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:

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, Jamie Deckoff-Jones, 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.

Cardio and Blood Volume Links

Quick links to research and treatment related to low blood volume and cardiac dysfunction in people with CFS/ME:

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

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:

• 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.