Saturday, May 30, 2009

Video Online

 

Blood Volume and Cardiac Insufficiency

http://bit.ly/11JSTA

  Clinical science (Lond). 2009 May 26.

  Chronic fatigue syndrome: illness severity,
  sedentary lifestyle, blood volume and
  evidence of diminished cardiac function.

  Hurwitz BE, Coryell VT, Parker M, Martin P,
  Laperriere A, Klimas NG, Sfakianakis GN, Bilsker MS.

  This study examined whether deficits in cardiac
  output and blood volume in a Chronic Fatigue
  Syndrome (CFS) cohort were present and linked to
  illness severity and sedentary lifestyle.

  Follow-up analyses assessed whether differences
  between CFS and control groups in cardiac output
  levels were corrected by controlling for cardiac
  contractility and total blood volume (TBV).

  The 146 participants were subdivided into two CFS
  groups based on symptom severity data, severe
  (n=30) vs. non-severe (n=26), and two healthy
  non-CFS control groups based on physical activity,
  sedentary (n=58) vs. non-sedentary (n=32).

  Controls were matched to CFS participants using age,
  sex, ethnicity and body mass.

  Echocardiographic measures indicated that the
  severe CFS participants displayed 10.2% lower
  cardiac volume (i.e., stroke index and end diastolic
  volume) and 25.1% lower contractility
(velocity of
  circumferential shortening corrected by heart rate)
  than the control groups.

  Dual tag blood volume assessments indicated that
  CFS groups had lower TBV, plasma volume (PV) and
  red blood cell volume (RBCV) than control groups.

  Of the CFS subjects with a TBV deficit (i.e., >/=8%
  below ideal levels), the mean +/-SD percent deficit
  in TBV, PV and RBCV were 15.4+/-4.0, 13.2+/-5.0,
  and 19.1+/-6.3, respectively.

  Lower CFS cardiac volume levels were substantially
  corrected by controlling for prevailing TBV deficits,
  but were not affected by controlling for cardiac
  contractility.

  Analyses indicated that the TBV deficit explained
  91-94% of the group differences in cardiac volume
  indices.

  Group differences in cardiac structure were offsetting
  and hence no differences emerged for LV mass index.

  Therefore, the findings indicate that lower cardiac
  volume levels, displayed primarily by persons with
  severe-CFS, were not linked to diminished cardiac
  contractility levels, but were likely a consequence of
  a comorbid hypovolemic condition.

  Further study is needed to address the extent to
  which the CFS cardiac and blood volume alterations
  have physiological and clinical significance.

  PMID: 19469714 [PubMed - as supplied by publisher]
 
 
 

Friday, May 29, 2009

CFSAC Videocast Archive

If you want to look at the meeting :

------Original Message------
From: Tom Kindlon
To: Mary
Subject: FW:
Sent: May 29, 2009 6:57 PM

You might be intereted in this.

denis321
5/29/09 2:52 PM CFSAC Meeting Day #1 -- Videocast available


Day #1 is now available as archive for those who missed parts, had a slow
internet connection, or want to review points.

http://videocast.nih.gov/PastEvents.asp

The CDC presentation is part of this. I suggest people who disagree with
Reeves or felt he did not represent the feelings expressed at the CDC
stakeholder meeting write to the CFSAC.
Also ask them when we will have the public input session of this plan -
we're suppose to get one before June 30.

Contact Us
For further information, contact:

Chronic Fatigue Syndrome Advisory Committee (CFSAC)
Office of Public Health and Science
U.S. Department of Health and Human Services
Hubert H. Humphrey Building, Room 712E
200 Independence Avenue SW.
Washington, DC 20201
(202) 690-7650 (Voice)
(202) 401-4005 (FAX)
cfsac@hhs.gov (Email)

More CFSAC Testimony - Science

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ProHealth Library



Testimony to CFSAC on the hypothesis that
dysregulated H2S metabolism plays central role
in ME/CFS  –   Oct 28, 2008

by Marian Dix Lemle



May 29, 2009



Note: Marian Dix Lemle is a remarkable lay
researcher inspired by the desire to follow a lead she
thinks might explain and generate a cure for her
daughter's 'chronic fatigue syndrome' (ME/CFS).

She has worked tirelessly for more than two years to
interest the world's top experts in her hypothesis
that hydrogen sulfide (H2S) plays a central role in
ME/CFS.

And her efforts took on new meaning May
28, 2009, the day Belgian researcher Dr.
Kenny De Meirleir called a press conferen-
ce in London to announce a theory of
ME/CFS that centers around testing for
dysregulated H2S metabolism:
http://bit.ly/FnhCe



``````````


Good afternoon, Chairman Oleske, members of the
Chronic Fatigue Syndrome Advisory Committee, and
concerned members of the CFS community.

My daughter's life - and by extension, our family's
world - were turned upside down four and half years
ago when our beautiful daughter, who had been
President of her graduating class with a very bright
future ahead of her, came down with what was then
an unspecified virus, and was later diagnosed with
the absurdly named disease "Chronic Fatigue
Syndrome."


For ten years prior to her getting sick, I had on the
table in the living room this little artist's book called
The Blind Men and the Elephant. In this well-known
parable, one blind man touches the elephant's side
and is certain he is touching a wall. The second
blind man grabs a tusk and is certain he is holding a
spear. The third touches a squirming trunk, and
thinks it is a snake, and on it goes…


I cherished this book because it so simply and
elegantly illustrated how our conceptual framework,
our view of a problem, can limit our ability to see
the larger whole, particularly when combined with
unwarranted certainty.

It reminded me of the importance of thinking more
broadly about a problem and maintaining an open
mind, something that I, in turn, will ask of you here
today, as I discuss a hypothesis I developed on
CFS/ME.


I have been working in a very promising new area of
research, akin to the discovery of nitric oxide in its
importance, for which the Nobel Prize was awarded.
Very few scientists or physicians are familiar with it.

I should add that I am not looking for any research
money, but instead, I am hoping to interest
researchers in this idea.

I could not have gotten to this point without the
support of Dr. Carl Peck, a former Assistant Surgeon
General, who, early on, felt that I had made a
discovery and guided me through the process of
writing the hypothesis, which was e-published ahead
of print in September [2008] by the journal Medical
Hypotheses.

[Note: Unfortunately the article "Hypothesis: Is
ME/CFS caused by dysregulation of hydrogen sulfide
metabolism?" had no abstract. Access to the text via
the publisher requires subscription or payment -
though Googling on the title will pull it up in several
places.]


Almost two years ago to the day, I attended a
lecture by a scientist who was able to induce a state
of suspended animation in mice using the gas
hydrogen sulfide, or H2S.

As I listened to him, I was struck by the similarities
between what happened to the mice, i.e., a
decrease in core body temperature, an apnea-like
sleep state, reduced heart and respiration rates, and
a severe metabolic drop, and what happens to
people with CFS/ME.


Out of that idea grew my hypothesis that CFS/ME is
caused by dysregulation of hydrogen sulfide
metabolism. Further I postulate that the
multi-system disturbances in the homeostasis of
endogenous H2S result in mitochondrial dysfunction.


Research on H2S – the gas that causes the
characteristic smell of rotten eggs – dates to the
1700's. At high concentrations, H2S is
instantaneously deadly, on a par with cyanide.

At low concentrations, some evidence suggests that
H2S has beneficial effects and can act as an
endogenous biological mediator. In fact, the brain,
pancreas and the gastrointestinal tract produce H2S.


Endogenous H2S plays a role in regulating blood
pressure, body temperature, vascular smooth
muscle, cardiac function, cerebral ischemia, and in
modulating the hypothalamus/pituitary/adrenal
axis. It even has been called a "master metabolic
regulator."


We refer to CFS/ME as a systemic disease, but no
unifying thread has been found. H2S directly
affects the neurologic, endocrine and immunologic
systems - the very systems most involved in CFS.
In persons with CFS/ME, one plausible etiology is
an increase in the activity of endogenous H2S,
thereby inhibiting mitochondrial oxygen utilization.


In this view, fatigue and the other CFS/ME symptoms
could be due to diminished physiological and cellular
energy due to reduction in the capacity of
mitochondria to utilize oxygen and synthesize ATP.


Specifically, H2S binds to the mitochondrial enzyme
cytochrome c oxidase, which is part of Complex IV of
the electron transport chain, and attenuates
oxidative phosphorylation and ATP production.


Consistent with this finding, recent research on low
level H2S toxicity points to increased formation of
free radicals and depolarization of the mitochondrial
membrane, a condition that would decrease ATP
synthesis.

If poisoning renders mitochondria inefficient, one
would expect cells to shift to anaerobic mechanisms,
a shift that has been reported for CFS patients.


Also consistent with this hypothesis is the fact that
mitochondria are organelles descended from
ancient eukaryotic sulfur-utilizing microbes. Thus,
it is not surprising that they show a very high
affinity for sulfide. In other words, they have
retained the ancient capability of utilizing this gas.


Given a predisposing genetic background, H2S may
lead to genomic instability or cumulative mutations
in the mitochondrial DNA. Alternatively, the effects
of H2S could be initially mediated by changes in the
redox potential of cells or changes in their sulfur
metabolism.


Of importance, H2S plays a pivotal role in both
aerobic and non-aerobic organisms as a signaling
molecule.

Bacteria in the gut both produce H2S and utilize it
as a substrate alternative to oxygen. This is of
particular relevance in the gastrointestinal tract,
where unusually high levels of gram-negative
bacteria, which increase intestinal permeability
have been found in patients with CFS/ME.


In addition to bacteria, many of the foods and
substances people with CFS are sensitive or allergic
to produce H2S under certain conditions, such as
mold, milk, eggs, wine, corn syrup and the
ever-ubiquitous yeast.


CFS/ME is a model disease for multi-system
disturbance. It is my hypothesis that the
mitochondria in patients with CFS/ME, organelles
required by every cell to sustain life, are unable to
adequately utilize oxygen.

This mitochondrial disturbance could be due to the
combined effects of anaerobic conditions known
to occur in CFS and associated low-level H2S
toxicity. This increase in H2S alters fine signaling
necessary for body homeostasis and, in my
hypothesis, causes CFS/ME.



New discoveries on H2S are being
made every day.


I would encourage you to go to PubMed or Google
and type in your area of research and "H2S."


* If you are interested in cardiac function, you will
find last week's article in Science Daily about John
Hopkins' Solomon Synder's finding that H2S controls
blood pressure.

* If you are interested in catecholamines, you can
read about the inhibitory action of H2S donors on
norepinephrine.

* If you are interested in immune function, you will
find that exogenous hydrogen sulfide induces
functional inhibition and cell death of cytotoxic
lymphocyte subsets of CD8 (+) T cells and NK cells.

• If you are prescribing vitamin B-12 to your
patients, you will see evidence supporting
hydroxocobalamin as an antidote against H2S
poisoning, and so on.


My hypothesis paper does not address the fact that
H2S is increasing in the environment as a result of
global warming, natural gas and crude oil refining,
centralized animal feeding operations, and chemical
processes.

It seems logical, though, that external levels could
affect internal levels, just as oxygen does. Just
yesterday I came across an article in last week's
Science magazine about the role green sulfur
bacteria played in the Permian-Triassic extinction, as
H2S levels rose and oxygen decreased in the oceans.


In summary, I ask you to keep an open mind and
support this idea. A simple program could be
undertaken. There are several genetic
polymorphisms and enzyme deficiencies related to
H2S and sulfur metabolism that should be
investigated, after which H2S and associated
chemicals such as thiols and glutathione levels in
the body could be assessed.


As H2S cuts across disciplines and appears to be
implicated in several diseases, I think it would be an
important focus for NIH. I feel confident that such a
program would lead to discoveries.


It may well provide a unifying lens through which
to view the diverse manifestations of this complex
disease. With determination and resources, we
may discover that the disparate parts so many
dedicated people have been researching for two
decades can begin to add up to a new
understanding of this very complex disease.



Thank you.





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All Help ME Circle's articles may be reposted,
but leave the header intact please - or for
printing matter: give the name, address, date,
and free membership.




Doctors' Voices

From John Herd:

It is impossible to predict how the CDC will react to the recent
CFSAC and IACFS/ME recommendations. Whether the CDC acts upon those
recommendations or not, it will not take anything away from the
importance of what transpired at the CFSAC meeting yesterday.
Throughout the history of ME/CFS advocacy many of us have called for
ME/CFS doctors to take a more proactive role on the advocacy stage, to
speak out on key ME/CFS issues.

Their public voices have been needed in the dialogs about improving
how the health departments address ME/CFS matters. We have needed their
public voices on matters of the various health departments levels of
research funding and the types of research being funded. And we have
needed the credibility of their voices when possibly flawed and
negative biased agenda driven science threatens to undermine the kinds
of research and clinical care we need.

Their speaking out on advocacy issues can do more than help
patients. It can help increase levels of research funding, the types of
research funded and the tools necessary for them to offer  improved
clinical care to ME/CFS patients. In other words, doctors speaking out
can help improve their research and clinical care interests. We have
needed them to speak out on their own professional behalf.

For the past two decades though there has generally seemed to be in
the ME/CFS medical sector a view that such speaking out publicly be
left to the advocates. The usual reasoning has typically been that they
are too busy in their labs and clinical settings to do so.

Yesterday the ME/CFS medical sector resoundingly came out of the
closet, or more accurately their labs and clinical offices. They took a
very proactive role in trying to fix the broken governmental ME/CFS
system that profoundly effects their work and all patients. For that I
applaud them.

The CDC governs from within. It has ignored external input in the
past, even from the Department of Health and Human Services
administration and other DHHS agencies. Despite their tendency to steer
their own ship, what the CFSAC and IACFS/ME have done will be hard to
ignore. This is especially true if the office of the Secretary of
Health upon seeing the recommendations wants the matter cleaned up.

May all of our voices continue to harmonize in calls for changes that will improvement ME/CFS research and clinical care.

John Herd

Thursday, May 28, 2009

CFS in Children


TESTIMONY PRESENTED TO THE
U.S. DEPT. OF HEALTH AND HUMAN SERVICES
CHRONIC FATIGUE SYNDROME ADVISORY
COMMITTEE


Pediatric ME/CFS
CDC CFS Research Program

May 29, 2009

submitted by Jill McLaughlin


I have been involved in ME/ CFS advocacy for nearly a decade. First
and foremost as a parent and caregiver, but I have also worked
with patient organizations, participated in several Department of Health
and Human Services (DHHS) committee meetings, attended and
participated in related conferences, and currently I am on a committee
of the International Association for Chronic Fatigue
Syndrome/Myalgic Encephalomyelitis (IACFS/ME).


During that time, CDC has done virtually nothing to study or address
ME (or what is being called CFS, commonly referred to as ME/CFS)
in children, or to promote physician, school or public education
and awareness of the illness or to even acknowledge that it exists.
When the CDC whistleblower scandal regarding the CDC misuse
of funds broke several years ago, a large study on children was
summarily dropped, ostensibly due to lack of funds. When the
money was restored, the study on children was never resumed.


The medical community and the public look to the federal
health agencies for information and guidance, but there
has been very little leadership in this area.


CDC did launch an expensive national campaign for chronic
fatigue syndrome for education and awareness. The message
was "Get Informed, Get Diagnosed, and Get Help." The general
reaction to the slogan was: about what - fatigue and
unwellness, by whom, and how? The erroneous assumption
being that there are healthcare providers capable of diagnosing
and treating it. According to the CDC only about 15% of CFS
patients in the U.S. have been diagnosed. What was suggested
did not exist and was next to impossible with the current
physician mindset and available research.


This campaign was a waste of time and money (except for the
CFIDS Association as contract recipients). Marketing and PR
are no substitute for science and physician education.


The illness is housed and studied in the National Center
for Zoonotic, Vector-Borne, and Enteric Diseases (ZVED),
yet most of the CDC CFS research is stress related.


A review of the scientific literature on the relationship between
stress and disease, published in JAMA,  found that stress is
a contributing factor in a wide range of  human disease. It is
hardly unique to CFS, yet CDC studies do not consider these
findings or use adequate study controls.


CDC research focuses on a few narrow, select gene studies
involving HPA axis as it relates to PTSD or stress disorders,
giving the impression that the illness is psychosomatic.


Consequently, many doctors still do not believe in CFS
or that it is a physical illness or that it's serious or disabling.
Most doctors, particularly pediatricians, still do not know
how children present with this illness or how it is diagnosed
or  treated.


Even intelligent parents  who are told by medical professionals
that there is nothing wrong with these kids and they just need
tough love and to try harder may take this at face value. If the
experts say it's nothing then these kids must just be faking or
making it up.


While the name issue is sometimes dismissed as unimportant,
trivial or "political," research done by DePaul University has
shown that the name 'Chronic Fatigue Syndrome' can
influence how patients are perceived and ultimately
treated by medical personnel, family members, and the
general public, and that the negative stigma associated
with CFS may be partially due to the trivializing
name. The article, "How Science Can Stigmatize:
The Case of Chronic Fatigue Syndrome" discusses how
flawed scientific policies have contributed to the
stigma associated with CFS and have affected research
findings and clinical care.


Schools are often the most intractable, though school problems
are secondary to the lack of education and awareness and
sufficient backup from the medical community. Calling the
illness 'chronic fatigue syndrome' implies that the child is tired
rather than suffering from multiple disabling effects of brain,
CNS and immune system dysfunction (as typically found in the
illness that was previously known as Myalgic Encephalomyelitis
or ME). In general,  "fatigue" is no excuse to miss school (as in
"we have sick kids with real diseases who 'try' to come to
school so no excuse for the tired ones").


Absent adequate research and information, it has become
too easy  to assume that the illness is psychological.
Patients and particularly children are being harmed by these
erroneous assumptions. The overwhelming experience as
well as some available research shows that pacing and living
within the energy envelope is the most effective way to manage
the illness and that it is harmful to push beyond the boundaries
and force recovery. Yet much of the advice on "CFS" from
uninformed physicians is to the contrary.



It has become impossible to separate the medical and
educational systems. School absences often become the
focus and trigger suspicions of truancy or educational neglect.
Yet children are often made worse by inappropriate or unrealistic
educational demands and pushing too hard. It is abuse to send
a child to school when they are ill but if the illness is not
recognized by pediatricians, parents have nowhere to turn
and may even be charged with neglect if they do not send
them to school.


Families of ME/CFS children can face their worst nightmare
at the hands of these misinformed doctors and school systems.
Parents are being falsely accused of Munchausen Syndrome
by Proxy, also known as Factious or Induced Illness
(MSBP/FII), simply because the child has a neurological
illness that is often stigmatized and misunderstood. False
accusations of MSBP/FII have frequently involved social
service agencies regarding ME/CFS children, with the result that
the child may be removed from the home.


The Tymes Trust children's charity in the UK produced
"The Forgotten Children" Dossier in 2003. A  survey was
conducted and featured on BBC Panorama, which  showed
very disturbing statistics regarding the accusation rate of
Munchausen Syndrome by Proxy (MSBP/FII) of parents with
ME/CFS children.


Statistics at that time showed that overall accusations
of Munchausen's Syndrome by Proxy affected
just one in 100,000 families.  Yet 7% of children from
families questioned had been subject to child protection
proceedings and court proceedings had either been
threatened or carried out. If this is representative, it implies
that seven out of every one hundred children with
ME/CFS will be threatened with being taken away from
their parents.


Cases of children with ME/CFS being taken into custody
due to false allegations and accusations of abuse, neglect
and MSBP/FII are by no means diminishing but are continuing
worldwide. 


Thus it was extremely disturbing that a press release was
issued on a CDC funded study which identified childhood trauma,
sexual abuse and emotional maltreatment as a major risk factor
for the development of CFS. Yet other studies on the relationship
of trauma to CFS have shown the opposite.


Apparently no consideration was given by CDC to an extensive
risk factor study ("Risk factors for chronic fatigue syndrome/myalgic
encephalomyelitis: a systematic scoping review of multiple predictor
studies") that reported on various potential risk factors for the
development of CFS.  It concluded that definitive evidence
that appears meaningful for clinicians is lacking.


Why was CDC studying something as vague as childhood
trauma and when CDC has not looked into more obvious
or compelling risk factors associated with physical
or biological rather than psychosocial aspects.


For example, there is  widespread agreement that a variety
of infections are capable of precipitating ME/CFS (which the
National Center for Zoonotic, Vector-Borne, and Enteric
Diseases (ZVED) should be able to properly study). Furthermore,
if an antigenic challenge by infection can precipitate ME/CFS,
then it would follow that vaccines could act similarly. Lloyd
et al reported that several patients linked the onset of ME/CFS
to receiving a vaccination in the absence of infection.
These associations have been reported by Dr. Byron Hyde
of Canada and by Dr. Charles Shepherd of the UK and were
included in the CMO report (Report to the Chief Medical Officer
of an independent working group to the UK National Health
Service).


CDC constantly focuses on the role of stress, yet it is very
stressful to have an illness that remains unrecognized
and unaccepted. Research has found that the majority of
CFS patients seeking medical treatment  reported feelings
of estrangement, and one study found that 66% of individuals
with CFS felt that they were made worse by the care they
received
(source: Prohealth Live Chat Q&A with ME/CFS
Research & Policy Leader Leonard A. Jason, PhD, August 14,
2007).


Dr. Nancy Klimas, renowned expert and past President of the
International Association for CFS/ME, was quoted in the Miami
Herald as saying  "I've had patients who met post-traumatic stress
disorder criteria.. . . where their trauma was their interaction with
their physician around this illness. They came to a doctor with
Chronic Fatigue Syndrome; they left the doctor with PTSD."


Perhaps the finding of PTSD or stress related gene expressions
in ME/CFS is iatrogenic. CDC's focus on stress or related gene
abnormalities may be studying the result, not the cause.


And consider how stressful it must be, particularly for sick
children, who have lost much of their formative years and
identity, to be dismissed, blamed, viewed as lazy, malingering
or irresponsible, when nothing could be further from the truth.
When in fact they generally try much harder and push well
beyond what they are capable of physically and cognitively
to the detriment of their own health.


With any other illness these children would be heroes and
applauded for their tenacity and efforts, with all kinds of help
and support available to them and their families. Anyone facing
a crisis or illness always admits they they could not have
managed or survived without support and understanding, yet 
patients with ME/CFS often have none.


As difficult as it is for adults, think of what happens to children
who are not believed and forced to attend school and gym class
and are literally punished for being sick. Adults may be fully
disabled and do not have to work, yet children are required
to attend school.


Health should come first, and children should be given sufficient
time to recover  before returning to school. Sustainable,
manageable or even home-based education is important
to meet education requirements.


These families are not only trying to fight the illness itself to care
for their children but must constantly deal with all of the prejudice
and misinformation surrounding it. Affected children continue to
struggle for recognition of their needs, and often are dismissed
or even bullied by medical and educational professionals. It is
the children and families that are being abused and stressed
by the failure of the systems, agencies and institutions to
properly research the illness and educate those who should be
helping and caring for them.


With support and concern or even basic understanding lacking,
it can become overwhelming for families. Parents have to try to
assume the role of doctor, nurse, teacher, psychologist and
often best friend. Over time many children are never able to
work and contribute financially, many cannot drive, so the
burdens on families are enormous. It is not uncommon to
have mothers who have ME/CFS as well as the child, or to
have more than one child with it. It  becomes nearly a full
time job handling all of the medical, school and
social/emotional issues.


Children can miss a great deal of school, often years. A UK
study (Dowsett/Colby) found that ME/CFS constitutes the
biggest cause of long-term sickness leading to absence
from school, in both staff and pupils. It found that the scale
of the problem in children is substantial, and the pattern of
illness showed a clustering of cases.


Many children have not received an adequate education, have
had very limited social interactions  and normal childhood
and "life" experiences and become very isolated. They may
very well end up having emotional problems, depression or
would understandably be angry, resentful or distrustful
of authorities.


These children may get so far behind and frustrated that they
simply drop out of school. Many families have such traumatic
experiences with schools that they literally just try to stay beneath
the radar of suspicion and bide their time until the child is 16
and can drop out.


Under these circumstances, how may children with ME/CFS,
or those who are not properly diagnosed or treated, have
turned to drugs or alcohol, or even suicide? 


Studies have looked at the profound economic impact of CFS
in the adult population, but what of the future effect on these
children and society? Some studies have found that children
may recover in their late teens or early 20's, but even for those
lucky enough to recover, many have still missed their formative
years and large amounts of school, often years. These educational
opportunities  are completely lost with regard to public education
as most school districts do not provide services beyond age 21.


For those who get sick in childhood or in their teens and do not
recover, many get worse over time, unable to work or even become
bedridden. And aging parents struggle and worry about what will
happen to their children, as disabled adults,  when they can no
longer care for them.


How successful can a research program be when the real stakeholders
(i.e. patients) report thusly. In the 20 years since the inception of the
CDC "CFS" research program, there has been no real progress of
direct benefit to patients in terms of recognition, diagnosis, treatment
or basic care. The merit of the investment should be judged by the
final result.


This situation must change with. The real tragedy is that with proper
diagnosis and treatment, children can receive appropriate care and
support even if there is no cure, and with appropriate accommodations
they will be able to access the best educational opportunities possible. 


Jill McLaughlin



Input on CDC CFS Strategic Research Plan



Discontinue the use of the new "emperical" definition and
rebranding CFS as a "stress-related disorder."  This
definition is too non-specific, reduced to questionnaires based
on a Wichita 2-day hospital stay, and excludes the most
serious patients and includes patients who mainly
have depression.


Adopt the Canadian Myalgic Encephalomyelitis/ Chronic Fatigue
Syndrome: Clinical Working Case Definition, Diagnostic and
Treatment Protocols. A DePaul study ( "Comparing the Fukuda
et al. Criteria and the Canadian Case Definition for Chronic
Fatigue Syndrome") found that the Canadian criteria group, in
contrast to the CFS Fukuda group, had more variables that
statistically significantly differentiated them from the psychiatric
comparison group. The Canadian criteria selected cases with
less psychiatric co-morbidity, more physical functional impairment,
and more fatigue/weakness, neuropsychiatric, and neurological
symptoms.


Recognize and focus research direction on known abnormalities of
reduction in grey matter of the brain, mitochondrial abnormalities,
channelopathies and aberrant ion transport, low natural killer cell
cytotoxicity, cytokine shift from Th1 to Th2, sympathetic nervous
system hyperactivity, cortisol deficiency, left ventricular dysfunction
in the heart and other cardiovascular abnormalities that can have
serious clinical implications
.  A variety of theories have been proposed
to explain these findings and offer insight into the pathophysiology,
including infectious agents, viruses, bacteria, tick borne infections,
immune dysregulation, neuroendocrine problems, as well as
neurologic abnormalities, oxidative stress and kindling.
We need clinical and laboratory-based studies of homogeneous
groups of patients to produce meaningful data that can be replicated
and used to provide insight into the nature and pathophysiology,
not  questionnaires  about fatigue and "unwellness."


Expand the CDC CFS research program.  One person should not
have full control of any research program or budget. Then fund and
award contracts and grants to outside investigators who have
proven abilities and accomplishments in targeted areas.


Expand the genetic research beyond narrow focus of stress related
genes and HPA axis abnormalities.  Genomics and proteomics have
proven to be useful in the detection of diseases and development of
therapeutic modalities.  Use genomic and proteomic tools that are
available for the diagnosis of infectious diseases.


Extend investigations and collaboration with others in the field doing
similar work and share data.


Remove references and links to the thoroughly flawed and discredited
NICE (UK NHS National Institute for Health and Clinical Excellence)
guidelines  for diagnosis and management. These guidelines do not
follow the neurological WHO classification and  promote CBT and GET
(graded exercise therapy), which has been shown to make patients
worse. Pacing involves the conservation of energy, not expending more to force recovery.


Discontinue the "Awareness" campaign PR Marketing strategy. Millions of
dollars have been wasted that could have been put toward research
and provider education, which is much more important than having
photo exhibits at Malls. PR and Marketing are no substitute for science
and research. Establish broader consideration of the awarding of
contracts and collaborations and have measurable outcomes
by which progress can be evaluated. Have content of all material
developed and approved by a wide range of experts, not exclusively
by CDC or under the control of one organization. Establish transparency
of the use of funds and keep track of and report on progress of all
contracts through benchmarks and outcomes, which are made public. 
Too much money and time have been wasted on superficial, ill-conceived,
non-productive endeavors that have had little effect.


The International Association for Chronic Fatigue Syndrome/Myalgic
Encephalomyelitis (IACFS/ME) has developed a case definition for
Pediatric ME/CFS.  The existing case definitions have been developed
for adults and may not be appropriate for children. The IACFS/ME
convened a working group of experts who determined that there
is sufficient evidence to put forward a case definition for children
and adolescents. Having a consistent and reliable case definition
is of utmost importance to properly diagnose and classify patients
for research in order to determine the pathophysiology, identify
biomarkers and develop effective treatments.


The CDC should recognize the IACFS/ME Pediatric Case
Definition and use it as the basis to develop a research program
on pediatric ME/CFS with focus on determining the cause, risk
factors, biomarkers and effective treatments. Since children
with ME/CFS can become adults with the illness over time,
the natural history must also be considered. 


Jill McLaughlin


------

References:

The Miami Herald Friday, 05.01.09 HEALTH Q&A "Seeking answers
for chronic fatigue syndrome" by Gigi Lehman

The Energy Envelope Theory and Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome," Leonard Jason, PhD  AAOHN Journal Vol. 56  
No. 5   May 2008   

Jason, L.A., Holbert, C., Torres-Harding, S., & Taylor, R.R.
(2004).  Stigma and chronic fatigue syndrome: Surveying a
name change. Journal of Disability Policy Studies, 14, 222-228.

Reeves WC, Wagner D, Nisenbaum R, Jones JF, Gurbaxani B,
Solomon L, Papanicolaou DA, Unger ER, Vernon SD, Heim C,
Chronic fatigue syndrome - a clinically empirical approach to its
definition and study  BMC Medicine 3:19, 2005

"Problems with the New CDC CFS Prevalence Estimates"
Leonard Jason, Ph.D., DePaul University, IACFS/MEwebsite
Case Definitions, CDC Criteria: http://www.iacfsme.org/IssueswithCDCEmpiricalCaseDefinitionandPrev/tabid/105/Default.aspx

Carruthers BM, Jain AK, De Meirleir KL, et al. Myalgic encephalomyelitis/chronic
fatigue syndrome: clinical working case definition, diagnostic and treatment
protocols. Journal of Chronic Fatigue Syndrome. 2003;11:7-116.

Cohen S, Janicki-Deverts D, Miller GE. Psychological stress and disease.
JAMA. 2007 Oct 10;298(14):1685-7.

De Lange, FP, Kalkman, JS, Bleijenberg, G, Hagoort, P, van der Meer JWM,
& Toni, I. Gray matter volume reduction in the chronic fatigue syndrome.
NeuroImage, 2005;26:777-781.

Patarca-Montero, R, Mark, T, Fletcher, MA, & Klimas, NG. Immunology of
chronic fatigue syndrome. Journal of Chronic Fatigue Syndrome,
2000;6:69-107.

Jason, L.A., Taylor, R.R., Stepanek, Z., &  Plioplys, S. (2001). Attitudes
regarding chronic fatigue syndrome: The importance of a name. Journal
of Health Psychology, 6, 61-71.

Hyde BG, JA; Levine, P. The clinical and scientific basis of myalgic
encephalomyelitis/chronic fatigue syndrome. Ottowa, Ontario: The
Nightingale Research Foundation; 1992.

Kennedy G, Spence VA, McLaren M, Hill A, Underwood C, Belch JJ.
Oxidative stress levels are raised in chronic fatigue syndrome and
are associated with clinical symptoms. Free Radical Biology and
Medicine. 2005;39(5):584-9.

Jammes, Y, Steinberg, JG, Mambrini, O, Bregeon, F, &
Delliaux, S. Chronic fatigue syndrome: assessment of increased
oxidative stress and altered muscle excitability in response to
incremental exercise. Journal of Internal Medicine.
2005;257:299-310.

The Forgotten Children - A Dossier of Shame, Tymes Trust
Publication. Presented to the Prime Minister on the 12th of
May 2003. It details shocking experiences and statistics that
the organization has collated from information supplied by
families of children with ME.

University of North Carolina at Chapel Hill (2008, August 20). '
Chilling' HardshipRates Among Families Raising Disabled
Children. ScienceDaily.

Lloyd A et al. What is myalgic encephalomyelitis? Lancet. l988; l:
1286-7.

Weir W. The post-viral fatigue syndrome. Current Medical Literature:
Infect Dis. l992; 6: 3-8.

Hyde B. The clinical investigation of acute onset ME/CFS and
MS following recombinant hepatitis B immunisation. Second World
Congress on CFS and Related Disorders, Brussels. 1999; September
9-12.

Report of the working group on the possible relationship between
hepatitis B vaccination and the chronic fatigue syndrome. Canadian
Med Assoc J. l993; 149: -9.

Send a Message to NBC

This Sunday, following Meet the Press, a 30-minute "infomercial" attacking a public healthcare option is set to air on NBC. The ad is the work of disgraced former hospital CEO Rick Scott and his group "Conservatives for Patients' Rights."

Rick Scott has a track record of deceit.

Scott's previous ads contained blatantly false statements and misleading excerpts of interviews with healthcare professionals. If Scott's 30-minute "documentary" contains falsehoods, NBC could be liable for an FCC violation and serious fines. Furthermore, Meet the Press needs to know that their credibility is being used by Rick Scott, and will be tarnished by the association to these swiftboat style attacks.

Lawyers from the Service Employees International Union have sent a letter to NBC demanding they don't run the ad. It is up to us to back them up with the voices of thousands of viewers demanding action.

DEMAND NBC AND MEET THE PRESS STOP SWIFTBOATING OBAMA'S HEALTHCARE REFORM

DFA and our partners are not the only organizations raising serious questions about Rick Scott and Conservatives for Patients Right's credibility. The highly-respected website Factcheck-org, run by the non-partisan Annenberg Public Policy Center of the University of Pennsylvania, has labeled Scott's prior advertisement as "very misleading."

CPR's weak rebuttal to these criticisms should have given NBC pause before agreeing to air the latest iteration of these advertisements in the full "documentary".  Essentially, CPR's rebuttal conceded that it is painting a scenario that has not been proposed by President Obama or Democratic Congressional leaders and, indeed, Factcheck-org labeled CPR's response as "nonsense."

Based on Rick Scott and Conservatives for Patient Rights records, this 30-minute fake "documentary" will be false, deceitful, and filled with distortions. It is up to us to stop NBC from running the ad.

PLEASE SEND YOUR MESSAGE TO NBC NOW

As a back-up, if we don't succeed in stopping NBC from showing the fake "documentary," we've joined with other healthcare reform advocates and organizations to shoot a 1 minute rebuttal ad featuring Governor Howard Dean, M.D. to run immediately afterwards.

Time is not on our side right now, so we're working as fast as we can. We must send NBC a strong message.

Let's hope we don't need to show our rebuttal ad. Let's get NBC to do the right thing and stop the swiftboating of a public option and Obama's healthcare reform.

Thank you for everything you do.

-Charles

Charles Chamberlain, Political Director
Democracy for America


Democracy for America relies on you and the people-power of more than one million members to fund the grassroots organizing and training that delivers progressive change on the issues that matter. Please Contribute Today and support our mission.
Paid for by Democracy for America, http://democracyforamerica.com/ and not authorized by any candidate. Contributions to Democracy for America are not deductible for federal income tax purposes.
* * *
The organization behind this has had an ad running for several weeks to the effect that government-run health care is bad because people will be denied care, care will be delayed, etc., resulting in permanent problems.
 
Talk to people who already have their employer-provided health insurance through an HMO, and you'll find that they've been suffering these same problems at the hands of the HMO for years; the only difference is that the HMO makes a huge profit which is passed along to their stockholders, which government-run health care does not.
 
Personally, the first time I got sick, I had gold-plated health insurance that would have covered anything I wanted or needed.  But what it couldn't guarantee me was a doctor who knew anything about my disease.  He refused to acknowledge that the problems had all started with a flu-like illness months before, and created a psychiatric explanation that didn't fit the facts, but satisfied his need to write something in the records so he could stop looking for a physical explanation.
 
Again, when I entered this relapse, I had insurance that would have paid more to the doctor, the more that was done for me.  I was refused requested tests not because the insurance said No, but because the doctor had already decided that the only thing that could possibly be wrong with a divorcee was that she was depressed, and that no further tests or medication was required. 
 
You can't blame my INSURANCE for the fact that I deteriorated to the point I'll never fully recover; they paid in full every bill that was presented to them in that time period -- the problem was doctor incompetence, and that will exist no matter who is paying the bill.
 
I am convinced that this Conservatives for Patients Rights is not concerned with YOUR rights to good medical care, but with the insurance companies (and their stock holders) who will lose their huge profits if the government takes over health insurance. 
 
 
 

Kaleidoscope Magazine seeks disabled contributors

Kaleidoscope magazine creatively focuses on the experiences of disability through literature and the fine arts. Unique to the field of disability studies, this award-winning publication expresses the experiences of disability from the perspective of individuals, families, healthcare professionals, and society as a whole. The material chosen for Kaleidoscope challenges and overcomes stereotypical, patronizing, and sentimental attitudes about disability. We accept the work of writers with and without disabilities, however the work of a writer without a disability must focus on some aspect of disability.
The criteria for good writing apply: effective technique, thought-provoking subject matter, and in general, a mature grasp of the art of story-telling. Writers should avoid using offensive language and always put the person before the disability.Kaleidoscope accepts:

Non-fiction
Articles relating to both literary and visual arts, interviews, or personal accounts – 5,000 words maximum/double spaced.
Fiction
Short stories with a well-crafted plot and engaging characters – 5,000 words maximum/double spaced.
Poetry
Poems that have strong imagery, evocative language – six poems maximum.
Book reviews
Reviews that are substantive, timely, powerful works about publications in the field of disability and/or the arts. The writer's opinion of the work being reviewed should be clear. The review should be a literary work in its own right – 5,000 words maximum/double spaced.
Visual arts
Art of all media, from watercolor and charcoals to collage and sculpture; six to 12 works maximum. We accept black and white glossy photos, 35mm slides and color photos. Any art submitted digitally must be in a high-resolution (minimum of 300 dpi) .tif format converted to CMYK (we cannot guarantee color accuracy of RGB files) or grayscale to ensure the best print quality. If art is selected for the cover, we may request a color guide print to ensure color accuracy. The photos should have a neutral background with the art as the main focus. Include captions on the photos stating the size, medium, and title of work.
Payment is made upon publication and varies from $10 to $125, plus contributors receive two complimentary copies of the magazine. Copyright reverts to author upon publication.

UDS considers unsolicited material (always include SASE), accepts simultaneously published work, acknowledges receipt in two weeks, rejects or accepts within six months, and reserves the right to minor editing without author's approval (substantive editing with approval). Writers and artists may also be asked for permission to publish art and excerpts online.

Kaleidoscope is published twice a year, in January and July, with submission deadlines of August 1 and March 1. Please send your qualifying submissions to:

United Disability Services
Kaleidoscope Magazine
Gail Willmott, Editor-in-chief
701 South Main Street
Akron, OH 44311-1019

Phone: 330.762.9755
Fax: 330.762.0912
Email: kaleidoscope@udsakron.org
http://www.udsakron.org/services/kaleidoscope/guidelines.asp
 

Wednesday, May 27, 2009

Quote of the Day from CFSAC Meeting

Nancy Klimas said, "I've never seen anything like this in any other area of medicine. This disease is broken. They get no research, no doctors - it's completely broken."
 

Tuesday, May 26, 2009

If a Tree Falls in the Forest -- Isolation and CFS

http://bit.ly/MmS0J


empowHER

WOMEN's HEALTH ONLINE



Isolation and Chronic Fatigue Syndrome:
If a Tree Falls in a Forest ...

Written by Jody Smith

If a tree falls in a forest, and no one hears it...
does it make a sound?


To the chronically ill, this is more than just a
philosophical question.

We are people living out of the loop and our
connection to the rest of the world can be tenuous.
Some of us have more of a social network and some
of us have less.

Some people with a chronic illness are very much
alone.

Most people don't want to hear the long descriptions
of symptoms, the loneliness, the feelings of isolation
and alienation. They don't want to be the sounding
board for the person who feels they've lost any
normal semblance of having a "witness" to their life
and existence.

The invalid is very self-absorbed. They have to be. It
is a full-time job rebuilding their life and they can't
afford NOT to be very, very focused upon this.
And
they will repeat, and repeat and repeat the things
that they need someone to hear.


When the sick one has a revelation, and no one
wants to hear it, they are lessened. Their sense of
self, of their place in this world, becomes
precarious.


I remember being told by a well-meaning friend a
few years ago, that I should not think that my value
as a person was any less now that I was not able to
"produce".

But she was wrong.


Should my value be less? Should my life be less
significant than the life of someone who is healthy
and productive, connected to others through
activities, who makes an impact on the world and
other people? No, of course not. But it is less. I
started out believing otherwise but over the last four
years, I have had it pounded home to me.


In a family gathering, the sick kid may be in the
background, on the outskirts. He is the least able to
draw attention to himself, because he is weak and
easily tired. And he has, really, very little to say. He
has no stories about school or work to tell. He has
no achievements to share and be praised for.

His biggest achievement lies in the fact that he
managed to get out of bed and dressed, and now
is curled up in a corner of the couch, while the
people around him share their normal life.


Lucky is the sick person who has a champion in their
corner. And that champion is likely carrying a heavy
load. Because the sick one has a great need to be
heard. To be affirmed and acknowledged. To talk
about their symptoms, their fears and their hopes.


They fear that, like the vampire, they have no
reflection. They do not have an effect on the world
around them. They throw a pebble into the pool and
the ripples are so insubstantial that ... they fear that
they may be disappearing. And that they may
disappear without anyone even noticing.


That's why I'm here. Because I fell, a long time ago,
and I want to be heard.



Can I get a witness?

http://www.ncubator.ca
 
 
 
 

Update on Status of Ampligen

PHILADELPHIA, May 26, 2009 (GLOBE NEWSWIRE) -- Hemispherx Biopharma, Inc. (NYSE Amex:HEB) today announced that the U.S. Food and Drug administration ("FDA") has advised the company that it may require up to 1-2 additional weeks to take action beyond the scheduled Prescription Drug User Fee Act action date of May 25, 2009 on the New Drug Application for Ampligen(r) (Poly I Poly C12U), a selective TLR3 modulator, for the management of Chronic Fatigue Syndrome. Reason for the possible delay was attributed by the Agency to certain staff scheduling changes which might (or might not) delay the report. Accordingly the Company's development plan for Ampligen(r) continues as described in the recently filed 10Q and 10K, as the FDA did not request additional information from the Company at this time.

Monday, May 25, 2009

Liz's Comments to CDC

 
To the Chronic Fatigue Syndrome Advisory Committee:
 
It's quite clear that the CDC just keeps moving further and further away from studying the disease outbreaks in the mid-1980s from which 'CFS' was created. Biomarkers were identified by clinicians who saw patients during those outbreaks. Several physicians (including Dr. Paul Levine, a NIH epidemiologist at the time), noted that the disease conformed with previous outbreaks of Epidemic Neuromyasthenia, aka Myalgic Encephalomyelitis. There is a 50-year history of these types of outbreaks.
 
The biomarkers found in the patient population of the mid-1980s have been consistently ignored by the CDC. Private researchers are doing their best with limited funds to follow-up on those markers and find new ones. The CDC actually hinders their progress. The CDC's 'CFS' program is not meeting any of the public health goals of the CDC. I strongly urge that it be dismantled, and that the CDC limit its involvement to collection of laboratory data on viruses and other pathogens found in 'CFS' patients.
 
Recently, I wrote the following comment in response to the CDC's draft 5-year strategic 'CFS' research plan to the CDC:
 

Whatever happened to the CDC's National Enterovirus Surveillance
System (NESS)? From what I've been able to find through the internet, it was
running from 1961 through 2005. Through NESS, private laboratories voluntarily
reported findings of enteroviruses.
http://www.cdc.gov/mmwr/preview/mmwrhtml/ss5508a1.htm)
 
Given increased reports of enterovirus infection in people diagnosed with 'CFS',
why not resurrect this program?
 
And, considering the number of patients describing an "infectious-type" onset
who, after testing, are found to harbor a number of other viruses (see, for
example, http://vicd.info.research.html), why not expand the program to include
these?
 
Doing this is entirely in line with the CDC's historic role in monitoring emerging
diseases and is highly appropriate for the agency's future involvement in 'CFS'.
 
Since writing the CDC, I have found that a similar lab reporting system has existed since 2007, the National Respiratory and Enteric Virus Surveillance System (NREVSS). Unfortunately, only four viruses are currently monitored. (http://www.cdc.gov/surveillance/nrevss/index.html)
 
So I ask, respectfully, that the CFSAC recommend expansion of this surveillance system to include viruses and other pathogens identified by non-governmental researchers as associated with 'CFS'.
 
Sincerely,
Liz Willow

Tom's Written Testimony

[Word count: (excluding appendices and references for petition): 1259 words]

Tom Kindlon's Written Testimony: CFSAC Meeting May 2009


My name is Tom Kindlon.  I have CFS for over 20 years, having previously
been healthy (and very "sporty").  Unfortunately it took me over 5 years to
get diagnosed.  By the time I was diagnosed I was virtually bedbound and I
have only improved a small bit since then i.e. I have been housebound with
CFS for nearly 15 years.


Before my CFS deteriorated, I was studying Mathematical Sciences in Trinity
College Dublin (I got straight Firsts in the last year I did there - second
year exams) so have some knowledge of mathematical and statistical
methodologies.


I have been on the committee of the Irish ME/CFS Association (formerly the
Irish ME/CFS Support Group) since 1996 and have been Assistant Chairperson
since 1997.  Amongst other things, I have helped organise the Association's
response to thousands of enquiries in that period and have talked with
hundreds of people with the condition.  I have also been on Internet CFS
forums since 1995 and thus heard people from around their world describe
their illness and the effect it has had on them, as well as participating in
many interesting discussions.  I believe I have a lot of useful knowledge
and experience in the area.  In the last twelve months, I have had two
letters on the subject of CFS published in Pubmed-listed journals.


I am very concerned about the "empirical" definition (Reeves, 2005) the CDC
has adopted for CFS research in recent years.


I have posted numerous online comments to papers relating to the definition
but the CDC has never responded to any of the points.


Frustrated by the CDC's continued use of the definition, I set up a petition
on the issue on the 15th of April, 2009 (i.e. last month).  This petition is
summarized in 10 words as,
"CDC CFS Research should not involved the empirical definition (2005)"

http://www.ipetitions.com/petition/empirical_defn_and_CFS_research/index.htm
l

The petition

We call on the Centers for Disease Control and Prevention (CDC) to stop
using the "empirical" definition[1] (also known as the Reeves 2005
definition) to define Chronic Fatigue Syndrome (CFS) patients in CFS
research.

The CDC claim it is simply a way of operationalizing the Fukuda (1994)
definition[2]. However the prevalence rates suggest otherwise: the
"empirical" definition gives a prevalence rate of 2.54% of the adult
population[3] compared to 0.235% (95% confidence interval, 0.142%-0.327%)
and 0.422% (95% confidence interval, 0.29%-0.56%) when the Fukuda definition
was used in previous population studies in the US[4,5].

The definition lacks specificity. For example, one research study[6] found
that 38% of those with a diagnosis of a Major Depressive Disorder were
misclassified as having CFS using the empirical/Reeves definition.

References

[1] Reeves WC, Wagner D, Nisenbaum R, Jones JF, Gurbaxani B, Solomon L,
Papanicolaou DA, Unger ER, Vernon SD, Heim C. Chronic fatigue syndrome--a
clinically empirical approach to its definition and study. BMC Med. 2005 Dec
15;3:19. Link: http://www.biomedcentral.com/1741-7015/3/19

[2] Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. The
chronic fatigue syndrome; a comprehensive approach to its definition and
study. Ann Int Med 1994, 121:953-959.

[3] Reeves WC, Jones JF, Maloney E, Heim C, Hoaglin DC, Boneva RS, Morrissey
M, Devlin R. Prevalence of chronic fatigue syndrome in metropolitan, urban,
and rural Georgia. Popul Health Metr. 2007 Jun 8;5:5.

[4] Reyes M, Nisenbaum R, Hoaglin DC, Unger ER, Emmons C, Randall B, Stewart
JA, Abbey S, Jones JF, Gantz N, Minden S, Reeves WC: Prevalence and
incidence of chronic fatigue syndrome in Wichita, Kansas. Arch Int Med 2003,
163:1530-1536.

[5] Jason LA, Richman JA, Rademaker AW, Jordan KM, Plioplys AV, Taylor RR,
McCready W, Huang CF, Plioplys S. A community-based study of chronic fatigue
syndrome. Arch Intern Med. 1999 Oct 11;159(18):2129-37.

[6] Jason, LA, Najar N, Porter N, Reh C. Evaluating the Centers for Disease
Control's empirical chronic fatigue syndrome case definition. Journal of
Disability Policy Studies 2008, doi:10.1177/1044207308325995.

Further reading:
Problems with the New CDC CFS Prevalence Estimates
Leonard Jason, Ph.D., DePaul University
tinyurl.com/2qdgu4 i.e.
http://www.iacfsme.org/IssueswithCDCEmpiricalCaseDefinitionandPrev/tabid/105
/Default.aspx

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

I'm the first to admit that this isn't exactly the "catchiest" petition that
has ever been created.  One might think it would be lucky to get a few dozen
responses.


However already, in just over a month, 651 people have signed (at the time
of writing).  Many have left comments which can be read on the site:
http://www.ipetitions.com/petition/empirical_defn_and_CFS_research/index.htm
l
[Aside: other people have also left comments but for some reasons the
comments have not gone up].


I believe this shows the depth of feeling there is on this issue.


If one looks at the CFSAC's function, it is clear that the issues relating
to the definition are fairly central:


Function
The Committee shall advise and make recommendations to the Secretary,
through the Assistant Secretary for Health, on a broad range of topics
including: (1) the current state of knowledge and research about the
epidemiology and risk factors relating to chronic fatigue syndrome, and
identifying potential opportunities in these areas; (2) current and proposed
diagnosis and treatment methods for chronic fatigue syndrome; and (3)
development and implementation of programs to inform the public, health care
professionals, and the biomedical, academic and research communities about
chronic fatigue syndrome advances.


For example, as I pointed out, prevalence estimates from CDC research jumped
from 235 per 100,000 to 2540 per 100,000!  That is to say that nearly 11
times as many people are diagnosed with the new "definition" as the old
definition.  This is clearly relevant for point 1.  Who are these people?
Do they all really have the same illness?  I find it strange that, for
example, somebody can score 100 out of 100 on the physical functioning
subscale of the SF-36 (as well scoring the maximum on other subscales) but
if they score low on the Role Emotional Subscale, they can be classed as
being functionally impaired and hence satisfy that important part of the CFS
definition.  I believe this allows too many people who may not have CFS to
satisfy the criteria.  This concern has been demonstrated to be valid by the
study by Leonard Jason and colleagues (2008) which found that 38% of those
with Major Depressive Disorder were misclassified as having CFS using the
new definition.


One of the external reviewers for the CDC program highlighted this problem
when he was a reviewer for the Georgia prevalence study paper published in
2007.  Leonard Jason alluded to this in a piece he wrote that year:

'In Peter White's Dec. 3. 2006 review
(http://www.biomedcentral.com/imedia/1083914155124266_comment.pdf) of Reeves
et al.'s (2007) article, he states: The use of physical function, role
physical and social function sub-scales is consistent with the International
Study criteria for CFS, which states that the illness "results in
substantial reduction in previous levels of occupational, educational,
social, or personal activities." (Reeves et al, 2003). The use of role
emotional is not, since it specifically asks about change in function "as a
result of any emotional problems". And later White states that "In order to
make these important criteria consistent with other studies, I think the
authors need to re-analyse their data, omitting this sub-scale.'


Prof. White made other criticisms of the definition in his reviews - I'm
including as an appendix one of his reviews on the issue.


If one has a heterogeneous group of patients, it can mean that in
intervention trials, if "true" CFS patients only make up a tiny fraction of
the cohort, useful interventions could come up as showing no effect (or even
being detrimental); alternatively, interventions may come up as being useful
for CFS when in fact if one had only looked at those with "true" CFS, the
intervention may have made no difference or may even have been detrimental.
So you can see it is a serious issue.


Similarly with regard to risk factors for the illness, incorrect information
could be gathered.  For example, the CDC have now done not one but two
studies looking at the relationship between CFS and Childhood trauma.
However the results may have looked very different had a different
definition been used.  The same applies to biological testing and also the
search for biomarkers - having a very broad and inexact definition means
progress in that area may never occur.


I am unsure of the specifics of how the CFSAC acts but I hope it will be
able to do something on this issue.  My views are inline with what I have
read by Dr Leonard Jason on the issue so I would ask people to listen
carefully to whatever points he has to make on the issue.


I am appending comments I have posted on articles, which show my general
concerns.  These are generally referenced comments, which had to be reviewed
before they were posted (beside the CDC papers).  The method the CDC is
using to define Chronic Fatigue Syndrome can be a bit difficult to
understand so the comments may also help people understand what the
definition actually is.


Thank you for your time.


Tom Kindlon



~~~~~~~~~~~~~~~~~~~~~~~
Appendix 1: Comments I have been made on the "empirical definition" (Reeves,
2005) that have been "published" online beside CDC papers.
[Aside: I have not actually included all of the comments here]

[Internet version: In what I submitted, I included the comments (I didn't
send in the first comment from the first link).  However if I included them
here, it would make the E-mail very long.  It is also much easier to read
the comments at the site as they are formatted]

http://www.biomedcentral.com/1741-7015/3/19/comments
[AOL: <a
href="http://www.biomedcentral.com/1741-7015/3/19/comments">Here]

http://www.pophealthmetrics.com/content/3/1/8/comments
[AOL: <a
href="http://www.pophealthmetrics.com/content/3/1/8/comments">Here]

http://www.pophealthmetrics.com/content/5/1/5/comments
[AOL: <a
href="http://www.pophealthmetrics.com/content/5/1/5/comments">Here]


Appendix 2:
Prof. Peter White commenting on the empirical definition (Reeves, 2005)

http://www.biomedcentral.com/imedia/1083914155124266_comment.pdf
[AOL: <a
href="http://www.biomedcentral.com/imedia/1083914155124266_comment.pdf">Here
 
 

Sunday, May 24, 2009

More on the Petition

Thanks to Mary Schweitzer for giving this another plug.
Already 10 more have come in, bringing it to 978.

One person has already been confused by the link - Mary suggested I pointed
out on Co-Cure that the direct link is:

http://www.ipetitions.com/petition/empirical_defn_and_CFS_research
Or, if that breaks up, simply
http://CFSdefinitionpetition.notlong.com

Please replace the link in Mary's post if forwarding it on to others.

Thank you.

Tom Kindlon
 

Sign the Petition!

We're close! 

The petition to kill the new Reeves definition for CFS now has 968 signatures - that means just a few more will put us over the top into four digits for the CFSAC meeting on Wednesday.  32 more people.  We can do that!

Go sign it now if you haven't.  Ask your friends and families to sign it.

http://www.ipetitions.com/petition/empirical_defn_and_CFS_research/signatures-20.html

What the petition is about:  In 2005, with very little fanfare, the CDC researchers on CFS led by Bill Reeves changed the definition they had been using since 1994 (the Fukuda definition).  They have replaced it with a definition that greatly resembles the psychiatric one used in England. 

What would be the result of that?

Studies that show that we our physical malfunctions are due to "deconditioning" (from staying in bed "playing the sick role") and "cognitive behavior therapy" as the main treatment to offer, that would be the result.

Research on biomarkers and real treatment would be stifled by the CDC's insistence on trying them out with this group of patients, most of whom don't have anything resembling what we have.  The CDC would do a quick study and say - there's no evidence that biomarker is useful.

It would hold back research for even MORE decades - and worse, it could lead to cognitive behavior therapy, Prozac, and graded exercise as the only treatments for CFS that private insurance or Medicare would pay for. 

IT WOULD BE AN UNMITIGATED DISASTER.

This "new" definition, which was named in the best Orwellian bureaucrateze:  "empirical" (as if they had actually studied the symptoms that we have, which they did not), would be an unmitigated disaster for all patients with a diagnosis of CFS - and it wouldn't do much for patients with depression who would find themseles misdiagnosed as having CFS, either.

The reason we didn't hear much about the definition is that Reeves isn't selling the definition to the medical profession - he is selling the questionnaires, and suggesting that they would match the old CFS-Fukuda definition.

But research by Dr. L. Jason suggests otherwise:  when he tried the questionnaires out on patients from the Chicago study, he found that they omitted the sickest patients entirely.  Even worse, 30 percent (about 1/3) of the so-called "CFS" patients diagnosed using the Reeves questionaire did not have CFS-Fukuda, but did have major depression.  As Tom Kindlon has also noted, Reeves would only require one month of "fatigue" for the diagnosis - again, a shift in definition (from six months) that would make it easier for patients with other problems to be diagnosed as having CFS. 

The FIRST priority of the new CFSAC MUST BE to stop the distribution of those questionnaires, get rid of all references to the Reeves definition on the CDC's CFS website, and return to both the Fukuda definition and the Fukuda goal of defining subsets using objective measures and biomarkers.  (An apology would be nice but I'm not holding my breath.)

***  IF YOU HAVE BRAINFOG THIS IS ALL YOU NEED TO KNOW  ***

"CDC CFS research should not involve the empirical definition (2005)"

means

GET RID OF THE NEW REEVES DEFINITION AT CDC!

Go sign the petition.


http://www.ipetitions.com/petition/empirical_defn_and_CFS_research/signatures-20.html

Mary Schweitzer


----- Forwarded Message -----
From: "Tom Kindlon" <tomkindlon@oceanfree.net>
To: LocalME@yahoogroups.com
Sent: Sunday, May 24, 2009 9:08:51 AM GMT -05:00 US/Canada Eastern
Subject: [LocalME] RE: Tom Kindlon's written testimony to the CFSAC meeting, May 27-28, 2009

The l drops off the link to the petition in that E-mail.

A shorter link is:
http://CFSdefinitionpetition.notlong.com

Another Blog Worth Reading

http://niceguidelines.blogspot.com/2009/05/missed-diagnoses-myalgic.html