Closed UK: DecodeME updates, was recruitment thread.

Trying to get an overview, so please correct my reasoning if I made errors.

The target recruitment is: DNA samples of 25.000 ME/CFS patients. Currently around 9.000 patients have returned a spit. Not all of these will be useable samples but I suspect most of them will be (and patients where the sample failed might be contacted again). So perhaps we can say that we're approximately at 1/3 of the target? EDIT: made a mistake, see comments below.

Decode officially launched in September 2022 and the protocol estimated that recruitment will continue until August 2024. So that is approximately 24 months of the recruitment time if I counted correctly. We're currently 5 months in, or approximately 20% of the recruitment time.

So still a lot of time to get the to the target recruitment but as Jonathan said, the first part was likely the easiest one.
 
Last edited:
I haven't followed this closely so apologies if the DecodeME team has already tried this but a lot of ME/CFS patients might have gotten a different diagnosis (fibromyalgia, chronic lyme, POTS, hEDS, MCAS, depression, burnout, etc.). Perhaps it is an option to target those patient communities through their charities and clinics?
 
Last edited:
I was also wondering: if the selection criteria turned out to be more selective than initially thought, is it an option to have a second inclusion round? For example, new and more inclusive criteria could be created for a group with "suspected ME/CFS" who met the second but not the first round. These could then be invited the submit their DNA spit after all if there is a lack of other participants. Then the researchers could do separate analyses on the ME/CFS group and the ME/CFS + suspected ME/CFS group for more statistical power and see if there are any differences.

Might not be a realistic option, but thought it would spell it out anyway.
 
ME/CFS Skeptic said:
I haven't followed this closely so apologies if the DecodeME team has already tried this but a lot of ME/CFS patients might have gotten a different diagnosis (fibromyalgia, chronic lyme, POTS, hEDS, MCAS, depression, burnout, etc.). Perhaps it is an option to target those patient communities through their charities and clinics?
Click to expand...
As our participants are required to report a diagnosis of ME/CFS from a health professional, we would only pick up additional patients who, presumably, had two different diagnoses (ME/CFS+another), which from a genetic analysis basis may not be desirable. Certainly an idea to keep in mind though.

ME/CFS Skeptic said:
I was also wondering: if the selection criteria turned out to be more selective than initially thought, is it an option to have a second inclusion round? For example, new and more inclusive criteria could be created for a group with "suspected ME/CFS" who met the second but not the first round. These could then be invited the submit their DNA spit after all if there is a lack of other participants. Then the researchers could do separate analyses on the ME/CFS group and the ME/CFS + suspected ME/CFS group for more statistical power and see if there are any differences.

Might not be a realistic option, but thought it would spell it out anyway.
Click to expand...
It's unlikely to be a realistic option for us unfortunately as things stand.
 
The UK has a great network of local groups, lots of Facebook groups along with national groups with significant reaches. And a lot follow ME/CFS news on social media (someone said once possibly a similar number to the US: last time I was able to access figures I had more followers on Twitter from the UK than the US). I think it would have better chance to reach such a target than most countries.
 
ringding said:
I contacted "my" one, North Bristol, and they already had a link on their webpage. But I think I convinced them to mention it as part of their Foundation course.
Click to expand...

Great job, @ringding! :)

I think this raises the question of what we should ask these clinics to do to recruit for DecodeME. Give each patient a leaflet as they come to the clinic? Send one with their appointment letter? Write to all their patients? Put up a poster in the waiting room? Something else? I have no clue what busy clinic people would be prepared to do or what avenues they have open to them.

What do you think, @Jonathan Edwards? If you were running an RA clinic now and somebody like Chris Ponting contacted you to ask for your help in recruiting your patients to an RA GWAS, what would you do to help get them? What would be a reasonable ask from the researcher, and what, if any, materials/info would you want to make it easy for you? Such as a poster, or a form of words to put on your webpage?
 
Andy said:
  • At the time of writing, we have over 23,000 people registered as a user on the DecodeME participant portal. Of those, over 17,000 participants have completed the questionnaire, and nearly 9,000 people have already been sent a spit kit.
Click to expand...
I’m guessing the 23,000 would include some people from other countries who were encouraged to sign up at one stage?
 
Sasha said:
What do you think, @Jonathan Edwards? If you were running an RA clinic now and somebody like Chris Ponting contacted you to ask for your help in recruiting your patients to an RA GWAS, what would you do to help get them? What would be a reasonable ask from the researcher, and what, if any, materials/info would you want to make it easy for you? Such as a poster, or a form of words to put on your webpage?
Click to expand...

I would be happy to give each patient a handout and put a poster in the clinic waiting area.
 
Trisha said:
I was thinking about the possiblity of contacting clinics, but I suspect at any one time there are only a few hundred people with ME attending them. From what I've gathered, many never attend ME clinics, and those that do have perhaps a course of 6 sessions and are never seen again.
Click to expand...
Andy said:
[...] there is no NHS-wide system of contacting all patients with a diagnosis of ME, so we are doing our best to find various ways to reach as many patients as possible. We have not encountered anybody within the NHS being obstructive to these efforts, and most are more than keen to pass details on to patients. However we only have a small team [...]
Click to expand...
Sasha said:
What do you think, @Jonathan Edwards? If you were running an RA clinic now and somebody like Chris Ponting contacted you to ask for your help in recruiting your patients to an RA GWAS, what would you do to help get them? What would be a reasonable ask from the researcher, and what, if any, materials/info would you want to make it easy for you? Such as a poster, or a form of words to put on your webpage?
Click to expand...
Jonathan Edwards said:
I would be happy to give each patient a handout and put a poster in the clinic waiting area.
Click to expand...
@Andy, has DecodeME contacted the ME/CFS clinics and asked for their help to recruit? As you point out, DecodeME has a small team but according to this 2017 paper, NHS ME/CFS clinics treat 8,000 patients a year so that's rich pickings.
 
When I was recruited to the PRINCE trial (CBT for “MUS”), the rheumatologist at the Lupus clinic had a stack of leaflets already printed out. As I was a patient who had chronic fatigue syndrome/fibromyalgia, he asked if I wanted to go on it. He said all the doctors in his clinic had been given these leaflets and told to ask anyone with these diagnoses/symptoms (and I’m guessing also other clinics in the hospital were told the same), even though Lupus isn’t connected to “MUS”, they still must see quite a few patients with fibromyalgia / ME and these diagnoses.

I think it would be a very good idea to get the DecodeME leaflets handed out or discussed at next appts / put up on boards at ME clinics (or even put up in rheumatology & other non-ME clinics depts). I’m sure doctors would be happy to talk to their patients about it at the next appt.
 
I’ve not managed to follow this thread closely for a while so apologies if I’m repeating. @Andy is there another press release planned to try to get some more media coverage? I seem to remember the launch was excellent but unfortunate with its timing as it coincided with a big news event that was consuming the media – can’t remember what.

Slightly random thought: do we know if Melvyn Bragg is still a trustee for AfME? I’m wondering if he could help. In Our Time on GWAS with Chris Ponting would be helpful. But if not, maybe he or someone else in the ME community has some contacts that could help. I have a couple of contacts I’d be happy to write to if there is another media campaign planned.

It would be great if we could get it on something like the One Show. I also think the Long Covid angle is probably the best way in with regards to the media – are there any high profile celebs who could be persuaded to help?

I’m not sure I’ve said anything very helpful. Just thinking aloud really. DecodeME are doing a brilliant job but my bones tell me that getting the extra numbers of participants is going to be really tough – which is puzzling if the prevalence data is correct.

Thanks again to everyone who’s helping with this – particularly the volunteers.
 
Last edited:
Article in PosAbility magazine about DecodeME and the impact of PPI on the study.

"Conducting research on participants who are often incredibly unwell comes with all kinds of challenges. That’s where Patient and Public Involvement (PPI) comes in. The study has formed an active partnership with people with ME/CFS right from the beginning of the process. Myself and others, who have valuable lived experiences, have contributed in many areas: the study design, recruitment process, marketing and communications, and plenty more, to ensure the research is as accessible and energy-friendly as possible for people to take part in.

Some of these measures are predictable – the ability to take part from home, a dark mode for the website, having a simple questionnaire process available online or on paper. Others are more nuanced: easy-read (and brain fog-friendly!) instructions for those completing a spit-kit, a phone line where people with severe ME can have somebody talk them through the questions and record their answers for them, and regular webinars with adjustments so that interested participants can also engage with the science behind the study. "

https://posabilitymagazine.co.uk/decodeme/

Click to expand...
 
Last edited:
Andy said:
Article in PosAbility magazine about DecodeME and the impact of PPI on the study.

"Conducting research on participants who are often incredibly unwell comes with all kinds of challenges. That’s where Patient and Public Involvement (PPI) comes in. The study has formed an active partnership with people with ME/CFS right from the beginning of the process. Myself and others, who have valuable lived experiences, have contributed in many areas: the study design, recruitment process, marketing and communications, and plenty more, to ensure the research is as accessible and energy-friendly as possible for people to take part in.

Some of these measures are predictable – the ability to take part from home, a dark mode for the website, having a simple questionnaire process available online or on paper. Others are more nuanced: easy-read (and brain fog-friendly!) instructions for those completing a spit-kit, a phone line where people with severe ME can have somebody talk them through the questions and record their answers for them, and regular webinars with adjustments so that interested participants can also engage with the science behind the study. "

https://posabilitymagazine.co.uk/decodeme/
Click to expand...
This article was included in the most recent newsletter from Raul Krauthausen, a German disability activist, https://us8.campaign-archive.com/?u=ff13c518142950e1da3755149&id=6a1786db36

Thanks to @MSEsperanza for pointing that out.
 
You must log in or register to reply here.
Back
Top Bottom