Closed UK: DecodeME updates, was recruitment thread.

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.

 

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.

 

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?

 

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.

 

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.

 

https://twitter.com/user/status/1570450840913149953

 

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!

 

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.

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.

Lol, not sure where you got that idea from.

 

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)

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.

 

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.

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.

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.

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.

 

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.

 

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.

 

Thank you @Andy.

It is remarkable to see the level of patient involvement in progressing this research, thank you for keeping us here so informed.

Though I am purely a passive observer, I have a genuine feeling of ownership for this research and hope for what it might achieve.

 

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/

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

 

Pretty sure I know the answer to this but: have any of the existing clinics or services shown any interest in participating in this? Even if just in terms of putting out the message?