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CDC doesn't study CFS much less XMRV

Discussion in 'XMRV Research and Replication Studies' started by citybug, Jul 2, 2010.

  1. citybug

    citybug Senior Member

    The CDC can't find CFS much less XMRV.

    The CDC studies "chronic unwellness" not CFS. They plan to analyze their findings in 2011. Here are their criteria for the Bibb county registry.
    • Current severe fatigue persisiting for one month or longer
    • One of the following for at least one month:
    - Unrefreshing sleep,
    - Problems with memory or concentration, or
    - Unexplained joint or muscle pain in the lower extremities
    • Age: 12 to 59, inclusive
    • Body mass index (BMI) les than 40.0

    Here is a description of the Canadian Criteria:

    The Canadian Expert Consensus Panel has published a medical milestone, the first
    clinical case definition for the disease known as myalgic
    encephalomyelitis/chronic fatigue syndrome. This definition is clearly a vast
    improvement over the CDC's 1994 Fukuda criteria, which led to misunderstanding
    in both research and treatment modalities by making "fatigue" a compulsory
    symptom but by downplaying or making optional the disease's hallmark of
    post-exertional sickness and other cardinal ME/CFS symptoms.

    In sharp contrast to the Fukuda criteria, this new clinical case definition
    makes it compulsory that in order to be diagnosed with ME/CFS, a patient must
    become symptomatically ill after exertion and must also have neurological,
    neurocognitive, neuroendocrine, dysautonomic, and immune manifestations. In
    short, symptoms other than fatigue must be present for a patient to meet the
    criteria. This case definition, which incorporates some of the current research
    on dysautonomia, cardiac, and immune problems, was published in the Journal of
    Chronic Fatigue Syndrome, Vol. 11 (1) 2003.

    It is summarized as follows:

    1. POST-EXERTIONAL MALAISE AND FATIGUE: There is a loss of physical and mental
    stamina, rapid muscular and cognitive fatigability, post-exertional fatigue,
    malaise and/or pain, and a tendency for other symptoms to worsen. A
    pathologically slow recovery period (it takes more than 24 hours to recover).
    Symptoms exacerbated by stress of any kind. Patient must have a marked degree of
    new onset, unexplained, persistent, or recurrent physical and mental fatigue
    that substantially reduces activity level.

    2. SLEEP DISORDER: Unrefreshing sleep or poor sleep quality; rhythm disturbance.

    3. PAIN: Arthralgia and/or myalgia without clinical evidence of inflammatory
    responses of joint swelling or redness. Pain can be experienced in the muscles,
    joints, or neck and is sometimes migratory in nature. Often, there are
    significant headaches of new type, pattern, or severity. [Editor’s note:
    neuropathy pain is a common symptom and should be added here as well.]

    4. NEUROLOGICAL/COGNITIVE MANIFESTATIONS: Two or more of the following
    difficulties should be present: confusion, impairment of concentration and
    short-term memory consolidation, difficulty with information processing,
    categorizing, and word retrieval, intermittent dyslexia, perceptual/sensory
    disturbances, disorientation, and ataxia. There may be overload phenomena:
    informational, cognitive, and sensory overload -- e.g., photophobia and
    hypersensitivity to noise -- and/or emotional overload which may lead to
    relapses and/or anxiety.


    AUTONOMIC MANIFESTATIONS: Orthostatic Intolerance: e.g., neurally mediated
    hypotension (NMH), postural orthostatic tachycardia syndrome (POTS), delayed
    postural hypotension, vertigo, light-headedness, extreme pallor, intestinal or
    bladder disturbances with or without irritable bowel syndrome (IBS) or bladder
    dysfunction, palpitations with or without cardiac arrhythmia, vasomotor
    instability, and respiratory irregularities.

    NEUROENDOCRINE MANIFESTATIONS: loss of thermostatic stability, heat/cold
    intolerance, anorexia or abnormal appetite, marked weight change, hypoglycemia,
    loss of adaptability and tolerance for stress, worsening of symptoms with stress
    and slow recovery, and emotional lability.

    IMMUNE MANIFESTATIONS: tender lymph nodes, sore throat, flu-like symptoms,
    general malaise, development of new allergies or changes in status of old ones,
    and hypersensitivity to medications and/or chemicals.

    6. The illness persists for at least 6 months. It usually has an acute onset,
    but onset also may be gradual. Preliminary diagnosis may be possible earlier.
    The disturbances generally form symptom clusters that are often unique to a
    particular patient. The manifestations may fluctuate and change over time.
    Symptoms exacerbate with exertion or stress.

    This summary is paraphrased from Dr. Kenny van DeMeirleir's book Chronic Fatigue
    Syndrome: A Biological Approach, February 2002, CRC Press, pg. 275.

    The CDC Bibb county register does rule out:
    Bibb County does rule out:
    • Pregnancy within past 12 months
    • Stroke with no full recovery
    • Parkinson’s disease
    • Chronic obstructive pulmonary disease (COPD) or congestive heart failure
    • Insulin-dependent diabetes
    • Uncontrolled diabetes type II (HgbA1c < 9%)
    • Anemia
    • Uncontrolled hypo- or hyper-thyroidism
    • Uncontrolled hypertension (BP > 140/90)
    • Sickle cell anemia
    • Cancer within 5 years (except basal skin or currentl receiving chemotherapy
    • Untreated depression
    • Substance abuse problems within the past 2 years
    • Anorexia nervosa or bulimia nervosa within the past 5 years
    • Schizophrenia, bipolar I or II, or dementia
    • Hepatitis B or C

    All providers should complete a medical history.
  2. citybug

    citybug Senior Member

    It's time to get rid of the "Reeves" definition.
    Here is the misdirection of CFS research dollars that results from this loose definition:

    CFS 5-year Strategic Plan

    Centers for Disease Control and Prevention CFS Public Health Research Program 5-year Strategic Plan
    (October 2009)

    III. CFS Public Health Research Program Activities - How CDC plans to meet its Goals
    Population-based surveillance
    First Follow-up Study of CFS and Chronic Unwellness in Georgia
    Field work on the first follow-up study of CFS and chronic unwellness in Georgia was completed in August 2009. Approximately
    80% of those who participated in the baseline survey also participated in the follow-up study. Analysis, interpretation, and
    presentation of findings will occur through early 2011.
    Focus of initial analyses will be on information that can be used to
    modify provider education activities.

    Determine knowledge, attitudes, and beliefs concerning CFS and the effect on clinical course of the illness
    Evaluate direct and indirect economic impact of CFS
    Evaluate association of barriers to healthcare utilization with illness course
    Evaluate association between medical history, exercise patterns, tobacco use, and CFS
    Refine analysis of allostatic load, cortisol, alpha amylase, inflammation index, and genetics of CFS
    Evaluate incidence of metabolic syndrome and diabetes
    Second Follow-up Study of CFS and Chronic Unwellness in Georgia
    Field work on the second follow-up study of CFS and chronic unwellness in Georgia will begin in mid-2010 and continue into
    2011, with analysis of results occurring through 2012.

    Identify defined subsets of persons with CFS
    Modify provider education activities, evaluate effects of education activities, and plan intervention trials
    Explore associations between clinical parameters, laboratory biomarkers, psychosocial, and environmental factors and the risk
    of incident CFS, persistent or progressing CFS, and recovery from CFS
    Measure the contribution of electrophysiologically identified sleep disorders to CFS and to the clinical course of the illness
    Mayo Clinic Rochester Epidemiology Project
    Retrospective collaborative study will utilize medical records from the Rochester Epidemiology Project to study risk factors
    associated with the incidence of CFS and clinical course of the illness in the population of Olmstead County. Work will begin
    in late 2009 with analysis, interpretation, and publication of data occurring through 2011.

    Categorization of risk factors associated with CFS
    CFS Among Adolescents in Foster Care
    The Georgia Department of Human Services has requested CDC, in collaboration with Emory University, to determine the
    relevance of unwellness among adolescent wards of the Georgia foster care program as these children manifest an excess of CFS
    risk factors.
    Planning will begin in late 2009, field work on the initial survey will begin in 2010, initial analyses will be
    complete by late 2010, and intervention studies will occur through 2013.

    New Publication: 1994 CFS Case Definition Criteria Validated
    New Publication Linking Sexual Abuse and CFS

    Clinical Intervention Studies
    Clinical behavioral intervention studies will be conducted in collaboration with Emory University School of Medicine, Bibb
    County Medical Society, Mercer School of Medicine, Mayo Clinic, and UK National Health Service. Anticipated protocol
    development will begin in late 2010-2011, with studies continuing through 2013.

    Evaluate cognitive behavioral therapy and graded exercise in participants
    Stratify impact of intervention by various parameters including duration of illness, onset type, early life stress,
    psychiatric comorbidity, cortisol responsiveness, and fMRI changes

    Results from the CFS adolescent foster care study will be used to plan a large-scale longitudinal intervention study that
    will occur through 2013.

    Identify and target specific risk factors for CFS

    Pharmacologic intervention trials will be conducted in collaboration with partners that may include pharmaceutical companies
    and academia. Anticipated protocol development will begin in 2010-2011 and studies could occur through 2013.

    Target pathophysiologic pathways involved in CFS
  3. citybug

    citybug Senior Member

    Things that are wrong with the CDC XMRV study

    from Blood from a Stone, Suzanne D. Vernon, PhD, The CFIDS Association of America

    From what I can decipher, the samples were drawn from 18 people identified through a Georgia registry who met criteria described in the paper that is different from 1994 international CFS criteria. Eleven CFS cases and matched controls were identified from the Wichita studies, although it is not clear if these samples came from the longitudinal studies or the clinical study, and 22 CFS cases and controls from the Georgia community-based study. There is little indication that these three cohorts are comparable in regard to CFS definition, as each cohort was selected using different definition. The authors strenuously object to application of the Canadian case definition in other studies, stating that, physical findings in persons meeting the Canadian definition may signal the presence of a neurological condition considered exclusionary for CFS. Yet the physical findings listed are those commonly experienced by CFS patients, and one (tender lymphadenopathy) is a case-defining symptom of the 1994 criteria.

    Further, the samples from these three study cohorts were collected using different types of tubes, each of which has a distinct way of being processed. As if this werent bad enough, none of the blood tubes used were of the same type used in the Lombardi study. (They used tubes containing sodium heparin that are intended for use with virus isolation). The blood tubes from the 18 Georgia registry patients are designed to collect whole blood and preserve nucleic acid; it is not clear where the plasma came from for these subjects since plasma cannot be obtained using these blood tube types.
  4. Athene


    “physical findings in persons meeting the Canadian definition may signal the presence of a neurological condition considered exclusionary for CFS

    The bottom line here is that the CDC defines CFS as not a physical illness. If that is their deifnition then by default they will not find a physical cause.
  5. citybug

    citybug Senior Member

    The CDC found they could statistically mix fatigue less than 6 months, fatigue more than 6 months and cfs and so they did and use the resulting conglomeration for their studies.

    This project utilized international epidemiological and clinical research data to test construct validity across diagnostic categories, health-care settings and countries. Relevant demographic, symptom and diagnostic data were obtained from 33 studies in 21 countries. The subjects had fatigue lasting 1- 6 months (prolonged fatigue), or > 6 months (chronic fatigue), or met diagnostic criteria for chronic fatigue syndrome.

    Method: Common symptom domains were derived by factor analytic techniques. Mean scores on each symptom factor were compared across diagnostic categories, health-care settings and countries.
    Results: Data were obtained on 37 724 subjects (n=20,845 female, 57%), including from population-based studies (n=15,749, 42%), studies in primary care (n=19,472, 52%), and secondary or specialist tertiary referral clinics (n=2,503, 7%). The sample included 2,013 subjects with chronic fatigue, and 1,958 with chronic fatigue syndrome. A five-factor model of the key symptom domains was preferred (‘musculoskeletal pain/fatigue’, ‘neurocognitive difficulties’, ‘inflammation’, ‘sleep disturbance/fatigue’ and ‘mood disturbance’) and was comparable across subject groups and settings. Although the core symptom profiles were similar, some differences in symptoms were observed across diagnostic categories, health-care settings and between countries.

    Conclusions: The construct validity of chronic fatigue and chronic fatigue syndrome is supported by an empirically derived factor structure from existing international datasets.
  6. citybug

    citybug Senior Member

    From CDC study:
    Mulvs (mouse retroviruses related to XMRV and used for testing in the CDC study) and gammaretrovirusescause like XMRV such as Feline Leukemia Virus cause neurological illness. MECFS doctors and patients describe MECFS as a neurological illness.
  7. Elliot


    Leicestershire, England.
    Crikey that criteria is quite bare bones isn't it? (the CDC's)
    I fit into the canadian criteria and the cdc's but..a hell of a lot of people could be caught within the CDC criteria. Fatigue & one symptom sounds a bit inane.
  8. Mithriel

    Mithriel Senior Member

    After saying that ME, a neurological disease, was the same as CFS, now they turn round and say that CFS has no neurological symptoms.

    SW said he was going to make ME disappear. Fine, but patients with ME are still here, still suffering and possibly have XMRV.

    Why don't they crawl away, study and treat people with tiredness (they deserve to be helped too) but let the rest of us go!

    This sleight of hand, making a recognised neurological disease disappear from the medical scene, is the equivalent of ethnic cleansing. We are here but ignored, marginalized, our existence denied. I have never understood why.

  9. floydguy

    floydguy Senior Member

    Patient Training?

    Perhaps we should train each other on how to present our symptoms to the medical community? Clearly one of the problems is that many of the symptoms are "nebulous". However there are tests that are solid. Everyone should start with those symptoms that are (or can be supported by labs or other documented evidence). As has been said ad nauseam, the concept of fatigue has got to go. And it should not be the first symptom presented to a doctor for the first time, IMO.

    Personally, I am not fond of PEM as a litmus test. PEM is not a major factor for me. Most of my worst symptoms are neurological.
  10. *GG*

    *GG* senior member

    Concord, NH
    Because this would take real research and dare I say Researchers?! And that is going to take real money besides the trivial amounts they spend in the US!
  11. *GG*

    *GG* senior member

    Concord, NH
    Not sure that I am fond of PEM as a litmust test either but PEM is a MAJOR factor for me.

    This is what keeps me from doing lots in life! I am still at work, but since I don't know how much Exertion is going to sideline me for days. I pretty much refuse to do anything very strenous, otherwise I could be out of work for a week due to one days' worth of fun! Life sucks!! It's all about trying to be "healthy" enough to get to work every day and resting so I can do that.

    Once in a while I will say "what the Fuck" and enjoy some life,, but I pay for it in more ways than one!
  12. Dolphin

    Dolphin Senior Member

    That study was from 2009. They were mixing symptoms from one month since the 2005 papers.

    Also the empiric criteria don't actually require fatigue - if you have some "reduced activity" you can qualify (you can have "reduced activity" if one is depressed or one is a "couch potato").

    I read that 2009 paper and I don't think it proves much.
  13. *GG*

    *GG* senior member

    Concord, NH
    By the way I like the title: CDC doesn't study CFS much less XMRV

    I think perhaps we should "Control the Disease" known as the CDC and put them out of commission?!

    Perhaps they need to be investigated and reorganized to have a healthier culture, much like what was done at NASA and other gov't agencies after major oversights/failures on their watch!
  14. Dolphin

    Dolphin Senior Member

    But to be included the referred registry patients are then assessed to see if they satisfy the empiric criteria. Not that they are very strict criteria.
  15. Dolphin

    Dolphin Senior Member

  16. ixchelkali

    ixchelkali Senior Member

    Long Beach, CA
    Exactly. That's why they keep insisting that there are no biomarkers for it, in spite of numerous studies finding biomarkers; for instance, specific profiles of immune system dysfunction. And then they tell doctors not to test for immune systems dysfunction.

    When I first read that statement in the report, besides wanting to scream "That's because it IS a neurological condition, you ninnies!" I was struck by the lack of even internal logic of it. Physical findings in the Fukuda criteria (fatigue, headache, tender lymph nodes) can signal the presence of conditions that are considered exclusionary for CFS, too. Non-Hodkins lymphoma, hypothyroidism, lupus, etc. etc. That's why you exclude them. That's why they call CFS a diagnosis of exclusion. You ninnies.

    Did they have even one person familiar with CFS among the peer reviewers?
  17. bakercape

    bakercape Senior Member

    Cape Cod. Mass
    DR Komaroff

    Just went on record that CFS is Neurological. He's studied CFS soooo much more than anyone at the CDC and has been published way more.
    This is like saying anyone that pees more than usual willnot be included in a diabetes study because they may just have a small bladder. The backward thinking has to end.
    Can't we do a class action lawsuit against the goverment or CDC. I mean they divert funds, waste funds and subvert science. Haven't agencies been sued for less. I think we should all get at least 10 million for pain and suffering and we could all donate a lot of the money to do real research.:D

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