Still to open How to make patients who aren't engaged in the patient community aware of studies recruiting?

The answer should probably be the same way as for other conditions, through primary healthcare or hospital specialists. But since many patients avoid engagement for obvious reasons, and far too many doctors aren't interested in ME, that's not really viable.

Social media is one potential avenue. I've been pointed to ME articles by people who neither have ME themselves nor any special interest in it, but it's obviously still finding its way onto their timelines.
 
For the GWAS, which will need 20,000 patients, I think we will have to ask each patient, carer and supporter to ask everyone in their social circle - family, friends, colleagues, etc. - to tell any patients that they know about the study, and ask that patient to ask everyone in their social circle to do the same, in an ever-widening series of ripples in the pond.

I've lost count of how many times a well-meaning friend or rellie has told me, 'my friend X had ME and she ate seaweed/meditated/lay under a steamroller and now she's completely cured!' So I already know that loads of people in my own social circle know - or at least know of - another PWME. I know lots of other people on the forums have had the same experience. So let's harness what has so far been a hugely annoying aspect of interconnectedness and use it to get closer to actual treatment!

@Simon M, @Chris Ponting
 
Another possible way forward is to encourage the engaged patients to act as nodes in the network. For instance, I have seven friends with ME, and three of them might well not pick up information about a study like this. One doesn't use social media or take part in forums, and is selective about the broadcasts they follow; the other two are severely affected and unable to engage much with any media channel. I can text information to all of them, though, and the severely affected ones have partners who'd help them participate.

Having now read through the thread about the GWAS study, I think the idea of 'every patient over 18' is a powerful one. It's such an unusual story that even the largest media channels would be likely to pick it up. However, press releases would have to be careful about terminology – for instance, patients recently given a CFS diagnosis may not realise that a study on ME might be relevant to them.

ETA: sorry, @Sasha, just realised you've said much the same thing!
 
I think this could be a great opportunity to highlight messages about ME to people working within the NHS. GP surgeries and the current CFS services should be asked to provide names. There should be posters about the research in surgeries. Local press should be alerted- Genetic researchers searching out thousands of people with ME.......

ETA people in local ME groups should be asked to help by posting messages on general local Facebook groups eg in my old area there was a Facebook group with 10,000 members.
 
I think that in case of cancer screenings people in the demographic age group at risk, get a notification to get tested and sometimes if they want to participate in a scientific study about this.

So maybe it's an option that GP's send a request to participate in the study to all patients in their registry that have a diagnosis of ME/CFS? Or would that be a violation of those people's privacy?
 
Kitty said:
Another possible way forward is to encourage the engaged patients to act as nodes in the network. For instance, I have seven friends with ME, and [...] I can text information to all of them [...]

ETA: sorry, @Sasha, just realised you've said much the same thing!
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Hi Kitty - I think you're right that we definitely do want engaged patients to reach out to others that they know. But my suggestion goes wider:

1. We contact everyone in our social circles, not just patients;

2. We ask everyone to contact everyone else they know, not just patients;

3. We make it clear that we want the message to keep spreading in a 'pass-it-on' way.
 
Sasha said:
I've lost count of how many times a well-meaning friend or rellie has told me, 'my friend X had ME and she ate seaweed/meditated/lay under a steamroller and now she's completely cured!' So I already know that loads of people in my own social circle know - or at least know of - another PWME. I know lots of other people on the forums have had the same experience. So let's harness what has so far been a hugely annoying aspect of interconnectedness and use it to get closer to actual treatment!
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Love this!

And I agree with the later comment that "pass it on" is key. For that reason, we need a good name for the GWAS project that people who know nothing about ME will remember and pass on. And that when you put into google will bring up the GWAS project website (so nothing too generic).

NelliePledge said:
I think this could be a great opportunity to highlight messages about ME to people working within the NHS. GP surgeries and the current CFS services should be asked to provide names. There should be posters about the research in surgeries. Local press should be alerted- Genetic researchers searching out thousands of people with ME.......

ETA people in local ME groups should be asked to help by posting messages on general local Facebook groups eg in my old area there was a Facebook group with 10,000 members.
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All of these are great ideas to spread the word - and especially to spread the word beyond the online patient community, which probably only reaches a fraction of patients. Eg there could easily be 120,000 UK adults with a diagnosis and probably fewer than 1 in 5 would be reached by our social media networks.

Michiel Tack said:
So maybe it's an option that GP's send a request to participate in the study to all patients in their registry that have a diagnosis of ME/CFS? Or would that be a violation of those people's privacy?
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Don't know, but I think it's hard to organise (because researchers for every disease would like to do this and GPs are very busy - regardless of getting ethical approval). I'm pretty sure the project will look at this, if funded.

I was surprised that the main FB group for my small market town has 15,000 members. There is also the option to write a letter to the local press, and contact local radio as well. All of this reaches beyond the (admittedly large) patient community bubble we inhabit.
 
Social media involving asking ie: ME Association, Carol Monaghan, @Tom Kindlon to help out.

I know one person directly who has ME but avoids forums and patient community because of how long she's had ME and how many times she got her hopes up, or to avoid the nasty BPS narrative that is very hurtful. I know another person who knows someone with ME. My husband comes into contact with quite a few people who have ME/CFS and he tells them about what to look up and forums etc, so I'm sure he would pass on information like that too.

Other than that, as others have said already, I'd say it's targeting support groups and maybe (I have some reservations but can't articulate why at present) GP surgeries.
 
Trish said:
Get Chris Ponting interviewed on TV news and chat shows.
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Now that is a very neat idea! We may not be able to get the media interested in ME itself, but the media is perhaps more likely to take a serious interest in one of the largest genome wide association studies ever undertaken in the UK; it becomes a human story. If that could happen then Chris Ponting would inevitably have the opportunity to talk about ME itself as well.
 
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It's a very good question. I guess most health studies are advertised in specialist clinics local to the study. That's a problem in ME/CFS with the lack of clinics.

Having a research coordinator can help with recruiting patients but this takes more funds. As we know there is usually not much funding for research, let alone for wages and infrastructure.

Finding healthy controls to participate is even more difficult. When you ask around it can get hard to find totally healthy people especially the older age groups, and then ones willing to participate in donating.

It will be interesting to see what comes of the Solve ME/CFS patient registry where people register as willing to participate and researchers can contact them based on location. I guess we will find out more if/when they formally launch.

Specifically for the proposed UK GWAS project I imagine managing the logistics of reviewing and accepting applications for up to 20,000 participants could be very challenging. At the beginning they will be swamped by requests for sample kits. I wonder if they can leverage some existing infrastructure for the current UK Genomes project for registering participants and sending out kits? The application review process where the diagnostic criteria is checked like people want to see happen will probably require some level of automation.

Once those people have enrolled and donated their sample, perhaps they can be asked to help promote the study and given materials to help with this if willing to do so. It feels good to have some ownership in the project, even if a small part. That's why having an efficient process at the beginning is helpful for making people feel good about the study, and recommend it to others. A "soft" launch may help iron out the initial teething issues.
 
I've had another thought. It's probably so idiotic that people will throw crockery at me, but just in case there are ways to automate it at low cost...

Lots of people are interested in their own genetic data. Some of us may have had one type of sequencing or another done, and I'm sure lots of other patients have thought about it.

Might it be possible to help raise money for the project by offering people access to their own raw data, in return for a donation? It could be used as one of the ways to publicise the project.

At best it might be an implausibly complicated distraction, and at worst an ethical nightmare – but I thought I'd say it out loud anyway. :)
 
Kitty said:
Lots of people are interested in their own genetic data. Some of us may have had one type of sequencing or another done, and I'm sure lots of other patients have thought about it.

Might it be possible to help raise money for the project by offering people access to their own raw data, in return for a donation? It could be used as one of the ways to publicise the project.
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It will be interesting to see more details when available of the non-profit Amy Proal and Kris Fobes are working on starting, and mentioned very briefly in Amy's Solve ME/CFS talk this week
 
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