Closed UK: DecodeME updates, was recruitment thread.

ukxmrv said:
It's not the case for another study called Viking2

https://www.ed.ac.uk/research/latest-research-news/study-seeks-people-with-northern-isles-ancestry

Future healthcare
For those living in the UK who volunteer to be part of the study, they can choose to have information on limited genetic results returned to them through the NHS. This information could be useful in terms of their future healthcare, including taking preventive actions to reduce the impact of health conditions.
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4000 people though
 
Andy said:
I'm aware that I still owe you a full answer from your earlier query but in the interim, you can read what the Viking Genes study says about linking health records here, https://www.ed.ac.uk/viking/about-us/what-we-do/ehr-linkage (the relevance is that it is another GWAS conducted by the University of Edinburgh, and one of our team members, Dr Shona Kerr, is also part of the Viking Genes team).

On that page you can see an image that confirms that we would only receive codes and data points extracted from your record, not a copy of the whole thing. Hope this helps.
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Thanks @Andy that's really helpful, I'll give it a read.
 
Pleased to see lots of publicity about the new DecodeME study, just wish more of the history could be acknowledged.

Its been described as one of the biggest scandals of this century saying its been neglected doesn't really do it justice. I also think that it would help differentiate ME from other neglected diseases.

Sonyas interview was 17 minutes and she didn't mention the harm or the poor quality research.

Can anything be done to address this in future? Perhaps a list of key messages can be agreed in advance. It would be good to include patients in this process if possible.

Some suggestions off the top of my head.

- Over 30 years have been wasted on psychological treatments and research.

- NICE withdrew psychological treatments because all the evidence was low or very low quality.

- Thousands of patients have been harmed, many who could previously walk ended up in wheelchairs or bedbound.

- The psychological model has also added to the stigma and misunderstanding with patients often being blamed for not getting better.

- Millions have been wasted and decades lost. Patients have no treatments and little hope. Decode ME is a start but we need huge investment to make up for lost time and the harm.
 
I've not listened to that particular interview so I don't know what was discussed but the primary aim of any interview about DecodeME and the launch is to get pwME to take part. An obvious secondary topic that is likely to come up is why this research is necessary, and in the interviews that I have heard that Chris has particpated in he has talked about how seriously affected people can be with ME and that there are no effective treatments and not enough understanding of the disease process.

I trust that Chris, Sonya and Sian, who so far have been the ones from the DecodeME team to take part in interviews, could talk about the points you suggest, however I would be disappointed if valuable, and normally extremely limited, interview time was taken up with discussing the past when the present need for people to actually take part wasn't adequately covered.
 
Andy said:
I would be disappointed if valuable, and normally extremely limited, interview time was taken up with discussing the past when the present need for people to actually take part wasn't adequately covered.
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Me too. I think the time to really rub people's faces in how badly we've been treated will be when we've got 25k viable participants in five minutes flat and the research team have revealed a bunch of genetic underpinnings for what we've been going through.

Meanwhile, the priority has to be getting people signed up, at speed, and in huge, huge numbers.
 
Andy said:
I trust that Chris, Sonya and Sian, who so far have been the ones from the DecodeME team to take part in interviews, could talk about the points you suggest, however I would be disappointed if valuable, and normally extremely limited, interview time was taken up with discussing the past when the present need for people to actually take part wasn't adequately covered.
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I agree, the present interviews are to promote the current research and I think the PR campaign has been great.

Obviously we do need a public analysis of what has gone wrong and acknowledgement of the harm done, especially given the risks of the same harm being inflicted on people with ME type Long Covid. However that is not the current job of those promoting DecodeME.

An aside, @Andy, go you know whether will get an idea of numbers responding soon or whether that will have to wait for processing responses?
 
Andy said:
I've not listened to that particular interview so I don't know what was discussed but the primary aim of any interview about DecodeME and the launch is to get pwME to take part. An obvious secondary topic that is likely to come up is why this research is necessary, and in the interviews that I have heard that Chris has particpated in he has talked about how seriously affected people can be with ME and that there are no effective treatments and not enough understanding of the disease process.

I trust that Chris, Sonya and Sian, who so far have been the ones from the DecodeME team to take part in interviews, could talk about the points you suggest, however I would be disappointed if valuable, and normally extremely limited, interview time was taken up with discussing the past when the present need for people to actually take part wasn't adequately covered.
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Thanks Andy. I agree recruitment takes priority, I was thinking about the next round of interviews after recruitment has finished.

I know Chris, Sian and Sonya are well versed on the subject. My suggestion was more about optimising the message so when the opportunity arises to discuss it the most can be made of the limited time available.
 
Peter Trewhitt said:
I agree, the present interviews are to promote the current research and I think the PR campaign has been great.

Obviously we do need a public analysis of what has gone wrong and acknowledgement of the harm done, especially given the risks of the same harm being inflicted on people with ME type Long Covid. However that is not the current job of those promoting DecodeME.

An aside, @Andy, go you know whether will get an idea of numbers responding soon or whether that will have to wait for processing responses?
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We do expect to be able to start advising people whether they have been selected to donate a saliva sample or not, and give a more general update, 'soon'; we are hoping for end of this week/start of next. I can say we are grateful to have had a fantastic response so far but, as we expected, we will need to keep up our recruitment efforts for some time. I have started seeing our ads on Facebook and YouTube which, as well as ads elsewhere, hopefully will help with that.
 
Why is saliva not wanted from some people?

Especially with the huge amount of funding.

Is this a symptom base restriction, viral vs non-viral onset, random sampling or what?

Why only mainland UK, the extra time in post for samples can't be the issue.

I have already withdrawn due to continual delays, irrelevant emails hearing about the research the team has done on other illnesses.

Action for ME bungling the admin with basic failures like failing to order enough envelopes was frankly not my idea of "news" about the project.

Already running years late and now the most important part is scaled back!
 
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daftasabrush said:
Why is saliva not wanted from some people?
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Because we are using certain research selection criteria to ensure, as best possible, we are taking samples from PwME, given the danger of misdiagnosis from GPs.

daftasabrush said:
Why only mainland UK, the extra time in post for samples can't be the issue.
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Because there are issues with the Royal Mail tracking process to the Isle of Man that Royal Mail were unable to resolve, and Royal Mail couldn't guarantee to us that there wouldn't be an issue with import duty on spit kits sent to and from the Channel Islands. So sadly we can't cater to those locations which is why I put mainland UK.

daftasabrush said:
Action for ME bungling the admin with basic failures like failing to order enough envelopes was frankly not my idea of "news" about the project.
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Lol, not sure where you got that idea from.
 
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Exactly what criteria are used for the saliva samples? I presume Post-exertional malaise but is it about meeting current UK NICE / SEID criteria, or ICC or CCC or any of the above?
A link explaining this would be helpful. I don't see the point in people doing questionnaires who are excluded from saliva samples.

Location wise the UK has many islands including (especially) the many in Scotland plus Angelsey, Isle of Wight, Scilly. I thought it was UK wide study rather than an English one.

I got the part about the cardboard box shortage from DecodeME, a message from Sonya on Nov 11 2021 - Here's a copy below.

Along with other predictable and avoidable problems, the cardboard box shortage and Xmas holidays were justifications for further delays. The cardboard box supply issue was in BBC news (red button version) the same week. A surprise to nobody - except possibly - Action for ME that the pandemic and leaving the EU might just cause delays.

Also sending emails that those with severe ME can't read without crashing.

(Highlighting below is mine)


Thanks for registering your interest in taking part in the DecodeME study into genetic causes of ME/CFS. We have an important update on the start date.

Quick summary: Recruitment will launch in early 2022 in two phases, starting in January. We will email your invite when you can take part and send reminders, so you don’t miss it.

Join our next webinar live on Facebook at 4pm today or register for the recording.


More detail if you have the energy:

We’re pleased to announce recruitment will start in January, and this will happen in two phases.

First, a test phase with randomly-chosen participants allowing us to check everything is working well and get feedback. We will then open full recruitment to everyone soon after.

This is a few months later than we hoped. We know this wait feels like a long time when people with ME/CFS have waited so long for a study like this to happen. Thank you so much for bearing with us.

We are committed to ensuring this study delivers to the highest standard possible, with maximum impact for people with ME/CFS. This means that some tasks have taken longer than expected, while other unexpected issues contributed to the delays.


We know openness is important to the ME/CFS community, so we have detailed some of the key reasons for the delays below:

Impact of the pandemic: this impacted supply chains, making it difficult to find key items like cardboard boxes for the spit kits, and made contracting times take longer.

Avoiding launching over the busy Christmas period: this is to avoid spit kits being lost in the post and managing holidays/office closures over this period.

People with ME/CFS are at the heart of this study, involved in every aspect of the design and development. We have adapted what we’re doing and sometimes slowed things down to be as inclusive as possible.

Sickness and impact of loss of loved ones: we have had a number of people from our small team off at times during the project.

Needing to work through more data protection issues than we anticipated to ensure your health information is protected to the highest level possible.

Hiring more staff for the project, ensuring they are fully inducted while working from home.


However, we remain confident of completing the study on time thanks to the fantastic level of support from the community. We’re excited about launching in the new year.

The good news is we’re making excellent progress, like getting ethics approval and designing the survey and spit kit that are as easy to use as possible for people with ME/CFS. We are also working with the 25% Group to organise support for people with very severe symptoms.

You will receive your invite by email as soon as you can take part. We will send reminders if you miss this.

You may see some people posting about their spit kit online who are part of the first phase before the full launch. If you are not part of this randomly selected small group, you will receive your invite as soon as the full recruitment launches.

We look forward to updating you at this afternoon's webinar - whether you've registered on Zoom, will watch on Facebook live at 4pm, or will view the recording in your own time.


Warmest wishes,
Sonya.

Sonya Chowdhury,
Chair of Management Group.
DecodeME.

Ps. Know someone else who would like to take part in DecodeME? Please pass on this link: https://www.decodeme.org.uk/#get-involved-form
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DecodeME delays - as mentioned above the already-delayed recruitment was due in early to mid 2021, it's now September 2022, another year plus of my life gone.
Of all our lives.
 
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daftasabrush said:
Exactly what criteria are used for the saliva samples? I presume Post-exertional malaise but is it about meeting current UK NICE / SEID criteria, or ICC or CCC or any of the above?
A link explaining this would be helpful.
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From the start of the project, we have supplied an FAQ on the website, this can be found here, https://www.decodeme.org.uk/faqs/

The specific entry for the exact criteria that is being used can be found here, https://www.decodeme.org.uk/faqs/wh...ally-what-about-the-oxford-and-nice-criteria/, where we explain that we are using IoM and CCC, which has been the case from the start.

daftasabrush said:
I don't see the point in people doing questionnaires who are excluded from saliva samples.
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We apply the selection criteria via a questionnaire, so it is impossible for us to determine who will or won't be asked to give a sample without the questionnaire being completed.

daftasabrush said:
Location wise the UK has many islands including (especially) the many in Scotland plus Angelsey, Isle of Wight, Scilly. I thought it was UK wide study rather than an English one.
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And I have explained why I used the term mainland UK. Mainland UK still covers Wales, Scotland and Northern Island, so DecodeME is obviously not an English only study. I'm unaware of the postage situation with any resident of any other island considered to be in the UK, and would encourage anybody who is in doubt to get in touch with us.

daftasabrush said:
I got the part about the cardboard box shortage from DecodeME, a message from Sonya on Nov 11 2021
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Yes, and as you yourself has shown I was right to do so. It was not "Action for ME bungling the admin with basic failures like failing to order enough envelopes" as you claimed, we told everybody that we were affected by "Impact of the pandemic: this impacted supply chains, making it difficult to find key items like cardboard boxes for the spit kits, and made contracting times take longer.", something out of our control as this was being sourced by our fulfillment company.
 
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I am sorry to read, @daftasabrush, of your negative experiences. So far I have had no problems with the DecodeME, and for me everything seems to have gone very smoothly. Obviously I don’t yet know if my DNA will be tested, but I am happy that DecodeME have established reasonable criteria for selecting whose DNA to sample.

It does seem a shame if those islands that are part of the standard UK postal area with no ‘customs’ issues are excluded. Having some years ago lived in the Western Isles, barring storms, post cost the same as on the mainland and often was faster and more reliable than services to more remote parts of mainland Scotland.
 
Peter Trewhitt said:
It does seem a shame if those islands that are part of the standard UK postal area with no ‘customs’ issues are excluded. Having some years ago lived in the Western Isles, barring storms, post cost the same as on the mainland and often was faster and more reliable than services to more remote parts of mainland Scotland.
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To be clear, I put mainland UK due to my knowledge of the issues with the specified areas. I'm not aware of any other such issues for any other area, so I'll now amend the detail in my original post to state UK (excluding Isle of Man and Channel Isles), instead of mainland UK only.
 
Update: Week One of DecodeME’s Launch

My summary of the key points:
  • Over 10,000 people signed up to take part in our first week with over 7,000 already completing the questionnaire.
  • There has been a delay in notifying all who’ve completed their questionnaire about whether we’re also going to ask for their DNA sample. If you have already completed your questionnaire, you will find out via email early next week.
  • If you haven't completed the questionnaire yet, you can take your time to complete it, there is plenty of time to do so.
  • Even if you are not asked to also provide a DNA sample, your contribution to the study is already invaluable and the information you provided us will help our researchers learn more about ME/CFS which will also guide future research.
  • You can help spread the word by visiting our Ways to Share page.
For the full update, https://www.decodeme.org.uk/week-one-of-launch/

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https://www.facebook.com/decodeMEst...yTL28bsoaeGo2gqKVQw52FGRYvDAsGpGGLEiQVNd9rL7l
 
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