that was sent out today for DecodeME actually autosaves. I answered a questions to start it and because it said it saves it, I closed it. Then I re opened it and it’s starting from the beginning.

Or does auto save mean you have to keep the browser window actually open and loaded on your phone? (Or computer or whatever) but isn’t that what normal surveys do?
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Hi Luna, I've passed this feedback on and will let you know the response I get.

Invisible Woman said:
I didn't receive anything about a survey. I've just double checked my inbox. I usually get the update emails.

Is this something that just went out to a subset of individuals @Andy or have some of us dropped off the list?
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HI IW. Yes, it's a subset of the patients on the DecodeME contact list who will have received it. The team working on aspects of the user interface (for want of a better description) of the study wanted some feedback to guide them in their work, so sent the survey out to a limited number of, I suspect, randomly chosen individuals. So if you didn't receive anything, it should be only that you weren't in that random selection.
 
lunarainbows said:
I don’t think that survey that was sent out today for DecodeME actually autosaves. I answered a questions to start it and because it said it saves it, I closed it. Then I re opened it and it’s starting from the beginning.

Or does auto save mean you have to keep the browser window actually open and loaded on your phone? (Or computer or whatever) but isn’t that what normal surveys do?
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Hi Luna. Unfortunately it only saves it as long as the browser window is kept open, that is a limitation of Surveymonkey, which is what we are using to collect this feedback.

Later on, for the participant recruitment stage of the study, because we are using Solve's registry platform it will save after every page is finished and with that you will be able to close it, return to it and pick up from where you left off.
 
Simon M said:
not returning the spit kit
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The above snippet is from @Simon M's participation bias thread, but it isn't really the right one for this.

I'm thinking about enabling participation for patients who're severely affected or in a flare during the sample collection phase, but are living without much/any support. Some may really want to take part, but getting to a post box can insurmountably difficult. I wonder what people think about putting a line in the literature accompanying the spit kit that mentions Royal Mail's parcel collect service?

There may be objections because it would cost the participant a small amount of money (72p plus a Large stamp), and it might not even be available UK-wide. However, thinking back to times when I was in a nasty crash but didn't have support in place because I normally manage on my own, I'd really have wanted to know it might be an option.

Provided you can physically get to the front door, dealing with the postman/woman can be much less exhausting than with friends and family – who of course expect a whole conversation about how you are today.

(Apologies if this has been discussed before!)
 
From an email to the DecodeME contact list.

Recruitment start date update + our April Q&A webinar

We’d like to update you on the recruitment start date for the DecodeME study, and tell you about an upcoming Q&A webinar on the steps involved in joining.

As you might expect, we’ve faced some delays due to the pandemic. We’ve also adjusted our pace on aspects of our preparation, to make sure that people with ME/CFS could fully contribute to this phase of the study. Their lived experience and expertise is at the heart of DecodeME and we’ve made many changes at their suggestion.

As a result, we’ll now launch recruitment by the end of September 2021 and not May, as we’d originally hoped.   

This slight delay will help to ensure that the study runs smoothly once recruitment is under way. In the meantime, we’ve been busy organising ethical approval, creating a robust recruitment plan based on thousands of suggestions from people in the ME/CFS community, and developing and integrating the questionnaire.

We’re delighted that we already have over 23,600 people in the UK who want to take part in DecodeME when we launch. This is remarkable. Thank you.   

We’d like to invite you to our latest Management Group Q&A webinar, which focuses specifically on our recruitment process, so that people wanting to take part in DecodeME know what to expect. The webinar will run from 6:00–6:45pm on Thursday 15 April on Facebook Live. Please click the button below [here] to register for the webinar and to put forward any questions you have about the recruitment process.

Meanwhile, if you have any further questions about the project, please access the regularly updated  FAQs on our website. 


ETA: Change "our" to "the DecodeME".
 
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Text of a DecodeME email.


One day out,we’d like to remind you about our Management Group Q&A taking place from 6.00-6.45pm (BST) tomorrow.

The webinar is being streamed on Facebook Live, which you'll be able to view even if you don't have a Facebook account. We'll also be uploading a recording of the webinar to our YouTube channel in the days following the webinar, and we'll upload a transcript of the webinar to our website for those who find that more accessible than a video.

Watch the webinar here

We've already received a lot of great questions for our panel to answer. As this Q&A is focused specifically around the recruitment process, our Management Group will only be answering questions related to this topic. We do however have more webinars around other topics planned for the coming months which we'll keep you posted about.

Finally, if you have any further questions about the project, please remember that you can access the  FAQs on our website, which we update regularly.  

All the best and we look forward to seeing you tomorrow,  
The DecodeME Team  
 
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