DecodeME - UK ME/CFS DNA study underway

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Kirsten said:
Hi, i'm not sure if this has been covered already, but i couldn't find anything in the FAQs, so thought i'd ask here in case anyone knows. If something serious, other than ME is found on someone's sample, will they be notified of this so they can get the relevant medical treatment / preventative care, or not because there's too many subjects?

I'm not sure i'd want to know or not, on the one hand it would be good to know, but on the other hand i'm not sure i could cope with knowing anything else is wrong with my body... it's something that's always stopped me being too curious about the home genetics testing. But either way it would be good to know in advance of submitting a sample.

Thanks in advance to anyone who can answer and also to all those working hard to make this study happen!
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No, we won't contact anybody about anything found in any individual analysis for many reasons, one of those being that we won't be able to link the results from the analysis of individual data back to the specific donor. This particular point is covered in the patient participation information and I'll ask for it to be added to the FAQs on the website, as I think it is probably quite a common question.
 
Moved post

FMMM1 said:
Almost becoming a standard reply from me but the GWAS study (Chris Ponting - sampling starting in May) might provide a way to test hypothesis like this. E.g. presumably if this was a common mechanism then there would be clues in the GWAS results.

@Simon M
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Yes, it is something that you regularly post.

Obviously if there is a genetic component involved then yes, hopefully DecodeME will find it.

Not sure why you think DecodeME is starting "sampling" in May though as we hope to kick off recruitment far sooner than that, although I, along with the other members of the management team, are keeping an eye on how much disruption Omicron is causing.
 
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Andy said:
Yes, it is something that you regularly post.

Obviously if there is a genetic component involved then yes, hopefully DecodeME will find it.

Not sure why you think DecodeME is starting "sampling" in May though as we hope to kick off recruitment far sooner than that, although I, along with the other members of the management team, are keeping an eye on how much disruption Omicron is causing.
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When do you anticipate sampling to start (saliva in tubes)?
 
FMMM1 said:
When do you anticipate sampling to start (saliva in tubes)?
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It will be done in batches, so it will depend on when sufficient numbers of 'good' samples are returned. Samples can be 'bad' if they don't contain a sufficient quantity of DNA. But we are now heading completely off topic for this thread, our current thread for DecodeME is DecodeME - UK ME/CFS DNA study underway
 
FMMM1 said:
the GWAS study (Chris Ponting - sampling starting in May) might provide a way to test hypothesis like this. E.g. presumably if this was a common mechanism then there would be clues in the GWAS results.
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well, the data from the (edit) GWAS should prove a useful test for the vast number of competing hypotheses that are produced to explain ME/CFS. However, not finding a genetic signal would not be definitive, especially for a single GWAS of 25,000. It's not a small study, but hopefully, over time they will be more GWAS around the world and the results can be pooled: the bigger the total sample, the better chances of finding real effects.
 
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Latest DecodeME update.

Quick summary: Great news! DecodeME opens for first participants this month.

Recruitment will happen in two phases. Phase 1 opens on January 31 for around 550 people. Once we’re sure everything is running smoothly, we’ll open the study for everyone in the UK (Phase 2).

You do not need to do anything, we’ll send your invitation when you can take part.


We’re holding a webinar on Thursday 27th January at 10-11am to explain the recruitment process and answer your questions.

You can sign up to attend live on Zoom or wait for us to email you the recording and transcript later.


More information if you have time and energy:

Great news! DecodeME will launch this month. We’re excited to invite the first participants on January 31.

Recruitment will happen in two phases. First, over 50 people with severe ME/CFS will be invited to take part. They will complete the questionnaire on paper or via telephone (with support from the 25% ME Group).

Then we’ll invite up to 500 of online participants like you, chosen randomly, to take part in the study online.

This testing of our paper, telephone and online processes means we can make any improvements based on patients’ feedback. With over 30,000 people waiting to take part, we need to make sure the process is as smooth and inclusive as possible and the right support is in place.

Once we’ve completed this process, we will let you all know we’re ready for the full launch.

You do not need to do anything for now, we’ll be in touch when it’s time for you to take part and we’ll keep you updated on the process.


Want to know more? We’re holding a webinar on Thursday 27th January at 10-11am.


You can sign up to attend live on Zoom, watch live on Facebook, or wait for us to email you the recording and transcript later.

On this month’s webinar, me (Sonya Chowdhury) and Chris Ponting will explain the recruitment process.

Claire Tripp, a carer and part of the study’s Patient and Public Involvement steering group, will explain the important role ME/CFS patients and carers play in making the study as inclusive as possible.

Patients Life of Pippa’s Pippa Stacey and Blue Sunday: the Tea Party For ME creator Anna Redshaw will appear in video messages, explaining their roles talking to the online ME/CFS community about the study and encouraging people to register.

Thank you so much for your patience. We can’t wait to share the study with you soon.

Warmest wishes,
Sonya.

Sonya Chowdhury.
Chair, DecodeME’s Management Group.


If you've not pre-registered already then this can be done here, www.decodeme.org.uk

And shares of the social media post would be appreciated.
Click to expand...


Code: 
https://www.facebook.com/decodeMEstudy/posts/346086820852751
Click to expand...
 
Andy said:
I would be hugely surprised if, in the main, that the majority of people with any chronic condition who can work would be engaged with their patient community. I just think that it's human nature for most to not get involved because they are too busy trying to live as 'normal' a life as possible.

So bringing things back on topic, the challenge that we have with DecodeME is how to engage with those people and a lot of thought and effort is going into that.
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Apologies -- not able to catch up with ME news and DecodeME updates at the moment.

Thought about putting an e-mail together to family and friends who haven't heard from me for a long time due to my illness.(*)

I would like to ask them to help me and fellow sufferers whom this illness makes disappear from social life. They could help simply by spreading the word so that the study will find a sufficient number and 'mix' of participants.

Most of my (former?) friends don't know the name of my illness -- but now there is no reason for me to hide it anymore.

When I searched the forum for earlier tries to word such an e-mail I found the post quoted above.

--> 3 questions:

1. Is the challenge quoted above still present?

(If it it is, I think there could be also a relevant proportion of older, moderately to severely affected PWME who aren't active on social media or not in the ME bubble.)

2. Is it welcome to advertise the study at this stage?

3. Is there a maximum age for taking part?

(Also I found the minimum age for taking part only in the FAQ. I understand that the main page is intended to be kept as short as possible but think that basic information (age) could be worthwhile to be put on the main page / 'get involved' page and also into the messages to share?)

4. Not a question but once again a big thank you to all people involved.

(*) I'm not in the UK myself but my family and friends are connected with people who are.


(Edited for clarity.)
 
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MSEsperanza said:
1. Is the challenge quoted above still present?

(If it it is, I think there could be also a relevant proportion of older, moderately to severely affected PWME who aren't active on social media or not in the ME bubble.)

2. Is it welcome to advertise the study at this stage?
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To answer both of these at once, we are always looking to reach as many people as possible, of all 'sorts', so any advertisement of the study at any time is welcome.

MSEsperanza said:
3. Is there a maximum age for taking part? (Also I found the minimum age for taking part only in the FAQ. I understand that the main page is intended to be kept as short as possible but think that basic information (age) could be worthwhile to be put on the main page / 'get involved' page and also into the messages to share?)
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No, no maximum age, which is why we don't mention it. I can see the argument that confirming this at the same point as the minimum age wouldn't take much space at all so I'll pass the suggestion on.
 
Thanks, Andy.

And apologies: I can't understand how I could miss that the minimum age is the first thing mentioned below the headline on the "register your interest" form. :facepalm:

Andy said:
we are always looking to reach as many people as possible, of all 'sorts', so any advertisement of the study at any time is welcome.
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In this case, I hope it's OK to bump some earlier suggestions:

MSEsperanza said:
1) placing the study as often as possible in public media (UK and worldwide)

2) announcement in newspapers, including online announcements (UK) -- perhaps involve online marketing experts (social media)

3) leaflets and posters in public transport, drug stores, pharmacies etc. (UK)

4) leaflets and posters in clinics and doctors' offices (UK)

5) snow ball principle that doesn't rely on social media networks and algorithms (UK and worldwide)

Ad 2)-4) If public announcements/ posters are too expensive, perhaps consider additional crowdfunding?
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1) Leaflets / postcards

a) On the website to print them out at home

b) In addition, would the DecodeME budget for recruitment cover paper versions of leaflets and maybe also postcards that could be ordered on the website?

2) E-mail / letter to friends who haven't heard from us for a while due to our illness

Suggestions on a first draft are highly welcome -- see this members only thread.

(I hope this eventually could be used as a template).

Even if that will take a couple of weeks' time, I thought I'll leave my suggestion here already:

If you / the DecodeME study team likes the idea and if the template's final wording will find your approval, it perhaps could be helpful to add an according message on the website to share --

along the lines:

A friend I lost contact with [years/ months ago] just sent me this message. I didn't know how debilitating their illness could be. Please support people with ME/CFS by helping to find study participants for a large high quality research project. All you have to do is share this message or any other message provided by the DecodeME study's website [...]

(Edited to add link to members only thread.)
 
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Andy said:
Latest DecodeME update.

Quick summary: Great news! DecodeME opens for first participants this month.

Recruitment will happen in two phases. Phase 1 opens on January 31 for around 550 people. Once we’re sure everything is running smoothly, we’ll open the study for everyone in the UK (Phase 2).

You do not need to do anything, we’ll send your invitation when you can take part.


We’re holding a webinar on Thursday 27th January at 10-11am to explain the recruitment process and answer your questions.

You can sign up to attend live on Zoom or wait for us to email you the recording and transcript later.


More information if you have time and energy:

Great news! DecodeME will launch this month. We’re excited to invite the first participants on January 31.

Recruitment will happen in two phases. First, over 50 people with severe ME/CFS will be invited to take part. They will complete the questionnaire on paper or via telephone (with support from the 25% ME Group).

Then we’ll invite up to 500 of online participants like you, chosen randomly, to take part in the study online.

This testing of our paper, telephone and online processes means we can make any improvements based on patients’ feedback. With over 30,000 people waiting to take part, we need to make sure the process is as smooth and inclusive as possible and the right support is in place.

Once we’ve completed this process, we will let you all know we’re ready for the full launch.

You do not need to do anything for now, we’ll be in touch when it’s time for you to take part and we’ll keep you updated on the process.


Want to know more? We’re holding a webinar on Thursday 27th January at 10-11am.


You can sign up to attend live on Zoom, watch live on Facebook, or wait for us to email you the recording and transcript later.

On this month’s webinar, me (Sonya Chowdhury) and Chris Ponting will explain the recruitment process.

Claire Tripp, a carer and part of the study’s Patient and Public Involvement steering group, will explain the important role ME/CFS patients and carers play in making the study as inclusive as possible.

Patients Life of Pippa’s Pippa Stacey and Blue Sunday: the Tea Party For ME creator Anna Redshaw will appear in video messages, explaining their roles talking to the online ME/CFS community about the study and encouraging people to register.

Thank you so much for your patience. We can’t wait to share the study with you soon.

Warmest wishes,
Sonya.

Sonya Chowdhury.
Chair, DecodeME’s Management Group.


If you've not pre-registered already then this can be done here, www.decodeme.org.uk

And shares of the social media post would be appreciated.


Code: 
https://www.facebook.com/decodeMEstudy/posts/346086820852751
Click to expand...

This morning's webinar can be watched on Facebook here
Code: 
https://www.facebook.com/decodeMEstudy/videos/535714694840863/

 
Andy said:
This morning's webinar can be watched on Facebook here
Code: 
https://www.facebook.com/decodeMEstudy/videos/535714694840863/

Click to expand...


I missed this and I did have a question that I wanted to ask. I wonder if anyone can answer. Will people taking medication be excluded from the study? Will it depend on the type of meditation or does it not matter if you are taking medication?

The reason I'm wondering is that I take anti-virals (aciclovir) and I'm wondering if that will affect my eligibility for the trial.

Thanks.
 
Tia said:
I missed this and I did have a question that I wanted to ask. I wonder if anyone can answer. Will people taking medication be excluded from the study? Will it depend on the type of meditation or does it not matter if you are taking medication?

The reason I'm wondering is that I take anti-virals (aciclovir) and I'm wondering if that will affect my eligibility for the trial.

Thanks.
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Not as far as I know. Taking any medication won't affect your DNA. Possibly if you were on strong chemotherapy that causes severe fatigue, but I can't remember if that's in the screening questionaire.
 
Andy said:
No, I disagree. I would be hugely surprised if, in the main, that the majority of people with any chronic condition who can work would be engaged with their patient community. I just think that it's human nature for most to not get involved because they are too busy trying to live as 'normal' a life as possible.

So bringing things back on topic, the challenge that we have with DecodeME is how to engage with those people and a lot of thought and effort is going into that.
Click to expand...


Is the issue awareness of it or them not wanting to do it even if they know about it?
 
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