arrow30 Comments
  1. steve
    Apr 03 - 5:39 pm

    I realize that many of these Doctors are working on different hypotheses but maybe instead of just sharing information once every two years we could get some of them to actually work together….like it happens in the real world. The idea that there are so many different bio banks illustrates this problem….the whole is greater than the sum of the parts..

    • Cort Johnson
      Apr 04 - 3:57 pm

      Agreed…The multi-site does that kind of :). Lots more collaboration needed thought. Suzanne Vernon has been trying for years.

  2. Tim Vaughan
    Apr 03 - 5:40 pm


    Thanks for the great summary. Is the CFI subset/factor data available anywhere for us to peruse?

    • Cort Johnson
      Apr 04 - 3:57 pm

      Not yet. I imagine it will be published some time this year.

  3. Gijs
    Apr 04 - 4:01 am

    I don’t think the gut is the cause of ME. It is secondary but important. I have had problems with my gut for years. The last 2 years my gut problems were almost gone, but i am still sick. But i must say that most ME patiënts i know have gut problems (from time to time, all there live) before they got ME.

  4. Diane
    Apr 04 - 5:52 am

    Did I read this correctly and Lenny Jason is actually going to infect some of the students with IM? Surely a study like that would not pass the ethics committee, when there’s a supposition involved that some of them could go on to have lifelong problems with ME. I would be happy with him studying people who get it naturally, but not infecting them.

    • Cort Johnson
      Apr 04 - 3:58 pm

      I apologize for my unclear wording. The students thought he was going to infect (and were happy with that :)) but he is only taking their blood and then watching to see who gets sick naturally.

      • Betsy
        Apr 04 - 5:43 pm

        That cracked me up that they were willing to get sick with mono for 100 bucks. Thanks for the bits of gut humor too – I can always use a chuckle.

  5. Diane
    Apr 04 - 5:56 am

    Cort, you said that there were very few studies into mitochondria dysfunction. Here are a couple from the UK. (Norman Booth, one of the co-authors, is a member of our local ME group as his wife has the illness.) They feel they have found some very distinct biomarkers.

    • Cort Johnson
      Apr 04 - 4:04 pm

      Actually your point kind of substantiates mine. There are some studies but none by ‘researchers'; ie people who make a living doing research.

      Booth et al may be perfectly right but until their findings are validated by researchers the research community trusts they’ll never make to the ‘big time'; that’s why I’m glad the CFI is taking up the mitochondria. They can translate those kinds of results into something really significant.

      • John Bochenek
        Apr 05 - 6:54 am

        It kind of reminds me of the movie “Lorenzo’s Oil”. There are some people who are desperate enough that they will accept an answer they believe to be right, regardless of where it is found or who finds it. Other people need to see it come from a source that is within a defined group or profession.

  6. Anne
    Apr 04 - 9:19 am

    Great overview. thanks! I wish we could fast forward time and see the results soon! I love that they are studying college students and tracking mono. Brilliant idea

  7. Marco
    Apr 04 - 10:04 am

    Very interesting Cort.

    Good to see this level of infrastructure/priming going on which should be of immense benefit going forward.

    Just one question. You refer to a ‘neuroinflammatory’ sub-set. Is this your terminology or the researchers’?

    • Cort Johnson
      Apr 04 - 4:07 pm

      It’s all mine :) However a Japanese study did find evidence of widespread neuroinflammation in ME/CFS. I’ll get to that later.

      • Cort Johnson
        Apr 05 - 11:15 am

        A little backtrack here. They called the ‘factor’ the neuroinflammatory group – I don’t really know how factor analysis works but I assume they identified a large group of people with ME/CFS with these issues and they called it the Neuroinflammatory (group).

  8. Sarah R.
    Apr 04 - 12:26 pm

    Huge gratitude for this excellent overview, Cort. Thank you.

    Diane, I think what Jason is doing is just following the students, knowing that typically in a year, 10% of freshmen are likely to contract mono. Then he will follow those to see which of them end up with ME/CFS. I’m sure no university research committee would allow students to be infected with pathogens; and even if they did, Lenny Jason would be the last person on earth to do such a thing.

    Finally, I’ve had some gut problems that were severe for maybe 4 months years ago; but in general my gut functions fine. I feel fortunate because of that. And because of that, I haven’t paid all that much attention to the gut biome studies. However, recently I read a study suggesting that the probiotic b. infantis 35624 positively affected immune function, inflammation (C-reactive protein counts) and all kinds of stuff. Here’s the study:

    I’ve taken plenty of probiotics in the past, but I wanted to report here that taking b. infantis 35624 (sold only as the Align brand because of a patent on this particular probiotic) has significantly impacted my sense of well being. I feel that I now belong in this body. I’m more relaxed, less anxious and less depressed. Less achy, and I’m sleeping better. I have more energy. It feels miraculous to me.

    So now I’m thinking gut permeability and all the microbiome issues may be central to many of us. At least I hope so. At least that part of it may be fixable.

  9. Diane
    Apr 04 - 12:39 pm

    Thanks Sarah. It was the comment that ‘some are enrolling ready to get infected with IM’ that had me worried! Re-reading it for the tenth time, I’m wondering if Cort meant that the students were so desperate for the money that they they enrolled even though they had the misconception that they would be given the infection, not just watched to see what happened if they got it.

    • Cort Johnson
      Apr 04 - 12:45 pm

      Yes, they had the misconception that they would be given IM – and were willing to do it for $100 :). They’ll simply be giving blood. I made the sentence clearer.

      • Diane
        Apr 04 - 5:12 pm

        Thanks Cort!

        It’s amazing what penniless students would do. Young and fearless and no thought for the future.

        • Cort Johnson
          Apr 05 - 11:13 am

          Yes – the invulnerable ones!

  10. K. Brown
    Apr 04 - 2:51 pm

    Hi Cort,
    These issues are helpful to all sufferers without doubt. The point we’re at now is exponentially ahead of where things were only a few years ago, it’s very good to have so much serious and expensive things happening for us.

    I wondered if you were able to ask anyone at the seminar what their views were of the EBV findings from the German study. I think that it must mean it’s a genetic trait we inherit that keeps us from clearing the EBV so many have but don’t also have CFS/ME. This study has me salivating for someone to take it to the next level or have some peer review etc for accuracy etc.
    What are the experts saying?

    • Cort Johnson
      Apr 04 - 4:10 pm

      I don’t know why I didn’t ask but I didn’t unfortunately..(whoops).

      I did pass it by several EBV experts before I published the blog, though. They had some questions with the interpretations (ie that there was latency associated replication – something they didn’t think was possible) but they thought the study itself was a solid piece of work and they were looking forward to more. :)

  11. Bob
    Apr 05 - 5:19 am

    Cort said: “…a Japanese study did find evidence of widespread neuroinflammation in ME/CFS. I’ll get to that later.”

    FYI, here is a press release re the Japanese study on neuroinflammation

    Thanks for the article, Cort, as always. Very informative and helpful.

  12. John
    Apr 06 - 9:29 am

    Do you know if the CFI is doing symptom cluster analysis? From what I’ve seen it’s the sudden onset, ‘classical ME’ group that has a) sudden onset, b) swollen lymph nodes, c) sore throat, d) not just neurocognitive symptoms but really more weird, ‘bizarre’ (for lack of a better word) neurocog symptoms, etc. This compared to me who had gradual onset, no swollen lymph nodes, no sore throat, progressive disease course, etc.

    I’m starting to think that sudden and gradual onsets shouldn’t even be allowed into the same studies, or if they are, should be kept separate in the analyses.

  13. Sarah R.
    Apr 07 - 10:07 am

    Well no one could think to ask every question the hordes of us have, Cort. :-)

  14. Carol Steinbacher
    Apr 08 - 11:17 pm

    Cort –
    I am a fairly new reader of your wonderfully informative blog. Seeing this quoted statement, “crimson crescents on their throats”, somewhere in the above report caught my eye as this was just something noted in my newest exam this week. Does anyone have any more information on this? Or, After 18 years is it just another little something…..

    Thanks for any thoughts on this, Carol

    Read more: Report From San Fran III: Taking the Initiative – the Chronic Fatigue Initiative Reports

    • Cort Johnson
      Apr 09 - 11:11 am

      That was something as I remember was reported regularly by Dr. Cheney years ago. I’m not sure if other doctors look for it. Cheney also finds problems with Rhomberg test – which other doctors don’t do either. I can’t remember what the crimson crescents mean, though :)

  15. Carol Steinbacher
    Apr 09 - 4:32 pm

    Thanks for your info, Cort. You never know where it might lead me. :}

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