arrow13 Comments
  1. Deb
    Sep 11 - 5:13 pm

    Sounds like progress. Now what? Organize a letter writing campaign?

  2. Amy
    Sep 11 - 9:25 pm

    YAAAAAAAAAY!!!!!

    Great stuff, good quality research. I am really encouraged by this work and the Microbiome work and research here in NZ Cort. They all seem to tie in so well together too.Its very heartening and no flash in the pan stuff!! Thank you.

    • Cort Johnson
      Sep 12 - 11:03 am

      Thanks Amy, Glad to hear they’re doing that work in NZ as well. It’s nice to have top researchers focusing on ME/CFS (whatever ther results))

  3. Marco
    Sep 12 - 1:55 am

    For those interested in the details there’s a pretty good transcription here :

    http://www.mecfsforums.com/wiki/Lipkin_presentation,_CDC_Conference_Call_9/10/2013

    • Cort Johnson
      Sep 13 - 11:15 am

      Thanks Marco

  4. Gijs
    Sep 12 - 3:47 am

    Business as usual. Nothing has been found. Sound familiar to me. I think the cause of this disease will never been found. It is to complicated. Sorry. There is only one thing left: the gut. It would make sense because the gut microbe produces neurotoxines. If the problem is not in the gut i believe the only thing left is: autopsy!

    • Cort Johnson
      Sep 13 - 11:17 am

      Autopsy! The news is disappointing and I’m not ruling viruses out my any means. Finding them is obviously going to be more difficult than anticipated, though…The gut does present alot of possibilities. Time will tell.

  5. TF
    Sep 12 - 5:30 am

    The testing for enteroviruses in plasma was a colossal waste of money, Enteros can really only be accurately detected in blood during the first few weeks of infection. This has been in the medical literature since the polio outbreaks in the 40’s and 50’s. Tissue biopsy is really the only accurate method.

    I won’t take any study seriously from any lab that doesn’t branch out into lymph and gut samples

  6. Jeroen
    Sep 12 - 2:06 pm

    “The gut microbiome is were the action is”…I think Mr. Lipkin should get in touch with Prof. De Meirleir… He’s been saying this for over 10 years but somehow the one person who has more experience in this field than anyone else is always overlooked!
    I think a lot of time (and money) could be saved if all these “big star researchers” would start studying De Meirleir’s findings/theories!

    Just my humble opinion!
    Greetz from Antwerp!

    • Cort Johnson
      Sep 13 - 11:19 am

      The smaller researchers are often on the cutting-edge. De Meirleir was the first MD that I remember to really focus in on the gut area. Maybe he will be vindicated in the long run.

  7. Pendergast
    Sep 12 - 10:18 pm

    I agree with the last comments.

    There are many paths open by Drs Chia in reference to enteroviruses and KDM on the gut and the role of various bacterias so I wonder if Lipkin have taken them into consideration.

    Do not get me wrong , I dont know many details regarding techniques and procedures, also the language is a barrier for me to understand it well.

    Search active viruses and propose alterations in cytokines as biomarkers is a good purpose , but what about the Linfos ( T4/T8 – CD57 …) and the Elispot LTT for Borrelia ( wich teorically is the best way to find it in blood) or the stomach biopsies? Others nk cells..etc?

    I also think that searching for the shadows of past infections is a good idea. I hope that with time, money and prospects they can find more solid and useful evidence to justify the great inversion of money that on the other side is really needed.

    Regards!

  8. Matthias
    Sep 13 - 5:49 pm

    I’ve maintained for a long time that active viruses are not causing CFS. In most cases viruses might have triggered it. I favour the hit and run theory. It’s way past time to move on from looking for the “magical virus’ – its a waste of time, money and effort.

  9. Matthias
    Sep 13 - 6:28 pm

    The study’s findings of allergic sensitivity in the first 3 years is interesting. I’ve had a milder form of CFS for 22 years, within the first 5 years I had lots of food allergies develop, but from about year 6 or 7 of the condition the allergies started to go away.
    I’m 41. I had bad hay fever from the age of 9. About 4-5 years ago my hay fever diminished significantly. What used to be a curse for me in Spring / summer is no longer a curse. Curious.

    What are other people’s experiences?

    Btw earlier in my CFS I used lots of herbal immune activators. I reckon they made me worse, and exacerbated the allergies.

    Has anyone used the probiotic infantis? A recent study showed it reduced inflammatory markers in CFS. If the problem is in the gut, and a probiotic has shown to reduce inflammatory markers on CFS, then my next question is does the probiotic reduce symptoms? If the answer is yes then this may be more evidence for the gut.

    One last point. Lipkin’s talk mentions B cells. This gets back to a possible autoimmune aspect (maybe an autoimmune condition triggered by an initially severe viral infection – the hit and run theory). Really will be interesting to see how the rituximab trials go.

    Matthias

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