So everything seems to have taken off in quite a dramatic way over the last week or so. Ever since a few of us wrote about the possible reclassification of CFS, fibromyalgia and M.E. I’ve had the most hits on one day my blog has ever had. The World Health Organisation made sure the original article was taken down and went on a tweet spree to make sure everyone knew that this reclassification was NOT going to happen. But, the ball had started rolling and pyjama-clad warriors from all over the internet had started typing into action.
There’s now a Facebook page, there are bloggers and healthcare professionals and people who have chronic illnesses reading, and writing, and planning and talking. As I said in my previous entry, I’m a newcomer to this community. I don’t have a diagnosis yet. But I can read, and learn, and collate information. And help raise awareness of the issues that people with these chronic illnesses are having. Some of the things that have happened so far:
And why are we doing this? Although the WHO stated pretty clearly that they have no plans to reclassify fibro, M.E. and CFS, treatment of these conditions is far from ideal. There are still healthcare professionals out there who either don’t believe in these illnesses, or who believe they can be cured through therapy rather than medical intervention. I think that’s reason enough to shout about it.
There’s a lot to read, a lot to process and a lot to plan, and when it’s being done by people who have very limited amounts of energy it’s hard. But it shows that people are willing to fight. I’ve realised that my place in this campaign is probably going to be to blog, to educate myself and to post my own story. At the moment that’s the most powerful thing I’ve got.
[Edit 13th Feb: The WHO has confirmed on Twitter that they have no plans to reclassify the conditions, and that their site is a BETA site for health professionals to contribute to. However the work of Dr. Fink still persists and these misdiagnoses of CFS/M.E./fibromyalgia still occur and are still just as dangerous so I feel the point this blog post makes is still just as relevant and important.]
This afternoon, a load of posts appeared on Twitter about an article that had appeared on the Liberty Voice website.The article was titled “Fibromyalgia and ME/CFS Labeled Mental and Behavioral Disorders by WHO” and has, understandably caused a whole load of panic among the fibro/M.E/CFS community. The fight to get these diseases correctly classified as physiological rather than psychological has been long and on-going, and this seems a big step back in the wrong direction.
As I type, the article has been taken down – we don’t know why. This is a link to an image of the article before it was removed so you can read it, but the basic gist of it was that Dr Per Fink, a psychiatrist from Denmark, has classified fibromyalgia, CFS and M.E. as a “bodily distress disorder”. According to the WHO website:
“Bodily distress disorder is characterized by high levels of preoccupation regarding bodily symptoms, unusually frequent or persistent medical help-seeking, and avoidance of normal activities for fear of damaging the body.”
Bodily distress disorder is classified on the WHO classifications as a “mental and behavioral disorder”. This means that fibromyalgia, CFS and M.E. will be classified as something that has to be treated as a psychological illness, rather than a physical one. This is very problematic. Although psychological illnesses are valid illnesses that need to be treated correctly, treating a physical condition as a psychological one does not work. You cannot treat cancer solely by sending someone to group therapy, you cannot treat M.E. solely by sending someone to CBT.
Dr. Fink runs a clinic called The Research Clinic for Functional Disorders and Psychosomatics. On his website, he classifies conditions such as fibromyalgia, chronic fatigue syndrome and irritable bowel syndrome as “bodily distress syndromes”. He feels that these conditions are all the same thing, that if a condition can’t be diagnosed in testing (such as arthritis) then it is a psychological disorder. This clinic is currently responsible for Karina Hansen, a 24 year old with M.E. who was forcibly removed from her home to go to the clinic and get treatment.
Classifying genuine physical conditions as psychological is dangerous. It will mean people will get the wrong treatment and will not be given any opportunities to improve their condition. In a lot of cases, it will make their condition worse. There is a lot of discussion in the M.E. community about graded exercise therapy and how successful or otherwise that is, and I’m planning on compiling some info about that for another post. However, regardless of whether these treatments work for some or otherwise, treating a physical illness as a psychological one means people who have these conditions will be mis-diagnosed and mis-treated.
It also de-legitimises the people who have these conditions. Psychological illnesses are very valid illnesses of course, but to tell someone that the pain and debilitating fatigue they suffer from is a psychological problem is, quite frankly, offensive.
On her blog, fibrogirl has suggested some ideas for action:
“1. Research – pull it all together fully referenced in one place, including bloggers links etc
3. share our stories – our truths
4. Galvanise the online community, our friends and loved ones to make a bloody big noise – that is coordinated and focused
5. leave a reply here if you are willing to help. I‘m just one scared angry voice – I cant do anything alone. I’m not an academic, or even a very good writer. but surely if all the bloggers, academics, medics who believe in us and we make enough of a stink we might just finally break through and get what we deserve...a true diagnosis and treatment that helps us manage these disabling illnesses“
I totally agree with what she says. I am a relative newcomer to this community, there are many people out there who have been fighting this battle for years. However I feel I have a duty to educate myself on this, and to share the information I find out in a way that might make it easier for people to understand the problems we’re facing. I agree with fibrogirl – we need to step up the fight and start making a bigger noise.