Closed UK: DecodeME updates, was recruitment thread.

Andy said:
"20,000 #pwME have completed the #DecodeME questionnaire, providing us with a wealth of information about lived experience of #ME/CFS to understand more about the illness. We still need more participants! You can still take part: shorturl.at/tyESV"
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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.
 
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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.
 
I agree everyone has a part to play definitely not just down to the project team to communicate. Need to get the message out to people not actively engaging with ME community. ME organisations need to reach out to local radio & press contacts people don’t all use social media.
I emailed local Healthwatch links to Decode website asking them to post on social media. When I followed up a month later they said they have contacted Healthwatch national comms to see if they are allowed to post something about DecodeME under their comms criteria :wtf:
 
NelliePledge said:
I emailed local Healthwatch links to Decode website asking them to post on social media. When I followed up a month later they said they have contacted Healthwatch national comms to see if they are allowed to post something about DecodeME under their comms criteria :wtf:
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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 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. :rolleyes:
 
In my area I have mentioned before there is no ME community. Hopefully later this summer I will be using DecodeME trying to find people with ME in the area as a hook to get a message out in the wider community, ideally local paper and radio. Maybe that will be the start of an ME group.

I am going to my gp surgery’s new patient participation group on Thursday. I want to get to know the practice managers.. the aim apart from feeding in to general service issues is to suss out whether I can get some publicity in the surgery and on their social media for both DecodeME and ME Awareness day.



I’ve also written to the CEO of the local Healthwatch to highlight the lack of provision locally for people with ME and ask for advice on how to pursue the implementation of the NICE guidelines. Need to try to find allies.

eta didn’t make it to the surgery PPG I didn’t have capacity to drive due to poor sleep. I think I’ll book a phone call with the organiser.
 
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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.
 
FMMM1 said:
Apologies in advance, but anyone know the timeline for releasing the genetic data --- have they started analysing the samples?
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Recruitment and data collection are planned to continue well into 2024, I think. I don't imagine they will analyse the genetic data until they have it all, so I'm guessing the first genetic paper might come out in 2025.
 
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Trish said:
Recruitment and data collection are planned to continue well into 2024, I think. I don't imagine they will analyse the genetic data until they have it all, so I'm guessing the first genetic paper might come out in 2025.
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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
 
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],
cleardot.gif



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
 
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Andy said:
Thank you for efforts.


Participants need to be resident in the UK. We don't have the resources to expand recruitment further.
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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 ----
 
Tom Kindlon said:
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.
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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
 
FMMM1 said:
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
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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.
 
Tom Kindlon said:
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.
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Yea wouldn't hold out much hope i.e. even with long covid angle ---
 
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