DecodeME - UK ME/CFS DNA study underway

Listening to it in instalments this morning. For anyone who finds certain electronic music tones physically painful, just skip the first 45 seconds (you won't miss important content). The music's hideous, at least to my autistic brain, but the spoken content is really clear at low volume and comfortable to listen to.

 

I agree, it was! I find podcasts so much easier to access than videos.

 

I very much enjoyed the podcast. I only listened to the first sixteen minutes. Thanks so much to everyone who is working on the DecodeME study. It's heartening to see expert effort put into something so valuable.

 

Splendid.

 

https://twitter.com/user/status/1407298570752045057

 

I gather that about 25,000 people have registered for DecodeME so far. That is great, but it makes me question the accuracy of the prevalence figures for ME/CFS. If there are 250,000 people with ME/CFS in the UK, would we not expect to have had more people registered by now? As with past petitions etc. we seemed to get up to 20,000 people quite quickly but numbers seems to have gone up very slowly since then. Everybody I’ve ever encountered with ME/CFS is absolutely desperate for high quality research. Offline I know, and know of, a few people, friends/acquaintances or friend of friends, who have ME/CFS. Some have no involvement with any groups or charities, but all knew about DecodeME before I contacted them and, as far as I’m aware, they’ve all signed up. I can understand that there will be some people who don’t yet know about it, or don’t want to be involved for different reasons but, if there are 250,000 people in the UK then I’m surprised that many more people haven’t registered yet.

This is not a criticism of DecodeME or anyone involved with it. I’m fully supportive of the project and have been very impressed with everything that’s been done to date – I’m just wondering if the registration numbers suggest there may be fewer people with ME/CFS than is generally suggested.

 

I didn't know about this study until quite a late point and I can totally see having missed it entirely had I not become housebound again by covid and using the computer a lot. I also used to avoid mention of ME/CFS due to feeling traumatized by people basically disbelieving me, so I was not looking at stuff about it online - quite easy to miss. I was never involved with orgs and charities & what they were saying esp as they were not saying very useful things when I got ill. I am sure there are a lot of reasons for different people. Would be interesting to see breakdown of how long people who have registered for the study have had ME/CFS for. I am sure we all go through phases of looking at more info/not looking at it so much. So I didn't find it that surprising? It's hard to hear about this stuff unless you are specifically looking for updates all the time.

 

My personal view is very much inline with Ariel's. I think that DecodeME has been incredibly successful in reaching a large proportion of those who are involved or directly connected to the ME/CFS community, a large part of that due to the willingness of the community to engage with DecodeME, but that it also shows how many aren't engaged with the patient community.

Although I believe that it started far earlier, I was only officially diagnosed with ME about 15 years ago, and then I only started getting involved with the online community around 5 years ago. I believe that there are large numbers of people with ME/CFS out there, who are just about well enough to continue to work in one form or another, but because of that they have no time or energy to spare for anything else, and it would not surprise me in the least if those represented the largest part of our community, and that they are not really represented in those that have signed up already.

 

I think that's more of an issue of no one outside the patient community caring very much. Lots of pwME go on a phase where they talk about it a lot, say on social media, but nobody cares, no one comments and they often get nasty comments to shut up about it.

Activism usually works but when the cause is unpopular it often backfires because exposing it only brings more hate and bullying while bringing almost no sympathy. This is an issue where unless people are affected by it, they can't even give it context. We just are that unpopular, that's the one victory of the BPS lobby, they really succeeded at getting the whole world to hate us. They have no other successes but on this one they exceeded all expectations.

 

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.

 

I know this wasn't said explicitly but I don't think people should be blamed for not engaging with the patient community much especially once they have been ill for some time - it's not necessarily most people's way of coping with chronic/life-changing illness and speaking personally I just wanted to take my mind off of things completely when I went online or in the times I had energy. Following what has happened in the story of ME/CFS is incredibly traumatic and we cannot really expect ill people to constantly expose themselves to this hurt, particularly when for the majority of patients they cannot do anything about it all and are completely powerless. Unfortunately this can leave them even more vulnerable as they may not have information to combat various medical prejudice/stigma/misinformation. It's not that people don't care - for example I used to be very ill and simply could not cope with reading about the horrors of PACE and BPS antics daily. When I felt a bit better, I just wanted to forget that I was really still quite ill, and carve a life where I did a few activities and didn't notice my illness insofar as I could.

I just wanted to post this comment as it can often feel like nobody outside our community cares about this issue due to lack of engagement, and without taking a view on that I wouldn't want to extend those thoughts to those within the community who do not engage for whatever reason. I am sure there are a lot of people out there who are desperate for good research, care very much about themselves but also about others, and have no idea about this study.

I am not sure what would have reached me when I wasn't regularly actively looking for the info. Probably promoted social media posts/advertising or news coverage (except I avoided it! I think it's probably obvious why I tried to avoid mainstream news articles about this illness over the years, often passed on by well-meaning family members!). As a patient community we have had understandable reason to be avoiding news about ME/CFS as it's often coming from a flawed and inaccurate perspective and is tough to read. A family member may have seen the a news article about a study and told me about it. Perhaps a video if it was going around enough - but many people are not very online at all generally and this wouldn't reach them. It seems fairly hard to reach people without relying exclusively on advocacy orgs and related pre-existing email lists. I find it really good and reassuring that there have been so many sign-ups, although more would be ideal obviously.

 

Maybe it's not possible to directly engage with many of them.

[Edit: Apologies -- just realized that I'm being bit repetitive, but there will be a new suggestion in the post below this one.]

I think many of them won't engage with social media networks on chronic illness either.

So what's needed is big public awareness of the study outside our networks.

Just some thoughts on top off my head how that could be achieved:

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?

 

I think for all those points it would be good to have different texts for different target groups, but in addition, perhaps there should be a text without a specific target group. I'll try to explain:

ad 5) -- I think that could be a text distributed by personal emails as well as by snail-mail/ postcards and also social media, and it should target both people that know nothing about ME/CFS (or, in the UK: that are misinformed about ME/CFS) and people that don't personally know people with ME.

A sugesstion to take into account the problem Andy and Ariel wrote about. Also the stigma and burden that comes with living with that diagnosis for both people with ME and their families, so that's likely that most people aren't aware that they actually know some people with ME.

Perhaps a headline along the following lines:

(First would need to have a number of how much people in the UK are severely disabled with a chronic illness)

[Insert Number] people in the UK live with a severely debilitating chronic illness. You probably don't know that you know some of them.(*) A genomic study could help find out what causes their illness -- a milestone for developing treatments.

Help the study to find sufficient study participants by sharing information about the DecodeME sudy as widely as possible.

--> Link & QR code [to a good introductory text on the DeodeME study webiste]

--> Link & QR code for people with ME that would like info about how to participate

(*) Thats's because ME/CFS is often misunderstood and people hide the illness. More information here [link or alternativly short text with references ].

---

I think it would be good to display the name of the illness not prominently, but as indicated above, add it under the call to help.

I'm not a marketing expert, but my hope is that a text along these lines just would need to be shared widely to reach sufficient participants. And also people living outside the UK could share it aiming at reaching people in the UK.

Perhaps also have an international version that uses the estimated number of people severely disabled by a chronic illness in the world.

In any case, the international version would need to make clear that only people in the UK can participate -- but that their participation will also help PWME all over the world.

(Edited to add suggestion to also use snail-mail/ postcards and to include a link for PMWE that would like info about how to participate)

 

....and highlight scientific credibility: always mention the University of Edinburgh and who funds the study + provide corresponding links

 

before the pandemic I woukd have stuck my head above the parapet and asked about a poster to put up in my GP surgery. It's harder to get in there these days than to wander into Fort Knox, though.

There is a small noticeboard on the pharmacy though.....

I wonder if online pharmacies & supplement companies, especially those advertising in ME charity magazines would consider hosting an advert for the study?

Also, a lot of libraries have disappeared around the UK, I wonder if Amazon would be prepared to host an advert for it that could pop up when someone searches for ME or CFS.

 

My old GP practice used to send out quarterly newsletters - they were keen on patient participation. Practices that do that might include a link in their newsletters?

My GP's website allows you to also request repeat prescriptions via their website - except for me, for some reason unknown to the practice (& me) their system locks me out, despite reset passwords, ID codes & whatnot. Practices who do that could have a link for those interested too.

That reminds me - is it patientaccess.com? The group that owns or looks after the systems patient use to make appointments etc, they also have an app and a website for health information. I wonder if they'd be prepared to host a link?

Also I believe there are several apps that ME patients use to track symptoms and activity. I wonder if they could place a link in an update?

 

What about the CFS clinics themselves? Whether they follow BPS ideology or not surely they can't deny that such a project might be useful - even if it was only in the hopes they're proven right?

Maybe asking the clinics to put a poster on their noticeboards for patients? Or post provided leaflets that go out with appointment letters?

 

Is it financially feasible to take out newspaper adverts? Print media still so dominant in the UK. May also be a good thing that people would see it who do not have the condition.

Also are the MRC and the NIHR doing anything to promote the study? This may not be their role but it's always good to highlight their involvement as well.