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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Participate in a CFS survey GET PAID

JanisB

Senior Member
Messages
247
Location
Central Ohio
I just filled out a questionnaire about my CFS symptoms. Even for those of you who are very sick, the questionnaire is fairly easy to do and takes about 10 - 20 minutes.

I'm urging everyone to fill it out for two reasons:
  • 1. The study is being funding by the Nat Inst of Alternative Medicine which means that they are looking at the way alternative medical treatments affect ME-CFS. I think we can make a difference and bring the benefits of the types of protocols we are discussing on this forum (methylation, B12, amygdala training, chelation, neural therapy) to the attention of the medical community if lots of us participate.

    2. The questionnaire has way too many questions about emotional states, which shows that the principal investigators are under the influence of the CDC's vision of ME-CFS as a psychosomatic illness. But there are lots of questions about physical basis as well. We need lots of patients to check off NO under depression, volatile emotions, and so forth to make sure the study results reflect the neuro-endocrine physiological basis of our illness.

Please read more on my blog of September 29 where there is a link to the website and an e-mail. http://www.cfsmethylation.blogspot.com

I already checked with the principal investigator -- irregular results on the methylation panel don't exclude participation. They are looking only at normal blood chemistries and CBC's to define participants as having 'unexplained fatigue.'