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By Donna Sumner and Bob Harrington

It has been ongoing for quite a few years and our own government has made sure that it is full steam ahead in their endeavors to change chronic fatigue syndrome into a psychological entity. Their own highly funded national awareness campaign, a collarborative effort between the CFIDS Association of America (CAA) and the Centers for Disease Control and Prevention (CDC) has resulted in misinformation and outright debunking of actual scientific discoveries. Their highly successful campaign of misinformation has been carried by media and medical journals. It's been mentioned many times before in this newsletter and continues to aggressively deceive.

JAMA (The Journal of the American Medical Association) had a August article (Vol. 300, No. 6) called "Adverse Health Conditions and Health Risk Behaviors Associated with Intimate Partner Violence-United States, 2005". The article was also in the CDC's own MMWR report (2008, 57) in case anyone missed it in JAMA. Intimate Partner Violence (IVP) is associated with threatened, attempted or physical or sexual violence by a former or a current partner. Of course, those with any chronic illness are even more at risk than others to physical violence and we know the numbers are slightly higher with any disease. However, the CDC's editorial notes in this paper go further and explains there is a "link between violence, stress, and somatic disorders (e.g., fibromyalgia, chronic fatigue syndrome, temporomandibular disorder, and irritable bowel syndrome" that they claim "has been well established." They are talking about stress responses "that have been linked to various chronic diseases, including cardiovascular disease, asthma, diabetes, and gastrointestinal disorders" but they do not call these "somatic disorders". According to MedlinePlus and the Merriam-Webster Dictionary, somatic relates to "affecting the body especially as distinguished from the germ plasm or psyche". A somatoform disorder is said to be "any of a group of psycholgical disorders (as body dysmorphic disorder or hypochondriasis) marked by physical complaints for which no organic or physiological explanation is found and for which there is a strong likelihood that psychological factors are involved." There are "no entries found that match somatic disorder" according to these sources.

The CDC and the CAA have promoted cognitive behavioral therapy (CBT) and exercise (the first treatment that will do no good and the second that can actually make you worse) for "CFS". If you have a problem with your immune system and actually have neurological symtoms, such as testing positive for the ciguatera epitope, you do not have what the CDC and the CAA now call "CFS". The CFIDS Chronicle has not used the word "CFIDS" inside their CFIDS Chronicle in recent years but only talk of "CFS" and, in their summer edition, they promote both exercise and CBT in a bit of a disguise. One article is called "Taking Steps Toward Physical Therapy" that states "Exercise is a reasonable and necessary component in the management of CFS. It can relieve pain, prevent deconditioning and gradually improve function." All true if you have a disease that is CFS but if you actually have myalgic encephalomyelitis (ME) or CFIDS (chronic fatigue immune dysfunction), it has been found to worsen your symptoms and increase pain. They are even slightly more circumvent while promoting CBT. They list only 3 studies in their "Research News" and two are about CBT and, of course, positive reports. Don't look for any other research news that was actually important in their summer issue. In comparison, The National Forum reported on 12 different medical journal articles in their summer edition. One reported on thyroid malignancies and another reported on a genetic study by the UK's Dr. Jonathan Kerr (et al) that told of seven subsets in "CFS/ME" where "each subset included neurological, hematological and cancer expressions" and excluded any patients that had any psychiatric disease. This pointed to our own research endeavors as being right on target in funding neurological, hematological and cancer research! Their President and CEO, K. Kimberly McCleary, wrote that "researchers around the world are working to develop objective markers to define subgroups of CFS" but doesn't mention one subset, CFIDS/ME, since her group ignores that along with the CDC. The Chronicle also had no mention of the work by the John A. Burns School of Medicine who found that the ciguatera assay is a marker for autoimmune diseases but, of course, they've never mentioned any of the work that has been funded by the National CFIDS Foundation nor, for that matter, has the CDC. Yet the CAA touts their ongoing $1 million campaign to "accelerate research"! How can any amount "accelerate" if they continue to ignore what has already been scientifically proven?

The CAA brags about their article that appeared in the Journal of the American Academy of Physician Assistants (JAAPA) that tells how to differentiate "CFS" from depression and the work by the CDC and their group. Isn't that what the NIH differentiated between in the early 1980's (Demitrack et al) yet refused to publish until they were forced into it? Is that progress? But the new Empirical Definition that the CDC uses, that was so soundly attacked by Dr. Leonard Jason, "Problems with the New CDC CFS Prevalence Estimates", on the website of the IACFS (but the IACFS carefully distanced themselves from it as, in Dr. Jason's own words, they "do not represent the views of the IACFS/ME") presents "CFS" as a psychological disease that has no neurological features. It is what the CDC now studies and what is being promoted by the CAA. The new scientific director of the CAA, Dr. Suzanne Vernon, is one of the authors of the Empirical Definition (BMC Medicine, Reeves et al., 2005, 3:19). National Public Radio's Scott Simon spoke on this new "CFS" for a congressional briefing last May at the behest of the CAA and mentioned the "four million people" that this new Empirical covers vs. the one million that CFIDS/ME attacks. Scott, a friend of Seabisquit author, Laura Hillenbrand, was joined by others that have, it seems, bought into the new psychobabble definition, including Dr. Anthony Komaroff and Dr. Lucinda Bateman.

Psychology Today had an article on their website called "Is it all in my head?". When one person wrote to the editor, instead of reply, she found the article, which was among their "5 Top Picks" available, was taken down although other articles, such as one on Lyme Disease, were still there. The letter Eileen Sheehan of North Carolina sent said, "I am the mother of a psychologist. When I became seriously ill on October 19, 1989, and never got better, he told me the mental health field did not believe there was such a disease then known as Chronic Fatigue Syndrome. It is very unfortunate that your magazine does not accept real life experience articles because you might learn something. With reference to the significantly large e-mail response to 'Is it All in My Head?', May-June 2005, it would be worthwhile to have a follow-up investigative report on the damage done by physicians, psychologists, psychiatrists, the CDC&P, NIH and the original patient support group. The late Dr. Stephen Strauss, NIH psychiatrist, called very sick people a bunch of 'attention seeking fruitcakes'. Graded exercise therapy (dangerous) and cognitive behavior therapy (think positively about the help you're not getting) is pathetic advice. Fortunately I've found a group that takes this illness very seriously and had hoped you'd be interested, but understand a query would not be welcomed by you." Their answer was much like the CDC's answer to scientific advancement. Their silence was deafening.

Is it any better in the UK? Not according to Margaret Williams of ME Action. She recently wrote an article called "Zombie Science in ME/CFS where she told of mental health researchers at The Institute of Psychiatry in London undertaking a study of "social cognition". They are studing anorexia and CFS to see if the social cognition is "unique to anorexia or reflect more global symptoms of phychiatric ilness". The NICE Guidelines in the UK suggest the same treatments (CBT and exercise) for CFS and our own CDC happily links to those UK's guidelines. The Guidelines are from the Wessely School of psycobabble making "CFS/ME" into a psychosomatic disorder which is exactly the same direction of our CDC and the group that is so heavily funded by them, the CAA. Margaret cites an article by the Editor-in-Chief of Medical Hypotheses (July 2008), Dr. Bruce Charlton. He writes, "In the real world it looks like most scientists are quite willing to pursue wrong ideas - so long as they are rewarded for doing so with a better chance of achieving more grants, publications and status." He explains how psychobabble is advanced, "The zombification of science occurs when science, based on phoney theories, is serving a useful but non-scientific purpose (so it is) kept going by continuous transfusions of cash from those whose interests it serves."

As in the U.S., there is no U.K. government funding for serious science in the field of CFIDS/ME. However, studies on psychobabble are well funded on both sides of the big pond.

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