I did the research and found that the University of Michigan(?) has a genetics lab that works with insurance or a sliding fee scale to do full genetic testing. I have been found to carry two markers for Ehlers Danlos as well as most symptoms for those markers, yet, the original response is that I am just a carrier not having it per se. I also have a severe MTHFR gene mutation. Also ANA testing is positive for connective tissue disease, but further testing thus far does not specify which one (I am aware that those tests are barely reliable and can change from test to test and over time). It would be interesting to see how many others diagnosed with FM have the same types of test results.
Obviously each of us is different, but the MTHFR gene mutation means b shots make me very sick, as well as taking too much B supplements (although the form my body can use is found in leafy greens), just a side note.
Several people in the CFS community are discussing the feasibility of doing Mendus studies with 23andMe or similar genetic data. I don't know much about these services but there is a good chance that we could find enough people with FM that are already genotyped for some of the things you mentioned. That would certainly make the study feasible. I've asked the CFS group to answer a few questions about how the process works with companies like 23andMe.
It would be super cool to be able to compare CFS, FM and combined CFS/FM for some of the genes/measured discussed on the two forums.
As I wrote to the other study proposal post, let's wait a bit before moving forward with these ideas and hopefully we'll get a bunch more FM members this week to join these discussion.
Can these genetic profiles be done from blood samples sent in by Drs from anywhere? Has anyone the knowledge of costs?
It's obvious a significant pool of data would inform researchers. There is a lot of information on the web about genetic testing and on genetic testing for some diseases but nothing I could find for ME/CFS or Fibromyalgia. Any information found on this would add value.
If no extensive medical research has been done in this regard, it could be extremely valuable for this community to do some to spark further research in the medical field. Our purpose here I presume.
I'm emailing the only 2 friends I know with these conditions asking them to consider joining here. Hopefully others will do the same and we'll get that bunch more members involved.