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

[Andy]

This post and the following ones have been moved from this thread.

I may well start a new thread for the GWAS application (and hopefully funded study) but for the moment I'll keep updates here.

Draft website goes live and feedback sought on recruitment plan.

So the draft GWAS project website has gone live, http://mebiomed.org.uk/ - please note that this is very much a work in progress, and much will change and improve over time.

Details on the draft recruitment plan and the ability to give feedback on the plan (or any other aspect of the project) can be found here, https://www.surveymonkey.co.uk/r/MEBioMedRecruit - this link can also be found on the homepage of the website.

 

[Andy]

Social media channels are now up and running as well
Twitter - https://twitter.com/MEbiomed
Facebook - https://www.facebook.com/mebiomed/

 

[wigglethemouse]

FYI @Andy - I found the OK button on the survey confusing. Is it meant to do something, or did it get left over by mistake?

 

[wigglethemouse]

So the draft GWAS project website has gone live, http://mebiomed.org.uk/ - please note that this is very much a work in progress, and much will change and improve over time.

On the webpage can you make the top image much shorter? On page loading in Firefox I cannot see the text. The top image is too large, and starts too far down the page.

Here is a screenshot what I see capturing the maximised window on Firefox



You may also want to add the word UK in the title........

 

[Andy]

I've fed both points back @wigglethemouse , thank you.

 

[ringding]

I've shared the survey details on the local ME Groups. There's been a reasonable amount of interest so far.
One question, is there anything that can be done by people to improve the likelihood of funding being granted?

 

[Andy]

One question, is there anything that can be done by people to improve the likelihood of funding being granted?

Thanks for asking. At this stage the biggest thing that the community can do is to offer ideas on how we might reach enough patients so that we get the 20k samples needed. We will do our best to create a comprehensive "outreach" program to reach both those in the patient community as well as those outside it, however the more suggestions from the community that we receive the better our program will be.

Should we do enough to convince the funders to back us, then the community will be vital in helping us spread the word far and wide of the project and the need for samples.

 

[ringding]

Thanks @Andy. I will make sure to encourage the group members to comment.

 

[Kitty]

At this stage the biggest thing that the community can do is to offer ideas on how we might reach enough patients so that we get the 20k samples needed. We will do our best to create a comprehensive "outreach" program to reach both those in the patient community as well as those outside it, however the more suggestions from the community that we receive the better our program will be.

Here goes with another one of my daft ideas. I'll say it anyway, though, just in case anyone can come up with anything better!

What if one of the major ME charities or groups put up a very simple online survey, asking people with ME to click whether they would – or wouldn't – be willing to take part in a study investigating the genetics of ME? Just those two options, and for UK patients only.

It would need a paragraph explaining that it's to test how many PWME can be reached, and how many of them would be willing to send a spit-and-post sample if the study can be funded. Make it easy to share on social media platforms and by email, and ask for something simple like the respondent's postcode to help cut down on duplicate 'votes' *. Encourage people to share it as widely as possible.

My impression is that ME patients in the UK are desperate to take part in research, but 98% of them have never had the chance. However, we all know how easy it is to make assumptions about how many people are actually connected to ME networks – this might give us an idea, specially if it's left open for some time.


* People could be given the option to supply contact details if they want to receive news updates, of course, but then you get into all the data protection stuff.

 

[NelliePledge]

Here goes with another one of my daft ideas. I'll say it anyway, though, just in case anyone can come up with anything better!

What if one of the major ME charities or groups put up a very simple online survey, asking people with ME to click whether they would – or wouldn't – be willing to take part in a study investigating the genetics of ME? Just those two options, and for UK patients only.

It would need a paragraph explaining that it's to test how many PWME can be reached, and how many of them would be willing to send a spit-and-post sample if the study can be funded. Make it easy to share on social media platforms and by email, and ask for something simple like the respondent's postcode to help cut down on duplicate 'votes' *. Encourage people to share it as widely as possible.

My impression is that ME patients in the UK are desperate to take part in research, but 98% of them have never had the chance. However, we all know how easy it is to make assumptions about how many people are actually connected to ME networks – this might give us an idea, specially if it's left open for some time.


* People could be given the option to supply contact details if they want to receive news updates, of course, but then you get into all the data protection stuff.

It would be a pretty good idea I think. If people don’t want to give their contacts they could be asked for the first 3 digits of postcode. That way areas where people aren’t coming forward can be identified so more work can be targeted at reaching people in those areas. Eg in my current city with no ME group reaching people will be harder.

 

[It's M.E. Linda]

Thanks for asking. At this stage the biggest thing that the community can do is to offer ideas on how we might reach enough patients so that we get the 20k samples needed.

@Andy Would you please check that Cure ME (UK ME/CFS Biobank*) will contact it's Severe patients/their Carers to ask them whether they would be prepared to join the study (and pass the details onto any friends)?

In addition, I believe that the Biobank* would also have waiting lists/previous contact details where people with ME have offered to help but they have not been able to accept them (or not yet) for some reason.

Hope you don't mind me adding this here, but I have already completed/sent my survey. Thanks

 

[Andy]

@Andy Would you please check that Cure ME (UK ME/CFS Biobank*) will contact it's Severe patients/their Carers to ask them whether they would be prepared to join the study (and pass the details onto any friends)?

In addition, I believe that the Biobank* would also have waiting lists/previous contact details where people with ME have offered to help but they have not been able to accept them (or not yet) for some reason.

Hope you don't mind me adding this here, but I have already completed/sent my survey. Thanks

Yes, wherever we can we will be re-contacting people who have already been in contact with CureME. However, we will have to abide by any applicable privacy and/or ethical concerns, so where patients/their carers haven't confirmed that they are happy to be contacted about other studies such as this then that probably will be a stumbling block.

 

[Robert 1973]

I’ve said this before, but I think we may need national media coverage in order to get enough participants. @Andy, or anyone else, do you know if the Science Media Centre has been approached to enquire whether it would be willing to facilitate a press conference with Chris Ponting and others who are involved with the proposed study?

I’m fully aware of the SMC’s history with ME/CFS but the sad fact seems to be that it is the most effective way to get science/health stories covered in the UK media.

My suspicion is that the SMC may not want to cooperate, or that it would insist on including some of its BPS ”experts” as part of the deal, but I still think it may be worth approaching it.

Does anyone have any ideas about how to get it into the media without the SMC? Sadly, past experience suggests that press releases from ME charities are not particularly effective at generating the sort of coverage that will be needed.

 

[Andy]

do you know if the Science Media Centre has been approached

No, I don't think it's been approached but the idea to do so is already on the table.

Does anyone have any ideas about how to get it into the media without the SMC?

If funded, we will be looking to engage with professionals in this area to assist us with this.

 

[NelliePledge]

@Robert 1973 John Siddle the ME Association press officer should be able to advise.

 

[It's M.E. Linda]

Just from memory, previous journalists who have made positive programmes/articles about M.E.
Could they be encouraged to run an ‘information and promotion’ article?

BBC Breakfast:

Steph McGovern (On maternity leave but also due to move to Channel 4) and Naga Munchetty hosted BBC Breakfast and interviewed Dr Charles Shepherd and Jen Brea when Unrest was first released.

Radio 5Live:

Nihal Arthanayake

Twitter:

@DrFrancesRyan (Guardian columnist)
@EmmaDonohue3 ( “M.E. and Me”)

 

[ringding]

I wonder if there's merit in celebrity endorsements? Suzi Perry had a health scare this year and was concerned that she may have ME. Don't know many details, I just follow her on twitter. If there are people like that who have a big reach then maybe they could help get to sufferers that might otherwise not hear about it.

In Australia Casey Stoner (former MotoGP champion, think Formula One but for motorbikes) has been talking about how he's been diagnosed with "Chronic Fatigue". Of course this brings into play the whole discussion about names and diagnoses BUT if part of the screening process is questionnaires that will categorise applicants maybe it's not too important to be picky about how the message is disseminated?

 

[Snowdrop]

I wonder if there's merit in celebrity endorsements? Suzi Perry had a health scare this year and was concerned that she may have ME. Don't know many details, I just follow her on twitter. If there are people like that who have a big reach then maybe they could help get to sufferers that might otherwise not hear about it.

In Australia Casey Stoner (former MotoGP champion, think Formula One but for motorbikes) has been talking about how he's been diagnosed with "Chronic Fatigue". Of course this brings into play the whole discussion about names and diagnoses BUT if part of the screening process is questionnaires that will categorise applicants maybe it's not too important to be picky about how the message is disseminated?

Unfortunately from what Ive seen it's a real coin toss with celebrity endorsements. It can go rather badly if they start going off script and endorsing non science and if they have their own story to tell their narrative while valid may not be what works best for advocacy of a large illness group. Just my own POV.

 

[Dolphin]

Here goes with another one of my daft ideas. I'll say it anyway, though, just in case anyone can come up with anything better!

What if one of the major ME charities or groups put up a very simple online survey, asking people with ME to click whether they would – or wouldn't – be willing to take part in a study investigating the genetics of ME? Just those two options, and for UK patients only.

It would need a paragraph explaining that it's to test how many PWME can be reached, and how many of them would be willing to send a spit-and-post sample if the study can be funded. Make it easy to share on social media platforms and by email, and ask for something simple like the respondent's postcode to help cut down on duplicate 'votes' *. Encourage people to share it as widely as possible.

My impression is that ME patients in the UK are desperate to take part in research, but 98% of them have never had the chance. However, we all know how easy it is to make assumptions about how many people are actually connected to ME networks – this might give us an idea, specially if it's left open for some time.


* People could be given the option to supply contact details if they want to receive news updates, of course, but then you get into all the data protection stuff.

This seems like a risky approach. If the results were good, the MRC and its reviewers would be unlikely to find it that convincing. But if the results were bad, it could be used against the application particularly if there was a biopsychosocial reviewer or someone else who thinks other conditions or research projects are more deserving of funding.

 

[Esther12]

IMO the only thing to be done at the SMC is to point out the appalling role they have played in promoting prejudice and misinformation.

They are so bad that anything good they do is likely to cause net harm by allowing them to point to that as an indication of how 'balanced' they are.