1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
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Tweeting the Invest in ME Conference: Rituximab, Biomarkers, Progress....What We Learned

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jun 2, 2012.

  1. natasa778

    natasa778 Senior Member

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    Autoimmune pathology may well be triggered by a virus, so the two are NOT mutually exclusive
    jace likes this.
  2. SOC

    SOC Moderator and Senior Member

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    My daughter and I both began our ME/CFS journeys with the same very sudden onset viral illness within a week of each other. It's hard for me to imagine that there isn't a viral component for us, at least. Plenty of other PWME had similar onsets. An autoimmune pathology triggered by a virus (or other immune insult) makes a lot of sense.
    jace likes this.
  3. justy

    justy Senior Member

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    Hi Natasa - yes of course that is a current theory and may well be the case - my brain isnt thinking too well at the moment!
    All the best, Justy.
  4. Mark

    Mark Acting CEO

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    If I have this right, that would be the one where the subtypes of ME/CFS he previously identified with some kind of symptom cluster analysis (I missed the detail of how those subtypes were identified) were surprisingly confirmed by 4 quite distinct patterns of spinal fluid proteins (there was a quite extraordinary-looking slide on that, it looked really strong). My impression was that there are some quite exciting publications in the pipeline on this subject.

    I took some fairly detailed notes on the conference so I'm hoping to find time to write something up in the next week or two.
    Anne and jace like this.
  5. jace

    jace Off the fence

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    Nice one, Mark. I look forward to that.

    Re the viral insult activatiing a pathogen, my ME started with the 'flu, and thiis year my daughter's started with both her small boys having chickenpox.
  6. Enid

    Enid Senior Member

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    Just can't help thinking what clobbers the immune system in the first place since an ordinary sore throat which normally passes lead to my own deterioration in health (and appearance of many latent viruses) in the first place. Polio to Chicken Pox appeared. (Let alone my Neurologist seeking MS and Parkinsons).
  7. SOC

    SOC Moderator and Senior Member

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    Thanks for taking the time to write up something from the conference. I'll be looking forward to it.
  8. Cort

    Cort Phoenix Rising Founder

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    I know where you're coming from Akrasia - and I do agree that the medical establishment has turned its back on us. (I think I've done as much or more than anybody to point out that fact - perhaps you missed the "Still the Yuppie Flu After 20 years article http://phoenixrising.me/archives/10548 ?)

    Technology is improving rapidly though. I just talked to Vinnie Lombardi at the WPI who said that just in the space of two years the ability to detect pathogens has increased significantly.Dr. Peterson said nobody can really be clear about their pathogen status until they are tested using arrays like Lipkin has. Determining whether herpesvirus reactivation is present has been thwarted to some degree by poor diagnostic tests. The data mining capabilities that are allowing Broderick to demonstrate aberrant functioning in immune networks was just developed in the last five years or so.

    So while I agree that the NIH has backed away from this illness because of its complexity (and because of the horrible funding structure for us there) I also think that technologiy is getting better and better at revealing what is going on with ME/CFS and that development may be crucial.
    SOC likes this.
  9. MishMash

    MishMash *****

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    Drumroll, please,...and the future of ME/CFS research will be based on....work done in other chronic diseases. AIDS, MS, lupus, parkinsons, traumatic brain injury, lymphoma, and others. Taken together, their funding is huge. Ours is puny. Folks, grab on to some coattails and hold on, it's going to be a fun ride.
  10. ukxmrv

    ukxmrv Senior Member

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    Can anyone think of a new technology? i.e. what are the new things that have given concrete results that we could not have had 10 years ago?
  11. akrasia

    akrasia Senior Member

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    Cort,

    My point was that we weren't doomed to experience the incomprehension and neglect that followed in the wake of mainstream medicine embracing the psychologizers. Did you see Margaret Williams' compendium of immune dysfunction in the Invest in M.E. newsletter? Did you read the post from Co-Cure describing the genesis of the Rituximab breakthrough, a breakthrough by the way lauded by Fluge and Mella's hospital chief as being the most exciting thing he had witnessed in his career?

    All of this is basic science, observation which leads to hypothesis which leads to experiment. Nothing fancy here.

    We can debate the "ethical" nature of the choices, how conscious or unconscious they were, how determined by institutional dysfunction and inertia, the seductions of vanity and career, and the all too human impulse to cover one's ass. Or we can speculate about darker motives. One thing seems very clear to me: from the point of view of consequences, what has occurred is evil. It has led to death, enormous ongoing suffering, and social disintegration.

    My path through this has been to try to practice, not without considerable frustration and difficulty, an acceptance of the disease, while simultaneously cultivating as much clarity as I can about the social and political contexts in which it has occurred. Without this interrogation the acceptance dimension, for me, feels hollow.

    I don't expect Andreas Kogelnik to be our standard bearer; his job is to build bridges to the broad mainstream biomedical science actors, most of whom have been absent from the M.E. debate.

    It's our job to frame this properly for each other and the greater world. We are doing the work that journalism and the academy should have done if they had not been embedded in the trance.

    Let's not add amnesia to our burden of cognitive deficits.
    Snow Leopard, Mark, rlc and 2 others like this.
  12. Cort

    Cort Phoenix Rising Founder

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    I agree! I think this disorders will inform each other. Fatigue and cognitive problems are found in these disorders... There is a huge potential for them to learn from each other...:)
  13. Cort

    Cort Phoenix Rising Founder

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    Autoimmune disorders often have an infectious trigger; it could be the pathogen itself or it could be the pathogen somehow deranging the immune response (ie pathogen is resolved but the immune response against the body continues on.)
  14. Cort

    Cort Phoenix Rising Founder

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    I understand your viewpoint RLC. I promise to be careful with what I write. I knew that sentence would be a bit controversial so I took some care in writing it. I hope you're as careful as reading what I wrote as I was in writing it. I didn't say CFS was doomed to limbo until new technologies were developed....I said it may be that the technologies present couldn't have uncovered what was going on... Dr. Kogelnik referenced how important the results from new technologies were drawing researchers into the field.

    In the latest PHANU paper Dr Marshall Gradisnuk wrote that it was possible that the inconsistent immune results over the years may have been due to inadequate testing procedures...and then they showed that a significant immune dysfunction was present. .In another paper they reported miRNA results suggesting that some important parts of the immune response have turned off in CFS.....miRNA's weren't understand to be important regulators until about 10 years and research has boomed in the last five years. That study simply couldn't have been done... The epigenetics research is in a similar phase; only recently have researchers developed the tools to allow them to more easily do broad scans. The CAA's gut microflora study is another example of advances in data processing allowing researchers to characterize the entire gut microflora...that was a pipe dream not to long ago. Gene expression is another technology that has been working out the kinks and is getting its feet on the ground.

    Yes, ME/CFS has horribly neglected but it has much to gain from the improving technologies. Their ability to look at the molecular basis of this disorder has created major opportunities and yes, the resolution of this disorder may very well come from them.
  15. Cort

    Cort Phoenix Rising Founder

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    "My point was that we weren’t doomed to experience the incomprehension and neglect that followed in the wake of mainstream medicine embracing the psychologizers."

    I completely agree with you there :)...(although in retrospect since that's what happened I guess we were kind of 'doomed' to have to cope with that".

    It'll be interesting to read Margaret's huge summary....Reviewers vary on the significance of the immune results...PHANU just did a study in which they explicitly referred to the inconsistent immune results (and then supplied some consistent ones using better testing procedures)...When I've looked at them I've found, except for a couple findings, a real mishmash...The reason I'm pointing this out is that - except for natural killer cells and a few other findings - there isn't this incontrovertible huge arrow pointing at the immune system that the research world is ignoring.

    PHANU and Dr. Klimas have had some strong findings recently...Hopefully (yes :), as technology develops - and PHANU apparently has some cutting edge technology - the findings will become clearer.
  16. floydguy

    floydguy Senior Member

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    So if not the immune system then where is that incontrovertible huge arrow pointing? From what I've seen the inconsistencies mean variations in how the immune system is dysfunctional - not that it's dysfunctional in some and not in others so much. And even if that's the case then those with immune system abnormalities should be separated out into another illness or subgroup as there would appear that there are enough people who have low NKC function and other immune issues.
  17. Mark

    Mark Acting CEO

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    I hope it doesn't cause too much confusion if I strongly agree with both Akrasia and Cort...:)...but I don't think they really disagree...

    I really like Akrasia's post #31 above, I think it's quite right to point out that there is no excuse in the complexity of the pathology, and the need for cutting edge knowledge and techniques to understand it, for the decision to ignore the evidence and treat the disease as a psychological phenomenon. There were always plenty of physicians and researchers who knew otherwise, and said so publicly, and the decision to ignore ME/CFS as a real medical disease quite clearly seems to have been driven by unconscionable financial considerations, with huge and tragic human consequences. No amount of ignorance can excuse those political decisions.

    At the same time, one of the take-home messages from the IiME conference was that the 'state of the art' of scientific investigation into ME/CFS pathology is indeed right at the cutting edge of our understanding of human biology, and it really does seem to me that in order to understand and treat ME/CFS it's going to involve an understanding of the interface between the neurological and the immunological. The word 'autoimmune' still seems to be somewhat misleading, as it carries certain assumptions with it which seem to me to be quite likely false. But more than one researcher speaking at IiME emphasised the extraordinary complexity of the fields which the scientific investigation of ME/CFS pathology is heading into. This investigation of the neuro-immune world may well be just about the final frontier of human biology - especially if we have to bring the emerging investigation of the complex world of the gut into the equation as well (and we probably do have to).

    I was reminded, during the conference, of a book I picked up while studying for the Artificial Intelligence section of my MSc. This was a computer science book, looking at the immune system, and it emphasised that the complexity of the immune system was actually much greater than the complexity of the human brain. We used to assume that the brain was the final frontier in complexity in human biology, but it might help to understand the issues here if we realise that what we are dealing with, in ME/CFS and related 'autoimmune' disorders, appears to be an acquired dysfunction affecting the homeostasis at the level of the neurological and immune systems and the interfaces between them. The exciting and cutting-edge work by the Bond researchers is exploring the details of this dysfunction in ME/CFS patients. But if we can all appreciate how tough a problem it is to try to understand how the human brain works, then that should help to appreciate the complexity involved in understanding how the neurological world interfaces with the immune system which is even more complex...

    So I think Akrasia is right to say that there is no excuse in all this for the psychologising of ME/CFS: that was a crime and I don't think it will ever be forgotten. It will turn out, in the end, that biomarkers always were available, for discrete subsets, using older technology, and that there's no reason that these couldn't have been discovered if the research had been allowed to proceed properly. But at the same time, if an understanding of ME/CFS, and effective treatment strategies, are going to require a understanding of neuro-immunology, then we are only just at the beginning of the age where such an understanding is realistically possible, which is precisely why ME/CFS research ought to be one of the most attractive and exciting fields of study for forward-looking researchers.
  18. August59

    August59 Daughters High School Graduation

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    Did Dr. Baraniuk give a presentation on anything he has been working on?
  19. Mark

    Mark Acting CEO

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    Yes indeed, I think I referred to it in passing somewhere above, it's also described in the conference report on the IiME site; I'm still trying to find time to write up a report on the conference but with CFSAC this week it's going to be a while before I find time to do it, if I ever do...
  20. Cort

    Cort Phoenix Rising Founder

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    Yes, he did. I wasn't there but I was told he talked about his new study. He also presented abstracts on it at the IACFS/ME conference in Ottawa. Hopefully it will be out soon.

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