Millions of people suffer from the ghastly disease known as "Chronic Fatigue Syndrome." Some can still function, with limitations, but for others life has been reduced to a dreary, pain-filled hell unimaginable to those who are not touched by the disease.
One woman has to be taken to the bathroom in a wheelchair. Another, having developed a brutal sensitivity to light, must navigate her home by touch, lights out, windows sealed against the faintest ray from the sun. Yet another spent the best part of a year living on her bathroom floor, unable to crawl back to her bed.
While the government agencies who are supposed to be helping these people continue to dance away from their responsibilities, thousands live with equally devastating horrors. Some are homebound, others bedbound; some are unable to read, others unable to speak; many require round the clock care. Yet these people - isolated, in agony, lives in ruins - still cling to hope.
For the most part, because they are too ill to participate in life in any meaningful way, these people are invisible.
Here are some of their stories.
Monday, January 10, 2011
Saturday, January 8, 2011
XMRV treatment in 2011?
In an interview with Nevada Newsmakers on December 22, 2010, Dr. Judy Mikovits says that "This is really a great time of hope ... we are understanding why the virus hurts the immune system ... what's going wrong to make you sick. ... We expect treatments next year."
This is right at the end of the video, starting at about 12:15.
Update: In December, at the International Science Symposium on ME/CFS in Queensland, Austrailia, findings of brain and spinal cord damage and immune system derangement dominated the reports. Promising research into viral infection and exercise intolerance was also discussed.
Update: In December, at the International Science Symposium on ME/CFS in Queensland, Austrailia, findings of brain and spinal cord damage and immune system derangement dominated the reports. Promising research into viral infection and exercise intolerance was also discussed.
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.
Thursday, January 6, 2011
Macaque monkeys and XMRV
Possibly the most significant CFS-related research published last year was done by a group connected with Emory University, Abbot Labs, and the Cleveland Clinic.
Rhesus macaque monkeys were injected with XMRV, and then their blood and organs were tested to track the progression of the infection.
After a few weeks, XMRV was almost totally gone from the blood. But the infection had spread to many of the organs, including the lungs, spleen, liver, lymphatic system, bronchial passages, gut, and the sex organs.
When the monkeys were later injected with a bolus of foreign peptides (which mimics an acute infection, an immunization, or an acute mold exposure) there was a huge reactivation of infectious XMRV. Stress and certain hormones also appear to be significant reactivators.
This study is quite consistent with my observations of the behavior of my own illness over the past 16 years. It also sheds new light on several recent studies which failed to find XMRV in the blood of patients with XRMV.
I believe this study should provide new impetus and direction for future XMRV and CFS-related research.
Rhesus macaque monkeys were injected with XMRV, and then their blood and organs were tested to track the progression of the infection.
After a few weeks, XMRV was almost totally gone from the blood. But the infection had spread to many of the organs, including the lungs, spleen, liver, lymphatic system, bronchial passages, gut, and the sex organs.
When the monkeys were later injected with a bolus of foreign peptides (which mimics an acute infection, an immunization, or an acute mold exposure) there was a huge reactivation of infectious XMRV. Stress and certain hormones also appear to be significant reactivators.
This study is quite consistent with my observations of the behavior of my own illness over the past 16 years. It also sheds new light on several recent studies which failed to find XMRV in the blood of patients with XRMV.
I believe this study should provide new impetus and direction for future XMRV and CFS-related research.
- XMRV: Examination of Viral Kinetics, Tissue Tropism, and Serological Markers of Infection - The study abstract.
- XMRV Infection in Primates - Dr. Paul Cheney's detailed discussion of the study.
- Monkey Business - Political cartoons commenting on the study.
- More Monkeys - More politics.
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.
Friday, August 13, 2010
Cardio and Blood Volume Links
Quick links to research and treatment related to low blood volume and cardiac dysfunction in people with CFS/ME:
Note that the above papers and articles are just the tip of the iceberg; there is a great deal of information available on studies and other evidence supporting the connection between CFS, low blood volume, and cardiomyopathy.
Dr. Judy Mikovits, lead researcher in the recent study linking CFS/ME with the XMRV retrovirus, believes that XMRV impairs the immune system in such a way that other pathogens, such as EBV, HCMV, and HHV6, can thrive.
Until this enabling relationship is proven and effective treatments for XMRV are found, Dr. Lerner's antiviral treatment makes a great deal of sense, especially given his well-documented success.
Update: Read this newsletter from Dr. David Bell, who treated CFS patients for over 25 years. Dr. Bell has some interesting insights into the XMRV research to date as well as the political context surrounding CFS-related research.
Dr. Bell also lists a number of readily available lab tests which he believes can be used to detect and/or confirm the presence of CFS in patients, including echocardiogram with cardiac output while standing and IVRT interrogation with oxygen.
Quick link to this page: http://tinyurl.com/cfs-cardio
Dr. Martin Lerner:
Frequently Asked Questions: Cardiac abnormalities in CFS patients; diagnosis; treatment of EBV, HCMV and HHV6; recent research.
Dr. Lerner on his Long Lerm Antiviral Treatment Study: The effectiveness of long term antiviral therapy on CFS and orthostatic intolerance in 142 patients seen more than 7000 times over six years.
Subset-directed antiviral treatment of 142 herpesvirus patients with chronic fatigue syndrome
David H. P. Streeten, MB, DPhil, FRCP, FACP and David S. Bell, MD, FAAP:
Circulating Blood Volume in Chronic Fatigue Syndrome
Dr. Jacob Teitelbaum:
Treating Low Blood Volume and Decreased Heart Function in CFS
Note that the above papers and articles are just the tip of the iceberg; there is a great deal of information available on studies and other evidence supporting the connection between CFS, low blood volume, and cardiomyopathy.
Dr. Judy Mikovits, lead researcher in the recent study linking CFS/ME with the XMRV retrovirus, believes that XMRV impairs the immune system in such a way that other pathogens, such as EBV, HCMV, and HHV6, can thrive.
Until this enabling relationship is proven and effective treatments for XMRV are found, Dr. Lerner's antiviral treatment makes a great deal of sense, especially given his well-documented success.
Update: Read this newsletter from Dr. David Bell, who treated CFS patients for over 25 years. Dr. Bell has some interesting insights into the XMRV research to date as well as the political context surrounding CFS-related research.
Dr. Bell also lists a number of readily available lab tests which he believes can be used to detect and/or confirm the presence of CFS in patients, including echocardiogram with cardiac output while standing and IVRT interrogation with oxygen.
Quick link to this page: http://tinyurl.com/cfs-cardio
Friday, February 5, 2010
Cause of Death
CFS patients who died of cancer, heart failure, or suicide had much shorter lifespans than the general population, according to a 2004 study:
Average age of cancer deaths:
Average age of heart failure deaths:
Average age of suicide deaths:
The dramatic results of this preliminary study begs the question: why hasn't more research been done in this area?
Imagine the impact on the potential funding for research into ME/CFIDS/XMRV if a more comprehensive study produced the same results - and got the kind of coverage in the media that the WPI XMRV study did.
More information:
Average age of cancer deaths:
- ME/CFS – 47.8 years
- Avg population – 72.0 years
- Difference – 24.2 years
Average age of heart failure deaths:
- ME/CFS – 58.7 years
- Avg population – 83.1 years
- Difference – 24.4 years
Average age of suicide deaths:
- ME/CFS – 39.5 years
- Avg population – 48.0 years
- Difference – 8.5 years
The dramatic results of this preliminary study begs the question: why hasn't more research been done in this area?
Imagine the impact on the potential funding for research into ME/CFIDS/XMRV if a more comprehensive study produced the same results - and got the kind of coverage in the media that the WPI XMRV study did.
More information:
- Causes of Death Among Patients With Chronic Fatigue Syndrome, Jason et al - The original study. Also here. See also Dr. Jason's web site.
- Causes of Death among Patients with Chronic Fatigue Syndrome - A Dig Deep News blog post. Summary and links.
- Cause of Death among Patients with Chronic Fatigue Syndrome - Phoenix Rising forum thread.
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