The ME/CFS Worldwide Patient Alliance Puts a Half-Page Ad In WAPO

Remember, the FDA which is the agency that regulates blood banks has know for decades that many scientists were certain Myalgic Encephalomyelitis/Chronic Fatigue Syndrome or ME/CFS was caused by a retrovirus. When I was a supervisor at a blood bank in the 1990s in Tacoma WA we did not allow people with ME/CFS to donate. Why is it we could get to the information to make that decision yet the FDA couldn't?

-Possible New HIV-like Retrovirus in Blood Supply--

CORAL GABLES, Fla., Dec. 6, 2010 /PRNewswire-USNewswire/ -- In an unprecedented move, chronic fatigue syndrome (CFS) patients published a half-page ad in The Washington Post today. The ad brings attention to new, HIV-like retroviruses, including XMRV, which have been linked to CFS and aggressive prostate cancer, and have been detected in healthy blood donors.

The ad was created through the ME/CFS Worldwide Patient Alliance (MCWPA), a grassroots patient collaboration formed in August 2010 with the support of P.A.N.D.O.R.A., Inc. From their beds and wheelchairs, patients spent decades watching researchers, scientists and physicians debate about the cause or nature of their illness. Now, they are adding their voice through a campaign that calls for biomedical research funding, fast-track treatment options and improved patient quality of life. CFS, also known as myalgic encephalomyelitis or ME/CFS, is a disabling, sometimes fatal NeuroEndocrineImmune disease that afflicts more than one million Americans and an estimated l7 million people worldwide.

ME/CFS first gained national attention amidst the AIDS epidemic in the early 1980s. As early as 1991, a retroviral link to ME/CFS was discovered by Dr. Elaine DeFreitas of the Wistar Institute, but subsequent retroviral research was halted by the government. Although more than 4,000 peer-reviewed articles in medical journals have pointed to system-wide immune, neurological, endocrine, gastro-intestinal and cardiac abnormalities, a biologically-based diagnostic definition has eluded doctors. The result has been a catastrophic lack of care, ineffective (sometimes harmful) treatments and a shorter life span for those who are ill. The leading causes of death among patients are heart disease, cancer and suicide. The disease occurs in people of all ages, from children to seniors, and also has a higher incidence rate in families and has occurred in cluster outbreaks.

"This can happen to anyone," said Sita G. Harrison, spokeswoman for the MCWPA. "ME/CFS is devastating and the lack of care has hurt us all. We ask the government and health care agencies that we put our trust in to help the millions of people who are suffering and to fund more research now."

A major scientific breakthrough occurred in October 2009 when the Whittemore Peterson Institute (WPI) at the University of Nevada, Reno, working with the National Cancer Institute and Cleveland Clinic, published the results of a landmark study. The seminal study, published in the leading scientific journal, Science, discovered the third human retrovirus, XMRV, in the blood of 67% of ME/CFS patients and in 3.7% of healthy controls. This suggests that up to 10 million US citizens could already be infected. This finding was later confirmed by the FDA, NIH and Harvard Medical School in a study published in the Proceedings of the National Academy of Sciences. Their results linked a family of human gamma retroviruses (to which XMRV belongs) to ME/CFS at a rate of 86.5% and 6.8% in the healthy population, bringing the total of Americans who may be infected up to 20 million people.

The CDC and NIH have spent thirty years trying to prevent the cause of this disease from being found. I want to know why. They also gave it a silly name in the U.S. so it would not be taken seriously. If anyone knows anything about how the drug companies manipulate physicians they know they are also easily manipulated by government agencies as well as the AMA. Not only do the lies and diverting of research funds need to end, the abuse perpetrated on the people suffering from ME/CFS by physicians needs to end. Some of them will have to be forcefully educated by regulating agencies because many of them choose ignorance. A large part of the suicidal incident which got me arrested and the medical abuse I received in Nome was due to Chronic Fatigue Syndrome. When I got PTSD the cortisol that is released causes the virus to reproduce and be released by cells in the immune system. I became very ill. This causes "brain fog", in other words it is difficult to even think or make appropriate decisions at times. Coupled with the severe PTSD from the workplace bullying I was very disabled. When I tried to get help the doctors refused and were very abusive. Of course this was not just due to prejudice against ME/CFS, this was also due to the lies spread by the two levels of workplace bullies at the hospital in Nome. This disease is very complicated and has a lot of unusual symptoms, many doctors can't comprehend this for some reason. We are all thankful for the ones who do and the ones who even though they did not know what to do for us tried as best they could, being believed is very therapeutic. Being very ill and treated as if you are just imagining it contributes to the suicide of ME/CFS patients.

"The NIAID, the national institute responsible for infectious disease research, has yet to fund XMRV research in ME/CFS or any other disease," explains Annette Whittemore, President of WPI. "WPI has had its last six XMRV-related grant proposals turned down; despite the fact that our researchers have proven XMRV is transmissible and infectious."

MCWPA is advocating for a budget that is in line with other NeuroEndocrineImmune diseases. Currently, only $5 million for ME/CFS research is in the NIH budget, far less than similar diseases such as multiple sclerosis ($l44 million) and lupus ($121 million). Patients also ask for antiretroviral and Ampligen clinical trials that have shown great promise in mitigating the effects of ME/CFS.

For more information, to donate, or for more resources and spokespeople, including leading researchers, scientists, physicians, patients, and historians please visit http://mcwpa.org/.

About MCWPA: Our mission is to create an effective, cutting-edge advertising campaign addressing the poor quality of life of individuals with ME/CFS. By issuing a collective and unified statement, our community will no longer be silent and invisible. The MCWPA ad campaign is supported by P.A.N.D.O.R.A. Inc.™, Vermont CFIDS Association, Inc., R.E.S.C.I.N.D., Rocky Mountain CFS/ME and FM Association and the Wisconsin ME/CFS Association, Inc.
Emphasis added by myself.

Is some drug company wanting the cause kept secret as they develop a drug and don't want competition from other drug companies? Did the government block research, appropriate diagnosis, treatment and prevention to keep people for getting Social Security disability, Medicaid and Medicare? Were these viruses spread through vaccines or some military germ warfare experiments? Somehow somewhere there has to be a reason for intentionally harming a very large number of people while allowing virus to spread that is more logical than cruelty, prejudice and group stupidity for thirty years.

Here is a list of some of the symptoms of ME/CFS from the CFIDS Association (Chronic Fatigue and Immune Dysfunction Syndrome):


Although its name trivializes the illness as little more than mere tiredness, chronic fatigue syndrome (CFS), also known as chronic fatigue and immune dysfunction syndrome (CFIDS), brings with it a constellation of debilitating symptoms.

CFS is characterized by incapacitating fatigue (experienced as profound exhaustion and extremely poor stamina) and problems with concentration and short-term memory. It is also accompanied by flu-like symptoms such as pain in the joints and muscles, unrefreshing sleep, tender lymph nodes, sore throat and headache. A distinctive characteristic of the illness is post-exertional malaise, a worsening of symptoms following physical or mental exertion occurring within 12-48 hours of the exertion and requiring an extended recovery period.

The symptoms of CFS are highly variable and fluctuate in severity, complicating treatment and the ill person’s ability to cope with the illness. Most symptoms are invisible, which makes it difficult for others to understand the vast array of debilitating symptoms with which people with the illness must contend.

Other Common Symptoms

I have highlighted the ones I have had or have now, the symptoms change over time.

Additional symptoms are reported by people with CFS (PWCs) such as word-finding difficulties, inability to comprehend/retain what is read, inability to calculate numbers and impairment of speech and/or reasoning. PWCs may also have visual disturbances (blurring, sensitivity to light, eye pain, need for frequent prescription changes); psychological problems (depression, irritability, anxiety, panic attacks (only after the PTSD), personality changes, mood swings); chills and night sweats; shortness of breath; dizziness and balance problems; sensitivity to heat and/or cold; alcohol intolerance;  (abdominal pain, irregular heartbeat; irritable boweldominal pain, diarrhea, constipation, intestinal gas); low-grade fever or low body temperature; numbness, tingling and/or burning sensations in the face or extremities; dryness of the mouth and eyes (sicca syndrome); gynecological problems including PMS and endometriosis; chest pains; rashes; ringing in the ears (tinnitus); allergies and sensitivities to noise/sound, odors, chemicals and medications; weight changes without changes in diet; light-headedness; mental fogginess; fainting; muscle twitching; and seizures.

There are many other symptoms, some of them are strange like temporary loss of fingerprints. For years I had excrutiating pain everytime I took a breathe, my feet hurt so bad I had a hard time walking, I had severe diarrhea, severe headaches, crazy shifting sleep patterns, restless leg syndrome (and restless whole body sometimes) swelling of my legs and I was very dizzy, but I did everything I could to continue to work. Sometimes I had to cut back to part time or rest a few weeks, going back to full time as soon as I could. I would have episodes of vomiting/diarrhea that would last for hours until I tore my esophagus and ended up in the hosptial. Many of the medications they gave made the dizziness worse. They did not know then we are almost a pint low on blood, so gave meds that exacerbated the problem. The doctors would tell me it was something insignificant and my coworkers would tell me they were wrong because I looked like crap and had weird symptoms. I had a low grade fever for years. We had a rule that if a patient in the ICU had a fever that was not higher than mine we did not call the doctor because there I was working with a higher fever. The running joke was that I was sicker than a lot of the patients. The PTSD from the workplace bullying did me in, otherwise I would have kept working. Of course being a nurse put me in danger due to the immune system problems, but doctors told me this was not true, so I caught one virus after another and had severe constant pulmonary/sinus infections. It was the antibiotics that caused the severe diarrhea.

Now even though my sleep is still crazy I can sleep when I can. I am eating an extraordinarily healthy diet and taking lots of supplements. XMRV and the other mouse retroviruses associated with CFS cause cancers, especially lymphoma and prostate, this is one reason for the diet change and supplements, giving my body what it needs to mount a defense against cancer. I have taken supplements for years for this reason and was unable to take them while homeless and struggling to find a way to survive on social security, that put me in a lot of danger. I take no meds except an OTC allergy pill. I have researched what foods cause pain and which prevent it and this has helped my comfort level immensely. I have been able to figure a way to get exercise by doing it periodically while I am awake. It took years for me to even be able to read much after what happened in Nome as well as the wrongful imprisonment, harm to my cat, theft of my property (No justice for any of it) severe abuse in the prison system and homelessness (BTW, they told me CFS isn't a real disease at Hiland Mountain, so they refused to treat it). I normally read and did research all the time, so it was very depressing to have my brain not work for years. Now I am generally reading tons of articles on line every day and several books at a time.

I feel much better and my brain functions on a higher level. I look very different now and have lost weight. I did this by myself, every doctor I have seen in Alaska knows nothing about ME/CFS or is abusive to me because they don't think it is real. I had an MRI in Homer only because I insisted due to neurological symptoms so bad I looked like I had MS. It showed brain lesions which is exactly what I suspected. The doctor told me the MRI was normal and tried to block me from reading the report. After reading the report I made an appointment with a neurologist who after testing told me she could not say I don't have MS. Now, she knew I have CFS which can look identical to MS and CFS brains can have lesions. Her diagnosis was the brain lesions were caused by my headaches. I told her I was not buying the headache theory. This was after she insisted I have a sleep study to rule out sleep apnea when CFS and Aspergers both carry erratic sleep problems. I am on my own completely with this. I am thankful to all the scientists, physicians, organizations and patients who post information I have been able to use to get healthier. The PTSD has gotten better, but incidents coming up in the future could trigger the retrovirus. It is my hope that my body will be stronger and I will tolerate the flare up better. Now that I can get enough sleep by just sleeping when I can my immune system should function better.

1 comment:

Anonymous said...

So glad to hear the ad was in the Washington Post. It's time someone listened to the patients for a change. After nearly 20 years of having this and thinking time after time that the government and dr's (or anyone, for that matter) would listen to us, I'm afraid to get hopeful anymore.