Pass this on: Missing Persons Registry - Haitian Earthquake January 2010

Copy of message today on Twitter from Ushahidi's Erik Hersman:

Pass this on. Missing persons registry for #haiti is http://www.haitianquake.com
about 4 hours ago from twhirl
ushahidi

Further reading

Patrick Meier's report at Ushahidi's blog, 13 January 2010: Our Efforts in Response to Haiti’s Earthquake - We’ve launched Haiti.Ushahidi.com

Ethan Zuckerman's blog post at My Heart's in Accra, 13 January 2010: Following the Haitian earthquake online

Official Statement from the Whittemore Peterson Institute Regarding UK Study

FOR IMMEDIATE RELEASE
Frankie Vigil, 06 January 2010 
R&R Partners for Whittemore Peterson Institute
775-336-4555
frankie.vigil@rrpartners.com

Official Statement from the Whittemore Peterson Institute Regarding UK Study

The Whittemore Peterson Institute (WPI) has reviewed the paper entitled “Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome.” This study did not duplicate the rigorous scientific techniques used by WPI, the National Cancer Institute and the Cleveland Clinic, therefore it cannot be considered a replication study nor can the results claim to be anything other than a failure not just to detect XMRV, but also a failure to suggest meaningful results.

The scientific methods used by WPI are very exact and require specific techniques to ensure accuracy. Differences in techniques employed by Erlwein et al. not only explain their failure to replicate the WPI study, but also render the conclusions meaningless. These differences include, but are not limited to the following:

1) blood sample volumes and processing;
2) patient criteria/population differences;
3) number and type of tests done to assure accurate results, including white blood cell culture;
4) use of a molecular plasmid control in water versus a positive blood sample; and
5) different primer sequences and amplification protocol used to find the virus, which were not validated by a clinical control.

The WPI study was published after six months of rigorous review and three independent lab confirmations, proving that contamination had not taken place and that infectious XMRV was present in 67 percent of CFS patients diagnosed according to the Canadian and Fukuda criteria. In contrast, this latest study was published online after only three days of review.

Significant and critical questions remain as to the status of patient samples used in the UK study as those samples may have been confused with fatigued psychiatric patients, since the UK has relegated “CFS” patients to psychiatric care and not traditional medical practices.

“Little is known about the prevalence of XMRV world-wide, much less the incidence of XMRV in ME/CFS or prostate cancer” emphasizes Dr. Judy Mikovits. “WPI and its NCI collaborators are actively engaged with international research teams to investigate these important questions.”

WPI does not recommend the use of anti-retroviral drugs that have yet to be proven to be effective in treating XMRV infection. However, several large pharmaceutical companies have expressed interest in developing anti-retroviral and immune modulating drugs that will effectively treat XMRV associated diseases.

WPI looks forward to the results of other scientific groups around the world, serious about replicating its scientific results, by using the same techniques as WPI and its collaborators. The fact that XMRV was detected in 67 percent of the CFS samples in the U.S. study determined a significant association between XMRV and CFS, demanding a much more serious inquiry by responsible health agencies around the world as to the cause of this debilitating disease.
- - -

Whittemore Peterson Institute
The Whittemore Peterson Institute for Neuro-Immune Disease exists to bring discovery, knowledge, and effective treatments to patients with illnesses that are caused by acquired dysregulation of the immune system and the nervous system, often results in lifelong disease and disability. The WPI is the first institute in the world dedicated to X associated neuro-immune disease (XAND), and other X associated diseases, integrating patient treatment, basic and clinical research and medical education.

'The greater part of nursing consists in preserving cleanliness' -Florence Nightingale

In her seminal Notes On Nursing, published in 1860, Florence Nightingale wrote that ‘the greater part of nursing consists in preserving cleanliness’.

Hat tip: Melanie Phillips - A diminishing ethic of care

Quote of the Day

The hallmark of a civilised society is the attention paid to the old, infirm and vulnerable. -Melanie Phillips - An uncivilised attitude towards the old

XMRV is a scientific stimulus package for the field of CFS research

From Facebook by Kim McCleary,
President & CEO The CFIDS Association of America
November 25, 2009
CFIDSLink Extra: Getting "Right" and Giving Thanks

Seven weeks ago, a consortium of researchers at the Whittemore Peterson Institute, Cleveland Clinic and the National Cancer Institute published results of a study linking XMRV, a human retrovirus, and CFS. XMRV had previously been linked to an aggressive form of prostate cancer.

This Oct. 8, 2009 publication in Science continues to attract worldwide media attention and has ignited interest in CFS from many disciplines within the scientific community. As Dr. Daniel Peterson stated at the Oct. 29, 2009 meeting of the federal CFS Advisory Committee, “XMRV is a scientific stimulus package for the field of CFS research.” We couldn’t agree more. Congratulations to the team led by Dr. Judy Mikovits at the Whittemore Peterson Institute and inspired by the Whittemore family, especially Andrea Whittemore-Goad, who has suffered with CFS for 20 years since age 11.

In recent weeks, the U.S. Department of Health and Human Services has formed an interagency task force that is meeting regularly to appropriately replicate the CFS studies, address validation studies, development of appropriate screening and diagnostic tests, and to address the safety of the blood supply. There has not yet been a formal statement from the Department about this interagency effort, but the National Cancer Institute (part of the National Institutes of Health) posted an informational question-and-answer page about XMRV on November 18, 2009. More information from the federal agencies is expected soon, especially on the topic of blood safety.

Numerous follow-up studies are under way at academic centers and government labs in the U.S. and other countries. On November 11, the Cleveland Clinic hosted a meeting of researchers studying XMRV in prostate cancer, CFS, and other diseases. Last week, the Medical Research Council of the U.K. held a meeting on ME/CFS at which XMRV studies were discussed. These investigators are proceeding cautiously to ensure that their results are comparable to the initial study based on the characteristics of patients and controls tested, and the laboratory methods and procedures utilized. Although it’s tempting to pass along rumors about which groups might have found positive and negative results in samples they’ve tested so far, we will await published data from authoritative sources before posting updates.

Response from the CFS community to the initial study, media reports and burgeoning online discourse has run the gamut from salvation to skepticism, from relief to fear, from euphoria to panic. These varied and dynamic reactions have created communications challenges, as organizations and individuals have tried to keep up with the latest news and separate data from opinion and rumor from fact. With the many channels by which people now receive information, new sites have sprung up and existing ones are busier than ever. We’re using a combination of new and traditional media to keep our constituency informed. Content, tone and timing are all important and, at times, we acknowledge that we have gotten only one of the three completely right. And we recognize that these missteps have created some questions and strong feelings about our response to the XMRV study. Be assured that we share the hope and anticipation that these important findings will lead to immediate advances in diagnosis and treatment. And know that we’re listening to feedback, shared both directly and indirectly, with us. We’re constantly working to refine our messages to ensure that we deliver the factual, focused communications you count on.

On this Thanksgiving eve, we express gratitude for the dedicated efforts of all researchers, professionals, and volunteers who seek to advance understanding of CFS, including the team led by the Whittemore Peterson Institute. We are most grateful for the sacrifices of donors at all levels who have sustained the CFIDS Association of America over the past 22 years and who share our relentless determination to make CFS widely understood, diagnosable, curable and preventable.

For more information about the topics mentioned above, please visit http://www.cfids.org/XMRV/default.asp#info.

Warm wishes for a peaceful Thanksgiving holiday.

Kim McCleary
President & CEO
The CFIDS Association of America
November 25, 2009

Meme: Joe Trippi's Eleven-Eleven 1111Campaign - America's and Britain's Veterans have given so much. Now, you can give back.

Joe Trippi, one of America's greatest bloggers, has launched Eleven Eleven Campaign. The objective of the Eleven Eleven Campaign is simple: to get 11 million Americans to donate $11 to support America’s Veterans. Here is a copy of Joe's latest tweet on Twitter:

Tomorrow is Veterans Day, and now is our moment to encourage our friends, family members and colleagues to join us... http://bit.ly/9Iu9s
33 minutes ago from Facebook
1111Campaign
Eleven Eleven

Hey Joe! Britain's Veterans have given so much too!

Stand with 11 million Brits and Give £11 to Support Britain’s Vets!

Take Action Today
Click here to support Britain's Veterans
November 11, 2009

Top scientists to meet at Cleveland Clinic on trail of XMRV, a suspect in prostate cancer

Photo: Dr. Robert Silverman is a cancer biologist at the Cleveland Clinic instrumental in the discovery of the XMRV virus. (Lisa DeJong, The Plain Dealer)

From Cleveland.com by Angela Townsend, The Plain Dealer

Tuesday, November 10, 2009
Top scientists to meet at Cleveland Clinic on trail of XMRV, a suspect in prostate cancer

Medical reporter Angela Townsend discusses this story at 7:35 this morning with WCPN FM/90.3’s Eric Wellman on Tuesday Check-up. Listen in or log in online.

The virus XMRV has become a favorite topic in the scientific community -- three years after its initial discovery in prostate cancer tumors by researchers from the Cleveland Clinic and the University of California, San Francisco.

In October, a team of researchers from the Clinic, the University of Nevada at Reno and the National Cancer Institute reported finding the virus in the majority of patients they studied who had chronic fatigue syndrome. CFS is a debilitating disorder marked by profound fatigue, muscle pain, impaired memory and other symptoms. Its causes are unknown.

That news came on the heels of another study, published in September, that revealed the virus could be an important marker for aggressive prostate cancer tumors.

Capitalizing on the excitement and heightened spirit of collaboration, 75 of the top scientists nationwide studying XMRV are flying in to convene Wednesday at the Clinic.

"This is the first meeting of the major players in the area of XMRV," said John Coffin of the department of microbiology at Tufts University in Boston. "I think there's going to be a lot of excitement and a lot of new information presented."

XMRV is one of three known human retroviruses. The other two are HIV and HTLV (a type of virus that infects white blood cells and can cause leukemia and lymphoma). All three are transmitted through bodily fluids.

One of the most striking things about XMRV is that there are indications that up to 4 percent of people in the United States carry the virus, said Coffin, who wrote an editorial accompanying a journal article on the link to chronic fatigue syndrome.

"There might be other consequences of this infection," he said.

The invitation-only gathering will be the first large meeting of scientists on XMRV since the National Institutes of Health's closed-door session last summer on the topic.

The National Cancer Institute helped pull together key people involved in various research projects, said Robert Silverman, a cancer biologist at the Clinic's Lerner Research Institute. "It's been about two months in the making."

It will be a chance for researchers not only to swap information but to form new collaborations.

"We're learning things at such a rapid pace that we need a venue to exchange ideas and information," said Dr. Ila Singh, a professor in the University of Utah's department of pathology and senior author of the research involving prostate cancer patients.

"I'm hoping for a deeper understanding. We know so little at the moment. I'm hoping to learn more about the virus," she said. "That's what's sorely lacking. There's a lot of speculative information . . . I want to know what's real."

In advance of Wednesday's meeting, Silverman, one of the researchers credited with the initial discovery of XMRV, spoke with The Plain Dealer:

How did XMRV get its name?

It's a descriptive name. Xenotropic, which means the virus came from mice but mice are immune to its effects. It does affect other animals. Murine leukemia, which is the parent virus. Related Virus.

How does XMRV affect animals?

XMRV is closely related to a virus that causes leukemia, lymphoma and neurological diseases in animals. [Research] suggests that the human version could cause similar disease.

How did humans acquire XMRV?

We probably acquired it from mice because that's where the prototype exists. At what point it crossed over to humans we don't know. It's probably something that's been out there for a long time. Maybe many years.

How is XMRV spread?

That research is in the planning stage. What we're doing is trying to develop diagnostic assays to assess who has it and who doesn't. We're trying to determine how the virus is transmitted.

With the new possible link to chronic fatigue syndrome, does this make getting funding for XMRV research easier?

The funding part remains to be seen. There's been a tremendous interest in chronic fatigue syndrome. I've been getting almost nonstop calls from doctors and patients. They're obviously looking for hope in this study, although the virus is not proven to cause CFS. That's still unknown. But until it's ruled out, it's going to obviously be a subject of great interest.

Have the research gains since your findings three years ago been significant enough that investigators are hopeful about what may be around the corner?

It was kind of a sleeper. We published in 2006. There were really only a handful of papers published in the first couple years. It takes time for scientists to mobilize and perform research. Now there's a flurry of publications working on it. The field is exploding. It depends on whether we can nail down if this is a disease-causing virus. The potential of this is enormous. If it is proven to cause prostate cancer or chronic fatigue syndrome, then there would be the potential for new methods of diagnosis, new methods of treatment -- antivirals, even for prevention. That's why we're so excited about the prospect.

What about the recent study by German researchers in the journal Retrovirology that found no link between XMRV and prostate cancer?

It is not atypical of science for different groups to get different results. There could be methodological differences. I believe our methods were more sensitive. They may have missed it. Or it could be a different strain. Another interpretation is that the virus is more prevalent in the United States than in Germany.

Why should the average person care about XMRV?

We don't know at this point if the virus causes either prostate cancer or chronic fatigue syndrome. Our results suggest that XMRV is a candidate for causing human disease. However, it's still in a relatively early stage of the research. There are potentially major public health implications of this virus, so there's an urgency to figure it out and move forward.

What is the Clinic working on now in relation to XMRV?

We're working to help develop a diagnostic test that could be applied to a large number of people. It could be developed pretty quickly, maybe in a year or two.

We're really studying how the virus could cause disease at a very fundamental level. But a vaccine could be 10 years [away] or maybe longer.

This is exciting research. We're working as hard as we can to help benefit patients.

Contact Angela Townsend: atownsen@plaind.com or 216-999-3894.

Salute Royal British Legion & Combat Stress - Remembering PTSD and GWS on Remembrance Sunday

Today, on Remembrance Sunday, while watching BBC1 TV coverage of the memorial ceremony from the Cenotaph in Whitehall, London, I heard the presenter, David Dimbleby, remark on a 10% increase in requests for help from Combat Stress, an ex-services mental welfare society set up to help ex-service personnel suffering from psychological injuries and mental problems.

+ + + Remembrance Sunday &
The 11th hour of the 11th day of the 11th month + + +



Photo: Remembrance Day Poppy

Two minutes of silence at the eleventh hour of the eleventh day of the eleventh month because that was the time (in Britain) when the armistice became effective. The two minutes recall World War I and World War II. Before 1945 the silence was for one minute, and today some ceremonies still only have one minute of silence despite this.

In the United Kingdom, although two minutes' silence is observed on November 11 itself, the main observance is on the second Sunday of November, Remembrance Sunday.

Source: Remembrance Day - Wikipedia

POST TRAUMATIC STRESS DISORDER (PTSD)

See my blog Sudan Watch, 10 October 2008: Deployed peacekeeping veterans with Post Traumatic Stress Disorder (PTSD) have significant impairments in health-related quality of life

PTSD: Bonfire Night Cartoon

'I've got PTSD.'
- - -

POST TRAUMATIC STRESS DISORDER (PTSD)

Incase a VIP from the MOD ever comes across this blog post: please see my blog Sudan Watch, 10 October 2008: Deployed peacekeeping veterans with Post Traumatic Stress Disorder (PTSD) have significant impairments in health-related quality of life

Ampligen, the proposed chronic fatigue syndrome drug currently awaiting FDA approval

From Fibromyalgia & CFS Blog, 29 October 2009
By Adrienne Dellwo, About.com Guide to Fibromyalgia & CFS

Chronic Fatigue Syndrome: Dr. Lerner on Ampligen, XMRV

Dr. A Martin Lerner: Thoughts on XMRV, Ampligen

In my recent conversation with Dr. A. Martin Lerner, a former chronic fatigue syndrome sufferer who says he used his specialty in infectious diseases to find treatments for himself and others, I asked him about both the XMRV discovery (which was just days old at the time) and also aboutAmpligen, the proposed chronic fatigue syndrome drug currently awaiting FDA approval.

XMRV

XMRV is a retrovirus that researchers recently linked to chronic fatigue syndrome (CFS or ME/CFS). Dr. Lerner says that in his patients, he's discovered that 3 viruses are found in nearly everyone with ME/CFS -- Epstein-Barr virus (EPV), human herpesvirus 6 (HHV-6) andcytomegalovirus (CMV) -- and that some patients also have Lyme disease on top of one or more of those viruses.

At the time of our conversation, Dr. Lerner hadn't yet been able to look over the XMRV data but said he was definitely interested in seeing it.

On the surface, it might seem like other research -- especially the XMRV finding -- could disprove Dr. Lerner's theories about EBV, HHV-6 and CMV. However, (and these are my words, not his) that's not necessarily true. If the XMRV findings are replicated and nearly everyone with ME/CFS is infected with it, that wouldn't meant that other infectious agents didn't play a role. Could XMRV make people more susceptible to complications/long-term infection by EBV, HHV-6 or CMV? Could EBV, HHV-6 and CMV make us more vulnerable to XMRV infection? These are all areas that researchers could explore in the future.

Ampligen

Dr. Lerner treats his ME/CFS patients with one of two antiviral medications:

• Valacyclovir
• Valganciclovir

I asked him about Ampligen, which many hope will become the first drug ever approved for ME/CFS. "The science behind Ampligen is sound," Dr. Lerner said. He doesn't use it because it has to be given intravenously, which means patients have to come to the office more often, whereas people can take the other two at home.

Dr. Lerner and I also talked a lot about exercise in people with chronic fatigue syndrome, and he has a very interesting take on it. That's coming up soon.

More on Dr. Lerner

• Universal ME/CFS Evaluation Tool: EIPS
• Antiviral Protocol for ME/CFS
• Dr. Lerner's Personal Statement for Patients (on his website)

XMRV: Reno scientists prepare to address federal health officials

Annette Whittemore, founder and president of Whittemore Peterson Institute (WPI), will also speak at the meeting.

WPI will open a permanent research facility next June at the University of Nevada, Reno, USA.

From News 4 by Victoria Campbell, 29 October 2009:
Reno scientists prepare to address federal health officials

Just weeks after a medical breakthrough that pinpointed a virus that may be linked to Chronic Fatigue Syndrome, the doctor who helped lead the medical team is preparing to present his findings to an advisory committee from the U.S. Department of Health and Human Services.

Dr. Daniel Peterson, medical director of the Whittemore Peterson Institute at the University of Nevada, Reno, will discuss the findings before the Chronic Fatigue Syndrome Advisory Committee on Thursday, October 29, in Washington, D.C.

Dr. Peterson has treated patients with Myalgic Encephalomyelitis-commonly known as Chronic Fatigue Syndrome-for more than 25 years. Earlier this month, scientists at WPI identified an infectious retrovirus they called XMRV that could be linked to the devastating condition that affects millions of people worldwide.

Dr. Peterson said the discovery by scientists at WPI holds great promise for patients all over the world.

"I am hopeful about the possibility of providing patients who are positive for XMRV a definitive diagnosis, and hopefully very soon, a range of effective treatment options," he said.

Annette Whittemore, founder and president of WPI, will also speak at the meeting. WPI will open a permanent research facility next June at the University of Nevada, Reno.