Friday, July 10, 2009

ME Sufferers plead for Research

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Dear Readers/Friends,

This is probably one of the last *Help ME Circle*'s for
the coming time. Since many months my pc works
terrible. I have to restart several times a day. And now
he is so bad, that I can only work in 'safe mode'.

I have to reinstall XP, which is much work, that I hate.
With of course the hope that this will solve the
problem.


Apart from this: my bulletin cost me so much time
and effort, that I have let slide all my personal affairs
for many years. Which causes of course all kind of
bureaucratic problems - One example is that I have
to make my tax declaration for 2006, 2007 and
2008.



It is possible that I come back one or two times; but
for security I want to thank meanwhile all the people,
who sent me so many heartwarming letters of thank.

And I want to ask apologies for the many people,
who sent me questions or important remarks, which
I couldn't answer. I really can't do more, then I did.
Forgive me please.


With tulips from Amsterdam,


~jan van roijen


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http://bit.ly/ZXe3E



WalesOnline


Health News



Me sufferers plead for
research into their illness


jul 8 2009

by staff reporter, south wales echo


me is one of the most
misunderstood illnesses.


Ceri isfryn spoke to three sufferers whose
dreams have been shattered by the
condition

can you imagine not sleeping for 48
hours, then running a marathon with a
hangover and a dose of flu?

That's how it can feel to have ME.



Myalgic encephalomyelitis, or chronic
fatigue syndrome, causes long-term and in
some cases debilitating exhaustion which
is rarely relieved by sleep.

The first symptoms are often similar to flu,
but they do not go away and, in many
cases, may become worse.

It is estimated that 250,000 people in the
uk have the condition. Anyone can develop
it, although it appears to be more common
in women, who make up 75% of cases.


Someone who knows full well the impact of
the condition is ex-flautist eleanor dent,
who tutored young musicians at the royal
welsh college of music and drama.

However, since developing me
six-and-a-half years ago, she has been
unable to play her flute or work at all as
she doesn't have the mental or physical
energy to do either.


Eleanor lives with her husband john and
two teenage children in heath, cardiff.
Eleanor gets frustrated as her husband has
to do all of the household chores while also
holding down a full-time job as a project
manager with the vale of glamorgan county
council.


"my muscles are too weak to even use an
iron, so I have to pay somebody to come
in. If I do too much housework, I make
myself ill and it takes days to recover."


i can just about walk 100m once a week if
i'm lucky, but some weeks I can't even
manage that."

i'm 49, yet I feel at least 30 years older
because of me."


remarkably, there is no diagnostic test
available for the illness on the nhs. As a
result of this, eleanor has never been
referred to a consultant and she cannot be
prescribed any drugs other than basic
painkillers.

She is angry at the government for not
providing more funding for me research.


"i've been writing to my mp for the past
six years to no avail. I've given up."

eleanor noted that there are great
similarities between the symptoms of me
and ms, yet the difference in research
funding between the two is vast.


imagine showing all of the symptoms of
ms but having none of the care facilities
or drugs. As it stands with me, you have
to die before you get a proper diagnosis"



another sufferer whose life has been
destroyed by me is 24-year-old michelle
penny of dinas powys. She been
housebound for the past 10 years as a
result of her illness.


Michelle has to rely on her mother to do
the simple tasks that non-sufferers take for
granted, such as washing, dressing or
eating.

"on days when I feel particularly unwell, I
can't get showered or dressed at all and I
spend the day quietly lying on the couch"

"on better days I can get up slowly,
shower and dress with help. This can take
up to two hours to achieve and I usually
need a rest afterwards. I then have lunch
and go back to bed, where I spend the rest
of the day"


despite the severity of her condition,
michelle no longer receives any care or
support from the nhs, except for a
repeat painkiller prescription which dates
back to 1999.

As a result she says she finds it difficult to
claim benefits
as she has no medical
backing for her claims.


"i don't think there is enough support
from the nhs. There is no cure for me but
showing a patient a little understanding
by aiding with benefit claims would be
helpful."


her education has also been badly affected
by the disease and she claims that the
options available to those who can't
physically attend lessons or lectures are
extremely limited.

my goal is to go into teaching but due to
the amount of time that I missed from
school, I left with no qualifications. I have
managed to sit four gcses by following
e-learning courses from home.


"one day, when I am well, I will hopefully
finish my studies but at the moment my
me is too severe and as I am physically
unable to go to college or university there's
little I can do."


michelle's entire teenage life has been
lost to the illness. She no longer speaks
to anyone who she went to school with
and describes the illness as a very
isolating one.


She said that it didn't help that
several teachers accused her of
laziness when she was initially
diagnosed, and she was bullied at
school for missing so many
lessons.



Jane colby, the executive director of the
young me sufferers and former
headteacher believes that wales is one
of the areas which displays a high level of
widespread injustice in schools that do
not recognise me as a serious physical
disease.

She also feels that there is insufficient
practical support being offered by the
government.

"money which has been spent by the
government has been unwisely allocated.
Clinics have been set up which are mostly
focused on psychological treatment
instead of practical support. Such clinics
have even supplanted much better
services that already existed."


the deputy chief medical officer for wales,
professor mike harmer, said:

"we recognise that further work needs
to be done and the establishment of the
seven new local health boards later this
year will provide more opportunities to
drive forward services as they are
responsible for the commissioning of local
services."


like michelle, sharon price is also an me
sufferer who has had to deal with a drastic
change of lifestyle.

At 17 she was an international welsh
gymnast who aspired to compete at the
commonwealth games. She is now 35, and
her life has been radically changed by me.


"life is tough, day in, day out. It is
relentless, you never get a day off for good
behaviour and there is always a price to
pay for doing things
, so I try and achieve a
balance of doing as much as I can without
overdoing it."

although she is able to teach languages
part-time and has her own company,
languages for living, she can work only
limited hours a day and suffers with what
she describes as:

"burning, screaming pain in her neck, back
and shoulder".


Sharon has found that the only thing that
eases her pain is acupuncture and
chiropractic treatment – both of which she
must pay for herself.

"i don't receive any government financial
assistance and I never have. You are very
much left to your own devices with me and
it can be incredibly isolating.


"it is bad enough that a quarter of a
million uk citizens are putting up with this
serious, chronic illness day in, day out,
but it is even more heartbreaking living
with the knowledge that there is very
little biomedical research going on in the
world to try to understand me and to try
to find a cure to relieve the suffering".


"when is the government going to
stop ignoring us and fund some
biomedical research into this
disabling, complex condition?"




do you know how it feels to be utterly
and completely without hope

to watch the well through jaded
windows passing by each day

while you are walled alive inside a home
you would escape from

if you could, though you have not
committed any crime,

incarcerated indefinitely, no parole,
appeal or pardon?

Not one prison visitor ever calls, no social
worker, education officer,

welfare woman, surly screw, committee
member, doctor, nurse or shrink.

Do you know the helpless, heartless
moment when the politicians

send polite replies to your appeals for
help? 'we know. We sympathise.

We're sorry. We will do our best. the
years go by. You write again.

we know. We sympathise. We're sorry.
We will do our best.' they don't.

The nhs will tell you: 'we are wonderful.
We help so many people. We're
improving.

We've improved. We're winning. We
have reached our targets. we don't care

is what they should be saying. not for
you. You are nothing much to us.

You are a bafflement, a nuisance, an
embarrassment, a perplexing puzzle.

Failure is not good for our pr. Your
condition undermines our success rates.

We shall continue to ignore you, though
you mushroom and envelope us.

Beware complacence. Here we come,
dragging wasted bodies to your
threshold,

whimpering sotto voce through your
letterbox, hauling heavy limbs

to immolate two hundred thousand
corpses in a beacon blazing brightly

you cannot fail to see, you ministers, you
medics, bureaucrats, despisers

of our frailty, you excuse-makers, you
children with your clumsy, clammy,

hammy hands clasped tightly on your
ears. Make a wish, oh me people,

that every smarmy, slimy, scheming,
selfish politician might suffer

as we do and have done, will do five, 10,
15, 20 years,

a lifetime, without hope, so we can smile
and sigh and shrug our shoulders

and close the door, ignoring them in turn,
until they're dead.




Eleanor dent
 


* * *
There are many similarities between MS and CFS/ME.  Both are neurological diseases and CFS is sometimes diagnosed as "atypical MS".
 
Yet, in the US, MS receives $250/patient in research funding and CFS receives $1/patient in research funding -- much of that misspent.  CDC audits have found money allocated to CFS spent instead on research into other diseases having nothing to do with CFS, and much of the budget has been spent trying to prove we're merely depressed or otherwise emotionally unstable rather than looking into the neurological problems and the virus that causes them. 
 
No matter what research proves about CFS, Reeves is there, braying donkey-like, that patients are simply unable to handle a little stress.  Trust me, we did not rise to the top of our professions because we are emotional basket cases; personally, I thrive on stress, I loved the adrenaline rush of my career in litigation.  Then I had a severe virus and was never the same.  Dr. Fujioka of the renowned Scripps Institute points out that we've known for years that a virus can re-program the body; something Reeves apparently never learned when he got his medical credentials (apparently out of a CrackerJack box).
 
Replacing Reeves probably would not get us a larger research budget, especially in these troubled economic times, but would ensure that the pittance that we receive is spent on research that provides some help to patients rather than trying to prove it's all in our heads.  I don't know about Reeves, but my head has been examined six ways from Sunday, and no one with the proper credential has ever found anything wrong -- MDs who took Psych 101 make an amateur diagnosis, but those with training and licenses patiently explain to me why that diagnosis is wrong. 
 
(For example, if you have legitimate concerns about something based on facts, that is not "anxiety", it is a "reasonable precaution".  Someone with sudden fainting spells who chooses not to cross a high-speed high-traffic road is not suffering "anxiety" or "phobia" but is exercising reasonable safety concerns when she tells the doctors that she cannot go for a walk alone and has no one to walk with her to ensure that she is not run over if she faints in the middle of the street.  Nonetheless, this is how it was portrayed in the medical records by doctors -- like Reeves -- who refused to accept that they needed to seek out a physical reason for the problem instead of making unwarranted psychiatric diagnoses that saved them having to research/read/think.)

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