In medicine, we like to live by a rule first articulated by William of Ockham, a 14th-century Franciscan friar, that the simplest explanation is often the best. In medicine that usually means that most of the time, a symptom can be explained by a single diagnosis. Not so in this case. Indeed, it was in talking about this case that I came across what is known as Hickam's dictum, a saying attributed to Dr. John Hickam, a 20th-century physician and teacher: "Patients can have as many diseases as they damn well please."
Saturday, August 11, 2012
Friday, August 10, 2012
by MARY MASTON, COLUMNIST
AUGUST 9, 2012
Jeanne Hyatt is 56-years old and lives in Florida. On the outside, she
looks like any other normal, healthy person. She could be your aunt,
your next door neighbor or one of the ladies in the garden club.
Things are not always what they seem however; Jeanne is not healthy.
She has an extensive medical history which includes fibromyalgia,
chronic fatigue syndrome and chronic bursitis in both of her hips,
which requires the use of a cane when she walks. Jeanne also suffered
a severe case of endometriosis, which resulted in infertility and four
laparoscopy surgeries. She was hospitalized with her neck in traction
for a week due to an automobile accident, and was stung on her left
foot by a sting ray two years ago and still experiences pain in that
Jeanne also has a condition called neurally mediated hypotension,
which is known as "the fainting reflex." It occurs when there is a
miscommunication between the heart and the brain that causes an
abnormally low blood volume in the heart's ventricle. This causes a
sudden drop in blood pressure which drains the body and the brain of
energy. Because of this, Jeanne suffers with frequent dizziness,
sometimes passing out, and this condition affects her vision and
causes extreme fatigue. She has severe insomnia too.
"I wake up every morning in pain. It feels like I was just run over by
a steam roller or like someone beat me up," Jeanne told me. "It's not
in any one area, but over my entire body. Everything hurts.
"It's mostly muscle-type aches but it is also joint aches and sharp
pains over my whole body; like little lasers are attacking me,
sometimes in my shoulders, sometimes in my hands, my legs, my arms,
neck, every place imaginable on the body, constantly throughout the
day. It never stops or goes away. It's relentless."
Even menial tasks such as folding a load of laundry or going to the
grocery store leaves Jeanne's muscles aching and forces her to be
bedridden, sometimes for several days. She has to do simple things
like bathing and getting dressed in increments, resting after each
task is complete before attempting another one. Vacuuming her small
apartment puts her in bed for a week. Everyday things that most take
for granted are torturous for her.
Florida's Pharmacy Crawl
Some would say Jeanne has endured a long streak of bad luck. Since the
state of Florida initiated a war on drugs, that streak continues to
plague her every single month.
The full column can be read here:
Thursday, August 9, 2012
Dr. William C. Reeves, Who Sought Cause of Fatigue Syndrome, Dies at 69
By DENISE GRADY
Published: August 8, 2012
Dr. William C. Reeves, an epidemiologist who fought his own federal
agency to obtain funds to study chronic fatigue syndrome, then
infuriated patients with the ailment by suggesting that it was linked
to psychological problems rather than a virus, died Friday at his home
in Atlanta. He was 69.
The cause has not yet been determined, his son, Will, said.
Earlier in his career Dr. Reeves helped confirm that cervical cancer
was caused by a virus. But from 1992 until 2010, at the Centers for
Disease Control and Prevention, he directed research on one of the
most contentious subjects in medicine: chronic fatigue syndrome. At
least one million Americans have the condition, which causes severe
fatigue, muscle and joint pain, sleep problems, difficulty
concentrating and other problems. Its cause is unknown, symptoms can
last for years, and there is no effective treatment. More women than
men have the syndrome, and many people who have it feel brushed off by
doctors, labeled neurotic or malingering.
When Dr. Reeves took charge of research on the syndrome, patients and
advocacy groups had been complaining that the government was not
taking it seriously or trying hard enough to find its cause. Dr.
Reeves believed the disease was real, and many patients were gratified
when, in 1998, he revealed that officials at the disease centers had
spent money intended for chronic fatigue research on other diseases,
and had lied to Congress about it.
In 1999, Dr. Reeves's claims were confirmed: a report by the Office of
Inspector General found that from 1995 to 1998, $8.8 million allocated
by Congress to chronic fatigue had gone to other diseases like measles
and polio, and another $4 million could not be fully accounted for
because of murky bookkeeping. The figures added up to more than half
the total meant for chronic fatigue. As a result, the C.D.C. agreed to
restore the misspent money to the chronic fatigue program, and Dr.
Reeves's boss was transferred to a different job.
But patients and advocacy groups became increasingly disillusioned
with Dr. Reeves and the direction of C.D.C. research. Many patients
believe that research should focus on looking for viruses or other
infections that might cause the syndrome. But Dr. Reeves grew more and
more skeptical, saying the data did not support that approach. Studies
that he led suggested that stress and a history of physical, sexual or
emotional abuse were contributing factors, angering many patients.
"He tried desperately hard to find the etiology, whether it was
physiological or an infectious disease or whatever," said Thomas M.
Folks, a former colleague at the disease centers who is now the
associate director for research resources at the Southwest National
Primate Research Center in San Antonio. "But his research just
continually led to a noninfectious etiology."
Patients also resented his resistance to changing the name of the
syndrome to something that sounded more medically legitimate than
"chronic fatigue," and deplored his use of a case definition that many
said cast too wide a net and included people who had depression, not
chronic fatigue syndrome.
"He was a very talented and brilliant man who was very opinionated and
often did not express his opinion with tact," said Dr. Elizabeth R.
Unger, who succeeded Dr. Reeves as chief of the chronic viral diseases
branch at the disease centers.
A growing chorus of bloggers and advocacy groups denounced Dr. Reeves,
and in 2009 an advisory committee to the Department of Health and
Human Services recommended "progressive leadership" for the chronic
fatigue program. In 2010, without public explanation, the disease
centers assigned Dr. Reeves to a new post as senior adviser for mental
health surveillance, and put Dr. Unger in charge of chronic fatigue.
The cause of the syndrome remains a mystery. Results are expected
within the next few months from a major study designed to find out
whether viruses or other infections somehow touch it off.
William Carlisle Reeves was born March 27, 1943, in San Francisco. His
mother was a teacher; his father, also named William Carlisle Reeves,
was dean of the school of public health at the University of
California, Berkeley, and a leading expert on arbovirology, the study
of insect-borne viral diseases like dengue, yellow fever, encephalitis
and West Nile disease.
"His father practically invented arbovirology," said Dr. C. J. Peters,
a former C.D.C. colleague of the younger Dr. Reeves and now a
professor of tropical virology and emerging infectious diseases.
"Being the son of somebody like that isn't easy, and I've often
wondered how much of his flamboyance was related to the fact that he
wanted to show he was independent."
Dr. Reeves earned a bachelor's degree in 1965 from the University of
California, Berkeley, an M.D. in 1969 from the University of
California, San Francisco, and a master's degree in epidemiology in
1975 from the University of Washington in Seattle. From 1977 to 1989
he worked in virology and epidemiology in Panama at the Gorgas
Memorial Laboratory, which was supported by the governments of the
United States and Panama. It was there that he led a study, the first
to use samples from a large population, which confirmed that there was
a link between cervical cancer and infection with a sexually
transmitted virus. In 2003, the Panamanian government gave him its
highest scientific honor.
Besides his son, Will, he is survived by his wife of 46 years,
Barbara; a daughter, Myra; two brothers, Robert and Terrence; and two
Dr. Reeves was an award-winning amateur photographer and an avid
outdoorsman who threw himself into kayaking, white-water canoeing,
hiking and caving. He had been out kayaking the day before his death,
his son said.
Monday, August 6, 2012
superiors at CDC and HSS have joined in his lack of empathy, caring and
duty to our country. Not one CDC head has ever taken any interest in our
fate or in managing the departments they are charged with managing. It
is understandable that Dr. Unger, as his long-time colleague and
subordinate, has been slow in pulling away from Dr.Reeves' ill-conceived
orthodoxy. It is for that reason that after Dr. Reeves was promoted
sideways due to researchers' and patients strong complaints, we all
petitioned Secretary Sibelius, Dr. Francis Collins, Dr. Thomas Frieden,
Dr. Koh, and others to name a new chief for "CFS" at CDC instead of
acting chief Dr. Unger. It is not that Dr. Unger is not intellegent or
capable. It is that the entrenchment of Dr. Reeve's intellectually
corrupt regime over 25 years required that change be executed by a
person who was entirely free of ties with it. We deserved someone with a
strong background in biomedical sciences, a record of research
achievement, and some prior success in management of pioneering
research. A serious head-hunt should have been conducted, scouring
places such as the Rockefeller Institute, Cleveland Clinic, university
medical centers,etc. It really wasn't fair either to us or to Dr. Unger
that she should have had to be lumbered with cleaning up a mighty mess
made by a progenitor she had worked so closely with and who, until the
other day, remained in the same institution. We needed someone fresh and
Let us remember that Dr. Reeves has left undone essentially all
important work that needs to be done on the disease that struck Incline
Village in 1984-85, and struck many others elsewhere, before and since.
He shirked his duty to his country.
He did not do the job he was paid to do.
Nor did those before him, who misappropriated the moneys Congress allocated.
CDC has yet to do any real epidemiology on the disease. Their prior
gestures have been something out of Road Runner cartoons by Warner Bros.
The relationships with Abt and Emory are too monopolistic and exclusive
have yet to produce anything serious and important. They should be
Basically there has been no real management evident at CDC for as long
as I've been ill, which is 23 years now. That helped Reeves to get away
with his negligence and distortions.Under Bush Julie Geberding
squandered millions on architecture and interior design. Now she is
Merck's head of vaccines, and is doing a brilliant job of maintaining
support for their vaccine products from CDC. Under Obama Tom Frieden
made an initial effort to get rid of the excess interior bling she left,
but seems not to have followed with the needed management overhaul. His
accomplishments in New York and so far in Atlanta have been the broad
strokes of preventive public health such as banning smoking in our New
York bars and restaurants; he seems less interested in delving into
tangled mysteries like our disease or undertaking management restructuring.
Now let us pray:
For statistically very significant epidemiological study, including all
biological dimensions, of the seriously ill bedbound, housebound, and
near-housebound patients with "CFS"or M.E.
For equivalent major epidemiological study of the wider cohort of
patients beginning at north Nevada and the other five major outbreaks of
the 1980s and working up to a national distribution from there. This
must be extensive, in person from the start, and relying biological
parameters. No telephone surveys and no unrepresentave skews like
Reeve's Georgia-only studies.
For an immediate re-write of the CDC web material so that it cites work
on biomarkers and symptoms (immune,viral,genetic,neural,
gastrointestinal) and at the same time eliminates harmful and disproven
recommendations for CBT and GET.
For CDC guidelines on "CFS" and ME patient precautions before and after
For overhaul and removal of key NIH personnel who have blocked research
and funding for the past 25 years, wrongly exiling "CFS" from NIAID. (It
is now the only disease common to men that had to find refuge under
For the epidemiological studies to result in thoroughly documented and
well-defined name or names.
For at least $150 million per year in research grants for biomedical
research, including biomedical treatment and cure.
stop following the publication of these results
For over a decade now, some individual patients with Chronic Fatigue
Syndrome (CFS)* in Great Britain and Ireland (and probably elsewhere)
have been pressurised by insurance companies into undertaking graded
exercise therapy (GET) and the form of cognitive behaviour therapy
based on scheduling increases activity. This seems to have been
largely due to hype around the efficacy of GET and CBT and
extrapolations from subjective measures, as the evidence that such
interventions are efficacious in restoring the ability to work is
A lot of the evidence has been summarised in a review (1). For some
reason this paper is quoted sometimes as justifying claims it is
evidence-based to say that GET and CBT have been shown to restore the
ability to work in CFS. However the data is far less impressive. It is
summarised in table 6. The accompanying text says: "Among the 14
interventional trials with work or impairment results after
intervention, there were too few of any single intervention with any
specific impairment domain to allow any assessment of association."
The PACE Trial is by far the biggest trial of these therapies in the
field. It shows neither CBT nor GET led to an improved rate of days of
lost employment [Means (sds): APT: 148.6 (109.2); CBT: 151.0 (108.2);
GET: 144.5 (109.4); SMC (alone): 141.7 (107.5)] (Table 2) (2). Neither
CBT nor GET led to improvements in numbers receiving welfare benefits
or other financial payments (Table 4). These results are in contrast
to the self-reported improvements in fatigue, physical functioning and
some other measures (3).
This information comes a few years after a major audit of Belgian CFS
rehabilitation (CBT & GET) centres (4). The sample size was large,
with over 600 patients with a confirmed diagnosis of CFS (using the
Fukuda et al. criteria (5)) taking part. It "comprised on average per
patient 41 to 62 hours of rehabilitation" It found that "physical
capacity did not change; employment status decreased at the end of the
therapy." Again improvements were found in some self-reported
The ethics of using coercion in medical practice generally is very
questionable. Coercive practices should certainly be very questionable
with therapies where they are plenty of reasons to believe they can
cause harm (6). Furthermore, high rates of adverse reactions have been
reported by patients, particularly with GET (7).
Also chronic fatigue syndrome causes a reduced amount of energy to be
available to individuals. It can be very challenging to be ill with
CFS, trying to balance the different aspects of one's life with
reduced energy levels. People with CFS shouldn't be forced without
good reason to have to do a time- and energy-consuming CBT or GET
course. The data shows there isn't a good reason. Of course even if
the results were better, it's still very questionable whether coercion
is justified: we don't coerce (healthy) people to exercise for at
least 30 minutes five times a week even though it would be good on
average in terms of people's health. Similarly, we don't force people
to drink less than the recommended limit for daily and weekly alcohol
assumption. And just to be clear again, the benefits (in comparison to
the risks) of CBT or GET are not nearly as clear cut as the benefits
(in comparison to the risks) of exercising regularly or avoiding
excesses of alcohol are for people in the general population.
Hopefully the publication of this trial will stop coercive practices
in the CFS field once and for all.
* I'll use the term for consistency.
(1) Ross SD, Estok RP, Frame D, Stone LR, Ludensky V, Levine CB.
Disability and chronic fatigue syndrome: a focus on function. Arch
Intern Med. 2004 May 24;164(10):1098-107.
(2) McCrone P, Sharpe M, Chalder T, Knapp M, Johnson AL, et al. (2012)
Adaptive Pacing, Cognitive Behaviour Therapy, Graded Exercise, and
Specialist Medical Care for Chronic Fatigue Syndrome: A
Cost-Effectiveness Analysis. PLoS ONE 7(8): e40808.
(3) White PD, Goldsmith KA, Johnson AL, Potts L, Walwyn R, et al.
(2011) Comparison of adaptive pacing therapy, cognitive behaviour
therapy, graded exercise therapy, and specialist medical care for
chronic fatigue syndrome (PACE): a randomised trial. Lancet 377:
(4) [Fatigue Syndrome: diagnosis, treatment and organisation of care]
KCE Reports 88. (with summary in English). Accessed: 6th August, 2012.
(5) Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A.
The chronic fatigue syndrome: a comprehensive approach to its
definition and study. International Chronic Fatigue Syndrome Study
Group. Ann Intern Med. 1994 Dec 15;121(12):953-9.
(6) Twisk FN, Maes M. A review on cognitive behavorial therapy (CBT)
and graded exercise therapy (GET) in myalgic encephalomyelitis (ME) /
chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and
not evidence-based, but also potentially harmful for many patients
with ME/CFS. Neuro Endocrinol Lett. 2009;30(3):284-99. Review.
(7) Kindlon T. Reporting of Harms Associated with Graded Exercise
Therapy and Cognitive Behavioural Therapy in Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome Bulletin of the IACFS/ME.
Competing interests declared: I work in a voluntary (i.e. unpaid)
capacity for the Irish ME/CFS Association
2. Reduce Medical Errors by Thinking Like an Airline You can subscribe to an e-mail newsletter about developments in health policy at mayoclinic.org. And find out more about patient safety reform from the National Patient Safety Foundation, npsf.org.
3. Get It Right the First Time Inquire about a second-opinion program at your job, or encourage your employer to enroll in one like Best Doctors at bestdoctors.com.
14. Save Primary Care Connect with others and help save primary care at the AMA Patients' Action Network, http://patientsactionnetwork.org/index.aspx.
16. Visit a Virtual Doc Find out how to reach a doc 24/7 at americanwell.com.
IN SHORT ORDER -- PANDORA
by In Short Order
Sun, August 5, 2012
On Sunday, August 5, 2012, BlogTalkRadio's "In Short Order" host Sue
Vogan spoke with Marly Silverman, Dr. Andy Kogelnik and Kenneth
Friedman, PhD about ME/CFS. Program is archived at the link above.
Sunday, August 5, 2012
I like to treat myself to inexpensive, fun, bright nail polish and cute hair accessories. Even if you're very ill, invest in a small effort to make yourself feel good about yourself. -- Sara M.
* * *
I agree. I have a collection of glitter nail polish that I never could have gotten away with in conservative law offices, and next to the bed is makeup and lipstick in colors that I'd never be seen with outside the house, but just the act of putting it on perks me up when I'm stuck in bed.