Wednesday, September 8, 2010

Wikipedia and CFS

People with the chronic fatigue syndrome are often told that there is no scientific evidence of a physical basis for their symptoms, and that they are just complaining excessively about the sort of normal tiredness that everyone gets. They may also be told that they are just lazy, or are exaggerating or faking symptoms to get sympathy, or that it's just nerves, or that they are just worriers, or that they are just depressed or mentally ill, and their symptoms may be dismissed by ridicule with the use of various insulting labels such as 'yuppie flu'.

In fact, those attitudes and labels generally cause as many problems for the patient as the ailment itself. They are also often told that all they have to do is ignore their symptoms or think positively and they will go away, but it is not such a simple problem or solution. What those patients and the general public may not be aware of is that there are many people who spend a lot of their time inventing those labels and insults, and hiding, or denying, or deleting all of the scientific evidence which has been accumulated over the past 100 years.While I was in Wikipedia I spent 12 months providing a description of the history of research into an ailment called Da Costa's syndrome. However, I had two critics who were systematically deleting all evidence about the scientific discoveries of physical causes, and, at the same time, were filling the page with as many psychiatric labels, and as much obscure jargon as possible. Regardless of any other consideration they were giving them undue weight by flooding the page with such a slant and deliberately understating everything else.

They were also trying to hide the link between Da Costa's syndrome and the modern label of the Chronic Fatigue Syndrome so that nobody bothers to look at the scientific evidence. This webpage provides descriptions of how they did that, and it should be interesting reading for patients who have the chronic fatigue syndrome and wonder why they have so much trouble getting the reality of their ailment taken seriously. The scientific evidence that I provided may enable genuine CFS patients to defend themselves against false accusations about the nature of their illness.

* * *

I have heard similar stories from other CFS activists.  One was certain that Wessely&Co had hired people to keep an eye on their pages, because as soon as anyone posted something negative (or proof that CFS is real), it would be removed immediately, at all hours of the day and night.




‘World Class Virus Hunter’ To Head Up the Latest XMRV Study

it may turn out that certain labs are simply more proficient than others at finding XMRV and related viruses. And he says he's open to whatever the outcome is, which is one reason why NIAID asked his group to run the study. "We have no horse in this race," he says.

Tuesday, September 7, 2010

WPI & Cerus Announce Inactivation of XMRV

9/7/10 6:20 PM
Whittemore Peterson Institute and Cerus Announce Inactivation of XMRV…
lood Cells by the INTERCEPT Blood System | EON: Enhanced Online News
Page 1 of 3
demonstrates robust
inactivation of these
viruses and holds
promise as a potential
proactive approach to
mitigating the risk of
virus transmission via

Whittemore Peterson Institute and Cerus Announce Inactivation of XMRV 
in Platelets
and Red Blood Cells by the INTERCEPT Blood System
- Data Confirming Inactivation of XMRV and MLV-Related Viruses is 
Presented at 1st International XMRV
Workshop -
September 07, 2010 10:03 AM Eastern Daylight Time
RENO, Nev. & CONCORD, Calif.--(EON: Enhanced Online News)--The 
Whittemore Peterson Institute for Neuro-Immune
Disease (WPI) and Cerus Corporation (NASDAQ:CERS) presented data at 
today's NIH-sponsored 1st International
Workshop on XMRV which demonstrates the efficacy of Cerus' INTERCEPT 
Blood System to inactivate XMRV and other
MLV-related viruses in donated blood. Recent scientific studies have 
detected these human retroviruses in up to seven
percent of healthy blood donor samples, indicating approximately 20 
million people in the United States could
unknowingly be carrying the infection. XMRV and MLV-related viruses 
have been linked to prostate cancer and myalgic
encephalomyelitis/chronic fatigue syndrome (ME/CFS).
"The genetic variability of XMRV and MLV-related viruses will make 
development of
screening assays for the blood supply challenging," said Dr. Judy 
Mikovits, director of
research at WPI and lead author of the study. "The INTERCEPT 
technology demonstrates
robust inactivation of these viruses and holds promise as a potential 
proactive approach
to mitigating the risk of XMLV/MLV-related virus transmission via 
Co-author Dr. Lily Lin, vice president of global scientific affairs 
for Cerus, added, "The INTERCEPT system inactivates pathogens by crosslinking their DNA or RNA, which blocks their ability to replicate and prevents transmission of the infection. 
This mechanism of
action is designed to provide prospective protection against emerging 
threats like XMRV
and its genetic variants."
In a paper published online on August 23, 2010 in the journal 
Proceedings of the
National Academy of Sciences (PNAS), scientists from the National 
Institutes of Health
and U.S. Food and Drug Agency detected the presence of a genetically 
diverse group of
MLV-related viruses in 86 percent of CFS patient samples and in 6.8 
percent of samples
from healthy blood donors, leading to new concerns about the 
possibility of transfusion transmission. The PNAS study
results are consistent with data from a 2009 study published in 
Science, which detected XMRV in 67 percent of CFS
patients and 3.7 percent of healthy controls.
In the study conducted by WPI and Cerus, red blood cell and platelet 
components were contaminated with a natural
isolate of XMRV and MLV-related viruses from an ME/CFS patient. 
INTERCEPT-treated and control samples were
evaluated in a validated virus culture test, which allows sensitive 
detection of viral particles that are capable of
reproducing. No viable virus was detected following treatment, 
indicating the INTERCEPT Blood System is capable of
inactivating high levels (>4 logs) of the virus.
The INTERCEPT systems for platelets and plasma are used by over 60 
blood centers in Europe, Russia and the Middle
East. The INTERCEPT red cell system is in clinical development. The 
INTERCEPT Blood System is not yet approved for use
in the United States.
The Whittemore Peterson Institute for Neuro Immune Disease exists to 
bring discovery, knowledge, and effective
treatments to patients with illnesses that are caused by acquired 
dysregulation of both the immune system and the
nervous system, often resulting in lifelong disease and disability. 
The Whittemore Peterson Institute is the first institute in
the world dedicated to neuro-immune diseases, integrating patient 
treatment, basic and clinical research and medical
9/7/10 6:20 PM
Whittemore Peterson Institute and Cerus Announce Inactivation of XMRV…
lood Cells by the INTERCEPT Blood System | EON: Enhanced Online News
Page 2 of 3
Cerus Corporation is a biomedical products company focused on 
commercializing the INTERCEPT Blood System to
enhance blood safety. The INTERCEPT system is designed to reduce the 
risk of transfusion-transmitted diseases by
inactivating a broad range of pathogens such as viruses, bacteria and 
parasites that may be present in donated blood.
The nucleic acid targeting mechanism of action allows INTERCEPT 
treatment to inactivate both established transfusion
threats, such as hepatitis, HIV, West Nile virus and bacteria, as well 
as emerging pathogens such as influenza, malaria
and dengue. Cerus currently markets and sells the INTERCEPT Blood 
System for both platelets and plasma in Europe,
Russia, the Middle East and selected countries in other regions around 
the world. The INTERCEPT red blood cell system
is in clinical development. Visit  for more 
INTERCEPT and INTERCEPT Blood System are trademarks of Cerus 
1. Lo SC, et al. (2010) Detection of MLV-related virus gene sequences 
in blood of patients with chronic fatigue syndrome
and healthy blood donors. Proceedings of the National Academy of 
Sciences, published online before print August 23,
2. Lombardi VC, et al. (2009) Detection of an infectious retrovirus, 
XMRV, in blood cells of patients with chronic fatigue
syndrome. Science 326:585–589.
3. Mikovits J, et al. (2010) Inactivation of XMRV and MLV-related 
viruses in platelet and RBC components prepared with
the INTERCEPT Blood System. Presented at the 1st International 
Workshop on XMRV, September 7-8, 2010 (Bethesda,
R&R Partners for
Whittemore Peterson Institute
Amy Riley, 775-287-7930
Cerus Corporation
Lainie Corten, 925-288-6319
Director, Global Communications & Marketing
View All Releases from This Organization
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9/7/10 6:20 PM
Whittemore Peterson Institute and Cerus Announce Inactivation of XMRV…
lood Cells by the INTERCEPT Blood System | EON: Enhanced Online News
Page 3 of 3

Mystery disease specialist snubbed by WA doctors

Mystery disease specialist snubbed by WA doctors
Katherine Fenech
September 7, 2010 - 7:50AM

West Australian chronic fatigue syndrome sufferers are disappointed
that only six Perth doctors had indicated they would attend a free
seminar by a world-renowned expert.

Little is known about myalgic encephalomyelitis, better known as
chronic fatigue syndrome, even among doctors. Statistics are sketchy,
with various studies finding there were anywhere between 100,000 and
250,000 Australians suffering from a form of chronic fatigue.

The disease was dragged into the spotlight earlier this year by WA
sufferer Theda Myint, who has had such a severe form of ME/CFS for the
past 10 years that she is bedridden, often able to do nothing but lie
in a dark, quiet room.

Her mother, Carol Adams, said Ms Myint's appeals for help from doctors
or hospitals were often met with derisive remarks or mockery. She said
many doctors have told her daughter the illness was in her head and to
"get up and go have a coffee".

"Half the doctors don't believe it's a real illness, they believe that
it's psychiatric, even though it's proven not to be, they still
believe it because they don't know how to treat it," Ms Adams said.

"You get laughed at in the hospitals, doctors look at me directly and
tell me it's my fault because I look after her."

Ms Adams said other doctors were at a loss to help because so little
information on ME/CFS treatment was available and research money was

To combat that knowledge gap the WA ME/CFS Society support group
invited Canadian doctor Byron Hyde to the state to speak on treatment
options and his research into the disease.

Dr Hyde founded the Nightingale Research Foundation, dedicated to
understanding and developing treatments for ME/CFS, more than 20 years
ago and has written numerous books on it.

But the society's president Blake Graham said despite flyers and a
newspaper advertisement just six doctors and five health
professionals, like pharmacists, had indicated they would attend.

Health Minister Kim Hames was invited but said he would not be able to attend.

"Unfortunately I have a conflicting appointment that evening however I
have written to Theda's partner, Blake Graham, expressing my apologies
and also wishing the best for Theda's ongoing treatment," Dr Hames

"I would certainly encourage any doctor with a special interest in CFS
to consider attending the presentation by Dr Hyde who has an extensive
personal and research experience of working with patients suffering
from this challenging condition."

Mr Graham said the abysmal list of attendees was quite disappointing
given the calibre of the speaker and the need for doctors to get a
better understanding of the disease.

"To me it's really mind-boggling that we have quite literally one of
the world experts coming and lecturing for free and right on people's
door step and there has been so little interest really," Mr Graham

"It's very disappointing because Dr Hyde is very technical and
scientific in nature and his work is really oriented to doctors and
not to patients."

A Health Department spokeswoman said the number of doctors and health
professionals under the department was so large that it would be
impossible to know if any would attend the seminar.

Dr Hyde's health professionals' seminar runs on September 11 from
9am-1pm at 11 Aberdare Road, Nedlands.

* * *
There you have it -- proof that doctors are closed-minded when it comes to CFS. 
To some extent, I can understand the ego thing that they don't want to learn about it from patients, but they will not even go to a lecture by another MD that would cause them to have to acknowledge that they've been in error all these years in assuming that it's all in our heads. 
Just as one of our experts noted that CDC couldn't replicate DeFreitas' virus because "they don't want to find anything", neither do these doctors want to find anything that would cause them to have to change their opinion.

Monday, September 6, 2010

3 articles on Post Exertional Malaise

[The latter two in particular have a lot of references from research
studies. Tom]

1)      Unraveling Post-exertional Malaise

By Jennifer M. Spotila, J.D.

"A 2009 survey of more than 1,000 patients conducted by the CFIDS
Association of America found that post-exertional malaise (PEM)1 is one
of the most common and most severe symptoms reported by individuals with
chronic fatigue syndrome (CFS)2. This article, the first in a series,
examines the definition of PEM and how CFS patients experience it. PEM
is also referred to as post-exertional relapse and post-exertional

2)      Post-Exertional Malaise: Perception and Reality

By Jennifer M. Spotila, J.D.

"Dr. Anthony Komaroff of Harvard University recently described
post-exertional malaise (PEM) as "an illness within an illness."
This article, the second in a series, examines objective evidence of PEM
and how it differs from fatigue in other illnesses."

3)       Post-Exertional Malaise: Cause and Effect

By Jennifer M. Spotila, J.D.

"Post-exertional malaise (PEM) is one symptom of chronic fatigue
syndrome (CFS), but is itself more complex than a single symptom.
Patients experience fatigue, pain, cognitive difficulties, sore throat,
and/or swollen lymph nodes after previously tolerated physical or mental
activity. These symptoms may appear immediately after the activity or
after a period of delay, and may last days or weeks. This article, the
third in a series, examines what mechanisms may cause PEM."

CoQ10, L-carnitine and Ribose

*please repost* *permission to repost* *please repost*

A new HFME paper is available: CoQ10 (ubiquinol), L carnitine, D ribose and

This paper looks at questions such as: Why are these three supplements (plus
magnesium) so important for heart health? What is the appropriate dosage of
each of these supplements? How well tolerated are these supplements in M.E.?
Which drugs dangerously deplete the body of CoQ10?

This paper/page also includes a summarised practical paper for patients.
(Severely affected patients may prefer to read just this summarised paper.)

(As you can see, the focus on nutritional, herbal and orthomolecular
medicine continues this month, as it will for several more months, before
the more 'usual' service is once more resumed. As I'm sure many of you will
understand, it is far easier to write on a single topic exclusively for a
time, with M.E.)


CoQ10 (ubiquinol), L carnitine, D ribose and M.E. by Jodi Bassett July 2010

An excerpt:

Metabolic cardiologist Dr Stephen T. Sinatra considers coenzyme Q10 (CoQ10),
L carnitine, D ribose and magnesium the 'awesome foursome' of cardiovascular

Dr Sinatra explains that while 1 + 1 will always equal 2 in mathematics, in
metabolic cardiology and nutritional medicine, when you are talking about
substances that are synergistic with each other such as the 'awesome
foursome', 1 + 1 might equal 5 or even 10. In other words, the benefits of
taking more than one of these substances at a time may far outweigh the
benefits seen from taking any of them alone.

The heart and the brain are especially rich in mitochondria. This makes them
especially vulnerable to mitochondrial damage and the resulting decrease in
energy output. Both the brain and the heart (with its extraordinary non-stop
work) need an enormous amount of energy.

Dr Sinatra explains that,

It's all about ATP (adenosine triphosphate). Hearts, skeletal muscles and
every other tissue in our bodies have an absolute need for ATP as their
primary energy currency. Cells and tissues will cease to function if they
are not provided with a constant and stable supply of energy. Both the total
pool of energy substrates (ATP) in the cell and the cell's ability to
recycle these compounds are fundamental to healthy energy metabolism and
cell function.

When hearts are stressed by disease, energy substrates, called purines, wash
out of the cell and the total pool of cellular energy becomes severely
depleted. Disease also disrupts the heart's ability to recycle its remaining
energy through the oxidative phosphorylation mechanisms. The combination of
energy pool depletion and metabolic dysfunction contributes to the severity
of the disease and impacts the physiological health of the heart. The same
is true for skeletal muscles that are stressed through disease or
high-intensity exercise.

CoQ10 and L carnitine are major players in the energy recycling metabolic
pathways. D ribose is the only compound used by the body to replenish
depleted energy stores and rebuild energy pools. Magnesium is a vital
mineral used by the enzymes that make energy synthesis and recycling

Or as Dr Sinatra explains; D ribose fills the tank, CoQ10 and L carnitine
helps convert this fuel to energy (helps the engine run properly) and
magnesium is the glue that holds it all together.

Coenzyme Q10

CoQ10 is an enzyme that occurs naturally in the mitochondria of every cell
in your body. It plays a key part in metabolizing energy from food. CoQ10
was first isolated in 1957. Since then, scientists have studied its effects
on a wide variety of illnesses and conditions.

CoQ10 plays an important role in stabilising cell membranes.

CoQ10 is essential in directly supporting ATP recycling in the mitochondria
of the cells. This is especially important for tissues that use a lot of
energy, such as the heart and the brain.

Dr Sinatra explains that CoQ10 helps any type of cardiomyopathy, congestive
or even hypertropic. It impacts on both systolic and diastolic dysfunction,
improving quality of life...

(excerpt ends)

To read on or view a reference list for this paper, see:


Important notes on using the HFME's treatment information - Summary. Please
read this information before starting any new treatment

. For the best results, an individualised nutrition and supplementation plan
should be created in partnership with a qualified holistic practitioner.
Ideally, this practitioner would also be the patient's doctor. The
information on HFME should be used only as an additional source of
information, as a starting point for the patient's own research efforts and
for discussions with their own practitioner.

. The best results are achieved by following a comprehensive nutrition and
supplementation plan, rather than only taking a small number of supplements.

. As much reading as possible should be done before starting any new
treatment   Read all of the information about the treatment available on
HFME in full and, if possible, some of the items in the relevant extra
recommended reading sections as well. Read as much and as widely as you can.
     The information on general M.E. treatment on the HFME website is best
read together with one or more (or all) of the following books: The
Vita-Nutrient Solution, Orthomolecular Medicine for Everyone: Megavitamin
Therapeutics for Families and Physicians, Fire your Doctor: How to be
Independently Healthy and The Optimum Nutrition Bible (and also perhaps one
of the books on vitamin C). Borrowing or buying these books and combining
the information in them with the information on the HFME site (or book) is
highly recommended.

. Before starting any new treatment the patient should: (a) make sure they
are aware of all the cautions relating to using it safely, such as whether
it must be taken with food or not, with other related supplements or in
divided doses, (b) check that it is compatible with all current medications
(and supplements) being taken, (c) check that it is safe for any other
conditions they may have (such as diabetes or kidney problems), and (d)
discuss it with their doctor or qualified holistic practitioner (if at all

. Any new supplement should be started at a low dose and the dose should
only be raised gradually.  If you are sensitive to supplements, start at
minuscule dose: perhaps 1/10th of the normal dose or less, or a few crumbs
of a crushed tablet taken once a week. Try only one new treatment at a time,
if possible. (Simultaneously starting 3 or 4 or more of the treatments
listed in 'A quick start guide to treating and improving M.E.' may cause

. It should not be assumed that 'natural' means safe. Vitamins, minerals,
enzymes and herbs etc. taken at medicinal doses can have drug-like effects
and can potentially cause significant relapse or worsening of some symptoms.
Reading as much as you can about each treatment and starting very slowly are
important with EVERY treatment.

. Taking supplements is not a replacement for eating well, getting enough
rest and avoiding overexertion, having good sleep habits, limiting emotional
stress and avoiding toxic chemical exposures. There is little point in
giving the body the substances it needs to try to heal itself while at the
same time causing more damage in other ways.

. The treatments mentioned here are certainly not miracle cures for
long-term M.E., and no promises can be made about outcomes.
     Promises of easy cures in many books and articles should be treated
with the contempt that they deserve! Many of these contemptible false
promises are made on the false assumption that 'CFS' means M.E., made in
many general books and articles on health, nutrition and vitamins.  Some
diseases misdiagnosed as 'CFS' may well be easily treated and cured, but
this has no relevance to M.E. patients any more than it does to MS patients.
     Particular treatments will not necessarily give particular outcomes.
The aim here is to give your body its best possible chance to at least
partly heal itself by giving it some of the basic tools and materials it
needs to heal itself. No specific level of improvement can or should be
guaranteed, with any treatment.

. HFME's collation of information on M.E. treatment is and will always be a
work in progress, as with any guide to treatment. M.E. patients and M.E.
experts are always invited and encouraged to submit any additional
information or comments they may have. It is recommended that readers
periodically check the HFME site for updates.

Disclaimer: HFME does not dispense medical advice or recommend treatment,
and assumes no responsibility for treatments undertaken by visitors to the
site. It is a resource providing information for education, research and
advocacy only. In no way does reading this site replace the need for an
evaluation of your entire health history from a physician. Please consult
your own health-care provider regarding any medical issues relating to the
diagnosis or treatment of any medical condition.


The full paper (properly formatted) is available here:

If you would like to link to this page, please do so using the link above
only. If you'd like to download a Word or PDF version of this text, please
click on the above link or use the links below:

Best wishes,
Jodi Bassett
The Hummingbirds' Foundation
for Myalgic Encephalomyelitis:

"Both carnitine and CoQ10 promote energy to cardiac muscle cells. It is
important to note that this action is physiological and is not similar to
the pharmacological effects of drugs that affect the heart rate and
contractibility of the heart." Dr Sinatra in 'The Sinatra Solution'

WPI: Of Mice and Medicine

Source: Reno Gazette Journal
Date:   July 11, 2010
Author: Lenita Powers

Of mice and molecular medicine

When the University of Nevada, Reno's $77 million Center for
Molecular Medicine opens in September, it will house 40,000 mice
and state-of-the-art laboratories to conduct research into possible
cures for muscular dystrophy, breast cancer, stroke, herpes and
Chronic Fatigue Syndrome and other illnesses.

The 116,500-square-feet structure will allow the university to
expand its research and generate more federal grants, said Thomas
Kozel, a professor of microbiology and immunology and the center's
project manager for the School of Medicine. "When we first started
planning this facility six or seven years ago, the basic problem
was space," he said. "We were absolutely built out as far as what
we could do in research. It will expand our ability to work on
multiple projects at the same time. It also expands our containment
facilities and our ability to work with human samples."

A significant part of the cost of the new center was the construction
of a vivarium, a building to house mice, Kozel said. "But not just
any mice," he said. "They will be transgenic mice. We can genetically
alter these mice, for example, to knock out a gene for a particular
protein of choice or to knock in a gene, and then we can see how that
particular protein functions."

The transgenic mice are inbred strains that scientists can use to
put in or remove genes to recreate any of the genetic diseases, such
as muscular dystrophy, for research, he said. The new center also
will allow faculty to use the team concept now favored at modern
medical research facilities, Kozel said. "Laboratory design has
changed, not just here but around the world," he said. "The buildings
they are building now are built for research teams, so in this new
building there will be larger teams of four or five faculty and a
group of 30 investigators who will work together. Rather than
departmentalizing, we will work together and share resources, share
thoughts, share students and share technicians," Kozel said. "When
it is fully populated, I anticipate we will have from 25 to 35
faculty and each of those faculty will lead a research team of five
to eight individuals so you will have around 150 to 200 people."

University President Milt Glick said most of those positions will be
funded by research grants. Most of money to build the center --
about $60 million -- came from indirect costs from grants awarded
to UNR faculty, Glick said. "It came from our faculty, competing at
the top of their game for these grants," he said. "Our sponsored
research and public service bring in about $100 million a year,
which is about half of all the sponsored research that goes on in

And with the promise of a state-of-the-art facility and expanded
research, the center is expected to attract new scientists to the
campus who will bring their projects and grants with them, Glick

UNR scientists will be working at times with researchers from the
Whittemore Peterson Institute for Neuro-Immune Disease, which will
be housed in the center. Through their foundation, Harvey and
Annette Whittemore of Reno pledged $5 million toward the
construction of the center.

The Whittemore Peterson Institute has laboratory space and conducts
research at UNR but would move into the top two floors of the new
center's east wing and begin providing clinical care to patients
with chronic fatigue syndrome and fribromyalgia, a condition
characterized by chronic widespread pain and a heightened and
painful response to pressure that affects mostly women.

Annette Whittemore, founder and president of the institute, said
its mission is to develop a knowledge base that will lead to
diagnostics and the effective treatment of Chronic Fatigue Syndrome
and similar neuro-immune diseases. Last year, Whittemore Peterson
institute researchers discovered a new infectious human retrovirus,
XMRV, that may cause or at least contribute to Chronic Fatigue
Syndrome. "Our vision is that, as we show the science that's
already there, we could look for additional scientific knowledge
on the campus," she said. "The partnership and the integration has
been phenomenal, and we think we can bring back to the university
knowledge and equipment," Whittemore said. "We also hope we can
bring new researchers and medical expertise so we can help educate
(UNR's) medical students and provide a home for them to come
through, and that they can in turn help our patients as well."

(c) 2010 Reno Gazette Journal

Connect to Clinical Trials

The National Institutes of Health (NIH) has launched,
which seeks to connect people who want to participate in clinical trials
with researchers conducting the studies. The user-friendly site will cover
an array of diseases.  Both researchers and patients can sign up. Whether or
not they will include CFS is unknown.
For more information:  

Score 100/100 on the SF-36 PF subscale and still satisfy empiric criteria forCFS

In the Switzer et al (2010) study on XMRV and CFS, one or more CFS patients scored 100 (out of 100) on the SF-36 physical functioning scale.

That means they answered "No, not limited at all", to all of the questions below (the questions below are the questions for the physical functioning subscale: basically "Yes, Limited A Lot" gets you 0 points for that question; "Yes, Limited A Little" gets you 5 and "No, not limited at all" gets you 10 so scale is 0-100).

Extract from Switzer et al (2010) study paper:
SF-36 physical functioning 65.5, range 10-100
This average score is higher than you generally see in CFS studies.

Leonard Jason previously noted this problem in:
5. 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

Leonard Jason et al gave an example of a woman with major depressive disorder who didn't have CFS satisfying the empiric criteria despite having a SF-36 PF score of 100.  I mentioned this in my letter in Psychosomatic Medicine (which I can't post for copyright reasons).


SF-36 physical functioning questions

4. The following items are about activities you might do during a typical day. Does your health now limit you in these activities? If so, how much?
(check one on each line) ACTIVITIES

Yes, Limited A Lot

Yes, Limited A Little

No, Not Limited At All

a. Vigorous activities, such as running, lifting heavy objects, participating in strenuous sports
􀂆 1
􀂆 3
􀂆 5

b. Moderate activities, such as moving a table, pushing a vacuum cleaner, bowling, or playing golf
􀂆 1
􀂆 3
􀂆 5

c. Lifting or carrying groceries
􀂆 1
􀂆 3
􀂆 5

d. Climbing several flights of stairs
􀂆 1
􀂆 3
􀂆 5

e. Climbing one flight of stairs
􀂆 1
􀂆 3
􀂆 5

f. Bending, kneeling, or stooping
􀂆 1
􀂆 3
􀂆 5

g. Walking more than a mile
􀂆 1
􀂆 3
􀂆 5

h. Walking several blocks
􀂆 1
􀂆 3
􀂆 5

i. Walking one block
􀂆 1
􀂆 3
􀂆 5

j. Bathing or dressing yourself
􀂆 1
􀂆 3
􀂆 5

The REAL SuperCrip

You want to talk SuperCrip?
Take away the devoted wife and kids whose care allows this wheelchair-bound guy to do his own thing and set up his own foundation and go on TV.  Let's see how much he accomplishes without help.
Because for most disabled people, that's how it works.  You go it alone.  Your spouse runs off with a healthy person leaving you to cope as best you can.  Either you didn't have kids because you got sick before you had them, or you had kids but they're too young to be much help when Dad gets tired of playing nursemaid and leaves for a woman who imposes less responsibility on him.
You think it's hard for a healthy woman to juggle work and household chores?  Try doing it with a disability!  The experts tell you to "delegate chores".  How do I do that when no one else lives here? Asking friends for help doesn't mean you're going to get it – they have busy lives, too.  My friends all have either full-time jobs or full-time caregiver responsibilities at home ... they barely have time to clean their own houses, much less come over to help me. 
The only cleaning agency that actually cleans costs $200 a visit ... I can't afford to pay that much every week!  So I muddle through the best I can, trashing my bad back doing things I know I shouldn't, trying to avoid exhausting myself by using pacing, having to make choices whether to stop in the middle to rest or to violate the rules of pacing by pushing through till I'm done.  Sometimes the decision is made for me – I get dizzy enough that I have to stop and lie down.
In my mind, the real SuperCrip is the one who never gets noticed because she's quietly struggling through life with no money, no help, and insults flung by people who don't understand that she's not merely lazy or depressed.  Some years ago, I got my first abnormal blood test result, but even that didn't appease the critics.
The real SuperCrip is not the one who was able to write a book while someone else did the chores and cooked her dinner.  The real SuperCrip is the one who would like to write a book, and thinks about it while she's doing her own chores and cooking her own dinner.
I've been on TV and had my picture in the paper, but not for reasons related to my disability, which was never mentioned.  (It was mentioned by me, but not by the journalist who summarized my statements.)
I'd like to do more to publicize CFS/fibro, but if I'm soliciting public appearances, I'm not home doing the chores and earning a living, and I don't have the energy to come home from a speech and do everything that needs doing.  Blogging and letter-writing can be done if I have energy left after doing the more important stuff and can be done horizontal, using less of my precious energy resources.  
Unfortunately, the picture the world has of SuperCrip isn't the realistic one, the average disabled person who's poor and alone.  The pictures they see are the ones the media loves: the husband with the wife who has to do everything for him, even wipe his nose; the wife who wrote a book about living with CFS and tells us how her daughter lovingly cooks organic chicken broth from scratch while her husband carries her from the bed to the bath.  Therefore, every woman with CFS has only to lie in bed while nutritious food miraculously appears and her cadre of servants and handmaidens tends to her every need without her needing to move a muscle, reinforcing the stereotype that we're spoiled, petted, lazy women who use a fake illness to manipulate people into doing our chores for us.
The media never show the woman who lives in squalor because she barely manages to rustle up food, without the energy to deal with the cobwebs and dust bunnies the size of elephants and mopping the floor.  The woman whose house is a mess because bending over to pick up something she's dropped causes her to pass out.  The man who's living in the gutter because his meager disability check wasn't enough to pay rent.  We're the real face of disability, the one that's too ugly for the media. 
And we're the real SuperCrips because we're doing as much as we can – often more than we should – without help, without recognition, on our own.
Stand up (if you can) and give yourselves a round of applause.  Whether the rest of the world ever acknowledges it or not, you deserve a lot of praise for accomplishing as much as you do against insurmountable odds.


Super Cripdom

"He compares living with polio to running a marathon. Long distance runners "force their bodies to a level of strength and endurance far beyond their natural capacities .... Our muscles are paralyzed or partially paralyzed. Our muscular systems are able to function at only a percentage of normal strength. They have but a fraction of normal endurance. Nevertheless we have taught them to perform marvellous feats. With exercise, ingenuity ... we have found ways to make our muscles perform what for the able-bodied are the ordinary, easy tasks of daily living. And, often enough, we have found ways to make the way we do these tasks look normal, even easy." Age, Hugh says "comes earlier and with greater impact to the polio. What is no more than annoying to the aging able-bodied can be totally disabling to the polio." He warns, don't waste your time being a Super Crip. "Since I bombed out of Super Cripdom, I have continued to have an exciting, reasonably productive life. The difference is that I now enjoy it."
* * *
Comparing notes with a fellow support group member who also worked until she literally dropped... the reality is that we were either working or resting up to be able to work the next day.  It became so second nature that we never realized that we had no Quality of Life until we were no longer able to work and lost our jobs.
Suddenly, I have a Life!  If I want to go somewhere on Sunday afternoon, I don't have to consider whether this will keep me from going to work on Monday.  If I want to use all my energy going for a walk, my only concern is whether I have enough in reserve to get up the stairs into the house, not if I'm going to spend the rest of the week on the couch.  I can enjoy myself without always having one eye on the clock and half my mind on "what will this do to my ability to make it through the week at work?", because that's no longer a consideration.  I work at home, and I'm my own boss -- if I don't think I can handle an assignment, I can turn it down and spend the day resting.  If I need a two-hour nap to get through the day because I over-extended, I can do that -- no boss is waiting to fire me for sleeping on the job.
I DO perform marvelous feats: I cook, I do laundry, I work, I get myself in and out of the bathtub, some of which my fellow patients can't do at all.  Gee, I'm sorry that I can't run a marathon (didn't do that when I was healthy, either) or any of the other things you see SuperCrips doing in the media, but my fellow patients are pretty damned impressed when they hear what I was able to do that they can't. 
And if what I am able to push myself to do isn't good enough for you because you see SuperCrips doing more, <bleep> you.  My ultimate goal is to survive, not win someone else's approval.

Sunday, September 5, 2010

Disability in Media - Lesson 6: The 'Super-Crip' Phenomenon

It's that time of year again -- the Jerry Lewis Telethon -- and the portrayal of disabled people as heroes with doting spouses and dedicated doctors.  Not to mention touting that MDA can afford to provide medical care and assistive devices to patients at no cost (which most health charities cannot, but people don't realize that not every disease charity has that much money to spare).
Soooooooo, here's a website worth reading, and quoting!
  • Identify several examples of the "super crip" phenomenon, in different forms of the media (advertisements, television shows, movies, etc)
  • Discuss where this particular stereotype may have originated and link it to the historical context provided in previous lessons.
  • Understand how this particular stereotype perpetuates certain social problems faced by the disability community, and identify some of those social problems.
  • Recognize the role that talk shows in particular have played in perpetuating this stereotype and compare it to the freak shows of the 1800's.
  • Understand how both the "disability as pity" and "disability as super crip" stereotypes work to "other" persons with disabilities.
  • It makes audiences feel better about the condition of persons with a disability without having to accommodate them, reinforcing the notion that disability can be overcome if only the person would "try hard enough"

  • * * *
    I get this a lot. 
    They'll cite someone who is lucky enough to have an adoring husband and suggest that if she can have a helpful spouse, obviously the only reason I don't have one is that I'm a nasty person.  Not because 3/4 of marriages affected by chronic health problems fall apart and 90% if it's the wife who's sick.  Not because very few men want to be saddled with a disabled wife; yes, there are a few out there, and God bless them, but I haven't come across one yet because they ARE few and far between.
    They'll cite someone who is lucky enough to have a job and come right out to say that if I haven't found one, it's not because I haven't been lucky enough to find an open-minded employer who doesn't discriminate, but that I haven't tried hard enough.  In fact, I applied for a job with the agency that helps the disabled find jobs, and they wouldn't hire me, wishing me good luck in finding someone who would.
    Or some disabled woman who defied the odds to have a baby.  Well, some of us are smart enough to take our doctor's advice when he says "it could kill you".  I'm not selfish -- if I were selfish, I would've taken the risk of leaving my husband with either a bedridden wife or a motherless child.  Instead, I chose to keep working as long as possible, contributing to the family finances instead of being a drain on them.
    The media do most disabled people a great disservice by highlighting the 1% who have husbands, jobs and successful pregnancies.  The vast majority of us lack one or more of those because of discrimination and people who focus on what we can't do, rather than on what we can.
    My wish this telethon weekend is that the media would incorporate statistics into these stories, making it clear how rare these exceptional people are.  "Although most disabled people are unemployed, not by choice..."  Tell the truth, "the only company willing to hire him was his brother's business".  "90% of husbands flee the responsibility of a disabled wife".  "John, a sports junkie, was willing to marry Jane, a disabled woman, when he learned that the government would pay him to care for her, meaning he could watch ESPN all day, which he couldn't with a real job."  That sort of thing. 
    Don't make the unemployed and single among us appear to be the aberration.  Make it clear that the vast majority of us either can't find a husband, or the one we had left, due to the disability.  Make it clear that some of us have put in hundreds or thousands of applications over decades without being hired.  And that very few of us live in large suburban homes, wheelchair-accessible, with large sunny backyards ... most disabled people live in squalid apartments in the ghetto, the only place they can afford on Disability checks, or off the charity of a relative with a spare bedroom.
    THAT would do more for disabled people than perpetuating the SuperCrip notion that all I have to do is smile and I'll catch a man who can afford my medical bills, get a job of my own, and give birth to 2.5 perfectly healthy children who will not resent that they have to spend their childhood caring for their mother and doing chores that Mommy can't.



    NIH Director to Open XMRV Conference

    I suppose it's prudent to wait to declare victory after the 
    conference, but I reckon we've won. There is still a Flat Earth 
    Society. "The times, they are a changing."

    Jean Harrison

    Director of NIH to open XMRV Conference

    by XMRV Global Action on Saturday, 04 September 2010 at 22:03

    Even bigger news on the XMRV/Murine Leukemia Related Virus front:  
    Francis Collins, Director of the National Institutes of Health 
    (overseeing an annual budget of ~$31+ Billion) will be giving the 
    opening workshop at the 1st International XMRV conference.  He will be 
    joined by Stuart LeGrice, head of the Center of Excellence in HIV/AIDS 
    and cancer virology at the National Cancer Institutes, who was 
    famously quoted in the Wall St. Journal last October:

    "NCI is responding (to XMRV) like it did in the early days of HIV"

    As patient bloggers have been commenting, this suggests the NIH and 
    indeed NCI are taking XMRV/MLV very seriously indeed.  With Francis 
    Collins' very visible participation at this conference, the 
    speculation (emphasis on speculation) is that one or both of the 
    following might have happened:
        •  XMRV/MLV's have been proven (behind the scenes) to cause 
    aggressive familial prostate cancer and/or ME/CFS/Mantle Cell 
    Lymphoma, and possibly other neuro-immune disorders
        •  XMRV/MLV's have been confirmed to be transmissible in blood products
    Given the early prevalence rates in healthy blood donors of 3-7% cited 
    by Dr Harvey Alter (discoverer of the Hep-C virus), this ultra-high-
    level attention is perhaps not surprising. Plus there is the element of potential scandal, since ME/CFS patients have been complaining of profound viral symptoms (and dropping dead from viral cardiomyopathies and rare lymphomas) for decades – while being derided as 
      With the personal attention of the NIH director, will 
    research funds will be prioritized to XMRV/MLV research and clinical 

    The program can be downloaded from here: