Sunday, September 27, 2009

PARTICIPATE IN A CFS study with questionnaire & GET PAID

I just participated in the following study.  It took about 10 minutes to fill out the questionnaire, a small pamphlet that came with a postage paid envelope. 

I have to admit I found the questionnaire annoying because it focused almost entirely on fatigue and emotions, nearly ignoring the neuro-endocrine aspects of ME-CFS.  Many of the questions seemed to be tricky.  One line would be something like "Fatigue interferes with my activities" and a few lines below something like "I have energy".  If I were reading fast, since I have difficulty paying attention to details, I'd often check "extreme" or "severe" before realizing the opposite was true.  

The study is supposed to be a pilot study, that is, an initial study to establish a baseline for future studies on alternative medical treatments for CFS.  I haven't yet ascertained whether the investigator is interested in exploring know the benefits with an open mind, or proving that alternative medicine is useless.  The study is run by the Huntsman Cancer Institute in Utah, Director Arthur Hartz.  Here's what Hartz's biography says:
Hartz received his PhD from the Johns Hopkins School of Hygiene in Baltimore, Maryland, in 1974. In 1982, he received a medical degree from the Medical College of Wisconsin in Milwaukee. Hartz has participated on numerous review panels, including most recently the Chronic Fatigue Committee Advisory to the Secretary of Health and Human Services and the Assistant Secretary for Health. He has also served as a reviewer for more than a dozen scientific and medical publications, including theJournal of the American Medical AssociationLancet, and Journal of Cancer Research.
So why do they have a cancer expert on the CFSAC?  

A little sleuthing -- e.g. a search on Pub Med under the Director's name -- came up with one previously published study on CFS in J Clin Psychiatry. 2005 May;66(5):625-32.  Primary investigator was Bentler SE.  

Here is the abstract: 
Department of Family Medicine, College of Medicine, University of Iowa, Iowa City, IA 52242-1097, USA.
BACKGROUND: Unexplained chronic fatigue is a frequent complaint in primary care. A prospective observational study design was used to evaluate whether certain commonly used therapies for unexplained chronic fatigue may be effective. METHOD: Subjects with unexplained chronic fatigue of unknown etiology for at least 6 months were recruited from the Wisconsin Chronic Fatigue Syndrome Association, primary care clinics, and community chronic fatigue syndrome presentations. The primary outcome measure was change in a 5-question fatigue score from 6 months to 2 years. Self-reported interventions tested included prescribed medications, non-prescribed supplements and herbs, lifestyle changes, alternative therapies, and psychological support. Linear regression analysis was used to test the association of each therapy with the outcome measure after adjusting for statistically significant prognostic factors. RESULTS: 155 subjects provided information on fatigue and treatments at baseline and follow-up. Of these subjects, 87% were female and 79% were middle-aged. The median duration of fatigue was 6.7 years. The percentage of users who found a treatment helpful was greatest for coenzyme Q10 (69% of 13 subjects), dehydroepiandrosterone (DHEA) (65% of 17 subjects), and ginseng (56% of 18 subjects). Treatments at 6 months that predicted subsequent fatigue improvement were vitamins (p = .08), vigorous exercise (p = .09), and yoga (p = .002). Magnesium (p = .002) and support groups (p = .06) were strongly associated with fatigue worsening from 6 months to 2 years. Yoga appeared to be most effective for subjects who did not have unclear thinking associated with the fatigue. CONCLUSION: Certain alternative therapies for unexplained chronic fatigue, especially yoga, deserve testing in randomized controlled trials.
PMID: 15889950 [PubMed - indexed for MEDLINE]

At least the study concluded that yoga was good for CFS :).  I've known that for years.  The problem is that people with severe cases can't do yoga classes and there are no yoga CD's that are appropriate.  I was quite fortunate that, when my condition became severe, I already had a strong yoga practice and was teaching yoga.  As a result, I knew how to work my body fully while lying on the floor.  Someday in the near future I hope to pull together some videos and CD's to guide others in doing yoga. 

I want to urge everyone reading this (who has a fatigue illness, whether ME-CFS, Lyme or Fibromyalgia) to complete this survey.  We need to establish that we are not depressed, emotionally wacked out individuals.  This is a battle we will have to fight until we win!  

Here is the description and links to the survey:
Unexplained Chronic Fatigue Questionnaire Study - Volunteers Needed

Individuals who have had severe, unexplained fatigue for at least six months and who have no serious abnormalities on medical tests are wanted for a study of chronic fatigue. Patients who qualify for the study will be asked to complete three questionnaires over a six month period. Participating in the study will not alter the treatment that your physician gives you. The purpose of the study is to evaluate whether patients treated by certain types of physicians improve faster than patients treated by other types of physicians. If you may be interested in participating in this study, please contact the study coordinator, Kathleen O’Connor at (801) 587-4741. For more information email kathleen.oconnor@ or visit our website at https://hci- as2.hci.utah. edu/CFSurvey/ app.

We will send you $25 if you complete two questionnaires, one given to you at the time you enroll and a second given to you three months later. We will send another $25 to you for completing a questionnaire six months after you enroll. If you need to get results of your laboratory tests from physicians other than the physician who told you about this study, we will give you an additional $15 for giving us the results of all of these tests.


Please add your comments here. If you have a question specific to your own condition, please e-mail me directly at I cannot give medical advice. If you want to suggest a product or therapy you think I should try, please let me know if you have used it, what you used it for, and how it helped you.