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By Alan Cocchetto, NCF Medical Director — © 2017 — No posting without written permission

From Summer 2017 Forum

Here we are staring at the summer of 2017 and it has been a battle to get to this point in our research efforts to find answers to this complex disease.

Twenty years ago, Gail and Bernie Kansky and a small entourage of brave and determined patients decided to form a new national organization. It was to be one that was free of the usual “BS” and politics but had one basic purpose in mind — to look for a possible cause for this disease and to find answers that would one day lead to specific tests for CFIDS along with the hope to find treatments based on scientific truths.

So here we are.  Twenty years later leading the pack regarding causation, disease modeling and with early scientific knowledge that some of this disease process can be impeded.  To us, this is what can happen when research money is directed in such a fashion so as to form a bridge from one study to another. We don't have the time nor the resources to randomly throw darts at the side of a barn.  We have attempted to be as precise as possible regarding what we fund as well as who we fund and to use each finding to lead us in the direction to overturn another stone for more answers.  Eventually, following the leaf of a tree down various branches to the trunk will lead to the root and that is where we have tried so hard to get to.  You see, research in this field isn't totally random.  Other research provided by independent global scientists will also lead to that same root provided, of course, that we share the same root!  In other words, whoever gets to the main root of this problem, all others will follow and will ultimately end up in the same place… thus, sharing the same core.

Now in science, and especially in medicine, there are many people jockeying for position.  It's your basic crab mentality.  Everyone is trying to get to the top.  No one wants to be wrong and everyone wants to be right.  This coincides with the human ego, I presume. But you must also remember, money is involved and that can also be a motive for some.  However, if you put egos, glory, prestige, money and all of the fluffed feather stuff behind, then what drives the equation to solve a very difficult problem is pure in and of itself — to alleviate human suffering and most notably, the suffering associated with this disease. 

The NCF staffers are few in number and quite frankly, we all want to leave this all behind and retire… to close up shop and call it a day.  Well, we are getting very close to doing so believe it or not!  If we are able to provide a test, provide sound evidence for a disease model and an appropriate therapy that would have to be tested by CFIDS patients in a clinical trial, have we honored our foundational objectives as to why we did all of this in the first place? Knowledge to replace skepticism and doubt?

We have a joke at the NCF and it goes something like this — “Remember, my thoughts and a dollar won't buy you a good cup of coffee!”  Sometimes this is very true.

Let me summarize briefly the NCF's journey which represents the journey of all patients who have supported and encouraged our efforts over the last two decades.

In twenty years, the NCF has provided global scientists with research grants that total over 3 million dollars. Trust me, this has been no small feat.

In the first ten years of this journey, the NCF was like everyone else — chasing the viral or bacterial or parasitic bug theories of CFIDS.  Osler's Web served as a template for our initial efforts and we funded a bunch of early work on the bug theories and that yielded two major findings to the NCF's credit.  These were the ciguatera findings of Dr. Yoshitsugi Hokama (University of Hawaii) as well as the findings related to STAT1 deficiencies as identified by Dr. Donald Carrigan, Dr. Konstance Knox (University of Wisconsin) and the late Dr. Robert Suhadolnik (Temple University).

These major stepping stones led to subsequent efforts specifically related to STAT1 by Dr. Robert Lamb, Dr. Curt Horvath and Dr. Thomas Kraus (Northwestern University).  It was Dr. Lamb who suggested that the NCF look for some “other factor(s)” after examining our parainfluenza-5 data.

At the same time, Dr. Hokama had examined over 2500 worldwide CFIDS patient samples for ciguatera reactivity.  Over 95% of these patients were positive.  Dr. Hokama had come to the scientific conclusion that “Mother Nature doesn't do this!”

So there the NCF was.  We were at the crossroads.  Outstanding research scientists, considered to be the best of the best, were really telling us the same basic thing!

After much discussion, the NCF looked to begin radiation testing.  Fortunately, after broadening the net and testing for roughly sixty radionuclides, we found the answer right there in front of our nose - the presence of polonium, thorium as well as various flavors of uranium.  All of these were alpha-emitters.  As we have repeated numerous times, alpha-emitters cause very serious health problems when they have been internalized in the human body.  Previous scientific research has proven this as such.

However, the NCF needed to move to the next stepping-stone in its efforts. If this radiation was seriously damaging, then the endpoint of this damage was genomic instability and subsequent chromosomal damage.  Do our patients have this we asked?  This answer came from Dr. Henry Heng (Wayne State University).  Dr. Heng confirmed that not only did our CFIDS patients have genomic instability but they had extensive chromosomal damage, some of which had never been previously identified in medical science.  Genomic instability results from damage to the progeny of cells.

Though this confirmed our scientific suspicions, the NCF had to approach a radiation expert with all of this data since we were no experts on radiation levels, chromosomal damage resulting from radiation exposure etc.  This led us to the next stepping stone, Dr. Carmel Mothersill and Dr. Colin Seymour (McMasterUniversity).

After examining all of our the data, the McMaster team confirmed our efforts to date.  Our CFIDS patients had been environmentally poisoned!  They were just canaries in the coal mine - sick as hell with no true medical proof and no one to believe them!  Furthermore, there was no “off the shelf test” and there was no treatment.  Even today, there really aren't any viable treatment options for chronic radiation sickness.

This has been the NCF's journey, one that only cares about basic human suffering and the solution to alleviate such suffering. Since Chronic Fatigue Syndrome was first identified by medical scientists at Chernobyl during the 1980's and published in numerous medical journals, don't you think that, given the NCF's own body of research to date, the worldwide patient community begin to at least CONSIDER and ACKNOWLEDGE the very possibility that patients with this disease have been environmentally poisoned by radiation?  Furthermore, is it really too much to ask that other researchers, who are also working in this field, also CONSIDER and ACKNOWLEDGE the very possibility that patients with this disease have been environmentally poisoned by radiation?  Lastly, is it too much to ask that clinical doctors CONSIDER and ACKNOWLEDGE the very possibility that what their own patients are telling them about radiation sickness due to environmental poisoning may be true in their own case?

The NCF's researchers are publishing their findings at a good pace.*  These are preeminent researchers and notable scientists in their own fields.  Eventually, we expect the tide to turn as other global scientists sit down and examine the body of work completed by these NCF funded grantees that confirms earlier work completed by Chernobyl scientists.  Ultimately, scientific truth will prevail as our patient blood, sweat and tears have led to these very facts.

* Regarding the NCF's supported CFIDS autopsy paper by Langford et. al.: Dr. Dianne Langford received her Ph.D. from the University of Alabama.  She did her postdoctoral fellowship at the University of California San Diego School of Medicine with Dr. Eliezer Masliah.  Langford currently is an Associate Professor of Neuroscience and Neurovirology at Temple University. Dr. Eliezer Masliah is also an author on the NCF's paper as well.  In a July 2016 NIH announcement, the National Institute on Aging (NIA), part of the National Institutes of Health, formally announced that Eliezer Masliah, M.D., a leader in Alzheimer’s disease research, had been appointed as the new director of the Institute’s Division of Neuroscience.  An internationally renowned neuroscientist and neuropathologist, he will oversee the world’s largest research program on Alzheimer's disease-related dementias and cognitive aging.

Ed. Note: Ionizing radiation exposure is developed due to tauopathies and Dr. Langford proved CFIDS/ME to be one.


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