Friday, August 22, 2008

Here's the Proof

For some time now, a battle has been raging in the comments to this blog about my statement that AIDS was at first considered psychiatric, and certain parties' refusal to believe that.

Unfortunately, I can't computer-search the comments, so to avoid having to repeatedly retype the quotes on which I base that statement, I'm going to put it here in the main part of the blog, where I can easily find it when I need to repeat it again:

"The parallels in the history of the recognition of AIDS as a specific disease and the recognition of CFIDS are remarkable.  For years physicians and health care administrators said that no illness could explain [the symptoms].  BECAUSE PATIENTS WITH AIDS WERE DYING, IT WAS FINALLY AND SOMEWHAT RELUCTANTLY AGREED THAT THIS CONSTELLATION OF UNUSUAL SYMPTOMS AND EVENTS WAS NOT PSYCHOSOMATIC.  And with the discovery of the HIV virus, a theory could be put forward that explained these findings."

Dr. David S. Bell, Harvard educated, professor at Harvard Medical School
"The Doctor's Guide to Chronic Fatigue Syndrome", pp. 17-18. 

I have previously provided other quotes, from Osler's Web, in the comments sections.

However, like so many people, these commenters stubbornly refuse to accept any evidence that proves they are wrong, and continue to demand that I provide more and more quotes, while providing no evidence of their own to disprove my experts.

I welcome my other readers to provide any quotes they have on this subject.  If you're unwilling to have your name published, you can just e-mail me, and I'll post it under my own name.

MORE:

Katrina Berne, Ph.D. (Licensed Clinical Psychologist)

"Many diseases are labeled psychiatric or "stress" disorders until causal agents or illness markers are identified, at which time they graduate to the status of legitimized, genuine illness." p.124

"Before the causative agent of HIV disease was identified, the medical community was baffled by patients with such various disorders as Kaposi’s sarcoma, wasting syndrome, and PCP pneumonia, which were not initially recognized as presentations of the same underlying illness. The shift came only when a causative agent was identified..." p.138

Chronic Fatigue Syndrome, Fibromyalgia and Other Invisible Illnesses: The comprehensive guide

 

Dan Peterson, M.D.

"It’s easy to publish a negative study in this disease... I could say ... ‘these people have a psychiatric disorder,’ and I promise you they would take that. My model for that is AIDS. ... When I was first in practice, when that disease was being disputed, it was the same kind of argument. It just happens that people with AIDS die, and so the scientific world was stuck addressing the issue. I swear, if AIDS weren’t a fatal disease, we would still be having the same argument about it." Osler’s Web, p. 504-505

 

Wells Goodrich, clinical professor of psychiatry, Georgetown University

"There was an obvious precedent for the mistreatment of CFS sufferers... ‘We know that the stage of medical confusion for AIDS lasted five years, from 1978 to 1983...’ Prior to 1983, however, AIDS victims suffered the from the same negligence to which CFS patients were now subjected." Osler’s Web, p. 585

 

Paul Cheney, MD, describing the bell curve of diagnosis

"In ‘82, ‘83, and ‘84 ... it would have looked the same for AIDS, because [in the absence of a diagnostic test] it took a while for those people to get diagnosed, too." Osler’s Web, p.142

 

Kimberly Kaye
Like AIDS, MS and Lupus (all of which were attributed to hysteria or psychosomatic symptoms before research proved otherwise), CFIDS has had an uphill battle to fight. 

 

Neuropsychologist, Sheila Bastien, Ph.D.

"Many medical disorders present as psychological disturbances. Pancreatic cancer can cause visual hallucinations. Adrenal tumors will cause behavior that can seem psychotic. So you have to be very careful not to accept psychiatric diagnoses at face value." Osler’s Web, p.111

"Edward Shorter, a history professor, published a book on the subject, From Paralysis to Fatigue.... Thehistorian’s research citations bore the mark of a polemicist whose argument depends on the omission of the entire body of data that is contrary to his conclusion. ... Thoroughly enmeshed in a worldview wherein the medical profession stood unassailable, Shorter was blind to his own and to Straus’s vilification of CFS sufferers. [footnote] With its politicized science and forsaken victims, the CFS epidemic was ripe for Shorter’s exploitation. It was inconceivable, however, that in 1992 Shorter could have found a publisher for a similarly mean-spirited book about multiple sclerosis, lupus or AIDS – all disorders that medical experts had once characterized as dependent upon the victim’s emotional state." Hillary Johnson, Osler’s Web, p. 566

Lobbyist Tom Sheridan:

"I’m always surprised by the level of antagonism the opposition demonstrates, but I’ve never seen that level of vitriol, not even in AIDS." Osler’s Web, p. 588

"agency officials were reminded of the early dismissal of the AIDS epidemic." Hillary Johnson, Osler's Web, p.603

 

 

Medical experts to contact for more information if you don’t believe me, include:

Paul Cheney (The Cheney Clinic, North Carolina), Dan Peterson (Nevada), Jay Goldstein (California), Carol Jessop (California), Mark Loveless (Oregon Health Sciences University), Nancy Klimas (Nancy.Klimas@va.gov), Anthony Komaroff (www.Harvard.edu), David Bell (www.DavidSBell.com), Leonard Jason (LJASON@depaul.edu), Derek Enlander (Denlander@aol.com), Benjamin Natelson (www.umdnj.edu)  (website/e-mail given where I have it myself)

Failure to contact these doctors will simply prove that you are afraid to learn that I am right and you are wrong!

Thursday, August 21, 2008

Professor Schweitzer explains Lies, Damn Lies and Statistics

In the interests of being forewarned ...

I have twice in the last few weeks heard a reference in the media to someone having "fatigue syndrome."

Why would that be of concern?

In ICD-10, which is the next set of WHO codes for diseases (the U.S. is the only industrialized nation still using ICD-9), both CFS and Myalgic Encephalomyelitis are categorized in the neurological chapter at F93.3  [The WHO schedule of codes is particularly important in the U.S. because although it was designed to be able to match diseases from one nation to another, in the U.S. it is primarily used for insurance reimbursement - those are the tiny numbers your doctor's receptionist puts on your records for billing.]

ICD-10's inclusion of CFS in a code that had belonged to M.E. since the late 1960s left Simon Wessely, a British psychiatrist who is convinced that "CFS" is psychosomatic, without an acceptable psychological code. So he adopted the term "fatigue syndrome," which is formally coded in "neuroses" at G48.0, with the formal name "neurasthenia" (a term not included any more in U.S. psychological textbooks, but originally coined to refer to the "nervous condition" supposedly common among women in the Victorian Era - goes with "swooning.")

The U.S. CDC has been slipping away from the Fukuda definition by revising the WAY CFS is diagnosed - not by looking for four of the eight symptoms listed in Fukuda, but by using a questionnaire that was supposedly demonstrated to be effective by "correctly" diagnosing CFS patients in a two-day Wichita hospital stay in 2003.

However, the article describing that two-day hospital stay clearly states (in the tables - not so clearly in the prose), that of 58 patients who were diagnosed with CFS in the Wichita Surveillance Study according to the Fukuda guidelines, only 6 still could be diagnosed with CFS using those guidelines. Another 4 could be added, but that would mean they only had 10.

[See < http://www.biomedcentral.com/1741-7015/3/19 >, "Chronic fatigue syndrome-a clinically empirical approach to its definition and study"]

So they rediagnosed the whole bunch, using the new questionnaires.  They ended up with 43 "CFS" patients.  But it was a tautology - the Wichita two-day hospital stay "proved" that the questionnaires identified "CFS" by using those same questionnaires to diagnose patients in the first place. 

The new studies to emerge from Atlanta used the questionnaires from the Wichita hospital stay.  Thus, they do not diagnose CFS-Fukuda - they diagnose what can only be called CFS-new definition or perhaps CFS-Reeves. 

Another study using the new questionnaires "proved" that there was no difference between patients who complained of "chronic fatigue" and patients who had "CFS" (new criteria) with regard to two critical symptoms in the Fukuda definition - cognitive dysfunction and sleep disruption.

Furthermore, the CFS-new definition patients did not have NMH/POTS.

The questionnaires do not exclude patients with depression.  Technically, an international study had recommended that patients who had a bout of depression that had resolved SEVEN YEARS BEFORE THE ONSET OF CFS could be included, but in the Wichita study, that little requirement that there be seven years BEFORE the onset of CFS wasn't mentioned. So the new questionnaires also include some patients with depression.

The result?  Estimates of "CFS" that match Simon Wessely's - 4-7 times as many as would be predicted using the Lenny Jason-DePaul study that was published in 1999. 

Why would that be a problem?  If the CDC wanted to "test" whether a particular disease or condition or biomarker was associated with "CFS", they could use their questionnaires to come up with a heterogeneous mishmash of patients who all have "fatigue," but not what was named "CFS" back in 1988.  They have already done so with an article that insisted NMH/POTS was not linked to CFS. 

And now we are hearing about "fatigue syndrome."  That would complete the transition to the British psychological school of CFS.  [The British psychiatric version is where "cognitive behaviour therapy [CBT]" and "graded exercise therapy [GET]" got their start - although, intriguingly, the studies that were supposed to prove the efficacy of both turned out not to be very robust, even though the data set was "cooked" - statistician-ese for a data set that is put together to get the results you want.]

So keep a lookout on and watch out for the phrase "fatigue syndrome."

And keep pushing politicians to focus on BIOLOGICAL TESTING, OBJECTIVE BIOLOGICAL MARKERS (not questionnaires), and TREATMENTS.

Mary Schweitzer

--

ERRATA
I apparently had a brain hiccup and mixed up the WHO ICD-10 codes for "chronic fatigue syndrome" and "fatigue syndrome."

So here they are corrected:

ICD-10:

G93.3  (not F93.3) is where M.E. and postviral fatigue syndrome are listed, and if you have a copy of the index (it is not on WHO's website but I have a FAX of it at home) you will see that "chronic fatigue syndrome" is coded there, too.

F48.0 is "neurasthenia," and "fatigue syndrome" is coded there.

I had never heard the phrase "fatigue syndrome" used in the U.S. before, so two references in one months caught my eye.

The main problem would be that "fatigue syndrome" would code as a neurosis and also as "neurasthenia", which is the old-fashioned "nervous condition" that women used to be diagnosed with a hundred years ago.

Sorry about the error. 

Mary Schweitzer

* * *

There's a previous post in this blog about not necessarily trusting research results, and Mary's analysis here is along the same lines.

If you are doing your research on patients who have depression, then you're not going to find information useful in treating post-viral CFS.  And, unfortunately, too many researchers have an ulterior motive, and the patients in their CFS studies have everything *but* True CFS.

In selecting which CFS research to post here, I try to limit it to those studies that are researching what Mary and I have, what Doctors Cheney/Bell/Peterson consider CFS, and not those that are loaded up with patients who are simply fatigued from overwork or depressed.  Sure, there are those who claim that their research "proves" exercise cures CFS, but I can tell you from 21 years of experience with this disease that exercise makes my symptoms worse.  Even at my best, I no longer had the stamina I did before, and by orders of magnitude that can't be explained away with mere aging (and certainly not being just 3 months older than I was before I had the virus, or one week older than when I relapsed).  On the other hand, I lived with a depressive, and saw first-hand that exercise can produce energy/euphoria in someone who has depression.  So, I can say with some certainty that if exercise makes you feel better, you don't have what I have ... even if your doctor *did* tell you it's CFS.

We are moving toward a biomarker for the disease.  People who actually have depression who were misdiagnosed with CFS (and vice versa) will finally get the right diagnosis and the right treatment.  And all the psychologizers who've made a living saying CFS patients are "just depressed" will be proven wrong and watch their reputations fall in shambles.

Meanwhile, remember that not every research study purporting to study CFS actually studies what Mary and I have.  Read critically and skeptically, especially the patient selection criteria.

CFS: Viral Brain Infection

 Medical Hypotheses          Vol. 71, #2, pp 270-274    August 2008
http://www.sciencedirect.com/science/journal/03069877


Is chronic fatigue syndrome caused by a rare brain infection of a common,
normally benign virus?
-------------------------------------------------------------------------
Bjorn Grinde(*)
* National Institute of Public Health, P.O. Box 4404, Nydalen, 0403 Oslo, Norway
  Tel.: +47 22042420; fax: +47 22042447. E-mail address: bjgr@fhi.no


Received 15 February 2008; accepted 10 March 2008


Summary

Chronic fatigue syndrome (CFS) is a disabling disease of unknown aetiology. A
variety of factors have been suggested as possible causes. Although the
symptoms and clinical findings are heterogeneous, the syndrome is
sufficiently distinct, at least in relation to the more obvious cases, that a
common explanation seems likely. In this paper, it is proposed that the
disease is caused by a ubiquitous, but normally benign virus, e.g., one of
the circoviruses. Circoviruses are chronically present in a majority of
people, but are rarely tested for diagnostically. Normally these viruses do
not penetrate the blood-brain barrier, but exceptions have been reported, and
related viruses cause disease in the central nervous system of animals. The
flu-like illness that often precedes the onset of CFS may either suppress
immune function, causing an increased viremia, and/or lower the blood-brain
barrier. In both cases the result may be that a virus already present in the
blood enters the brain. It is well known that zoonotic viruses typically are
more malignant than viruses with a long history of host-virus evolution.
Similarly, a virus reaching an unfamiliar organ may cause particular
problems.


Introduction

Chronic fatigue syndrome (CFS), also referred to as myalgic encephalomyelitis
(ME), is characterised by a severe debilitating fatigue lasting for at least
6 months (reviewed in [1-4]). The worldwide prevalence may be as high as
0.5%. The pathological findings include immune system abnormalities such as
chronic immune activation, dysfunction of the hypothalamic-pituitary-adrenal
(HPA) axis, brain abnormalities, emotional stress, and evidence of infectious
agents.

The cause of CFS has been attributed to a variety of factors. Although an
infection of the central nervous system (CNS) would seem likely, the lack of
affirmative findings has led to a preference for other theories, including:
psychological stress, disturbances of immunity, endocrine control, oxidative
stress, cardiovascular homeostasis, and systemic infections. Not
surprisingly, genetic constitution also appears to be important [5,6].

A majority of cases report that the onset of CFS was preceded by a
'flu-like' illness. A popular theory is that the infectious agent causing
this illness triggers a chronic activation of the immune system, which
subsequently leads to CFS. Thus, the condition may be caused by a virus in
the absence of any actual infection of the CNS.

Emotional stress may be relevant as it reduces the efficiency of the immune
system, and because it leads to activation of the HPA-axis. In fact, some
practitioners suggest that the condition is solely due to psychosomatic
factors and thus should be labelled as a psychiatric disorder. Although
mental problems are highly relevant in connection with fatigue, it seems
likely that the extreme state observed in many CFS patients have a more
distinct cause; particularly as many of the patients were highly active and
well-adjusted prior to the onset of disease.

With a condition such as CFS, it is inherently difficult to distinguish
between cause and consequences. Yet, an actual infection of the CNS offers a
parsimonious theory. The remaining pathology can convincingly be ascribed as
secondary effects. For example, if the virus causes damage in the
hypothalamus, an effect on the HPA-axis would be expected, as well as a
subsequent impact on immune parameters.

In order to support the present hypothesis one should ideally detect one (or
a few) infectious agents in the spinal fluid in a substantial number of
patients. So far this has not been possible. The present article suggests a
theory that would explain the various observations relating to CFS, including
the epidemiological data and the fact that no convincing agent has yet been
described. Moreover, a strategy for testing the hypothesis is indicated.


Evidence for CNS infection by a common virus

A variety of microbes have been implicated in CFS, including Epstein-Barr
virus, cytomegalovirus, enteroviruses, parvovirus B19, Coxiella burnetii and
Chlamydia pneumoniae [1]. Some of these agents are found in the spinal fluid,
and could exert their effect there, while others are typically found
elsewhere in the patients and might affect the CNS indirectly. Several
outbreaks of CFS (or CFS-related disorders) have been described, and in some
cases particular infectious agents, such as C. burnetii and enteroviruses,
were assumed to be responsible [1,7,8]. Yet, the idea of a CNS infection
causing CFS is not advocate in recent reviews [1­4]. The problem is lack of
consistent finding, and lack of obvious markers, or symptoms, of infection in
the brain.

The present hypothesis suggests that CFS is caused by an infection of the
CNS. The lack of substantial proof indicates that the putative agent is more
likely to be a virus than a bacteria. The hypothesis furthermore suggests
that the culprit is commonly present in humans, but only rarely penetrates
into the brain.

Below are listed observations that are congruent with this theory, and thus
may be considered as evidence in favour.
1. The disease is associated with a disturbance
    of brain function. It is well known that virus
    infections of the brain can cause various
    behavioural changes.
2. Several viruses that normally infect other
    organs, occasionally penetrate into the brain.
    At least two, hepatitis C virus [9,10] and
    Nipah virus [11], have been reported as the
   causative agents in chronic or disabling fati-
    gue of select patients. It is possible that dif-
    ferent viruses can cause fatigue, however, it
    is also conceivable that the actual cause in
    these patients was an unknown virus that
    crossed the blood-brain barrier along with
    the observed virus. Hepatitis C is rare in
    young people except for drug abusers, and
    Nipah virus is a rare zoonotic virus. These
    viruses are therefore unlikely to be responsi-
    ble for more than a few CFS cases.
3. If CFS had been a normal consequence of the
    infection of one or a few rare viruses, one
    would expect a different epidemiological pat-
    tern. That is, the cases should cluster along
    possible infectious pathways. Most cases do
    not. The epidemiology fits better with the
    notion that the event leading to the disease
    is an unexpected crossing of the blood-brain
    barrier of a virus present in most people.
4. Several outbreaks of CFS-like disease have
    been described [8]. These outbreaks could be
    explained by the introduction of a particularly
    pathogenic strain of an otherwise common and
    mostly benign virus. It is interesting to note
    that most of the reported epidemics date back
    50 years or more. It seems likely that several
    viral strains of common viruses, which previ-
    ously were endemic to particular regions, at
    some time started to spread worldwide. In
    the case of circoviruses, for example, the
    genetic variability within a local population is
    close to the variability observed worldwide
    [12,13]. Presumably, the genetic diversity
    was originally due to independent viral prolif-
    eration in different regions. Thus the present
    local variability is best explained by a recent
    worldwide mix of viral strains.
5. If present in the majority of the population, it
    implies that the causative virus is normally
    benign. However, even if the virus does not
    cause overt symptoms when circulating in the
    blood, it may very well do so upon entering an
    organ for which it is less adapted. The situa-
    tion would be a parallel to the observation
    that the more severe viral diseases (e.g.,
    HIV, Ebola, SARS and bird-flu) are caused by
    zoonotic viruses. Viruses with a long term
    relationship with a host, or in this case cer-
    tain organs, generally develop a more benev-
    olent profile.
6. A number of viruses fit the description of high
    prevalence, continuous replication and nor-
    mally benign nature; including members of
    the Anellovirus genus of circoviruses (TTV,
    TTMV and TTMLV) and the polyomaviruses
    (BK and JC). Circoviruses and polyomaviruses
    are normally associated with other organs,
    yet can penetrate the brain and replicate
    there [14,15]. Polyomaviruses are known to
    cause clinical symptoms in the brain [15]. Cir-
    coviruses have no know pathogenicity in
    humans, but animal circoviruses can infect
    the brain and cause disease, e.g., post-
    weaning multisystemic wasting syndrome in
    pigs, a condition with certain similarities to
    CFS [16].
7. CFS is typically preceded by an acute systemic
    infection, or by severe stress. These condi-
    tions may cause a virus present in the blood
    to enter the CNS, either by suppressing
    immune function, and thus increasing the
    viral titre, or by weakening the blood-brain
    barrier. It has been shown that immune sup-
    pression causes an increase in the serum con-
    centration of circoviruses [17].
8. Viruses affecting the CNS are reputedly diffi-
    cult to diagnose. Even in cases of encephalitis
    or meningitis where there is reasonable evi-
    dence to suggest a viral aetiology, positive
    findings are obtained only in a fraction of
    cases. The problem may be partly related to
    not testing for the right virus, but most likely
    it also reflects that the relevant viruses may
    cause clinical symptoms in the brain even if
    their replication is low, and thus less likely
    to be detected. In the case of CFS, spinal fluid
    is not routinely tested for any virus; and even
    in cases where standard viral diagnostics are
    attempted, it is unlikely to yield positive
    results.
9. Circoviruses or polyomaviruses have, to the
    author's knowledge, never been tested in
    connection with CFS. These viruses are tuned
    to keep a low profile towards the immune sys-
    tem. If present in the brain, they are likely to
    have a low copy number and not cause overt
    signs of infection. Moreover, the brain is less
    likely to initiate an obvious immunological
    response than are other organs [18]. Yet,
    when carefully examined, some markers sug-
    gestive of infection are found in the spinal
    fluid of CFS patients [19].
10. Mothers of adolescents with CFS more often
    display related symptoms than do the fathers
    [20]. This could be explained by the transfer
    of certain strains of virus during pregnancy
    or birth, which presumably happens in the
    case of circoviruses and polyomaviruses.
11. Treatment with the broad-spectrum antiviral
    agents interferon and Ribavirin have been
    reported to improve the condition of CFS
    patients [7].
12. Although full recovery from CFS is rare,
    improvement can be sufficient to suggest an
    average duration of 5­7 years [21]. The per-
    sistent nature of the disease would be in line
    with the observation that viruses, such as cir-
    coviruses and polyomaviruses, typically are
    chronically replicating in the host. Yet, these
    viruses are partly controlled by the immune
    system, thus a reduction or clearance of virus
    in the brain is possible.


Relevant viruses

Circoviruses and polyomaviruses fit with the above observations, but the
condition may equally well be caused by a range of other viruses.
Picornaviridae, which includes enteroviruses, is a large family of viruses
commonly present in the healthy population [22]; enteroviruses have been
implicated in CFS [7], and several subtypes are known to occasionally infect
the brain. Members of the herpes family and the parvovirus B19 have a similar
profile [1,23]. Over the last few years, several novel viruses have been
discovered. It seems likely that additional unknown viruses are commonly
present in humans. In other words, the fact that no common viral cause has so
far been described for CFS may very well be due to a lack of testing.

Most of the observations listed are also compatible with alternative
explanations as to the pathology of CFS. Taken together, however, the author
considers the evidence sufficiently indicative to warrant further
examination.


Testing the hypothesis

An obvious first possibility is to look for the specifically mentioned
viruses in spinal fluid using a sensitive PCR. A blood sample alone have
minimal value if, as hypothesized, one is dealing with a common virus.
Ideally a blood sample taken at the same time should be available in order to
evaluate whether a positive finding in the spinal fluid could reflect
contamination from blood.

Preferably one should analyse samples taken soon after the initiation of
disease. It is conceivable that the virus cause damage, and is subsequently
cleared from the brain. The damage may heal only slowly. It is, however,
likely that the virus is continuously present. In the latter case, there
should be hope of finding the virus regardless of when the sample is
obtained.

The next step, as to testing the hypothesis, would be to broaden the scope of
virus search. Recent developments with microarrays allows for the screening
of all known vertebrate-related viruses, as well as other microbes,
simultaneously in clinical samples [24]. The method relies on unspecific
amplification of RNA/DNA and subsequent probing of the obtained nuclei acids
onto microarrays containing single stranded DNA probes that capture viral
sequences.

In order to stand an even better chance of finding novel viruses of limited
homology to known viruses, it is possible to run the amplified nucleic acids
on a pyrosequencing machine. Pyrosequencing allows for up to 400 000 sequence
fragments of some 300 basepairs to be obtained from one sample in a single
operation. The obtained sequences would subsequently be examined by a
computer to look for possible homologies with known viral sequences. Even
viruses that have never been described are expected to have some genomic
regions with homology to known viral sequences.

Hopefully, it shall be possible to test the hypothesis in the near future.
The difficult part appears to be obtaining relevant samples. This is partly
because spinal punctuation is not carried out routinely in connection with
CFS patients, partly because of the bureaucratic difficulties in obtaining
older samples from the odd patient that at some time had spinal fluid tapped.


Discussion

The presence of certain virus(es) within the spinal fluid of CFS patients is
not sufficient to prove causality. If, however, the relevant virus is rare or
absent in samples from other patient groups, it would appear to be a likely
trigger. A more direct proof would be to develop antiviral treatment that
both remove the virus and improves the is sufficiently common for the
pharmaceutical industry to invest in developing novel therapy, or possibly a
vaccine.

Even in the absence of treatment, it is of great interest to establish a
causality. Besides the comfort for the patient of knowing what the problem
is, a viral connection would offer improved diagnostic opportunities.


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21 Reyes M, Nisenbaum R, Hoaglin DC, Unger ER, Emmons C,
   Randall B, et al. Prevalence and incidence of chronic
   fatigue syndrome in Wichita, Kansas. Arch Intern Med
   2003;163:1530-6.
22 Witso E, Palacios G, Cinek O, Stene LC, Grinde B, Janowicz
   D, et al. Natural circulation of human enteroviruses: high
   prevalence of human enterovirus A infections. J Clin
   Microbiol 2006;44:4095-100.
23 Kerr JR. Pathogenesis of parvovirus B19 infection: host
   gene variability, and possible means and effects of virus
   persistence. J Vet Med 2005;B52:335-9.
24 Palacios G, Quan PL, Jabado OJ, Conlan S, Hirschberg DL,
   Liu Y, et al. Panmicrobial oligonucleotide array for diag-
   nosis of infectious diseases. Emerg Infect Dis 2007;13:73-81.

Proportional Underfunding of CFS Research

This is from the public comments given to the Chronic Fatigue Syndrome Advisory Committee on May 5-6, 2008, available in full at- http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac080505min.html
  
  It is a very informative accounting on the amount of money spent by the NIH and CDC on CFS compared to other diseases, as well as the financial impact of CFS compared to other illnesses.
  
  ----------------------------
  
  Public Comments  Jennifer, Pennsylvania
  
  Accompanying Document: Public Comments
  
  I sit before you in a wheelchair today because of CFS. I'm not here to tell you about all this illness has stolen from me or about the quality of the medical care that I've received. In fact if CFS was simply a medical problem, I wouldn't waste your time. But CFS is costing our country billions of dollars and is a significant health crisis. I am here to urge this committee to advise Secretary Michael Leavitt of the true scope of CFS and the burden of this illness. I am here to urge Secretary Leavitt to immediately direct his department to mount a meaningful response to CFS. The current level of investment in CFS research is not just inadequate, it is an embarrassment.
  
  CFS costs an estimated $20,000 per patient per year in lost productivity and wages, according to a study published in 2004. The CDC's latest prevalence data estimates a patient population of 4 million, which means the impact of CFS on the U.S. economy is as high as $80 billion per year. That does not include healthcare or disability costs, so we can assume the true cost of CFS is much higher. The annual loss of $80 billion a year in productivity is a significant health problem. With all due respect to the agency representatives here today, your agencies clearly do not allocate resources on a scale commensurate with the problem.
  
  Consider that lost productivity due to diabetes cost $58 billion in 2007. Last year, NIH spent just over $1 billion on diabetes research. In other words, NIH invested 1.7 cents for every productivity dollar lost. If NIH allocated research funds to CFS as it has to diabetes, then a 1.7 cent investment per dollar lost would translate into $1.3 billion dollars in annual research. Apparently NIH believes that CFS does not merit such investment. Last year the NIH spent only $4 million in CFS research—an investment of less than one one-hundredth of a penny for every productivity dollar lost.
  
  Allow me to illustrate this gross disparity another way. There are 20.8 million Americans with diabetes. By spending $1 billion on diabetes research, NIH invested $48 per patient in 2007. In contrast, NIH's CFS research program represented an investment of one dollar per patient. It's well established that CFS patients are as disabled as patients with end-stage renal disease, multiple sclerosis, and AIDS. There is no treatment for CFS and doctors do not properly diagnose us. In contrast, diabetes can be effectively diagnosed and managed and doctors are quite familiar with how to educate their patients to maximize treatment efficacy. But NIH spent 48 times more money per patient on diabetes research than it has spent on CFS in 2007.
  
  The CDC fares no better than NIH in this regard. While the CDC spent slightly more than NIH on CFS research last year, I must bring to your attention that the group published only two papers in 2007 and only one manuscript is in the pipeline this time. This is further evidence of the erosion of CDC's research program about which this committee has long been concerned.
  
  Ladies and gentlemen, this situation is not acceptable. No reasonable person can be satisfied with claims that there is no more money available for CFS research. Money can be found for high priority problems. Our government is capable of addressing threats to our economy by bailing out endangered banks or flooding the market with economic stimulus checks. Yet here is a clearly documented cost to our economy of $80 billion in lost productivity each and every year, and the best NIH can do is spend a fraction of a penny for every dollar lost. This is foolish policy. Our economy needs 4 million CFS patients to return to their jobs, earn their salaries, support their families, and pay their taxes. If Secretary Leavitt has been unmoved by the suffering of patients and their families, then perhaps he can be convinced by the numbers. Do not tell me that we cannot afford more CFS research. The truth is we can not afford not to invest more in CFS research. And to answer Dr. Kitt's rhetorical question about increasing the number of applicants, if you build it, they will come. If there is money, they will apply.
  
  You are obligated to advise the Secretary of the burdens of CFS, not just on individuals, but on the economy as well. You are obligated to tell the Secretary that the two agencies responsible for researching CFS and finding treatments for it saw fit to spend a tiny fraction of one penny for every productivity dollar lost last year. You must convince the Secretary that research spending should be made proportional to the size of the problem. I urge this committee to take whatever steps are necessary to secure meaningful action from the Secretary.
  
  I have been ill for 4,962 days and I am waiting for this committee and the Secretary to act. And I do not wait alone. At least 4 million Americans and their families wait with me. I thank you for your attention.
  
  Dr. Oleske: In your written statement, if you have a reference on the one penny per productive time lost, if that's published anywhere.
  
  Jennifer: Those are my calculations based on publicly available numbers for research dollars spent, prevalence, etc.
   
 * * *

If research money had been available proportionate to the number of patients afflicted, there would have been a treatment for CFS long ago.  Instead, much of what little research money was there, was wasted on trying to find a psychiatric basis for a neurologic illness.  And much of the reason was politics.  Straus having come up with the "depressed menopausal women" theory, his employer was unlikely to want to prove him wrong, so they wasted years looking into depression, stress, and other emotional causes ... results which could only be achieved by polluting their patient pools with people who really did have depression or emotional illnesses, rather than people who have the same symptoms as the Incline Village and Lyndonville epidemics.

When private research funding determined that an anti-viral called Ampligen helped CFS patients, the drug was not FDA-approved (it's been approved for use in other countries by their equivalents to the FDA), for the simple reason that the FDA could not, would not, prove Straus wrong by approving an anti-viral drug for what he had said was a purely psychiatric problem.

Instead of verbally abusing patients because we are applying for Disability benefits, why don't people verbally abuse the government agencies whose refusal to do adequate research has ensured that we are unable to work?  

Yes, the cost of Ampligen treatment is substantial, but it's less than the loss of my economic contribution to the country.  If it were FDA-approved, and the government agreed to subsidize the first year of treatment, I could go back to work and earn enough to pay for the rest of the treatment myself.  Instead, over my lifetime, the government will lose the economic impact of over a million dollars in income that would be spent buying goods and services, and tens of thousands of dollars of taxes paid on that income.   Instead, I buy little more than absolute necessities for myself and my business, and earn too little to even be required to file a 1040. 

The choice to remain sick and unemployable is not mine: it's the government's.   Yet I am the one who takes the flak for their inaction. 

Simple Solutions Don't Take CFS Seriously

How many know that ME/CFS receives only a 10th of the research and awareness that Fibromyalgia does? So that means we are light years away
from letting the average Joe in on what is really going on in their
bodies or their loved one's body if they carry a diagnosis of CFS.

Resources which give simple suggestions for minimizing symptoms, such as
a recent Health Day article
(http://www.healthday.com/Article.asp?AID=617567  ) may be fine for
someone with chronic fatigue (not to be confused with CFS/ME) but many,
many who are diagnosed with CFS are probably afflicted with myalgic
encephalomyelitis and are being a done a grave disservice. People read
an article like this and think that is all they have to do to improve
their health. Meanwhile, the old timers like myself (coming up on 25
years November 6th) know that what we've had is much more serious and
cannot be helped to any great degree by those "suggestions."

If you are helped...GREAT!  But far too many who are more than "tired"
but are very, very sick, just laugh at those suggestions. Truly they
do... as I did a small survey.

Of course, what do we do?  Now here's the thing.  M. E. is not being
researched here. However, in Canada, they developed an ME/CFS Case
Definition that does a pretty fair job of presenting the information for
any doctor to know in diagnosing and treating ME(CFS). The irony is that
one of the authors of this document is one of our best and most
experienced ME/CFS experts. Ponder that a moment.

You can read it at
http://www.mefmaction.net/Portals/0/docs//ME-Overview.pdf  .

You can also read Mary Schweitzer's points on "why" we need to adopt the
Canadian document at http://www.cfids-me.org/petitionlong.html .  Be
sure to check out Mary's link to Melvin Ramsay's definition of M. E. at
http://www.cfids-me.org/ramsay86.html  .

This has to stop - only you can help. We aren't going to get it from the
CDC or the NIH or anybody else until we convince our government
representatives of the seriousness of our illness and let them know we
are not going to stop until they do something to "really" help us.

Nancy Henson
aka GrannyCFS

* * *

Most of the doctors I've seen over the past 21 years have had "simple solutions" for me.  They take the easy way out, and when it doesn't work, they blame me.  Not the fact that I have a disease, but me personally -- I'm either lazy, crazy, or lying about compliance.

The solution that I was originally offered for my chronic digestive problems was "don't eat what makes you sick".  The problem is, I've thrown up everything, including plain water, so I guess there's absolutely nothing safe for me to eat.  I was told to report in after two weeks of following the IBS diet; I handed the paper with the diet on it back to the nurse and said I hadn't eaten any of the stuff on there in a lot more than 2 weeks.  In fact, I was introduced to the IBS diet in the late 1980s.  She refused to believe that I had not eaten anything greasy, spicy, or acidic in two weeks, couldn't remember the last time I'd had pizza or fast food.

In fact, the problem is not what goes into my stomach, but what goes on around it.  For example, the vagus nerve can stimulate vomiting.

The simple solution to my sleep problems has almost always been to go to bed at the same time every night, get up at the same time every morning, and don't take naps during the day.  In other words, exactly what I did for years while I was working, including the last few months where I was falling asleep between 5-6 AM and continuing to get up at 7-7:30 AM in order to get to work on time.  The cause of the insomnia was not staying up till dawn; still being awake at 5 AM was the result, not the cause.

Oh, but you haven't worked in a while, so you need to get back on a schedule and train yourself to sleep at night.  During the clinical trial, I had to take the sleeping pill at the same time (11 PM) and get up at the same time (7 AM) every day for a full year, and not take naps.  And after a year of sleeping at night, every night, was my system "retrained" to a more normal schedule?  No. 

The first night without the sleeping pills, I didn't sleep at all.  In a matter of days, I was back on the schedule I'd had before the sleeping pills: falling asleep at 5 AM, no matter what time I went to bed.  It has nothing to do with when I go to bed, and everything to do with when my cortisollevels naturally reach the level that induces sleep.

I finally got someone to listen to me, that the problem isn't stress or partying or excess noise ... the problem is intense chronic pain that makes it impossible for me to get comfortable enough to sleep, and when, at 5 AM, I finally did fall asleep from exhaustion, the pain would soon become bad enough to wake me up.  When the root of the problem was addressed, a pain pill prescribed to be taken at bedtime, I was more likely to fall asleep than to spend 6 or 8 hours tossing and turning trying to find a comfortable position.

It was a solution that required listening to the patient instead of jumping to the simple solution, and then accusing the patient when the simple solution didn't work. 

Raise Research Funds with your Searches

Please repost far and wide!

Everyclick is a search engine (ie like google) that gives 50% of its profits
to charities according to the number of clicks the charity supporters make,
have updated their website and the ME Research UK share of their profits has
now reached over £2900!!  Don't forget to keep clicking and lets get to
£3000 asap!

***** N.B. You can also donate online to ME Research uk via the Everyclick
site and 100% goes to ME Research UK as they do not take a percentage of the
donation like some fundraising websites

So, if you haven’t joined already, please go to

www.everyclick.com/uk/meresearchuk

become a supporter, make it your home page and do some clicks each day, and
spread the word among all your friends and relations!

ME Research is not a popular cause in the eyes of the general public, so if
we and our friends and families don't do our best to raise funds, certainly
no-one else will!   I used to feel guilty asking friends to support ME
research as it felt like asking for something for myself, until I realised
this and thought how many other ME sufferers there are, many only
youngsters!

When you think of the number of ME sufferers and the number of contacts
everyone has there is tremendous potential to raise a lot more!

I have made it my signature (below) as some friends said they needed a
reminder to keep using it! I make Everyclick my first port of call for
searches and also click daily to see all the various news headlines.

Von x
Please don't forget to search the net via

http://www.everyclick.com/uk/meresearchuk/

and raise money for ME biomedical research just by clicking

Fibro info from EULAR Congress in Paris

On June 11-14, 2008 the Annual European Congress of Rheumathology was held
in Paris, France.

The URL is,
   http://www.eular.org
   http://www.eular.org/index.cfm?framePage=/congress_2008.cfm
The URL of the abstracts of the FM session is,
   http://www.abstracts2view.com/eular/sessionindex.php?session=200862&day=2008
Here you will also find a CFS paper by Kerr et al.,
   http://www.abstracts2view.com/eular/view.php?nu=EULAR08L_THU0361

A report (in German) can be found at,
   http://www.zvk.org/s/content.php?area=109&sub=190&det=191&news_id=5148

Letters to the Editors from Dr. John & Co.

PERMISSION TO FORWARD, REPOST & USE IN NEWSLETTERS.
Please urge your listowner to post everything even - perhaps especially
- things they personally do not agree with for fair balance.
If any of my postings is being censored, or selectively edited out, by a
listowner, you may wish to join my M.E. Chums list to get the whole unbiased
picture.

------------------------------

Letter in response to an article in The Times, 23 July 2008, which asks
Who'll be first to offer disabled people a job?
Journalist Alice Miles finds that the employers she checked didn't have a
very good record.
She didn't check government departments ...
Letter here http://www.mefreeforall.org/2008-Jul-Sep.1017.0.html#c3795
with clickable underlined heading to original article, when you are logged
in.

Cheers
John
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All. org
---

Response to an article in the Glasgow Herald
by patient, Susie Maguire, who tells of how long it
took to get a positive diagnosis of migraine, after being "shunted" around
the health service and given different possible diagnoses, including M.E.

Letter here http://www.mefreeforall.org/2008-Jul-Sep.1017.0.html#c3800
with clickable link on the underlined heading to the original article.
You may leave a comment here, beneath the article, if you register with them
and log in.

If you want to write to the paper (perhaps as well as leaving your comment),
the e-mail address is letters@theherald.co.uk

---

Thanks to Jill Pigott for letting us know about this story in the Worcester
News, "Tiredness that turned me into a total zombie" (30 July 2008).

My letter here

http://www.mefreeforall.org/2008-Jul-Sep.1017.0.html#c3807

suggests that whoever called M.E. "tiredness" has never experienced the difference between the two.

(There is a clickable link, on the underlined title but when I tried,
earlier, it was painfully slow
loading, the article seems poorly framed and it timed me out for logging in
-- Other than that, it's perfect!)

If you want to reply to the letters page, the e-mail address is
letters@worcesternews.co.uk

* * *

These address three of the big problems of CFS patients: we want to work but no one wants to hire us, the medical profession shunts us around, and people have the notion that the only symptom of CFS is "tiredness" and refuse to believe that there are neurologic symptoms as well.  In fact, the symptoms of CFS are so similar to the symptoms of MS that the two are often misdiagnosed for each other.

"Who'll be the first to offer the disabled a job?"  The answer to that is always "the competition".  Every employer agrees in theory that disabled people should be put to work instead of being supported by the taxpayers, but when it comes down to it, no one wants to hire you themselves.  They think every other business should do it, and especially their competition.  But when it comes to their own business, they have plenty of excuses, starting with "it will drive my medical insurance premiums way up".

Government subsidies?  Well, if you can guarantee they won't be abused.  There was a program for the mentally handicapped which paid a portion of the employee's salary for the first few months, in order to prove to employers that the handicapped could be good employees.  At first, the program was going gangbusters, because who wouldn't want an employee for half-price?  But then someone noticed that at the point the employee's salary would have been entirely the employer's responsibility, that employee was fired and a new one was hired, again with the government picking up a portion of the salary.  It became frustrating for the employees, who were repeatedly fired after a few months and had to look for a new job, not really able to explain in interviews why they were fired because they hadn't done anything wrong, and annoying for the government, to realize they'd created a program with so much potential for abuse -- no safeguards prevented this scam, the employers weren't required to keep the employees on the payroll after the subsidy ran out.  But, if the employee really wasn't worth the salary, there had to be a way to let him go without losing the subsidy for the wages already paid, so they couldn't figure out how to fix the problem.

 

Wednesday, August 20, 2008

Hospital Death Rates Revealed

http://www.cnn.com/2008/HEALTH/08/20/hospital.deaths/index.html?iref=mpstoryview

(Excerpts)

For the first time, death rates during the past two years from pneumonia are included with death rates from heart attack and heart failure for individual hospitals across the country. These numbers can be compared with the national mortality rate for heart attack (16.1 percent), heart failure (11.1 percent) and pneumonia (11.4 percent).

In the past, the information specified only whether a hospital was performing at, above or below the national average, without disclosing numbers.

Hospital Compare http://www.hospitalcompare.hhs.gov/Hospital/Search/Welcome.asp?version=default&browser=IE%7C6%7CWinXP&language=English&defaultstatus=0&pagelist=Home  is run by the Centers for Medicare and Medicaid Services, an agency of the U.S. Department of Health and Human Services. In addition to the pneumonia mortality rates, the Web site recently added statistics on the quality of hospital care received by children. The new data join information on process of care, patient satisfaction and patient experience.

[Harlan Krumholz, cardiologist and professor at Yale] "I do hope that it empowers groups of patients and community groups and hospital boards to engage in a conversation with their institution. They really need to be held accountable," he said. "This is a tool that can improve the conversation."

* * *

My friend Eleanor died of a hospital-acquired infection in a hospital which had an extremely high rate of such infections.  According to the experts, if not for that infection, she would have recovered from the illness that sent her to the hospital; there was no question in their minds that the hospital, not the original illness, was entirely responsible for her death.

That was almost 25 years before the hospital was finally closed as being hazardous to patients' health.

As Dr. Krumholz says, "They really need to be held accountable."  And a lot faster than decades later.

That 11-16% of patients who died are all someone's friend or loved one.  Doctors cannot lose sight of that fact.  We may be a virtual stranger to the doctor, but someone's life will be permanently changed by losing someone close to them, or even if that someone close to them survives but is left with a disability that affects the rest of their life.  Every patient deserves the best medical care available, not just the ones the doctor has a long-term relationship with, or the ones who share the doctor's gender or ethnic group, or the ones the doctor thinks are rich or otherwise deserving of extra effort on his part.

It does not escape my notice that I got better treatment by members of a certain medical group when I was employed/insured than I did after I became unable to work and they assumed I was uninsured or on Medi-Cal.  In fact, there were more restrictions on my care when I was insured, because that HMO capitated payment, whereas when I went back after I stopped working, I had a different insurance policy, where the more treatment/tests they ordered, the more they would have been paid.  I sincerely believe that if the doctors had been aware that I still had good insurance, I wasn't on Medi-Cal, they would have treated me better, but like everything else, they assumed they knew everything about me and didn't have to ask.

Tuesday, August 19, 2008

Memory for Fatigue proven accurate

International Journal of Behavioral Medicine Vol. 15, #1, pp. 29-33 January 2008 http://www.informaworld.com/smpp/title~content=t775653652~db=all

Memory for fatigue in Chronic Fatigue Syndrome: the relation between weekly recall and momentary ratings

Fred Friedberg and Stephanie J. Sohl - Department of Psychiatry and Behavioral Science, Stony Brook University, Stony Brook, NY. * Correspondence concerning this article should be addressed to Fred Friedberg, Ph.D., Department of Psychiatry and Behavioral Science, Putnam Hall/South Campus, Stony Brook University, Stony Brook, NY 11794-8790, USA. E-mail: fred.friedberg@stonybrook.edu

Patients with chronic fatigue syndrome (CFS), a disabling illness of unknown etiology (Fukuda et al., 1994) report persistent severe fatigue, although their daily fatigue patterns may show considerable variation (Stone et al., 1994; Wood, Magnello, & Sharpe, 1992). Thus, complaints of "always" being extremely fatigued may indicate recall of higher or more enduring fatigue than was actually experienced (Wood et al.,1992). Furthermore, the cognitive theory of CFS (Surawy, Hackman, Hawton, & Sharpe, 1995) argues that the patient's (erroneous) suspicion of disease heightens symptom perception and distress which amplifies symptoms and reinforces the belief that the sufferer is sick.

Given the above considerations, it would be important for both health practitioners and clinical researchers who evaluate CFS to know if their patients' recall of fatigue is discrepant with their daily symptom experiences. An initial study on memory for fatigue in COPD patients (Meek, Lareau, & Anderson, 2001) over a 14-day period found very high levels of agreement between recall and real-time daily fatigue intensity ratings, with no significant differences between the two types of measurement. However, this study used paper diaries returned at the end of the data collection period.

Paper diaries have shown sharply lower compliance with scheduled data entry times in comparison to electronic dairies (Stone & Shiffman, 2002). For instance, diary entries for a one-week data collection period may be done on the last day of data collection as opposed to their scheduled daily times. Such non-compliance may cast doubt on the validity of memory studies using paper diaries without confirmation procedures.

To address the issue of confirmation of symptom ratings in vivo, a recent memory study of patients with chronic pain (Stone, Broderick, Shiffman, & Schwartz, 2004) recorded multiple daily pain ratings in time-stamped electronic diaries followed by weekly recall of pain over a two-week period. These authors found that weekly recall of pain intensity was significantly higher than momentary ratings, although recall agreement between weekly and momentary ratings was moderate to high.

Current Study

The goal of this study was to assess memory for symptoms in participants with CFS. We hypothesized that between-person associations between momentary ratings and weekly recall of fatigue would be moderate to high. These findings may have implications for the conduct of office examinations for CFS.

Methods

Participants

The participants were 71 adults with CFS, recruited primarily from non-clinical sources as part of a larger naturalistic study using radio, TV, newspaper and newsletter advertising, CFS and fibromyalgia websites, physician referrals, and hospital announcements. There were no demographic differences among these sources of recruitment. Candidates were offered $100 compensation for participation. All participants signed consent forms approved by the Stony Brook University institutional review board.

Participants were diagnosed with CFS by the study physician or physician's assistant as supervised by the project physician. The diagnosis was based on the established criteria for CFS (Fukuda et al., 1994; Reeves et al., 2003) which included six months of medically unexplained, debilitating fatigue plus four out of eight secondary symptoms. In addition, the definitional criteria for CFS excluded patients who had identifiable medical and psychiatric conditions that might plausibly explain their fatigue symptoms. Psychiatric exclusions were based on the results of the Structured Clinical Interview for DSM-IV (First, Spitzer, Gibbon, & Williams, 2001) conducted by Friedberg or his graduate student (D.W. Leung).

Additional inclusion criteria were age requirements (18-60 years), English fluency, and wakefulness between 9 AM and 9 PM daily. Eight-hundred and forty-one telephone-screening interviews (conducted by Friedberg) yielded 231 candidates (27.4%) eligible for the study. Of these eligible patients, 126 (54.5%) agreed to participate. Participant withdrawal was largely due tothe time commitment involved in the larger study.

A final CFS diagnosis was confirmed in 123 (95.5%) of these participants, of which data for this study was available for 71 subjects. There were no demographic differences between the larger participant pool and the subset who participated in this study. The average age of the participants was 42.0 years (SD=8.6) and 85.3% were women. Participants were predominantly white (92.8%), highly educated (73.9% attending at least some college), and married or cohabitating (57.9%). The mean duration of the CFS illness was 8.03 years (SD=6.8; range: 0.75-37 years).

Measures and Materials

Momentary Measure: Electronic Diary. The electronic diary was a palm pilot computer (Model: Palm Vx, Palm Inc., Sunnyvale, CA 94085) with software (Satellite Forms, Palm Inc., Sunnyvale, CA 94085) specifically designed to record momentary data. The system has been successfully used in many other studies (e.g., Aaron, Turner, Mancl, Brister, & Sawchuk, 2005; Stone et al., 1994). The palm pilot emitted auditory prompts that were linked to a display of symptom rating scales. A participant-operated stylus was utilized to select a response to each numerical symptom scale. The software recorded the time and date of each entry. To avoid interruptions of important ongoing activities (e.g., business meetings), participants were allowed to enter data in between scheduled prompt times.

In order to obtain a representative diurnal sample of symptoms without undue subject burden (Stone & Shiffman, 2002), the palm pilots prompted subjects for 21 days, 6 times a day, every 2 hr plus or minus a randomly programmed 1 ­20 min interval (Stone & Shiffman, 1994). The first daily prompt occurred within 1 hr of the subject's wakening and the last daily prompt approximately 12 hr later. No prompt signals occurred during the subject's reported sleep time. After each prompt, a screen was displayed with a numerical rating scale (0 ­10) that was labeled "Fatigue Now." The end point anchors on the numerical scales were None (0) and Highest (10). Subjects were instructed to record intensity ratings on the numerical scale for their current levels of fatigue.

Recall Assessment of Symptoms and Affect. At the end of each week of momentary assessment, recall ratings of fatigue for that week were obtained from subjects via telephone. The format of the question asked was: "What was your average fatigue over the past7 days from 0 to 10, with 0 indicating 'none' and 10 indicating the 'highest'?"

Procedure Participants were trained individually on how to use the palm pilot and how to answer the electronic diary questions. Subsequently, the 3 weeks of momentary and recall data collection were completed.

Statistics Correspondence between Weekly and Momentary Reports of Fatigue. The statistical analyses used to compare recalled and momentary fatigue measures were based on a previous study on the recall of pain (Stone et al., 2004). T-tests were used to assess differences between momentary and recall fatigue ratings. In addition, consistency between weekly recall and average momentary reports of fatigue was measured with a Pearson correlation and two types of intraclass correlations: the ICC (C,1) and ICC (A,1). The Pearson correlation measures rank ordering but does not assess any differences in variability or level of absolute agreement between the two compared measures. The ICC (C,1) intraclass correlation addresses both consistency in ranking as well as adjusting for variability in the measures. The ICC (A,1) evaluates level of absolute agreement between the measures (Stone et al., 2004).

Results

Three weeks of momentary and weekly recall data were available for analysis. Participant compliance with the palm pilot prompts was excellent: The average compliance rate for the full sample over the three week data collection period was 92% (week 1: 94%; week 2: 92%; week 3: 91%). Three-week average compliance rates for individual participants ranged from 71-100%. Only three subjects had compliance rates below 80%. The means and standard deviations for average momentary and recalled fatigue and pain are presented in Table 1.

Average three-week ratings for recall of fatigue were about 0.4 of a point higher (8.5%) than average momentary fatigue scores on an 11-point scale (0-10). Large absolute differences between recall and momentary and recall ratings were uncommon. Over the three weeks of data collection, only 7.0% of participants recalled fatigue ratings, on average, that were either 2 points or more higher or lower than their momentary ratings.

The overall differences in recall versus momentary ratings of fatigue were significant for all three weeks (week 1: t(62)=-3.77, p<0.001; week 2: t(64)=-2.02, p<0.05; week 3: t(61)=-3.02, p<0.01). The corresponding effect sizes (d; Cohen, 1988) were small:0.38 (week 1), 0.21 (week 2), and 0.25 (week 3).

Consistency and Agreement

The Pearson correlations (Table 2) between recall and momentary ratings, the first measure of consistency for fatigue, were significant for all three weeks. This indicates that participants who rated momentary fatigue higher also recalled higher levels of fatigue. The ICC (C,1) analysis also revealed significant associations, reflecting the fact that the variances of the two fatigue measures were similar. The absolute agreement ICCs (A,1) were somewhat lower, indicating that participants recall ratings shared about 50% of the variance with their absolute levels of momentary fatigue.

Discussion

This study examined the degree of consistency and agreement between weekly recall and average momentary ratings of fatigue as reported over a three-week period in patients with CFS. Our hypothesis was confirmed: correlations between real-time momentary reports and weekly recall of fatigue intensity were moderate to high.

Consistency and Agreement

Overall, these findings for fatigue symptoms were similar to the results of memory studies in chronic pain. The Pearson and consistency correlations between weekly recall and momentary reports of fatigue were slightly higher than the recall agreement correlations, consistent with previous research on chronic pain (Bolton, 1999; Stone et al., 2004). In the current study, the fatigue recall ratings were significantly higher than momentary ratings for all three weeks of data collection, although the average effect size was small.

One possible explanation for the discrepancy between recall and momentary ratings is sampling error. Because momentary ratings were based on a limited number of samples from each day, unrecorded ratings that the participant would have accurately recalled may have been missed. However, previous studies using experience sampling methodologies have found higher pain levels (Stone et al., 2004), more intense emotions (e.g., Parkinson, Briner, Reynolds, & Totterdell, 1995; Thomas & Diener, 1990) and more severe marital disagreements (e.g., McGonagle, Kessler, & Schilling, 1992) in retrospective as compared to concurrent reports. If different subjective criteria, particularly salience, are involved in retrospective versus real-time reports, then higher symptom ratings may be associated with longer recall periods.

Clinical Applications

Understanding how patients with CFS recall their fatigue is important because symptom severity is an essential clinical dimension of this poorly understood illness, which lacks biological indictors for diagnosis. Our findings that CFS patients' recall of fatigue was in moderate to high agreement with the fatigue they actually experienced in their home environments can provide at least some level of validation to clinicians of the reality of their patients' symptom complaints. Unlike the assertion of Wood et al. (1992) that CFS patients "always" report being extremely fatigued, the data in this study revealed that patients' fatigue levels, for both momentary and recall experience, averaged out at moderate intensity levels.

The symptom amplification model of functional somatic syndromes (Barsky & Borus, 1999; Shorter, 1992) which has found application in a cognitive model of CFS (Surawy et al., 1995) may have been modestly confirmed in this study because symptom recall was significantly higher than momentary symptom intensity. Yet it seems implausible that the relatively minor overestimation of symptom intensity, given the small effect sizes, would account for the disabling symptoms of CFS.

Alternatively, symptom amplification, if present, may operate more prominently on either the momentary symptom experience itself or the more general trait-like perception of personal fatigue, rather than on weekly symptom recall. Catastrophizing has been associated with in vivo average daily pain intensity in a study of chronic pain patients (LeFebvre & Keefe, 2002). Furthermore, trait-like fatigue and impairment have been found to be related to catastrophizing in CFS patients (Petrie, Moss-Morris, & Weinman, 1995) and may be one mechanism of symptom amplification (Barsky & Borus, 1999).

This study is limited by the absence of a control condition of healthy or fatigued subjects (without CFS) that would help to ascertain if the recall discrepancy findings were specific to CFS. Given the above findings in chronic pain, it may be that people with symptoms generally amplify their retrospective recall of their symptoms. In addition, this study was conducted on a largely non-clinical sample with a low percentage of minority subjects in comparison to the much higher percentages of minorities found in a population study in CFS (Jason et al., 1999).

For future research, the relationship of the theoretical construct of symptom amplification as it pertains to CFS could be explored with respect to momentary and recalled symptoms using measures of catastrophizing and negative affect. Future studies might also manipulate recall in a controlled experimental setting, for instance, by exploring different periods of time for recall to see how this influences the level of recall agreement.

References

Aaron, L.A., Turner, J.A., Mancl, L., Brister, H., & Sawchuk, C.N. (2005). Electronic diary assessment of pain-related variables: Is reactivity a problem? Journal of Pain, 6, 107-115.

Barsky, A.J., & Borus, J.F. (1999). Functional somatic syndromes. Annals of Internal Medicine, 130, 910-921.

Bolton, J.E. (1999). Accuracy of recall of usually pain intensity in back pain patients. Pain, 83, 533-539.

Cohen, J. (1988). Statistical power for the behavioral sciences. 2nd ed. Hillsdale, NJ: Lawrence Erlbaum.

First, M.B., Spitzer, R.L., Gibbon, M., & Williams, J.B. W. (2001). Structured clinical interview for DSM-IV Axis I disorders (SCID-I). New York: New York State Psychiatric Institute.

Fukuda, K., Straus, S.E., Hickie, I., Sharpe, M.C., Dobbins, J.G., & Komaroff, A. (1994). The chronic fatigue syndrome: A comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group. Annals of Internal Medicine, 121, 953-959.

Jason, L.A., Richman, J.A., Rademaker, A.W., Jordan, K.M., Plioplys, A.V., & Taylor, R.R., et al. (1999). A community- based study of chronic fatigue syndrome. Archives of Internal Medicine, 159, 2129-2137.

Lefebvre, J.C., & Keefe, F.J. (2002). Memory for pain: The relationship of pain catastrophizing to the recall of daily rheumatoid arthritis pain. Clinical Journal of Pain, 18, 56-63.

McGonagle, K.A., Kessler, R.C., & Schilling, E.A. (1992). The frequency and determinants of marital disagreements in a community sample. Journal of Social and Personal Relationships, 9, 507-524.

Meek, P.M., Lareau, S.C., & Anderson, D. (2001). Memory for symptoms in COPD patients: How accurate are their reports? European Respiratory Journal, 18, 474-481.

Parkinson, B., Briner, R.B., Reynolds, S., & Totterdell, P. (1995). Time frames for mood: Relations between momentary and generalized ratings of affect. Personality and Social Psychology Bulletin, 21, 331-339.

Petrie, K., Moss-Morris, R., & Weinman, J. (1995). The impact of catastrophic beliefs on functioning in chronic fatigue syndrome. Journal of Psychosomatic Research, 39, 31-37.

Reeves, W.C., Lloyd, A., Vernon, S.D., Klimas, N., Jason, L.A., Bleijenberg, G., et al. (2003). International Chronic Fatigue Syndrome Study Group. Identification of ambiguities in the 1994 chronic fatigue syndrome research case definition and recommendations for resolution. BMC Health Services Research, 3, 25-35.

Shorter, E. (1992). From paralysis to fatigue: A history of psychosomatic illness in the modern era. New York: Free Press.

Stone, A.A., Broderick, J.E., Porter, L.S., Krupp, L., Gnys, M., Paty, J.A., et al. (1994). Fatigue and mood in chronic fatigue syndrome patients: Results of a momentary assessment protocol examining fatigue and mood levels and diurnal patterns. Annals of Behavioral Medicine, 16, 228-234.

Stone, A.A., Broderick, J., Shiffman, S., & Schwartz, J. (2004). Understanding recall of weekly pain from a momentary assessment perspective. Absolute accuracy, between- and within- person consistency, and judged change in weekly pain. Pain, 107, 61-69.

Stone, A., & Shiffman, S. (1994). Ecological momentary assessment (EMA) in behavioral medicine. Annals of Behavioral Medicine, 16, 199-202.

Stone, A.A., & Shiffman S. (2002). Capturing momentary, self-report data: A proposal for reporting guidelines. Annals of Behavioral Medicine, 24, 236-243.

Surawy, C., Hackman, A., Hawton, K., & Sharpe, M. (1995). Chronic fatigue syndrome: A cognitive approach. Behavior Research and Therapy, 33, 534-544.

Thomas, D.L., & Diener, E. (1990). Memory accuracy in the recall of emotions. Journal of Personality and Social Psychology, 59, 291-297.

Wood, C., Magnello, M.E., & Sharpe, M.C. (1992). Fluctuations in perceived energy and mood among patients with chronic fatigue syndrome. Journal of the Royal Society of Medicine, 85, 195-198.

(c) 2008 Taylor & Francis Group, LLC

Another Patient Dies Unattended in an ER

http://www.sacbee.com/101/story/1167483.html

Roland Banaga, 51, of Richmond, had come into the emergency room around noon Friday, two hours before he collapsed there

"If you're in an emergency room, you're there to be treated. You can't just sit and be neglected."

* * *

One of our local ERs regularly has waits of 12 hours -- 24 hours on weekends when there are more DUIs and bar fight stabbings. 

When I called wanting someone to just look at something extremely painful that might have been nothing or might have been a major problem about to happen, my doctor's office gave me the usual "we're setting appointments 6-10 weeks from now, or go to the ER if you can't wait that long."  So I called the ER and was told "bring a book".  No, the triage nurse would not take 2 seconds to look at it and tell me "looks fine, go home" ... I was going to have to wait 12-24 hours before anyone would spare me that 2 seconds to tell me if I'd wasted my time sitting there. 

And, since my insurance thought this was something that could be dealt with in a doctor's office, they wouldn't authorize an ER visit, so I was going to have to pay $1000 out of my own pocket for the privilege of being ignored for a full day! 

Thankfully, my boss's wife was a nurse.  I called their house, and she just asked me a few questions to save me the trip over to show it to her -- I could describe what I was seeing, and she could easily describe what she was looking for.  At that moment, it was nothing to worry about, just ice and aspirin for the pain unless/until I saw the symptom she'd described; I would've been really peeved to spend 24 hours and $1000 for that information.  (Not to mention, ERs are hotbeds of airborne germs -- not a good place for those of us with fragile immune systems! -- and I would have been extra peeved if sitting there for 24 hours resulted in picking up a bug that cost me additional time off work.)

Someone I know online had a similar problem with the same ER.  She was vomiting frequently (eventually diagnosed as food poisoning) and was told to take a seat.  After waiting five hours -- FIVE HOURS! -- and throwing up the whole time, she was too weak to walk to the ladies room again, and threw up on the floor.  The nurse didn't offer her an emesis basin, or a glass of water, just cussed her out for making a mess on the floor so the nurse had to call someone to mop it up.  Telling the nurse that she was now too weak to stand didn't get her moved up the priority list, she was brusquely informed that the estimated waiting time from check-in to seeing a doctor was still the 12 hours she'd been told when she first came in.

At that point, her companion picked her up, carried her out, drove her to a different ER, and as soon as he said she was too weak to walk, they hustled her in ahead of the patients who'd been waiting.  She was so dehydrated that if they'd waited any longer, she definitely would have been hospitalized and might have died.  But she simply was not a priority at the other ER, even when she reached the danger stage.  If you thought doctors and nurses will bend over backward to care for patients, there's your proof that empathy and preventing further deterioration are not always a high priority.

If it were a one-time thing, a long delay because they were overloaded from a 50-passenger bus accident, there would be nothing to complain about.  But this was a chronic understaffing problem, 24/7, 365 days a year, made worse by the insistence of every doctor at that medical center that anything that couldn't wait 6-10 weeks for a regular appointment should be seen in the ER (including the request that the doctor call in a different prescription due to extreme side effects from the one he just gave you a few hours before).  After all, why should they take $50 for seeing a nurse practitioner when they could get $1000+ for sending you to the ER?  And why should they take $1000 for seeing you in the ER if they can ignore you long enough to get $10,000 for hospitalizing you? 

One of the best-kept secrets is that the medical center actually does have an Urgent Care where you could be seen a lot cheaper than the ER; but neither the phone line nor the ER tells you about it unless you specifically ask, and there are no signs along the drive pointing you toward it (it's halfway across the campus from the ER, and well-hidden to make sure you don't find it by accident) -- again, why should they run you through the Urgent Care for $100 if they can make $1000 by leaving you in the ER, or $10,000 if they ignore you long enough to require hospitalization?

Fortunately, one of the bosses had to deal with the same thing, waiting 24 hours for a worryingly sick child to be seen, and that experience convinced him to change our insurance so that we would not be required to use that ER.  The new medical group had an Urgent Care Center where you never waited more than an hour, and the new insurance had an Ask-a-Nurse telephone line that would, like my boss's wife, ask questions on the phone that might save you a trip to Urgent Care if the most worrisome symptoms were absent.

My new doctor is even better.  He reserves about a quarter of his appointments for emergencies; I can always be seen the same day or the next day, in his office.  Instead of having to explain my complex medical history to an ER nurse, I'm treated by someone who already knows what we have to be extra-careful about.  If I'm not sure if I need to actually see him, he'll personally return my call and ask the triage questions to determine if it's something serious or most likely nothing to worry about.

Hospitals need to be held accountable for patients who die in the ER, or whose condition gets worse while they are kept waiting for hours.  There's already a move afoot in several countries that insurance will not pay for treating hospital-acquired infections -- the hospital whose shoddy sanitation caused the problem has to pay the price for their failings; perhaps they should add that insurance also will not pay for hospitalization resulting from conditions that could have been headed off at the pass with prompt treatment.  If, like the gal from my online group, the patient gets tired of waiting and goes to a different ER, and is then hospitalized there because the delay caused her to get worse, the hospital bill should be sent to the ER that ignored her for hours on end.  Eventually, enough of these bills for extra treatment required due to excessive waits may convince them that it's more cost-effective to fully staff the ER than to let patients wait, untreated, until the situation becomes dire or even fatal.

God vs. Doctors

http://www.cnn.com/2008/HEALTH/08/18/god.vs.doctors.ap/index.html

"When it comes to saving lives, God trumps doctors for many Americans."

<snip>

"Sensitivity to this belief will promote development of a trusting relationship" with patients and their families, according to researchers.

<snip>

"Claudia McCormick, a nurse and trauma program director at Duke University Hospital, said she also has never seen that kind of miracle. But her niece's recovery after being hit by a boat while inner_tubing earlier this year came close. Doctors at the hospital where she was airlifted said "it really doesn't look good." And while it never reached the point where withdrawing lifesaving equipment was discussed, McCormick recalled one of her doctors saying later: 'God has plans for this child. I never thought she'd be here.’"

 

* * *

Many CFS patients consider themselves to be alive despite their doctors. I’m one of them: looking at a prescription I’d received from another medical group, a doctor I trust asked "are they trying to kill you?" and ordered me not to take those pills. His assessment of the situation was that they knew I had a good malpractice case against them, and because I’m single with no dependents, if they killed me the lawsuit would die with me.

On the other hand, I had prayer groups all over the world asking God to do what the doctors weren’t. Denomination wasn’t an issue – I had Catholic nuns in a midwest convent chapel, the priest at a local Buddhist temple, and when I found myself boxed into a corner at a craft fair by a gathering of clergy of the various Eastern Rite churches participating, I spoke up and got myself blessed by the Greek Orthodox, the Russian Orthodox, the Coptics... half a dozen priests at once.

Things turned around for me when my best friend in the universe passed away suddenly. I sincerely believe that when Kat got to heaven, she screwed up her courage, tugged on the Lord’s sleeve and said "my best friend needs a miracle, please." One week later, I found an open-minded doctor who acknowledged that CFS is a physical ailment, and reassured me that he wasn’t going to try to sell me any snake oil. A couple weeks after that, I found a clinical trial that would get me the sleeping pills I’d been begging for for years. As opposed to the ones my new doctor had prescribed, which worked only 1 night in 3, the experimental ones put me to sleep all but one night. In the year of the clinical trial, my immune system regenerated, it launched a full-scale assault on the virus (6 months of 101 fever), and when the clinical trial ended, I felt better than I had in years. And not only were these miracle pills given to me at no charge, I was actually paid to take them! There was a monthly stipend for my time and travel.

The next year, I was given the opportunity to talk to a local pain management specialist and a nationally-known CFS expert at no charge to get their advice on what my doctor should be doing to help, and what I could do to help myself. www.DrRodger.com  Then I was told I could try a Sleep Number bed "free" for 30 nights, which was also a big help in moving me toward better health.

Like Nurse McCormick’s niece, it’s obvious that I’m still here for a reason. Half a dozen times in my life, there were opportunities for me to be dead, or at least in a wheelchair, and I’m still standing. I may walk slowly, but it is on my own two feet, no wheelchair, not even a cane. (Again, despite the doctors who say it should be impossible for me to walk at all.)

At the point that I began to suspect the reason I’m still here and walking was to speak out on behalf of CFS patients, things fell into place too neatly for it to be anything but the hand of God. At the very first Awareness Day event I attended, I met someone who has been a great resource for both providing research materials and contacts with experts, and who introduced me to even more great resource people. At the first purely political event, I met several elected officials who knew first-hand about the effects of CFS and agreed to address their respective legislative bodies about our concerns.

Doctors may think they’re God, but I know where my healing actually came from. Despite the doctors’ best efforts to kill me, I’m still here, and making sure that other CFS patients don’t suffer the same mistreatment/maltreatment/nontreatment that I did. There’s a contingent that would like me to shut up and go away, but I’m doing God’s work now, and I answer to a higher authority than doctors. God wants me here for a reason, and I’m not going to disappoint Him by backing down.

Monday, August 18, 2008

Program: Diagnosing and Treating CFS/ME - October 2008

 
Chronic Fatigue Syndrome / Myalgic Encephalomyelitis Program
for Family Physicians, General Internists, Rheumatologists, and Psychiatrists

Part I: Diagnosis and Assessment of Patients with CFS/ME
Friday, October 24th, 2008 - 1:00 - 4:45 pm - Dr. Clara Christie Theatre

After attending, participants will be able to:
• Use the Canadian Consensus Guidelines and check lists to accurately diagnose patients presenting with the signs
& symptoms of CFS/ME

• Use the Guidelines’ history, physical examination and laboratory tests to exclude other diseases that can cause
chronic fatigue, sleep disorders, pain and cognitive difficulties

• Assess occupational disability in CFS/ME

• Differentiate CFS/ME from psychiatric disorders

Dr. Pierre Flor Henry MB, ChB, MD(Edin), AcadDPM(Lond), FRCPsych, CSPQ(Psych)
Clinical Professor and Director, Clinical Diagnostics and Research Centre, Department of Psychiatry, University of Alberta,
Co-Author: Canadian Consensus Guidelines for the Diagnosis and Treatment of ME/CFS

Dr. Eleanor Stein MD FRCP(C)
Psychiatrist with dedicated CFS practice, Calgary, Alberta

Dr. Irena Esche MD FRCP(C)
Psychiatrist in private practice, Calgary, Alberta


Part II: Clinical Management of CFS/ME
Friday, November 7th, 2008 - 1:00 - 4:45 pm - Libin Lecture Theatre

Through case examples and discussion, participants will learn:
• The treatment approach to CFS/ME

• Management of sleep, activities, pacing, pain and diet
• To take an environmental history to evaluate the impact of environmental/dietary influences on health

• To teach the basics of stress management learning the tools of meditation and breathing regulation

• To assist patients with the emotional effects of chronic illness: CFS/ME

Dr. Alison Bested MD FRCP(C) (Hematological Pathology), Toronto, Ontario
Author: Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia,
Co-Author: Canadian Consensus Guidelines for the Diagnosis and Treatment of ME/CFS

Dr. Eleanor Stein MD FRCP(C)
Psychiatrist with dedicated CFS practice, Calgary, Alberta

Dr. Ernie McCrank MD FRCP(C)
Psychiatrist in private practice, Calgary, Alberta

For registration form, please go to www.cme.ucalgary.ca

Sunday, August 17, 2008

Lost in a System where Doctors Don't Want to Listen

Source: Washington Post
Date:   August 3, 2008
Author: Benjamin H. Natelson
URL:
http://www.washingtonpost.com/wp-dyn/content/article/2008/08/01/AR2008080102953.html
Ref:    http://www.painandfatigue.com


Lost in a system where doctors don't want to listen
---------------------------------------------------

I'd like to tell you about one of my patients. She's the kind of patient that
I enjoy seeing but that many doctors go out of their way to avoid. This means
that she's also the kind of patient I worry about most - a patient who in
the near future may be stranded without proper care as fewer and fewer
doctors, constrained by time and the economics of our health care system, are
willing to perform the fundamental task of diagnosing difficult or unclear
medical problems.

My patient is a 37-year-old woman, a mother of two teenagers, with a busy
career. She was in perfect health until July 2007, when, overnight, she came
down with what her doctor said was a case of flu. This 'flu,' however,
wouldn't go away. Her doctor assured her that she'd get better, but three
months after her first visit to him, she was back in his office, still
feeling ill. The doctor did a thorough medical evaluation, told her that he
couldn't find anything wrong and again assured her that she'd eventually
recover. A few months later, she was back again. This time, as she described
it to me, the doctor sort of shrugged his shoulders and told her that maybe
her problem was all in her head.

As you might imagine, the patient was put off by her doctor's dismissal,
which set her off on a gyre of doctor-shopping. Over the next six months, she
saw eight physicians, as well as a chiropractor and a homeopath, without
getting a diagnosis or any real help. Finally, she did an Internet search
and found me, a specialist in medically unexplained illness. All her tests
were normal, but I listened to her and was ultimately able to make a
diagnosis of chronic fatigue syndrome. We then launched into the treatment of
her symptom-based illness, a slow process that unfortunately doesn't end in a
cure but often leads to improvement.

The fact that this woman couldn't find a doctor to help her until she found me says a lot about where the U.S. health care system is heading. The
economics of modern medicine have converted the doctor from Ben Casey to a
factory worker on a conveyor belt, and those economic forces are driving more
and more physicians toward specialties where they can spend less time with
patients and earn more money.

Learning how to make a diagnosis is a critical part of medical education. It requires the doctor to listen to the patient describe the illness and then put it in a personal health framework by asking about other symptoms, previous medical problems (extending to the patient's family) and elements of the patient's life story. Doctors usually schedule an hour for these initial
consultations, then 30 minutes for follow-up appointments.

Half an hour of a doctor's time is normally plenty for a straightforward
health problem and more than enough for a cold with a runny nose or a cough
with no fever. But what happens when your symptoms don't add up to a
clear-cut diagnosis? Studies have shown that in more than 50 percent of
cases, patient complaints don't have any diagnosable medical cause that can be determined by careful laboratory testing.
Pain, fatigue, dizziness and trouble sleeping are among the most common symptoms, and doctors have
problems with these because they don't point to any particular diagnosis.

When that happens, the diagnostic algorithm learned in medical school breaks
down. The doctor's not sure what's wrong with the patient, and if he has a busy office, he won't have time to think through the patient's complaints to arrive at a coherent diagnosis. Very often, when all the tests are normal and time has run out, the doctor will conclude a visit, as my patient's initial physician did, by saying: 'There's nothing really wrong with you. I'm sure you'll feel better in a few days - or weeks.'

Even doctors with time often prefer dealing with straightforward medical
problems. I have a friend who's an allergist in private practice. When I
asked him whether he'd be willing to work with some of my patients, he
quickly said no. Why, he said, would he want to tackle difficult cases like
that when he can take someone suffering from severe allergies and make them
better in a day?

Doctors are being lured away from primary care by economic factors as well.
Eighty percent of medical students have to borrow money for medical school.
The expected median debt of this year's graduating class is about $120,000
for state medical schools and $150,000 for private, according to the American
Association of Medical Colleges. At the same time, medical students face a
candy store of career choices, all with widely varying earning (and
debt-reduction) potential.

I, for instance, am a medical school professor with a practice devoted to
patients with medically unexplained symptoms such as fatigue and pain. My
patients often have complex medical histories and feel they're at the end of
their rope. If a patient has Medicare coverage for disability caused by an
illness, Medicare will reimburse me $196 for each hour of interaction with
that patient. After expenses and other charges, I'll keep $86, a very good
hourly salary.

But consider the neuroradiologist, who specializes in interpreting brain
MRIs. Just a few years ago, it would take a radiologist a long time to
organize and view many sheets of a patient's X-ray films, but today, thanks
to computerization, the well-trained neuroradiologist can assess dozens of
images of the brain in just a few minutes. He or she can probably read a
patient's images and dictate a report in about 15 minutes. At my previous
institution, the hourly reimbursement from Medicare was $492, and the
doctor's take-home totaled $216, a substantially better salary than mine.

Physicians in a procedure-driven specialty such as neuroradiology - and
there are many others, such as cardiology and anesthesiology - always earn
more than patient-centric doctors. American medical students are aware of
this as they make their career choices. And fewer and fewer are choosing
patient-oriented medicine: In 1996, American graduates filled 76 percent of
residency training slots in family medicine, while in 2002, they filled only
48 percent. We see similar shifts in general internal medicine. The
remaining positions are filled by foreign-born and foreign-trained medical
school graduates. They pass the same qualifying tests for licensure as
American graduates, but cultural diversity and varying communication skills may affect their approach to patients and their ability to hear subtleties in their patients' stories.

Society has come up with a partial solution to the growing gap in primary
care providers: 'physician extenders.' These master's level health-care
professionals are trained to deal with commonly occurring, easy-to-diagnose
problems: a flu, hay fever, a splinter, even severe chest pain. Usually,
however, they haven't had enough training to give them the know-how to sort
through a complex medical history to arrive at a diagnosis that isn't
immediately evident. When they're stuck, they have to call the physician, and
by then, the 30-minute visit is very often over. The patient is left hanging
and disappointed - on his or her own to figure out what to do next. The
inevitable result: patients falling between the cracks of classical medicine.

There's one silver lining in this situation: the increasing number of women
choosing medicine as a profession. Approximately 50 percent of most medical
schools' entering classes today are women. This trend may work to offset a
major patient complaint - that doctors don't spend enough time listening to
them. Research studies show that women in general and women physicians in particular are better listeners than men. Since the turn toward more women in
medicine is relatively recent, I'm not sure which path the young female
doctor will choose, but I can say anecdotally that quite a few of my own
female students seem to be choosing primary care - either family or internal
medicine. I hope that in the next few years, their presence may help offset
the dearth of U.S.-trained doctors in primary care.

Meanwhile, what are patients with an elusive diagnosis to do? If they're
fortunate enough to live near a medical school, they can search the doctor
list for generalists. Physicians in academic centers are encouraged to see
patients as part of their duties, and they often have more time than their
colleagues in the community. More important, patients can help themselves by
knowing more about their bodies, how they work and what can go wrong with
them.

But finally, patients will have to understand that finding a doctor who has the time to listen, diagnose correctly and then know how to treat them is
going to get harder and harder.
Reversing the trend away from
patient-oriented and toward procedure-oriented medicine will require
attention by legislators as well as medical educators. Reducing the debt of
newly minted doctors who choose primary care might be one way of doing this.
Cutting back on both the number of postgraduate training positions in
procedural medicine and the salary paid such trainees, while raising the
salaries of those in primary care, could be another.

None of this will happen, though, unless patients make their voices heard. Otherwise, they may just find themselves on their own the next time puzzling
symptoms arise.


--------
(c) 2008 The Washington Post Company

* * *

This is a common story among CFS patients: doctors who don't want to deal with them because they don't get better with the first prescription, and/or doctors who turn it around and put the blame on the patients. 

You can't win: if you're single, the doctor says the problem will go away if you get married; if you're married, he says you resent your husband and the problem will go away if you get rid of him; if you're divorced, you're depressed over that and the problem will go away as soon as you catch another man; if you're still sick after remarrying, then go back to "you resent your husband and should get a divorce".  I've been both single and married during the course of this illness, and the symptoms are the same.  It has nothing to do with my marital status.  But it's a quick-and-easy answer for a doctor who lacks the time or inclination to figure out what's really wrong.

If the doctors would listen carefully, they'd see where their theories break down.  However, it's faster and easier for them to turn cause and effect around: I didn't stop exercising because I got sick, I got sick because I stopped exercising.  The timeline doesn't fit, but they don't care ... their version makes sense and makes it easier to put the blame on me.  And, ta-da!, since I got sick because I stopped exercising, I will get better if I resume exercising!  Now, leave the room before the patient can argue that exercise makes the symptoms even worse.

Here's some food for thought: I recently heard a horror story about someone who was hospitalized in the US, and not a single nurse on the floor spoke English as a first language.  When a problem arose, none of them understood what was being said to them!  Fortunately, the patient didn't die.