3/12 WSJ article re CFS

Discussion in 'Fibromyalgia Main Forum' started by mbofov, Mar 13, 2011.

  1. mbofov

    mbofov Active Member

  2. TigerLilea

    TigerLilea Active Member

    Great article, Mary!
  3. quanked

    quanked Member

    A lot said but a lot not said.

    A fear that patients will hurry up the scientists in their research? We have that much power? Has anyone heard of patients being able to hurry the research? And then mistakes were made?

    I suppose there is just too much history in this disease to cover in an article.
  4. mbofov

    mbofov Active Member

    You're right. There are flaws in the article. I was particularly struck by the one researcher who seemed to think we (CFSrs) were in a hurry because we expected results within one year. He didn't seem to get it that we have been waiting for over 25 years for serious research, and that earlier reserach re a retrovirus and CFS was squashed in the early 90's, and just how deep the distrust of the CDC et al runs because of this history with this illness.

    It would have been good if this had been brought out in the article, but I guess I was just impressed that the article was even written! Some of these things were brought out in the comments section after the article, although I don't who (besides us) reads those comments.

    [This Message was Edited on 03/14/2011]
  5. mbofov

    mbofov Active Member

    I feel for you. This is a horrible illness and one of the worst aspects is its very invisibility. I know of no other illness which is so severe which is so invisible, so that really hardly anyone else can understand or even believe it's real - it is so isolating.

    I've been doing the methylation protocol (posted on here by Richvank) off and on for close to 4 years now and I have made some progress. My crashes are lighter (though I still crash all too often) but I get over them quicker. It is progress, although way too slow. I think I had it rougher than some with the protocol because I'd been sick longer so I detoxed more and thus had to go very slow. Anyways, you might want to look into doing the methylation protocol - it might help you.

    Also, do you take magnesium? I was just reading that magnesum and malic acid can help with FM pain.

    Take care -