Saturday, September 25, 2010

An Homage to Advocacy in the Trenches

Neil Gaiman is one of my favorite authors. In his book "Neverwhere", there is
another whole world brewing beneath the city streets, in London Underground.
People fall through the cracks and end up there, becoming forever invisible to
those who walk and work and live their normal lives Aboveground. Life in
Neverwhere ceases to follow the rules of normalcy, and getting through each
day's fresh serving of Hell is a cause for celebration.
So it is with this disease, which we call an invisible illness.
 
New blog at
http://cfsuntied.com/blog2/2010/09/25/neverwhere-an-homage-to-advocacy-in-the-trenches/

 
Thanks everyone!
Khaly
khalyal@yahoo.com
khaly@cfsuntied.com

Friday, September 24, 2010

XMRV Workshop Report

September 24, 2010

1st International XMRV Workshop Report

XMRV has been discussed at numerous scientific sessions since its discovery in 2006, but the 1st International XMRV Workshop was the first scientific conference dedicated solely to presentations about the family of gammaretroviruses that includes XMRV and polytropic murine leukemia viruses (MLVs) associated with prostate cancer and chronic fatigue syndrome (CFS). Over the two-day session, 43 new presentations of data were made by groups from around the world following an opening address by NIH Director Dr. Francis Collins. The final question and answer session was webcast and abstracts are available online. Science magazine and NCI Cancer Bulletin provided short follow-up reports, and the organizing committee is preparing a manuscript of the proceedings for publication in Retrovirology, an online, open-access journal. Our report on the conference and a comparison of new data on the prevalence of XMRV and MLVs in samples from CFS patients supplement these reports and provide a focus on the CFS data and key issues raised at the conference.

While the Workshop did not provide satisfying resolution or easy answers, there was considerable optimism among speakers and panelists about the accelerating pace of progress. Most agreed that accord on key issues is likely less than a year away. While that timetable is little comfort to people whose lives have been derailed by any of the conditions linked to this family of retroviruses, this meeting demonstrated that XMRV has rallied scientific interest unmatched in the history of CFS.

To learn more about the research presented at this meeting:
* Read the report, "Of Mice and Men: A Summary of the First International XMRV Workshop," by Kim McCleary, Steven Kleinman, BSc, MD, and Suzanne Vernon, PhD http://www.cfids.org/xmrv/wrkshp-report.pdf

* Review the Comparison of Studies of the Prevalence of XMRV/MLVs in CFS http://www.cfids.org/xmrv/wrkshp-data-comparison.pdf

* View the meeting abstracts http://www.virology-education.com/index.cfm/t/Workshop_material/vid/1A5D65BD-FB8B-8AE1-5E10829372D080B4

* Watch the final Q&A session http://videocast.nih.gov/Summary.asp?File=16098

* Read the report in NCI Cancer Bulletin http://www.cancer.gov/ncicancerbulletin/092110/page5

* Read the summary of the Science magazine article http://www.sciencemag.org/cgi/content/summary/329/5998/1454 (Note: Science magazine content is available to subscribers only and copyright protections apply.)
 

Thursday, September 23, 2010

XMRV Q&A

 Does this latest information prove once and for all that ME/CFS is not a psychological or psychosomatic illness as described by those who don't understand the disease?

Absolutely! Actually, there are thousands of research articles showing the very real biological problems that ME/CFS patient's experience such as low NK cell count and function, MRI and SPEC scan changes, and repeated chronic infections, to mention just a few. Only the most stubborn and misinformed individuals refuse to believe that this disease is real and serious. The process of placing poorly understood illnesses into a psychological category is very similar to what happened in the early days of MS and epilepsy before the advent of technologies which proved the illnesses were "real." Unfortunately, many in the scientific and medical fields have not learned from their past mistakes.

 

http://wpinstitute.org/xmrv/xmrv_qa.html

 

Virology Seminar Abstracts

 
 1st International XMRV Workshop on Prostate Cancer and CFS/Neuroimmune Diseases

Reflections on practicing medicine on the fringe

 

Over the subsequent years, though, I thought a lot about what he said, and what he was trying to tell me. What is the value of recognizing a mystery, and then going about solving it?

Well, in the world of medicine, it means a great deal. Too many patients are told their symptoms or ailments don't fit into any known pattern or doctors have never seen a patient like this before.

Some of our greatest progress in medicine has been when we truly explored a mystery and tried to make sense of it. While it is easy to write something off as an anomaly or an aberration or "not fitting within the standard deviation," a mystery may in fact teach us something, and perhaps advance the entire field of medicine in the process.

When the Republicans Lie About Health Care, We Have to Fight Back

Here are a few of the ad's specific lies:

• The ads say that the new law cuts $500 billion from Medicare and will hurt the health benefits seniors receive. That is not true. The Affordable Care Act eliminates waste, fraud and abuse, including overpayments to insurance companies that provide Medicare Advantage plans.

• The ads say that the new law means "seniors could lose their doctors" or that it "threatens seniors' ability to keep their own doctor." Nothing in the Affordable Care Act restricts any Medicare enrollee's access to the doctor of their choice.

• The ads feature seniors saying the law will "hurt the quality of our care." The fact is that the law forbids reductions in conventional Medicare benefits, adds no-cost preventive services, closes the "doughnut hole" gap in the prescription drug benefit and makes substantial improvements in quality of care.

The truth is that the new law strengthens Medicare without cutting anyone's guaranteed benefits. It cuts waste, fraud and abuse, reduces prescription drug costs, and helps seniors remain independent and stay in their own homes.

In their Sept. 17 report, FactCheck.org sums it up perfectly: "Most of the ads conclude with someone looking at the camera and pretending to tell the targeted lawmaker, 'You're fired!' Our question is, who gets fired for making misleading ads?"


Nancy Klimas, Ken Friedman and Marly Silverman on radio

Nancy Klimas, Ken Friedman and Marly Silverman were recently
interviewed on the Miami radio show, 'South Florida Spotlight'. To
listen, scroll down to the bottom of the page; it's the 9/19/10
11:00pm show.
--------------------------------------------------------------------------------------

http://www.litemiami.com/spotlite/index.aspx

September 19, 2010, 11:00 p.m.
Pandora - http://www.pandoranet.info/
Dr. Ken Friedman, Marly Silverman
University of Miami Dept. of Neuroendocrine Immunie Disorders
Dr. Nancy Klimas, Researcher
 
 

Mikovits to speak at UCLA 10/8/10

http://www.uclaaidsinstitute.org/events/pdfs/Flyer%20-Mikovits%20100810.pdf

UCLA AIDS Institute - CFAR Center For AIDS Research - University of
California Los Angeles
Special Lecture

Judy Mikovits, Ph.D.
Research Director
Whittemore Peterson Institute (WPI) for Neuro-Immune Disease

"MLV related viruses in neuroimmune disease and cancer: Is XMRV or
PMRV the pathogenic variant or does it take two to tango?"
Friday October 8, 2010 12:00pm to 1:00pm 23-105 CHS

Hosted by the Basic and Translational Research Program Section

Wednesday, September 22, 2010

Cachexia and Protein Consumption

 
Cachexia is best known as a disease of cancer patients, but it is seen in patients with chronic infection, AIDS, heart failure, rheumatoid diseases and chronic obstructive pulmonary disease.
Contrary to what many think, this is not a disease caused by starvation. The loss in weight and body mass is driven by a metabolic disease manifested by increased energy consumption.
 
More commonly the person has lost a great deal of immune function and becomes susceptible to infection or cachexia can lead to metabolic disorders that can cause heart rhythm disturbances.
 
Cancer cachexia appears to be caused by chemicals given off by the tumor or by the patient's immune system that is trying to combat the tumor. These chemicals are called cytokines. Some cytokines have also been found to cause depression which can also of course cause loss of appetite which worsens the condition.
 
* * *
I find that my body functions best with extra protein.  I cannot get enough from a vegetarian diet (I'm allergic to soy).

How your health care may change – The Chart - CNN.com Blogs




 

FDA approves first MS treatment in pill form – The Chart - CNN.com

 
 
 
There's enough overlap in symptoms that CFS is often misdiagnosed as atypical MS.  Maybe this would work for some of our symptoms?
 
 
 

Tuesday, September 21, 2010

Komaroff Webinar on YouTube

From CFIDS Assoc. Facebook page-
http://www.facebook.com/CFIDSAssn

The recording of Dr. Anthony Komaroff's webinar, "CFS & The Viral
Connection," is now available on our YouTube channel at-
http://www.youtube.com/watch?v=hyWSNitU-PQ

You can find all 14 webinar recordings at www.youtube.com/solvecfs
 

The Awful Disease Washington Forgot

The Awful Disease Washington Forgot

By Llewellyn King
Published September 21, 2010 – 11:32 am

In the end, as with so much else, the fight against disease leads to
Washington. There are big diseases with big lobbies, like AIDS,
Alzheimer's, cancer, diabetes and heart. Their millions of sufferers
have associations and lobbies to push for federal research money and
to shape its expenditure. Most have their celebrity backers, like
Elizabeth Taylor for AIDS, Jerry Lewis for muscular dystrophy, and
Mary Tyler Moore for diabetes.

Big lobbies mean big federal dollars, the attention of the National
Institutes of Health in Bethesda, Md., and the Centers for Disease
Control in Atlanta. If the disease is the kind for which a single or
series of silver bullets can produce a cure, Big Pharma comes in with
big funding, in the hope that it can develop a lucrative line of
medicines, patentable for long-term profits.

Yet there is a vast archipelago of diseases as cruel in their impact,
horrible to bear and crying out for research that is not sporadic,
underfunded or, through ignorance, misdirected.

One such is Chronic Fatigue Syndrome (CFS), a name so gentle that it belies the ghastliness of this affliction. Sufferers accuse the U.S. government, abetted by other governments, of choosing this name over the older and more commanding name, myalgic encephalomyelitis.

CFS is not about a name game. It is about debilitation lasting
decades, essentially from inception to death. It is about years of
lost living, terrible joint pain and total collapse, as the immune
system more or less shuts down. It is like some great constricting
snake that denies its victims the final convulsion.

Enter Sen. Harry Reid (D-Nev.). While he is not generally regarded as
a man on a horse these days, to CFS sufferers he is a figure of hope.
He has stood up for CFS research.

This is not because the Senate majority leader sought to know a lot
about a hard-to-understand and terrible affliction, but because CFS
was found in two clusters in his home state. The largest outbreak was
at Incline Village, Nev. In New York state, there is a cluster too.

In the 1980s government scientists looked at these clusters, but
refused to accord them the respect the suffering deserves. It was then
that the name was changed; "fatigue" was less politically incendiary
than myalgic encephalomyelitis.

Incline Village is significant because it shows that CFS is
infectious, or that it has environmental causes. The thinking is that
while clearly not having a strong transmission path, it does happen.

Recently a sufferer in England wrote to The Daily Mail, saying that
her husband, who had cared for her for nearly 20 years, had become
infected. This is particularly serious in England, where the medical
establishment has insisted on treating the disease as a psychological
disorder, despite recent research suggesting strongly that it is
retrovirus XMRV.

Now, at last, two world-famous pathogen hunters, Anthony Fauci of NIH,
previously seen as a debunker of CFS science, and Ian Lipkin, a
celebrity pathogen hunter, are heading a major safari into the dark
world of retroviruses.

For the first time, the loose global network of sufferers–nobody knows
how many there are in the world, but in the United States there could
be as many as 800,000—are beginning to apply political pressure.

Their plight is pitiable. The full horror of the disease is described
in a paper by Deborah Waroff, a gifted New York writer who was
stricken in July 1989.
An energetic cyclist, skier, squash and tennis
player, Waroff wrote in a paper for a Washington conference:

"My sickness began with a flu-like illness. After a week, thinking I
was pretty much well, I went back to my ordinary activities, like
tennis and my biking. A week later, I was sick again. This repeated
several times that summer until I soon got to a point where I was
never well again. I had classic symptoms. After a little activity I
would just collapse, totally fold up. I also had symptoms like fevers,
dizziness, upset tummy, swollen lymph glands and a new type of
frequent headache. I had cognitive problems embarrassingly often,
including dysphasia—putting the wrong words in sentences. I was often
too weak to talk on the phone, or after five minutes of talking I
would fold."

In 2003, things got worse. But two years later, Waroff regained some
of her life through the controversial treatment of ozone therapy. This
treatment cannot be prescribed in most states. Allowed in New York, it
is hard to come by and expensive. Some other countries, particularly
Canada, have been more committed to fighting CFS and the use of ozone
therapy.

Harry Reid, and others, there is more work to be done.
--------------------------------------------------------------------------------------

In 1997 Llewellyn King launched "White House Chronicle" in Washington,
D.C., as a radio companion to White House Weekly, part of his King
Publishing group of quality newsletters. He also became host and
executive producer of the program.
Soon after its launch, King and director Michael Marlow interested
WHUT-TV, Channel 32,  a PBS station in Washington, D.C., in carrying
"White House Chronicle."
"Our aim was to look at the news with a good sense of fun, and to
bring to television gifted journalists whose bylines, or voices, were
more familiar to the public than their faces," said King.
In this "White House Chronicle" has succeeded enormously, introducing
more than 300 new faces to television—some of whom have gone to be
broadcast fixtures.

JAMA call for papers -- infectious disease, immunology ... CFS?

 
As one Co-Cure subscriber kindly pointed out, that should say April 2011

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

[A MD with CFS asked me to post the following. Tom]

The Journal of the American Medical Association (one of the 2 most
influential journals in the US and around the world) is putting out a call
for papers for a theme issue on infectious disease and immunology. The
special issue will be published in April 2010 and other JAMA-affiliated
journals will also publish on this theme. Here is a chance for CFS
researchers/ clinicians to publish in  journal which reaches a wide medical/
scientific audience. It would be great if someone wrote a review of the
various immunologic findings in CFS and the infectious theories to date.
XMRV has not been mentioned in either New England Journal of Medicine or
JAMA that I know of. (hint, hint!)

Details: http://jama.ama-assn.org/cgi/content/full/304/10/1126

Ex-Sacramento County social worker extradited in IHSS fraud case

 
 
"Exploiting her position of trust as social worker, she created false IHSS records and then, with the help of 12 other real people, she was able to steal program money as pay for thousands of hours of services that were not actually provided," West said.
 
* * *
Yes, there's fraud in government programs to help the disabled, but it's not the disabled who commit the crimes, and there's no reason for the disabled to suffer for crimes they didn't commit, by having programs shut down because OTHER people were committing fraud.
 
In the case of IHSS, the actual caregiver is paid little more than minimum wage and the government tells them the maximum number of hours they're allowed to work.  If the caregiver writes down her maximum 4 hours on a day when she only worked 3, the "fraud" amounts to ten bucks or less.  Big fat deal.  The government wastes more than that every minute. 
 
(And, frankly, I know some of those paid caregivers, dedicated parents who gave up their good-paying jobs to stay home to take care of their own child rather than institutionalizing the child; they work 24 hours a day, 7 days a week, never a vacation, and get paid for working 3 or 4 hours a day.  If one of them should happen to bill for an extra hour now and then, that's just making up for the many hours they work without being paid.  Personally, I'm inclined to write it off to bad record-keeping.  They're not accountants, they're mommies.  Filling out a time sheet is probably the last thing on their mind in the course of a busy day, and they may try to reconstruct their hours for the pay period the day the time card is due ... just like many of us other working folk.) 
 
But here, a social worker who knew how the system works committed $300,000 of fraud.  The patients are not to blame, because there were no actual patients.
 
Similarly, in Medicare/Medicaid, it's not the patients who commit the fraud.  They're not the ones who type up the bills and send them to the government.  It's the DOCTORS and other people inside the system.  Yet the hysterical rantings of the media always seem to point the finger at the patients, who have no way of committing the fraud because they are not involved in the financial end of the process.
 
Again, sure, a few may get prescriptions for pills they don't really need and sell them for $5 each on a street corner to supplement their meager Disability checks (my late best friend got only $300 a month from SSDI, and another friend, an RN, gets only $648 -- just try to live on that!), but the big fraud is committed by doctors and purveyors of things like wheelchairs and scooters.  Nonetheless, the little guy gets the blame.
 
I have no problem with investigating to find fraud and waste in government programs that help the poor and disabled -- it's my tax money, too -- but let's focus those investigations where they belong, at the top of the food chain, not the bottom, trying to throw helpless people in the street and their caregivers in jail over a few dollars, when the ones with the six- and seven- and eight-figure fraud and overcharges get off scot-free.
 
Remember, the State of Connecticut launched a million-dollar investigation to root out all those slackers who are collecting Disability when they could work, and found a whopping six people in the entire state.  Assuming an average Disability benefit of $1000/month, it'll take 14 years to recoup the cost of the investigation.  Or they could've investigated one fraudulent medical supply company and made back the money in a couple months.  But doctors and medical suppliers make campaign contributions; poor disabled people and their equally poor caregivers do not.  So the investigations tend to focus on those who are NOT friends of the powerful.
 
 

Funding inequality revisited

 
 
Alzheimers families are complaining about getting ONLY $437M a year in govt research funding.  CFS averages about $4M a year from the govt.  I think patient research funding may exceed govt funding.
 
Our disease is contagious, a retrovirus, meaning that unlike Alz, anyone could be the next person to get it.  Ours also strikes down people in the prime of life -- not 10 years of caregiving at an age where they're getting retirement benefits to support themselves, but sometimes 40 or 50 years of caregiving and the loss of what should be our prime earning years, and most being denied government benefits so having "no visible means of support".
 
"the U.S. government annually spends $6 billion on cancer research, $4 billion on heart disease research, approximately $3 billion on HIV/AIDS, which he says are all good investments and have led to lives being saved. However, when it comes to Alzheimer's research, Johns notes that funding by the National Institutes of Health is only $469 million per year"
 
If you're motivated to make a comment on that article, here are the statistics you need:
Sorry, those were the most recent numbers that were available in December 2008 when that blog post was written, but little has changed since then.  Doesn't matter that we now have XMRV or HGRV or HGRAD or whatever they're calling it nowadays, we're still not getting anywhere near as much funding as that other retrovirus, AIDS, or any other major disease; we're still down there with the "rare diseases" that strike only a couple hundred people in the world.
 
And that's not going to change until we get the general public involved -- people who are afraid that they're going to catch this horrid disease and start screaming at the government to find something to prevent it.  Those of us who already have it appear to be invisible to the government. 
 
And if you haven't read "Osler's Web" by Hillary Johnson yet, please do so soon.  That tells the whole sordid story of the cover-up.  Activists are now starting to use terms like "violation of human rights" and consult with lawyers on whether there's something to be done.
 
I was in the second wave of patients -- the first wave was in 1984 and I got sick in February 1987 -- so I probably don't have a good claim that they could've stopped it before it got to me because there wasn't a lot of research time available in the interim to find something so complex. 
 
But someone who got sick AFTER Elaine DeFreitas found a virus which CDC (intentionally) "couldn't replicate" in the 1990s, or who got sick from a blood transfusion, might actually have a decent case.
 
 

Monday, September 20, 2010

Sacramento gluten-free market finds its niche despite recession

 

Reflections by Tom Hennessy

 

Study Links Obesity to Childhood Virus - AOL Health

 
"adenovirus 36 (AD36), which is the only human virus currently linked to obesity. There are more the 50 strains of adenovirus known to infect humans and they cause a host of respiratory and gastrointestinal infections.

Dr. Jeffrey B. Schwimmer, associate professor of clinical pediatrics at UC San Diego, said that the AD36-positive children weighed almost 50 pounds or more on average than kids who were AD36-negative. More than half of the children -- 67 -- in the study were obese. The researchers detected neutralizing antibodies specific to AD36 in 19 of the children, 15 percent. Within the group of obese children, those with AD36 were an average of 35 pounds heavier than obese children who were AD36-negative."

Dr. Teitelbaum -- Caveat -- and info on Hypoglycemia

Dr. T's latest kick seems to be eliminating sugar.  That one sends up big red flags for me. 
(1) Artificial sweeteners make a lot of CFS patients worse. 
(2)  Dr. Bruno notes that CFS patients tend to be hypoglycemic, 15 points lower than they should on a sugar test, so I'm not sure it helps us to go sugar free; hypoglycemia causes all manner of symptoms, including fainting. 
(3)  Dr. Bruno notes that brain neurons need sugar to function, and it has been my personal experience that when I can't think straight, sugar produces more effect than anything else, even caffeine. 
 
"The more challenging the mental task – like those difficult attention tests – the more sugar neurons need to function." Steroids make it even worse.
 
HYPOGLYCEMIA
"The body needs fuel to work. One of its major fuel sources is sugars ...Of all the organs in the body, the brain depends on sugar (which we are now going to refer to as glucose) almost exclusively. ... The brain then sends out messages that trigger a series of events, including changes in hormone and nervous system responses that are aimed at increasing blood glucose levels. Insulin secretion decreases and hormones that promote higher blood glucose levels, such as glucagon, cortisol, growth hormone, and epinephrine all increase. ...
 
"The first set of symptoms are called adrenergic (or sympathetic) because they relate to the nervous system's response to hypoglycemia. Patients may experience any of the following;
  • nervousness,
  • sweating,
  • intense hunger,
  • trembling,
  • weakness,
  • palpitations, and
  • often have trouble speaking
"... Somewhere in the 50 mg/dl range, most patients progress to neuro-glyco-penic ranges (the brain is not getting enough glucose). At this point, symptoms progress to confusion, drowsiness, changes in behavior, coma, and seizure."
 
So, as you see, eliminating sugar can simply make your bad symptoms worse.
 
Here's some information from British CFS specialist Dr. Myhill:
 
 
 

DoD Appropriations Bill -- Medical Research

CFIDS Association of America reports:
 
From the Senate Department of Defense Appropriations Bill for FY2011:

Peer Reviewed Medical Research Program.—The Committee has
provided $50,000,000 for a Peer Reviewed Medical Research Program.
The Committee directs the Secretary of Defense, in conjunction
...with the Service Surgeons General, to select medical research
projects of clear scientific merit and direct relevance to military
health. Research areas considered under this funding are restricted
to: amyotrophic lateral sclerosis, autism, blood cancer, chronic fatigue
syndrome, chronic migraine and post-traumatic headache,
dental research, drug abuse, epidermolysis bullosa, epilepsy, fragile
x syndrome, inflammatory bowel disease, interstitial cystitis, kidney
cancer, lupus, melanoma, mesothelioma, multiple sclerosis,
neuroblastoma, neurofibromatosis, osteoporosis and related bone
disease, Paget's disease, pancreatitis, Parkinson's, pediatric cancer,
pheochromocytoma, polycystic kidney disease, post-traumatic osteoarthritis,
scleroderma, social work research, tinnitus, tuberous scle184
rosis complex, and vision research. The Committee emphasizes that
the additional funding provided under the Peer Reviewed Medical
Research Program shall be devoted only to the purposes listed
above.
 
* * *
By my count, that's $50M divvied up among 32 diseases = $1.5M each.  Barely $1 per patient for CFS.
 
Compare that to $650 per patient for cancer or $250 per patient for MS ... both of which receive even *more* funding under this bill.
 

CFSAC Testimony- from Kassy + Video

 

Sunday, September 19, 2010

Cinder Bridge: Good days, bad days, and invisibility

 

CFSAC Letter Time~ "Crimes and Dimes"

 
* * *
Dear Readers, I apologize again for getting too tied up with other things to tell you to submit written testimony for the October meeting, but I can assure you that several activists have written fine letters on your behalf, including one from me which pointed out that we're almost exactly one year from the XMRV publication and the front-line doctors *still* ain't got a clue because there's not been a decent widespread education movement to let them know they need to stop treating it as "all in your head".
 
 

Dr. Cheney comments on a you-tube video made about his XMRV poster

Dr. Cheney comments on a you-tube video made about his XMRV poster


Dr. Paul Cheney has given me permission to post his comments about a
you-tube video that was made about his poster presentation at the recent
XMRV Workshop at the U.S. NIH earlier this month.  It's O.K. to repost these
comments, so long as they are attributed to Dr. Cheney.


Rich Van Konynenburg, Ph.D.
richvank@aol.com


"A poster presentation by me made at the 1st International XMRV meetings
held at the NIH in early September, 2010 was partially summarized by a
U-tube video (see
http://www.youtube.com/watch?v=gkgEQ...layer_embedded ).  While the video was
in many respects very well done and brings needed attention to CFS and its
link to XMRV, there are several errors and misrepresentations made about the
poster and what it actually said or implied.

"My biggest problem with this U-tube video was the emphasis on "heart
failure" as opposed to heart dysfunction or "LV diastolic dysfunction" which
predisposes to orthostatic intolerance rather than death by heart failure
which is very rare in my select cohort. My poster never said heart failure
was associated with CFS.  However, we do know that broadly defined diastolic
heart failure does not typically occur until age 72 or later so what will
happen to my patients when they get into their 70's is up in the air
,
assuming they are not treated with things like CSF's before then.  There is
also the semantic question of how heart failure is defined.  If it is
defined by organ failure and usually death within 5 years, I don't see this
and is likely very rare in the age brackets I see with CFS with an average
age of 49.  If it is defined by organ dysfunction including heart, GI tract,
exercise intolerance, heat intolerance and brain problems etc. produced by
low cardiac output then you could use the term heart failure due to
diastolic dysfunction in much of my practice.
  Death by such a functional
definition is, however, rare compared to the heart failure patients admitted
to hospitals with normal ejections fractions and deemed diastolic heart
failure.  Such a diagnosis is very lethal over the next five years with only
a third alive after five years and virtually all are quite disabled and will
remain so.

"Another problem is the "8 of 16 family members" positive for XMRV.  The
poster actually says 50% of healthy family controls or exposure controls
(N=8) were positive.  The U-tube video assumed that there were 8 positives
when in fact 8 were tested and 4 were positive.  6 of 8 were healthy family
members of CFS cases and 2 of 8 were CFS exposure controls and not family
members.  However, when we get the serology data back, I think the number of
family members infected will be higher than 50% and the N value will climb
well beyond 16 so this correction may soon be mute.

"I think the U-tube video misses the very important point that the cancer
rate is much higher (47%) in the non-CFS, first order family members than in
the CFS cases themselves.
  This will be the big story going forward as to
how you answer the question of why this is so.  Is CFS a compensatory
response to reduce serious disease and early death?  I will say that Dr.
Jason's assertion (or perhaps it is only the U-tube's assertion) that death
occurs 25 years before they should have died is a fallacy as that number is
drawn from the average age of all those who actually "died" and not a large
group of CFS cases.  In addition, perhaps a third of deaths occur by suicide
in the young CFS cases and that will skew that number of 25 years before
their time.

"The U-tube's final assertion that XMRV is a killer is somewhat exaggerated,
at least in CFS.  It certainly can be a killer but the U-tube video paints
the death rate as much higher than it really is in CFS.  In their defense,
XMRV is a killer but more-so in the non-CFS but infected cohort which I
think will be much larger than CFS itself and drives many cancers to be very
aggressive with much higher death rates than would otherwise occur (see
Singh et al, PNAS, 2009).  XMRV may also be driving the epidemic of
diastolic heart failure now seen in those over 70 and most die quickly
within five years once admitted to hospitals for heart failure (see Owan et
al, NEJM, 2006).  XMRV may well be a killer, but the paradox is that not as
much a killer in CFS unless perhaps they reach age 72 or above but that is
near our present human life expectancy.  The most interesting question of
all is how did they live that long with such a killer virus and with such
severe disability comparable to heart failure?"

Paul Cheney, M.D.
 


Huckabee Opposes Insurance For People With Pre-Existing Conditions

"A moment of candor from the evangelical former Arkansas governor. Hard to say how that comports with voting on values, though.

It's worth pointing out, too, that the health care law's individual mandate is in large part meant to make sure people don't wait until they get ill until they buy insurance. But Republicans want to do away with that part of reform as well."

* * *

The biggest problem with American health care today is that insurance is mostly tied to employment. Lose your job, lose your insurance.

And that when disabled people start their own businesses, they find it impossible to get insurance because SMALL businesses are individually underwritten, so the same pre-existing conditions that made it impossible for you to get insurance when you were unemployed make it impossible to get insurance when you're self-employed. You have to grow your business beyond that number of employees (I think it's 10) in order to avoid individual underwriting, and it's hard to grow a business when you're spending all your money on medical bills.

Half of Americans have pre-existing conditions (96% of them invisible). Hospitals are already screaming about the financial difficulties caused by uninsured patients. Can you imagine the result when HALF of all patients are uninsured?