My bestie and I had a full on moan fest this morning about our shared M.E. experience. She has been ill for 22 years and I have been ill for 24 years and in that time nothing in respect of diagnosing or treating our disease has changed. Absolutely diddly shit.
Actually, that’s not strictly true. Things have changed, they’ve just changed for the worse which isn’t the goddamn plan or what we ever expected would happen.
I know many of you think I’m negative, cynical or plain old disinterested when the latest research breakthrough bounces around the world wide web, but it’s simply that I’ve lived through nearly a quarter of a century of this stuff and trust me when I say it all quietly fizzles out never to be heard of again. Little pieces of the puzzle have been emerging for years, but like I said to my friend “all disease has one underlying cause. ALL disease. We know what Alzheimer’s and Multiple Sclerosis looks like on a scan. We know what cancer looks like in a petri dish, even though different cancers affect different organs and appear for different reasons. We know what diabetes looks like from blood tests. That’s because all disease has one biological cause and despite 30 years of looking we’re still nowhere near finding the cause of M.E. Absolutely nowhere near” which is a bloody depressing thought.
I spent 14 years on the board of an M.E. charity and during that time nothing changed.
I was an expert patient, representing severely affected sufferers in the setting up of ME/CFS clinics around the UK 17 years ago but it was all for nothing. My voice wasn’t listened to, and the only treatments offered by the Clinics were ‘Mindfulness’, CBT and physiotherapy none of which made a shit of difference to my friends who were bedridden, being tube fed, in excruciating pain, paralysed, having seizures and unable to speak or tolerate daylight. The situation hasn’t changed in any way during the intervening years and my local ME/CFS Clinic has since closed. There is still, all these years later, no effective treatment for any aspect of M.E.
I took part in the PRIME project, and the CHROME project which followed severely affected sufferers over a decade – the information from both seems have disappeared into the ether. I took part in the Lost Voices book, which told the stories of severely affected sufferers but was only read by patients, and some of my friends took part in the Voices from the Shadows film (Jen Brea’s Unrest isn’t the first great film to be made on M.E.!) which caused a stir at the time and then was very quickly relagated to history.
I did numerous media articles and interviews alongside many other sufferers and, to an extent, the publicity worked in as much as at least most people have now heard of M.E. but it’s still the butt of jokes, we’re still thought of as lazy idle scroungers and all the lay public really know about M.E. is that it’s an illness that makes you feel tired a lot. Yeah, that’s it – spot on. Mind you, the situation really isn’t helped by the myriad of patients who appear in the media with stories which tell how they’ve been “really ill” for 2 years, but then ate a paleo diet and took some probiotics and now they’re back at work and feeling great. Yeah, thanks for that publicity from people who clearly didn’t have ME to start with.
The biggest change I’ve seen over the years is the watering down of the diagnostic criteria, which makes me so angry I could spit and the introduction of the name CFS, which trivializes my disease. I am not chronically fucking fatigued – I nearly died for god’s sake and no-one dies from being tired. The diagnostic criteria no longer stipulates that “activities of everyday life are reduced by 50%” which means people can now work full time and still have an ME diagnosis, a situation I find unbelievable, and “fatigue” has replaced “malaise” as the number no.1 critiera. Really? Fucking REALLY?! I’ll make sure to tell my throat that when I’ve spent too long on the computer and suddenly feel like I’ve got tonsillitis (my M.E. warning sign that I need to rest) or when I start to speak like a stroke patient because my brain has forgotten how to engage with my mouth.
We’ve had enough time, now, to have made some kind of breakthrough but it hasn’t happened. In the UK the psychiatric lobby is still going strong and the only official treatments offered to M.E. patients are graded exercise and cognitive behavioural therapy which are about as much fucking use as a chocolate fireguard. Where has the decades of research and lobbying and activism gotten us? No-where it seems. We were fighting the psycho-social view of M.E. back in 1996 and we’re still fighting it more than two decades later. When is it going to stop?
The answer to that question, I told my friend, is not until there is a diagnostic test for M.E. It’s the only thing that will ever shut the UK’s psychiatric lobby up or convince the public we are genuinely and physically ill. All the protesting in the world is a total waste of time, money and energy because until we can prove that M.E. is a physical disease by some kind of diagnostic test no-one is ever going to believe us, no matter how loudly we shout. And being as though we are no-where near knowing what causes M.E., let alone having a simple diagnostic test, we might as well all just sit in our beds with a brew watching the X Factor. Which is precisely what I plan to do now I’ve got that little rant off my chest.