Indiana Open Wheel - View Single Post - A plea

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.