AWARENESS DAY 2016
From Summer 2016 Forum
May 12th Awareness Day for 2016 was observed by many of our members in various ways. Many told us about the posters they had put up in their town libraries and stores while others observed it in different ways. Audrey, from Arkansas, passed out papers about CFIDS/ME outside a grocery store and also gave out blue ribbons. The grocery staff were all wearing blue ribbons that day! This first article below was sent to the Wall Street Journal for publication but they gave no response and the same thing happened with the New York Times and the Boston Globe:
BE AWARE OF ME!
May 12th is International CFIDS/ME Awareness Day. The date was chosen long ago by a very ill activist, the late Tom Hennessy, in memory of Florence Nightingale’s birthday. Tom spoke truth to power, but power did not listen. His petition to Congress, signed by thousands of patients and friends, was ignored.
In his honor and for all patients, I call attention to Chronic Fatigue Immune Dysfunction/Myalgic-Encephalomyelitis at every opportunity because the truth is ignored, it is not pretty and it needs to be told.
I've had this dreadful disease (aka Living Hell) for twenty six years. It began the morning of October 19, 1989, when I woke up and thought I was dying. It felt like an elephant was crushing my chest, my head hurt, my throat was sore and I ached all over. We planned to leave that afternoon for my husband's 40th high school reunion. It was my high school, too, so we both looked forward to seeing old friends several hundred miles away. I urged him to make the long trip alone. We didn't know it then, but I wasn't going very far for a long time. Except to bed. Except to doctors.
When repeated blood tests are all normal and other tests all negative, you are not believed. You go from doctor to doctor in search of answers and help, but none of them believe you either. It gets even worse if your family or friends think you must be kidding. You don't look sick. My own son, like many other psychologists, thought it must all be in my head. That really hurt. I wasn’t able to work, but claims for disability payments were turned down. I vowed to prove them all wrong, but had no idea how that would happen. Thanks to my supportive husband of 62+ years and the National CFIDS Foundation (NCF), that is my mission.
Fast Forward to November, 2003: I found the National CFIDS Foundation on the internet and its president, Gail Kansky, mailed a few articles to me. It had taken fourteen years to find someone who understood and suddenly I wasn't alone any more! Even better, the timing was perfect for me to participate in a research project they were funding. Professor Alan Cocchetto is NCF's Medical Director and a patient. An engineer by training, he is a brilliant possibility thinker and he connected some very important dots. Dr. Yoshitsugi Hokama is a prominent toxicologist, retired professor of pathology, and federal consultant. I read in the NCF newsletter, The National Forum, that Dr. Hokama thought Alan's proposed project was ridiculous, but he wanted the Medical Director to quit pestering him. After testing just one blood sample, Dr. Hokama asked for more.
My husband bought everything needed to get my blood sample safely packed for its trip to Hawaii. FedEx printed a special label for the box and he handed it to a driver later that evening. The "CFS Profile Test Results" were confidential and faxed to participants' physicians. The final report was amazing. Every sample blood cell was taken apart and they were identical. Those results were replicated before publication in a medical journal and proved a nasty neurotoxin was in our blood. We have been poisoned. (J Clin Lab Anal 6/2003, Hokama et al and J Toxicology 12/2003, Hokama et al)
April, 2016: The disease that was formerly known as Chronic Fatigue Syndrome (CFS) has been a political football kicked around since the 1980s. Ironically that was the same time period of the HIV/AIDs epidemic; however, they ultimately got a therapy but CFS did not. Hillary Johnson wrote "Osler's Web: Inside the Labyrinth of the Chronic Fatigue Epidemic". It begins with outbreaks in 1984 and covers them for ten or more years. One example is that Harry Reid was very concerned about the effect on the Nevada tourism industry when people — even whole families — became suddenly and mysteriously ill in Incline Village, NV. It was a relatively small town with only two doctors, but it had a posh ski resort frequented by the affluent. Thus the epidemic became known as "Yuppie Flu". It appeared to be caused by a very contagious virus. Now we connect the types of tests conducted in the state of Nevada with many people in the same place at the same time. Federal government investigators followed every outbreak closely and we assume they took copious notes. What did their reports say?
The truth is we are sick because of the danger that accompanies nuclear power when radiation leaks. Radiation could be found in water, food, or air and carried by wind or raindrops. The list goes on. It has no taste or odor, so none of us will ever know when or how we were exposed. Instead of looking for a treatment leading to a cure, countries were so overwhelmed by its potential damage, they attempted to dismiss the problem at our peril. Psychobabblers find it's so much easier to write people off as mentally ill and not consider a physically disability.
The NCF was ten years old when it was my good fortune to have discovered it. When several members of the original patients’ support group realized nothing of value was accomplished with its funds, they broke away. The membership consists of patients and others who donate money or contribute in other ways with a genuine interest in moving forward. It is a non-profit charity that refuses government funds, and its goal is to go out of business as soon as possible. They generate their own funding for specific, ongoing research. Of course, the staff is unpaid volunteers!
In closing, I want to say to those doctors and researchers that withheld information so we could suffer longer, “Have you no conscience or shame?”. To the members of IOM and other useless committees, “Why do you ignore scientific truth?” To all government health agencies, “We deserve better and you let us down.”
The Web address is http://www.ncf-net.org/ and email info@NCF-NET.org
Another member from Australia mailed a letter she wrote on May 12th and the letter is reprinted below:
Prof Anne Kelso,
Dear Professor Kelso,
I have had this illness for decades (the last three decades when I reached the chronic stage) and have spent a lot of time reading the research. At times it has been obvious that those with little knowledge of the problems associated with the illness receive grants and consequently their work often is lackluster and leads nowhere. Some still feel that the Epstein Barr virus is involved yet 90% of the population have EBV.
A Professor of Neurology, Professor Mastaglia of Perth, applied for two grants in the 1990s and received two knock backs. This was regrettable because there is a strong neurological aspect with links to the brain and this is what he would have been keen to research; he has since retired.
Due to the lack of interest and understanding in the 80s and early 90s, I was forced to travel overseas to see a doctor, Dr. Jay A. Goldstein in California, who was specializing in this illness. I could not believe the difference as his knowledge was profound; he has also since retired. He was responsible for introducing brain spect scans as a method of testing patients' brains along with another doctor and found a decreased blood flow to the brain. In fact he achieved such a level through his research that one other researcher said "he is way above my head" after having read his books. The books are: Betrayal By The Brain, Tuning The Brain, Chronic Fatique Syndromes: The Limbic Hypothesis, A Companion Volume to Betrayal By The Brain by Katie Courmel. The You Tube video on the brain connection to the illness explaining inflammation can be seen at: www.youtube.com/watch?v=1p6UojKL010.
I have felt a great deal of disappointment when either the same ones receive the grants or others with little to offer do as well. Professor Ian Hickie, who has previously researched this illness, does not impress me, I am afraid. Dr Goldstein was using Oxytocin for his patients and when this was announced a few months ago as helping MS patients, Professor Hickie spoke about what a great thing this was despite Dr Goldstein having used it 20 years ago for ME/CFS. When I emailed Professor Hickie to tell him, he did not reply. He was well aware of Dr Goldstein's work as they appeared at the same conferences so I really am shocked it took him so long to recognize the drug was beneficial.
I hope there will be greater advancements in the future.
The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 *(781) 449-3535 Fax (781) 449-8606