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Article: Looking Forward: Dr. Peterson on ME/CFS Research, Treatment Options and Hope for the Future

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Oct 17, 2011.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    ahimsa and Enid like this.
  2. RUkiddingME

    RUkiddingME Senior Member

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    Thanks so much for the information!!! I saw it just after posting my new post about my Natural Killer Cell deficiency. Very informative!
  3. Helene

    Helene

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    Yes, thanks for posting this. I have a question, however. Can anyone tell me if Dr. Klimas' protocol resembles that of Dr. Peterson. She is easier for me to reach.
  4. floydguy

    floydguy Senior Member

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    Definitely some interesting tidbits. As very low NKC activity is a primary symptom I am always going to like whatever is written about that.

    Re: Conspiracies. Not really sure where that comes from. We've had this discussion a zillion times. Conspiracies don't have to mean believing in little green men hanging out in Rachel, NV. One only has to look at the activities of Unum, the CDC, Fauci, Simon Wessley, PACE Trial, etc. to see that not everyone believes in CFS and wants to find a solution.

    Furthermore, the only group possibly behaving worse than some in the CFS patient community are the researchers and MDs. They're behavior is at least as shameful. The SOK was a case in point. I don't think anyone in that room could even agree in which city they were in much less how to proceed forward with CFS.

    As you pointed out, with so little funding available it would be extremely helpful if there was some leadership in the researcher/MD community agreeing on where to best spend money so we don't end up with dozens of interesting "hints" that go no where due to little funding or because another researcher would rather work on their own pet project or theory.

    Perhaps it's a helpful reminder to the patients to play nice. But it would be nice to nudge the MDs and researchers into playing nice as well and making some attempt at agreeing on a way forward rather than the "Balkanization" of research that seems to define CFS research efforts.
  5. Cort

    Cort Phoenix Rising Founder

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    Thanks! Its lovely that we actually have an immune abnormality that shows up time after time - its the real deal! The really big news would be a similar finding in cytotoxic T-cells - which Brenu did report on at the last IACFS/ME. More good news simply involves the growth of technology and what it has been and will be uncovering around ME/CFS.

    Corinne talked about how excited Dr. Peterson is about Simmaron Research in her accompanying blog on Driving Miss Daisy. I have the feeling that a frustrated researcher has been unleashed. Working with Chimerix, CFI, Bond University in Australia, the CAA Dr. Peterson is clearly in demand. I hope Simmaron Research is a big success and it may very well be.
  6. Helene

    Helene

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    Floydguy, you are dead right!! The Balkanization is there in the research and in the treatment protocols. Patients find themselves running all over the place. Patients have to pay for this, and pay dearly, losing the best years of their lives.
  7. Cort

    Cort Phoenix Rising Founder

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    That is a really interesting question.....I really don't know. I know that both look very closely at NK cell tests and cytokines. I know both use sophisticated exercise tests in their labs. I know that both are interested in orthostatic intolerance - they are both up on all the major areas of CFS research.....

    but do they use the same treatments? Both do use immune modulators of all sorts in SOME patients. Both use therapies to increase blood volume (look at Corrines blogs - See Driving Miss Daisy - on the Front page for all the things she is doing with Dr. Peterson. I imagine their protocols are quite similar; the only thing I wonder about is pathogens and antivirals. I know Dr. Klimas uses them but I think Dr. Peterson has been focused on this area for a long time and he is the one Chimerix came to test out their herpesvirus drug. That is just a guess though. My guess is that Klimas has more of an emphasis on using the VO2 max to build exercise regimens that enhance fitness and she is more tuned into stress reduction stuff.

    Both are creative practitioners who keep up on the latest treatments. I think either would be really good.

    Watching Lapp, Klimas, Bateman and others debate how to handle really hard or confusing cases of CFS at the IACFS/ME conference was pretty enlightening; these guys are all smart and creative practitioners.
    fla likes this.
  8. Cort

    Cort Phoenix Rising Founder

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    :cool::cool::cool:

    You bring up such a key problem in CFS; too many starting points and too little money results in people being spread all over the place which means very slow progress anywhere! I think that's just the way its going to have to be for awhile. It is good to see that the emphasis on NK cells appears to be turning out and is gathering steam. Of course the big problem is low research funding - which means that only a few reserachers are available to work on any one topic.
  9. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Very interesting and informative.

    It appears to me that a very few patients may be too aggressive on some of the science re HGRVs (although i can't really evaluate the science, so i can't say for sure). Is this all that he is referring to?

    Or is he saying there is no cabal at all out there trying to undermine legit ME findings? Because this certainly the case when it comes to CDC, some at NIH, and the whole Wessely school. Please clarify?

    Also who is the grant judge who has declared he will never give Judy a grant? Why are you ignoring this topic you brought up to disparage Judy, now that the emphasis has turned to who is this unethical scientist who is potentially sabotaging Judy's science?? You brought it up; answer, pls.
    currer likes this.
  10. Marco

    Marco Old blackguard

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    I sometimes fear that the 'state' of ME/CFS is analogous to logging all calls to the AA (the UK Automobile Association that provides a breakdown recovery service) involving cars not starting and grouping them all under 'failure to start syndrome'. Subsequently they are found to be due to no petrol; a wiring fault; faulty starter motor etc with no consistent findings and no association at all between the various faults. Alternatively it may be that there is one underlying systemic pathology that produces similar (but not always identical) symptoms regardless of the pattern of onset or eventual cause. I'm more confortable with the latter scenario.

    Given the various onsets and the range of symptoms, one potential systemic avenue that I'm surprised hasn't been explored much to date is that of a sensory gating defect :

    http://en.wikipedia.org/wiki/Sensory_gating

    This is a fairly easy thing to test using a paired response paradigm to determine the degree to which the nervous system is able to habituate 'harmless' stimuli.

    I'm aware that, in the past, Dr Goldstein has suggested sensory gating as the mechanism underlying ME/CFS but as far as I'm aware he hasn't published any experimental evidence to support this. I've only been able to find one dissertation that found a weak association between ME/CFS in adolescents and a sensory gating defect using an auditory stimulus :

    http://docs.google.com/viewer?a=v&q...2-zqfV&sig=AHIEtbT6RtKcAUL1HEGgQFagTGz8pGlTkQ


    On the other hand, there is a reasonably consistent literature around the role of a sensory gating deficit in Fibromyalgia. This study is interesting in that they found a significant difference between Fibro patients and controls using a painless somatic stimulus but not an auditory one :

    http://docs.google.com/viewer?a=v&q...pE9pAE&sig=AHIEtbTvzqW_RVjFyK2BPmjQzQPZPk9frw


    Of course, even if a sensory gating deficit is found in ME/CFS, the same question arises as it does in Fibromyalgia does the gating problem cause the condition or does it result from years of chronic illness?

    Interesingly, Substance P (the pain related neurotransmitter/neuromodulator), which is sometimes found to be raised in ME/CFS which might be expected if pain signals are not properly attenuated, downregulates NK cell toxicity which of course might open up a route for opportunistic infections.

    Additionally, it appears that norepinephrine provides the inhibitory signal that attenuates and thus habituates sensory input and if I recall correctly, Broderick's systems approach found that the adrenergic arm of the HPA axis is 'disassociated' in ME/CFS patients.

    I'd be interested if anyone has come across any other similar studies in ME/CFS?
  11. Daffodil

    Daffodil Senior Member

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    i forgot dr. peterson only sees people with NK cell deficiency. maybe thats why i am not getting an appt. i had NK cell function of "2" but in april of 2011, it was "60"!
  12. shmoo

    shmoo

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    Low NK cell activity is also associated with depression

    The problem with low NK cell activity, diagnostically, is that it is also associated with depression.
  13. jenbooks

    jenbooks Guest

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    Cort, your interview with Peterson and the new info is really fantastic. Good work.
  14. Daffodil

    Daffodil Senior Member

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    shmoo...i think its associated with some cancers too....but does it ever go as low as it does in CFS?
  15. bjsmith

    bjsmith

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    Cort, this is an outstanding piece of writing, as well as a great summary of the current CFS/ME research landscape. With so much innovative, promising research taking place, I can't not feel hopeful about our futures. Thank you for providing another great report for all of us.
  16. Tristen

    Tristen Senior Member

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    "Their conclusion of this still very preliminary study was that vaccination may be linked to pathophysiological problems in ME/CFS".

    Been expecting more of this. Also the recent German study of 8000 showed vaccinated people having 5-6 times more neuroimmune disease than non vaccinated. http://www.naturalnews.com/033858_unvaccinated_children_health.html#ixzz1amjHVLAb


    Good job Cort, thank you. Everything Dr Peterson does brings hope. I'm very grateful for his commitment to us.
  17. Bob

    Bob

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    Thank you Cort. Very interesting.

    What I don't understand is, if the immune abnormalities are consistent, then why there is no widely used biomarker yet?

    I'm not sure if I understand Peterson's opinions about ME being primarily an immune system disorder (if I have interpreted that correctly?) - I seem to have more endocrine issues, rather than obvious immune issues. So that makes me think that something else is going on rather than a primary immune disorder - unless my pituitary gland or hypothalamus has some autoimmune thing going on, in which case it would be interesting and helpful to know why they are affected specifically.

    Anyway, it's all thought provoking, thank you.
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I think thats why they are starting to call it a neuro-immune disorder, neuro maybe refering to the hypothalamus etc which controls all our hormone regulations from adrenal hormones to sex hormones etc some of these hormones even regulate blood pressure explaining alot POTS/OI problems. I have been doing alot of reading on hormonal side of things and i think it plays a big part in cfs as well as the immune system.

    cheers!!!
  19. shmoo

    shmoo

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    I don't know whether the levels are comparable. I believe it can be very variable in ME/CFS. The reduced NK function in depression is thought to be one of the reasons it's a risk factor for cancer and probably in ME/CFS too.
  20. anniekim

    anniekim Senior Member

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    Sorry if I am being a bit slow on the uptake, but if Peterson believes no specific pathogen or even any pathogen is the root cause of M.E, then why is the drug CM001 potentially going to be of great benefit to people with m.e? Is it because if immune dysfunction is the root cause of m.e then pathogens like hhv6 can take hold and destroying hhv6 will bring significant clinical improvement to the patient if not a full cure?

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