Several studies have been published in recent months in which scientists were unable to find XMRV in patients diagnosed with ME/CFS. Authors of these studies and others have claimed that these results discredit the seminal XMRV study by Lombardi/Mikovits of the Whittemore Peterson Institute and contend that Mikovits' results must have been due to laboratory contamination.
As a result of these studies, Science magazine published an Editorial Expression of Concern, which casts doubt on the Lombardi/Mikovits XMRV study which Science themselves published in October 2009. Here are responses from the WPI:
Dr. Judy Mikovits
Annette Whittemore
WPI Clinical Advisory Board
Below is a comparison of the parameters, tests, and methodologies used in the failed studies, the Lombardi/Mikovits study and the Alter/Lo study, which found an association between ME/CFS and MLV's (Murine Leukemia Viruses).
A Comparison of Methods for the Detection and Association of XMRV in Chronic Fatigue Syndrome
None of the failed studies came anywhere close to replicating the work of Lombardi/Mikovits and Alter/Lo. Saying these studies disprove anything is like saying that just because my paper airplane can't fly across the street, humans can't possibly have made it into space.
Showing posts with label Deckoff. Show all posts
Showing posts with label Deckoff. Show all posts
Monday, June 13, 2011
XMRV/ME/CFS and Inflammation
Two studies regarding inflammation in people with ME/CFS have been published recently.
The Whittemere Peterson Institute published Xenotropic Murine Leukemia Virus-related Virus-associated Chronic Fatigue Syndrome Reveals a Distinct Inflammatory Signature, which reveals a distinct cytokine and chemokine signature in people with XMRV-associated CFS and suggests a possible diagnostic procedure for the disease. (Thanks to Dr. Jamie Deckoff-Jones for publishing a link to this study in her blog.)
Also, a study, Exercise Challenge Reveals Potential CFS Biomarkers, explores biological responses to mild exercise in people with CFS. This study, by a University of Utah group affiliated with the CFIDS Association of America, supports the personal observations of many of us with ME/CFS who find that even very mild exertion can cause a significant relapse and/or severe exacerbation of symptoms.
The study also found that the use of anticonvulsants can have a beneficial effect, reducing this post-exertional relapse.
The Whittemere Peterson Institute published Xenotropic Murine Leukemia Virus-related Virus-associated Chronic Fatigue Syndrome Reveals a Distinct Inflammatory Signature, which reveals a distinct cytokine and chemokine signature in people with XMRV-associated CFS and suggests a possible diagnostic procedure for the disease. (Thanks to Dr. Jamie Deckoff-Jones for publishing a link to this study in her blog.)
Also, a study, Exercise Challenge Reveals Potential CFS Biomarkers, explores biological responses to mild exercise in people with CFS. This study, by a University of Utah group affiliated with the CFIDS Association of America, supports the personal observations of many of us with ME/CFS who find that even very mild exertion can cause a significant relapse and/or severe exacerbation of symptoms.
The study also found that the use of anticonvulsants can have a beneficial effect, reducing this post-exertional relapse.
Friday, February 25, 2011
Dr. Deckoff and the new WPI clinic
Dr. Jamie Deckoff-Jones is now working for the Whittemore Peterson Institute, hiring staff for their new clinic, which will be treating neuro-immune diseases, including CFS/ME, Lyme, and autism - and feeding what they learn back to the WPI's research center.
Saturday, January 8, 2011
Jamie Deckoff-Jones on contamination, autism, and an epidemiological disaster
Jamie Deckoff-Jones, MD, is a physician who is XMRV positive and suffers from ME/CFS. She maintains a blog about the disease and her own progress with HIV retroviral treatments.
In her post on December 22, 2010, Returning to Function, Dr. Deckoff responds to the papers released two days earlier showing that mouse DNA contamination can distort PCR test results - and the ludicrous claim that this proves XMRV does not cause CFS. She also discusses a possible relationship between XMRV and autism.
In her post on December 22, 2010, Returning to Function, Dr. Deckoff responds to the papers released two days earlier showing that mouse DNA contamination can distort PCR test results - and the ludicrous claim that this proves XMRV does not cause CFS. She also discusses a possible relationship between XMRV and autism.
Monday, August 30, 2010
More Evidence: Retroviruses Cause ME/CFS
A study released last week by the NIH, Harvard Medical School, and the FDA (!) found murine leukemia retroviruses (MLV's) similar to XMRV in 68% of people with ME/CFS and 7% without. This validates the Mikovits XMRV study published last fall. More info:
The study was submitted to the National Acadamy of Sciences by Dr. Harvey Alter, who is apparently a big cheese in research circles, and I believe it's going to be hard for the naysayers to ignore this. I am hopeful that this will lead to some clinical trials of anti-retrovirals on ME/CFS patients soon, and perhaps effective treatments for us someday soon.
Update: A study by Dr. Kenny de Meirleir in Belgium is about to released. This study also found retroviruses in ME/CFS patients.
One Doctor's Success using Anti-Retrovirals - On Herself
Meanwhile, a physician in Santa Fe, , and her daughter haven't been waiting for the drug companies and the government to get around to funding trials. They've already discovered that HIV drugs can help at least some people with ME/CFS.
Both Dr. Deckoff and her daughter have ME/CFS and both tested positive for XMRV. They have been trying the anti-retroviral drugs that have been found to stop XMRV in vitro (AZT, raltegravir, and tenofovir) and both are hugely improved.
A year ago both Dr. Deckoff and her daughter were able to spend only a few minutes per day out of bed. Last week Dr. Deckoff traveled to Reno for an ME/CFS conference, and her daughter has enrolled in community college.
Details on Dr. Deckoff's blog, here:
This, along with the new Alter study, is possibly the most hopeful thing I have read about ME/CFS since the Mikovits XMRV study last fall. However, other XMRV-positive people who have tried the same drugs have not had the same improvement - but they weren't being guided by a physician who has the illness herself. Dr. Deckoff has had to tinker with dosages and has gone on and off some of the drugs over time to find the right combination and progression. It's apparently pretty tricky to deal with this virus.
Dr. Deckoff's blog is full of more information about other treatments for ME/CFS and other possibly related illnesses such as Lyme. Her perspective, as a physician who has ME/CFS herself, is invaluable. She tried Lyme treatments for years herself; her experience and conclusions make me very glad I didn't do antibiotics after I tested positive for Lyme and Bartonella last fall.
Yet Another Name Idea
Will there ever be an appropriate name for this illness? One that's less misleading, less damaging - and less insulting - than the CDC's loathesome propaganda invention?
Dr. Joe Burrascano, well known authority on Lyme disease, will be proposing "HGRV" (Human Gamma Retro Virus) for the name of the virus, and "HGRAD" (Human Gamma Retrovirus Associated Disease) for the name of the illness when he attends the upcoming NIH retroviral conference this September. Read more
Is it in the Blood Supply?
Australia, New Zealand, Canada, and now the UK have banned people with ME/CFS from donating blood. Why hasn't the US done the same? Dr. Louis Katz, "a specialist in infectious diseases and a prominent figure in national blood banking organizations," explains the current situation. Watch his presentation to the CFIDS Association of America.
Coverup?
And finally, here is a documentary - made seventeen years ago! - that shows clearly how radically ME/CFS differs from chronic fatigue, and how the CDC covered this up. I've only managed to watch the first two parts so far, and they made me want to cry.
Wall Street Journal article
New York Times article
The study was submitted to the National Acadamy of Sciences by Dr. Harvey Alter, who is apparently a big cheese in research circles, and I believe it's going to be hard for the naysayers to ignore this. I am hopeful that this will lead to some clinical trials of anti-retrovirals on ME/CFS patients soon, and perhaps effective treatments for us someday soon.
Update: A study by Dr. Kenny de Meirleir in Belgium is about to released. This study also found retroviruses in ME/CFS patients.
One Doctor's Success using Anti-Retrovirals - On Herself
Meanwhile, a physician in Santa Fe, , and her daughter haven't been waiting for the drug companies and the government to get around to funding trials. They've already discovered that HIV drugs can help at least some people with ME/CFS.
Both Dr. Deckoff and her daughter have ME/CFS and both tested positive for XMRV. They have been trying the anti-retroviral drugs that have been found to stop XMRV in vitro (AZT, raltegravir, and tenofovir) and both are hugely improved.
A year ago both Dr. Deckoff and her daughter were able to spend only a few minutes per day out of bed. Last week Dr. Deckoff traveled to Reno for an ME/CFS conference, and her daughter has enrolled in community college.
Details on Dr. Deckoff's blog, here:
May 2010 - details on antiretroviral treatment regime
August 2010 - dramatic improvement!
This, along with the new Alter study, is possibly the most hopeful thing I have read about ME/CFS since the Mikovits XMRV study last fall. However, other XMRV-positive people who have tried the same drugs have not had the same improvement - but they weren't being guided by a physician who has the illness herself. Dr. Deckoff has had to tinker with dosages and has gone on and off some of the drugs over time to find the right combination and progression. It's apparently pretty tricky to deal with this virus.
Dr. Deckoff's blog is full of more information about other treatments for ME/CFS and other possibly related illnesses such as Lyme. Her perspective, as a physician who has ME/CFS herself, is invaluable. She tried Lyme treatments for years herself; her experience and conclusions make me very glad I didn't do antibiotics after I tested positive for Lyme and Bartonella last fall.
Yet Another Name Idea
Will there ever be an appropriate name for this illness? One that's less misleading, less damaging - and less insulting - than the CDC's loathesome propaganda invention?
Dr. Joe Burrascano, well known authority on Lyme disease, will be proposing "HGRV" (Human Gamma Retro Virus) for the name of the virus, and "HGRAD" (Human Gamma Retrovirus Associated Disease) for the name of the illness when he attends the upcoming NIH retroviral conference this September. Read more
Is it in the Blood Supply?
Australia, New Zealand, Canada, and now the UK have banned people with ME/CFS from donating blood. Why hasn't the US done the same? Dr. Louis Katz, "a specialist in infectious diseases and a prominent figure in national blood banking organizations," explains the current situation. Watch his presentation to the CFIDS Association of America.
Coverup?
And finally, here is a documentary - made seventeen years ago! - that shows clearly how radically ME/CFS differs from chronic fatigue, and how the CDC covered this up. I've only managed to watch the first two parts so far, and they made me want to cry.
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