XMRV retrovirus linked to ME/CFIDS

A new study links the XMRV retrovirus to "CFS." Could this be the cause?

A comprehensive study by a consortium including the Whittemore Peterson Institute, the NIH's National Cancer Institute, and The Lerner Research Institute of the Cleveland Clinic Foundation was announced today. This study demonstrates a strong association between a mouse leukemia virus, XMRV, and "Chronic Fatigue Syndrome," better known as ME/CFIDS.

Since the NIH is involved (through their cancer research arm), a lot of people who normally dismiss the illness as a somatisation disorder (i.e. just another hysterical psychological trip) are taking the findings seriously.

Even CFS arch-villian William Reeves, the enemy of everyone who suffers from this illness, claims he's already got his little elves at the CDC working on replicating the study. Of course, based on past history, more likely they are industriously trying to not replicate it.

Update: Read these commentaries on this landmark announcement:

• Peggy's Blog - Powerful and moving essay by Peggy Munson about ME/XMRV, her personal experiences with the disease, and a broad look at the big picture. A must read if you or someone you care about has been diagnosed with ME, "CFIDS," "Chronic Fatigue Syndrome," Fibromyalgia, or MCS.
  
• Blog: Osler's Web - Hillary Johnson's triumphant declaration of victory over the dark forces in the US government's "health" agencies, the CDC and NIH, whose criminal actions prolonged the suffering of millions of victims of this terrible disease and resulted in countless unnecessary deaths.

News articles about the announcement:

• The Independent: Has Science Found the Cause of ME? - "...the senior author of the study, Judy Mikovits ... said further blood tests have revealed that more than 95 per cent of patients with the syndrome have antibodies to the virus – indicating they have been infected with XMRV... 'With those numbers, I would say, yes we've found the cause of chronic fatigue syndrome.'"
• Dance with Shadows: XMRV Virus Linked to Chronic Fatigue, Says Study - "'Just like you cannot have AIDS without HIV, I believe you won’t be able to find a case of chronic-fatigue syndrome without XMRV,' ... Dr Mikovits said."
• Nature Magazine: Virus Linked to Chronic Fatigue Syndrome - "'I can't wait to be able to tell my patients,' says Mikovits... 'It's going to knock their socks off. They've had such a stigma. People have just assumed they were just complainers who didn't handle stress well.'" Nature Magazine rarely reports on CFIDS, so this study must have really impressed them.
• Reuters: Study Isolates Virus in Chronic Fatigue Sufferers - "'You can imagine a number of combination therapies that could be quite effective and could at least be used in clinical trials right away,' Mikovits said in a telephone interview."
• NY Times: Virus Is Found in Many With Chronic Fatigue Syndrome - "'I think this establishes what had always been considered a psychiatric disease as an infectious disease,' said Dr. Mikovits. ... [She] said she and her colleagues were drawing up plans to test antiretroviral drugs — some of the same ones used to treat HIV infection — to see whether they could help patients with chronic fatigue."
• Suite 101.com: New XMRV Study Not the First to Find a Retroviral Link - "The study group of Elaine DeFreitas reported a link between CFS/ME and retroviruses back in 1991." and "Immunovirologist Michael Holmes described retroviral activity in cells of CFS/ME patients as early as 1986." Hillary Johnson documents the CDC's vicious attack on DeFrietas, which eventually forced her to leave the field.
  

Peggy Munson notes: Please ignore the news idiots who use the term "chronic fatigue" instead of ME/CFIDS. Idiopathic chronic fatigue affects some 25 percent of the population and does not resemble ME/CFIDS at all. Hopefully the new research will help the media understand that that is like calling AIDS "chronic weight loss." The preferred term for patients is still ME, or myalgic encephalomyelitis.

Sadly, it's not just the news idiots. I've seen dozens of health care providers - from MD's to naturopaths to acupuncturists to energy healers - in the fifteen years since I was diagnosed with "CFS," and I can't think of a single one that didn't use the term "chronic fatigue" when referring to my disease.

Peggy's Blog has links to many more articles.

Official information:

• Press Release: Consortium of Researchers Discover Retroviral Link to Chronic Fatigue Syndrome - The official press release in PDF form.
• Research Shows a Potential Retroviral Link Between XMRV and Chronic Fatigue Syndrome - The Cleveland Clinic's official press release.
• Consortium of Researchers Discover Retroviral Link to Chronic Fatigue Syndrome - The National Cancer Institute's official announcement includes the electron micrograph of the XMRV retrovirus which is displayed at the top of this post.
  
• Science Magazine: Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome - Abstract from the study.
• The Whittemore Peterson Institute - The official site of the research facility that led the study.
• The Cleveland Clinic's Lerner Research Institute - Another research facility which participated in the study.
  

To put this announcement in perspective, please read Hillary Johnson's speech "The Why" and then ponder on how much sooner this discovery might have been made - and the waste of innumerable years and countless lives avoided - had the people at the US Government's official agency responsible for investigating this disease actually done their jobs instead of undermining research and aggressively attempting to discredit the victims of the illness and people who believed them.

You might also want to review the discussion of Dr. Lerner's research into viral treatments of this illness in the July 21 entry of this blog.

An Emerging Understanding

Recent articles about the illness in question suggest an increasingly coherent and comprehensive understanding of the illness may be emerging.

Note: This illness is variously known as CFIDS, CFS, ME, and Fibromyalgia. The acronyms stand for "Chronic Fatigue and Immune Dysfunction Syndrome," "Chronic Fatigue Syndrome," "Myalgic Encephalomyelitis." I'll use a combination of the acronyms ME and CFIDS.

Diverse paths of investigation appear to be converging on a connection between mitochondrial dysfunction, cardiomyopathy, and immune dysregulation; secondary factors such as leaky gut and central nervous system abnormalities; and possible causative factors such as viral activity and neurotoxins. These connections provide a complex but compelling picture of the workings of this heretofore baffling disease.

In this model, an initial insult (viral, physical trauma, or environmental toxin) causes mitochondrial failure leading to secondary cardiomyopathy, which in turn leads to immune dysregulation which permits ongoing viral activity. This viral activity sustains the mitochondrial dysfunction, creating a stable closed-loop system of persistent illness which is very difficult to disrupt.

At the same time, the low oxygen environment resulting from the cardiomyopathy leads to leaky gut and the overgrowth of organisms in the digestive system which are normally controlled or not present in healthy people. These organisms produce toxins which also degrade mitochondrial function and impede other systems critical to health, thus further reinforcing the closed-loop system.

ME/CFIDS Overviews

Come to bed with ME - A brief introduction to the experience of being ill with ME/CFIDS. See also A Sudden Illness by Lauren Hillenbrand and Olympian Battles CFIDS, an interview with legendary soccer star Michelle Akers.

Evidence that ME/CFS is not a somatisation disorder - ME/CFS advocate Margaret Williams discusses heart failure and post-exertional fatigue and their connection to other CFS symptoms such as cognitive impairment, persistent muscle and joint pain, headaches, and sleep disorders. This article contains a concise summary of Dr. Paul Cheney's cardiomyopathy theory (more on Cheney below) and also a powerful description of the impact on the quality of life of patients with this illness.

From the article:
“In my experience, (ME/CFS) is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages.” (Dr Daniel L Peterson: Introduction to Research and Clinical Conference, Fort Lauderdale, Florida, October 1994; published in JCFS 1995:1:3-4:123-125)

"In comparison with other chronic illnesses such as multiple sclerosis, end-stage renal disease and heart disease, patients with (ME)CFS show markedly higher levels of disability." (Quality of Life and Symptom Severity for Individuals with Chronic Fatigue Syndrome: Findings from a Randomised Clinical Trial. RR Taylor. American Journal of Occupational Therapy 2004:58:35-43)

“There is evidence that the patients with this illness experience a level of disability that is equal to that of patients with late-stage AIDS, patients undergoing chemotherapy (and) patients with multiple sclerosis.” (Professor Nancy Klimas, University of Miami, speaking at the launch of the US CDC campaign to raise awareness of ME/CFS, 3 November 2006, National Press Club, Washington DC)

Laboratory Marker

Dr. Kenny De Meirleir's "News Heard Round the World" - Dr. De Meirleir announces the discovery of a marker for CFS: high levels of the neurotoxin hydrogen sulfide (H2S) in the urine. He introduces an inexpensive lab test for H2S and connects H2S to many of the symptoms suffered by CFS/ME patients - and to mitochondrial dysfunction.

ME/CFIDS: Mitochondrial Dysfunction, Oxygen Toxicity, and Cardiomyopathy

CFS, The Central Cause: Mitochondrial Failure - Dr. Sarah Myhill describes what she believes is the underlying cause of CFS: cardiac failure secondary to mitochondrial dysfunction. This page includes an excellent discussion of the delayed fatigue phenomenon that I have experienced consistently throughout my illness and explains the causes of many of the other symptoms experienced by people with CFS (including me). Dr. Myhill suggests testing for ATP production and other markers which she believes can provide a definitive diagnostic picture of CFS. She also touches on strategies for recovery.

Dr. Paul Cheney's complex cardiac failure/mitochondrial dysfunction/oxygen toxicity model is based on Dr. Arnold Peckerman's study (see below) and backed by 20 years of research into CFS and treatment of many severely ill CFS patients. In my opinion Dr. Cheney's grasp of the characteristics and progression of the illness is second to none.

Dr. Cheney also makes a connection between mitochondrial dysfunction, immune system dysregulation, and chronic viral activity (see below for more on viral involvement in CFS).

Here are reports on Dr. Cheney's recent lecture in Virginia:

• Paul Cheney Talk, Fairfax VA - Chris (Consuegra?) encapsulates Paul Cheney's three hour lecture in Fairfax, VA, on April 25, 2009. Cheney discusses his theories about oxygen toxicity and diastolic dysfunction as the underlying causes of CFS, and his current treatment plan.
• Judy Roget's Corrections - Judy suggests corrections to some of Chris' comments about Dr. Cheney's lecture.
• Dr. Cheney Goes His Own Way: The Virginia 2009 Lecture - Cort summarizes Chris' comments about the Fairfax Lecture.

Dr. Cheney currently has two new web sites under construction:

• The Cheney Clinic
• Cheney Research

You may also wish to read Cheney's seminal lecture, The Heart of the Matter: CFS & Cardiac Issues, at the CFS & FM Support Group of Dallas-Fort Worth, and keep an eye out for publication of his latest lectures on DVD.

Slow Flow - Dr. Suzanne Vernon says that as many as 70% of people with CFIDS also have POTS (postural orthostatic tachycardia syndrome). Not enough oxygen is getting to our brains. She also cites a study which showed decreased blood volume in people with CFIDS.

Antiviral Treatments

Cardiac Insufficieny Hypothesis - Dr. A. Martin Lerner argues that a subset of ME/CFS exists in which chronic mononucleosis, caused by a virus such as Epstein Barr, cytolomegalovirus, or HHV6, is a factor - and that the virus infection persists in the heart and contributes to cardiac dysfunction. Dr. Lerner holds several US patents related to diagnosis and treatment of CFS/ME. This article contains links to articles related to Paul Cheney's work.

A clinical trial by Dr. Lerner et al showed CFS patients treated with valacyclovir and/or valganciclovir experienced marked improvement. More Lerner articles are here.

Physicians Encouraged by Valcyte - Dr. Jose Montoya's study suggests that CFS can be caused by HHV-6 and/or Epstein Barr virus, and that Valcyte might be an effective treatment for CFS when HHV-6 is involved.

CFIDS/CFS vs. Myalgic Encephalomyelitis

The Hummingbirds' Foundation for M.E. - M.E. activist Jodi Basset makes an emphatic distinction between Myalgic Encephalomyelitis and CFS/CFIDS. She connects M.E. with low blood volume and cardiac insufficiency, CNS and spinal abnormalities, and presents a comprehensive list of tests which can be used to diagnose M.E.

This site contains a massive amount of material relevant to these illnesses. Also, Jodi's personal story is a powerful cautionary tale about the risks involved in taking advice from physicians (and others) who do not understand this illness.

The Nightingale Foundation - Dr. Byron Hyde also makes a distinction between M.E. and CFS and says CFS is not a disease but M.E. is - and asserts that M.E. can be diagnosed by specific tests.

Web Sites

CFIDS Association of America - Information on diagnosis, treatment, research, and advocacy.

Maylgic Encephalomyelitis Society of America - This site's home page makes a powerful distinction between the illness commonly known as Chronic Fatigue Syndrome and the symptom of fatigue.

FightFM - A web site devoted to Fibromyalgia which contains a large body of information relevant to CFS/ME/CFIDS.

Phoenix Rising - News about ME/CFS and Fibromyalgia.

Background Information

Peckerman et al - Study by Dr. Arnold Peckerman and others demonstrating that patients with severe CFS had significantly lower stroke volume and cardiac output than controls and less ill patients. This is the study which on which Dr. Paul Cheney and others have based subsequent research and treatment regimes.

Low Blood Volume and CFIDS - A discussion of the phenomenon of low blood volume which has been observed in CFIDS patients, and the connection with low blood pressure and other symptoms related to CFIDS and Fibromyalgia.

Cortisol Treatment for FM/CFS - A study suggesting cortisol can provide relief of symptoms. I've tried cortisol myself, with dreadful results, so I'm skeptical.