UK Genome Wide Association Study (GWAS) project: indicate your support and/or willingness to take part and/or join the mailing list

Andy

Andy

Retired committee member
If we can show that the project has a high level of support from the community then it will enhance our chance of securing funding.

How to do this? Go to the https://mebiomed.org.uk/get-involved/

You should see
Screenshot 2019-12-23 at 08.22.02.png

with the survey in a separate box on the page under the block of text that starts "Would you be willing to potentially take part...". You will need to scroll within that box to see all of the survey options.

If you don't see it the first time, please close the page/tab and try again.

If you still don't see it unfortunately, at the moment, I have no solution that I can advise. However, this is not the one and only chance to express your interest/join our mailing list, should we secure funding then we will have an improved system in place.

Please share as widely as you can, to help, here is a Tweet
Code: 
https://twitter.com/s4me_info/status/1209040116901130240?s=20


and a Facebook post
Code: 
https://www.facebook.com/sci4me/posts/1010241746028901
 
MeSci said:
Thanks very much - I have signed up. I do hope they get a grant. I've been wanting to sign up for research into ME for as long as I can recall, and I've had it for over 24 years!
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I've sent the following email to four people, three of whom have ME and the other who has friends with ME:

'Dear All,

There is some important potential ME research proposed, and sufferers can indicate their possible willingness to participate here (filling in this form does not commit anyone to participating):

https://mebiomed.org.uk/get-involved/

(Let me know if the link doesn't work)

from this page: https://mebiomed.org.uk/faqs/

"The ME/CFS Biomedical Collaborative: Genetics and Biomarkers is the working title for a partnership of researchers, including Professor Chris Ponting and the CureME UK ME/CFS Biobank (UKMEB) team headed up by Dr. Luis Nacul, and ME/CFS patients, cares, and public. Early in 2020, the collaborative will make a grant application to the Medical Research Council (MRC) and the National Institute for Health Research (NIHR) for a very large genetic study, a genome-wide association study, and major expansion of the UKMEB."

"Post-exertional malaise (PEM) will be a mandatory symptom."

"We have chosen online recruitment and the “spit-and-post” design. This makes it possible for people who are severely affected with ME/CFS to join the study. It may also be possible for family, friends and carers to assist in completing the questionnaire and sending back the saliva sample."

Please forward to anyone else who may be interested.

Thank you.'

Anyone can use the wording if they want (if it's any good - I'm not quite with-it at present).
 
The title may be confusing with its mention of the UK. In fact, anybody anywhere can register their interest (I just did, and there was a field to enter your country). In the FAQs it says:
We are considering recruiting patients diagnosed with ME/CFS who live outside the UK. This would need to meet the appropriate high ethical standards to protect the privacy of individuals from other countries in the same way as people who are in the UK.
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https://mebiomed.org.uk/faqs/

They probably prefer to stick to the UK if they can recruit enough patients there. However, it would surely help the grant proposal if they can show large international interest as a backup plan.
 
MeSci said:
Just noticed a typo above: "Dr. Luis Nacul, and ME/CFS patients, cares, and public".

Can somebody notify them? I can't find anywhere to email.
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Typo now sorted.

Text has also been added to the page with the survey, to help those who might want to fill it in.
We do not yet have funding in place and are temporarily using Survey Monkey, to manage this, and will store the information you share with us safely and securely, as detailed in our privacy policy.

Use the grey slide bar on the right-hand side below to scroll down and take the survey. You can indicate your support, even if you do not have ME/CFS
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My wife just picked up this typo:
upload_2019-12-24_20-1-22.png

I think I'll have a wander round and see if any others jump out, as it doesn't look good.
 
Thank you for highlighting those issues Barry, I'll pass them on.

Barry said:
I think I'll have a wander round and see if any others jump out, as it doesn't look good.
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You say that, yet all you found was one missing letter and some numerical numbering that obviously hasn't worked as expected. Currently we aren't even working with a shoe-string budget, we are relying on people volunteering their time and paying for things out of their own pocket, so for you to find only those two errors, while regrettable, I would argue is excusable given the circumstances.
 
Andy said:
You say that, yet all you found was one missing letter and some numerical numbering that obviously hasn't worked as expected. Currently we aren't even working with a shoe-string budget, we are relying on people volunteering their time and paying for things out of their own pocket, so for you to find only those two errors, while regrettable, I would argue is excusable given the circumstances.
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Yes I appreciate that Andy, and I apologise for my rather tactless wording. But to clarify where I was coming from: I had asked my wife to look at the link I sent, because we had discussed it a bit and how it was sounding out interest in potential ME/CFS research that could be ground breaking with some very high calibre science and scientists involved.

I had already put my name down as being interested, and not spotted the typo.

Bear in mind my wife, like a great many pwME, is not science-oriented though fully appreciating its importance to us all; she copes by doing other things, and is not involved in advocacy etc.

It was probably my fault by not forewarning her beforehand that it was not a medical science team that had put the page together, but volunteers themselves pwME, and that it is very preliminary. So as she was looking at the page she simply exclaimed "Well they may be medical scientists, but can't spell 'disease' can they!". I then explained.

So yes, I do fully agree it is understandable, and how people are putting in superb efforts. But it would be wrong for me to not point out, for the greater good, that my wife (and others in a similar position) might have seen it as a red flag. When I myself am trying to assess the legitimacy of a website, any website, such misspellings are sometimes a clue. If my wife had not known the legitimacy from me already, she would have been suspicious of it, and I just worried that others might also. Needless to say my wife did respond with 'Yes'.

I was actually trying to help.

I would have been more than happy to proof-read content.
 
Social media from various charities is picking up now that the holidays are over.

ME Association monthly poll is about the GWAS, get to the poll on the MEA's website here, https://www.meassociation.org.uk/ (scroll down until you find it).
Please vote in this month's website survey. Are you willing to support the proposed major genetics study into ME/CFS?

Read the blog for more information about this important initiative. The application will still need funding from the MRC and NIHR but you can help by sharing your thoughts on recruitment with the research group. You can also show your support by registering your details on the ME/CFS Biomedical Partnership website: https://mebiomed.org.uk/
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Code: 
https://www.facebook.com/meassociation/posts/2733310623393245


They also have an article about it here, https://www.meassociation.org.uk/20...enetics-research-into-me-cfs-06-january-2020/

and have tweeted


Action for ME have tweeted


and Facebook'd
More than 1,500 people with M.E., carers, family members and friends have already shown their support for a potentially game-changing genetic M.E. study - but we need thousands more.

You can show your support by visiting the M.E./CFS Biomedical Partnership website and clicking "Yes, I support this research" to answer two simple questions (you can also register to receive email updates).

Please ask your family and friends to do the same, so that potential funders can see just how much support this biomedical M.E. research has.

More info about the Partnership in the comments below.
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Code: 
https://www.facebook.com/actionforme/posts/10157896580038209
 
MEAction Scotland have tweeted


and Facebook'd
***YOUR HELP IS NEEDED! PLEASE READ!***
Early in 2020, the ME/CFS Biomedical Partnership: Genetics and Biomarkers will make a grant application to the Medical Research Council and the National Institute for Health Research for a very large genetic study into ME known as a genome-wide association study.
The team behind the application needs your help. At this stage, you can help in two ways, whether you’re a patient or a supporter. First, everyone can sign up to say that they’d like to hear if the study gets under way so that they can help spread the word about it, and patients can indicate that they might like to take part in the study: https://mebiomed.org.uk/get-involved/
Please share as widely as possible on social media: Facebook https://www.facebook.com/mebiomed/
Twitter @MEbiomed
Second, the partnership would like your thoughts on how best to recruit patients. This will be a huge challenge and they need your ideas: https://www.surveymonkey.co.uk/r/MEBioMedRecruit
The project, a partnership of researchers, people with ME, carers and interested members of the public, will be led by Prof Chris Ponting at the University of Edinburgh in partnership with the UK ME/CFS Biobank at the London School of Hygiene & Tropical Medicine.
The study will analyse DNA from the saliva of 20,000 ME patients to see whether ME is partly genetic and if so, what causes it. The study should help understand the disease and find treatments.
You can find out more about the study on the partnership's FAQs page: https://mebiomed.org.uk/faqs/
This is a historic opportunity for ME patients. Please get involved however you can and help to make it happen.
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Code: 
https://www.facebook.com/meactionscot/posts/2541088129545599
 
As has MEAction UK


***YOUR HELP IS NEEDED! PLEASE READ!***
Early in 2020, the ME/CFS Biomedical Partnership: Genetics and Biomarkers will make a grant application to the Medical Research Council and the National Institute for Health Research for a very large genetic study into ME known as a genome-wide association study.
The team behind the application needs your help. At this stage, you can help in two ways, whether you’re a patient or a supporter. First, everyone can sign up to say that they’d like to hear if the study gets under way so that they can help spread the word about it, and patients can indicate that they might like to take part in the study: https://mebiomed.org.uk/get-involved/
Please share as widely as possible on social media: Facebook https://www.facebook.com/mebiomed/
Twitter @MEbiomed

Second, the partnership would like your thoughts on how best to recruit patients. This will be a huge challenge and they need your ideas: https://www.surveymonkey.co.uk/r/MEBioMedRecruit
The project, a partnership of researchers, people with ME, carers and interested members of the public, will be led by Prof Chris Ponting at the University of Edinburgh in partnership with the UK ME/CFS Biobank at the London School of Hygiene & Tropical Medicine.
The study will analyse DNA from the saliva of 20,000 ME patients to see whether ME is partly genetic and if so, what causes it. The study should help understand the disease and find treatments.
You can find out more about the study on the partnership's FAQs page: https://mebiomed.org.uk/faqs/

This is a historic opportunity for ME patients. Please get involved however you can and help to make it happen.
Click to expand...
Code: 
https://www.facebook.com/MEActNetUK/posts/2447926412191974
 
MEA Website Survey: Why are we asking about genetics research into ME/CFS? | 06 January 2020

https://www.meassociation.org.uk/20...enetics-research-into-me-cfs-06-january-2020/

Dr Charles Shepherd, Hon. Medical Adviser, ME Association.

The ME Association has been actively involved with the ME/CFS Biomedical Partnership in preparation of a major research grant application that will investigate the genetics of ME/CFS.

The ME/CFS Biomedical Partnership: Genetics and Biomarkers is a partnership of researchers, people with ME/CFS, carers and the public.

The partnership will shortly make a grant application to the Medical Research Council and the National Institute for Health Research for a very large genetic study into ME/CFS known as a genome-wide association study (GWAS)…
 
The poll options

  • If funding becomes available from the MRC would you be willing to take part in research that will investigate the genetics of M.E.?
  • Yes. I have M.E. and I support this research.
  • Unsure. I have M.E. but I am not sure of my support at this stage.
  • No. I have M.E. but I do not support this research.
  • Yes. I don’t have M.E. but I support this research.
Poll can be found on their homepage, https://www.meassociation.org.uk/
 
Sasha said:
Has ME Research UK been contacted? They have over 8,000 followers on FaceBook and 1,000 on Twitter.
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Yes, they are part of Forward-ME, who are part of the PPI Steering Group, so should be getting the all the updates via Margret Mar. AfME and the MEA are more directly connected to the project, so it's understandable that they'll be quicker off the mark with promotion.
 
The NEN – North Edinburgh News
Letters: Support the M.E. study
Dear Editor

Many of your readers will know at least one of the 250,000 children and adults in the UK with myalgic encephalomyelitis (M.E.), also diagnosed as chronic fatigue syndrome (CFS, or M.E./CFS) – though they may not see the devastating toll this serious neurological condition can take.

A lack of research means that we don’t yet know the cause, or have an effective treatment – but a large, planned genetic study could change that.

With scientists and patients working together, the M.E./CFS Biomedical Partnership is applying for funding to test DNA samples from 20,000 people with M.E.

Readers can show their support for this potentially game-changing biomedical research, and sign-up for updates, at www.mebiomed.org.uk/get-involved

Sonya Chowdhury, Chief Executive, Action for M.E.

Andy Devereux-Cooke, patient and CureME Biobank Steering Group member

on behalf of the M.E. Biomedical Partnership www.mebiomed.org.uk @MEbiomed
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https://nen.press/2020/01/07/letters-support-the-m-e-study/
 
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