This is a good and useful effort. I'll participate as best I am able. I've been diagnosed with ME/CFS and Fibomyalgia though Dr's lack conviction for well know reasons. I present with symptoms of both.
I would like to see these areas researched and addressed:
Vitamin effects, specifically B-12 and D, as compared to standard levels.
effects of alcohol consumption of symptoms short term and over time,
biochemical areas that have been identified as potentially significant,
usefulness of diets people have used,
more medically based information on those who claim to have been 'cured'.
This is a very preliminary list. Many good suggestions for further research are on Cort Johnson's site - Health Rising.
Look forward to getting started. Best of luck and congratulations on the initiative.
My pleasure. And thank you for throwing out so many great suggestions.
Except for the "biochemical areas that have been identified" I think each is a fairly straightforward project that we could work out the details for and try to test here. Just not sure which you meant concerning the biochemical areas.
I'm going to let this sit here for a few days before trying to tease out solid study ideas as the FM community hasn't really been advertised much yet and I'm hoping this week we'll get a influx of people who can contribute to the conversation.
You bring up another really important point. Discussions like I'm proposing here are not new and using those other resources, particularly Cort Johnson's site is highly recommended. Mendus is here to actually run the studies. Lengthy discussion are totally fine here but there's no reason to ignore similar things Cort has already dealt with. If ideas have been discussed there then there is no need to reiterate everything here. Synopses and links are great and then we can get down to actually designing the study.
Thanks again and let's hope traffic increases in the coming week,
I've been commenting on the CFS community (lots of ideas built up over years of frustration!). I also have Fibromyalgia and PoTS. There is a lot of crossover. Are they really different conditions or different aspects of the same condition?
It would be really useful for someone like me if some of the studies used the same method across the different conditions. Eg if there's an identical method for diet studies you could then pick out which of the 3 diagnoses my pattern of results is most similar to. Or perhaps there's no significant difference across the diagnostic groups?! Or am I only similar to others who have this trio diagnosis (as a subgroup or Comorbidity)?
This wouldn't be much use until there's a fair number of people with Fibromyalgia or PoTS though.
The idea is to keep the protocols as similar as possible across the different communities. For FM I added a few different symptoms to the diet study. They probably could have been included in the CFS version as well but I didn't want to overwhelm people before I knew how they'd do.
I think we're a ways away from what you're suggesting about sub-types and distinguishing between closely related disorders. If we get anywhere near that I'll be incredibly happy.