Both key papers on CFS retroviral involvement retracted, but Lipkin’s virus hunt proceeds

A multi-center research team is now searching for evidence of murine gamma retroviruses or other viral involvement in 150 well-defined, geographically diverse chronic fatigue syndrome patient samples. The study, led by Columbia University’s “virus hunter,” Ian Lipkin, and sponsored by the National Institute of Allergy and Infectious Diseases (NIAID) expects to have results some time in 2012.

As Dr. Lipkin has suggested, CFS “smells like a viral disease,” and his lab will be using “next generation” genetic sequencing in the CFS study. (According to him, this technology has allowed identification of 500 new viruses so far.)

On December 27, a paper by Shyh-Ching Lo, Harvey Alter, et al. (the Lo, Alter paper), published in August 2010 by the Proceedings of the National Academy of Sciences,(1) has been retracted by the authors. Their paper reported finding human MLV-like retroviruses (members of the XMRV family) in 32 of 37 Chronic Fatigue Syndrome patients and 3 of 44 healthy blood donors.

The illness called ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is a "diagnosis of exclusion" meaning there is no specific diagnistic test and first the doctor must exclude all other cause of a complaint of unrelieved fatigue to give the diagnosis using one of several internationally recognized criteria.

IMO, the new 2011 "International Consensus Criteria" (ICC) is the best. The ICC committee recommended that the name, CFS be dropped in favor of ME because the "fatigue" in the CFS name trivializes a disease that has severe debilitation as its primary symptom.

Here is the full ICC paper:

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full

Fatigue is the most common complaint brought to doctors but only about 2% of patients will have ME/CFS.

The key distinguishing symptom of ME/CFS is a peculiar type of fatigue that occurs after a physical, mental or emotional stressful event, but that becomes severe a day or two AFTER the event and may continue for a week or longer.

This extended fatigue in the past has been called "post-exertional malaise" or PEM. In the new ICC diagnostic model this severe fatigue is called PENE as described in the ICC paper:

quote

Myalgic encephalomyelitis is an acquired neurological disease with complex global dysfunctions. Pathological dysregulation of the nervous, immune and endocrine systems, with impaired cellular energy metabolism and ion transport are prominent features. Although signs and symptoms are dynamically interactive and causally connected, the criteria are grouped by regions of pathophysiology to provide general focus.

A patient will meet the criteria for postexertional neuroimmune exhaustion (A), at least one symptom from three neurological impairment categories (B), at least one symptom from three immune/gastro-intestinal/genitourinary impairment categories (C), and at least one symptom from energy metabolism/transport impairments (D).

A. Postexertional neuroimmune exhaustion (PENE pen’-e): Compulsory

This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions. Characteristics are as follows:

1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.

2. Postexertional symptom exacerbation:e.g.acute flu-like symptoms, pain and worsening of other symptoms.

3. Postexertional exhaustion may occur immediately after activity or be delayed by hours or days.

4. Recovery period is prolonged, usually taking 24 h or longer. A relapse can last days, weeks or longer.

5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.

Operational notes:For a diagnosis of ME, symptom severity must result in a significant reduction of a patient’s premorbid activity level.Mild(an approximate 50% reduction in pre-illness activity level),moderate(mostly housebound),severe(mostly bedridden) orvery severe(totally bedridden and need help with basic functions). There may be marked fluctuation of symptom severity and hierarchy from day to day or hour to hour. Consider activity, context and interactive effects.Recovery time: e.g. Regardless of a patient’s recovery time from reading for ½ hour, it will take much longer to recover from grocery shopping for ½ hour and even longer if repeated the next day – if able. Those who rest before an activity or have adjusted their activity level to their limited energy may have shorter recovery periods than those who do not pace their activities adequately.Impact: e.g. An outstanding athlete could have a 50% reduction in his/her pre-illness activity level and is still more active than a sedentary person. end quote

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