Webinar transcript: Q&A on the ME/CFS study

Our team answered your questions during our January 2022 webinar:

Sonya: We’re going to take some questions and answer, going to take some questions in a moment but I do just want to flag that we do have a frequently asked questions section on the website www.DecodeME.org.uk

So I’m now going to kick off the questions by asking Chris a question. This one came in by email in advance:
Are you only  looking for people who currently suffer from ME or will you also consider more who’ve suffered for years but have almost completely recovered?

Thank you Sonya. So we are looking for people with a clinical diagnosis of ME and those who pass two types of criteria: the  Canadian Criteria and the IOM Criteria one or the other. That means that people who are fully recovered, who don’t have ME symptoms anymore, but you will not be eligible for this study  but others should answer the question and see whether they come through what are scientifically quite strict criteria. I do recognize that relatively few people have fully recovered  and so relatively few people will not be eligible for the criteria for DecodeME. Thank you chris.

Question for you Claire:
What have you learned about communicating about and talking to people with ME since joining DecodeME? I know you talked quite a lot earlier on and you’re hugely experienced given your caring role, but are there are a couple of things that you think you’ve learned in addition to that?  

I think that’s been quite interesting because my daughter’s had it since she was 14, so I have always dealt with the communication. Anything has come through me and as part of the process what I’ve been doing is trialing some of our communications, some of our questions on her and really building up an understanding of what  she isn’t able to understand. Working with the Marketing  and Communications Group, I’ve really been able to see how how everything needs to be in bite-size pieces and how overwhelmed people are when they see a big bulk of text but I also want to just say as well that as a carer we are also overwhelmed by a lot of text. we’re not limited by brain fog but we are limited by headspace. We’re limited by time – we’re caring for our people with

ME and we’re often having to fight an awful lot, so it’s understanding that it is the people within the team have understood what it’s like to have ME but the people who are carers also understand what it’s like to care for people with ME and how  we might not be limited in our executive function but we are also limited in time so we need to make the messaging clear and we need to make it necessary and also to make sure that it’s in small pieces. I think that’s the biggest takeaway. Great, thank you Claire.

Is there anything Chris that you’d like to add to that?
I think the thing that I have learned most is what a co-production is. We are, as scientists here, not leading this project, we’re using the lived experience to benefit the science and harnessing it in ways I’d never seen before and there are benefits on both sides and challenges on both sides. But it’s just been an amazing experience and a learning experience for me, which i’m very privileged to have been part of.

Thank you Chris. Chris, i’m going to stick  with you for another question here and just a reminder to people on Facebook Live do post your questions. Dani’s passing those through and obviously you can use your question and  answer function in the webinar.

So Chris:
Will you be dealing with co-morbidities like EDS – Ehlers-Danlos syndromes and hypermobility spectrum 
disorders? So we absolutely we recognize that people will have [been] diagnosed [with] multiple different conditions and we will be capturing as many of those as we can in the questionnaire but we haven’t put a full set out for the reasons that Claire’s already told us about.  

But principally we’re interested in ME, people who have been diagnosed with ME and who are eligible according to the criteria. So, if the question does having fibromyalgia or other conditions mean that you cannot participate in DecodeME? The answer is no.

If you have a clinical diagnosis where ME and pass the criteria you’re in and we welcome you into the study.

Sonya: Great, thank you, and just to remind people that if you don’t get into the study, you don’t meet the eligibility criteria, [it] doesn’t mean that we’re saying you don’t have ME. [It] just means that you don’t meet the criteria  for this specific study but you can still give information and, with your consent, that can be used for future research.

I’m going to flip and take a question from Facebook. Claire: I think probably you can answer this one?
Just to double check, is the diagnosis of CFS acceptable? As the NHS in Liverpool do not diagnose ME.
Yes, so the reason why we call the study in all our communications is about ME, CFS or ME CFS or CFS ME, because so many different  people call it different things and, yes, if you 
have been diagnosed with Chronic Fatigue Syndrome then you meet the criteria in that sense, it – for us – it doesn’t matter what  it’s called you still have to meet the criteria for the ICC and IOM or whatever they’re called that’s not my area of expertise, i’m afraid but as long as you meet that that scientific criteria and that somebody somewhere has told you ‘yes, you have Chronic Fatigue Syndrome/ME/ME CFS or CFS ME’ then you’re included.

Great, thank you Claire. Chris – one for you – there’s lots of people saying thank you and really appreciating the Patient Public Involvement input and the impact that that’s had, so please forgive me I’m not going to read all of those out, but we do love hearing them.

This one’s for you Chris:
I have a very dry mouth and find it hard to give samples. Is there any way around this please?

Yes, so, we do need a saliva sample – we thought of alternatives but through PPI. We came to realize that saliva was the best option, although it’s difficult for some people and we realized that.

So in our documents and our paperwork we’ll give you it will contain some suggestions as to how you will be aided in providing  a saliva sample and you needn’t do this in one time slot. You can come back to it and and top  up uh time and again and once your saliva sample is in that tube it’s stabilized and should be good for for quite a while. So, unfortunately, albeit that we recognize what  the challenges are this is the way that we’ve had to choose to acquire your DNA for this study.

Thank you and i’m just going to…we’ve had quite a lot of questions around communication and kind of the eligibility and so I’m not going to kind of repeat those but…it’s a question here
Chris that asks about:
Whether the study will involve any clinical  investigations such as blood tests and we’re not we’re using saliva in the questionnaire? So what does that mean in terms of being totally  
reliant on subjective answers of participants to the questionnaire?

So that’s a brilliant question and one answer that I’ve seen  recently been discussed by scientists is that all symptoms are self-reported and we should not bend them just because it’s the lived experience of people. In fact we should celebrate people’s lived experience, rather than not believing individual self reports. In fact if you look at the evidence from genetics, the genetics tell you, tells me anyway, the self-reported observations made by people are at least as good as electronic health records. So we absolutely take on trust the self-reported clinical diagnosis of ME for good scientific reasons. I hope that’s clear.

Sonya: Great, thank you, we’ve had a number of questions from people saying that they need support in getting a diagnosis. They have many symptoms but they’re having difficulty in accessing doctors etc.

Action for M.E. hears that on a regular basis, as do some of the other charities, I know. Please do go to one of the patient support  charities and come to Action for M.E. We have an advocacy service, you can get support through the ME Association and some of the other charities that exist, so if you are struggling with the diagnosis please do come and utilize the support available by the charities and we’ll do our best to support you through that process. Obviously, if you then go on and get a diagnosis, you will be eligible to take part in the study.

Chris – another lot of science questions this time around:
Will you be looking at mitochondrial DNA?

We’ll be looking at every part of your genome, every corner, every chromosome, in and also the mitochondrial DNA. Absolutely I know that people think that the mitochondrion is an important element in why people have ME. The interesting thing is that a lot of the function for mitochondria doesn’t actually come out of the DNA of the mitochondrial DNA, it comes out of your chromosomes and, so, if we find genetic signals that indicate mitochondria, ironically it might be that we find them on the chromosomes which is not in the mitochondrial DNA. So, a scientific answer to a scientific question but, in general, yes we’re looking at everything. Okay, great, thank you.

Claire – question for you:
How will we know when we’re going to be part of the study?

Well, technically, everyone is part of the study as soon as they register. Everyone is. We consider everyone to be part of it at that point. What will happen is you will register, you’ll receive a link to verify your email and then you get to go through and answer a questionnaire about your symptoms and it’s when you’ve been through all that the algorithm will tell you at the end of it if you can progress through to the next stage. So it’s a little bit like ‘X Factor’ and we’ve made sure, as much as we can, that tone around that is important because we we’re not saying that you don’t have ME, we’re just saying that we have a lot of scientific criteria and you need to meet that. So you will find out as soon as you’ve answered the questionnaire but once you’ve done that, even if you’re not eligible to progress to the next stage and be sent your spit kit, you will still have the option of staying involved – receiving updates and also becoming part of other research studies that the DecodeME team will be filtering through and if, with your consent, putting your details forward for it – so even if you don’t meet the criteria at that stage, it’s not at the end of the line and you can still help after. That’s great, thank you claire.

Questions around whether or not people receive their individual personal DNA results. We’re not providing those results for you. There are other studies and ways in which you can get DNA results but that’s not something we’re offering.

We’ve got several questions about Long Covid and Covid.
So what effect will the presence of Covid in society and Long Covid have on this study? Will the two diseases be able to be untangled?
So, Chris, I’m going to start with you and then Claire if there’s anything you want to add or comment on then we’ll come to you next.

Chris: This is occupying worlds at the moment, so yes we’re carefully monitoring the impact of Covid, in particular, on the Royal Mail  because, you know, Royal Mail has slowed down in its ability to deliver. This has recently improved but it’s still a concern to us and so we’re paying attention to that. Now, closer to home, Covid has affected the DecodeME team with many team members needing to isolate, looking after family members, becoming quite unwell at times, so we’ve obviously adjusted our ways of working as best we can but it is challenging I must admit. Long Covid is something that we’re all very interested in from a scientific point of view i’m interested in answering the question whether the genetics for ME for people with ME who had ME before the Covid-19 pandemic overlaps or not with ME that are diagnosed because of Covid infection. Are they overlapping or are they different?

So we have approval from the funders to recruit 5000 extra people who have an ME diagnosis because they’ve had Covid infection and that’s above and beyond our initial plans and so we’ll have the power scientifically  to ask that question and hopefully answer it  and I wish in the future, just looking to the longer term, that there will be a similar type of study such as DecodeME but in the Long Covid arena and would be very happy to talk  to anyone about such prospects.

Claire – is there anything you want to add?

Just that, I think they said, what was it – that 46% of people with Long Covid will have ME?

But if they have Long Covid and they haven’t been diagnosed with ME then they need the diagnosis of ME, not just the symptoms. And, as you said earlier, if people are experiencing the post-exertional malaise part of Long Covid until they have ME then they need to be looking for that diagnosis in order to be part of the study. Great, thank you both.

We’ve got some questions around when we’re going to be launching outside of the UK.
We are going to need to have a replication study. That means that we need to actually increase the numbers of people and go from 20, 25 000 to 50,000 and beyond and rest assured we are ambitious. We want to see DecodeME grow, (but) our focus right now is getting the recruitment launch open for everyone and we will continue working with others and internationally to see if we can get 
DecodeME replicated and open for those people outside of the UK. That’s going to be really important in terms of being able to get the  numbers in so that we can validate any findings that we have, but also the more people that we have involved the more we’re likely to see the more detail we’re going to get the bigger the  numbers. So we are ambitious. You know, wouldn’t it be great to actually be able to have a hundred thousand, two hundred thousand and really start to learn some more about this illness? 

So Chris:
I understand this is the first genetic study into ME – which, I think might not be quite correct, I think there are other genetic 
studies, but this is certainly the largest – do you have any hypotheses that we may find that ME is a number of different diseases given that it is  often triggered by various viral infections?

The great thing about genetics is that we’re looking into every corner of our DNA and so we’re not simply going to be asking all of the questions that people are asking today, but we’re going to be able to ask the questions we haven’t even thought about yet.

So it is comprehensive. It is objective. We’ll be looking at over 20,000 genes with over 20,000 people. It’s not the first study but it is indeed the largest and, therefore, it will be the most powerful to answer all of those questions. So, of course, we’re interested in what people think as to what are the genetic risk factors for ME today, but when we look next year we may have a completely new hypothesis and if that is the hypothesis that has the greatest evidence that’s the one that should be pursued vigorously.

Thank you Chris. Got quite a few questions around how people can register and the questionnaire Claire’s answered that already  and the film will be available so you can watch that again and listen to it again but  you can also go to our website www.DecodeME.org.uk, which has lots of information there and does just give some responses in terms of the process. And we’ve got lots of questions we’re not going to get through all of these.

[When will we get findings / results from the study?]
So people are asking about timeline in terms of  findings for the study we’ll be concluding in 2024 and we will share information as soon as we’re able and we will make that accessible. We’ll avoid jargon. We’ve had requests around that. Somebody’s asked if anyone else is getting emotional I have to say I teared up as I was listening to Claire as a mum of the child with ME this study means a huge amount and I can’t tell you how privileged I feel to be part of this study and I’m sure that there are lots of others that feel the way. And, I have to say, the whole DecodeME team feel very emotionally committed whether they’ve  got a personal connection to ME or not. 

There are lots of questions around eligibility again please go to our website to find out more.
Somebody’s shared an address in  the question and answer. We’ll make sure either Issy or Dani capture that for us. Please don’t share your personal information in the Q and A. Give us a call at Action for M.E. and we can  captured for you and make sure that you get the questionnaire sent out if you have Severe ME. We just want to protect your data.  

And on that note we’ve got lots of questions about data privacy selling people’s data, so Chris:
Can you tell us a bit about how we’re going to keep everybody’s data secure?

We have to hold ourselves quite rightly to very high standards. In this study and beyond, the University of Edinburgh has data protection authority and we meet regularly to discuss data security. So we will hold everyone’s data very securely inside our firewalls with only a few of the DecodeME team having access to personal data. The data will be anonymized after that and I think one important thing to say is that DecodeME wish for the data to have a long-lasting impact so we do wish to share data but that’s anonymized data to bona fide researchers elsewhere who have ethical approval for their studies. However, I need to say this really clearly. If participants do not wish us to share their data with anyone then there’s a little check  box which says ‘No. I don’t want you to do that’ and that does not disallow that individual from participating in DecodeME.

It just means we won’t share your data and that’s your choice. And we support you as much as we support others who actually say ‘Yes. I do want my data to be shared anonymously without personal details being passed on as well.’ So I’ll stop there, there’s so much to say on that issue that we are covering on a day-to-day, weekly by week basis. But please be reassured that this is uppermost in our minds, particularly at the moment.

Thank you Chris.

A number of people have asked for the website address again so I’ve just shared that in the Q&A  for those on the webinar. It’s www.DecodeME.org.uk. Also we’ve had a request to slow down our speech, which is totally understandable. I think we’ve got so many questions we’ve been trying to work through them as quickly as possible and one thing we might consider is hosting a  webinar that actually where we slow everything right down and we take a few questions in advance and share those questions so you know whether it’s something that you want to use your energy to listen to.

We also produce a transcript of the webinars and we also produce the film, so you can watch it again afterwards and there are often short clips that are shared as well. So there are lots of different ways you can get information and apologies that we’re not able all in one go to meet everyone’s needs, but as Claire said we are trying really really hard and we will try and make sure that everything is as accessible as possible.

There are lots of people offering to share their experiences.

We’ve got a few questions about the criteria and what are the Canadian and IOM criteria?

Chris: the Canadian and the IOM criteria come from scientific publications which are quite dense, so it’d be very hard for me to summarize them to you today. My request to everyone is please answer the questionnaire as you would any other questionnaire truthfully and just give it a go and we’ll take your answers. And if you’re not eligible for the study as you’ve been told already today doesn’t mean to say you don’t have ME. It just means for this particular study we were not able to take you forward for it, which is why we’re aiming not simply to have interest from 25,000 or whatever people. We probably need double that number so that we can have 20 to 25,000 through the door for the study for the spit kit for the DNA. So I haven’t quite answered that question, because it’s really quite detailed. It sounds [like you mean] Chris there are several questions about what clinical diagnosis means if you have been told by a doctor, your GP or a doctor at the hospital that you have ME or CFS or chronic fatigue syndrome or MECFS or CFSME then complete the questionnaire. And our algorithm, as Claire outlined earlier, will work through whether or not you’re eligible for this study. It’s quite clever. I have to say in terms of I’ll ask you questions that will help work out whether you can participate. If  you’re able to participate, then we will send you a spit kit. You will know immediately after you complete that questionnaire whether we’re going to be sending you a spit spit kit.

Sorry, just a reminder if you’re over 16, you live in the UK, you have a diagnosis, you’ve been told by your doctor that you have ME, ME CFS, CFS etc, please sign up to our website. You’ll receive updates about what we’re doing, how things are going, and you will be told when we’re about to launch the recruitment. You will be first in line, which means you will be told before we go public and therefore you’ll have an opportunity to sign up. I’m very conscious of time and that we have lots and lots of questions that have come through. I want to remind everybody that you can go to our website www.DecodeME.org.uk where we have lots of frequently asked questions. There are also some really great blogs that some of our Patient and Public Involvement members have written and contributed to. There are science ones. There are ones about being part of the study. How we’re involving lots of different people.

I’m going to finish with one last actually/ I’m going to finish with two questions. The first one is:
Would you be able to see if there is a link with EBV, which is Epstein-Barr Virus, particularly after the recent finding in MS – will this show in spit samples?

Chris: It could be. We learned so much about Multiple Sclerosis from genetics from this kind of study, genetics alone did not provide the answers that we’re hearing about so recently about  Epstein-Barr Virus and Glandular Fever but it played its part and and I’m so pleased to see that such an advance has been made recently and this is the initial step that we need to take for ME and if there is an immune component to ME that plays through into the genetics. We will see it either initially with the 20,000 plus samples or in subsequent studies, but it’s  the right direction of travel.  

Thank you Chris.
Questions around whether or not you’ve registered and how you check, if you’re not sure you can always register again, but if you’re getting emails from the DecodeME team that means that you have registered for updates and we will tell you when you can register to participate in the study and start completing the questionnaire.

The last question I’m going to take, which I’ll respond to, is about the Priority Setting Partnership.

This is a partnership where people with ME, carers and clinicians have been identifying the top 10 research priorities and that’s been done through wide consultation  with the community. We will have the outcome of that in probably around April-time and we’ve already started to whittle down the number of questions and priorities. So the top 10 will come out in April and we will continue working with the government, with the funders and others to ensure that we see research programs funded. Not just DecodeME, but others. We want to see treatments. We need to invest in genetics, but actually we need treatments. We need improved care and we need the understanding of this disease that underpins it.

I just want to say thank you very much to my colleagues here.

I’m going to finish with one last question that’s come through from Facebook.

Will you be selling the [DecodeME] t-shirt Chris has on his desk?

Sonya: I think it’s a brilliant question and, actually, that is something we’re going to look at. I’m guessing that was a secret Santa present, Chris?

Chris: I’ve got the University of Edinburgh members a t-shirt but I can’t afford to buy one for everyone in the team because the team is huge. So, I think we should add to our list of things to consider once we’ve got a little bit of space and we’re about ready to launch is to think about whether or not we can have DecodeME t-shirts. Not to make money but actually it’s a really good way to advertise our study and to encourage people to join.

Sonya: So thank you to everybody that’s taken their time and their energy to join us. Whether it’s through the webinar on Facebook Live or watching later, reading the transcript later. We really, really value your involvement. You are part of the study just by being here today with us and joining us afterwards and if you know somebody with ME that hasn’t yet signed up please encourage them to do so. We’ll go through all the questions and if we if we can we will update our frequently asked questions on our website. So we will try and get those questions answered and we’re looking to hold monthly webinars, so there will be an opportunity to pick up some of those questions later.

Thank you so much to everybody and thank you Claire. Thank you Pippa. Thank you Anna. Thank you Dani and Issy who are working in  the background and, of course, thank you Chris.

Please get in touch if we can make the webinars or their recordings / transcript etc more accessible for you, or if you have a question not answered.

Read the rest of the webinar transcript: 
Launch update from Chris Ponting
Claire Tripp’s talk on Patient & Public Involvement
Anna Redshaw and Pippa Stacey’s short video talks
Your questions on the study answered

Full transcript and video