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Invest in ME London conference 2012

Discussion in 'General ME/CFS News' started by Kate_UK, Oct 12, 2011.

  1. Bob

    Bob

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    I'm not convinced that the separation of ME and CFS is straightforward either.
    Even the ICC has subsets, such as 'atypical ME'.

    And as floydguy highlighted, however closely matched our illnesses are, we all display slightly different symptoms. So do we have the same illness with different symptoms, or different illnesses with very similar symptoms?

    Many of the researchers are now using both Fukuda and CCC. And hopefully they will start using ICC soon as well.
    So it will be possible in those studies to see how the research results match up to patients within each cohort.
    For example, they might discover that certain biomarkers are relevant only to CCC patients, and not Fukuda, or the other way around.

    But if any biomarkers end up actually being used successfully, then the various diagnostic criteria may become less important, because certain biomarkers may be able to separate patients into cohorts, and then each cohort can be treated and researched upon separately.

    Referring back to what floydguy said, they may be able to separate patients with primary endocrine abnormalities from patients primarily with immune abnormalities, hypothetically, if appropriate.

    So the biomarker approach is a completely different and novel approach to cohorts, which could bi-pass the existing diagnostic criteria.

    I think the various diagnostic criteria are still very important, but I'm just exploring potential ways forward.
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    For what its worth, bond uni who did the recent nk study finding nk bright cell dysfunction, they used the fukuda method.

    cheers!
  3. justy

    justy Senior Member

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    Following this discussion with interest - too tired to join in right now!
    Take care, Justy.x
  4. Kate_UK

    Kate_UK Senior Member

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  5. Ember

    Ember Senior Member

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    Does that mean you'd favour their using the criterial subgroups from the “Optional considerations” section of the ICC?
  6. floydguy

    floydguy Senior Member

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    That would be a good start but I think that criteria probably could be improved a bit. There are probably sub-groups within those categories as well. And there should be rather strict tests to be included in each subgroup. Perhaps there should be an other for those don't fit with the hope being that they can either be diagnosed with something else or be placed into other subgroups as testing/research improves.
  7. SOC

    SOC Moderator and Senior Member

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    Do we have any evidence, even anecdotal, that there are patient groups that are neurological but not immune, or immune without energy metabolism problems? I thought we all had all those problems, although perhaps to varying degrees. Have I missed something?
  8. Ember

    Ember Senior Member

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    This is what the ICC says about criterial subgroups:
    The ICC concludes that “individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.” Voices from the Shadows reminds us that the diagnoses under discussion here can have serious consequences for vulnerable patients.
    Enid likes this.
  9. alex3619

    alex3619 Senior Member

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    Let me make a side point about complexity. There are thousands of aberrant proteins involved in CFS and ME that we know of, and thats not counting the misfolded proteins that have been found but not characterized. Hundreds of those appear to be unique to this disorder, though that awaits further testing for confirmation. Many different biochemical pathways are involved in this. For those abnormal proteins that the body makes (and are not due to pathogens) there are many other proteins involved in their regulation. So quite aside from multiple pathogens and comorbid diseases, we have the problem that hundreds and probably thousands of genes are involved in regulating all this. With that many genes, how diverse will we be genetically? How big an impact will that have on symptoms even if we all have the same or similar conditions? Bye, Alex
  10. garcia

    garcia Aristocrat Extraordinaire

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    Brilliant from Carruthers!!! Thanks for posting Ember. I agree with him wholeheartedly, although I do think the ME ICC is too weak and too inclusive and covers a lot more than 10% of the patient population.
    Sing likes this.
  11. Sing

    Sing Senior Member

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    Just my thought too--brilliant, from Carruthers!

    The ICC aims to shut certain doors firmly, and to keep others open as long as needed to do the next phase of research. Then more sorting can be done, etc.
  12. SOC

    SOC Moderator and Senior Member

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    Too inclusive? That's an interesting idea. In what way do you think it should be tightened up? What symptoms or patients do you think ought to be eliminated to select the correct patient population?

    I thought the PENE and neurological criteria more or less eliminated the 90% of patients falsely included in "CFS" by Reeves et al...?
  13. floydguy

    floydguy Senior Member

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    I think it's the degrees we're talking about. My hypothesis is that most of us could be sub-grouped based on severity of symptoms/labs in a particular area. I am not sure we'll ever get to biomarkers if we don't do this.

    For me it's immune. I think the other area that probably separates us is in regards to what viruses are present. In my case it's EBV, HHV-6, Enteroviruses, VZV, with VZV and the Enteroviruses being the most elevated.

    More importantly for those with severe activity problems you don't want me in your studies because I will skew those results as well.

    The contentiousness is that we are generally experiencing something different that might have a common etiology. Some people are more active than others; some have bad allergies (ie mold, food, etc.). We'll keep going round and round if we don't recognize that we are different and should be researched that way.
  14. floydguy

    floydguy Senior Member

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    This can still be done by questionnaire right? PENE can still be just "worsening of symptoms" after activity and neurological criteria can simply be brainfog? At least for research purposes there really should be tests to confirm (not just symptoms), such as the 2 day bike test and brain scans, tilt table etc for neurological signs.

    In general, I would trust that practitioners such as Klimas, Peterson, Cheney would know the difference. However, I don't trust those at the CDC, Kings College, etc. who might muddy the waters with poorly worded questionnaires that could accept the same population that's now used by the CDC and Wessley.
    Enid likes this.
  15. Enid

    Enid Senior Member

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    Quite agree floydguy - Wessley & Co (psyches) have muddied the waters too long to be trustworthy now.
  16. alex3619

    alex3619 Senior Member

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    In reply to floydguy and Enid:

    Psychologizer: Just tick the box that says you feel worse after exercise.
    Patient: There, done. Any more boxes to tick?
    Psychologizer: No, you have done the right thing. We can help you now. You can be enrolled in a clinical trial that will make a big difference.


    ;) Alex - we need objective measures.
    Enid likes this.
  17. Sing

    Sing Senior Member

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    Another thought here is that a lot of us don't experience a full or stable complement of symptoms right off the bat. Instead, we develop them over time, with possible periods of partial recovery in between. I started with a lot of immune symptoms, but by my 40's and later, neurological symptoms were front and center, with endocrine ones next. So, along with "staged onset", I also see "staged development". And, yeah, add to that, we are all different!
    justy, Bob and Enid like this.
  18. alex3619

    alex3619 Senior Member

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    I am aware of some research, not all published, that shows that symptoms are in clusters and symptom clusters can change. I was a patient in this in the early 90s. So if factors change that lead to symptoms changing, it can look like a new stage though its really only a shifting of symptoms - and its hard to tell the difference between this and symptom progression. Bye, Alex
    Sing, Enid and justy like this.
  19. Ember

    Ember Senior Member

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    Dr. Carruthers puts the horse before the cart when he concludes his September presentation: “As Osler also said 'Listen to your patients. They are giving you the diagnosis'. Now we have the technology to confirm this directly for this complex disease- if we use it.”

    The ICC itself concludes:
    It adds:
  20. floydguy

    floydguy Senior Member

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    How about in terms of actual testing? Did your NKC function, TGF Beta1, MSH, VIP, TH2 oriented immune system all improve? Do you think they might not have improved and the other things became additions to the immune problems? I think in my case the neurological may have improved but I don't really know due to lack of consistent testing.

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