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Topic: A PLEA - NOT RACE RELATED
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August 30, 2012 at
10:45:29 AM
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Some of you will say or post that this is not an appropriate post for a racing board. Some of you may remember me as just KitKat, I was at one time compiling video's of racing, mostly sprint cars. Then I was doing some filming with a local racing series in Tulsa.
Myalgic
Encephalomyelitis is a virus with a 4-7 incubation period. No worries
you can't catch from me, it's alot like the Polio virus. Also don't be
alarmed there are five catagories in which you need to have three
symptoms in each...don't be getting hysterical. It affects 85%-90% of
women. Myalgic Encephalomyelitis (M.E.) is a debilitating
neurological disease which has been recognised by the World Health
Organisation (WHO) since 1969 as a distinct neurological disorder. M.E.
is classified in the current WHO International Classification of
Diseases with the neurological code G.93.3. It can occur in both epidemic and sporadic forms. Over 60 outbreaks of M.E. have been recorded worldwide since 1934. What
defines M.E. is a specific type of acquired damage to the brain (the
central nervous system) caused by a an enterovirus. It has multi-system
involvement which is characterised by post- encephalitic damage to the
brain stem; a nerve centre through which many spinal nerve tracts
connect with higher centres in the brain in order to control all vital
bodily functions – this is always damaged in M.E. http://www.hfme.org/ The
medical doctors and the American Assoication of Medicine will not just
use ME as a stand alone disease, they will attach Chronic Fatigue
Syndrome. Then they may put the sufferer on physic drugs and an
exercise rountine.....this unfortunately worsens the ME and will most
likely result in death, usually heart failure.
Here is a post from Mayo's discussion board about ME:
"Please
save yourself a lot of wasted time and money. Skip the Mayo for ME
(CFS). I went to the Mayo in 2007 and was quickly dismissed as a psych
patient. The endocrinologist even mislead me about a review of my past
brain MRIs that showed a number of issues." Hummingbird foundation states "having ME
is like having parts of Multiple Scleriosis, AIDS, Alzheimer's, the
flu, Arhtristis and Epliepsy all mixed together at once, with some extra
horrific symptoms thrown in that are entirely its own. It is a
neurological illness of extraordinary incapacitiating dimensions that
also affects virtually every bodily system". This disease is
not Fibromyalgia, it is not Chronic Fatigue Sydrome and its not a mental
illness. PLEASE PLEASE help make friends, family everyone you know
that this disease exists and is real and is not being treated right. The
doctors are trying to tell me I'm suicide. If I were, why did I refer
myself to the USA's number 2 clinic to find out what's happening and
find a cure? Given time with no answers, no help I would have died on
my own. I've just re-connected with my family over in England, the last time my cousin, mother and I had physically contact was in 1999. Each one of us right now are chronically ill. I am doing some investigation to find out the answers. Each one of us are housebound. HOW can three females all related decide to do this to ourselves? And we all became ill pretty much at the same time? I hardly hear from my cousin, and two days ago I saw a picture of my mother for the first time, she was on a mobility scooter. It shocked me to see how ill she looked in only two years. So if you find yourself wondering what the hell "she" is on about now .
Research, get the word out, advocate as a lot of ME suffers are unable
to do so because of the progression of this disease. This disease is the easiest to cure if found within six months of onset of symptoms.
Here is a link to one young ladies website. This made me cry. http://www.sophiaandme.org.uk/
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August 30, 2012 at
10:55:58 AM
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And in the great words of Monty Python:
AND NOW FOR SOMETHING COMPLETELY DIFFERENT!
https://www.youtube.com/watch?v=GeI5ke0BENw
Please take this in the good humour it is meant to be as it comes to my mind when I get involved in all the research.
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August 30, 2012 at
01:56:16 PM
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AND I HOPE YOU CAN BEAT IT ..THE BEST I CAN TELL YOU IS DO NOT STOP FIGHTING..YOU WILL BE IN MY PRAYERS
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August 30, 2012 at
03:56:21 PM
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12/05/2010
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840
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No, this is not Sprint Car related, but some things are far more important than Sprint Car racing. I would expect that we all are hoping that you get well soon.
Thanks for the links, it never hurts to be well informed.
Never hit stationary objects!
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August 31, 2012 at
04:57:14 AM
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Thank you for the prayers and wishes.
It seems I'm on a mission I'm trying to advocate against the CFS part of the diagnosis. Let's say you have Lung Cancer, they do not attach the Chronic Fatigue and treat that, the diagnoses doesn't read Lung Cancer/CFS. Chronic fatigue is part of the disease. Why would they label ME with this, when really Fatigue doesn't even come close to how the sufferers feel? Why do they insist that ME sufferers need a graded exercise program and physicartic help, which treats the CFS NOT the ME. To put the sufferer through an exercise program and stress of going to therapy, just worsens the sufferer.....Doctors oath "Do no harm"
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August 31, 2012 at
04:59:48 AM
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British Journal of Nursing, 2012,Vol 21, No 11.
Crowhurst G (2012) Care for Someone with Severe Myalgic Encephalomyelitis. Stonebird, Norwich. When I qualified as a registered nurse back in 1984, it was with a fierce pride; I was a professional. Thank goodness, for it is that professionalism, instilled in the nursing code, that has carried me through
the last 18 years of caring for my wife full time. As I explain in my
new book, Care for Someone with Severe Myalgic Encephalomyelitis, to be a
carer, I choose to commit to: Be brave; Be open; Be true; Be strong; Be alive.* Bravery is called for during every minute of every day, when you care for someone with Severe Myalgic Encephalomyelitis (ME). It takes bravery to look into their eyes and see the suffering; to respond with kindness and gentleness; it takes bravery to speak up. You
cannot undertake the carer’s journey if you are not prepared to respond
instantly and compassionately to the needs of a person with Severe ME,
it is crucial to pay attention and to be fully present. To have ME, in the current climate, is to be vulnerable to misinterpretation, misrepresentation and
mistreatment. A requirement, then, is to protect my wife; this involves
a responsibility to seek out professionals who know the biomedical
truth of ME, who use proper diagnostic criteria and who respect the
complex physical nature and multisystem dysfunction of the disease.
Those professionals are not easy to find. Nurses, I find, often fail to distinguish between neurological ME and psychiatric Chronic Fatigue. In my experience, the profession is shockingly entrenched in promoting a therapeutic, psychiatric approach to ME- which places my wife at risk. There is an urgent need to develop an appropriate biomedical model of nursing practice for people with
Severe ME if practitioners are to avoid tragedies like that of Sophia
Mirza, who died from ME, after suffering appalling treatment at the
hands of doctors and nurses following inappropriate sectioning under the
Mental Health Act for 2 weeks in 2003 (Harding,2010). Last year, well known Severe ME sufferer, Emily Collingridge, a young woman, full of ideas and creativity, so alive in a body aflame with pain, encouraged me to continue to speak out and inspire others through my website, emphasising its importance. She too has now died. Meantime my wife, who cannot bear to be touched, who
is tormented by acute hypersensitivity to light,noise, chemicals, who
is in continuous physical pain all over her paralysed and numb body,
whose days are spent in an endless agony, not knowing what to do to
cope, to get through, is deteriorating in front of my eyes. Because
of the ambiguity that surrounds the illness in the minds of many
medical professionals, the Health Service, for the person with Severe
ME, is currently not a safe place. My early training in an old ‘mental handicap’ hospital
inspired me to validate and value the person and their experience, as
well as to speak up for change. Today, this is not happening in ME. The
nursing code demands that I speak out about it.
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August 31, 2012 at
10:57:10 PM
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I felt I needed to post this information, as right now I too, just as Sophia did, am fighting for my basic human right to be treated for a recognized illness. I have a list of where Mayo (great deniers of ME since 1984) are changing medical notes on a daily bases. Or where I've had one conversation with one doctor, only to be told something different by another. Just as Sophia mother did I am documenting it all.
Sectioning human beings happens over here also. I am safe guarding my life. So not only do I have to deal with this awful pain, unable to take pain meds, as I have become intolerant to them, I'm having to ensure I'm going to be treated fairly.
While I am in pain, I have to trust in God that he know's what his plan is for me.
The stats on having support in our struggles with ME is 50% will believe you. I am hoping that at least 10% of you will, and will care enough to make a difference.
ME doesn't get funding, not like AIDS or Cancer. Please help the ones that are suffering needlessly at the hands of the medical industry.
My mum, cousin and I and the thousands suffering would thank you eneromously.
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September 01, 2012 at
02:25:38 AM
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Jodi Bassett is an Australian artist, writer and patient advocate. In 2009 she founded the Hummingbirds’ Foundation for M.E. which fights for the recognition of M.E.
8. The M.E. advocacy nightmare shock. Perhaps most
shockingly of all, when you try to do some advocacy yourself and tell
people about the double standards, discrimination and unfair treatment,
and show them mountains of solid facts, you are met with disbelief.
People cannot or will not believe that doctors could be so cruel,
unscientific, ignorant and illogical; or that our governments and media
could be so unethical and dishonest by selling their integrity for
political and financial gain; or that so-called ‘charities’ could be
just as corrupt.
Many people refuse to even do a tiny bit of quality reading on the
topic of M.E., wrongly believing that they already have all the facts
and know all there is to know, believing that anything that they don’t
know just can’t be true. If you try to give people correct information
you are accused of exaggerating or being fanciful. People snicker or
roll their eyes when you talk about cover-ups, and give your information
as much credence as stories of alien abductions or the ‘false’ moon
landing. Anything not already mainstream is met with skepticism, as is
the idea all of these groups could collaborate to create a
mutually profitable, and very hard to undermine, lie. This despite ample
evidence of similar scandals and cover-ups in the past, people seem
unwilling to give up their belief in a fair and just government, media
and medical system. They refuse to give up their comforting
delusions….until and unless something similar happens to them, at least,
and they have no choice but to face reality. But then, of course, they
too are disbelieved when they try to spread the word, and so on and on
it goes.
Most families and friends of patients are completely unwilling to
help with advocacy, very often due to ignorance about the medical and
political facts of M.E. Others are too busy with the duties of a carer
for advocacy. Patients with other diseases almost always do not
understand that the most commonly given information on M.E. is entirely
false. By believing M.E. is something it is not and reinforcing many of
the worst myths about the disease, most of these well-meaning groups and
individuals work directly against the interests of M.E. patients,
sadly.
M.E. itself also seems to work against you, in an unexpected way.
People say it’s too severe and there are too many symptoms. The entirely
unique way we respond to even trivial exertion and are so disabled by
it, instead of inspiring sympathy, seems to actually inspire disbelief.
People seem to (bizarrely) believe that there must be some limit on how
bad a disease could be, and that such severe illness couldn’t be
possible long-term. That you couldn’t possibly be too ill to sit or
stand up, use the phone, speak or be spoken to, listen to music, write a
letter or take a short trip out of the house. That you couldn’t
possibly be so ill that you can only dream of one day being well enough
to use an electric wheelchair sometimes, if you’re really lucky – and
so on. As if all humans were ‘guaranteed’ somehow to always be able to
at least do such simple tasks, and to only ever suffer a ‘reasonable’
level or time period of disability. But the body does not acknowledge
such limits. If only.
Thus in 20 years not only has no progress been made in the fight for
basic rights, but things have become much worse for M.E. patients and
they continue to grow worse still as the years pass.
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