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  • These little bioreactors use the oxygen we breathe to turn food and drink into energy and to perform over 500 other important chemical reactions in the cell.

  • 510 patients with unexplained chronic fatigue were identified. 265 of these conformed to one or more case definitions. 216 were invited to join the register; 160 agreed. 96.9% of participants conformed to the CDC 1994 (Fukuda) definition; the Canadian definition defined more precisely a subset of these. The addition of an epidemiological case definition increased case ascertainment by approximately 4%. A small-scale study in a specialist referral service in East Anglia was also undertaken.

  • clinical presentation, immune phenotype, gene expression and virus infection among ME/CFS patients and MS and population controls frequency-matched by geographical area of residence, age-group (within 5 years), and sex
  • Clinical samples will be collected for studies of NK cell function virology (herpesvirus infection), and gene expression and for banking as a resource for future ME/CFS research.
  • Hypothesis: ME/CFS is associated with immune dysfunction, which results from - or predisposes to - herpesvirus infections

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  • The Solve ME/CFS Initiative is currently doing the preliminary work of collecting full medical histories and defining the diagnostic criteria that will be most useful for researchers going forward. As a result, we may be contacting some BioBank participants to collect more information and verify their diagnosis. These measures will ensure that we are able to conduct reliable and reproducible research that can make a lasting difference for our patients and their families.

  • To promote the interpret-ability of research, NIH will create Common Data Elements to be used in all NIH funded ME/CFS research.
  • A plan for communication with stakeholders is also in preparation
  • Dr. Whittemore said that NIH will issue a Request for Information on research priorities, which will give the public a chance to weigh in on NIH’s direction.

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May 19, 16

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  • Some Biobank participants are asked to have repeat assessments and samples taken, thus forming a long-term cohort of individuals enabling clinical and laboratory findings to be correlated with factors such as the presence of viral infections, gene expression, and immunological status.

  • In keeping with our finding that physicians were slightly more likely than others to consider states of being to be diseases,  Campbell et al2 found no difference among non-medical faculty, secondary school students, academic internists and general practitioners on  how they perceived illnesses due to infections, but found that doctors considered more non-infectious conditions to be diseases.

  • Method: We used a dataset from a large-scale Canadian national health survey, the Canadian Community Health Survey (CCHS). The sample consisted of 115 071 subjects aged 18 years and over, randomly sampled from the Canadian population. The survey interview recorded self-reported diagnoses of various long-term medical conditions and employed a brief predictive interview for MD, the Composite International Diagnostic Interview Short Form for Major Depression. Logistic regression was used to adjust estimates of association for age and sex.
  • Results: The conditions most strongly associated with MD were chronic fatigue syndrome (adjusted odds ratio [AOR] 7.2) and fibromyalgia (AOR 3.4). The conditions least strongly associated were hypertension (AOR 1.2), diabetes, heart disease, and thyroid disease (AOR 1.4 in each case). We found associations with various gastrointestinal, neurologic, and respiratory conditions.
  • “Now I’d like to ask about certain long-term conditions that have lasted or are expected to last 6 months or more and that have been diagnosed by a health professional . . . Do you have . . . (interviewer inserts the name of each specific condition).” The CCHS did not include clinical confirmation of the validity of the self-reported diagnoses. However, since the items inquiring about these diagnoses all referred to those made by health professionals, the self-reported diagnoses should have represented clinical diagnoses and not merely survey subjects’ opinions.

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