#MEAction Volunteers-of-the-Month: MEpedia Stalwarts

#MEAction is honored to announce our volunteers-of-the-month, Innie and Pyrrhus, who are extremely dedicated contributors to MEpedia, our wiki encyclopedia for the ME and CFS community. 

Powered by #MEAction, MEpedia is crowdsourcing a knowledge base on the history, science and medicine with the goal to create a literature review so accurate, comprehensive, and technical that it can serve as a launching point for new scientists entering the field, as well as accessible and useful to patients at all levels of exposure to science. Our contributors include patients, allies and researchers within the ME community. 

Read our interview with Innie and Pyrrhus below, and become an MEpedia contributor yourself! While we are celebrating the work of our most recent editors, we must also acknowledge the volunteers who invested so much into establishing the foundation of MEpedia when it first launched in 2015, especially volunteer with ME, Ollie Cornes.

People like Innie (UK) and Pyrrhus are prime examples of what makes our #MEAction community so powerful!  

Innie talks about their experience contributing to MEpedia: 

 What made you want to get involved with #MEAction advocacy, specifically working on MEpedia? 

That’s a tricky question because writing content for MEpedia means being accurate and neutral even when there’s a topic you do feel strongly about. There’s no doubt that MEpedia can be used for advocacy – the most popular page is on the PACE trial – but I personally see it as a project to summarize and share information, and keep people updated on the rapidly improving science.

I actually became involved only when I became severely ill – MEpedia was one of the very few websites describing periodic paralysis in ME – something my neurologist couldn’t diagnose or even help with.

 ME has taken away almost all my hobbies, but I can still use the internet, and manage to read a bit. I find the research gives me hope, and there’s also a sense of achievement in being able to contribute to something that is helpful to many who remain ill.

 How long have you been contributing to MEpedia?

Since September last year, when I hit my most recent deterioration.

Tell us a little about the experience of this advocacy work. What have been the highs and lows?

The highs – definitely the many “look and feel” MEpedia changes – which all finally went live in June. This massively increased how usable MEpedia is on mobiles and tablets, plus introducing new layouts and the dark theme Timeless option for those who login. Much easier on the eyes, and no need to constantly zoom in to read the tiny writing if you use a mobile, as I do. It took some months of planning and teamwork, and then suddenly everything happened at once.

Another high is the new editors who have recently joined – especially Pyrrhus and Canele – who have been busy behind the scenes with improving/clarifying the standard everyone is writing to, which has helped encourage and retain new editors – and the increasing discussions about how to move things further forward.

 Lows – waiting for June’s changes to take place. Trying to edit content before the recent changes, with all the constantly zooming in and zooming out from my tiny screen. The times I’ve been too ill to take in any of the science, and when I’m too brain fogged I can’t even search for images to add later, and seeing other editors needing time away for the same reason. 

What is your ME story? 

I was extremely fit and well, and had a very busy life for many years before I got ill. A typical week would involve fairly long working hours in a demanding job, lifting free weights and running about 25-30 miles a week. That was 9 years ago.

I seem to be in the minority in that I started off mildly ill and continue to steadily deteriorate. I’ve heard it said that mild, moderate and severe ME are almost like different illness – that’s been my experience.

 I was diagnosed late – after 4 years my doctor hadn’t even done basic blood tests – and I kept trying to exercise for the first few years, not knowing it was making me deteriorate more quickly. I later realized my doctor was probably following the “medically unexplained physical symptoms” approach, which is based on the assumption that ME/CFS has no underlying illness process: offer reassurance, general advice that works for other illnesses, and avoiding investigating any symptoms at all. I really had to press for any kind of diagnosis. Then nobody seemed to know how to treat it beyond “pacing”, lifestyle management tips, and wanting to analyse my “illness beliefs”. I was even prescribed a wheelchair by a clinic that was not wheelchair accessible. Reading up on the science and asking others became the only options left.

Now that I’m severely ill, the neurological and muscle symptoms dominate – I’ve lost all ability to listen to music, I can’t sit upright for 10 mins so I don’t own a computer, and have so many sensory symptoms that I only occasionally manage to watch slow TV programmes. My speech regularly goes, I’ve become permanently housebound, and of course, a wheelchair user. I’ve collapsed and lost consciousness several times trying to walk across the lounge. It’s taken time to adjust.

What I can still do is read a bit, collect links of articles to read for my better moments, and do some graphics, and collect silly memes. I also manage to read – and re-read – some easy fiction.

What gives you hope?

The science, without doubt. Knowing that there are others fighting for fair treatment and research funding for us is also a great help.

 Any advice?

Trust your own experience and listen to your body. “Mind over matter” thinking has very real, harmful effects. I personally find a form of pacing called Energy Envelope Theory helpful. Also notice what – and who – is making things worse or better – you can use that knowledge to make small changes.

Secondly, if you used to be in good health before then it’s important to address your own internalized ableism. Wheelchairs are not a “bad” thing and wheelchair users don’t deserve to be looked down on. Overdoing it out of pride or stubbornness and avoiding asking for help can really backfire. Nobody chooses to be ill, but you can make your life easier by choosing to adapt rather than struggling to carry on as you did before. You are not superhuman – none of us are – and that’s OK.

Pyrrhus talks about his experience contributing to MEpedia: 

What made you want to get involved with #MEAction advocacy, specifically working on MEpedia? 

It’s tough being homebound and wanting to help out.  As a scientist, I found MEpedia to be an easy way to contribute to the community, while working within my limits, on my own schedule.

 How long have you been working on MEpedia?

 Just 6 months, but I feel like I’ve been able to get a lot done in that time.

Tell us a little about the experience of this advocacy work. What have been the highs and lows?  

It can be frustrating to be a new MEpedia contributor, as it takes a little time to learn how things work.  But once you get past this initial phase, it can be very rewarding work.

What is your story with ME? 

I guess health advocacy runs in my family.  My mother was heavily involved in advocacy for the developmentally disabled.  I became interested in HIV advocacy in 1989.  My volunteer work ranged from West Philadelphia to West Africa.  I fell ill with ME when I was a PhD student at Berkeley.  At the time, I had never even heard of ME, much less suspected that that was what I had.  The years following were an experience of ‘discovery’ that I think many people with ME could relate to.  Despite my biomedical training, I have learned far more about health care just by being a patient.

What gives you hope?

I am fortunate to have experienced a full remission in the past.  Having that past experience makes it much easier to envision a full remission in the future.

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