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By Alan Cocchetto, NCF Medical Director (Copyright 2013)

From Summer 2013 Forum

There are many physicians who have suggested that an unusual response to stress is at the heart of CFIDS/ME health problems. Others, primarily on various websites and blogs, have suggested that if Dr. Henry Heng finds genomic instability, the next step might be to find what is triggering the genome to undergo such drastic changes. Hey folks, we're already here. We've already stated the cause for our NCF patient cohort. We've even defined the various tests that are most applicable to this cohort. Our dots do connect. Our research is not fragmented but continually grows to connect other dots. This effort has been directed to bring forth a relevant disease model and with it, appropriately directed drug therapy that has been long overdue. Unfortunately for those on the web who think that science operates by some kind of popularity contest or via popular opinion, I can honestly say "good luck with that." The NCF has worked diligently to rigorously pursue the underlying science of this disease on behalf of all patients worldwide by putting its money where its mouth is… that is by funding medical research that connects the dots in the CFIDS/ME disease process. So I say to those who have been ignoring our radiation connection, how about getting in the real game? Just imagine, maybe the NCF's research will truly take us to the end of the rainbow and to the pot of gold. My personal thoughts are that the NCF's cumulative research has been seriously underestimated by the patient community. Fortunately for all patients, science silences skeptics!

Since there are many who have incorrectly interpreted our research findings or have twisted our results to somehow provide new revelations, let me reiterate the NCF's process of discovery and to provide you with a brief but clarified synopsis. First, the National CFIDS Foundation had been pursuing possible ionizing radiation causation since late 2008 or early 2009. Ironically, thoughts about radiation involvement occurred as a direct result from critical communications with two important scientistsDr. Yoshitsugi Hokama* and Dr. Robert Lamb*. Their comments and keen medical observations thrusted the NCF into the pursuit of radiation involvement in CFIDS/ME. We, ourselves, cannot take credit for this.

Next, this led the NCF to consult with a well respected radiation scientist, whom we haven't identified formally. Ultimately, specific patient medical tests were performed, internal radionuclides were identified and the results were then statistically analyzed. This led to a formal 2010 press release that announced the connection between low-level internalized radionuclides and the development of CFIDS/ME. The NCF's patient results were in 100% agreement with the work of other international scientists who had found mitochondrial DNA deletions from patient muscle tissue to be the exact same deletion that was created by cells exposed to ionizing radiation in the lab.

As if this weren't enough, up to this time period the NCF wasn't aware of any other scientific connections between CFIDS/ME and radiation exposure. Then we decided to fire up several internet search engines to see what we could find. Ultimately we located numerous papers that tied radiation exposure to CFIDS/ME. Imagine our surprise when we found other global researchers who were finding and publishing similar clues to this disease. Several scientists were associated with the Chernobyl disaster. No doubt, the Fukushima disaster will bring more information to the forefront. Thus, for the NCF to help to disseminate this information and to educate the patient community, physicians and the general public alike, numerous papers have been placed on our website for direct downloading and reading. It is our intention to update this information as additional discoveries are made.

As you are aware, Dr. Henry Heng received a grant from the NCF and the Nancy Taylor Foundation for Chronic Diseases to study genomic instability. What brought us to Dr. Heng? Simple! We wanted to measure the endpoint damage of ionizing radiation. Spectral karyotyping (SKY) analysis provides one such method to measure this type of damage. Truth be told, the NCF wasn't even aware of the Gulf War Illness "Conspiracy Test" videos until months after we had contacted Dr. Heng! Anyway, here is our take on genomic instability. Genomic instability is directly due to chromosomal damage. Chromosomal damage is due to DNA base damage which is due to ionizing radiation and bystander effects. This type of damage is not due to ordinary life stresses. When you talk about chromosomal breakage and chromosomal translocations, you are talking about cancer. Anyone who tells you otherwise has some swamp land to sell to you if you are interested. One of the reasons that internalized radionuclides have been identified and we believe this to be causative, is that radiation exposure relies on two basic components — dose and duration. In other words, how much were you exposed to via either ingestion or inhalation (the dose) and how long have you been exposed (the duration). Additional factors include what type of radionuclide and what is its half-life. For example, radionuclides that are alpha-radiators have tremendous energy potential but they are not very penetrating in tissues. Some patients have mentioned to me the fact that radionuclides are heavy metals. This is true but you must remember that minuscule amounts of radionuclides can have a profound impact on certain cell types such as stem cells that are found in the bone marrow. Since these levels of metals are so small, this isn't heavy metal poisoning unlike what you would find with lead poisoning due to paint chip consumption by a child. Internalized radionuclides can lead to cancer and excessive exposure results in hematopoietic or bone marrow effects. Many patients have informed us that they now have a formal diagnosis of myelodysplasia which is considered to be a pre-leukemia. Thus, this is the connection to not only leukemia and lymphomas but also to secondary cancers such as salivary gland, thyroid, breast and prostate.

The NCF will be discussing additional ionizing radiation/CFIDS/ME markers as time permits. Let me just say that there are many and they are almost everywhere you look. That's all you have to do is look and you will find them. Even so, we will be pointing out many more in future issues of the Forum.

Lastly, the NCF is aware of several medical publications that are due out soon. These will act to reinforce the scientific connections between radiation and CFIDS/ME. With the completion of this column, I hope that folks will now just get it right!

* Dr. Lamb is John Evans Professor of Molecular and Cellular Biology in the department of Biosciences at Northwestern University as well as a professor at their medical school and an investigator at the Howard Hughes Medical Institute. His many honors include consecutive NIH MERIT awards. Dr. Hokama was a world-reknowned author and professor at the University of Hawaii’s John A. Burns School of Medicine and the federal expert consultant of all agencies of our government. This famous toxicologist found CFS and ME were identical diseases but not caused via nature, why PWC/MEs have life-threatening difficulty with anesthesia and how to avoid it and that the ciguatera assay was a biomarker for autoimmune diseases which included CFIDS/ME.

The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 *(781) 449-3535 Fax (781) 449-8606