Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
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REDD/CFS - interesting

Discussion in 'General ME/CFS News' started by Lily, Dec 5, 2009.

  1. Lily

    Lily *Believe*

    I just thought you might find this interesting - Ken Wilber telling folks about his illness......somehow it just sounds so much better as REDD, doesn't it? He does mention it as CFIDS, but only in passing. Maybe this is something you can say if you're concerned about telling others you have CFS. I like it. It even sounds better then MS to me. Especially since I don't fit the description of what most people expect when you say you have MS.


  2. Kati

    Kati Patient in training

    I don't know who Ken Wilber is, but I really enjoyed his way of explaining the disease, without having the reader making a judgement of any kind.

    Thanks for sharing.
  3. Samuel

    Samuel Senior Member

    Interesting, but a little confusing.

    I presume the Harvard retrovirus was a mistake.

    Also, if REDD has such a good test, why aren't we all getting this test? And why wasn't that the biomarker many (mostly denialists?) say didn't exist? And could we take supplemental RNASE or something that inactivates the wrong version or something?

    Also, from a political standpoint, it's not clear whether or not his dismissal of yuppie depression is wise.
  4. dannybex

    dannybex Senior Member

    This was interesting...

    "in REDD, the mechanism that produces RNase is damaged by any number of causes, the most notable being environmental toxins. in 1985, in incline village, north lake tahoe, there was what has now become a very famous outbreak of REDD, where over 200 people came down with it..."

    Wasn't Erik Johnson (a.k.a. ErikMoldWarrior) part of that outbreak, and didn't he find recovery/remission by avoiding mold, an 'environmental toxin'?

    "as for what specifically triggers the damaged RNase, nobody knows, although environmental toxins are a leading factor. i learned from a researcher last week that harvard thinks they found a retrovirus."

    From 2002...?

    I too wonder...what happened to that discovery...or did it fizzle?

    Perhap Cort has some of the answers...

    Thanks for posting it loldershaw.

  5. Lily

    Lily *Believe*

    Call it REDD or CFS/ME

    I'm aware that RNase-L fragmentation/deregulation has been a hallmark of CFS, and had been considered the closest thing to a biomarker. However the deregulation also occurs in MS as well and other auto-immune diseases too, if I'm not mistaken. Perhaps expressed in a different form of deregulation, Im not sure.

    Wilbur's mention of the retrovirus was interesting, since this article was written in 2002 and he obviously wasn't referring to DeFritas (sp?). Overall I just thought it was curious that in his description of the disease he chose to call it REDD and not CFS - he labeled those he considered at a different stage of the disease as CFS ...or did he use the CFIDS term....anyway, he managed to describe it without calling attention to 'fatigue', and I thought that was sort of, well....creative, I guess:) Or perhaps in 1988 it was initially called REDD before it became CFS. I read Oslers Web, but cant remember now

    Wilber describes his struggles to cope with the disease when he says . fortunately, i had cultivated a lifestyle that never required a body :)-), so i had a pretty good middle ten years (roughly, all of the 1990s)sometimes i do well with it, sometimes not. much of the time i am fortunate, and there is radiant sahaj, with a painful body spontaneously arising in an ocean of blissful emptiness. at other times, there is just the painful body. in all cases, my I is free and radiant, but my me is f&^*ked, and it's just a matter of which side of the identity street you want to play on

    I have to decide every day which side of the identity street that Im going to play on sometimes several times a day..its a full time job to keep myself on the shall we say 'sunny' side of the street and not the other side that starts with an f;).

  6. mezombie

    mezombie Senior Member

    East Coast city, USA
    Mary Schweitzer identified herself as having REDD at one point.

    Many people with ME/CFS thought it was a good marker of the disease from the mid-90s to the present. As a matter of fact, Judy Mikovitz searched for XMRV precisely because many ME/CFS patients had RNase-L dysfunction.

    But her study showed that one can be XMRV+ and have normal RNase-L.

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