Wednesday, August 31, 2011

Survey on M.E. Treatments


  1. Hi there! I just finished taking the 4-part survey. A couple of comments:
    1. I wasn't sure what to answer for a certain category. I'll use Zithromax as an example. When I took Zithromax it felt like an awful case of flu. I believe this was a "die-off" reaction, indicating that something positive was happening. There were several other treatments to which I responded in a similar fashion, but I'm not sure how to characterize that in the survey. (ImmunePro, Vit B12 patches, a couple other things).
    2. Something that helps me is keeping my fluids up with a good electrolyte drink. I like Recuperat-ion (from Spain) and Vitalyte (U.S., formerly called Gookinade). I didn't see either of those products on your lists.
    3. I wasn't sure how to answer for things that helped a little, but not a lot, and I may have discontinued them at this point. For example, I did the full Yasko protocol for 2+ years, but it only helped maybe 20%, and was terribly expensive, so I am no longer on that protocol.
    4. You might want to add Dr Klimas's (Connie __?) new videos on how to exercise without crashing. It's based on finding your target zone, and sticking to that (for both heart rate and duration of exercise) to avoid going from an aerobic into an anaerobic state while exercising. It's been very helpful for me. I think the idea of short blocks which incorporate exercise followed by a rest period would be helpful for a lot of people, even if they are not able to do the full VO2 max testing.

    Thanks for this project, I'm looking forward to seeing the results.

  2. Thank you for your comment, Marcia. I understand the problems figuring out how to answer. I struggled for a long while trying to figure out how to word the questions, but I just could not come up with wording to suit these circumstances in such a broad survey. I am hopeful that these questions will be addressed in future surveys. I apprecite the mention of Recuperat-ion and Vitalyte. One would think I would remember at least Recuperat-ion, since I used it myself, but I did not. I'm putting that on the list of omissions for future surveys. Thank you for the suggestion, also, about Dr. Klimas' video. Perhaps a future survey may include helpful videos. Thank you for participating in the survey. The more people who participate, the more useful the results will be.


  3. Hi Patricia, finishes all 4 surveys without too much problems, since I have been ill since 1970 but got officially diagnosed in 1984 the hardest part was remembering what I used and why I stopped. Over the years you try anything they throw at you!
    With regard to the treatment section I missed the Chinese Herbal Medicine, which helped tremendously at one point. My practitioner mentioned a few times that if it was earlier in my disease he was have been positive that he could return me to at least 80 or 90% functionality. I think people who are diagnosed now and receive treatment quickly stand a better chance than we 'old-timers'. :-)
    Another thing I missed at the treatments and which my physician has a lot of success with, just not with me, are DSMO IV's. He mostly treats ME and FMS patients so over the years I have seen people improve miraculously. Just not me.I have reversed reaction to almost all medication and the side effects are even worse due to cardiac dysfunction and myocarditis, DSMO is interesting, you should def. check that out. It's relatively cheap, not patented, the only problem is it's smell. I don't find it offensive but many people do. It has a garlicky smell once it enters your body, you can radiate that fragrance for a day or 2 but than it's gone. The people in the IV room never found it offensive, or so they said. Here is the link:

  4. Thank you for your comment, Tink. I am adding Chinese Herbal Medicine and DSMO IV's to my list of treatments missed this time. I really appreciate the suggestions.


  5. Hi WD,

    Maybe I am blind, but is it possible to see the results yet or are you waiting until you have more responses?

  6. Hi Awol, it's nice to hear from you. The survey is set to run until Sept. 30, and results will not be published until the survey ends. The results will be posted here. Thank you for taking the survey.


  7. Would it be possible to extend the time for this survey, so that i can inform our members and ask them to take part?

  8. The survey will be available through Sept. 30. If you need it longer than that, please let me know. Just send an email to me at

    I really appreciate you taking an interest in this survey.

  9. Hi Wildaisy,

    As I am working on a guideline for ME, I would like to see the results of the surveys!

    Many of the treatments, including virtually all prescription drugs, are unavailable to ME patients in The Netherlands.


    Guido den Broeder
    ME patient since May 12, 1987

  10. Wow, alot I've never heard of. extensive, but also notice several things taken by alot of ME/CFS patients...maybe for future reference. Some w/negative, but many with positive results:

    Magnesium Sulphate injections,

    Electrolytes (for me...gookinaid/hydrolyte or Coconut water & on occasion even gatoraid)


    COq10 or Idenebone (sp?)

    {The above have particular relevance for the Heart }

    Others one might consider:

    Cell Signal factors

    Boluoke, others related


    Adaptogens such as Astragalus


    Reishi ( was suggested in light of XMRV -related immune damage)

    Trental ( something prescribed by Dr. Cheney)

    Magnesium Malate


    Creatine (results might be interesting...Huntington's research and patients are using it for muscles and brain )


    Molybdenum (possibly helps chemical intolerance?, possibly helps sulphur intolerance? )

    ImmunoPro/ RenewPro



    Human Growth Hormone, HGH

    Hormone Replacement Therapy,HRT, natural or synthetic



    a few that came to mind

    apology for any duplications



  11. The survey results will be posted here on this blog after the survey ends. I hope the results will be helpful to you.


  12. Thanks for your sweet words on my blog about our kids. <3

  13. September 30th has long passed, post the results please!