RE your criterion for diagnosis document rejects my severe ME

I have severe ME and do not pass your criterion test https://d3n8a8pro7vhmx.cloudfront.net/meadvocacy/pages/22/attachments/original/1478717636/ICC_Questionnaire_Nov_2016.pdf?1478717636 MY symptoms are thus.... Not passing Section 3 ---------------------------- I have the flu response to exertion very clearly and strongly after a very small amount of activity. I did get nausea at the start but not much. My fluish is not a virus its a reaction to activity. I tend to not get viruses when people around me do. I am very sensitive to anything that requires energy eg sound light etc but I have not experienced any other kind of sensitivity. It would be better to talk about needing to wear earplugs and blindfolds to avoid stimulation or energy usage as a criterion. People dont come out of the gym asking for a pair of earplugs or with the flu. Also the reaction to overexertion peaks 3 days after the activity. This is universal why not have this in? Pain criterion ------------------ I have very little pain. Occassional headaches yes behind the eyes, but people say pain is an essential symptom & cut me out when I have incredibly clearly fluish symptoms in response to activity of any sort. ❏ Headaches : such as chronic, generalized headaches often involve aching of the eyes, behind the eyes or back of the head that may be associated with cervical muscle tension; migraine; tension headaches ❏ Significant pain can be experienced in muscles, muscle-tendon junctions, joints, abdomen or chest. It is non inflammatory in nature and often migrates. In other words have generalized hyperalgesia, widespread pain (may meet fibromyalgia criteria), myofascial or radiating pain. Definitions: Hyperalgesia : increased sensitivity to pain Myofascial : pertaining to a muscle and its sheath of connective tissue, or fascia Hope this helps Michelle Wyatt


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  • commented 2017-08-01 14:07:00 -0400
    This questionnaire is based on the ICC and as such uses their information. If you answered no in section 2, 3, or 4 you may have atypical ME.
    Atypical myalgic encephalomyelitis​: meets criteria for PENE (section 1) but has a limit of two less than required of the remaining criterial symptoms. Pain or sleep disturbance may be absent in rare cases.

    This is a general guide. More information can be found in the ICC Primer which has excellent information about testing and diagnosis.
  • tagged this with Important 2017-07-25 17:03:02 -0400
  • published this page in Suggestion Box 2017-07-25 17:02:44 -0400