chronic fatigue syndrome, cfs, chronic fatigue immune dysfunction, cfids, myalgic encephalopathy, fibromyalgia, fms, Forum,  myalgic encephal, m.e., low blood volume, neurotoxin, orthostatic intolerance, multiple chemical sensitiv, National CFIDS Foundation, chronic fatigue, NCF Forum newsletter, chronic illness

CDC Misleads Nation

By Dan McBride, Bob Harrington and Mike Reynolds

The Centers for Disease Control and Prevention (CDC) published several articles on a small but costly research endeavor in a new and fairly unknown medical journal called Pharmacogenetics.  Along with a press briefing from the U.S.'s principal agency for protecting the health and safety of all Americans, they deliberately gave out misleading and disturbing statements that were carried by the media through the country.  While the research was interesting, it was far from earth shattering but it was their own opinions on it that mislead the national media.  We weren't the only ones that thought so as Science (May 5, 2006) chastised the CDC for shoddy and "incomplete" research.  Of course, Science also finds "CFS" controversial since "The lack of a specific diagnostic criteria...  has led to debate over whether the cause could be an infectious agent, psychiatric, or something else..."  Yet even their own article was in error as they mentioned the $12.9 million that the CDC was supposed to spend on CFIDS/ME and didn't led to a research director  who "lost his job."  No, Dr. Brian Mahy was merely reassigned in the CDC while  Dr. William Reeves pretended to be a hero.

     Four small groups found five single nucleotide polymorphisms (SNPS) in two or three genes which are coded for the glucocorticoid receptor.  They zero in on serotonin and trytophan hydroxylase which are regulated by the HPA axis (hypothalamus, pituary, adrenal) located in the brain.  Of course, we've all heard, for many years, of the disregulation of the HPA axis in CFIDS/ME but the director of the CDC, Dr. Julie Gerberding, said, "It really is the first credible evidence of a biological basis for chronic fatigue syndrome that's come out in 14 articles simultaneously."  She linked this with "escalating science" and the Human Genome Project since they identified "specific genes and gene activities associated with people who have chronic fatigue syndrome."  Does this mean that the CDC's director is unaware of the gene research already done in the past including a gene found in CFIDS/ME by her own agency years ago that was one of the same genes expressed in Huntington's Disease?  Of course, that was published in another little known medical journal and never referred to again by the CDC.  The National CFIDS Foundation, however, brought the information forward in their newsletter.   Is she also unaware of the gene research findings of Dr. John Gow and Dr. Jonathan Kerr who found much more and found it in far more than the CDC's 27 patients?  Dr. Gow not only used rtPCR but also looked at the proteins  that encode them which went much further than the CDC work. Is she unaware of a wealth of "credible evidence of a biological basis" done by the late Dr. David Streeten that tied in glucocorticoids?  Or the "credible" work by Dr. Robert Suhadolnik showing an up-regulated antiviral pathway (2-5A RNase-L) or the more recent work by Dr. Yoshitsugi Hokama finding the disease produces a toxin in the body that was found, by laboratory standards, to be in 100% of all patients?  Anthony Komaroff,M.D. recently stated that there were now over 2,000 papers demonstrating "unequivocally" that CFIDS/ME was an organic disorder.  Why wouldn't Dr. Gerberding know this? 

     Dr. William Reeves, in the press briefing, began with a blatant lie: "The illness was first recognized in the late '80's."  He knows full well that the "illness" was first mentioned in a medical journal in the U.S. in the 1930's when it was called "benign poliomyelitis."  It was recognized by the World Health Organization (WHO) decades before the CDC had to rename the erroneous name that the National Institutes of Health (NIH) chose for it (Chronic Epstein-Barr Virus).  Reeves continued to obfuscate when he said, "For the first time ever, we have documented  that people with CFS have certain genes that are related to those parts of brain activity that mediate the stress response."  We already knew that if we were aware of the work done in Europe and they also found many other genes expressed as well.  And, no, you aren't born with defective genes.  The disease does the dirty work on them.  We've known that patients are in a fight or flight mode because something has attacked their immune systems which leaves part of it highly up-regulated while another part is down-regulated.  And others have found a lot more about genes including one that is expressed that can only up-regulated by a viral cause! When you are sick, your genes change.  Some of the newer papers on what the CDC found point, again, to corticol problems such as one published earlier this year by Yoshuichi, Farkas & Natelson entitled "Patients with chronic fatigue syndrome have reduced absolute corticol blood flow" (Clin Physiol Funch Imaging, 2006).  Another of many was published along the same lines in 2003 using PET (positron emission tomography) scans to observe brain metabolism (J Neural Neurosrg Psychiatry, 74) by German researchers ("Observer independent analysis of cerebral glucose metabolism in patients with chronic fatigue syndrome").  And no press conferences were held or needed to information. 

     Did these 14 articles the CDC publish clarify or confuse?  The latter seemed obvious due to the spin put on them by the CDC.  At the CDC press conference on the publications, Dr. Suzanne Vernon  was asked by Mike Stobbe from the Associated Press about Dr. Kerr's gene reports "from Glaxo and St. George's."  Dr. Vernon's answer was so convoluted that Mike said, "I'm sorry.  I don't understand" and he again asked if the CDC had "found genes that had not been associated with CFS."  Again, Dr. Vernon answered with a non-answer saying "There's differences in the actual genetic make-up --- the DNA code, that could explain the differences in the gene activity."  Did the CDC find something not found by Dr. Kerr and others?  It was never answered. Naturally, most reporters interpreted her answer to mean that PWC/MEs (patients with CFIDS/ME) have a genetic susceptibility to the disease which the CDC has NOT proven nor is it correct! Dr. Vernon is not unaware of this.  It was she, after all, who found the gene associated with Huntington's Disease that she refused to mention and conveniently ignored. This would not, after all, fit in with the CDC's push to have this a simple stress disorder that is shunned and ignored by researchers. While Dr. Kerr's patients were from a "CFS clinic", the CDC spent a total of two days and found, in the end, just 59 patients that fit the 1994 Fukuda criteria  that many world-wide have previously criticized as faulty.  Kerr, by the way, is expanding his study to 1,000 patients and the National CFIDS Foundation is helping to have some citizens from the US diagnosed with CFS to be included in this expanded study. 

     The 2-day study cost was, according to Dr. William Reeves, "about $2 million."  Could the CDC's discovery be used clinically, wondered Joanne Silberner (National Public Radio)?  Dr. Vernon, after the question was repeated, said, "Oh, absolutely.  Absolutely."  "How soon?" asked Ms. Silberner.  "Hopefully, as soon as possible," answered Dr. Vernon using a well known political answer/non-answer.  Rick Weiss of The Washington Post complained that the CDC had not made the 14 papers accessible to the reporters before the press conference, calling the CDC "irresponsible."  Dr. Reeves never addressed the criticism.  We agree that the CDC has been and continues to be "irresponsible."

     Jennifer Corbett from Dow-Jones admitted "ignorance on chronic fatigue" and asked if it was "a real condition."  Dr. Reeves never corrected her for calling a disease by a symptom since his own agency trivialized it by naming it after just one symptom.  He said, "One of the most common stereotypes is that this is a bunch of hysterical upper-class professional white women who are seeing physicians and have a mass hysteria."  He never admitted that his own agency helped to promote that stereotype.  Casia Tsaseka ( asked if CFS was "a legitimate disease" or "a syndrome."  Dr. Reeves said, "I would say that clearly, in the last five years, yeah, there is a, you know, a much improved recognition, overall, of the illness...CFS is not a simple disease."  Last five years?  Why?  Because of the excellent research on the ciguatera epitope, STAT1 and gene research done by others?  Dr. Reeves, answering a question from Helen Pearson (Nature Magazine) explained that the five SNPS found in just two genes clearly "distinguished between the fatigued groups."  Remember, the CDC, in all its wisdom (?), is still studying "fatigued groups."  So now they're down to two genes?  Rick Weiss wasn't satisfied and asked for numbers.  Dr. Reeves said, "Actually, I can't give you those numbers..." but Weiss persisted "But are they up or down, or what direction?  Are they more active? Less active?"  Dr. Vernon, at last, admitted, "These are actually genetic changes" and Dr. Reeves added "Some expression profiles were found...We're not saying yes, I have a marker..."  Aha, so "changes" mean your genes weren't faulty from birth.  But, of course, most reporters, due to the vague answers, reported it erroneously suggesting otherwise.

     And, yes, the papers bring in the dark side of this by mentioning allostatic loads which is how one adapts to stress.  John Rikert (Congress Quarterly) asked if this could be associated with environmental factors.  "No," said Dr. Reeves, " people experience stress, and that can be childhood abuse, it can be childhood infections, it can be multiple injuries --- all the stresses that we experience...determine how your allostatic load may accumulate..."  How does this fit in, we wondered, with the gene expression found by Dr. Kerr that pointed to a virus?  The CDC's seemingly deliberate attempt to undermine and discredit as well as bewilder was seen in the subsequent articles and news reports carried from coast to coast in the country.  After all,  a media release from the CDC had the headline, "Genetic & Environmental Factors Impact CFS Patients."  The source of this release was from an announcement issued from the medical journal, itself!  CFIDS/ME patients are "not able to adapt to the many challenges and stresses encountered through life."  Even the CFIDS Association of America gave their "Part 1 of 4" article on stress in their spring issue. So we're sick because we have an inability to handle everyday stress? That's how this was reported!  The Associated Press reported "Genetics and Stress are Found Linked to Fatigue Disorder."  They reported that "Dr. Reeves said the study demonstrated that people with chronic fatigue syndrome were unable to deal with everyday challenges and adversities including injuries, illness, divorce, and stressful jobs." 

     So we're wimps?  Even the small kids who get this?  Those five year olds just couldn't handle their job stress or their divorces from their spouses?  For all his questions, Mike Stobbes said the illness "appears to result from something in people's genetic makeup that reduces their ability to deal with physical and psychological stress."  Rick Weiss reported  "that finding strengthens the case that some people are born with a predisposition to the condition."  Although the genes of PWC/MEs (patients with CFIDS/Myalgic Encephalomyelitis) are not disrupted at birth, the CDC's own press release disputed this scientific fact!  When commenting on this slanted hype, Derek Enlander, M.D., M.R.C.S., L.R.C.P., who is working with Dr. Johathan Kerr on his genetic studies, said "We will not make a statement that the genome makes a patient more liable to stress as the testing cannot prove or disprove such a thought...Reeves has warped this genetic study.  It is, indeed, outrageous."  Commenting further, he said, "The Journal Pharmacogenomics, a small lesser known medical journal, published a series of 14 articles...reprints were difficult to get but my Mount Sinai Medical School Library obtained them for me...unfortunately, most of the 'CFS' patients did not conform to the standard Fuduka criteria...the genome testing method was technically flawed. the results were not confirmed with tagman PCR...It claimed that the discovered genetic aberration showed a predisposition of CFS patients in stress management.  A quantum leap, as was the statement 'gene signature predicting response to CBT'.  However, this was in line with Reeves previous notion that there was a psych link in CFS...I disagree."

     There were better and worse reports.  Medical News Today reported it a bit more accurately when they wrote, "CFS is also known as M.E.," but they also wrote that many other illnesses and conditions , which are often treatable, make a patient feel chronic fatigue such as..." and they went on to list 18 exclusions which included "myalgic encephalomyelitis!"  If you wanted to learn more, they had a link to the CFIDS Association of America (CAA) who found this clinical study exciting. But, after all, the CAA did not list the discovery of the up-regulated RNase-L pathway or the ciguatera epitope on their recent list of their "Top Ten Discoveries."  By the time you read this, the CDC and CAA will have embarked on a $4 million PR campaign. Or did it already?  Amanda Gardner wrote in HealthDay that the work is "strongly suggesting a genetic basis for the condition."  So CFS is not even a "syndrome" but a "condition."  She ends by saying "More information on chronic fatigue syndrome, visit the CFIDS Association of America."  Sure seems like the kick-off for their PR campaign to us.  It makes us feel this was quite calculated and we've found a more than a few researchers that agree with us lowly patients.  One, Martin L. Pall, Ph.D., Professor of Biochemistry and Basic Medical Sciences, wrote, "There was a time when scientists would be run out of town for twisting or ignoring the facts.  Now, much of it is just PR, you get the press coverage so it does not make any difference whether you have the science behind you...In the case of the CDC, it appears that they figure they will do better the next time Congress makes up a budget by making such claims."

     Remember the days when they told kids they would be protected from a nuclear bomb if they hid beneath their wooden desks at school?  Remember when they told everyone that stress caused CFIDS/ME?  Did you ever hear anyone admit that what they said was wrong?  We're not expecting a retraction of either any day soon from either the CDC or the CAA.  William Reeves has spent many years refusing to get the CDC to produce the actual prevalence on this epidemic and when other studies were completed, they had to adjust their own numbers upward.  In 1996, Reeves refused to be interviewed for Prime Time Live but stated, via a telephone conversation, that there were "no cluster outbreaks" and that CFIDS/ME was "not caused by a virus."  He has told many for years that the illness has no actual cognitive problems and is not serious yet he wrote to the late Joan Irvine, a patient, that it would be prudent not to donate blood.  He was not interested in articles that a researcher tried to give him proving immune dysfunction in ME/CFIDS and in open federal meetings was downright rude in discussing patients although the Department of Health and Human Services refused to censure him for his vile remarks.  Much of this history is documented in Osler's Web by Hillary Johnson.  Do we expect the CDC to do an about-face because science has proved Billy wrong?  Not anytime soon.  We never bought the hype put out by another organization that he was a hero and history keeps proving us right again and again. 

Ed. Note: A full page ad in USA Today showed more groups than just the NCF have their problems with the CDC.  The National Autism Association, Generation REscue, A-Champ, NoMercury, Moms Against Mercury and AutismOne accuses the CDC, based on FOIA Act e-mails form the CDC and FDA, of concealing data.  They are asking for criminal charges to be brought against the officials involved.  Dr. Mercola labeled the CDC the Centers for Deceit Control when reporting on this online.

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