Ik vond dit op ME-platvorm.....
Geplaatst: 11 mei 2007, 14:52
Vikki Rimmer
ME, chronic fatigue syndrome, Auto Immune Deficiency, whichever moniker you
choose to use, none comes even remotely close to making sense of an illness
that literally devastates life as you know it.
Over the past 15 years of illness ME (Myalgic Encephalopathy) has robbed me
of myself and, with the loss of control over bodily functions, has come the
loss of self.
I was a prisoner in my home, a prisoner in my mind, too tired to read a book
for four years, with a curfew on the phone. A call couldn’t last longer than
15 minutes before exhaustion would lay me to waste.
The biggest challenge in my day was to crawl on all fours from my bedroom to
the bathroom to prop myself up against the vanity unit to run water through
my hair. Could I face two rinses? Would the conditioner bring my scalp up
in red welts? Should I even bother? Who’s going to see me other than my
carer? But continue on with my beauty regime I did.
After considerable cajoling I agreed to a short hospital stay in order to
undergo some experimental treatment from Dr Young.
We nicknamed it "the Elvis trip". In the morning we’d take three red pills
which would make us whiz and grind our teeth as if we’d been given the best
speed in London. Then come bedtime we’d pop a purple pill and an anti
depressant to try and bring us down for the night. We were lucky if we
managed three hours of straight sleep, but on the up side we did feel
euphoric. Euphoric enough to cope with the enforced exercise regime, where
we were man handled on to treadmills and forced to peddle the exercise bikes
in the gym.
And for a while it worked. The headaches were a pain, but Dr Young had
warned us that there were side affects to taking the medication. Three
months after our admittance we were as mad as a box of frogs, but were
definitely bouncing about more than we had for years.
We were discharged with a full prescription and instructions to keep
cycling.
The headaches were starting to get worse and it was getting difficult to
sleep. The writing was on the wall – written in blood. The night I started
to bang my head against it in an attempt to knock myself out was the night
that my boyfriend realised my headaches were more than just a little bit
painful. I had a cat scan and the neurologist cleared me of brain tumours
but told me I had to come off of the Elvis trip.
It turns out I stopped the drugs just in time. In America at least two
people had died from aneurisms , preceded by severe headaches, while on the
same drug as me.
Without the speed in my system my body ground slowly to a halt. The
exercising stopped and my body reverted to its pre-hospital state of total
inertia.
ME is like a slow death. My skin looked as grey as a cadavers, my breath so
shallow and my blood pressure so low I’d often fall if I got up. But still,
the doctors could do nothing other than tut and say, "well, you know
sometimes people just spontaneously get better".
Fifteen years on I’m still battling the ME, but it's not as bad as it was.
Sadly if the medical profession continue to go down the ‘psychological
treatment route’ then their awareness of what ME REALLY is will remain
painfully tired.
BBC Health >
http://news.bbc.co.uk/1/hi/health/medic ... 002458.stm
Action for ME >
http://www.afme.org.uk/
ME Association >Letters.
En ook dit vond ik er:
I've heard some dreadful stories, over the years, about the inappropriate
treatment of M.E. (Myalgic Encephalomyelitis) but Kent M.E. sufferer, Vikki
Rimmer's account of a senseless, vicious, brutal regime (reported in
bbc.online.co.uk, Kent People - Amazing Stories), that could endanger life,
ranks as one of the worst ever.
I'm supposing that the crazy treatment procedure of "upper" and "downer"
pill popping, sleep deprivation and forced exercise, she received, was
called the "Elvis trip" because the patients got "all shook up"?
Whatever the reason, this Dr Young and anyone else doing this sort of thing,
needs kicking out with a not-so-soft blue suede shoe.
If Vikki's account is anywhere near accurate, it is not the patients who
are, "as mad as a box of frogs".
Seriously, if this man doesn't know the fundamental principle of medicine,
Primum non nocere, "First, do no harm", I think the GMC needs to have a word
in his ear and he needs to think of a change of career - Madame Tussauds
Chamber of Horrors Curator perhaps?
Vikki is absolutely right in saying that, "if the medical profession
continue to go down the 'psychological treatment route' then their awareness
of what ME really is will remain painfully tired." Sadly, that's the very
road that is being officially recommended by the Government's advisers,
including NICE (National Institute of Health and Clinical Excellence), whose
draft proposals are roundly criticised by every M.E. organisation, without
exception. And tens of millions of pounds are being pumped into two
treatments, one of which, Cognitive Behaviour Therapy (CBT), does no good
for M.E. sufferers, who do not have a negative attitude towards their
illness and, the other, Graded Exercise Treatment (GET), which - even if it
is not so torturous as Dr Young's maniacal regime - leaves a majority worse
after it and some with lasting damage.
ME Free For All.org, together with other M.E. support organisations, calls
for the suspension of these treatments, pending further research.
Crucially, it is because some people have chosen to use various "monikers",
including Chronic Fatigue Syndrome (CFS) as synonymous and interchangeable
with M.E. that treatment has come into the psychiatrist's province and that
research into the physical cause has been hampered and has to rely on
charity funding to survive at all. The name we use, for this debilitating
neurological illness, is crucially important to progress and needs to be
universally agreed.
Yours sincerely
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All.org
------------------------------
ME, chronic fatigue syndrome, Auto Immune Deficiency, whichever moniker you
choose to use, none comes even remotely close to making sense of an illness
that literally devastates life as you know it.
Over the past 15 years of illness ME (Myalgic Encephalopathy) has robbed me
of myself and, with the loss of control over bodily functions, has come the
loss of self.
I was a prisoner in my home, a prisoner in my mind, too tired to read a book
for four years, with a curfew on the phone. A call couldn’t last longer than
15 minutes before exhaustion would lay me to waste.
The biggest challenge in my day was to crawl on all fours from my bedroom to
the bathroom to prop myself up against the vanity unit to run water through
my hair. Could I face two rinses? Would the conditioner bring my scalp up
in red welts? Should I even bother? Who’s going to see me other than my
carer? But continue on with my beauty regime I did.
After considerable cajoling I agreed to a short hospital stay in order to
undergo some experimental treatment from Dr Young.
We nicknamed it "the Elvis trip". In the morning we’d take three red pills
which would make us whiz and grind our teeth as if we’d been given the best
speed in London. Then come bedtime we’d pop a purple pill and an anti
depressant to try and bring us down for the night. We were lucky if we
managed three hours of straight sleep, but on the up side we did feel
euphoric. Euphoric enough to cope with the enforced exercise regime, where
we were man handled on to treadmills and forced to peddle the exercise bikes
in the gym.
And for a while it worked. The headaches were a pain, but Dr Young had
warned us that there were side affects to taking the medication. Three
months after our admittance we were as mad as a box of frogs, but were
definitely bouncing about more than we had for years.
We were discharged with a full prescription and instructions to keep
cycling.
The headaches were starting to get worse and it was getting difficult to
sleep. The writing was on the wall – written in blood. The night I started
to bang my head against it in an attempt to knock myself out was the night
that my boyfriend realised my headaches were more than just a little bit
painful. I had a cat scan and the neurologist cleared me of brain tumours
but told me I had to come off of the Elvis trip.
It turns out I stopped the drugs just in time. In America at least two
people had died from aneurisms , preceded by severe headaches, while on the
same drug as me.
Without the speed in my system my body ground slowly to a halt. The
exercising stopped and my body reverted to its pre-hospital state of total
inertia.
ME is like a slow death. My skin looked as grey as a cadavers, my breath so
shallow and my blood pressure so low I’d often fall if I got up. But still,
the doctors could do nothing other than tut and say, "well, you know
sometimes people just spontaneously get better".
Fifteen years on I’m still battling the ME, but it's not as bad as it was.
Sadly if the medical profession continue to go down the ‘psychological
treatment route’ then their awareness of what ME REALLY is will remain
painfully tired.
BBC Health >
http://news.bbc.co.uk/1/hi/health/medic ... 002458.stm
Action for ME >
http://www.afme.org.uk/
ME Association >Letters.
En ook dit vond ik er:
I've heard some dreadful stories, over the years, about the inappropriate
treatment of M.E. (Myalgic Encephalomyelitis) but Kent M.E. sufferer, Vikki
Rimmer's account of a senseless, vicious, brutal regime (reported in
bbc.online.co.uk, Kent People - Amazing Stories), that could endanger life,
ranks as one of the worst ever.
I'm supposing that the crazy treatment procedure of "upper" and "downer"
pill popping, sleep deprivation and forced exercise, she received, was
called the "Elvis trip" because the patients got "all shook up"?
Whatever the reason, this Dr Young and anyone else doing this sort of thing,
needs kicking out with a not-so-soft blue suede shoe.
If Vikki's account is anywhere near accurate, it is not the patients who
are, "as mad as a box of frogs".
Seriously, if this man doesn't know the fundamental principle of medicine,
Primum non nocere, "First, do no harm", I think the GMC needs to have a word
in his ear and he needs to think of a change of career - Madame Tussauds
Chamber of Horrors Curator perhaps?
Vikki is absolutely right in saying that, "if the medical profession
continue to go down the 'psychological treatment route' then their awareness
of what ME really is will remain painfully tired." Sadly, that's the very
road that is being officially recommended by the Government's advisers,
including NICE (National Institute of Health and Clinical Excellence), whose
draft proposals are roundly criticised by every M.E. organisation, without
exception. And tens of millions of pounds are being pumped into two
treatments, one of which, Cognitive Behaviour Therapy (CBT), does no good
for M.E. sufferers, who do not have a negative attitude towards their
illness and, the other, Graded Exercise Treatment (GET), which - even if it
is not so torturous as Dr Young's maniacal regime - leaves a majority worse
after it and some with lasting damage.
ME Free For All.org, together with other M.E. support organisations, calls
for the suspension of these treatments, pending further research.
Crucially, it is because some people have chosen to use various "monikers",
including Chronic Fatigue Syndrome (CFS) as synonymous and interchangeable
with M.E. that treatment has come into the psychiatrist's province and that
research into the physical cause has been hampered and has to rely on
charity funding to survive at all. The name we use, for this debilitating
neurological illness, is crucially important to progress and needs to be
universally agreed.
Yours sincerely
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All.org
------------------------------