Closed UK: DecodeME updates, was recruitment thread.

This is good but I share @Tom Kindlon ‘s concerns. Unless something changes it seems likely that the targets won’t be reached.

I don’t like to be critical but I think it needs to be made clearer that DecodeME is still a very long way short of its targets for participants and that we desperately need everybody to do everything they can to try to encourage more people to participate.

I could imagine the some people would read the message above from DecodeME and think “great they’re nearly there and just need a few more participants”. To me the message needs to be “We’ve made a good start and have reached a significant target but we are still a very long way short and we desperately need your help to recruit more participants to make this study as successful as possible”.

Thanks again to everyone on the DecodeME team.

 

Note: if I say things like recruitment might not reach the target, this doesn’t mean I’m criticising the DecodeME team. Indeed they have been by far the most proactive research recruitment team I recall ever in the field.

I see recruitment for this study as requiring the whole community to get involved, particularly now when it looks like we will need to reach the harder to reach patients who might not be that active or connected to the ME community.

 

Good, that is something our team should have done. As a research team there are restrictions on whom we can contact and how; obviously it will depend on the individual circumstance but often it is not as simple as, for example, scraping a load of email addresses to send to.

 

I submitted my spit kit a few weeks ago! Been a bit of a mad time so forgot to update

 

I feel a bit useless on this, really. I'm not active on social media (I've done as much as I can, but if you never post no-one follows you), and outside of this forum all the active online and face-to-face networks I'm involved in are wildlife conservation or music ones. I think I've coped with lifelong illness by not being very interested in it, but the approach does have its drawbacks.

 

I've just posted it on my website, FB page of the website, FB group (and Twitter, although this one is very new and I don't have followers there yet as it is not popular here). I have a few members in my group who live in the UK and some visitors on my website from there, so I cannot contribute huge numbers but maybe those few at least sign up.

 

Apologies in advance, but anyone know the timeline for releasing the genetic data --- have they started analysing the samples?

 

Thanks - hadn't realised they'd hold off analysing the samples/releasing the genetic data until they had all of the required samples - although I'm sure there are good reasons for that.
Really highlights the need to get the volunteers/participants.
@obeat @Keela Too

 

The latest Be Part of Research email includes DecodeME, https://mailchi.mp/nihr/bpor-spring23

 

Tried the BBC, & larger Newspapers, here in Norther Ireland* - had a passing thought of Republic of Ireland --- Irish Times - Seanín Graham @Tom Kidlon
[EDIT - I live in Norther Ireland and at one point I bought the Irish Times, not that unusual --- ]

*"
Marie-louise.connolly [health correspondent - BBC], l.smyth [health correspondent - Belfast Telegraph], s.graham [Seanín Graham - health correspondent (?)- Irish News], newsdesk [health correspondent - News Letter], ME [cc - charity], Hope [cc - charity],



The:

• largest genetic study into Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS - Note 1) "DecodeME" is currently underway in the UK - 20K participants are required to provide saliva samples; currently approximately 10K samples have been collected.
• study also aims to collect 5K saliva samples from people with long covid; currently only a few hundred samples have been collected.

[Note 2]

ME/CFS:

• women are more likely to be affected than men - this study suggests a ratio around 3.2:1 [Note 3]
  
• onset is often around puberty and 30-39 years [Note 3];

Likelihood of recovery is low (5%); therefore, most people never recover their former health and many never complete education, are able to work ---. Prevalence estimates vary, but a figure of 200K is commonly quoted for the UK - around 6K in NI.

Many cases of long covid resemble ME/CFS [Note 4]; it is likely that, for many, the outlook is similarly poor.

DecodeME is a Genome-wide association study (GWAS). Studies of this type are commonly used to investigate diseases where little progress has been made --- dementia, --- you may recall the Ulster University's involvement in the GLAD (GWAS) study into anxiety and depression [Note 5]


Your assistance in promoting the DecodeME study into ME/CFS, & long covid, would be appreciated. I've copied to the two local charities who may be able to assist further.

Thank you in advance for your assistance & happy to discuss
Francis

Note 1
"Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, long-term illness that affects many body systems. People with ME/CFS are often not able to do their usual activities. At times, ME/CFS may confine them to bed. People with ME/CFS have severe fatigue and sleep problems. ME/CFS may get worse after people with the illness try to do as much as they want or need to do. This symptom is called post-exertional malaise (PEM). Other symptoms can include problems with thinking and concentrating, pain, and dizziness."
https://www.cdc.gov/me-cfs/
Note 2

Take part in DecodeME, the world’s biggest ME/CFS study.

It will collect information from tens of thousands of people with ME/CFS and analyse DNA to see whether the disease is partly genetic and if so, help pinpoint what causes it – which is the path to finding treatments.

The first step is to take the DecodeME questionnaire and then you may also be asked to provide a saliva sample. Both can be done from your home.

Your experience matters."

https://www.decodeme.org.uk/ways-to-share/

Note 3 - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4189623/
Note 4 - "ME/CFS shares symptoms in common with long COVID, a group of symptoms some people who have had COVID-19 experience for weeks or months after their initial illness" - https://covid19.nih.gov/news-and-st...might-help-others-post-viral-fatigue-ailments
Note 3 - https://www.ulster.ac.uk/news/2019/...and-the-genetic-links-to-mental-health-issues

 

Thank you for efforts.

Participants need to be resident in the UK. We don't have the resources to expand recruitment further.

 

Oh, that's good to see. Last time I looked, I couldn't find the study on their website, even searching for it by name. I think they only draw from particular registries, though, and there might be a technical reason DecodeME wasn't there.

 

Yes - thought I should have added a qualifier --- I live in Norther Ireland and at one point I bought the Irish Times, not that unusual --- as per much here its ----

 

Thought occurs that Republic of Ireland is running large budget surpluses* - don't supposed they'd fund 5000 ME/CFS whole genome sequences [£5 million]! Simon suggested this -- thread re suggestions on how to spend x million.

*https://www.bbc.co.uk/news/world-europe-65343497

 

What the Health Research Board funds isn’t really politicised i.e. politicians don’t decide what does and doesn’t get money. So probably the closed one could argue for with any likelihood of success is more money for health/medical research. And then that money could go to hundreds of major conditions, thousands of rarer conditions plus other types of research. Others are welcome to try. I have plenty of things to keep me busy.

 

Yea wouldn't hold out much hope i.e. even with long covid angle ---