By William Cavanaugh and Valerie Fleet

     An investigation into the treatments of CFIDS/ME, called the Gibson Inquiry, has recently been concluded by a Parliamentary Committee in England.  One of the staunch psychobabblers, Trudy Chalder, testified that cognitive behavioral therapy (CBT) "works for chronic pain, chronic diseases i.e. rheumatoid arthritis, cancer, irritable bowel disorders...to name but a few."  I wish I my my friend who recently died of cancer knew this!  Why isn't it promoted as a treatment for any of the other ailments? Chalder has conceptualized CFIDS/ME to show factors that predispose the person making them vulnerable, factors that preceded their current period of unwellness and the factors that maintain it.  An essay by her considers it quite probable that a virus is involved as an initiating factor but, intead of taking past science into consideration, they ignore more than 4,000 articles.  Immune abnormalities were being found and published upon in the 1980's and the authors include some who have found it more profitable to join the psychobabble field ("Immunological abnormalities in the chronic fatigue syndrome," Lloyd, Wakefield, et al.)  Their references merely include other psychotherapists and tell you that a composite patient with CFIDS/ME has a perfectionist personality, an abusive or absent father who was sexually abusive along with a needy mother.  It sounds distinctly like what the CDC's William Reeves has adopted as his new criteria.  For those older, they experience a death of a husband followed by a virus and now "rests" instead of working at a job.  Public income support permits this person to continue her "sick role."

     To be perfectly honest, there are actually two types of CBT.  One respects that a disease has occurred that has no real treatment and helps a patient "cope" with their new, closely restricted lifestyle dictated by this disease.  The other type is based upon the thinking that one's illness is due to the wrong way of viewing their lives or of past bad experiences.  One survey done by the 25% ME Group found CBT was the treatment that was the most unhelpful one offered with only GET (Graded Exercise Therapy) getting worse results.  These are the two treatments suggested by our own Centers of Disease Control and Prevention (CDC).  Both are unproven and GET has been proven to actually be harmful to patients that result in relapses that have been found to last weeks, months, or even years.

     Blaming the patient has always been the easy way out.  Indeed, when the much publicized Incline Village epidemic occurred, it was referred to as the "yuppie flu" despite many becoming sick that were not in the category of rich, vacationing tourists.  The CDC refused to take the outbreak seriously although many of these original patients remain severely sick and several have joined our Memorial List.  In fact, this whole perception of a typical personality can be seen in recent comments by William Reeves about an abusive childhood which were translated into an article by Mary A. Fischer in The Oprah Magazine when past soccer star Michelle Akers now attributes her illness to "some difficult family challenges" and the CDC's Suzanne Vernon promotes this theory by saying "Early life adverse events...can really mess us up and change the architecture of the brain."  Where is the evidence of this?  Why don't most patients fit the "typical" scenario? 

     CBT is pseudoscience.  While it may look like science, it has no scientific implications whatsoever.  A recent book by William Epstein from the University of Nevada explains that "CBT, like all of psychotherapy, is more akin to the mysticism of the mind-cure and faith healing than to clinical science...the theory has a contrived, ad hoc quality...it relies on very uncertain discordant research that only allows box-score summaries of 'many studies' or of 'most research' or of 'most evidence'..." 

     What does this have to do with the CFIDS Association of America (CAA)?  Well, the CDC has used their vast powers of public relations to hold press conferences and get their stories widely distributed in magazines such as The Oprah Magazine and the physicians interviewed in all these stories have close ties to the CAA.  And. of course, the CDC funds the CAA for big bucks annually. 

And they brag about it.  From a 2002 Annual Report of the CAA called "Putting CFIDS First", the CAA brags that "the Association and The Sheridan Group (their lobbyists) worked closely with CDC officials including Dr. William Reeves and report "in collaboration with Emory University researchers, CDC is supporting a separate study using functional magnetic resonance imaging (fMRI) to examine changes occurring in the brain over time..."  Did you read the results?  They were buried as the CDC now admonishes all physicians that any brain tests are "experimental." 

     The CAA brags about how much money they spend on research but, there is no follow-up and no publications that we could find that result from any of the recently funded work going back quite a few years.  The funding is disjointed and the rhetoric is full of promises that never materialize.  In this 2002 report, the CAA funded two researchers.  One, Theodore C. Friedman, M.D., got $155,000 to look at a possible cause of the decreased blood flow to the brain by examining if renin, a hormone made in the kidneys, is responsible.  We could find no follow-up to this work published anywhere and it's now 2007.  Another researcher, Giris Jacob, M.D., from Israel, got funded to look at patients in the very early stages of CFIDS/ME. What did he find?  No follow-up paper was published nor did the CAA let its members know of any results.  And these were the only two researchers funded that year. They claim the work they fund brings "hope" to patients but, if it does, the patients are being fooled.  It is much like the promise of CBT and the hype to promote it.  There's no foundation to base it upon.  In fact, it is cruel and abusive to patients.  By ignoring scientific findings and by not publishing results, the wrong theories can be funded over and over again.  Whether the results are good or bad, withholding these findings do more harm than good.

     But wait, there's more!  The CDC, from the year 2000 to 2003, has had committee meetings to change the definition of CFS in order to make it a mere psychological fatiguing illness and to bypass the much more stringent 1994 research criteria that physicians have relied upon.  They published a paper in 2005* that watered down "CFS" and eliminated any thought of it actually being M.E.  This committee was called the International CFS Study Group and it defined "CFS" by testing 227 patients of whom only 70 had been diagnosed as having CFIDS/ME.  Basically, they separated those "fatigued" from those not "fatigued" while they pretended to be in search of standarized criteria.  Of course, there is no marker yet for this disease so they were able to get away with this.  And who were the members of this committee that has tried valiantly to push back the actual science by decades?  Well, many psychobabblers including the "king" of psychobabble, Simon Wessely and quite a few of his cronies.  Canada's most famous psychobabbler, Susan Abbey, participated along with close to another 40 others.  Some of the names of this committee may surprise you such as K. Kimberly Kenney McLeary (CAA), Nancy Klimas, Benjamin Natelson, and Leonard Jason while others you fully expect such as the CDC's William C. Reeves, Suzanne Vernon, along with four others from the CDC.

     So now you may understand why any research that comes out of the CDC is quite bogus.  They are not actually using people who have met the CDC Research Criteria but are, instead, using an even less stringent version created by this committee that met a few times a year for a few years. The gene study that is receiving the greatest PR treatment known yet is an outcome of this new classification.  What it means is that the research means absolutely nothing and those who are joining the chorus promoting and hyping it are doing none of us any favors.  Without the fanfare of psychobabble known in other parts of the world, the CDC has managed to demote CFS to a wastebasket category.  The Wichita hospital stay used in their highly touted surveillance study included only six patients that fit the Fukuda criteria and those that failed the Romberg Stance were excluded even though experts advise using it along with the Canadian clinical criteria.

     Is anyone listening?  A lead story from the American College of Physicians was titled "The Patient wtih Medically Unexplained Symptoms."  The author, Mark Feldman, M.D.. is from the Presbyterian Hospital of Dallas.  The first sentence of his paper includes a reference to an article in the Lancet  from 1999 by Simon Wessely et al (354:936). To remind you, Wessely said, in 1994, "I will argue that ME is simply a belief that one has an illness called ME."  In case there is any doubt that he is including CFIDS/ME, his second sentence names just a few of these including "fibromyalgia, tension headaches, irritable bowel syndrome, nonulcer dyspepsia, atypical and non-cardiac chest pain, chonic fatigue syndrome" and many more.  What seems most important to him is that "the medical and economic impact associated with the care of these patients is staggering."  He suggests that "enlightened specialists" find the diagnostic criteria is not specific so he implores all that belong to the American College of Physicians to try all on antidepressant medications along with cognitive behavioral therapies, to minimize their referrals and to regard all these "functional syndromes as a group of closely related disorders, rather than splitting them into multiple disorders of unknown cause."  This is the key stragedy of the CDC.  If they group all these illnesses together, they ensure obscurity.  While they tout their national tour to educate others with "The Faces of CFS" and other nonspecific entities, they pretend to care while they encourage no testing and, in that way, not only ignore all science but advise against it on their website.  The director of the CDC, Dr. Julie Gerberding, again mentioned the "groundbreaking new research" that made patients "not being able to cope with ...psychological...challenges."  She bragged about "our partners, including the CFIDS Association of America."

     The CDC seems determined to catch up to the psyhobabble it has encouraged in the United Kingdom.  The draft guidelines from the UK's National Institute of Health & Clinical Excellance (NICE) issued this fall clearly extol CBT and exercise as the favored treatments as does the CDC.  Many who contributed to the watering down of the new definition used by the CDC have contributed, as well, to the NICE guidelines that list ME (and CFS) under "Functional or Psychosomatic Disorders: Medically Unexplained Symtpoms."  Their direction could not be made more clear.

     Just one week after the CAA/CDC held their press conference saying "CFS is a real disease," headlines from coast to coast shouted that childhood trauma was a real risk factor for CFS (Archives of General Psychiatry, Nov. 2006).  Marcia Harmon, an employee of the CAA, told patients online that the press conference was "a triumphant success."  When patients complained about the newest headlines in the study funded and done by the CDC, she posted to patients on an online announcement group that the study had "important limitations" and that the lead author is "no longer affiliated with the Centers for Disease Control and Prevention's CFS Research Group."  But those reading it all over the United States and Canada were left with the information that "early adverse experience" is a "risk for CFS" in a study by the CDC and Emory University.  The author of the acclaimed historical novel on CFIDS/ME (Osler's Web), Hillary Johnson,  posted on that same online group to inquire if Harmon also was "using the CFIDS org's finanical oomph to disseminate a press release to the media that explains the absence of rigor in this research...the story appeared unchallenged on Web.MD less than a week after the press conference."  Ms. Johnson went on to say, "In past years, certainly, epidemiologists at the Centers for Disease Control have had few reservations about jumping all over published research indicating a biological basis for 'chronic fatigue syndrome,' even when leveling ad hominem attacks against the authors when they felt so inclined.  If the agency has switched course, and is now determined to validate the suffering of 'cfs' patients and enhance recognition of the seriousness of this reputedly grossly under-diagnosed disease --- which they recently discovered has a biological basis --- shouldn't the CDC and its pubic relations contractors also be ready to pounce with equal enthusiasm, all over research that undercuts their own newfound thesis? Or does it?  As the headline of Medical Condition News said, "Chronic fatigue syndrome begins with childhood trauma and stress.  Does that bolster the gene study that cited an inability to handle stress as one highly expressed gene that was never verified via PCR testing?  On the other hand, shouldn't that be a critical element of their 'campaign'?"  We have to agree with the author that some of that $4.5 million spent on their public awareness campaign could have gone toward getting out more of the truth instead of continuing to pat each other on the back on how gullible the media is in this country, especially when this newest CDC study was in the news just days after the CAA asked patients to send "a message of gratitude to Dr. Gerberding", the CDC's director. The medical community did not hear about the press conference but they were given the information that the illness "begins with childhood trauma and stress" and one online medical group put this under the category of "anxiety and phobias."

     We admit we were remiss in sending that "message of gratitude to Dr. Gerberding.  Instead, we want to thank you, National CFIDS Foundation, for hearing a different drummer and focusing on real research for a very real disease.  You are our beacon of hope and we depend upon you to remain truthful.

 

 

*"Chronic Fatigue Syndrome - A clinically empirical approach to its definition and study," Reeves et al, BMC Medicine 2005, 3:19.  

 

Bill and Valerie orginally submitted a Letter to the Editor.  We asked them to expand the information and include verification which they did.  Both belong to the same support group in California.