1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
California 2014: IACFS/ME Day Two: Translating Science into Clinical Care: 21 March 2014
Searcher kicks us off on Day Two, with an autoimmunity overview, then we are into immunology and cytokines, we hear from Susan Levine and the allergy-related signatures study done with Lipkin et. al, a talk about paravirus B-19, Mady Hornig from CFI with more research, John Chia who...
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Article: Ottawa IACFS/Conference Reports IV: The Immune System!

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Dec 30, 2011.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. Enid

    Enid Senior Member

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    What a great opening for 2012 Cort - things really picking up now (with Lipkin et al study, Norwegian findings too). Much to be really encouraged about at long last. Now who was it in the UK suggesting researchers would be put off.

    (Strange thing on a personal level - 12 years ago unable to shift a sore throat as usual I did wonder about the immune system)
  3. Cort

    Cort Phoenix Rising Founder

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    Thanks Enid. The UK govt is also now funding some biological research into ME/CFS :)Retro confused:). Isn't that something????

    It was great to see PHANU show up so big at the conference. :)
  4. Firestormm

    Firestormm Content Team Lead

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    Cort that quote at the end. Who said it? Someone from Kings?

    Thanks
  5. Enid

    Enid Senior Member

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    It's been "The Big Sleep" here.....:In bed:....and that's not just me.
  6. floydguy

    floydguy Senior Member

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    Thanks. As you know, I always enjoy a good write up on immune system issues. I will be seeing Dr. Klimas soon and hope she will be able to fill in some of the blanks as I have been in some of the studies you mentioned. Last visit she commented that I fit better into the GWI model than the ME one. It will be interesting to see if she will expand on this.

    Direction is clearly more positive but still nothing close to a major break through.

    I am glad to see Montoya try to shake up the research community a bit. Clearly improvement needs to be made in the research world to make more progress. I hope the CDC is listening so they can either shape up or get out of the way.

    As I've said before, I'd like to see at least a handful of subjects in each study where extensive testing has been done so that comparisons can be made across studies. Even CCC criteria is way too vague and broad to be able to make good comparisons and even inclusions. At one of these collaborative sessions couldn't we lock these guys in a room until they come up with 10 (or whatever) objective tests that research subjects must have been tested for in order to be in the study?

    I'd also like to see some kind of environmental "stress" (ie mold/toxin exposure) added to the list of potential "stressors".
  7. Ember

    Ember Senior Member

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    This is such a strange paragraph! The bad CFS name that you continue to use, Cort, signifies the bad CFS definitions that you seem to decry. (Researchers probably don't feel that they can make progress in what they feel is a 'wastebasket disorder.') ME is a CFS subset that should be used in research. When Dr. Montoya admonishes the research community to pull itself up by its bootstraps and create consistent sampling and study design protocols, does his admonishion have nothing to do with all the talk about the bad name?

    In reporting Dr. Montoya's challenge that the field commit itself to developing rigorous standards - a kind of Gold Seal Approach, you ask, Should it happen? Yes.Will it happen? Dont hold your breath. The IACFS/ME is the logical choice to do this but theres no evidence of a push there to do that.

    Your stance confuses me, Cort. Which side are you on?
  8. Cort

    Cort Phoenix Rising Founder

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    Yes, sorry about that. That was Basnall et al - just added them in.
  9. Cort

    Cort Phoenix Rising Founder

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    Interesting that you fit the GWI model better. I wonder what percentage of patients do??? A fascinating question really - I imagine that its a good percentage - maybe people who had some similar sort of environmental exposure.

    After living in a house with mold issues I agree!

    The reaction from the cytotoxic T-cell malfunction study (when it is published) will be interesting. You never know how the research community will respond. I expected them to jump all over the Pacific Fatigue Lab VO2 max study and that didn't happen (although it has attracted quite a few CFS researchers to look at that). I guess we'll find out.

    First we need the study published. I well remember that haunting cancer cluster study at the Reno conference - which was never published. I think PHANU will get the T-cell study out, however.
  10. floydguy

    floydguy Senior Member

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    Can you expand on this? Why exactly would researchers climb over Pacific's VO2 max results? Not sure I follow you here.
  11. Cort

    Cort Phoenix Rising Founder

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    Another strange paragraph :D

    My belief is that that its the messiness of the definitions that is the major problem in the research arena - not the name. This leads to difficulty replicating results which leads researchers to think there's nothing there 'there'.

    This is not to say that the name is not a problem but I think its the fluctuating research results - the cytokine studies, for instance, that are all over the map - that is the main stumbling block for researchers. Both need to be addressed but if I could choose one to get worked out - I would choose to have Montoya create his study design protocols and have them be used. I think that would lead to more positive results which would further legitimize ME/CFS - and hopefully identify subsets - leading to more positive results, etc. :)

    This is not to take away from the problems that the name causes and has caused but I think definitions and study results are more of a problem in the research world .

    Check "A real disease after all" for recent gene evidence suggesting that there are underlying gene defects that contribute to CFS; ie it is one big disorder after all.

    http://forums.phoenixrising.me/content.php?522-%E2%80%9CAll-in-the-Family%E2%80%9D-A-Real-Disorder-After-All-%E2%80%93-the-Albright-CFS-Heredity-Study
  12. Cort

    Cort Phoenix Rising Founder

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    They suggested that a significant portion of people with ME/CFs have a metabolic abnormality distinct in the world of medicine; ie their inability to maintain VO2 max results in exercise challenges a day apart. Staci Stevens said heart failure, kidney failure, etc. patients can all duplicate their VO2 max results - but people with ME/CFs cannot.
  13. Ember

    Ember Senior Member

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    But the name isn't separate from the definition. Which cohort would you have researchers use in current study designs, a CFS cohort, an ME/CFS cohort or an ME cohort? As you know, ME/CFS is the CCC-defined cohort; ME is the ICC-defined cohort. Both are subsets of CFS, a wastebasket disorder by any definition.
  14. floydguy

    floydguy Senior Member

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    That certainly is an interesting difference if true. As someone, who doesn't appear to get PEM but still has a low VO2 max I wonder if that holds true for me. But as I stated earlier I may be closer to GWI or "player" to be named later :)
  15. Ember

    Ember Senior Member

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    Responding to your edit,Cort, I don't see how the recent gene evidence you describe suggests that it is one big disorder after all. Instead, the results strongly support a genetic predisposition to CFS as it is currently defined and diagnosed by clinicians in Utah.

    If Dr. Bateman, one of our best diagnosticians, had a hand in determining the Utah "CFS" cohort, then bear in mind that she is one of the authors of the ME-ICC.
  16. oceanblue

    oceanblue Senior Member

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    Is there a way to get a printer-friendly version of these articles? I know there is on threads but couldn't see the option here, and this article is too long to read online. Thanks
  17. Anne

    Anne

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    Cort, thanks for another great article! And Happy New Year!

    Could you expand on this a bit (I might have missed something)? What does Montoya (and Vernon) mean by this, what would a Gold Seal Approach encompass?
  18. Hip

    Hip Senior Member

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    Very interesting, Cort, to read in this article that levels of the hormone neuropeptide Y in ME/CFS patients correlates with negative thoughts and emotions such as irritation and anger.

    I notice that I am getting an increase in these undesirable mental states, just over the last year, and wondered what was driving this, and how to fix it. I call this general mental state of negative thoughts, irritation and anger "sourness". Perhaps by reducing neuropeptide Y levels, this "sourness" might disappear.

    I also read just now that, as well its production in the brain, neuropeptide Y is also produced by abdominal fat. Ref: here.

    Well perhaps not co-incidentally, in the last year or so I also seem to have developed an increasing bulging ring of abdominal fat that I never had before. It never occurred to me that this unwelcome addition to my waistline might also be the hormonal source of my sour mental state!!

    The researchers have not shown yet whether this abdominal fat neuropeptide Y can enter the blood stream, but assuming it can, methinks it's time to go on a diet to burn of that burgeoning belly bulge that might well be the basis of these negative emotions!

    The fact that high neuropeptide Y also causes low natural killer function is another reason to try to address this elevated neuropeptide Y problem.
  19. Cort

    Cort Phoenix Rising Founder

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    Gold Seal was my term but my understanding is that the CFS research community would decide on standards for research so that they could accurately compare results across studies. For instance, if a cortisol test was done - it would be done using certain parameters, or if a tilt table test was done it would be done in a certain way (there are multiple ways to do this). Ditto with an exercise test - there are lots of different ways to do exercise tests. Blood storage protocols for lab tests could fall in here. It could presumably include how you get the patients for studies. Are they gender, age, weight and activity level matched? What definition do you use? Did they have acute onset or gradual onset. I imagine if the researchers got together they would say use the Canadian definition or ICC. Should some sort of exercise or stress test be done before the actual study?

    Some of these things would drive up costs but many researchers could and should implement them and if a Gold Seal approach to CFS research was produced I imagine it would help alot with getting more funds from the federal govt ie our grant approval rates would go up.
  20. Cort

    Cort Phoenix Rising Founder

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    I'm doing lots of work to bring down those irritable thoughts - they are every present - and it does help. I feel more relaxed and stronger physically. The abdomen in an interesting place in CFS - there's evidence that blood pooling in that area draws blood from the brain contributing to standing problems in some people and yes, for some reason, the abdomen is just a bad place for fat to be....Good luck with the diet :)

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