The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
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My advocacy letter for fund raising and awareness.

Discussion in 'Action Alerts and Advocacy' started by markmc20001, Apr 18, 2011.

  1. markmc20001

    markmc20001 Guest

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    There is a dirty little secret in government that many people may never know really until it is too late. A dirty little secret that could ruin you, your kids or your families life.

    The secret is there is a health epidemic going on around the world. Its an epidemic of neuro-immune disease. It affects people of all ages and walks of life. An epidemic of Autism, certain types of Cancers, Gulf war illness, and neuro-immune disease,(sometimes confusingly known as Chronic fatigue syndrome, but really nervous system damage).

    Want to know something else very shocking? Your governments have done next to nothing to try and find a biomedical cause for any of these illnesses since the early 80s. In fact, they have done tremendous amounts of research that confuses the truth and makes it seems as though the problems are psychological. Its not an accident that research hasnt been done in my opinion. Governments are controlled by the special interest like the drug companies who are making billions of dollars off you being sick!

    One other stunner,. You think you have an advocacy organization you can donate to and you can go on your merry way thinking you have helped? Think again! Your advocacy organization could be infected with special interests! (my guess is drug companies. probably the same people who have made sure zero biomedical research has been done since the 80s). I believe these guys infiltrate just about every organization out there so they can control practically anything thats going on in the news, in governments, practically anywhere. Ill give one example. In a video testimony by Dr Gary Null (see below [1]) he mentions over half the vaccine advisory panel in the government has scientists funded by big pharma! See for the video for yourself, I dont think Gary is lying.

    I have been vigorously studying this on internet forums where ordinary people (many with advanced degrees in medical related fields) have helped me understand the true science, and not the SPIN one gets from seemingly every media outlet there. Hard to believe, but after what I have seen I can say with 100% certainty its true that the special interests control the government and control our health. If you dont believe me, go to your internet forum of choice for CFS, Autism, GWI, and ask around about governments have actually accomplished in biomedical research.

    Please dont believe what you read in your newpaper without fact checking for yourself (the corporate controlled mainstream media is very biased if you havent noticed yet), but find REAL PEOPLE involved in trying to make change in government actions and see for yourself. Do a little digging on forums and you will see for yourself.

    The only credible organization that I have found is the WPI. The Whittemore Petterson Institute in Reno, Nevada. A research institute founded because a caring family trying to help their own daughter struck with neuro-immune disease(CFIDS) at a very young age. An institute which has found a virus likely to be a major factor in many illnesses such as cancers, autism, and neuro-immune disease(CFIDS). The WPI is small and lacks funds and is facing serious resistance from the entrenched powers in the CDC and the UK, but have made substantial gains with such little resources. The science is there.

    Other than that you can help by calling your political representatives and tell them to get the special interests and drug companies out of the CDC and governments. Fund biomedical research, from GENUINE organizations out of reach from the special interests. By the way, many colleges are funded by You guessed it!! Big pharma,

    Thanks for taking action, because if you dont do something who will? Help fund the WPI for real treatments and understand the government is not necessarily looking after your best interests.

    [1] http://www.youtube.com/watch?v=y3XlJB7J5-o
     
  2. Nielk

    Nielk

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    This is my draft of my letter.
    I would appreciate any comments for change or addition to it.



    Dear Wanda Jones and all committee members:

    Thank you for the opportunity to express my personal comments.

    I am a 56 year old patient who was diagnosed with Chronic Fatigue Syndrome nine years ago.

    I used to have a life.
    I used to have a pretty active, meaningful life.
    Like you, I had my duties at work which I took very seriously.
    In addition, I took care of the household including bringing up three children, marrying them off.
    I enjoyed traveling with my family and later when they were married, with my husband.
    I was active in my local synagogue.
    I babysat for my grandchildren.
    My life was pretty much like the majority of people that you know or who you work with.

    All this came to a stop nine years ago when I developed a vicious stomach flu.
    I knew there was something wrong because a stomach flu should not last for three weeks!
    Since that flu, my health spiraled downward in a scary speed.
    I didn't know what was happening to me but, I knew that my life was pulled under me.

    I lost my life to this disease.
    Today, I am in constant pain, have bone crushing exhaustion where I go through months where I can't get out of bed.
    I suffer from constant headaches, flu like symptoms. I have major sleep problems.
    I also have many cognitive abnormalities. It's rare that I can pronounce fluidly one sentence due to difficulty
    finding words. My memory has been affected to the point where I keep asking the same questions not knowing that I already expressed it a few minutes ago. Sometimes when I get into my car, I have to concentrate real hard to remember where the gas pedal and brakes are.

    Not only have I lost the life that I carved myself but, I have been given instead a life of constant agony.
    If it wasn't for my family, I don't think that I would be present to send you this letter.

    Not only has this illness affected me. It has had a toll on my whole family. They have lost a functioning wife, mother, grandmother.

    To add to the injury, I have been given the lamest name to my illness. "Chronic Fatigue Syndrome" - really????
    This is the biggest travesty ever commited to give this pathetic name to such a serious disease.

    Whoever thought of this name obviously had no clue as to what this disease entails. With this name, they have sent us on a deadly course which no matter what we try, we can't overcome it. People and Doctors included think it's a joke! "I am also always tired" is the most common answer I get from people (even Doctors) when I tell them the name of what I'm suffering from.

    Imagine coming out of the house finally after spending three months in , You go out to sit on your porch and a neighbor comes over and says"have you been away? I haven't seen you for a while". You answer her " no, I was in bed because I suffer from Chronic Fatigue Syndrome". What would your neighbor think?

    This disgrace of a name needs to be changed. It needs to be changed now. You can not expect for anyone to take this illness seriously until it has a proper name. History has proven me right. There is such minimal funding to spend on studying this disease that if it wasn't so sad, it would be laughable. No one takes it seriously. We have been abused by the CDC in the past years where even when some minute funding was allocated to us, it was miss-allocated to fund other "much more important illnesses.

    Our numbers are growing. It is estimated that today 1.7 million Americans suffer from this illness. How many were there ten years ago? and how many do you predict will exist ten years from now if nothing is done to find a biomarker followed by a treatment option?

    Because of the lack of funding for studies so far, we have no real biomarker to apply to us. This is a gift you gave to all the Insurance Companies to deny our claims for disability. They deny that we are disabled yet, I feel like I am dying. Sometimes I wish I could just die and put a stop to all this pain, frustration and affecting my loved ones.

    How many patients need to commit suicide for you to realize that this is serious and demands your attention?or are you just thinking "well it gives us one less to worry about and put a drain on society).

    We are lucky today that there are a few hero doctors who do see what this illness means and want to perform studies but there is no funding for them to do so.

    If this was your child/parent/spouse who was suffering, would you deny funding for these doctors in order to find some answers that could lead to treatment?

    Sincerely,
     
  3. markmc20001

    markmc20001 Guest

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    Good Neilk, I'll send mine to the CFSAC but really I intended to try and raise some money from rich folks who have a sick person in the family.
     
  4. *GG*

    *GG* Senior Member

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    Concord, NH
    I liked them both! Good job peeps.
     
  5. Tammie

    Tammie Senior Member

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    Mark, yours is great....neilk, I have to get off the computer now but I will try to read it soon
     

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