Monday, October 18, 2010

New CDC CFS/ME Website & Dangerous Lies!

New CDC CFS/ME Website & Dangerous Lies!
New name already implemented by the CDC?
This could do more harm then they have done is 30 years!

By: Carol Geraci, Copyright (C) 2010 Do not use without permission.
The new CDC CFS/ME Website is scandalous, dangerous and reprehensible.  The CDC is now adopting the UK’s treatment protocols for CBT, GET, professional counseling and they even say that lifting light weights and stretching can help people with CFS feel better. The CDC is sending doctors to the UK’s St. Barts website for treatment guidelines (including NICE).

They lie about XMRV, serious infections, immune and neurological dysfunction in patients. This is a serious misrepresentation of how severely ill patients are. The CDC CFS website is where treating doctors look for clinical guidelines, testing and treatments. It is also where the media looks for information and your families!

CDC CFS/ME New Website Denies XMRV  
The CDC fails to mention the XMRV studies from NIH, FDA, Harvard, National Cancer Institute, WPI and Cleveland Clinic.  The CDC denies any connection between XMRV and ME/CFS!
From New CDC Website lies -
CDC scientists and colleagues, using a combination of molecular and serologic tests, found no evidence of XMRV in people with CFS or in healthy people.

 Name Change & New CDC CFS/ME Website
Patients are all wondering what is going on with the name change (from CFSAC meeting) to include ME (not to change the name to ME but to include ME).  The name change looks like it actually come from the CDC’s own new website. The CDC already uses the name CFS/ME!
The CDC’s new website- Chronic Fatigue Syndrome/ME http://www.cdc.gov/cfs/toolkit/get.html

The UK created the protocols now being adopted by the CDC! The UK uses the term CFS/ME in all the website and documents.

Could this be the real reason for new name change?  The name change has nothing to do with adopting the Canadian guidelines or using new definitions for the real ME definition.

The new protocol, guidelines and treatments are dangerous for both US and worldwide patients. Subjecting patients to these protocols could cause permanent damage.  The new website is far worse than the old website. Remember the US did not create these treatments protocols nor have they ever been used in the US before! This is dangerous for US and patients worldwide.

Implications & Consequence
So does the new name change make our illness look more serious? Will doctors now take our illness serious? Will we now get treatments, testing and doctors to help us? Will patients be taken serious?

 The new website is far worse than before.

We need real science based clinical studies and treatments. The new website now omits that patients suffer worse than someone with severe as congestive heart failure, end stage renal failure, MS and late stage aids.

The new website is more dangerous, deceitful, misleading and deceptive. Take a look at this new website for yourself and decide. Patients should be outraged. We need to take action now against this website.

Here are some clips from the new website please take a look at it and the link to St. Bart. This is going to hurt the community not just the US but worldwide since all countries are looking at the US for information.
If they go to the CDC they will now thing there is no threat from XMRV they may take the ban off the blood supply. Remember this site is New!

*Please read Note at the end.

CDC CFS Website Main Page – References and links

The GET Guide 2008 by Chronic Fatigue Syndrome/ME Service at St. Bartholomew's Hospital can be helpful in structuring your graded exercise plan. http://www.bartscfsme.org/index.html


CFS Toolkit and additional information for Healthcare Professionals

There are many different types of treatment and management tools available for Chronic Fatigue Syndrome. These include:
·         Professional Counseling
·         Cognitive Behavioral Therapy (CBT)
·         Graded Exercise Therapy (GET)
·         Symptomatic Treatment
·         Alternative Therapies
·         Support Groups
·         Pharmacologic Therapy
·         Sleep Hygiene
·         Pain Therapy
·         Orthostatic Instability Treatment
·         Antidepressants

Toolkit- CBT
·         CBT is used for medical and psychological illnesses. It has also been used to help    people recover from cardiovascular disease, sleep disorders, diabetes, cancer, and orthopedic injuries.
·         CBT has been shown to be effective in CFS.
·         CBT makes patients aware of the stressors that make symptoms worse.
·         CBT is often combined with increased physical activity or gradual exercise therapy.
·         Trained healthcare professionals, such as psychologists, nurses, physical therapists, occupational therapists, can all guide a person through CBT.
·         CBT must be paced, personalized, and tailored to the individual’s level.
·         In order for CBT to be successful, people in CBT must take personal responsibility for change.
·         If CBT is not covered by insurance, people with CFS can substitute a provider who is knowledgeable about CFS. This provider can lead CFS patients to understand how their behavior is impacting the illness, and set up activity and exercise programs that are useful.
Local mental health professional groups, physical and occupational therapists, or health care organizations can be contacted to find a certified cognitive therapist.

Lifting light weights and stretching can help people with CFS feel better.
 People can start with using their body weight (for example, raising their arms) and gradually increase to wall push ups, modified chair dips, and toe raises. Strengthening activity should precede aerobic activity.http://www.cdc.gov/cfs/toolkit/get.html

CDC lies about XMRV and CFS

Note:
CFSAC’s members in the last two hours of the conference seem to be showing concern about patients for the first time. I appreciate the concern they showed.

CFSAC members cannot change the name of an illness. Only the CDC can do this. So did the members already know in advance the CDC was changing the name CFS/ME? It is very clear from the CDC website they are adopting the name change long before the members took a vote. The CDC website already used the term Chronic Fatigue Syndrome/ME. Did members do this to appease patients? Are they trying to calm patient actions down and letter writing campaigns? Are they trying to make us feel like they are finally doing something to help us? Remember this was a three day meeting and only in the last two hours did they begin to really speak out of concern.

The new CDC website is also listed on the CFSAC’s website! It is still listed under the podcast so any doctor, family member or anyone who goes to CFSAC’s site can see the new CDC website. Would you want your doctor or anyone to see what is on this website?
 Also, do not  forget CFSAC did not invite Dr. Mikovits to speak. Nor did they speak about XMRV, 5,000 scientific studies, HHV-6a, CMV, other infections or immune and neurological dysfunction.

Many speakers continued using the word “Chronic Fatigue” to describe patients. Not one CFSAC member asked anyone to refrain from using this term. If they care about us why would they allow us being called “Chronic Fatigue” for three days? Why just in the last two hours did members express concern and act like by voting on changing the name was some historic moment when the CDC already used the term CFS/ME many months ago on the new website?

For the CFSAC members not to denounce, condemn and reprimand the new CDC website shows they are compliment with the CDC and not looking out for our best interests. The CFSAC’s own agenda also seemed in line with the new CDC website.

If CFSAC members care about patients like they say they do, they need to get the CDC to remove the new website immediately. The new CDC website needs to be abolished.  It is Urgent the old website be put back immediately!

We need to take Action Now! 

May the flame of fire unite love in our hearts, may patients unite together, may we show tender care and kindness towards each other now more than ever.  No matter what country or what the name is called, we are all suffering at the hands of corruption, may we stand together as one force and be united in our cause now more than ever.

Carol Anna Geraci


 Please help! All patients need to be involved! All ideas welcome.



We are looking for a name for to stop this- This could do more harm then they have done is 30 years!

Abolish New CDC CFS Website Now
Remove New CDC CFS Website
CDC CFS/ME Website Lies – Remove NOW
Stop CDC CFS/ME New Website
Abolish New CFS Website Now

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?

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.
  
CFSAC FIVE YEAR PLAN
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:
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.

 http://www.hhs.gov/advcomcfs/meetings/presentations/carolgeraci.pdf

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

CFSAC Meeting  October 29-30, 2009 meeting- Original Speech
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 25 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. The CDC has been shown up as having been grievously wrong for the past 25 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, and retroviral infections, fevers, 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 and punished 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?  This is mass murder to allow patients with ME/CFS to suffer severe suffering and torture for over 25 years. No medical treatments and no clinical studies in over 25 years for such a server debilitating illness. Someone with ME/CFS feels everyday like someone who is dying from late stage Aids (Dr. Loveless). Yet the CDC does nothing? Dr. Loveless testified to congress in 1995.  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? 
Why the cover up? Tuskegee Experiment
My best friend use to tell me that we were a human experiment in 1990. I did really understand what she meant.  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. 
As 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 you have been watching us suffer and die. How can you 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.
Is ME/CFS another experiment? I wonder.
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 but those who did nothing will be judged. Those who did nothing but watch millions of sick and severely disabled people  being mistreated, abused and neglected will be judge one day.
The CDC and whoever is involved in this crime justice must be served.
Reeves and Wessely will be shunned from society in your old age.  Your children will be haunted by what you have done. 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. It is criminal what the CDC has done to call gravely ill patients mentally ill.
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 get Congress to conduct hearings on the travesty of how this What the CDC,  Dr. Straus, Dr. Wessely and Dr. Reeves have done is criminal. 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.
 How long do you think you can get away with mass murder and torture for over 25 years?  For that is what this is discrimination of severely disabled people – many who are women.

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. I had no idea behind closed doors the CDC was telling everyone that ME/CFS was a physiological illness. This is outrageous.
 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, 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 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 and care for myself.Do you know what it feels like not to be able to walk, talk, move your arms and legs and not be able to get help?
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”. 
 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.

CFSAC FIVE YEAR PLAN
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 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. This is a crime.

Recommendations for your 5 year agenda:
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 Nuro-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.   Let us try retroviral medications.  Patients are not children and if someone has been ill for 20 years they can sign waivers for any risks. 
12.   CDC must reconize how severely ill patients are
13.   Stop all studies not relevant to treatments.
14.   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 you 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.
Carol G