A plea

KitKat · 8/30/12, 3:26 PM

Some of you will say or post that this is not an appropriate post for a racing board. Some of you may remember me 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/

AND IN THE FAMOUS WORDS OF MONTY PYTHON:

now for something completely different.....

https://www.youtube.com/watch?v=GeI5ke0BENw

Please take that in the good humour it's meant to be, it's something that comes to mind while I am researching.

KitKat · 8/31/12, 6:07 AM

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"

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.

racegal · 8/31/12, 11:10 AM

Thank you for the information! My prayers are with all of you!

KitKat · 9/1/12, 3:41 AM

Reason for the post:

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.

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.

9/1/12, 3:41 AM	#4 Re: A plea - not race related
KitKat Member Join Date: Aug 2010 Posts: 21	Reason for the post: 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. 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.