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.