Saturday, April 17, 2010

Quote of the Day

"I cannot believe that the purpose of life is to be happy. I think the purpose of life is to be useful, to be responsible, to be compassionate. It is, above all, to matter, to count, to stand for something, to have made some difference that you lived at all."
                                    -- Leo Rosten
 

I'm trying!
 
 

CFIDS Watch: Horror Statistics from the US Government

 
EXCERPTS

Government statistics show an appalling neglect of ME/CFIDS research which is costing the US economy billions. From the CDC and NIH web sites:

  • Number of people in the US with HIV or AIDS, diagnosed or undiagnosed: 1.1 million
  • Number of new Lyme cases reported in the US between 1990 and 2008: 328,128
  • Number of people in the US with CFS: 1+ million (tens of millions more have "similar fatiguing illnesses" but don't meet the CDC's strict "research" criteria)
  • NIH money to be spent on HIV/AIDS research in 2010: $3 billion
  • NIH money to be spent on Lyme disease research in 2010: $23 million
  • NIH money to be spent on CFS research in 2010: $3 million (yes, you read that right. One thousand times less than HIV/AIDS!)
  • Number of categories getting more research money than CFS: 209
  • Number of categories getting less research money than CFS: 2
For perspective, here are some other examples of NIH funding categories for 2010:
  • hay fever, $6 million
  • Tourette Syndrome, $9 million
  • Carcot-Marie-Tooth Disease, $13 million
  • homelessness, $13 million
  • methamphetamine, $70 million
  • Small Pox, $98 million
  • violence research, $191 million
  • influenza, $212 million
  • health effects of climate change, $300 million
  • nanotechnology, $326 million
  • tobacco, $326 million
  • depression, $418 million
  • obesity, $687 million
  • networking and information technology R&D, $950 million
  • drug abuse, $1 billion
  • substance abuse, $1.8 billion
  • health disparities, $2.7 billion
  • bioengineering, $2.9 billion
  • biotechnology, $5.5 billion
What's wrong with this picture?

Thanks to Hillary Johnson and her blog post about the NIH's nifty new search engine, without which I wouldn't have discovered these horrifying statistics.
 

Friday, April 16, 2010

Busted! :)

This press release was issued today 2010/16/04 in The Netherlands bij dutch
jounalist Toine de Graaf. Here is an English translation.


XMRV virus found in Dutch patients

Gendringen, 2010/04/16 - Researchers at UMC St. Radboud announced in
February no XMRV virus has been found in the blood of Dutch chronic fatigue
syndrome (ME/CFS) patients. They concealed, however, that U.S. reseachers
did found traces of this retrovirus in blood samples of the same patient.
This is shown in a web publication of Ortho magazine, which is put online
today.

For years medical researchers have been searching for the biological cause
of CFS, but always without success. Last October Americans announced a
breakthrough: researchers from the Whittemore Peterson Institute (WPI) in
Reno found the retrovirus XMRV in many patients with ME/CFS. The study was
published in the leading scientific journal Science, after a Research period
of 2.5 years.

Researchers at UMC St. Radboud had doubts and decided to repeat the Science
research, with frozen blood samples from Dutch patients from 1991-1992. The
study took place very rapidly under the leadership of Nijmegen experimental
virologist Dr. Frank Kuppeveld and internist Professor Dr. Jos van der Meer.
But they found nothing. "Neither in the blood of 32 patients, nor in that of
the 43 controls, the retrovirus was found ", the UMC St. Radboud was quoted
in a press release issued at the end of last February.

Now it is obvious certain things are concealed. This week a letter has been made public by Annette Whittemore, who directs the WPI. In this letter she describes that the WPI, at the request of Frank Van Kuppeveld, has tested some blood samples from the Dutch cohort study prior to the completion of the Nijmegen study. The WPI found traces of XMRV in these samples. Whittemore says she possesses email correspondence that shows Van Kuppeveld was aware of the WPI research results before the Dutch study was published in the British Medical Journal.

The web publication of Ortho provides a reconstruction of events based on an
interview with Dr. Judy Mikovits, Research Director of the WPI. The web
publication coincides with the appearance of the April issue of Ortho, were
further attention is spent on XMRV.


Further information (in Dutch):
http://www.ortho.nl/bestanden/artikelen/ortho102laatstenieuwsxmrvb.pdf  
 

HIV drugs to help CFS?

*Researchers Discover New Use for HIV Drugs*

By *Andrew Hull* *Posted: 04/15/2010*  EmoryWheel.com


Emory researchers have found that drugs used to fight HIV may also be
useful in fighting an underlying virus common to both prostate cancer and
chronic fatigue syndrome (CFS).

Emory University and Atlanta Veterans Affairs Medical Center (VAMC), in
conjunction with the University of Utah, found that a virus known as the
xenotropic murine leukemia virus-related virus (XMRV) is a cause for CFS and
prostate cancer and that those illnesses can be treated using existing
anti-HIV drugs.

XMRV and HIV are retroviruses that, according to the National Institutes of
Health, work by integrating the virus' genes into a cell. The discovery
suggests that a common drug could be used to treat the underlying virus of
other diseases including a type of cancer and CFS.

Raymond Schinazi, Emory School of Medicine's Frances Winship Walters
professor of pediatrics at the Center for AIDS Research and the Atlanta
VAMC, tested 45 different anti-HIV drugs along with multiple other
anti-viral drugs against XMRV.

Schinazi said that because the XMRV virus is similar to a mouse retrovirus,
certain HIV treatments could work against it. He said, however, that studies
yielded mixed results.

According to research published in the journal PLoS ONE, the most potent
drug against XMRV is raltegravir, sold under the commercial name Isentress.
Raltegravir was approved in 2007 for people whose HIV infection was
resistant to other drugs. A 2009 reassessment expanded the drug's potential
applications to all HIV patients. Schinazi said the drugs were most
effective against XMRV when used in a "drug cocktail," which can be
beneficial for later public health breakthroughs.

"This combination of therapies might also have the added benefit of delaying
or even preventing the virus from mutating into forms that are
drug-resistant," Schinazi explained.

Schinazi and Associate Professor of Pathology at the University of Utah
School of Medicine Ila Singh are currently studying the development of
similar drug-resistance in the XMRV.

Singh said that much more research must be conducted before the anti-HIV
drugs can be used on other diseases because XMRV did not always appear with
CFS or prostate cancer.

Schinazi added that they need to test XMRV treatment on animals before they
can proceed with human testing.

http://www.emorywheel.com/detail.php?n=28373

Functional Testing, Disability Documentation, and Legal Issues Related to Fibro

 
Functional Testing, Disability Documentation, and Legal Issues Related to Fibromyalgia and Chronic Fatigue Syndrome

http://fmnetnews.com/resources-disability.php
 

Thursday, April 15, 2010

Dr. John's submission on DSM-5 controversy

PERMISSION TO FORWARD, USE IN NEWSLETTERS AND RE POST ON FACEBOOK PAGES.

Submission to APA Re: "Complex Somatic Symptom Disorder", DSM-5 (posted 14
April 2010)

From: Dr John H Greensmith, ME Free For All.org

The fundamental stumbling block in finding a single diagnostic category most
suitable for CFS/ME, whether in the Diagnostic and Statistical Manual for
Mental Disorders (DSM) of the American Psychiatric Association, or the World
Health Organisation (WHO) Handbook, or elsewhere, is that it contains, by
definition, more than one term, each of which is unlikely to be
satisfactorily accommodated within only one category.

Even if each component, M.E. and CFS, (whether one takes M.E. to be Myalgic
Encephalomyelitis or Myalgic Encephalopathy), fitted neatly and exclusively
into one category (for example, neurological), or another category (for
example psychiatric), or if it appeared always in more than one category
(for example neurological and psychiatric) but never in some other category
at all, the terms must first be separated.

The problem is further complicated for Chronic Fatigue Syndrome because,
even when separated from M.E., CFS comprises several heterogeneous
conditions, each with a variety of organic and/or psychiatric causes, which
could not be placed in a single category. Even if M.E. is taken to be a
discrete illness with no subsets (and this is not universally agreed), it is
possible that some patients may co-incidentally have an additional but
unrelated psychiatric history, or concurrent psychiatric illness, that did
not cause, or was not caused by also having, M.E.

We should be mindful of a couple of concerns beyond the establishment of an
initial classification: firstly, whether an illness shifts from one category
at onset (for example, organic) to another as the illness progresses (for
example, somatoform); secondly, there are also serious implications about
whether a treatment recommended for a particular condition within CFS may be
inadvisable, even harmful, for an M.E. sufferer.

This tangled knotty mess has been largely man-made since about 1988 when the
terms CFS/ME became amalgamated into one, which has been dominantly
"preferred" by influential medical authorities, who also advise governments,
since that time to the present day. It can, however, be unpicked if there is
the will. This Research Psychologist and veteran M.E. sufferer since 1988
(22 years at time of writing) asserts that the following questions must be
answered by anyone advocating particular nomenclature and classification of
illnesses that would affect the treatment that M.E. sufferers would be
recommended to have.

CFS/ME has been interpreted in several different ways: firstly, that the
terms are synonymous and interchangeable; secondly, that M.E. is one of a
number of illnesses contained within Chronic Fatigue Syndrome; thirdly, some
people have been known to use both of these, at different times, to suit the
occasion. Fourthly, there may be other possibilities which we haven't
thought of, though these, of course, could not be discussed unless or until
identified or disclosed.

In the first case, if M.E. is believed to be always, without exception,
synonymous and interchangeable with Chronic Fatigue Syndrome and, if CFS is
the "preferred" term, why do they not drop the term M.E. altogether if no
value is added by keeping it? Many of us suspect that retaining it is an
insurance policy in case a definitive diagnostic test – such as a blood
test, or scan – is ever found for M.E.

In the second case, if M.E. is a subset of CFS, which are any of the other
subsets that we know about and according to which criteria? Why is M.E.
apparently the only one to be taken under its wing, when other conditions
could be made to fit by the same fatigue criteria, for example, CFS/MS?
Indeed, CFS may be so loose a diagnostic term that there is no illness, or
post operative recovery that could not escape its clutches, yet only M.E. is
ever clamped to it.

There is another paradox: retaining the term M.E. while at the same time
disbelieving, or denying its very existence, as some do. Saying the very
initial letters M.E., even if as part of the hybrid CFS/ME, as it appears in
the NICE (National Institute for Health and clinical Excellence) guidelines
for example, is giving M.E. a reality to which it is entitled; yet some
doctors tell patients M.E. does not exist. Despite persistent assertions
that there is no evidence of inflammation to justify the –itis part of its
name, there has been indisputable postmortem evidence from several cases of
people, who had died after having M.E., from around the world, to make it
undeniable. The problem is the lack of universal agreement on similarities
of inflammation, or other abnormal pathology, in people living with M.E.
There is inherent difficulty because absence of evidence of abnormal
pathology does not prove there is none that exists, which has not yet been
found. This is never going to be properly resolved unless we look for it and
there is not the appropriate funding for biomedical research to seek it.

Nevertheless, M.E. is a distinct illness, which can stand alone. There is no
need for CFS, PVFS, CFIDS or any other name as a synonym. Far from being
helpful, using any other term hampers research progress by polluting the
purity of the M.E. data set.

There is a widely held belief that "somatoform" is a creation to enable
doctors to say something rather than admit they do not know. It is not
compelling that, if there is currently no known organic cause of M.E., the
origin must be a psychiatric one, rather than there is yet a physical one to
be found.

The second concern of the shift of classification of an illness from being
believed to be of organic origin, at onset, to somatoform, as the illness
progresses, because it is said that the patient is sustaining it due to
faulty beliefs, is controversial and the onus is on those who wish to hold
this theory to prove its precedence over the physiological.

The third concern, dependent on categorisation of illness, by accepted or
assumed authorities, is about implications for treatment. Unsurprisingly,
the people pushing for somatoform classification are predominantly those
whose theories and employment depend on it. It is noteworthy that
psychiatrists are also pressing for a change of classification of M.E. from
neurological to their own speciality in the next version International
Classification of Diseases (ICD) of the World Health Organisation (WHO)
Handbook. The latest review (Twisk and Maes, September 2009) confirms the
findings of all previous research, including that of the same people who
advocate and practise them, that Cognitive Behaviour Therapy (CBT) and
Graded Exercise Therapy (GET) are ineffective and may make M.E. sufferers
worse, yet CBT/GET is the only recommended treatment for people with M.E.
Astonishingly, national and local groups, purporting to represent people
with M.E., are campaigning for more money to expand the service. Ironically,
any slow down in new clinics being opened, or the closure of existing ones,
providing CBT and GET, is for economic reasons due to the current recession,
rather than the medical ones that they do not work or may do harm.

Anyway, the practical evidence is that there is no reduction in the
Department of Health (UK) or Centers for Disease Control and Prevention
(CDC) in the US estimates of approximately 0.2 – 0.4% of the population with
CFS/ME and no significant return to work, school, or a resumption of a
previously normally healthy lifestyle and even more are being added to the
pile.

It appears that Chronic Fatigue Syndrome (CFS) is so loose a catch-all
diagnostic term that it is not only hampering research progress for people
with M.E. but every other condition too. This polluted data set must be
cleaned up first before any attempt at reclassification of any of its
components can be contemplated.

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

Finding love online, despite health problems - CNN.com

 
EXCERPT:

"On bigger dating sites the competition is tremendous," says Jim Houran, PhD, a clinical psychologist and columnist for Online Dating Magazine. "And let's face it, depending on what [the illness] is, it could very well make you uncompetitive in the larger dating pool."

Over the past five years, several sites -- such as Prescription4love.com, Nolongerlonely.com, and Cisforcupid.com -- have launched to serve the needs of people with conditions ranging from bipolar disorder to Crohn's disease. Together these sites now boast tens of thousands of members.

In addition to providing their users with a more hospitable environment, these websites defuse the tension over how and when to disclose an illness, which is often an issue for people with diseases and disabilities who venture onto mainstream dating sites.

Niche sites are also a lot less expensive. Prescription 4 Love, which started charging in May 2009, is $9.95 per month, while most of the features on No Longer Lonely (including the dating service and chat rooms) are still free.  (Access to the site's full features is available for $24 per year. That's substantially cheaper than sites like Match.com and eHarmony, which can cost upwards of $35 per month.)

No Longer Lonely (for the mentally ill)

STD-specific site Positivesingles.com.

DateAble.org  (a $125 initiation fee for the first year and $25 every year thereafter. )

Health.com: How to tell your partner a health secret

* * *

If you know of other dating and/or penpal websites for the disabled, please let me know and we'll add them to the list.

 

Wednesday, April 14, 2010

Hillary on Canada's decision on blood donations

 
"Why are Canadian health officials so much smarter than public health officials everywhere else? Well, for one thing, Canadian health officials have faced the tragic, and ultra-costly, results of failing to err on the side of caution. In 2005, the Canadian Red Cross Society pled guilty to distributing conatminated blood and blood products to Canadians in the 1980s" ... which cost them $55M in payments to victims.
 
* * *
I'm thinking that there are a bunch of medical malpractice lawsuits waiting to happen -- not just anyone who contracted it after a transfusion but also those whose health suffered as a result of doctors refusing to listen and refusing to prescribe anything but anti-depressants.
 
 

Gulf War Syndrome real, Institute of Medicine concludes

Gulf War Syndrome real, Institute of Medicine concludes


Note: Dr. Simon Wessely, a professor of psychological (psychosomatic)
medicine has long championed the psychosomatic explanation for GWS as well
as other diseases with similar core symptoms. Former head of the CDC CFS
Research Program, Dr. Bill Reeves also did studies in the '90s attempting to
prove GWS was "not real." Gulf War Syndrome real, Institute of Medicine
concludes

By Janet Raloff

(Science News) - Hundreds of thousands of U.S. veterans who claim to suffer
from Gulf War Syndrome just received powerful new ammunition against
arguments that their symptoms are trivial, if not altogether fictional. On
April 9, the Institute of Medicine – the health arm of the National Academy
of Sciences – issued a report that concludes military service in the Persian
Gulf War has not only been a cause of post-traumatic stress disorder in some
veterans but also is "associated with multisymptom illness."

That multisymptom illness is IOM's moniker for what the vets refer to as
Gulf War Syndrome.

"It is clear that a significant portion of the soldiers deployed to the Gulf
War have experienced troubling constellations of symptoms that are difficult
to categorize," according to neuroscientist Stephen L.
Hauser<http://neurology.ucsf.edu/brain/faculty/bios/hauser.aspx>of the
University of California, San Francisco. He chaired the IOM committee
that issued the new report.

"Unfortunately," Hauser said, "symptoms that cannot be easily quantified are sometimes incorrectly dismissed as insignificant and receive inadequate
attention and funding by the medical and scientific establishment.  Veterans
who continue to suffer from these symptoms deserve the very best that modern
science and medicine can offer to speed the development of effective
treatments, cures, and – we hope – prevention."

The new report argues that medicine's trouble in defining the nature or
precise cause(s) of Gulf War Syndrome does not negate its existence. Indeed,
the IOM's new analysis "began with the premise that multisymptom illness is
a diagnostic entity." Its analysis then investigated evidence to determine
whether a link exists between multiple, unexplained symptoms and Gulf War
deployment.

And IOM's report now concludes that Gulf War Syndrome is real, based on data
documenting a high rate of symptoms in former U.S. troops who had served in
the Gulf War nearly two decades ago. High-quality surveys of Gulf War vets
from other nations, such as the United Kingdom and Australia, show many of
those men also have been suffering similar chronic symptoms, which could
include everything from gastrointestinal illness and mental confusion, to
attacks of sudden vertigo, intense uncontrollable mood swings, fatigue and
sometimes numbness – or the opposite, constant body pain.

Last month, a team of researchers headed by Robert Haley of the University
of Texas Southwestern Medical Center at Dallas
reported<http://www.sciencenews.org/view/generic/id/57073/title/Scientists_offer_compelling_images_of_Gulf_War_illness>new
brain-imaging confirmation of Gulf War illnesses, which it described
as
a trio of syndromes with puzzling symptoms.

Like the UT Southwestern scientists, the IOM committee could not pin down
the source of the vets' symptoms. Equally puzzling was why some troops
sustained major chronic illness after a short tour of duty while others from
their military units incurred no such symptoms after many years in the
field. Indeed, it may prove difficult – if not impossible – to reconstruct
what happened nearly 20 years after the fact, the IOM committee noted.

But there's certainly a suspicion, it said, that multisymptom Gulf War
Syndrome(s) may reflect interactions between environmental exposures and
genes, such that genetics predisposed many troops to illness. IOM now
recommends that research commence immediately to investigate that genetics
angle. And there should be a big enough population to study this in, IOM
says, with more than one-third of the 700,000 Gulf War vets claiming
multisymptom illnesses associated with their military service.

The report also calls for a substantial commitment to improve identification
and treatment of multisymptom illness in Gulf War veterans. That would, of
course, first require that the Department of Veterans Affairs acknowledge
these syndromes as real disease.
http://www.usnews.com/science/articles/2010/04/12/gulf-war-syndrome-real-institute-of-medicine-concludes.html 
 

Second Opinion - In Reporting Symptoms, Don’t Patients Know Best? -

 
Unfortunately, there are doctors who DON'T think patients know best.  My medical records are filled with things the doctors *wish* I had said, in order to justify the diagnosis they wanted to make.  The things I did say -- the symptoms that would prove it's not depression -- aren't there.  "Inconvenient truth" if you will.

Helping doctor harassed; killing doctor allowed to keep practicing

 
Scroll down to the April 9, 2010 post

The hidden cost of chronic fatigue to patients and their families

 

 

Tuesday, April 13, 2010

Slightly Alive: My letter to APA on CSSD

 
 

National Underinsured Resource Directory

National Underinsured Resource Directory
The Patient Advocate Foundation - a national non-profit organization that seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability relative to their diagnosis of life threatening or debilitating diseases - has unveiled the National Underinsured Resource Directory, which is intended to help underinsured individuals and families locate important resources and seek alternative coverage options or methods to cover their healthcare needs.
To access The National Underinsured Resource Directory, visit: http://patientadvocate.org/help4u.php . Organizations that want to include this resource on their websites are invited to contact Erin Moaratty, Chief of External Affairs at PAF at (800) 532-5274 ext 1150 or erin.moaratty@patientadvocate.org.

Patient Advocate Foundation and its companion organization, the National Patient Advocate Foundation (NPAF), were founded on the principle that health care is a basic human need and shared social responsibility. Annually, PAF receives thousands of contacts requesting information and assistance via their toll-free hotline as well as online, with complete direct, sustained case management services provided to patients from all fifty states free of charge. For more information about PAF, visit www.patientadvocate.org or call toll free (800) 532-5274.

Hillary Johnson's latest blog post

 
 

Potential Risk to Blood Supply Probed - WSJ.com

 

I cannot see a place to make public comment, but there's an e-ddress at the end.  If you got CFS after a transfusion, you should definitely let them know. 
 
Or if, like me, your doctor told you not to donate and the blood bank wouldn't take you off the list because "the only virus we screen for is AIDS, so you can still donate", let them know that, too.
 
The smoking gun here is a letter received by a patient from the CDC (described in "Osler's Web") telling her not to donate blood while CDC was still insisting that we were just depressed menopausal women and it was not contagious.
 
 

Monday, April 12, 2010

Just a little butt-kicking going on! :)

 
 

News Sites Rethink Anonymous Online Comments - NYTimes.com

 
This has been a problem with CFS patients' blogs, too -- people hiding behind fake names to say incredibly rude and abusive things to patients.  For example, patients who can't even get out of bed being verbally abused for not having a job, with no thought given to who would hire someone who's that sick -- the problem is not that CFS patients don't want to work, but that employers refuse to hire us.