Thursday, October 7, 2010

The Emerald City- CFSAC Meeting 2009 (October 29-30, 2009)

This is my testimony I gave last year at the CFSAC Meeting by phone as I was too ill to attend. 

Good afternoon to members of the CFSAC committee, to Dr. Peterson, Mrs. Whittemore, patient advocates, doctors, to everyone suffering from ME-CFS and their families.

The Emerald City
October 8th 2009 came the news that XMRV is a retrovirus, a member of the same family of viruses as the HIV virus has been found in patients with CFS. I feel like I am in the wizard of Oz and the house just landed on the CDC.  Now the red ruby slippers are now worn by the Whittemore Peterson Institute.  The CDC has been shown up as having been grievously wrong for the past 30 years. Finally, there is real hope, real news and real science.  It is our time even though many lost the best years of their lives but for those who just became ill I am hopeful there maybe treatments for you in the future. WPI is our Emerald City. They are our hope where causes, treatments and cures will be found for this devastating disease.

I offer my sincere appreciation to the Whittemore Peterson Institute, to Annette Whittemore, Dr. Peterson, Dr. Milovits, the Cleveland Clinic and The National Cancer Institute for spending the time and energy on investigating ME/CFS from a scientific perspective that was published in the Science. Also, I would like to thank The NY Times, LA Times, Reuters, US News and many other newspapers for reporting this very important news regarding ME/CFS patients.  The study was published in the Science one of the most prestigious medical journals.  I thank you for publishing this groundbreaking news.

Last week Reuters reported that a Study “isolates virus in chronic fatigue sufferers. Dr. Mikovits said “the study offers hope that CFS sufferers might gain relief from a cocktail of drugs designed to fight AIDS, cancer and inflammation.”
Her co-authors (Dr. Milovits from WPI ) include scientists from the National Cancer Institute and the Cleveland Clinic.
Dr. Mikovits talks about clinical studies and treatments that could be used now.

Serious Health Crisis
The U.S. and the world are facing a serious health crisis that millions have contracted a disabling AID’s like illness. The US is in great risk as this epidemic continues to take the lives of millions.  The Tragedies and the suffering that befall ME/CFS victims are immense. ME/CFS robs people of their life and of their very being.  It destroys a person on every level.  Many patients are completely bed ridden and unable do to the simplest tasks healthy people take for granted. Little tasks are a monumental undertaking for someone with ME/CFS.  .
 Patients suffer from immune & neurological problems, infections, viral, retroviral infections, fevers and a continual flu like illness. Many have Subclass IgG 3 deficiency, Low T4 cells, HHV-6, CMV, EBV, mycoplasma, cognitive/memory problems, exercise intolerance and lethargy and so many other serious conditions and symptoms. Many are bed ridden and cannot care for themselves. The kind of fatigue we suffer is not fatigue it is the inability to exert energy that we do not have. We have lethargy which is not fatigue and is only part of our illness.

The CDC is so out of touch with this illness and I wonder if this is on purpose. Why do you ignore science?  Why will did the CDC coin the term Chronic Fatigue Syndrome?  It is like calling people with diabetes, chronic sugar syndrome, or MS, Chronic walking syndrome, or TB  Chronic coughing syndrome?  It is harmful to marginalize such a serious debilitating illness and be called something that sounds so trivial.
Why would 17 million people from around the world suddenly give up their careers, family, hobbies and activities they once loved?

Crimes, Lies and Cover Up
What the CDC has done I consider very serious crimes against people who are disabled.  The CDC cover up must end. The CDC must be investigated for the crimes committed against severely disabled people. Who is responsible and why the cover up? Who is to blame?  Is it just Reeves and Wessley and Stause or is this a larger cover up going on?
 We will get lawsuits and senate hearings. Patients will be vindicated one day.  I hope Reeves and Wessely are put in jail for the lies and cover up of what I do believe will go down in history as one of the most serious diseases of our times.

 I still wonder WHY?  To allow patients with ME/CFS to endure severe suffering and torture for over 25 years. No medical treatments and no clinical studies in over 25 years for such a servere debilitating illness. Someone with ME/CFS feels everyday like someone who is dying from late stage Aids (Dr. Loveless). Yet the CDC does nothing.
 I do not know why this would happen unless the government is well aware of what is going on.
Millions around the world are sick.  Many once were earning a good living but are now living in poverty.  How many women who wanted to have children find themselves barren without hopes having a child?  How many more will suffer in silence because the CDC does nothing?  Broken lives, dreams, hopes.  Why?

My best friend use to tell me that we were a human experiment in 1990. I did really understand what she meant. I was young and a bit naive.  I lost her in 1998 to this illness.  I then saw a true story about Tuskegee syphilis experiment.  It was a 40 year study where black men were not given penicillin to treat syphilis.  The United States government wanted to see how they would die. It was a human experiment that President Clinton after hearings were done had to pay families millions of dollars.
 I read about the study many years ago. I than watched the movie about the Tuskegee experiment of men who lived and died a torturous disease- tears rolled down my eyes for I felt a connection to those that endured so much suffering and I had to then question is this what they are doing to us?  Are they waiting to see how we will die?  For that is what they did in the Tuskegee experiment they wanted to see how men with syphilis (untreated) would die. For over 25 years the CDC has been watching us suffer and die. How can they let millions of people suffer and die when there are scientists proving that we have an infectious disease one that may even be contagious?
With the news of XMRV why do you still doubt you will find XMRV in us before even conducting tests? We need clinical studies immediately.

The damage is done; history will now look back and ask what the CDC did all these years while millions were sick and many died.  Patients will no longer be judged. The CDC and those who watched millions of sick and severely disabled people being mistreated, abused and neglected will one day be judged. The CDC and whoever is involved in this crime justice must be served.  The world will know the truth.

 Do you laugh at us behind closed doors? Is this a joke to you?  It must be for you have done nothing in over 25 years but to call us names
What exactly is going on at the CDC while there are thousands of scientific articles that we are suffering from infections, viral, immune system disorders and neurological problems do you ignore science?
I will spend every moment I can to let the media know what has happened and try to get Congress to conduct hearings on the travesty of what the CDC has done. This illness has been marginalized by the CDC and the crimes committed have been committed on their behalf. The damage inflicted on patients who have been told this was a psychological disorder is insurmountable.

 This is discrimination of severely disabled people.

ME/CFS Patients
While the news of XMRV linked to ME/CFS is great news, for those who have lost 20 years of their life it is a bitter sweet moment.  I had a wonderful life ahead of me.  I wanted children and a family and I would have had a wonderful life.  I have two degrees in Computer Science and Mathematics (cum laude). I had an active social life. I was a healthy.  The CDC robbed me of any chance of a normal healthy life.  I could have been treated years ago but instead my life was taken away from me.  I was a vibrant, healthy and so full of life.

In my 20’s I was denied by every insurance company because I had a pre existing condition of EBV.  So what do the insurance companies know about EBV that doctors and the CDC does not? I think this deserves some explanation?  Certainly five insurance companies know who is an at risk client.   I called to speak to these insurance companies for certainly I thought there must be a mistake that I was denied insurance for I was so young.  They each told me I was denied insurance because I had a pre-existing condition of EBV.  I did not understand for I thought EBV was a no big deal virus.

I now have severe muscle weakness that I can no longer drive, walk, or take care of myself.  I was gravely ill this year. It’s not the first time I came close to dyeing. I have been hospitalized many times with serious infections.  Why is my immune system not able to fight infections?  I am tired of the lies. I am tired of the cover up.  I am tired of being so ill.  We would not allow pets to suffer like this.

ME/CFS Patients
 To continue to do studies in that our child hood we must have been abused, if this is what you spend our tax dollars on why bother?  Last month all I heard us being called was “chronic fatigue”.  This is not what we have.
 Many family members do not take their loved ones serious, they do not help them, many marriages fail and friends over time disappear for they do not understand why we are always in bed.  We end up living within walls in a dark room and our bed becomes our home.  The phone that once would ring off the hook stops ringing.  We end up alone broken down feeling helpless.  Knowing no one cares or understands. Knowing there are no treatments or help.
While you are working on your five year plan I did not hear one thing in regards to treatments or clinical trials.  Patients have gone long enough without any treatments of any kind.
 For those ME/CFS expert doctors who are treating patients with antivirals, retrovirals, immunoglobulin’s, and many other treatments we need to have doctors informed of these treatments that are available now, so those that are suffering can get help.
There  treatments being given by Dr. Peterson, Dr. Chenny, Dr. Levine, Dr. Montoya, Dr. De Meirleir and others. Patients need treatments now.
We need clinical trials. I do not see this in your five year plan. What else could be more important?

Norway is doing a clinical study using Cancer drug on CFS patients that have cured or at least put patients in remission. Why are we not looking at this very promising treatment?  Why are we not doing any clinical studies with these medications?
Why do patients have to travel across the country and wait a year to see specialists?  Japan takes this illness very serious and treats it with a medicine they created for it. Why are we not looking into that treatment?

How did  AIDs get treatments? Clinical trials. Many treatments were fast tracked for both MS and Aids. We need treatments now, not in five years.  There are treatments that can help us now.

Why not look at what Norway and other countries are doing? Italy is using a drug for Hepatitis off label for CFS with success.  Why not invite the scientists into this meeting so they can give you an overview of their treatments that they give to their patients?
We need treatments now not five years, while clinical trials are needed, patients who have been ill for 10, 15, 20 years need treatments now before they die. Why not see if you get some treatments recommendations from experts and expedite this so patients can at least get some kind of treatment?  Retroviral, Antiviral, antibiotics,  Immune modulators, Immunoglobulin’s, steroids and the cancer treatments from Norway.
Whatever these few doctors are doing why not allow these treatments and testing to be done by other doctors? Doctors need training.  I just do not understand how for almost 30 years nothing has been done.

I would also like to know why Ampligen the only real treatment that has helped patients with ME/CFS recover or get better (many patients) why it is not available?  Why is it considered a clinical study but patients have to pay 2k a month for it?  Again the crimes against people with ME/CFS are insurmountable. No treatments and no doctors while people suffer and die.

Recommendations for your 5 year agenda:
  1. Have a meeting with the best ME/CFS doctors around the country and WPI to see what tests and treatments they give.
  2. Immediate treatment is necessary. Whatever these doctors are using to treat patients make it known to doctors what they are doing.
  3. Doctors need to be notified of these treatments immediately. There is a list of CFS doctors you can start with them.  This would not be that difficult a task for immediate testing and treatment.
  4. Immunoglobulin must be made available for those with ME/CFS.
  5. Clinical trials need to begin immediately.  Not in 5 years.
  6. Public awareness must be made about ME/CFS is a serious illness and that we suffer from a Neuro-immune disease.
  7. Must inform hospitals, doctors, colleges, and the media how severely ill people with CFS are. If WPI can do it so can the CDC.
  8. Must make doctors in the US aware that the rest of the world calls CFS ME.
  9. Clinical trials like Norway are doing and the drug Italy is using with great success. Make Artunsunate available in the US.  Zadaxin is used in Italy for CFS. Reach out to the pharmaceutical companies as I am sure if they know there are over 17 million who suffer from this disease they will sponsor clinical trials.
  10.  Norway Cancer treatments- let doctors try these treatments on patients now.  We are adults let us sign waivers but let us try treatments that could give us out life back or save us from death.
  11. Stop all studies not relevant to treatments.
  12. Update your website to include that ME/CFS is a real disease. Not a syndrome! Stop marginalize the severity of how patients suffer.
ME/CFS is Torture
To suffer with ME/CFS is torture.  It is a tortuous disease.
I urge everyone with ME-CFS to write to Congress, lawyers and the press. The more they understand our story one day they will have to take the CDC and anyone who was involved in this cover up on charges.  Write to the media- do not stop- we need to stand strong now. Now is the time to hold the CDC accountable for what they have done. Do not bother writing to the CDC- for that is like going to your abuser and asking why they are beating you.  We need the media, lawyers and scientists on our side.  Justice must be served. 
Mrs. Whittmore gave a speech in where she read from a government document that those with ME/CFS die 25 years younger than normal.  They die from heart disease, suicide and a certain form of cancer.  If the CDC does nothing knowing this is true, you will now begin to see more and more die under your watch.  I hope you can live with yourselves knowing those facts while you do nothing to help us.

This is a quote from Dr. Loveless an AIDS doctor who testified before congress on the severity of CFS in 1995.

 "I have treated more than 2,000 AIDS and CFS patients in my career. And the CFS patients are MORE sick and MORE disabled every single day than my AIDS patients are, except for the last two months of life!" Dr. Marc Loveless
 (infectious disease specialist and head of the CFS and AIDS Clinic at Oregon Health Sciences University, in Congressional Testimony, CFS Awareness Day, May 12, 1995)

What the CDC has done is a crime against humanity.
ME-CFS, is one of the most serious illnesses of our times
The CDC has lied to patients, doctors and their country.
Patients have been mistreated and abused by the CDC.
CFS is the third lowest funded illness at the US.

The CDC should be held criminally liable for deliberately making a faulty definition of people who are gravely ill. They should be held criminal liable to allowing people to suffer and die, ignore science and research scientists who have been warning the CDC that patients are suffering severe immune and neurological problems.  This is medical malpractice and is criminal on every level. The CDC is responsible for diseases that maybe contagious. The CDC has been systematically been covering the worst disease of our time. For the CDC not care that XMRV a retrovirus like HIV could be the cause of ME/CFS is criminal. This is also discrimination of disabled people who cannot defend themselves. People are dying a slow torturous death. This is how history will see it.

My heart goes out to all affected by this illness and their families.

Thank you.


  1. As I read your blog I feel your pain. I am in tears and have been almost every day since I have gotten sick.
    I hope you are wrong about this being progressive b/c at the moment I am unable to go to the bathroom alone, can no longer wash my own hair, cannot walk to the mailbox. I have only had cfs for 2 years, and I am 25....
    I agree with everything you said though, my mom has suffered for 20 years and now me, and maybe it will keep going... IT'S TIME FOR A CHANGE!

    You may write me down in history
    With your bitter, twisted lies,
    You may trod me in the very dirt
    But still, like dust, I'll rise.

    thats quoted from the poem by Maya Angelou, I hope that's true for us all!

  2. What happened to you breaks my heart, Carol. Still, I am very glad you wrote this because people really need to know this is happening. What shocks me today, is that now, a year after you wrote this, it still seems up to date. A year ago, I really thought research would have progressed and by this time we would have treatments, but this has not happened. This is scary. Are the NIH and the CDC planning on burying us alive for another 25 years?

    Patricia Carter
    24 yrs ME/CFS, XMRv+

  3. I know how you feel. I have been very sick with CFIDS/FM and a connective tissue disorder (Marfan's, it just killed my brother on 10 Sept 2010) for 16 miserable years. Every day I feel like I have a terrible virus. I can barely sit up and stay awake. My brain is going and I seem to be getting worse. I do think I have some form of a progressive dementia- it is that bad.
    I hear you and I do feel your pain. I am so very sorry for you - for all of us.

    This was written last year for CFSAC. How are you doing now? Will you write another powerful letter to this year's CFSAC? Give them an even harder punch in the face?

    Hoping you are feeling better - sometimes we do make progress away from dreadful. Hugs - S.

  4. Sharon-I am so very sorry for the loss of your brother and all the pain you have suffered. For him to suffer so much and for you to suffer so much is so tragic. My heart goes out to you. I lost my sister in a train crash and we were so close.If you ever need a friend to talk to please let me know. Yes this was my testimony from last year. I will try- The first part is a punch! But no time to work on it! Let me see what I can do! Thank you Sharon - much love to you. Love, Carol

    Wildaisy- Thank you for your kind words-this is for all of us. So much heartbreak. I agree with everything you are saying! Hugs, Carol

    kcleejackson- Thank you for your kind words-I am so very sorry you are so ill- it is so heartbreaking. Thank you for sharing part of your story and such a beautiful Poem. Would she mind if I used it some time? I will of course use her name as the author. I hope so too!! Hugs, Carol

    I sincerely appreciate each of you for writing and sharing your thoughts and stories (your words mean more to me then you may ever know). This really was about all of us.We may not know each other but each of us are connected by this horrific illness and share something only those with this illness can understand. Much Love, Carol