"We thought we were almost done with XMRV..."

"We thought we were almost done with XMRV..." Copyright (C) 2010 By Hillary Johnson, All Rights Reserved - OSLERSWEB.COM

 

The good news "NIH scientists, if there was any doubt a year ago, appear to understand what's at stake."

Help Wanted -- Quackologists Need Not Apply

Kati got fed up with the lack of adequate medical care.  So she posted an ad on
Craigslist.  I think this is just stunningly brilliant!  What a great Commando
Advocacy tactic!  Free, easy, takes 5 minutes. 
Tuesday, October 5, is one week before the kickoff of the CFSAC meeting. 
Wouldn't it be cool if we could all put ads in our local Craigslists on that
day, and then send a press release out announcing what we've done?
Anybody game?
 
New blog at
http://cfsuntied.com/blog2/2010/09/30/help-wanted-%e2%80%93-quackologists-need-not-apply-2/

 
Thanks, all!  And thanks Kati!
khalyal@yahoo.com
khaly@cfsuntied.com

 

* * *

Unfortunately, the quacks don't see themselves as quacks. 

 

When my long-time doctor died suddenly, I went to a respected local medical group advertising "innovative treatment".  Which is what CFS needs, right?  Their ads reassure the patient that the PCPs have hundreds of specialists they can and do consult with.  What they don't tell you is that not one of these hundreds of doctors knows that anti-depressants are useless against True CFS.

They repeatedly assured me that they are the doctors, they know what they're doing, and I went along with it for a while until I realized that they were intending to prescribe every one of the 300 available anti-depressants before they acknowledged that maybe what I had was not depression.  Then, over their objections, I enrolled myself in a clinical trial of sleeping pills, because what I really needed was something to help me sleep through the pain.

 

And when the sleeping pills helped, the quacks STILL didn't see that they were doing the wrong thing for me.  They came up with all sorts of excuses why anti-depressants, not sleeping pills, were the correct treatment.

 

 

National Disabilities Employment Awareness Month

Show your support for National Disabilities Employment Awareness Month by signing up for the Think Beyond the Label Twibbon on Facebook and Twitter. To get yours, click the "Get Labeled!" tab

 

"When you can't come back" by Dave and Jan Dravecky

The media are captivated by stories of people who fought back against a medical condition and now do difficult things like climb Mount Everest or run marathons.

 

They're not so keen on stories of people whose medical condition doesn't allow us to be SuperCrip like that.

 

For those unfamiliar with the story, Dave Dravecky was a professional athlete whose pitching arm was amputated due to cancer.  Now, if the media had their way about it, he'd teach himself to pitch with the other arm and come back to win awards.  He didn't.  He went on, instead, to be an inspirational speaker and author.

 

On pp. 41-42 of the book, he talks about a child he met at Sloan-Kettering before his surgery.  "As a mother, ... you long for heaven; then his suffering would be over with."  "I came away from my time with that boy and his mother with an enormous sense of sadness.  I was sad that we lived in a world where suffering was so ruthlessly impartial.  I longed for a world where good people were rewarded with health and happiness, where bad people were the ones who got the terminal diseases and died young."

 

And it certainly would be nice if the mean people who taunt CFS patients, bully them, verbally abuse them, would be the ones who got sick and the many warm, wonderful people I've met with this disease were miraculously cured, but that's not the way it works.

 

"On the first floor of Sloan-Kettering there is a mural .... One of the quotes on the mural is from a former president of the research center, Dr. Lewis Thomas: We are now beginning to learn how to ask very deep questions, and that is an immense step forward.  The answers will come inevitably, in their own time; that side of science is the easy part.  The hardest of all the tasks in research is to ask the right questions. ... I decided not to get mired in the question Why.  Instead I decided to ask 'What good can come out of this so that others may benefit?'"

We finally have researchers who are asking the right questions on CFS.  (God bless the Whittemores and Dr. Judy!)  As I said to Andrea Whittemore when we finally met face-to-face after months of internet communication, "thank you for getting sick."  The Whittemore family definitely opted for "what good can come out of this so that others may benefit?" and millions of patients are glad they did.

 

While he was in the hospital, Dave Dravecky was given a lot of books, one of which was by Albert Schweitzer, who commented "no explanation of the evil in the world could ever satisfy me ... I always held firmly to the thought that each one of us can do a little to bring some portion of [the misery] to an end."

 

Personally, I don't have the scientific knowledge to solve the CFS conundrum; I'll leave the research to Dr. Judy and her excellent staff.  But everything I did in life to this point led up to being well-prepared to be an activist.  I was a journalist, politically active, well-read and well-connected.  I may not know a Petri dish from a dessert cup, but I can write and I can lobby and I can educate.  And by telling my story, I can maybe bring someone else's misery level down by letting them know that someone understands.  There are others of us who've walked the same road, gotten the same abuse, and banded together to fight it.  I can't tell you how many times I've heard the story -- as has the author of The Spoon Theory -- that friends and family didn't believe the patient until they read in someone else's words the same thing their patient was trying to communicate.  It's not just their lazy Susan exaggerating for sympathy, but here's this published author saying the exact same things about how the disease affects her.

 

On pp.70-71, Dave talks about a letter he received from someone lecturing him that he'd be healthy if his faith were stronger -- how many times have we all heard that?  "What struck me is that this guy had so many answers for my life, and he didn't even know me.  He was a complete stranger, yet he was confident he had a road map from God for my life."  I've gotten the lecture, too, but over the years since getting sick, my watchword has become "God answers all prayers -- sometimes the answer is No."   Begging to go back to my former career may be my plan, but maybe it's not God's plan.  As I said, everything I did before prepared me to be a CFS activist.  Maybe, just maybe, God wants me flat on my back, touch-typing on a computer with my eyes closed against light sensitivity, educating people.

 

At first, I tried going to church; it made me sicker.  Not just the physical exertion of getting to church meant that I might not make it through the week at work, but also the many people who wouldn't let a little illness keep them from attending church.  My immune system was struggling, and being in a confined space with that many germs guaranteed I was going to come down with something.  Every single week.  I finally came to the realization that if God wanted me to go to church, He would put a protective bubble around me so I wouldn't get sick and have to take Wednesday, Thursday and/or Friday off work every week.  Or he'd provide another source of income so I didn't have to worry about losing my job from being out sick half of every week, but even if my doctor found some way to get me onto Disability (CFS alone was not an acceptable diagnosis to support a Disability claim in those days), the payments were approximately equal to the rent -- nothing left for food or utilities, so Disability was not a suitable "alternate source of income".  Unless and until one of those protections came about, I had to accept that I was not supposed to go to church; I was healthier if I stayed home in bed resting on Sunday mornings.

 

The "faith healer" praying over me accomplished nothing; neither did a friend's entire convent praying for me to be cured.  Clearly, God's answer to all that praying was No, and it didn't matter how much faith or how many prayers were sent up and candles lit.  God had something else in mind that was not "cure" and I just had to live with it.

 

The Post-Exertional Relapse means that it would be foolhardy for me to even try to match up to the media darling SuperCrip who takes up marathoning or mountain climbing -- if it doesn't kill me outright, it might render me permanently bedridden.  All I can do is be the best me that I can be, maybe not with flashy physical stunts that attract the attention of the media, but with the talents I do have left. 

 

And one of those is having the backbone to tell the world that I am not going to kill myself trying to be SuperCrip.  Buzz off, I will do what I can without endangering my health, and no more.  If that means I don't go back to work full-time, well, then I don't go back to work full-time.

 

The part of me that danced all night and hiked for miles and played hours of baseball and volleyball is amputated as surely as Dravecky's arm.  I "can't come back" in those ways.  But I can still write and type and advocate, and that's what I'm going to do.  With the assistance of the excellent researchers at Whittemore Peterson, I'm hopefully going to feel well enough to write a book about my journey with CFS and be interviewed on radio and TV about it.  If not, I'll continue with this blog and forego the media spotlight.  The important part is that I do my best to alleviate suffering by letting other patients know they're not in this alone.

 

 

 

 

 

Life as we know it

Unlike "Life As We Know It" with Katherine Heigl and Josh Duhamel, life as WE know it is no romantic comedy. Statistically, 3/4 of marriages affected by chronic illness break up and the proportion is closer to 90% when it's the wife who gets sick; most husbands don't want to be caregivers. While there are patients who have gotten married -- some even while they are sick enough to be in a wheelchair -- the majority of us cope entirely alone because most men don't want to be saddled with a sick wife. Not even one as pretty as Katherine Heigl.

For most of us, there's no romance and the only comedy is when you laugh with your fellow patients about the silly things your symptoms make you do and say -- like the day I was involved in a half-hour conversation with several other patients, all of whom had at least a Bachelors degree, and we kept referring to "thing" because we all knew what we were talking about and none of us could think of the word. Finally another person joined the conversation, provided the word, and got a round of applause.

Living with CFS is closer to a horror movie. You wake up feeling like you should be dead, but no one believes you that you're even a little bit sick. You'll be abused, degraded, tortured, bullied. Doctors will tell you they can't find anything wrong and will ignore your actual symptoms to tell you that you have psychiatric problems (depression, anxiety, hypochondria and attention seeking are the most popular ones). But, as Dr. Starlanyl says, "if all tests are normal, the right tests haven't been done yet." Here are some tests that might be abnormal:
http://cfs-facts.blogspot.com/2008/02/top-10-tests-that-should-be-done.html

The test for XMRV/Human Gamma Retrovirus is still pretty pricey, but a C-Reactive Protein test is affordable and will prove that you have some sort of infection/inflammation/virus, which should convince the doctor that it's not just hypochondria or a figment of your imagination. Once you have some proof that your problem is physical in nature, doctors may be more willing to think outside the box and find some explanation for your symptoms. Here's the "complete" symptom checklist:

http://cfs-facts.blogspot.com/2008/01/cfsfibro-symptom-checklist.html

and some alternate diagnoses your doctor may want to investigate:

http://cfs-facts.blogspot.com/2007/02/1001-other-possibilities.html

At first, it may appear that the list includes "every symptom under the sun", which is what leads some people to conclude you have to be faking, but in fact, a neurologist will recognize a pattern. Which is why the research facility in Reno, Nevada is formally known as Whittemore Peterson Institute for Neuro Immune Diseases.

CFS is contagious and caused by a virus, but as yet, there's no vaccine and no cure, which means that anyone can get it; someone you love could be the next victim. But anyone can help find the treatment/cure -- add this link to your bookmarks and use it every time you need to do a web search. At no cost to you, cash will be donated to fund research.

iGive : Raise money for Whittemore Peterson Institute, every time you search t

You can also go to the WPI official website http://www.wpinstitute.org/ and make a donation. That could make for a happy ending right out of Hollywood. The patients are miraculously cured, rise from their beds, and return to real life, falling in love, getting married, becoming parents, playing with sons and daughters who've become accustomed to mom (or dad) spending most of his/her time in bed not feeling well.

A lesson from Mom: Don't be a 'good' patient - CNN.com

A lesson from Mom: Don't be a 'good' patient - CNN.com

 

1. Ask lots of questions. If you don't understand something, ask for clarification, and if you still don't understand, ask again. The doctor or nurse might be visibly annoyed, but that shouldn't stop you. Remember, your health depends on your ability to comprehend what the doctor is telling you.

2. Don't worry whether your doctor likes you. If you hesitate to do anything that might upset the doctor, such as asking lots of questions, you're putting your health in jeopardy. While it's a natural inclination to want to be liked, your health comes first and your popularity second.

3. Remember that this is a business transaction. You're paying the doctor for a service; you're not in a popularity contest. Of course, you're respectful of the doctor, just as you're respectful to a waitress or your car mechanic, but you don't owe it to your doctor to be the perfect patient.

* * *

If you know you have CFS and the doctor doesn't want to prescribe anything but anti-depressants, stand up to him.  Your health is more important than his ego.

Replies to Psychiatric misdiagnoses in patients with CFS

Replies to Psychiatric misdiagnoses in patients with chronic fatigue syndrome — J R Soc Med Sh Rep

 

BRAVO!!!!!!

CFS Chronicles: It's the Virus Stupid!!

CFS Chronicles: It's the Virus Stupid!!

 

CFS Brainwashing Test

Just to let you know that version #7 of the 'CFS brainwashing test'
has been completed. Since the file is too long to be posted (12
pages), it is available online. The URL is,
    http://www.me-net.combidom.com/quack/quack13.htm

In this 7th update, based on ~1200 files on CFS quackery, almost
all CFS quack tests, CFS therapies, and other CFS myths that have
been debunked by sciensists are explained. There even has been
found a secret message in the name 'myalgic encephalomyelitis'
itself - it is an *anagram of something else*.

The scenario is explained and so are the techniques to misled
patients and their doctors. Everything is there. The CFS quackery
scenario has been demythologized, CFS being reduced to what it
really is.


Marc Fluks

 

 

 

Better E-ddress for Advocacy

 

Rivka Solomon, one of the patients who met with the NIH officials before
the XMRV meeting and whose statement you read in ProHealth, advises me
of the following:

    * *A better email address to use for Director Francis Collins is
      collinsf@od.nih.gov .
      *
    * *Add to the list of areas of concern the need to use the Canadian
      Consensus Criteria for all ME/CFS research.*


Thanks for the information Rivka and your service on behalf of all of us.

Pat Sonnett on behalf of the
Miami CFIDS Support & Advocacy Group

Improved Access to Clinical Trials

 

ME is listed by the  National Association of rare disorders



  NORD Press Release
House Passes Improving Access to Clinical Trials Act
Washington DC-----In a victory for rare disease patients and families, 
the U.S. House of Representatives yesterday passed the Improving 
Access to Clinical Trials Act (I-ACT).  The bill, which passed the 
Senate August 5, goes now to the White House where President Obama is 
expected to sign it.

"This is a victory for the rare disease community," said NORD 
President and CEO Peter L. Saltonstall.  "This legislation will 
support the development of new therapies by removing a barrier that 
might keep patients from participating in important research studies."

The legislation changes the eligibility requirements for Social 
Security Supplemental Income (SSI) and Medicaid so that compensation 
of up to $2,000 for participating in clinical trials won't be 
considered income in SSI and Medicaid determinations.

NORD has worked with the Cystic Fibrosis Foundation and other patient 
advocacy groups in support of this legislation.  NORD and several of 
its Member Organizations signed a recent letter on behalf of the 
Improving Access Act sent to House Speaker Nancy Pelosi (D-CA) and 
House Minority Leader John Boehner (R-OH).

"We're grateful to our Member Organizations for their support on this 
important issue," Saltonstall said.  "This is one more reminder that—
when we speak together—we are able to bring about change that improves 
the lives of patients and families affected by rare diseases."

____________________________

Contact:
Mary Dunkle
mdunkle@rarediseases.org

ADVOCACY ALERT

 

Permission to copy, forward and repost is hereby granted.
***

ADVOCACY  ALERT:

Write letters to Director Collins before the CFSAC meeting scheduled for
Oct. 12-14, 2010, preferably within the next week so there will be ample
time to forward them to the appropriate parties.

Francis S. Collins, M.D., PhD.
Director, National Institutes of Health
Francis.Collins@nih.hhs.gov


ProHealth recently published an article on the September 7th meeting of
the three high-up NIH officials with a group of nine ME/FS patients and
their families and Dr. Dan Peterson prior to the XMRV conference. 
Please refer to that posting at
www.prohealth.com/library/showarticle.cfm?libid=15587 for detailed
information.  Portions of that meeting will be referred to below.  Dr.
Michael Gottesman, Chief of NCI's Laboratory of Cell Biology and
Director of the NIH Office of Intramural Research, indicated at the
meeting that letters should be written stating our specific concrete
grievances and concerns and sent to the Director Collins' office where
he promised they will be addressed and forwarded to the right person
with the Director's office.  We need to take advantage of this
opportunity and send letters to Director Collins before the next CFSAC
meeting so the NIH representatives at the meeting will be aware of them.

You will note in the article that a number of areas of concern were
addressed by the patients.

    * The need for Trust Building.
    * The need for Funding (they suggested $100 million over two years).
    * The need for Centers of Excellence funded by the NIH.
    * The need for Funding for Fast-Track Clinical Trials for Treatments.
    * The need for Attention to Pediatric CFS.

In addition to the items listed above, the NIH puts in the Program
Announcement the sorts of research it would be willing to fund and the
last Program Announcement didn't include clinical trials.  We need to
request that they be included.

    * It is critical that any future NIH Program Announcement include
      translational, phase 1, phase 2 and even phase 3 clinical trials.

You might also want to refer back to your recent CFSAC public testimony
(if you prepared one) and address some of those issues which may include
some of the above items as well as others, i.e.:

    * Difficulty in being approved for or in receiving disability insurance.
    * Difficulty in obtaining access to health care for CFS.

You obviously don't need to cover every suggested item, just the ones
you feel strongly about.  It is very important, however,  that you take
the time to write Director Collins to make sure he knows we're paying
attention to what's going on.  Dr. Gottesman indicated to the patients
and Dr. Peterson that they would meet again in the future, possibly
within three months, so this is an excellent opportunity to make our
concerns known, not only for the CFSAC meeting but also the possible
future patient meeting.

Thank you for participating in this letter-writing campaign.  Once
again, we have an opportunity to be heard, but we are only effective if
enough small voices join together to become a loud roar .  Please don't
let this opportunity slip away.


Pat Sonnett on behalf of
Miami CFIDS Support & Advocacy Group

 

No Meeting of Minds on XMRV’s Role in Chronic Fatigue, Cancer

No Meeting of Minds on XMRV's Role in Chronic Fatigue, Cancer
17 SEPTEMBER 2010 VOL 329 SCIENCE
www.sciencemag.org


BETHESDA, MARYLAND - For the past few years, researchers have been
tantalized by reports linking a new retrovirus to some cases of
prostate cancer and, more recently-and more controversially-the
mysterious illness chronic fatigue syndrome (CFS). With the excitement
over discovering a possible new cause for these diseases, however, has
come skepticism, as some groups have found scarcely a trace of the
novel virus, called XMRV. Many hoped a 1.5-day workshop* here last
week would help resolve the controversy. Instead, the field remains
mired in "a zone of chaos," concluded co-organizer and retrovirologist
John Coffin of Tufts University in Boston and the National Cancer
Institute (NCI) in Frederick, Maryland. "We don't have agreement on
almost anything."

Still, in spirited discussions, sometimes frustrated-sounding
researchers had a chance to air their findings and discuss ways to
move forward. At the meeting Francis Collins, director of the National
Institutes of Health, announced that NIH is funding a new study that
could help resolve whether the presence of XMRV varies with geography
or whether differences in how labs prepare and test samples explain
the varying results.

XMRV, which resembles a mouse retrovirus, was discovered in 2006 in a
group of men with a hereditary form of prostate cancer. Some groups
have since confirmed the finding, but others, particularly in Europe,
have not. Then a year ago, a report in Science linked XMRV to CFS, a
disease in volving fatigue and muscle pain mostly in middle-age women
(Science, 9 October 2009, p. 215). Although patient groups were
ecstatic to finally have a potential cause for what some people
consider not a true disease, the study, led by Judy Mikovits of the
Whittemore Peterson Institute (WPI) in Reno, Nevada, met with doubts
as other groups failed to confirm it (Science, 15 January, p. 254).

This summer, scientists at the U.S. Centers for Disease Control and
Prevention (CDC) found no XMRV in blood from CFS patients, while a
team at the Food and Drug Administration (FDA) and NIH reported
finding genes from a group of viruses closely related to XMRV, dubbed
MLV-related viruses, in 87% of 37 blood samples from CFS patients and
in 7% of healthy people (Science, 27 August, p. 1000). Differences in
virus-detection methods or in how patients were diagnosed or recruited
could help explain the discrepancies, the two sets of authors
suggested.

At last week's workshop, 220 scientists and others ran through many of
the published studies, as well as some new unpublished ones. For
example, Mikovits has now found XMRV in patients in England with CFS.
She defended her group's original findings: "We have independent
confirmation from three groups," she said at the workshop. But some
participants raised concerns about possible sources of stray mouse
DNA, from knives for slicing tumors to the heparin sometimes used to
stabilize blood samples. Tufts immunologist Brigitte Huber reported
that her lab initially found almost no XMRV in CFS patient samples,
but when they tested more samples from patients and healthy people
prepared a different way, many were positive. These samples turned out
to contain endogenous mouse retrovirus DNA, probably from a
contaminated reagent, said Huber: "It's a false positive in our
hands."

One underlying issue is that the polymerase chain reaction assay used
to detect XMRV-the assay copies and amplifies pieces of DNA-is so
sensitive that it can detect extremely small traces of viral
sequences, the amount in a milliliter of water from a swimming pool in
which a drop of mouse blood has been mixed, Coffi n said. This makes
it easy to pick up contaminant mouse viral DNA. Even if XMRV is
present in some tumors, the reported levels are so low that it's
unclear how it could contribute to the development of cancer, says
pathologist Angelo De Marzo of Johns Hopkins University in Baltimore,
Maryland. "The data [are] very noncompelling," says De Marzo, whose
lab, working with NCI's Alan Rein, failed to find XMRV in nearly 800
prostate tumor samples.

Some meeting participants said the only way to establish that XMRV
actually causes CFS and isn't simply a "passenger" virus that doesn't
contribute to the illness is to treat CFS patients with antiretroviral
drugs. Coffin cautioned that it would be "premature" to do so without
an assay to monitor the amount of XMRV in a patient's blood, as is now
done with AIDS patients on antiviral therapy. But if such a test is
developed, "I would not be averse to doing very small studies under
tightly controlled clinical conditions," he said.

Hoping to figure out what's going on, a federal working group
involving labs at FDA, CDC, WPI, and elsewhere has compared results
for blood samples to which various amounts of XMRV had been added.
(All six labs detected it.) The group has also tested four WPI samples
from CFS patients but isn't ready to discuss the results because
"we're still confused by them," says Coffin, who is part of the
working group.

More answers could come from the study Collins announced. National
Institute of Allergy and Infectious Diseases Director Anthony Fauci
has asked Columbia University epidemiologist W. Ian Lipkin to collect
blood samples from 100 CFS patients from four parts of the United
States and 100 healthy people and send blinded samples to the FDA,
CDC, and WPI labs for testing. "We're interested in settling a
discrepant observation," Fauci says.

Chaos may still reign, but Coffin thinks order may emerge over the
next year. If nothing else, he says, "people left the meeting talking
to each other when they weren't always before. I hope that will
continue."

–JOCELYN KAISER

*1st International Workshop on XMRV, 7–8 September 2010, Bethesda, Maryland.

Abstracts and select presentation slides from the 1st XMRV Workshop

The abstracts and select presentation slides from the 1st XMRV
Workshop have been made available online.

Main page-
http://www.virology-education.com/index.cfm/t/Workshop_material/vid/1A5D65BD-FB8B-8AE1-5E10829372D080B4

Abstracts-
http://regist2.virology-education.com/abstractbook/2010_8.pdf

Available presentations-
http://regist2.virology-education.com/1XMRV/7_September.html
http://regist2.virology-education.com/1XMRV/8_September.html

 

 

The Whittemore Peterson Institute: Building Bridges

 

The Whittemore Peterson Institute: Building Bridges through Private and
Public Sector Collaboration


Annette Whittemore*
*

*
*

The Whittemore Peterson Institute's (WPI) publication of its ground-breaking
study on October 8, 2009, of the link between a cancer-related retrovirus,
XMRV, and patients with myalgic encephalomyelitis/chronic fatigue syndrome
("ME/CFS") brings a desperately needed legitimacy to a complex yet
controversial and misunderstood disease
*(1<http://molinterv.aspetjournals.org/content/10/3/120.long#ref-1>
)*. News of this significant association brought hope to millions around the
world who have suffered in silence from its devastating effects. Perhaps,
just as important, the discovery of XMRV infection in humans allows the
medical world to construct a testable hypothesis of how XMRV may cause or
contribute to illnesses across a wide spectrum of chronic inflammatory
diseases and cancers and new paradigms of treatment and perhaps prevention.


That the discovery happened in just three years of a small research
institute's existence1<http://molinterv.aspetjournals.org/content/10/3/120.long#fn-1>is
almost as amazing as the extraordinary scientific work. This is the
story
of how and why the Whittemore Peterson Institute came to be. It is a story
of multiple collaborations at every level, revealing a blueprint for other
groups of dedicated scientists, doctors, and philanthropists to create
greater progress through unique and selfless partnerships across
nontraditional boundaries. Like other philanthropic endeavors, it began as
an idea evidenced through personal suffering and acted upon after all other
avenues had failed.


The personal decision to commit time and money to build an institute for
patients with neuroimmune diseases came from a desperate need for medical
solutions to a disease that had been destroying our daughter's life for over
twenty years. We were also faced with the reality that experienced
physicians were retiring without passing on their knowledge of ME/CFS to new
physicians (Box
1<http://molinterv.aspetjournals.org/content/10/3/120.long#boxed-text-1>).
In addition, the existing medical establishment lacked both knowledge and
medical tools to effectively treat patients who suffered the debilitating
effects of this neurological
disease2<http://molinterv.aspetjournals.org/content/10/3/120.long#fn-2>.
Around the world, those who suffer with ME/CFS have been told that their
physical disorder is a manifestation of a psychiatric disease. Subsequently,
these patients may then be denied medical support by their government-run
health care programs.

Full article can be found at:
http://molinterv.aspetjournals.org/content/10/3/120.long

Komaroff Webinar Available

http://www.cfids.org/webinar/series2010-past.asp#14

CFS & The Viral Connection
Speaker: Anthony Komoroff, M.D.
Date: Thursday, September 16, 2010

Recording of presentation:
http://www.cfids.org/webinar/091610.wmv
Slides of presentation:
http://www.cfids.org/webinar/slides-091610.pdf

CFS researcher and clinician Dr. Anthony Komaroff of Harvard Medical
School and Brigham and Women's Hospital explored some of the
infectious agents and illnesses connected to CFS, including
Epstein-Barr Virus (EBV), Human Herpesvirus (HHV)-6, Q-fever, Ross
River virus, Lyme Disease, Parvovirus, Borna disease virus, Influenza
A (H1N1) virus (swine flu), retroviruses, enteroviruses and
mycoplasmas.

Cheney's notes on XMRV

 

From MEActionUK Yahoo group- "Rich Van Konynenburg has posted this to
a few groups tonight. Permission to re-post as long as Dr Cheney is
acknowledged."
http://health.groups.yahoo.com/group/MEActionUK/message/63373

==============================================

From Dr Cheney

I attended and was a poster presenter at the recently completed XMRV
conference at the NIH.  It was fascinating and I took perhaps 30 pages
of notes.  The bio-political undertones were also intense but I have
to say that the presentations of XMRV association with CFS (4
presentations) were much stronger than the presentations of negative
XMRV associations with CFS (4 presentations).  They were stronger
specifically because of the multiple methods they employed and not
just PCR.

Very interesting in this regard were comments by the head of the blood
working group at the NIH who is trying to determine the cause of the
discrepancy.  He hinted strongly that it is the way blood is collected
and processed for nucleic acids and not the detection methods for XMRV
itself that divides the two groups.

In an NIH blood group sponsored study, a group comparison study with
both camps represented detect successfully, in a blinded fashion, XMRV
spiked buffer in varying concentrations but they nevertheless divide
into two camps when clinical blood samples are taken and processed for
XMRV nucleic acids.  Using only PCR, one camp sees ~80% positive in
CFS and one camp sees 0% positive in CFS

There is no one in between and no middle ground between the two groups
which was striking and noted by Joe B. who was also in attendance.
There is no evidence by mouse mitochondrial DNA probes, that any of
the positive associations were
contaminated.  However, one of the negative association speakers found
non-human mouse virus MLV contamination perhaps localized to heparin
tubes used for blood collection.  Heparin is often produced in China
where mice are common as pets.
When the contamination was cleared, she found no association of XMRV with CFS.

I also wanted to share some other highlights of the conference  Among
them, a very interesting presentation was made by a group connected to
Abbott Labs that infected male and female Macaques (monkeys closely
related to man) with human XMRV to see what happens and where the
virus ends up or concentrates itself.

Within a few weeks, the virus was largely cleared from blood where it
was initially injected in high concentration.  Even antibody response
was lost over time (months) as the infection was largely removed from
the blood and virus did not appear to persist in the blood.
Apparently, there was not enough viral antigen to keep antibody levels
high or persistent.

However, the virus was found more or less in every organ, at least
initially, and thought to be carried around the body in T-cells and
B-cells during the active phase of infection.  This is consistent with
the ubiquitous nature of the Xpr1 receptor used by the virus to gain
access to almost all cells of the body. Organs where the virus was
initially most concentrated appeared to be lymphoid organs such as the
spleen, liver and mesenteric nodes of the GI track and in sex organs
and in particular the epithelium of the prostate gland where it was
highly concentrated at first and then the infected cells later
apoptosed and infection disappeared from the epithelium and then the
virus was more likely to be seen in the interstitial cells in the
stroma or matrix of the prostate, especially the fibroblasts which may
be one reservoir in all the various organs that are initially
infected.  The virus was also found in the epithelium of the cervix in
the female macaque.

Over time, the infections of various organs tended to be cleared by
either immune mechanisms but especially by restriction enzyme systems
present in almost all human cells that hypermutate the virus so it
cannot persist as a competent infectious agent. Indeed, mutated viral
strains are almost always found in CFS cases by both Judy Mikovits at
WPI and Frank Ruscetti at NCI.  Sometimes this makes the virus
incompetent as an infectious agent and sometimes has no effect on
infectiousness.

Very interesting is that another cell that appears to be a reservoir
of XMRV other then fibroblasts within tissue stroma are tissue
macrophages  The pulmonary alveolar macrophages were absolutely loaded
with XMRV virus and other tissue macrophages could also be a potential
reservoir in other tissues as well, especially in the GI tract, sex
organs and sinuses.  Tissue macrophage reservoirs would be analogous
with HIV as well.

It would seem that bronchial secretions, nasal secretions and sex
organ secretions as well as feces and urine are well positioned to
help the virus to spread itself to other macaques, especially if
activated.

As for activation of more or less low level or quiescent but
persistent infectious virus, there seem to be several mechanisms.  The
virus has both a glucocorticoid response element (GRE) and an androgen
response element (ARE) in its promotor region.  It also has binding
regions for NK Kappa B proteins in its response elements.  In any
organ with high levels of local androgenic
stimulation such as the prostate and perhaps during puberty, the virus
could activate. No mention was made of the effect of the predominant
female sex hormones but estrogen is the equivalent androgen-like
hormone in females.

As for the GRE in the promotor region, severe stress will activate the
virus or the use of glucocortocoid hormones and perhaps any precursor
steroid hormone such as pregnenolone.  As for the NF Kappa B sites,
any strong immune response with an associated cytokine storm would
also be a strong stimulant and such stimulation certainly occurs in
the bronchial tree which is frequently stimulated with antigen,
especially during allergy season.

Perhaps most interesting of all was what happened with the injection
of a bolus of foreign peptides into macaques that had apparently
completely cleared the virus from blood.  There was a huge
reactivation of infectious virus in the blood proving that latent but
persistent virus is just below the surface and that XMRV infection
cannot be completely cleared from all reservoir sites. The peptide
injection mimics an acute infection (? borrelia or the flu), an
immunization or even acute mold exposure.

The effect of XMRV infection over time was not studied in the macaque
but a similar gammaretrovirus called Feline Leukemia virus (FeLV) has
been well studied in cats for decades.  I will in another post
describe a most interesting talk at this conference by a veterinarian
on the life history of infection by a gammaretrovirus in cats.

Paul Cheney, M.D.

XMRV and Ampligen

This is the basic info:
=======================================================================
"The XMRV antibody positive cohort had a greater relative percentage of
subjects showing a >25% increase in ETT with Ampligen(R) treatment compared
to placebo than the XMRV antibody negative cohort. The results also suggest
that the XMRV antibody negative subjects with CFS have a lower activity
level and a reduced ability to complete normal daily activities at
baseline."
=======================================================================

http://www.globenewswire.com/newsroom/news.html?d=200987

Source: Hemispherx Biopharma, Inc. 

Hemispherx Biopharma to Present New Retrovirus (XMRV) Data at 1st
International Workshop on XMRV and Chronic Fatigue Syndrome (CFS)

Retrovirus Positive CFS Patients Show Enhanced Response to Ampligen(R), an
Experimental Therapeutic, Relative to XMRV Negative Group

BETHESDA, Md., Sept. 8, 2010 (GLOBE NEWSWIRE) -- Hemispherx Biopharma, Inc.
(AMEX:HEB) will present new clinical data on the possible
inter-relationships of XMRV positivity/chronic fatigue syndrome/AmpligenR
responsiveness at the 1st International Workshop on XMRV being held at the
National Institutes of Health in Bethesda, MD, on September 7 and 8, 2010.

CFS is a severe disorder consisting of profound fatigue and a variety of
other debilitating symptoms that affects up to 4 million Americans.
Recently, DNA was identified from a human gamma retrovirus (XMRV) in 67% of
CFS subjects. Evidence also suggested that approximately 50% of the CFS
subjects mounted a specific antibody response against XMRV (Science 326,
585-589 (2009)). The objective of this study was to compare demographic
parameters and health/performance status of XMRV antibody positive vs.
negative CFS subjects enrolled in a Phase III clinical trial evaluating the
safety and efficacy of a toll-like receptor 3 agonist, rintatolimod
(PolyI:PolyC12U, AmpligenR). The response to AmpligenR with regard to the
primary endpoint, treadmill exercise tolerance testing (ETT), in this
population was also evaluated.

Two-hundred-eight (208) evaluable subjects, who met the original (1988) and
revised (1994) Centers for Disease Control criteria for CFS, participated in
this randomized, placebo-controlled, double-blinded, multicenter study. Only
severely debilitated patients with a Karnofsky Performance Scale between
40-60 were selected for this study. The primary endpoint was exercise
treadmill duration. Subjects received AmpligenR (200-400 mg) or an
equivalent volume of placebo (saline) twice weekly by intravenous infusion
for 40 weeks. Baseline (or earliest available specimen) serum samples from
all 208 subjects were analyzed for antibodies directed against XMRV.

The XMRV antibody positive cohort had a greater relative percentage of
subjects showing a >25% increase in ETT with AmpligenR treatment compared to
placebo than the XMRV antibody negative cohort. The results also suggest
that the XMRV antibody negative subjects with CFS have a lower activity
level and a reduced ability to complete normal daily activities at baseline.
If validated as a relevant basis for targeting the XMRV positive CFS patient
sub-population, the observed response advantage of the XMRV may translate
into needing a smaller sample size for future research using a
placebo-controlled parallel design to obtain 80% power (á=0.05): 216 XMRV
antibody positive subjects vs. 330 XMRV antibody negative subjects.
Additional studies to further evaluate XMRV in this CFS population are
currently underway.

About Hemispherx Biopharma

Hemispherx Biopharma, Inc. is an advanced specialty pharmaceutical company
engaged in the clinical development of new drug entities for treatment of
seriously debilitating disorders. Hemispherx's flagship products include
Alferon N InjectionT (FDA approved for a category of sexually transmitted
diseases) and the experimental therapeutics AmpligenR and Alferon LDOT.
AmpligenR represents experimental nucleic acids being developed for globally
important debilitating diseases and disorders of the immune system.
Hemispherx's platform technology includes agents for potential treatment of
various severely debilitating and life threatening diseases. Hemispherx has
an extensive number of patents comprising its core intellectual property
estate and a fully commercialized product (Alferon N InjectionT).  The
Company wholly owns and exclusively operates a GMP certified manufacturing
facility in the United States.  For more information, please visit
www.hemispherx.net

Information contained in this news release, other than historical
information, should be considered forward-looking and is subject to various
risk factors and uncertainties. For instance, the strategies and operations
of Hemispherx involve risk of competition, changing market conditions,
change in laws and regulations affecting these industries and numerous other
factors discussed in this release and in the Company's filings with the
Securities and Exchange Commission. Any specifically referenced
investigational drugs and associated technologies of the Company (including
AmpligenR and AlferonR LDO) are experimental in nature and as such are not
designated safe and effective by a regulatory authority for general use and
are legally available only through clinical trials with the referenced
disorders. The forward-looking statements represent the Company's judgment
as of the date of this release. The Company disclaims, however, any intent
or obligation to update these forward-looking statements. The planning,
completion, results or submission of clinical trials do not imply that any
study product will ever be approved commercially for the studied or other
treatment indications.

CONTACT:  Hemispherx Biopharma, Inc.
          Company/Investor Contact:
          Dianne Will
          518-398-6222 begin_of_the_skype_highlighting
518-398-6222      end_of_the_skype_highlighting
          ir@hemispherx.net

Oct 17 New Jersey Conference

 

THE NEW JERSEY CHRONIC FATIGUE SYNDROME ASSOCIATION

and

MONMOUTH MEDICAL CENTER

Co-host



NJCFSA 2010 Fall Conference



ME/CFS: New Perspectives in Research, Advocacy, Education and Disability



The Sheraton Eatontown Hotel Conference Center

Eatontown, New Jersey

Sunday October 17, 2010



Program



11:30 -12:30 pm Registration, exhibits and buffet lunch



12:30 - 12:45 pm Introduction & Welcome: Kenneth Friedman, Ph.D



Moderator: Malcolm Schwartz, DO



12:45-1:45 pm Judy A. Mikovits, Ph.D. : " XMRV, a New Human Pathogen in
CFS?"



1:45-2:30 pm James M. Oleske, M.D.,M.P.H.: "Listening to and Learning From
the Testimony of Patients with CFIDS at the CFSAC."



2:30-2:45 pm Coffee, tea and beverage break



2:45-3:00 pm Presentation of Awards



3:00-3:45 pm Susan M. Levine M.D.: "New Insights in CFS Research and
Education Policy."



3:45-4:30 pm Barbara Comerford Esq.: "Overcoming the Many Legal Challenges
for CFS Patients: From Education Law to Obtaining Disability Benefits."



4:30-5:00 pm Question and Answer Panel Session-all speakers



Monmouth Medical Center relies upon faculty in its CME Program to provide
educational information that is objective and as unbiased as possible. In
accordance with the nationally accepted guidelines, faculty is asked to
indicate any commercial relationship that might be perceived as a real or
apparent conflict of interest. Monmouth Medical Center is an approved
provider of continuing nursing education by New Jersey State Nurses
Association, an accredited approver, by the American Nurses Credentialing
Center's Commission on Accreditation. (P91-12/2007-2010)



This activity has been approved for AMA PRA credit. Nursing contact hours
have been applied

CFSAC videocasts October 12/13/14

 

Chronic Fatigue Syndrome Advisory Committee (CFSAC) October 2010 - Day 1
View event: You will be able to view the event at
http://videocast.nih.gov when the event is live.
http://videocast.nih.gov/summary.asp?live=9505
Air date: Tuesday, October 12, 2010, 8:30:00 AM
Time displayed is Eastern Time, Washington DC Local
Description: Science Day will be a CFSAC hosted series of
presentations on Chronic Fatigue Syndrome (CFS). Topics will include
etiology,host factors, and immunologic factors associated with CFS as
well as quality of life issues.
-
Chronic Fatigue Syndrome Advisory Committee (CFSAC) October 2010 - Day 2
View event: You will be able to view the event at
http://videocast.nih.gov when the event is live.
http://videocast.nih.gov/summary.asp?live=9506
Air date: Wednesday, October 13, 2010, 9:00:00 AM
Time displayed is Eastern Time, Washington DC Local
Description: This is a formal advisory committee meeting with CFSAC
members. An agenda will be provided at a later time.
-

Chronic Fatigue Syndrome Advisory Committee (CFSAC) October 2010 - Day 3
View event: You will be able to view the event at
http://videocast.nih.gov when the event is live.
http://videocast.nih.gov/summary.asp?live=9507
Air date: Thursday, October 14, 2010, 9:00:00 AM
Time displayed is Eastern Time, Washington DC Local
Description: This is a formal advisory committee meeting with CFSAC
members. An agenda will be provided at a later time.

An Open Letter To Those Without Invisible Disability Or Chronic Illness

An Open Letter To Those Without Invisible Disability Or Chronic Illness … | Not Done Living

 

Homage to a Homager | Herdisms Blog

A CFS Homage to a Homager | Herdisms Blog

 

John's cartoon is half-right.  I feel like advocacy is a Sisyphan task -- not just the halt carrying the lame, but that no matter how much I do, there's more to be done.  Always one more phone call to be made, one more letter to be written, one more hand to be held.

Some days, I get so tied up with supporting other people that I don't get around to doing the paying job that supports me.

 

So here's to the advocates, "tired" people who give tirelessly.  I could name names, but I know I'd leave out someone important -- you know who you are, and more importantly, the CFS community knows who you are.  For a bunch of people who often have the feeling that "no one cares", it's nice to know that so many of you care enough to phone/write/blog/e-mail/author/advocate/publicize/analyze/gadfly. 

 

 

 

Let’s Do The Time Warp Again…CFSAC Agenda | CFS Untied

Let's Do The Time Warp Again…CFSAC Agenda | CFS Untied

 

Up to their old tricks again

Key to being an empowered patient: Trust your gut

Key to being an empowered patient: Trust your gut – The Chart - CNN.com Blogs

 

1.5 million Americans die each year due to medication errors, the  Institute of Medicine says.
That's roughly the same number of people who live in Idaho. You don't have to be a statistic. All this week, Senior Medical Correspondent Elizabeth Cohen will share tips with viewers for staying safe in medical situations. The first lesson: Trust your gut.

* * *

I've had doctors prescribe things I've already had bad reactions to, and tell me "it'll be fine".  80% of medical malpractice lawsuits are preventable error.  Do your job right, and you won't get sued.

Psychiatric Misdiagnoses in Patients with CFS

May be reposted.


Here is David Sampson's comment on the recent Peter White et al paper entitled "Psychiatric misdiagnoses in patients with chronic fatigue syndrome" published in the JRSM Short Reports:



Re-   Peter White et al  (2010) Psychiatric misdiagnoses in patients with
chronic  fatigue syndrome :Tara Lawn1 ? Praveen Kumar1 ? Bernice Knight2 ?
Michael  Sharpe3 ? Peter D White4 on behalf of the PACE trial management
group (listed in  protocol reference). J R Soc Med Sh Rep 2010;1:28. DOI 
10.1258/shorts.2010.010042

http://shortreports.rsmjournals.com/content/1/4/28.full


In this paper Professor White notes the high prevalence of  co-morbid
psychiatric illness in a cohort of CFS sufferers (56%) defined using  the Oxford
CFS Criteria and their under-diagnosis by clinicians in a secondary  care
specialist Chronic Fatigue Syndrome clinic.

The main question concerns the validity of employing the Oxford  CFS
criteria in this study. Rates of co-morbid psychiatric illness in ME/CFS patients
are known to be affected by diagnostic criteria  which clearly influence
patient selection (Jason, 2004).

In assessing the validity of the Oxford CFS  criteria it is interesting
that Professor White himself  noted in his original Lancet paper (White, 2001)
examining various CFS  criteria that: "both mood disorder at 2 months and
emotional personality  (neuroticism) predicted Oxford-defined CFS...These
predictions of CFS  were related more to having a co-morbid mood disorder than
to having CFS  itself".

What is of critical importance is the fact that the  strongest determinant
of an "Oxford defined CFS" are mood disorder and premorbid  psychiatric
disorder/GP attendance in year before onset- all of which are  predictors of
mood disorder/psychiatric illness quite independently of a fatigue syndrome
( see Sampson, 2010).

If such Oxford defined patients are ME/CFS patients who happen  to have developed depression/psychiatric illness subsequently to CFS itself then premorbid psychiatric history would not be such a potent predictor- however it is.

This demonstrates yet again that not only do such broad criteria  fail to
exclude patients with primary psychiatric diagnosis in the absence of 
physical symptoms (Stein 2005, Jason 1997, Sampson 2010) but that these  criteria
may be better at selecting such patients than ME/CFS patients  per se.

If both ME/CFS  and mood disorder/psychiatric illness were  synonymous this
would not matter- however they are not. The genetics of  ME/CFS, hypothalamic-pituitary-adrenal axis function, quantitive EEG and brain  blood flow on SPECT all differentiate between CFS and mood  disorder/depression (Stein, 2005).

This suggests that at very best the Oxford CFS criteria are  ambiguous and
at worst misleading and tautological in conception.

In fact as long ago as 2001 Professor  White noted in  his study examining
various ME/CFS criteria  "These data support the difference in nosology  and
aetiology between acute and chronic fatigue  syndromes (of relatively short
duration) and mood disorders.  They also suggests that the Oxford and CDC
criteria  for CFS should be used with caution or only  with stratification by
mood disorder  in aetiological studies".

David Sampson BSC(Hons),MSc,MBPsychS


References

Jason L. et al.  (2004) Comparing the Fukuda et al Criteria and the 
Canadian Case definition for Chronic Fatigue Syndrome. Journal of Chronic  Fatigue
Syndrome ,12, 37-52.

White P. et al. (2001); Lancet, Vol. 358, N.9297; pp 1946-1953  Predictions
and associations of fatigue syndromes and mood disorders that occur  after
infectious mononucleosis.

Sampson D.P. (2010)  Close Analysis of a Large Published  Trial Into
Fatigue Syndromes and Mood Disorders That Occur After Documented  Viral Infection.
Bulletin of the IACFS/ME, Vol 18,Issue 2, Summer  2010.

Stein E (2005). Chronic Fatigue Syndrome: Assessment and  Treatment of
Patients with ME/CFS: Clinical Guidelines for  Psychiatrists.

Jason L. (1997). Politics, Science, and the Emergence of a New  Disease:
The Case of Chronic Fatigue Syndrome, American Psychologist; Vol. 52,  No. 9,
973-983.

 

Why am I so tired? - CNN.com

Why am I so tired? - CNN.com

 

Of course, they don't list CFS, so we have to. 

 

Be forewarned, posts with actual links will not go through, so you'll have to disguise the fact that it's a link -- fool the computer -- break up the COM or ORG with spaces.

 

Give 'em hell!