Survey's looking great! And the results have been interesting already.. most bear out what ME/CFS folks have been saying for years - note, for e.g. the 100% response for severe problems with sensory/cognitive 'overload'!
A couple drowsy points before I conk out...
One concern about the pathogen test section... This is where we may need to be more specific so that this survey has stronger value as a clinical research tool (it already has a lot). Specifically, just saying you test positive to EBV or HHV6 doesn't make clear if that was IgM or just IgG; that's a big difference to doctors/ researchers, most of whom don't take IgG seriously since 90% of the population has positive IgG to EBV and HHV6. (I don't think there's any way to use the survey to determine whether people were IgG high normal or not; "inconclusive" wouldn't fit unless it was right at the border between positive and negative. For now they could be encouraged to write that information in, I guess.) This is not necessary for the other pathogens, which are far less common than those two viruses (I'll have to double-check on CMV, though).
Another issue is when people were positive, and if they since tested negative (or if positive/negative have fluctuated). That would be of interest because of the theories of low-grade viral (or other) activity or even latency, which so many doctors dismiss too easily (especially in Lyme, but even in herpesviruses). No idea how to work that one into the survey, either...
Also - 'Lyme' is Borrelia, isn't it??
Question 7 - Again, neurologists, etc will call us on the 'temporary paralysis' and the meaning of temporary immobilization. By paralysis, do people mean the real medical definition of paralysis, which means not only being totally unable to voluntarily move a given body part, but usually also means having no involuntary movement there either, i.e. if a doctor hit your reflex point there would be no response? I'd be surprised if that's really what the respondents meant. And I'm not sure what immobilization means; if different from paralysis, does it just mean too exhausted or weak to move at all? We'll want to make sure those terms are clarified. (Especially paralysis).
By the way, Question 25 looks really interesting so far.. 3 out 4 people have parents with the ME/CFS, 1 out of 4 has a sibling with it too... 2 cases of autism in family members too... :worried:
ETA - "POWS"?! (Great acronym!) Tho I was wondering; are people separating that from post-sexertional malaise?