Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Help me to get ready for specialist appointment

Discussion in 'General ME/CFS News' started by lnester7, Jan 6, 2012.

  1. lnester7

    lnester7 Seven

    to all,

    Is there any tests or questions that you recommend I ask for my first visit to Nancy K? Any test/treatment that is out of the ordinary and that patient has to bring up??

    Thank you for the Help
  2. barbc56

    barbc56 Senior Member

    Dr. Klimas may already do these tests but the following were very helpful for me.

    Ferritin level not just iron level. It can cause the same symptoms. Mine was so low and because I have RLS, and absoption problems from IBS, I had a nine hour infusion of iron which helped immensely. For RLS you need at least a reading of 120. I was 19 and it went up to 288. There's a wide range of what is normal, but depending on your health different ranges may be recommended for different health conditions.

    B12 and Vitamin D as I was low in both so needed supplementation. You have to be careful with the vitamin D. Even though I was deficient, I started with a weekly megadose of D and developed a kidney stone which may have been related. I now take the daily dose.

    Sleep study. I have sleep apnea as well as RLS and little deep stage sleep. I think everyone with our DD, should have this as most of us have some kind of sleep disorder.

    These were definitely helpful for me. Dr. Klimas probably knows the above but a lot of doctors don't do these. tests.

    As my neurologist said, while the above helped, I will always have the ME/CFS and fibromyalgia.

    Barb C. :>)

    While all these are now under control, it hasn't cured the CFS/ME but I do feel better.

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