Friday, June 3, 2011

Letter to Mr Obama

Dr Obama is recognizing the 30 years of research, clinical trials and science in HIV/AIDS that has improved the lives of millions around the world. From uncontrolled epidemics, to a stigmatize disease in the 1980's to giant leaps in science and treatments and human rights 30 years later.

However not many know that there was other epidemics in the 1980's, that were ignored by governments and most doctors, and still continues to this day. ME/CFS or still sadly called chronic fatigue syndrome is still a mystery for scientists, stigmatized by society, government and doctors and its sufferers are left for dead, litterally.

In response to a blog article I decided to reply to Mr Obama. I sent him the letter.

Mr Obama, 

While thousands are researching HIV and AIDS around the world, and billions of $ in research has been allocated, there is a group of patients that suffered similar epidemics in the 1980's but has been grossly ignored, and naked in a demeaning manner to trivialize and minimize the suffering of the people. Tell most doctors that you have chronic fatigue syndrome, and due to stigma and lack of knowledge, chances are your health troubles will  be discounted and you will be sent home without proper care. 

Many, many patients have given up on health care due to the stigma barreer and loss of trust in the health care system, or they can't afford the care anyways due to loss of insurance benefits and the loss of disability benefits. There were epidemics of ME/CFS in the 1980's, Mr Obama, discounted as hysterical illness by epidemiologists at the CDC. To this day, the CDC still broadcast on their website that the best treatment for ME/CFs is therapy and anti depressants despite being recommended many many time by the CFS advisory committee that there were severe flaws to theor program.

There are over a million sufferers across the USA and 17 times more that amount around the world, waiting for research, clinical trials and treatments for a very debilitating disease that not only affectswomen, but men and children. 

Mr Obama, scientists are being told that studying Me/ CFS would be a career suicide. doctors do not even learn about this disease in med schools, nor this disease belongs to any medical specialty.  Doctors that treat, the very few of them are marginakized by their colleagues. 

Patients do die of this illness only it is not tracked by statistics. Cancers, heart disease and suicides. the ones that are living are in a living death situation, housebound, bedbound with no help whatsoever. no patients would argue that this is a Tuskegee eperiment.

Patients wonder if the recent discovery of a link with retrovirus XMRV with chronic fatigue syndrome will be phased out. The research that have come out from the Whittemore-Peterson Institute have come out of recognititon of human suffering and that an nfectious link has been made and now violently repressed by scientific communtiy without de├žent attempts at relication of the initial study by Lombardi et all in 2009. i request that Your government independantly investigate the politics behind XMRV, science and chronic fatigue syndrome.

There is much to say, much discrimination and injustice and this has to stop. 

thank you, Kati sick for 2.5 years.

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