Sunday, February 6, 2011

Chronic Fatigue Syndrome:ME/CFS

Digital Art / Photomanipulation

Hepatitis C has been associated with a wide spectrum of symptoms, with chronic fatigue being the most commonly reported. The symptom can be so devastating that sleep does not seem to solve the problem; with patients waking up feeling as if they have never gone to sleep. However, medical research connecting HCV with Chronic fatigue syndrome-CFS has yet to be proven. In this entry we revisit the studies over the last few years on CFS, including the 2009 discovery of the retrovirus XMRV.


Chronic fatigue syndrome (CFS) is a disease characterized by fatigue and chronic inflammation that can last years and may affect ~1% of the world’s population.


ME/CFS is the acronym for Myalgic Encephalomyelitis or Myalgic Encephalopathy / Chronic Fatigue Syndrome, a condition that has never been properly named. The disease has had many names, including: post-viral fatigue syndrome, low natural killer cell disease, chronic Epstein-Barr virus syndrome, chronic fatigue and immune dysfunction syndrome (CFIDS), and the insulting Yuppie flu. While all diagnosed ME/CFS patients are “functionally impaired by definition,” according to the Centers for Disease Control, the CDC studies indicate the illness can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, heart disease, chronic obstructive pulmonary disease, or end-stage (terminal) renal failure.


ME/CFS is also a relapsing, remitting illness that often follows a cyclical course. Typically the ME/CFS patient’s fatigue is made worse by either physical or mental activity, so that giving in to the temptation to overdo is repaid by “post-exertional malaise” (extreme, prolonged exhaustion and a worsening of symptoms following physical or mental exertion). The worse the illness, the less activity is possible. Indeed, the first means of testing objectively for ME/CFS may be a “Two-day Exercise Test” demonstrating diminished cardiopulmonary capacity in patients on the day following an initial exercise test.


Because of the difficulties surrounding the diagnosis of this condition, some physicians have suggested that the condition is imaginary or the result of depression or other mental disorder. Research, however, supports that ME/CFS is a real physiological condition that causes a substantial amount of suffering and is not a form of psychiatric illness or depression.



The XMRV debate

In December of 2010 you may recall the half page ad placed in the The Washington Post by patients bringing attention to HIV-like retroviruses, including XMRV. This new retrovirus has been linked to CFS and other diseases including aggressive prostate cancer. It was also detected in healthy blood donors suffering from chronic fatigue syndrome.

According to MCWPA

"A major scientific breakthrough occurred in October 2009 when the Whittemore Peterson Institute (WPI) at the University of Nevada, Reno, working with the National Cancer Institute and Cleveland Clinic, published the results of a landmark study. The seminal study, published in the leading scientific journal, Science, discovered the third human retrovirus, XMRV, in the blood of 67% of ME/CFS patients and in 3.7% of healthy controls. This suggests that up to 10 million US citizens could already be infected. This finding was later confirmed by the FDA, NIH and Harvard Medical School in a study published in the Proceedings of the National Academy of Sciences. Their results linked a family of human gamma retroviruses (to which XMRV belongs) to ME/CFS at a rate of 86.5% and 6.8% in the healthy population, bringing the total of Americans who may be infected up to 20 million people."


With this new 2009 research from the Whittemore Peterson Institute patients felt finally there was proof; CFS was not all in their head. The scientific community had an interest in chronic fatigue syndrome, so did the media, help was on the way.

Then research in October of 2010 changed all that; Medscape reported online in October 2010 the latest from researchers; "In More Studies Find No XMRV in Chronic Fatigue Syndrome, HIV, or Hepatitis C"


These are the three studies published at the same time in the Journal of Infectious Diseases.


This information is from; XMRV in Chronic Fatigue Syndrome: More Studies, More Controversy


1-J Infect Dis. 2010 Nov

Failure to Detect XMRV in Blood of Individuals at High Risk of Blood-Borne Viral Infections.

This study looked for the retrovirus somewhere you'd expect to find it -- the bodies of people with compromised immune systems. Examining the blood of 230 people with HIV and hepatitis C, they found nothing. This was a European study, and thus far, European studies have all come up empty handed, regardless of their collection and detection methods.


2-J Infect Dis. 2010 Nov 15;202(10):1478-81. Epub 2010 Oct 11.

XMRV Prevalence in Patients with Chronic Fatigue Syndrome or Chronic Immunomodulatory Conditions

Researchers in Boston looked for XMRV in 293 people seen at academic hospitals in the city. Patients came from 1 of 5 groups -- chronic fatigue syndrome, HIV, rheumatoid arthritis, transplants, and general patients. They found no evidence of XMRV in any of them, in spite of using the same detection methods as the FDA/NIH study released over the summer, which did detect XMRV (and other related retroviruses) in similar numbers to the Whittemore Peterson research. The lead researcher brought up the possibility of geographical differences in the presence of XMRV.


3-J Infect Dis. 2010 Nov 15;202(10):1470-7. Epub 2010 Oct 11.

Detection of XMRV in Normal and Tumor Tissue ... [in] Prostate Cancer is Dependent on Specific Polymerase Chain Reaction Conditions.

This study involved 144 prostate cancer patients from the southern United States, and researchers looked first at whether XMRV was present, and then whether it was linked to a abnormality in RNase L (an immune marker believed to be associated with some cases of both prostate cancer and chronic fatigue syndrome.) They found XMRV in 22% of patients, in normal tissue and in tumor tissue, suggesting that infection may precede cancer. They did not find a link with the RNase L polymorphism.



XMRV & Chronic Fatigue Syndrome: Where Do We Stand?
Wednesday January 5, 2011

It's been 15 months since the Whittemore Peterson Institute (WPI) published its study linking a retrovirus to chronic fatigue syndrome (ME/CFS) and a lot more research has been done, but if anything, the waters are only growing cloudier. The loudest voices right now are shouting "cross contamination."...continue reading...


Hepatitis C Patients Understand All To Well How The Game Is Played

Patients and researchers know that medical science will continue to evolve with improved sophisticated means of testing, in time research will again come full circle. What was once medical evidence will be reversed, what was once reversed will become medical evidence. The revolving door of medical science is a proven dilemma, for us and for them. Until that time CFS patients go back to the holding tank, waiting for validation of a disease that medical researchers and even friends do not really understand.

This familiar scenario has played out over and over with other diseases. HCV patients were ignored for years, even with elevated LFTs. With some female patients feeling discriminated against as physicians attributed their symptoms to depression, environmental stress, or lifestyle. This female blogger/patient felt neurotic as I left numerous appointments ashamed and embarrassed, was I just lazy ? The irony is patients wait for medical validation knowing before the research comes out; what they have is real. When will the medical community put in place a system which will bring to light the fact "a patients dialogue" is the most valuable entry into research.

Now CFS patients will start all over , as the wait for medical validation continues............


Symptoms / Diagnostic criteria

The most commonly used diagnostic criteria and definition of CFS for research and clinical purposes were published by the United States Centers for Disease Control and Prevention (CDC).

The CDC definition of CFS requires the following two criteria be fulfilled:
A new onset (not lifelong) of unexplained, persistent fatigue unrelated to exertion and not substantially relieved by rest, that causes a significant reduction in previous activity levels.
Four or more of the following symptoms that last six months or longer:

Impaired memory or concentration
Post-exertional malaise, where physical or mental exertions bring on "extreme, prolonged exhaustion and sickness"

Unrefreshing sleep
Muscle pain (myalgia)
Pain in multiple joints (arthralgia)
Headaches of a new kind or greater severity
Sore throat, frequent or recurring
Tender lymph nodes (cervical or axillary)
Other common symptoms include:
Irritable bowel, abdominal pain, nausea, diarrhea or bloating
Chills and night sweats
Brain fog
Chest pain
Shortness of breath
Chronic cough
Visual disturbances (blurring, sensitivity to light, eye pain or dry eyes)
Allergies or sensitivities to foods, alcohol, odors, chemicals, medications or noise
Difficulty maintaining upright position (orthostatic instability, irregular heartbeat, dizziness, balance problems or fainting)

Psychological problems (depression, irritability, mood swings, anxiety, panic attacks)

The CDC recommends that persons with symptoms resembling those of CFS consult a physician to rule out several treatable illnesses: "sleep disorders, depression, alcohol/substance abuse, diabetes, hypothyroidism, mononucleosis (mono), lupus, multiple sclerosis (MS), chronic hepatitis and various malignancies." Medications can also cause side effects that mimic symptoms of CFS.

Top Five Myths

Misinformation can kill. Let’s put these myths to bed.

Myth: ME/CFS is when you are tired a lot
Fact: For the severe cases, a patient’s experience is more like a “living death,” much more than just being tired. Nausea, headaches, dizziness, cognitive problems, light sensitivity, vertigo, and pain, in addition to feeling like their body is made of lead, can be so debilitating that many sufferers are largely housebound or bedbound. Symptoms can be mild, medium or severe. It is also not uncommon for sufferers to make some recovery only to relapse later and become bedridden again, sometimes for years.

Myth: ME/CFS is a psychological problem
Fact: Most ME/CFS patients have immune system abnormalities, infection reactivation, abnormal brain scan readings and many other biological signs of an organic disease. Some of the symptoms, such as a sore throat, swollen lymph nodes, and low grade fevers are not associated with psychiatric problems but are associated with infections or immune system responses.

Myth: ME/CFS is a disease of middle-aged women
Fact: ME/CFS can strike anyone at any time. Children as young as four and people as old as 70 can develop the disease. Men of all ages also develop this disease. While middle-aged women make up a large percentage of cases, teenagers of both genders are also commonly seen within our patient community.

Myth: ME/CFS is not infectious
Fact: ME/CFS has occurred in outbreaks reported to the CDC in the 1980s. It also occurred in an outbreak at the Royal Free Hospital in the 1950s. Other outbreaks of illnesses with similar or matching symptoms go back to the early 1900s in numerous countries. Many experts now think these illness outbreaks were really what is now called ME/CFS, even though they were given other names, such as atypical poliomyelitis, encephalitis, abortive poliomyelitis, Akureyri disease, Iceland disease and epidemic neuromyasthenia. As research is now linking a retrovirus to this disease, which appears higher in family members of CFS patients, evidence is mounting that the disease is infectious.

Myth: ME/CFS is not fatal
Fact: An inquest into Sophia Mirza’s death showed she died from acute renal failure as a result of dehydration, caused by chronic fatigue syndrome. She died at age 33. Casey Fero was diagnosed with ME/CFS at the age of nine and died at age 23 from myocarditis, which means he had heart damage. A 2006 study of 166 deceased ME/CFS patients shows an increased risk of premature death from the following:
General population average age of death from cancer – 72, ME/CFS patients – 47.8
General population average age of death from heart failure – 83.1, ME/CFS patients – 58.7
General population average age of death from suicide – 48, ME/CFS patients – 39.3

Chronic fatigue syndrome patients address the CDC ,


  1. Very powerful! Thanks for all the great explanations and timelines. Most I knew, but very well explained and written.

    Thanks, Lynn

  2. This is an excellent overview of ME/CFS. The only point I would disagree with is that we patients will have to "start over". Most of us recognized the political nature of the "contamination papers", the timing, the funding, the source. If you follow the money, you will find that Unum, the disability insurer that advises the UK equivalent of SSA on how to deny claims has targeted ME/CFS, among other diseases, to disinform the medical industry and the public about. They have been doing this in UK and the US since about 1997 and have been very successful at portraying the illness as mysterious, unsolvable and "mental". Those of us who have been following the politics as well as the science know that the near instantaneous response of the UK and European "studies" was damage control, not the search for XMRV. Likewise, the CDC, whose Chronic Viral Diseases Branch has spent the tiny amount of CFS research money they had on "studies" trying to convince everyone that CFS is caused by personality disorders and childhood sexual abuse!

    The "contamination papers" were only about PCR detection and only cautionary - a caution experienced researchers did not and do not need. The papers had nothing to say about previous XMRV studies, but the authors strove to infer they did, in their non-peer reviewed press releases, that they did. It was masterful public relations hype, but really non-science.

    The original discoverers of XMRV in CFS, the WPI, used 4 methods of testing. They have found human antibodies and most, if not all, virologists agree that lab contaminants do not make antibodies.

    Several physicians with CFS and many patients have already tried some of the three HIV drugs that Dr Ila Singh found effective against XMRV and related MLVs, in the lab. (AZT, Isentress and Viread) Some have recovered enough to go back to work part time. Some have not. Some feel they have completely recovered, but it's really too soon to know whether they will relapse.

    WPI has teamed up with CFS knowledgeable physician and CFS patient Dr Jamie Deckoff-Jones to educate open minded physicians about ARV and other treatment in ME/CFS. See Dr Deckoff-Jones's blog:

    XMRV in ME/CFS has been found in various studies from around the world, including Spain, Belgium and yes, UK! See this forum for more information on biomedical ME/CFS: See my blog:
    for more information on Unum, the "outlaw" corporation according to the CA insurance commissioner and a "rogue" company according to a BBC expose a decade ago.

  3. NAET has been found helpful for many of the symptoms of CFS