I get asked what it was that enabled me to see progress* with my health.
Honestly? I think it boiled down to three things:
• Luck • Privilege • Circumstance
The conditions within which I became ill with M.E. were as favourable as they can ever be.
• I had just graduated from university ergo my education was unaffected by my illness. I didn’t have to attempt to study alongside my new health restrictions.
• I had never had my heart set on one career and had not yet entered full-time employment. So, although devastated that taking over the family business wasn’t ever going to happen for me now, I didn’t experience the loss that others have.
• I was living at home and so had no mortgage to think about or bills to keep on top of.
• I became ill with severe M.E. from the get go. So unlike many others, I didn’t have to face the impossible task of trying to hold down a job because the choice was made for me. There was no pushing through. I couldn’t lift my head off my pillow.
• I had no dependents and no responsibilities. No children. No pets. Only myself to think about.
• I had the full support of my family, particularly my mum.
• My mum’s advocacy and understanding of M.E.
• I was diagnosed alarmingly quickly and seen by a CFS/ME Clinic within six months of my first symptoms. The clinics aren’t great but I didn’t have years of waiting and wondering like the majority of people do.
My point is, be careful whose journey you compare yours to. Because the circumstances are likely to be very different from your own.
All that and I’m still not better than this?! Yeah, sorry about that.
Just go a little easier on yourselves, that’s all.
Here is the final part of the hour long DecodeME Winter Webinar from December 2020. To catch, the first 45 minutes are available in 15 minute sections at Part 1, Part 2, and Part 3. Future webinars will be transcribed automatically.
Do you have a provisional idea of which genes may be involved?
Chris: I don’t. And that’s the point, in that I’m not prejudiced as to what the outcome is going to be. With a student and Simon McGrath, we recently reviewed the genetics evidence for factors changing the risk for ME and we drew a blank actually. There was no firm evidence for any gene and that publication is available for anyone to read. I’m pleased that we are unprejudiced in our approach because that means that we will be looking at all of the parts of the genome that no-one has ever looked at before. That will therefore give us the chance of finding out new biology that perhaps others in research are beginning to work on already. And they will then be drawn into ME research and they will be the ones to make the fundamental findings that will be so important to all of you.
Sonya: It’s also worth adding that this is the largest, the biggest, study of this nature. 20,000 people. So we need to sign up as many people as possible. You’re going to hear me keep plugging away saying “Please sign up for updates!” We have around 23,000 in the U.K. over the age of 16 who’ve already signed up to say they would be interested in taking part, but we know we’re going to need a lot more because not everybody will meet the very specific criteria for this study. And not everybody will be in a position to return their ‘spit kits’ however much Chris pleads for people to return them! So we do need to get as many people signed up.
Are there any plans to cross reference the DNA findings with other disciplines that have already made advances in their understandings of DNA and disease presentation?
Chris: Yes, that’s exactly what we’re going to do. So each type of disease will have a different genetic signature, and that signature will go up and down as you walk across the genome. And so we can compare these signatures across different diseases – from ME to Multiple Sclerosis or other autoimmune diseases, or risk of cancer, or absolutely anything. That will be able to tell us whether there is any genetic concordance (agreement) between the reasons why some people have ME and other types of diseases, or not. It could be that there is another disease that is thought of as being quite similar but actually we can say that there’s no evidence for that. Sometimes finding the lack of evidence is as important for honing your future research as finding the evidence.
Is there any way we can help the study finish quicker by volunteering?
Andy: Yes there are a few ways. At the moment we’re exploring the idea of people who would work to actively boost our reach on social media. Tentatively we’re calling them Social Media Champions. One aspect that obviously we’re aware of is that the more severely affected of us patients may be keen to be involved, may go through the recruitment process/the selection process and be accepted as a participant and be sent a ‘spit kit’ but obviously may struggle to return that. The finer details are yet to be worked out, but what we’re keen to do is to be able to connect with local ME groups who may be able to offer their help to participants to get those kits sent back. Chris is keen to get them back because of the cost but we would like to enable as many participants, and particularly the severe patients who tend to be even more excluded than those of us ‘less’ affected. So there’s that potential route that people can help out with. To go back to an earlier point, sharing and liking on social media can’t be stressed enough. Although it seems like something with little impact, Twitter, Facebook, Instagram all have algorithms that constantly monitor how much interaction there is with posts, and those figures affect the distribution and reach of those posts. Just by liking posts, interactions, shares, the occasional positive comment underneath is always appreciated by our social media team, you boost the rankings of those posts up in the algorithm. So even things that might seem small can make a big difference.
Sonya: We are working with a Digital Marketing Agency called Itineris. They’ve helped us set up the website and we’re going to be working with them, the Patient Public Involvement group will be working with them, to help us target as many people as possible and get the study and the branding in front of [potential participants]. We’re also looking at something called a Participant Gets Participants scheme. So if you have taken part you actually recommend us to somebody else and encourage them to take part. We’re also thinking about how we can ask family and friends, as Champions, to make people they know with ME aware of the study. We will be looking at posters and that kind of thing, but I think the question earlier around how has covid affected this study, has meant that we are now thinking more broadly about how we can recruit people because not so many people are in libraries and doctors surgeries and those kind of things. We did also set up a consultation, I think it’s possibly even a year ago now. We had over 1000 responses; people giving ideas about what we could do to recruit people. So we are working through that at the moment to help inform our recruitment strategy.
If I match the specific study criteria, what will happen next?
Chris: If someone matches the criteria, we’ll let you know by email, and you will be sent a saliva sample kit. It’ll come to you quite quickly. We’ll ask you to donate a very small amount of saliva. There’ll be an instruction leaflet to go with it. And then you pop that back in its box, and back in the post. And that’s it. You’re done. Once you’ve completed the questionnaire, you’re a member of the DecodeME study, you get your box, you provide your sample, and you’re done.
How confident are you that you’ll hit the recruitment target?
Sonya: I’m going to say we’re confident because that’s part of the work that I’m involved in. And we’re confident that because of the number of people that have signed up for updates and indicated that they would like to take part. But as we said earlier on, we still need lots more people to sign up. The sooner people sign up, the sooner we can let you know when the study opens, and the sooner we can get the ‘spit kits’ out, the saliva back, and the analysis can start. So please do sign up if you haven’t already.
How has the study been received by people with ME? And by other Researchers?
Andy: I’m not sure of the right positive word to use to be honest. Frankly it’s game changing. So the fact that the funders recognise the need for this study. And without getting into the “This kind of study should have been done many, many years ago”, the fact that they recognised that this study was necessary and that it needed to be funded and they did fund it, is all part of the game-changing aspect that it has. I think those of us in the patient community who are aware, particularly of the background, of what has gone on previously, recognise what a big deal this is. And that it stands a chance, a very good chance, of providing a huge wealth of information that can take this field a giant step forward. The size of this study is on such a larger scale than previous ones. No matter how good the science previously was, it was hard to extrapolate the results onto the wider population. Here, with 20,000 participants, we get a far better look at what the population actually consists of.
Chris: There are trends even in science and if I was working in Multiple Sclerosis or aspects of cancer, my fellow Researchers would go “Okay I understand.” Until we had the award from the MRC and NIHR I’m not sure there was a great understanding that this was something worth researching. Now with this award it is clear to everyone, Researchers and others alike, this is definitely worth researching. Secondly, I’d like to say that the funders know this. They’ve known for a long while. But a major reason why this was funded, beyond the science, was the involvement of people with ME. Without that involvement it wouldn’t have been funded. So it is exactly the right time, with the right people, to do the right thing. And it’s telling people around me in scientific circles that this is an interesting, a scientifically interesting, and important area to study.
What if more than 20,000 apply and are eligible? How will you choose who participates, or will you test more than 20,000?
Chris: The people who provide their samples earliest will be analysed first. If we are able to eke out our money and go beyond 20,000 of course we will. It is a numbers game and we will optimise that as best we can. If we have more than 20,000 of course we will look out for other funds to enable all of those extra people to be studied.
Sonya: So there really is an incentive to sign up early and get to the front of the queue there.
Sonya: I just want to thank Chris and Andy and Sadie who’s now left us for your time this evening. And for all of you watching. You can go to the website https://www.decodeme.org.uk to find out more information. We will update the Frequently Asked Questions on occasion. We’re not able to answer every single specific question as it comes in. I hope you understand that we are working hard getting the Ethical Approval in place and everything in place so that we can open in May as planned and not experience anymore delays. So please bear with us and do understand if we’re not able to answer everything. But we do need you. This is a study that is about people with ME, working with people with ME, to make sure that we kickstart research in a way that’s needed. It may be later than many, many, many of us will have wanted but it is happening now and it can only happen if you support it and take part.
I’ve never done such an audacious post like this before and I feel a bit icky about it. I actually can’t stand the things – another person, even with the same diagnosis, can never advise someone else on how to live their chronically ill life.
But there were more than a few of you who have asked or said you’d be interested to hear what my personal “Top Tips for living with M.E.” would be.
Please know that I can only share this from my own experience of M.E.
It is with some discomfort that I share this post.
• Get cognitive rest. Even just five minutes here and there of sitting and concentrating on nothing but your breathing.
• Know that you will repeatedly go through The Grief Cycle. Don’t beat yourself up for that. Chronic illness is a big deal. It’s hard. Of course we will struggle with that at times.
• Find the balance with diets and supplements. There may be things that do alleviate some of your symptoms, but when we get so little pleasure from life I refuse to cut out chocolate completely just because it ‘might’ make me a tiny bit better. That doesn’t mean I don’t want to make progress with my health.
• Do not do Graded Exercise Therapy. The PACE Trial that is largely responsible for GET being recommended as a treatment for ME/CFS is surely one of the greatest medical scandals of our lifetime. The draft NICE guidelines have finally removed the recommendation of exercise for people with M.E.
• Work as a team with your body, not against it. Fighting M.E. in the conventional sense that society tells us to fight illness has never ended well for anyone I’ve met in the past 10 years.
• You can do everything right and still get energy dips and crashes throughout your day. That’s because you are poorly! It’s not a personal fault or flaw. Doing everything right will lessen some things but not all.
• You are poorly. I’m sorry, but you are. Frustrations will be par from the course but letting go of comparing yourself to your pre-illness self will bring more peace. “But I used to be able to do X, Y, and Z!” Okay…well I used to be a toddler…things change. You get me?
• Rest. Seriously schedule it in.
• Wherever possible, stop while you still feel able to carry on. So if you’ve just folded a load of washing and still feel like you could possibly maybe also do the dishwasher, allow yourself to stop. It can wait. It will still be there to unload tomorrow! (This is Pacing – I’ve spoken before about how Pacing is a privilege and not something everyone has the luxury of being able to do.)
• Don’t waste money on ‘treatments’ like The Lightning Process. Sorry not sorry. I am very strongly opposed to such ‘treatments’ preying on vulnerable people and then accusing them of not trying hard enough to recover. Get in the bin you dreadful excuse for a human being.
• Delegate wherever possible and accept help. Which I think are super brave things to do. Of course we want to maintain some level of independence but if we kick too hard in an attempt to do everything ourselves, we could lose the little bit of independence we still have. (Again, having help this is a Privilege not everyone has!)
• Be kind to yourself and be your own best friend. It’s not your fault that your body is no longer functioning as you’d like. You’re not going to get it right every time. Nobody does. Go easy on yourself.
• Know that Cognitive Behavioural Therapy (CBT) will not fix your symptoms, only help you come to terms with your new life.
• Be assured that although life will be different and it will be hard, it can also be so, so good.