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UK Research Collaborative Conference in Newcastle: 13th - 14th October

Discussion in 'Upcoming ME/CFS Events' started by charles shepherd, Mar 26, 2015.

  1. alex3619

    alex3619 Senior Member

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    Agreed. It would be nice to continue the debate at another time and in another thread though.
     
  2. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Many thanks and to Russell in particular.

    Now we know what we are talking about. It looks brilliant to me. Neil is superb and he clearly has a big input. It is all about inflammatory and neural pathways and specifically about PEM so all that stuff about Oxford criteria can go in the bin. Presumably they will even correlate findings with the degree of PEM. This is proper science. They have even thought of the confounding problems of what people will be thinking because they are in an experiment - and will control for that be switching around the order of events.

    I think this is a seriously important move forward in the science. The right people are focusing in on the most likely place to find some clues. And the cytokines and things will be measured as well it sounds like. It fits with the point made on both sides of the Atlantic that we should be studying people during PEM and looking at the abnormal response to exercise rather than just looking at PWME at any old time.

    With this and the people connecting to David Brooks repeating the Japanese PET study I think there is the best chance yet of actually pinning down what is going wrong in the ME brain.

    And there is no suggestion that this is money pinched from the ME pot. Edwards and Harrison got this grant through the open application system. There was no special pleading, no internal politics. It would have gone up against applications for MS or Alzheimer's or whatever. ME has actually become a fashionable disease to study I suspect. I would double the £600,000 personally.
     
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  3. Sasha

    Sasha Fine, thank you

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    Reversal of fortune! :balloons::balloons::balloons::balloons::balloons:

    Thanks, Jonathan. I think we'd all been feeling pretty down about this.
     
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  4. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I actually think we have broken through the glass ceiling this week. The scientists who were not in Newcastle were busy getting collaborations going in London - including Harrison from that team and Fluge in two places at once together with the big immunology and neuroimaging guns. There may be another bit of news coming shortly which will take us another step forward on both the IiME and the Holgate agenda but we need to wait a little while.

    The existence of two different forums with apparently different agendas (IiME, CMRC) may on the surface look like a problem but I would see it a bit more like Apple and Microsoft (remember the adverts?). A bit of competition can help. And the important people have a foot in both camps.

    And I rather suspect that nobody said 'biopsychosocial' at either meeting - am I right?
     
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  5. Sasha

    Sasha Fine, thank you

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    That all sounds excellent!

    They could have said it a thousand times and I wouldn't have heard it because everybody sounded as though they had been gagged and thrown into a giant tin bucket, and were shouting from the bottom of it.

    But I don't think I heard it!
     
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  6. Simon

    Simon

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    Never struck me as a problem, more people focussed on good research is always good in my book. Though I guess it does makes it a bit tricky when they meet on the same day!
     
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  7. Sasha

    Sasha Fine, thank you

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    Prof. Holgate announced that next year's CMRC meeting will be Oct 12/13 in Southampton so I hope everyone has that in their diaries and that next year the dates won't clash! :)
     
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  8. Large Donner

    Large Donner Senior Member

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    The Oxford criteria does not require PEM so it would be impossible for it to be about PEM if it was used.
     
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  9. lansbergen

    lansbergen Senior Member

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    I
    I like his approach.
     
  10. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    That was my point!
     
  11. Large Donner

    Large Donner Senior Member

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    So are you saying he is not using any published criteria at all?
     
  12. Simon

    Simon

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    Some highlights:

    So it looks like the mecfs project is part of a bigger whole (on functional syndromes); not sure if the £600k is for the whole thing, or just the mecfs element, but at 20 controls/20 subjects x 2 tests, £600k seems too much for the ME/CFS project alone.
    See this from Jonathan Edwards at last year's CMRC conf
    Harrison is a Wellcome Trust Fellow (which is pretty impressive) bio: BSMS :: Dr Neil Harrison,more on his specific work on this page

    The aim is to see if PEM in ME/CFS is a form of sickness repsonse
    He quotes Neil Harrison's work on sickness repsonse, using typhoid vaccine which triggers a stereotypical immune sickness response, and the key area affected in the brain is the insula
    Just to be clear, we are talking about normal, 'healthy' responses in healthy people above, no patients involved in that work.

    In this study they plan to look at the brain - focusing on the insula - comparing mefcs patients before/after an exercise challenge too see if during PEM they look like people experiencing sickness response as a reaction to a typhoid vaccine ie an immune-driven response. They are taking blood samples so they can measure immune changes alongside changes in the brain.

    They are also using a cognitive challenge - the stroop test (quick eg) to measure response to a demanding cognitive test too.

    Does look like a very interesting and powerful study, despite Mark Edwards having some views that concern me.
     
    Last edited: Oct 15, 2015
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  13. Valentijn

    Valentijn Senior Member

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    You seem to think that having the study focus on PEM will prevent them from using Oxford. But I think you are grossly underestimating the ridiculous and inappropriate things which psychosomatic researchers will do :p

    In any event, the other Edwards isn't an ME specialist, which means he probably has no idea what PEM is. It could end up being interpreted in a dozen different ways.
     
  14. Snow Leopard

    Snow Leopard Hibernating

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    The boundary conditions of a 'mind' are set arbitrarily, but it sure is convenient to examine a whole brain to see whether it has the properties of a 'mind'. But this is always an abstraction. Examination of that mind relies it to be operating dynamically, which means it will be responding to external signals.The concept of mind only makes sense in the context of the scale in which you examine the system, but I don't see this as a drawback. It makes little sense to consider mind as, say, a single neuron, because neurons only function as neurons in a biological system with a large number of other neurons.

    The same philosophical debates are held in physics about emergence during regular thermodynamic phase transitions.
    http://www.pitt.edu/~jdnorton/Goodies/reduction_emergence/red_em.html (with some discussion of biology too)

    I don't see why you are against the concept of emergence.
     
  15. Bob

    Bob Senior Member

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    Edit: Ah, I see this has already been posted. I wasn't being alerted to new posts in this thread, for some reason. Will catch up now.

    Russell has done a transcript of the talk by Dr Mark Edwards and said I could post it here:
    https://docs.google.com/document/d/1f3FsqRgzLiah_mbMi1j7nDoUih5auUf8VJv03kjnsUQ/edit?pli=1

    Russell also points out some info about Dr Neil Harrison (co investigator with Dr Mark Edwards for the proposed study) at the following link in relation to his work involving brain scans. I'm not sure if it describes exactly the same methodology but it seems very similar:
    http://www.sussex.ac.uk/sussexneuroscience/research/recentpublications


    It looks a lot more promising than any of the other stuff we've read. But the exact methodology isn't explained.

    It involves: an exercise challenge; testing for immune activation (blood testing, but they aren't specific about the tests); and fMRI scans.
     
    Last edited: Oct 15, 2015
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  16. Esther12

    Esther12 Senior Member

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    I know very little about neurology, but I don't understand why 'mind' must be much more local than the brain.

    Are you saying something like: Even if neural networks lead to the development of a thought, there needs to be one point in the brain where the thought is either there or not? Or one part of the brain which assesses whether thought are there or not?

    Is there any vaguely easy to follow article on this you could link to?
     
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  17. Large Donner

    Large Donner Senior Member

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    "MECFS" pateints? ME patients? "CFS/ME" patients? "CFS" Pateints? CF patients? PACE study Patients?

    Where are they getting the cohort from, who will they be diagnosed by.


    ....before/after an exercise challenge too see if during PEM they look like people experiencing sickness response......

    Whose defintion of PEM will they use and with the use of what criteria to select the cohort.

    How could they expect to find objective findings in a weak cohort if they used one? What would the outcome tell them about ME if they used a weak criteria?


    Does look like a very interesting and powerful study, despite Mark Edwards having some views that concern me.

    How will the findings be reported if they dont find anything objective if they use a cohort that doesnt relate to my illness?
     
    Last edited by a moderator: Oct 15, 2015
  18. worldbackwards

    worldbackwards Senior Member

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    Wow!
     
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  19. Snow Leopard

    Snow Leopard Hibernating

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    Back to the Mark Edwards & Neil Harrison study. The main problem is that of specificity and I mean that in terms of
    the breadth of illnesses to which the finding is/could be associated with and the many possible underlying causes.

    The suggestion is that activation of parts of the insula, which deal with interoception are associated with fatigue after Interferon alpha treatment as well as acute inflammation due to the Typhoid vaccination.

    So at best, they have a non-specific marker for fatigue, that could be due to many different causes. If it scales well with severity of fatigue, then we might have something that proves our fatigue to say, insurance companies and the welfare office. But we aren't much closer to understanding the cause.

    If they are going to investigate this, then I would also like to see if the same finding occurs in healthy people who have exercised to excess (eg right after running a marathon).

    Mark Edwards hypothesis is that if there is continued activation of this part of the brain in the absence of known peripheral makers of inflammation, then the conclusion is that the brain must be activated in the absence of such. This leads to his existing theories about top-down regulation errors, or perhaps feedback loops localised that part of the interoception system (similar to these sorts of theories about chronic-pain). Thus such a finding could cause additional resistance against researching peripheral causes and treatments, in favor of brain focused treatments. Cognitive therapy, but also psychoactive drugs. The problem for us that so many psychoactive drugs have already been tested (and in genuine efforts - by researchers such as Natelson) and failed to provide evidence of efficacy.

    All of this is speculative - because I expect, like all the brain imaging studies we've already seen: although 'statistically significant' associations may be found, these associations will lack both sensitivity and specificity for this disease.
     
    Last edited: Oct 15, 2015
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  20. Large Donner

    Large Donner Senior Member

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    Patient 1

    "Hi, do you feel tired after exercise"

    "Yes"

    "Ok you are in the study go through that door"

    Patient 2
    "Hi, do you feel tired after exercise"

    Tired? I am absolutely bed ridden, in pain and I lose my balance and co ordination and I get severe migraines"

    "Oh thats sounds like you have something relating to an undiagnosed neurological condition. This study is about people with functional neurological disorders you could skew the interpretations if you had something like MS or a non MUS. You will not be able to participate in this study.

    "Oh, what shall I do now, what tests should I have."

    !Dont know mate, goodbye!"
     
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