Me and ME - #MillionsMissing

If you see a building lit up blue this weekend, it might possibly be for me. And for ME. Myalgic encephalomyelitis. We are the #millionsmissing from our own lives. And to know that we are finally - finally - beginning to be seen and taken seriously is something I'm still struggling to get my head around, to be honest.

ME affects your brain, muscles, hormones, gut, immune system, right down to the mitochondria in your cells (they're the little furnaces that fire up your body in order for it to function). All symptoms are worsened by post-exertional malaise - ie, if you overdo it, you know it with worsened symptoms that keep you on the couch or bed for days or weeks afterward. I have the constitution of a wet paper bag and so overdoing it can be as simple as going out for an hour or working an hour or two (but there are people way worse than me who overdo itmby getting up to go to the loo). Everything is kinda stressful, even if I don't want it to be. Managing my symptoms is a full-time job. There is at present no cure, though we're getting closer.

Each 12th May is ME Awareness Day. The last few years we have been showing how we are missing from our lives with a demonstration of empty shoes with no bodies in them. If you frequent Melbourne's CBD you might have seen them outside the State Library in 2016.

These are my hiking boots. I don't even *mind* if I don't hike in them. I would be happy just to go for a bog-standard *walk* in them, to be honest. My hiking boots are clamouring at the door to go for a walk my body can't handle. Also clamouring to go for a walk is the collar of a dog I don't own cos I can't walk it either.

Imagine you're a scientist doing a study on a particular illness. Your aim in the study is to determine what effect two treatment approaches have on that illness. When you set up the study, you set a scale to determine how sick the patients are when they begin.

But then, after you complete the study, you change your mind and you recalibrate the scale. The end result is that patients who you determined to be disabled at the beginning of the study have now at the end been deemed healed of their illness - even if they have actually worsened.

A study of this level of incompetence reads like something that would be published in a shoddy journal and quickly sink into oblivion. In reality, it was published in The Lancet in 2011 as the PACE Trial and its effects have reverberated around the world, to the detriment of the estimated 15-30 million sufferers globally of this illness. Here in Australia, it is hindering the up-to-250,000 sufferers from being able to access the disability support pension and the NDIS.

The study, known as the PACE trial, examined two therapeutic measures - cognitive behavioural therapy (CBT) and graded exercise therapy (GET). The study's findings have been the disastrously incorrect notion that the illness is a psychological one and all you need to stop being sick is the willingness to stop your false illness belief. You just need to realise that the reason you now stay sick is because you continue to believe you are. And now you need to begin to reverse all the horrid physical effects of months or years of lying in bed, and begin slowly but surely to restore your body by exercise back to a healthy state.

Problem is, it doesn't work like that with a disease of energy production.

It wasn't like the illness wasn't already on the back foot to begin with. Originally called myalgic encephalomyelitis, its name was changed by the US Center for Disease Control to chronic fatigue syndrome in 1989. The effect was the sidelining of a debilitating, multi-system disease off into a shonky psychological quest to malinger. And what better way to incur the disbelief of the medical and local community than to be a malingerer. After all, everyone's tired, right? Hurry up, get busy, get out of bed and get your hustle on.

The ideological austerity encouraged by the Australian government into the division of people into lifters or leaners has only made it harder for sufferers to get the help we need here. When you add the ringing medical endorsement of the PACE Trial to the mix, our quest has been an insurmountable mountain.

The ideas around ME are beginning to change, however. Finally, in the last few years, our condition has begun receiving some much-needed research dollars. Not much, mind you. Not anywhere near enough. But it's happening. Griffith University has identified a potential biomarker which, while not a cure may well point towards one but which will get the "in your mind" brigade off our backs and get us the financial support we desperately need. The suicide rate with ME is kinda up there. Appropriate support would help us all cope better. Last week, the Senate in Australia passed a motion to unify research and advocacy, as reported by Scott Ludlam the ex-Greens senator beloved of ME people because he got the bureaucratic ball rolling for us in 2015 and has gone in to bat for us ever since.

The idea that there may be a cure for my illness is almost impossible for me to believe. I don't know how to describe to you how terrifying it is to have an illness that has been keeping me housebound and to know that I am largely invisible to other people. Or how bizarre it is that I am a strong-minded woman but I am scared to re-apply for the DSP. I did it once before, several years ago. My brainfog was way worse then, so it took weeks and weeks for me to slowly fill out the pages and pages of paperwork. Sitting in front of the Centrelink-appointed doctor, who had the bedside manner of a thumbtack and who looked at me for a grand total of half a millisecond the whole time I was there, was an exercise in the psychological warfare that ingrained, invisibly, in the application for a social security pension and which is felt, palpably, by those daring to try. I didn't end up getting it anyway. Apparently my partner was earning too much money. Funny.

Now he's earning less I am eligible but I'm scared to apply. And I'm one of the lucky ones, too. I've had this thing for 18 years now. I had a diagnosis three years in, and that same doctor will be able to give me a report to accompany my application. (Once I work an hour to be able to pay for it, of course. Work which, while I'm grateful for my somewhat flimsy ability to do, causes payback that makes the hourly rate I charge woefully inadequate). It is possible, as someone with such a longstanding condition that I will be one of the lucky ones in my cohort who will be successful. But so many aren't, and if you happen to be an ME sufferer of a few months' or years' duration, you may well be encouraged to go and partake of some cognitive behavioural therapy (CBT) and graded exercise therapy (GET) to disabuse you of your false illness beliefs. Which may well cause your symptoms to worsen. The recommendation of CBT and GET for sick ME patients needs to be stopped. It's not helpful; it's harmful.

If you want to help, here are some ideas from MEAction:

Consider tweeting or emailing Dr Bastian Seidel, the President of the RACGPP - [@DrBastianSeidel]
(https://twitter.com/@DrBastieanSeidel) or email [email protected]

to "Please remove PACE material and harmful Graded Exercise Therapy recommendations from the RACGP HANDI guide for Chronic Fatigue Syndrome. See bit.ly/PEM-GETPrimer and bit.ly/2I8N09w #MillionsMissing #mecfs"

Or to Dan Tehan, Minister for Social Services - @DanTehanWannon or online form:

"Australians with ME/CFS are missing from the NDIS. Please add ME/CFS to List B of approved conditions. See bit.ly/2jzKE5A#MillionsMissing #mecfs"

Or Jane Prentice, Assistant Minister for Social Services and Disability Services - @JanePrentice_MP or online form:

"Australians with ME/CFS are missing from the NDIS. Please add ME/CFS to List B of approved conditions. See bit.ly/2jzKE5A#MillionsMissing #mecfs"

Thank you so much for reading!!