When Dr. Anthony Fauci announced in August that he planned to retire from his high-profile positions as President Biden's top medical advisor and as director of the National Institute of Allergy and Infectious Diseases (NIAID) for the past 38 years, the story of his many successes could be found mentioned in most news alerts around the world. Few, if any, mentioned how he purposely ignored the millions of ME/CFIDS patients which he believed were merely psychologically affected and certainly not a serious immune disease that has been scientifically proven since.
I got attacked by ME/CFS as a young child. My daughter was a colicky mess when she was a very young child but she got worse as she entered her teens. I brought her to every doctor possible until her pediatrician set her up with an appointment with the Director of Medicine from Harvard University. He saw her for ten minutes and then came out to see me in a waiting room He told me he knew what she had and it was “Myalgic Encephomyalitis.” I said, “My what?” About 15 years later, I, too, was diagnosed.
The National CFIDS Foundation has, for decades, been adamant about both GET and CBT being not only wrong for those with ME/CFIDS but absolutely detrimental. The majority of physicians who continue to advocate graded exercise and cognitive behavioral therapy are mainly in the U.K. although there are a few who continue to practice this in the U.S. despite scientific discoveries about CFIDS/ME that shows the illness to be in the chronic immune area.
In late February of this year, Japan’s Governor Masao Ucibori said at a press briefing about the Fukushima Daiichi Nuclear Plant, “We’re still just very near the starting line.” The owner of the plant, Tokyo Electric Power Company (TEPCO), thinks it will be roughly 30 more years to remove the fuel debris, dispose of the contaminated cooling water and disassemble the four reactors after the meltdowns and explosions from the earthquake followed by a tsunami less than an hour later.
The researchers from Chernobyl were absolutely correct when they announced that "CFS" was caused by radiation. They had their work published in a medical journal that our government seemed to bury quite quickly although not fast enough for a few, including me, to get a reprint of the article. Indeed, the entire medical journal where it had been published also went out of existence with no explanation given.
As we soon enter summer, we hope all of us PWC/MEs can enjoy the sunshine from a shady spot as none of us need to further our low-level radiation effects with the UV (ultra-violet) rays being given oif by the sun. By the end of the summer, not only physicians but pharmacists as well will be offering you a vaccination shot for the coming flu season. It’s something I always ignore and I hope, for your sake, that you will as well.
In the winter edition of The National Forum, Volume 2, Number 9 that was published in 1998, I
was quoted: “The goal of the NCF’s existence is to no longer have a reason to exist.” We never
thought it would take this long but we believe that we are actually, and finally, only about two years
from our goal!
An announcement came at the end of October that read, “Dr. David Bell Joins OMF Scientific Advisory Board” yet, directly under the bold announcement the Open Medicine Foundation stated, “Posted on March 22, 2016.” The October announcement even had a video attached where David Bell addressed a very small group of patients. Yet David Sheffield Bell, M.D. knows the cause is radiation and has not been the pediatric “hero” that the Open Medicine Foundation claims
Recently, our own Centers for Disease and Prevention (CDC) said they were turning “CFS” over to the NIH for further work. They stated that it was “shameful” that more research had not been done on this illness. They also said that there is no such thing as CFIDS and that Chronic Fatigue and Immune Dysfunction didn’t exist! Indeed, that is exactly what they did in 1988 when a committee was formed to rename the illness and the trivializing name chosen was Chronic Fatigue Syndrome. Anyone who didn’t agree with the name was told to leave the committee and, indeed, a few honest ones did.
One person, Diane Grant, said, “It’s better to walk alone than with a crowd going in the wrong direction.” The majority of the patient community is excited. Our National Institutes of Health is going to study “ME/CFS.” They tried to cover up how the CDC stated, just months ago, that there is no immune dysfunction in CFS and how ME was taken off of our country’s diagnostic code list nearly two decades ago. Yet the stated hypothesis of the NIH’s study is prove “post-infectious ME/CFS is triggered by a viral illness that results in immune-mediated brain dysfunction.” Don’t be naïve enough to believe that since science has already proven otherwise.
Why is it so difficult for our own government to admit what has already been proven about CFIDS/ME? Why do they refuse to even admit that one of their own federal consultants, when he was funded by our charity, proved in fully replicated research that this was, indeed, an autoimmune disease? Why do they hide what an NIH researcher found years ago — that “CFS” was a slow progression to cancer? Why do they refuse to believe all those who have found the cause of this disease to be radiation such as the lead investigative researcher of Chernobyl?
Hopefully, you’ve already read Mike Reynold’s front page article in this issue that had the title, “Why do They Insist on Hiding the Truth?” If you have, you’re probably asking why our own government (along with the former CAA, now SCI) continue to pretend that “’post-exertional malaise’ is the hallmark of the disease.”
This “message” was written before our medical committee added so much more truth that explains our CDC’s actions in their efforts to bury the truth. If you haven’t yet read the first story in this edition, read it first for a real eye-opener on why they have been so determined to obscure the truth about this disease as well as about Gulf War Illness and how much more knowledge they, along with all the “specialists” for this disease have been hiding.
Systemic exertion intolerance disease (SEID)? No, the National CFIDS Foundation will not accept SEID any more than the NCF would ever accept Chronic Fatigue Syndrome (CFS). The newly named SEID does not apply to those who have immune dysfunction any more than CFS did. Why would our federal government refuse to consider the name of Myalgic Encephalomyelitis in the late 1980’s when the CDC appointed a committee to rename the scientifically proven erroneously named Chronic Epstein-Barr Virus (CEBV)? The answer is simple.
I’ve learned that if one ignores the facts proven, the facts remain unchanged. Life is, indeed, so unfair to the many hundreds, thousands and millions who have done nothing wrong yet suffer daily. Their suffering slowly progresses and it seems endless and too often seems like the “gift that keeps giving.”
To make sure that the numerous scientists were correct when they pointed to radiation as the cause of CFIDS/ME, the Board of the National CFIDS Foundation, Inc., decided to have their entire cohort tested.
Well before the National CFIDS Foundation came into existence in 1997, there was a conference on “CFS” that was held in San Francisco, CA by the American Association of Chronic Fatigue Syndrome (AACFS). An advocacy group from that area sold t-shirts. One had a question mark surrounding “CFIDS” on the front. On the back, the shirt had the following:
“Things a person with Chronic Fatigue Immune Dysfunction doesn’t want to hear:
Does anyone else find it strange that, ever since the NCF announced the cause of CFIDS/ME a few years ago, not one other charity nor any one “specialist” in the world has ever addressed what we continue to be so outspoken about? Did any other charity for “CFS” or “ME” say one word when we funded Dr. Ciaran Morrison at Galway’s National University of Ireland’s Center for Centrosome Biology before we even had the final results from Wayne State University’s Dr. Henry Heng that proved key chromosomal abnormalities in CFIDS/ME?
With all that’s happening with our government (NIH) giving a nearly $1 million contract to the Institute of Medicine (IOM) for them to form a committee to “define”, in our government’s own words, a “Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”, why didn’t the National CFIDS Foundation (NCF) have a speaker to talk at their January meeting? Because we’d rather spend our limited amount of energy exposing the truth via science to find a therapy to help all patients. That’s something we can’t accomplish trying to grab the limelight via advocacy.
As Schopenhaueronce said, “All truth goes through three stages: first, it is ridiculed; next, it is violently attacked; finally, it is held to be self-evident.” We’ve seen scientific proof ignored instead of ridiculed. We’ve seen scientific fact ignored instead of being attacked. And history has proven repeatedly that it takes decades for any new scientific proof to be accepted as fact.
RADIATION CAUSES CANCER
The Memorial List from the National CFIDS Foundation was used in the late 1990's by Leonard Jason, Ph.D. It was found that 1/3 on that list died of cancer. Our Medical Committee reaffirmed via funded research that CFIDS/ME is a very slow progression toward cancer. One excellent paper has already been written by the Nuclear information and Resource Services. The following is a release that the Nuclear Information and Resource Services issued several years ago:
"No science is immune to the infection of politics and the corruption of power." Those words were spoken by the late Jacob Bronowski, a British mathematics professor, biologist, scientific historian, author, poet and inventor. Professor Bronowski traveled to Japan to understand the after-effects of the Hiroshima and Nagasaki bombings. He later became an associate director of the Salk institute.