UK Genome Wide Association Study (GWAS) project - draft website goes live, feedback sought on recruitment plan, and updates

Sarah94 said:
So how are you going to convince patients that you are actually trying to help them and that they can trust you?
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This seems an important point.
However, I am fairly confident that the political concerns involved are only in focus for a rather small number of people who use forums. That might be 1,000 at most in the UK and the target population is 120,000. The great majority of people I know with ME are not aware of, or do not care about the political issues over criteria etc.

The point about AfME may be relevant though. I agree that a sensitive handling involving MEA as well would be good. I am rather hoping that patients can be recruited by a grapevine spreading out from S4ME in fact. If there are 2,000 people on here each one only has to reach out to 10 people to get the numbers. Being realistic 200 members might reach out to 10 who, on average, could reach out to 10 themselves. All that is need is goodwill and being prepared to answer a few questions and spit!

Edit: Together with what Andy has planned I cannot see how this can fail really!
 
Sorry to be negative. I can see how it could fail. Needing to recruit about 1 out of every 6 patients in the UK is going to be difficult. I suspect many patients are not in contact with patient organizations or their doctor. It will be very difficult to recruit them. It seems like we should aim to get every patient that is reachable through doctors and patient organizations and social media to act and participate, which will also be difficult.

We patients on social media tend to be educated and motivated about ME/CFS but I think there are many others who have little hope, don't feel the urgency, aren't in contact with other patients and may have had many disappointing experiences with past medical investigations.

It could be valuable to speak with this kind of patients and try to figure out what kind of message would get them to participate.
 
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Sarah94 said:
Sounds good. I'm sorry if my post came across as aggressive? I just meant it as throwing ideas out there. Am not good at tone in writing - I'm autistic so just speak directly and sometimes this comes across as rude? Sorry if so. Too much brain fog to think how to do differently. Only trying to be helpful.
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No, not aggressive, and thank you for your questions - obviously to convince as many patients as is possible to take part then we need to be able to answer any questions that come up. If I came across as defensive then I apologise.
 
Andy said:
Definitely 18 yrs and older, possibly 16 yrs and older. Recruiting younger volunteers always brings greater ethical concerns, and while we do want to recruit as many patients as possible the extra issues mean that we are unlikely to be able to recruit children. As far as I'm aware, there will be no upper age limit.

And yes, I'll ask for this to be added to the FAQ.
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Thank you!
 
strategist said:
I suspect many patients are not in contact with patient organizations or their doctor. It will be very difficult to recruit them. It seems like we should really aim to get every patient that is reachable through doctors and patient organizations and social media to act and participate, which will also be difficult.
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I am more optimistic. I don't see any real need to rely on recruiting through doctors or patient organisations. All of us know of a few hundred people either directly or by word of mouth. A few will have ME. I can immediately think of four people with ME who have nothing to do with doctors or patient organisations and with asking around a bit I could find ten in a week or two. My daughter, who is more sociable, almost certainly knows of 10 people with ME. It may be more difficult for PWME with limited social contact but if one person can be found with enthusiasm - a carer or relative maybe, they can take up the 10-finding.

From the point of view of getting an unbiased cohort I actually think there is a lot to be said for getting the message out in a completely indiscriminate way. I think the most biased cohort is likely to come from clinic lists or patient organisation registers. That is why I made the suggestion of aiming to get everybody and thereby trying to minimise biased selection.
 
strategist said:
Sorry to be negative. I can see how it could fail. Needing to recruit about 1 out of every 6 patients in the UK is going to be difficult. I suspect many patients are not in contact with patient organizations or their doctor. It will be very difficult to recruit them. It seems like we should really aim to get every patient that is reachable through doctors and patient organizations and social media to act and participate, which will also be difficult.
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Yes, we are not taking the issue of recruiting so many lightly and are doing our utmost to mitigate this, including looking at options on how to reach outside the current patient population sphere.

ETA: Although it is nice to see Jo more positive about it than we are. :)
 
people with ME are at vastly different levels of engagement with the ME Community

some live eat and breathe it so are aware of most things going on

some who are actively engaged take particular stances or take on board a particular approach to ME which means they disagree with a lot of stuff other people within the community do

there are people who engage with local groups or Facebook support groups who learn about some things that are going on through others sharing but don’t actively seek out information eg by following ME organisations

there are people who have been told they have CFS who accept what NHS has told them and may not have been in contact with others with ME/CFS.

People who have improved enough so they think they’re recovered and don’t even think about ME.

Those of us who are actively engaged and able to do a bit on social media will need to help out by sharing on general local Facebook groups. The ME organisations need to work together on a local media strategy. If articles can go on local press sites these can be used for sharing on social media. Local radio coverage would be good for reaching out. CCGs will need to be contacted to ask them to do their bit spread the word. If the information provided to CCGs is shared with patients some of us will be able to lobby for action. Posters to take to GP surgeries and Pharmacies. Contact pharmacy chains and pharmacist organisations to ask them to put up posters. Nursing organisations to highlight to practice nurses if any housebound patients have ME to let them know.

Suggest setting up an engagement volunteers group of people who will be prepared to help with cascading information.
 
I've two people in my family (aunt and cousin) who have bee diagnosed with ME (my Aunt was diagnosed in the 90's). Neither 'does' computers or the internet and I'm sure aren't in contact with any groups. I will make sure to discuss it with them.
We'll might get better returns than we think possible when we start looking outside our usual 'bubble' of internet connections. [I'm having a glass half full day!].
 
Sarah94 said:
@Andy
I advise NOT getting AFME to spread the word about it. That'll lead people to distrust. But if #MEAction or OMF is spreading the word too then it may be okay to have AFME spreading the word too.
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I totally understand why you suggest this. But I think AFME have a big following of patients who are not aware of the history and politics of ME, and that the only way to reach them might be through AFME.

There are probably more people in this category, than people would refuse to participate in the study just because AFME are involved.

I think a lot of people who aren't keen on AFME would feel this way because they are clued in to the ME community and know about the history, research groups etc., in which case they would probably also know that this is not a BPS study, and unless they are an extremist, would probably still participate despite their misgivings for AFME.

I think there are a LOT of people out there who have an ME/CFS or CFS diagnosis, who do have PEM, who have no idea about all the history and politics but who follow AFME for e.g. their information leaflets, online support group, etc.

Considering how many participants are needed, I think AFME would have to promote the study too, to reach their following who are not involved in the rest of the ME community. Lots of people find the ME world pretty scary, and AFME is quite 'tame', so I think they have this following who still might be valuable participants.
 
Jonathan Edwards said:
I am more optimistic. I don't see any real need to rely on recruiting through doctors or patient organisations.
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I am not sure I agree. There are many people with ME who are on GP or ME/CFS clinic registers who probably aren't engaged at all with ME organisations or online groups, and who might not tell people they have ME because of stigma.

For the first 6 years of my illness I didn't engage with anyone because it was either bloody scary, or not helpful, and family/friends didn't understand or care about ME so it just wasn't discussed. But my GP had a record that I existed, and they posted me an invite to join the CURE ME Biobank study. I would never have been recruited otherwise. I suspect there are many out there isolated in this way, but who will be reachable via GP or clinic registries, if GDPR allows for them to be sent ab invite to participate.

People with ME might also struggle to get the energy to enthusiastically recruit people. I am sure we will all try our best, but I think we need a multi-pronged approach and hit it from all angles and all avenues to reach as many people as possible.
 
I absolutely agree on the multi pronged approach - which is why I said 'rely on'. I am sure some patient can be found through clinics, GPs and organisations, but I think it would be misguided to think that those would be the only or main routes available.

I suspect I tend to get to know if people have ME even if I am being told about them not having met them because I am medical. I realise that a lot of people struggle with ME and try to keep it quiet for a good while. That may be a problem but since this is a genetic study thee is no great need to recruit people with recent onset me or even people with current ME (unlike a lot of studies). I suspect the majority of PWME are people who have eventually 'come out' with ME and found a modus vivendi and if only those are recruited I think it would be enough.
 
NelliePledge said:
I think it will be beneficial for the perception of ME generally the more the message about the study gets out there through different routes.
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Yes, I was thinking that even the process of recruiting for such a big genetics study, if promoted properly, might help to convince some of the sceptics out there of the veracity of ME and the value in studying it from a biomedical perspective.

I suppose this is why I am very in favour of using GP surgeries as recruitment hubs. Because even if it is possible to recruit enough people through social and mainstream media, word or mouth, patient organisations, etc. there are MANY GPs and other NHS workers who are still sceptical of ME.

If they are contacted and asked to help recruit patients to a large, biomedically-focused genomics study, it might help with the mass opinion shift that is needed to legitimise the disease in primary care.

I am thinking e.g. of my GP who is the research lead for the surgery, who still thinks ME is psychosomatic. This would provide a good reason to have a productive conversation with him about that. And another GP who I see a lot, whose wife is a geneticist. He is more supportive of a biomedical approach but I still detect hints of scepticism. Again, being asked to help with promoting a genomics study might pique his interest, encourage him to discuss it with geneticist wife, encourage more interest in the biomedical ME literature, etc. etc.

For this reason I think the name and publicity materials for the study have to look & sound professional. Marketing is important. I think OMF and the Harvard collaborative get good feedback partially (not solely of course!) because their websites, resources etc. are professional looking. Materials need to give off an air of legitimacy, scale, and professionalism to foster trust in the study, and encourage GPs etc. to feel it's worth paying attention to.
 
As was discussed by a bunch of us on the other thread about the study - i'm sorry I cant find it now perhaps someone else can? - I think the best way is to try to get Chris Ponting + Sarah Jarvis + a patient on TV - ie The One Show, This Morning etc

I'm sure that would reach masses of people, because all those watching who don't have ME but know someone who does, will be keen to let the pwme know. Every time there is a positive segment on ME on any tv show, at least a couple of people tell me about it & that's just a mention. If a scientist like Chris Ponting were on there with a Dr who is reasonably sympathetic like SJ, & a patient to ask for participation & explain how it's done... it would reach no end of people. … Not to mention the positive knock on effects for advocacy.

I don't know how that can be achieved but perhaps somebody does. Perhaps Dr SJ would be a good person to contact? perhaps she would have contacts in tv as she quite regularly features. (well lol I hardly ever watch these programmes, but have seen a her on a few times so unless that was bizarre coincidence...)
 
JemPD said:
As was discussed by a bunch of us on the other thread about the study - i'm sorry I cant find it now perhaps someone else can? - I think the best way is to try to get Chris Ponting + Sarah Jarvis + a patient on TV - ie The One Show, This Morning etc

I'm sure that would reach masses of people, because all those watching who don't have ME but know someone who does, will be keen to let the pwme know. Every time there is a positive segment on ME on any tv show, at least a couple of people tell me about it & that's just a mention. If a scientist like Chris Ponting were on there with a Dr who is reasonably sympathetic like SJ, & a patient to ask for participation & explain how it's done... it would reach no end of people. … Not to mention the positive knock on effects for advocacy.

I don't know how that can be achieved but perhaps somebody does. Perhaps Dr SJ would be a good person to contact? perhaps she would have contacts in tv as she quite regularly features. (well lol I hardly ever watch these programmes, but have seen a her on a few times so unless that was bizarre coincidence...)
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This.
BBC Scotland radio have been supportive of ME and given generally good coverage.

CS has been interviewed a number of times and the phone in is good at getting across levels of debility and how life changing ME is.

I am sure that there are other local stations too who have done similar, particularly around Millions Missing.

Everytime something makes it way onto general coverage, we always have friends getting in touch .
 
MerryB said:
Quick question to @Andy @Chris Ponting , and I apologise if I missed the answer to this in the FAQs:

Will you be asking patients to send in documentary evidence of their diagnosis along with the questionnaires?

[Edited to add this question: and if so, will you add a function to upload copies of evidence via the online forms?]

Thanks!
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No, we won't be asking them to send in evidence. This does mean that someone could falsely claim to have an ME diagnosis and access the questionnaire part of the study but (1) it's felt that the number of people who might do so is likely to be too small to be significant, and (2) we would anyway prefer to keep to a minimum the barriers to taking part for patients.
 
Andy said:
we would anyway prefer to keep to a minimum the barriers to taking part for patients.
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I think this is the right approach. There must be a lot of people whose only 'evidence' is a sentence in their GP records written many years ago, which is copied to their list of diagnoses and meds. Given the lack of objective tests, it isn't really evidence anyway.
 
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