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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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  1. imdcout

    My Whole Genome Sequence (WGS)

    Hi, For any researchers, etc who may visit this forum, I wanted to provide my whole genome raw data. https://my.pgp-hms.org/profile/hu4DB380 The WGS raw data is from the company Veritas Genetics. I have not yet had this interpreted or had counseling which is part of the companies product...
  2. imdcout

    Doing a Whole Genome Sequencing (WGS)

    Hi, You may want to look at: http://www.veritasgenetics.com/documents/VG-PGP-Announcement-Final.pdf From the press release, their fee is $999 which includes interpretation and counseling. I believe you have to sign up for the PGP to get the test initially (document says service will open up...
  3. imdcout

    MFN2 -- Charcot Marie Tooth disease

    Thanks for this feedback! I had been cautioned about self-diagnosing anything based on 23andme data, and was going to wait until the other more complete genetic tests I had done came back to bring this question up to a doctor (and look at full MFN2 variants). I thought it was worth asking...
  4. imdcout

    MFN2 -- Charcot Marie Tooth disease

    Hi Sea, Similar correlations with my mothers family. Same i5008699 result (via 23andme). I know about all the perils of sharing genetic data, but if others who google this thread would like to know, my anonymous profile is at: https://my.pgp-hms.org/profile/hu4DB380 At some point, in the...
  5. imdcout

    MFN2 -- Charcot Marie Tooth disease

    Thanks, I have the mutation in rs119103264. Have not yet gone down the metabolic disorder diagnosis path yet, and wanted to ask if others had checks.
  6. imdcout

    MFN2 -- Charcot Marie Tooth disease

    Interested to know if anyone with ME/CFS have any pathogenic SNP's in the MFN2 gene (some cause Charcot Marie Tooth Disease). As some of the symptoms between CMT and CFS overlap, I was curious if, before getting a ME/CFS diagnosis, anyone was checked for CMT.
  7. imdcout

    Low overall IGG, IGG-1, IGG-3, IGE and secondary hypogonadism

    Thanks for the very detailed information. I've been trying to follow the abnormal labs tied to symptoms and lots of targeted searches for what mimics CFS. Talking to doctors with a pile of labs, unfiltered, with a less than stellar real time communications ability had not gone well for me in...
  8. imdcout

    Low overall IGG, IGG-1, IGG-3, IGE and secondary hypogonadism

    Hello, I've been working with my doctor for the better part of a year to rule out medical conditions that mimic CFS, which is my current overall diagnosis. Found lots of great pointers to articles, etc on this forum, and wanted to ask about three consistantly abnormal labs I've had as they...