snowathlete
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A patient of Dr. Enlander's has writen to President Obama about the plight of ME/CFS patients and asked for appropriate funding. He is still waiting for a response. Here is a copy of his letter.
He mentions the deplorable lack of funding on ME/CFS, $6M in 2012, but a recent blog on occupyCFS highlights the reality that it was even worse at only a little over $3.5M. Here is the topic on that with a link in the first post:
http://forums.phoenixrising.me/inde...on-me-cfs-research-in-2012.23225/#post-354996
September 8, 2012
Mr. President:
I am the first person in Connecticut to receive Social Security Disability for what (at the time, 25 years ago), was called "The Epstein Barr Virus Syndrome", which was later named Chronic Fatigue Syndrome.
I've also since received an additional Fibromyalgia diagnosis, as well as that of Chronic Lyme Disease.
My Soc. Sec. disability attorney told me that it took someone with my background for the courts to make their award.
I found this unfortunate, irrespective, I'm proud to have helped pave the way for several deserved individuals, since.
I was 29 when I initially began to experience most of my symptoms.
I was able to continue to work for nearly 10 more years, until I became bedridden.
I am a chemical engineer and held a managerial position with a major chemical company.
I was a varsity athlete in HS and college, having been inducted into my hometown sport hall of fame, in 2009.
I served honorably in the U.S.M.C.R., from 1970-1976.
I've been married to the same beautiful woman for nearly 39 years.
We've been blessed with two wonderful children, both of whom have succeeded beyond a parents wildest expectations.
Our son was Senior class president in HS and graduated Phi Beta Kappa and Magna Cum Laude from Boston College.
He then became his company's youngest VP, before leaving to start his own Belgium Beer Import business. He's now been in business for three years and is on-track to sell $4 million this year and has five employees.
His wife is a practicing attorney and last September they blessed us with a wonderful grandson.
Our daughter graduated third in her HS class and then received a Chemical Engineering degree (with high honors), from The University of Virginia. She's now a Director with the pharmaceutical company Merck.
Upon graduation from UVA, she married her HS sweetheart and then worked to help put him through Med School at UPenn, followed with his cardiology fellowship, at Jefferson.
She's also blessed us with our wonderful eight year old granddaughter and our equally wonderful six year old grandson.
Words can not describe the obstacles our family has faced over these past 25 years of my disability.
I feel fortunate to have had my disciplined up-bring, otherwise I do not believe our family would likely be where we are today.
I've had to fight the courts on three separate occasions.
Fortunately, I've prevailed all three times.
I'm rather confident that most others (who suffer severely from my illness), have not been nearly as fortunate.
There are now over a million CFS sufferers, in the US alone.
It is beyond appalling that this illness is now costing our government over $17 Billion/annually in lost productivity and yet only $6 Million/annually (go-away money), is still being spent on CFS research.
Additionally, the insurance company's have successfully channeled CFS into a woman's illness and are now limiting disability liability to no more than two years, as is the case with psychiatric disabilities.
The psycho-babble surrounding CFS continues to this day.
I (along with a million other CFS sufferers in the US), beg you to take the necessary steps towards reversing this deplorable lack of appropriate funding situation.
Additionally, I request that any/all future moneys (designated for CFS research), be mandated towards physical studies, as opposed to any psychiatric involvement, as a causative factor.
Note - It goes without saying that any chronic illness will develop some form of a psychiatric component.
sincerely
An ME/CFS Patient
He mentions the deplorable lack of funding on ME/CFS, $6M in 2012, but a recent blog on occupyCFS highlights the reality that it was even worse at only a little over $3.5M. Here is the topic on that with a link in the first post:
http://forums.phoenixrising.me/inde...on-me-cfs-research-in-2012.23225/#post-354996
September 8, 2012
Mr. President:
I am the first person in Connecticut to receive Social Security Disability for what (at the time, 25 years ago), was called "The Epstein Barr Virus Syndrome", which was later named Chronic Fatigue Syndrome.
I've also since received an additional Fibromyalgia diagnosis, as well as that of Chronic Lyme Disease.
My Soc. Sec. disability attorney told me that it took someone with my background for the courts to make their award.
I found this unfortunate, irrespective, I'm proud to have helped pave the way for several deserved individuals, since.
I was 29 when I initially began to experience most of my symptoms.
I was able to continue to work for nearly 10 more years, until I became bedridden.
I am a chemical engineer and held a managerial position with a major chemical company.
I was a varsity athlete in HS and college, having been inducted into my hometown sport hall of fame, in 2009.
I served honorably in the U.S.M.C.R., from 1970-1976.
I've been married to the same beautiful woman for nearly 39 years.
We've been blessed with two wonderful children, both of whom have succeeded beyond a parents wildest expectations.
Our son was Senior class president in HS and graduated Phi Beta Kappa and Magna Cum Laude from Boston College.
He then became his company's youngest VP, before leaving to start his own Belgium Beer Import business. He's now been in business for three years and is on-track to sell $4 million this year and has five employees.
His wife is a practicing attorney and last September they blessed us with a wonderful grandson.
Our daughter graduated third in her HS class and then received a Chemical Engineering degree (with high honors), from The University of Virginia. She's now a Director with the pharmaceutical company Merck.
Upon graduation from UVA, she married her HS sweetheart and then worked to help put him through Med School at UPenn, followed with his cardiology fellowship, at Jefferson.
She's also blessed us with our wonderful eight year old granddaughter and our equally wonderful six year old grandson.
Words can not describe the obstacles our family has faced over these past 25 years of my disability.
I feel fortunate to have had my disciplined up-bring, otherwise I do not believe our family would likely be where we are today.
I've had to fight the courts on three separate occasions.
Fortunately, I've prevailed all three times.
I'm rather confident that most others (who suffer severely from my illness), have not been nearly as fortunate.
There are now over a million CFS sufferers, in the US alone.
It is beyond appalling that this illness is now costing our government over $17 Billion/annually in lost productivity and yet only $6 Million/annually (go-away money), is still being spent on CFS research.
Additionally, the insurance company's have successfully channeled CFS into a woman's illness and are now limiting disability liability to no more than two years, as is the case with psychiatric disabilities.
The psycho-babble surrounding CFS continues to this day.
I (along with a million other CFS sufferers in the US), beg you to take the necessary steps towards reversing this deplorable lack of appropriate funding situation.
Additionally, I request that any/all future moneys (designated for CFS research), be mandated towards physical studies, as opposed to any psychiatric involvement, as a causative factor.
Note - It goes without saying that any chronic illness will develop some form of a psychiatric component.
sincerely
An ME/CFS Patient
