By Gail Kansky
"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.
"No science is immune to the infection of politics" is why we refused an invitation to take a seat at the federal Chronic Fatigue SyndromeAdvisory Board (CFSAC). They met again in late May and, again, the rhetoric was abundant but the progress, as always, was nonexistent. The International Association of Chronic Fatigue Syndrome (IACFS) now has a new medical journal on "fatigue" although they haven't mentioned the papers that apply to CFIDS ME on cancer related fatigue. Their manual does not include the fully replicated science on why patients have difficulty with anesthesia but, instead, gives one physician's mere hypothesis on anesthesia that could well cost a patient their life. The IACFS, of course, relies on federal funding to hold their conferences.
"No science is immune to the …corruption of power" is illustrated by other charities that use careful and hopeful sounding phrases about their projects yet they do not connect all the already proven scientific facts. One says it is addressing treatments yet no treatment can be really effective for any disease unless and until you expose the cause and base that treatment on what science has proven. While all charities will say this disease is a serious one, until every part of proven science matches up, looking at various causes will never yield results that will help the patient. One charity in the UK talks of connecting all the scientific dots but they leave out so many important and already proven "dots" in their rhetoric. In this country, the CFIDS Association of America's Scientific Director said, "Therapies for ME/CFS are an unmet medical need. This is largely due to the lack of translating the scientific knowledge into meaningful impact for patients." It sounds so good but Suzanne D. Vernon knows that statement is wrong. A treatment cannot be "identified" unless the cause is proven. That's why people with various other autoimmune diseases die so young such as Parkinson's, Multiple Sclerosis, Huntington's, etc. There are several who continue on with the rhetoric of trying to prove what has already been proven with this disease such as it being "autoimmune" (Hokama et al).
The "…science of politics" includes the group led by Dr. Daniel Peterson who is going after "18 viruses, bacteria or protozoa" that have been associated CFIDS/ME despite the work that found a mitochondrial DNA deletion "induced by low-LET radiation" (Dr. James E. J. Murphy et al) that cannot be caused by any virus or any bacteria or any protozoa. Ignoring proven science is not going to help us reach an end to our suffering. And his organization joins so many others to research things already proven or areas that will be of no help to patients.
There are many who catch your attention with phrases such as "Three Simple Steps to Happiness" for those with an illness because, as Dr. Jacob Teitelbaum says, "Your mind, nervous system and immune system are all linked together in a very complex way. It turns out that being happy energizes your immune system…" He merely points to a form of CBT that science never can back up as he gives important "physical components of happiness" such as "Healthy Thyroid, Healthy You." That particular phrase was actually totally disproven scientifically when Byron Hyde, M.D. tested many CFIDS/ME patients and had those positive to thyroid problems surgically corrected. Thyroid problems, he discovered, were a part of this illness. When these patients had recovered from thyroid surgery to, once again, have a normal thyroid, they felt just as sick as they did before which did not lead them to "happiness"! Another asks patients to "HELP WPI FIND A CURE" yet they already know "a cure" will never be possible without knowing the cause. CBT, like other promises that are devoid of science, merely use phrases for what is, essentially, a sales talk that is the death of truth.
The death of truth is not just targeting CFIDS/ ME. It is found in just about all other charities worldwide who understand that proving the cause will lead to a therapy or cure and will end their paid employment. Nobody, of course, wants to lose their well-paying job. To prove this to myself, I went to the website of the American Gulf War Veteran's Association in Sugarland, Texas (www.gulfwarvets.com) to see if they mentioned Dr. Henry Heng, one of the researchers we are currently funding, who found broken chromosomes in GWI and published in 2007. He was not mentioned. How can these veterans ever get better without the true cause targeted and exposed?
Our all-volunteer charity has attracted the attention of many patients who have volunteered to help in areas we needed to go into in great depth. We have no doubt we will get there and only continue to wish we had gotten there many yesterdays ago. We are truly indebted to all our volunteers including our medical director, all members of our medical committee, our webmaster and so many others whose motivation is not monetary, since none are paid, but is the hope of a better and healthier existence for themselves or for someone close to them. Thank you to all members for continuing to help us prove the truth.
The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 *(781) 449-3535 Fax (781) 449-8606