ME. The fashionable illness
'With every other disease you get kindness and sympathy, but though Lynn was very frightened and we were desperate for help, all we got was accusations that she was pretending.'
Cruel, if well-meaning, experiments were conducted on her in hospital to 'force' her to admit she was making it up. Nurses left her unattended for hours in the theory that she would get up to use the bathroom. This had humiliating results.
'One consultant was convinced Lynn was orchestrating her spasms at certain times of day so they took away her clock, the radio and TV and the nurses lied to her about the time. She still had the attacks at the same times.'
'They abused her verbally, calling her a "silly little girl", saying "Of course you can do it" and telling her to fetch things herself. Sometimes she was in such pain and felt so terribly ill she would ask us: "What is going to happen to me?"
'For two or three years afterwards she would wake up screaming from nightmares of things that happened to her in hospital. She is still scared of doctors and nurses and I won't have anything to do with anyone who doesn't believe in ME.'
This is how we treat sick little girls in 21st Century Britain. Read Lynn Gilderdale's story here. I challenge you not to feel angry at this story.
13 comments:
Disgusting. My best mate has ME. Don't think I've mentioned it before. The whole issue fucks me off.
Thanks for linking to that. I have a mild version; when I read that I realised just how mild. But I encounter people eg at work who look at me in contempt because they think I'm malingering.
Sometimes I get a bit pee'd off that I still have to work at seventy, then I read about this and see how fortunate I am that I'm still able to work. And since what I do is house renovations, doubly lucky, I do get more tired than I used to though.
Let's hope that medical science will find a cure, [for ME, not work!] once they start to take it seriously that is.
[Comment didn't publish, hope it doesn't appear twice if I re-do it]
It sounds so unbelievable! Thanks for the consciousness raising.
(Ligneus: you are the youngest seventy! You're awesome.)
That's a fascinating article - poor woman. A couple of things sprang to mind though. Yes, the condition is often approached as a "psychological" one, but that does not mean that the sufferer is making it up, pretending, or pulling a fast one, and can be chivvied out of their symptoms. The point about ME being caused by "a virus" doesn't mean there is an ME virus, it means that ME usually starts at a stage when the body is recovering from another virus or illness. There is no way to positively test for or identify ME, except to diagnose via process of elimination. I know that ME can be successfully treated and managed via cognitive behaviour therapy, which places it very much in the category of mental illness. I wonder if attitudes to ME now are similar to the way that depression, or anxiety disorder, (or any other mental health problem!) might have been viewed 50+ years ago.
Rachel, the scientific research about ME in recent years tells us that its symptoms are due to damage commited somewhere along the neuro-endocrine-immune spectrum, causing massive physiological upheaval and preventing the body from maintaining homeostasis.
It's no more psychological than Parkinsons or MS and can't be cured by CBT. It's not a mental health problem, people with ME suffer from severe immune and neurological dysfuntion. This is why the treatment of this little girl is so inhumane.
My info comes from experience, and also from the Action for ME website .. amongst others! Again, why does the word "psychological" seems to make folk jump out of their skin with indignation? ME has psychological elements in it's cause, symptoms AND management. It has no cure, but can be managed. This places it in a very different league to Parkinsons or MS. But if the main point here is to be angry about the cruel and stupid treatment of this woman - then I'm totally with you. But the point is to get angry about people's unevolved attitudes to the illness, not to argue that using the word "psychological" means that the sufferer is making it all up, or that they are mad.
Yeah, I'm getting you with the "psychological" doesn't mean the sufferer is making it up, or indeed malingering which is the main accusation. But ME doesn't have a psychological componant other than perhaps reactive depression, like a lot of other serious illnesses.
There may be a psychological componant however to those who suffer from the British definition of Chronic Fatigue Syndrome, which is loosely speaking those who suffer from constant tiredness and fatigue for whatever reason. CBT can help them I dare say, along with graded excerise.
Unfortunately, people with ME have been lumped in under the umbrella term Chronic Fatigue Syndrome and a great deal of damage has been done.
I'm sorry to learn anyway that you have personal experience of this. Something we sadly have in common.
We will have to agree to disagree on some points. Hey - I didn't mean to mislead you about experience. I haven't had it personally, but ME comes into my orbit at work quite a lot and has done for years. I am sorry about your experiences. I had a long conversation with some ME therapists and doctors recently - the physical, psychological and even (whisper) spiritual aspects of the whole thing. There is a kind of traditional and old fashioned approach, to separate the mental and physical aspects of illness/disorder completely: Mental illness? It is all in your mind and cannot be seen (and therefore is more mysterious and might even result in the sufferer being blamed for it anyway). Physical illness, is clearly visible and transparent, much more straightforward. Neither state having anything to do with the other .. However more people (incl me) are seeing that physical disorder and mental health disorder sit together in a loop, or on a spectrum. Body and mind together. Inextricably linked, anyway. So, for me, ME sits bang in the middle somewhere in the loop, in a tangle of the psychological and physiological in it's original cause and eventual symptoms.
Well, bugger it, I have continued to go on about the psychological stuff and I'm sorry for any annoyance caused, which is certainly totally unintentional. Lynn's experiences seem so similar to the experiences of people with eating disorders 20-30 years ago. Or depression, further back than that. I am not surprised she has sunk so far down, given the totally negative (even abusive?) treatment she has had.
It's true that ME and CFS are totally lumped together as the same thing, and I don't know how the Americans define them.
Thanks, Rachel.
I have read a little on the mind-body connection, and would definitely concur there is something to it. Not just with relation to illness, but in relation to just about everything in life.
The problem with it as applied to ME is that treatment for the 'mind' is the one and only thing offered to sufferers, and it is the only thing that gets government funding. This is why the touchyness over it, I guess.
As for my personal experience, I was told I had Chronic Fatigue Syndrome, when actually what seems to have happened is I experienced a severe reaction to a course of drug treatment. I was told I needed to 'change my thinking' and get into 'graded exercise'and my symptoms would disapear. But oddly changing my thinking and grading my exercise did not fix a disrupted endocrine system and was never going to. It took fuck off drugs to do that.
Using the whole 'CFS is a condition of the mind, go away and make yourself better' was quite frankly used as a fob off by doctors who were too lazy, ignorant or prejudiced to bother doing their job properly. And I've lost a year of my life because of it.
I thank you for coming over and for your comments anyway. I really hope some people have actually read our exchange and have learnt something from it.
I'm glad the fuck off drugs worked. I would want fuck off drugs too! I have learnt stuff anyway. Take care Scribbles.
Very depressing.
Rachel wrote "I know that ME can be successfully treated and managed via cognitive behaviour therapy."
How do you know that? Evidence please.
The 25% ME Group surveyed 66% of their membership, and found that 93% of them had found CBT unhelpful.
Rachel wrote "There is no way to positively test for or identify ME, except to diagnose via process of elimination."
Not yet, but we're not that far off. The abnormal RNase-L enzyme is found only in people with ME or Multiple Sclerosis. Also, Jonathan Kerr's gene expression work looks likely to be leading towards a gene expression profile. And recently a new Japanese test has been able to identify serum from people with CFS (compared to healthy people) with 93% accuracy.
Rachel wrote "My info comes from..... the Action for ME website ..amongst others!"
AFME? This does not inspire great confidence. Three months ago, there was an ME conference in the UK, with ME experts and delegates from across the world. I am informed that AFME did not bother to attend.
Rachel wrote "why does the word "psychological" seems to make folk jump out of their skin with indignation?"
Because it's incorrect. Not because there's anything unreal about psychological illness. But because it is incorrect, and leads to people with ME being given inappropriate treatment that worsens their condition.
Rachel, you may be interested in the results of a couple of autopsies on people who've died of this illness? A 23 year old man "viral infection of the heart muscle", and a 32 year old woman "inflammation of the spinal cord, very similar to that seen during active infection by herpes viruses."
Not my website, but some interesting points http://fumblings.com/msharpe.html
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