Some days I am struggling with seeing so many people moaning about things that I have come to champion and cherish.
But seeing others disregard certain aspects of a life lived completely indoors is reminding me of our immense resilience as people with chronic illness; people who have been confined to our homes for far longer than those who are moaning the loudest.
Our ability to mould and reshape a life where happiness, peace, contentment and gratitude are still well within our reach is admirable.
I feel like, while the masses are struggling to survive, we have long since learnt to thrive (or at least try to) within the restrictions placed on us by our own bodies.
I am proud of us, always.
There is no doubt that the circumstances of the last year have been beyond hard. I do not wish to invalidate anyone else’s suffering. I just think we, as people with chronic illness, do incredibly well each and every day to make the best of he hand we’ve been dealt.
If, like me, you struggle to process audio (or doing so exacerbates your symptoms) you might benefit from the below transcript of questions and answers from the most recent Decode ME Webinar.
I will share the transcript in four separate blog posts to try to reduce the amount of text to digest. Below is the first 15 minutes, starting with the first question asked.
Haven’t heard of Decode ME ? It is an incredibly exciting study into the DNA of people with M.E and it starts this year! If you have a diagnosis of ME, Chronic Fatigue Syndrome or ME/CFS you can still sign up (please do!) to become a part of it. There is an FAQ page on the website that may be helpful to you too.
Management Team live Q&A. 22nd December 2020
Introductions from Sonya Chowdhury (Decode ME Management Group Chair), Andy Devereux-Cooke (Patient and member of the Decode ME management team), Chris Ponting (Principal Investigator), Sadie Whittaker (Chief Scientific Officer at Solve ME)
Are you involving people with ME in the recruitment and analysis of the results?
Andy: What really delights me about this study is the fact that patients are involved in pretty much every single stage. We’re having the input of the valuable lived experience that they bring, so yes to [the question] are they involved in recruitment. Very much so.
We have individual members represented on each of the particular project teams, and well as the overall input from the PPI (Patient and Public Involvement Steering Group) which brings a wider input from the community into the study as well.
What sort of information can you glean from a saliva test?
Chris: We’ll be reading out the DNA that’s in the saliva. DNA is a chain of three billion chemical letters drawn from a four letter alphabet. So we’ll read out the DNA in multiple different places, almost a million places, and find the DNA letters that are more commonly in people with ME than they are in the general population.
And so these are letters that would pinpoint the genes that matter in ME that change the risk of people getting ME from, say, smaller to larger. And knowing what these genes are gives a much better chance that subsequent research will work out precisely what’s going wrong, and what kind of treatments or drugs are needed.
What do people need to do to participate?
Chris: Everyone who passes the criteria for the study will be sent a spit kit in the regular post. They’ll provide a saliva sample. It’ll be sent on for processing and after that the DNA will be read out. And to be absolutely clear, the data is going to be held really securely. We’ll pay great attention to that. And then use all the data in our analyses to find out which are these letters that predict whether someone, in a whole bunch of people, will have ME or not.
What’s involved in signing up and has Solve ME been involved in this kind of work before?
Sadie: We launched our registry back in May but kind of leading up to that point was the creation of the digital infrastructure. So the place where you go online to enter the data, and the development of the symptom tracking app. And we did both of those things with the community so we didn’t want to just create something and hope it was going to meet everybody’s needs.
Instead we wanted to work with researches, with clinicians, with patients, with carer givers, with individuals within the community to help us co-create the design and the data capture that was going to be involved with the registry. So we did that.
The process that an individual goes through is that you go onto a desktop portal on your computer and you enter some demographic information. So things like your age, your gender, things like where in the country you live. You fill out some baseline surveys (health surveys) and then you’re able to start tracking with the symptom tracking app, so that you can monitor your symptoms on an on-going basis. That’s kind of there model for the registry.
How things are going to work with the Decode ME study is that individuals will come into the system and fill out some information that’s specific to the study. And that’s been designed with the PPI (Patient and Public Involvement), Chris [Ponting] and the members of this organisation.
Then once you’ve enrolled for Decode ME there will be an option to participate in the broader registry. So to my mind, one of the lovely things about this relationship is that your data is going to be incredibly helpful to Decode ME but also has the potential to have this much bigger impact as part of a global registry.
When will genetic testing start?
Chris: So we’ll be asking people for their saliva sample from May . It’ll take some time for these kits to be sent out and for those to be returned and then processed, and then for the DNA to be read out. We anticipate that within six months of launch we will have enough samples, or at least we hope that participation will be high enough that we have enough samples to do the genetic analysis in its first form by the end of the year.
But of course that absolutely depends on recruitment; how many people sign up, how many people return their kits which by the way are quite expensive so we’d love it if people could return them if they request them. And the sooner we get those kits filled and samples received and DNA analysed, the sooner it is that we can do the computational work that will pinpoint these letters that matter so much for determining whether someone is more or less likely to have ME.
“I became ill with ME 30 years ago and was disbelieved by GPs, so I’ve never had a formal diagnosis. Will this matter and will I still be able to participate?”
Andy: First of all obviously I’m very sorry that you’ve gone through that experience because sadly that’s a common story. The disbelief part particularly. I’m sure many of us patients have had that same experience.
We do have to set certain rules, if you like, for the study for people to participate. So we are asking for all participants to confirm that they have had a diagnosis of ME, CFS, ME/CFS, one of the many names that are out there for the condition. So we are asking for potential participants to confirm that they have had a diagnosis of that, in order to progress into the actual study itself.
Obviously that’s not ideal from a patient point of view because of the issues that you raise but all research studies have to set inclusion rules (inclusion, exclusion) and this is one that we will be applying.
Chris: And if I may carry on with that. One of the outcomes of the study, I think we all hope for, is that there’s a greater awareness of the symptomology – what people experience in their lives living with M.E. Sadie may want to come in in a minute, but there have been occasions where by accumulating all of the data about your symptoms, and then going to your health professional and saying “These are those [symptoms]” and other people may have had diagnoses from similar symptoms that has triggered GPs and others to have a more favourable impression in terms of diagnosis for that individual.
I’m not a clinician, I don’t have expertise in this area, but I have heard such stories. And one of the outcomes, as I’ve said, I hope is that there’s a greater societal change, including in health care, as to what people with ME experience.
Sonya: I will just also say that Action for ME can provide advocacy support to help people to access healthcare. So if you are having issues with a diagnosis and you would like support, that’s certainly something that we can offer.
Part 2 (minutes 15-30) of the Decode ME Winter Webinar will be published as soon as possible.
Ambulatory wheelchair users exist. And I am one of them.
“The term refers to individuals who are disabled and use wheelchairs, but are capable of walking in some circumstances.”
At the moment, with this relapse, if I want to leave the house it has to be in a wheelchair. I’m not well enough to use my faithful mobility scooter but it’s ready and waiting for me for when things ease again.
I got my first wheelchair in early 2011. It was a no-brainer. I couldn’t walk to the bathroom. In 2016 I was ‘well enough’ to switch my wheelchair for a mobility scooter. In September 2020 I had to switch back.
I am rarely able to use my wheelchair at the moment. (Spoiler Alert: one needs a certain level of wellness to use mobility aids.) And I’ve never been able to self-propel (ie. I need someone to push me). But yesterday we managed a wheel around the block. I’m needing some time to readjust to it to be honest which is okay but more on that later.