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New paper: Inability of ME patients to reproduce VO2 max indicates functional impairment

Discussion in 'Latest ME/CFS Research' started by Countrygirl, Apr 23, 2014.

  1. Marco

    Marco Old blackguard

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    I appreciate its not the 2 day CPET but here's a few links on GWI :

    The Baraniuk brain study which should be familiar (not the paper)

    http://www.medicalnewstoday.com/articles/262010.php

    Autonomic dysfunction supports self reported post exertional 'fatigue' in GWI

    http://journal.frontiersin.org/Journal/10.3389/fnins.2013.00269/full

    Its difficult to pick out one specific paper for post concussion syndrome. One recent development is the use of early exercise to prevent acute concussion developing into post concussion syndrome which sounds like GET but the key to the approach in PCS is that its individually tailored with the primary intention of avoiding (not ignoring) aggravating symptoms.

    This is a general overview of post concussion syndrome but touches on symptoms following exertion (bottom of page 7 - can't copy and paste from this document). On a more general note there are many similarities between this syndrome and ME/CFS not least that when you fail to recover 'as expected' then predisposing usually 'personality' factors start entering the discussion.

    Postconcussion Syndrome: A Physiatrist’s :)Approach

    http://now.aapmr.org/PMRJournals/201110_S396_PostconsussionSyndromeAPhysiatrists.pdf
    Dolphin likes this.
  2. SOC

    SOC Moderator and Senior Member

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    I have seen no indication that PEM is a feature of either Sjogren's or Lupus. Fatigue, yes. Exercise intolerance, maybe. PEM is neither of those.

    Nevertheless, it would be advantageous to all patients of fatiguing illnesses to do research using 2-day CPET to determine whether the decline after exercise is present.
    MeSci, Valentijn and peggy-sue like this.
  3. peggy-sue

    peggy-sue

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    I agree absolutely, @SOC that all "fatigue" related illnesses should be studied using the 2 day test - to be absolutely sure that is is or isn't specific to ME. :thumbsup:
    rosie26, MeSci, SOC and 1 other person like this.
  4. PennyIA

    PennyIA Senior Member

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    Well, to be honest? They probably quit complaining about the pain and started to lie about it to avoid future electric shock treatments... at least, that's what I would have done.
    peggy-sue likes this.
  5. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    As concussion can be associated with damage to the blood-brain barrier and notably to the pituitary gland, the symptoms and signs would appear likely to resemble ME. Indeed, maybe head trauma (even mild) could be a cause of ME in some people. There has been a little discussion of this in other threads.
  6. SOC

    SOC Moderator and Senior Member

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    Maybe that will happen someday, but I doubt it. Unless there's clinical evidence of post-exercise exacerbation of symptoms, there's no motivation for anyone to study it. Exercise intolerance intolerance is a different beast and is already studied in conditions where it exists.
  7. bambi

    bambi

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    This is a very important paper. It is not only about exercise intolerance, but actually points to the cause of exercise intolerance, heart (muscle inflamation), low oxygen - muscle and a loot more. Keep this paper close. Very important piece of the puzzle indeed.
    NK17 and peggy-sue like this.
  8. SOC

    SOC Moderator and Senior Member

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    I know I'm repeating this over and over, but I think it's important that we patients make this distinction. PEM is NOT exercise intolerance.
    This paper is not about an abnormally low VO2max on a single CPET (exercise intolerance). It is about the inability to reproduce VO2max and other measures on the second day CPET. This is the feature that, so far, sets us apart from all other illnesses and is likely, therefore, to be diagnostic.

    Exercise intolerance is an known symptom of a number of different conditions for which graded exercise is often (not always) prescribed. Treatments for exercise intolerance are not necessarily appropriate for PEM.

    We patients need to be careful that we properly characterize this feature of our illness or we will perpetuate a number of damaging misconceptions about our illness.
    Dolphin, Starfive, WillowJ and 7 others like this.
  9. OverTheHills

    OverTheHills

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    What is the current situation with Dr Unger and 2 day CPET? Does this paper give us leverage?
    OTH
    WillowJ and NK17 like this.
  10. NK17

    NK17 Senior Member

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    How many of us reading this thread had the 2 days CEPT?

    I really wanted to do it last summer, but my ME dr. advised me against it and told me to save every penny.

    Now I regret not doing it back then when I was way more "functional". Doing it now would be pure suicide ;(.
  11. Kati

    Kati Patient in training

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    i have maintained that doing one day VO2max test would give an opportunity to the CDC to say I am just deconditioned. i am hoping that after many delays, 2 days will be the protocol. Going to the clinic will set me back 1000$ (and a prolonged relapse) so it's better be worth it.
    Last edited: Apr 27, 2014
    WillowJ, MeSci, Valentijn and 2 others like this.
  12. bambi

    bambi

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    I agree with you that we should differentiate. And I agree with you that they are differences between PEM , PENNE and exercise intolerance and the probable causes and mechanism to each. I don't agree that this study will ONLY useful to aid diagnosis and it does not set us apart from other illnesses. The opposite is true, it will place us with in a range of disease which not previously considered to be relevant to me. You will see - things will fall into place.
    NK17 likes this.
  13. SOC

    SOC Moderator and Senior Member

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    I do not suggest that it will ONLY be useful for diagnosis. This research has value in understanding the nature of the illness and consequently politics as well. It will be important for developing treatments. It is critical for disability evaluations. I'm sure there are many more ways this research will be useful.

    Why do you say this does not set us apart from other illnesses? Do you know of other illnesses that show a decrease in multiple measures on the second day CPET testing?

    What do you mean by "place us with in a range of disease which not previously considered to be relevant to me"? I don't understand this phrase. Do you mean it will show that we belong in a known already established illness group? If so, which one?
    Valentijn and NK17 like this.
  14. Marco

    Marco Old blackguard

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    In the case of post concussion syndrome we at least know unambiguously what the trigger was - an initial 'mild' traumatic brain injury but only a minority then go on to develop the syndrome after the point where the initial injury should have healed and neuroinflammation 'should have' ceased. This suggests to me that there may be an increased tendency to develop sustained neuroinflammation in some individuals and this appears to be the case as regards gene polymorphisms and microglial activation.

    The fact that a constellation of symptoms closely resembling those that lead to a diagnosis of ME/CFS can result in the absence of infection suggests to me that an initial or continuing infection isn't necessary for a 'state' such as ME/CFS to develop.


    (my bolding).


    http://www.molecularneurodegeneration.com/content/4/1/47
    MeSci likes this.
  15. beaker

    beaker CFS/ME 1986

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    I know I have posted this before in some long ago thread on the matter, but I think it bears repeating. Or at least it helps me vent;-)
    This work was done -- perhaps not to the degree of specificity-- but the 2 day tests were done and data collected 25+ years ago by HEM{or whatever incarnation of their company name is now}
    It was done on the Ampligen patients. At least on the early studies. All that data is sitting in some box in storage somewhere. A shame they don't pull it up and analyze it and share it. Shame nothing was done w/ it all those years ago. The focus was on approval via the shortest route, and no one was paying attention. Heck not many are now.
    Where are the WSJ articles ? Where is the NYT ? It's not as sexy as mass hysteria, yuppie flu or XMRV, but it's damned important.
    WillowJ, NK17, Valentijn and 2 others like this.
  16. alex3619

    alex3619 Senior Member

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    @beaker, do you have a reference for 2 day CPET 25 years ago? OR was it just exercise testing? What was measured?
    Dolphin likes this.
  17. beaker

    beaker CFS/ME 1986

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    I have my own test results, that's it. I'd have to dig out the papers to tell you every little thing on it.
    They measure anaerobic threshold, the various gas exchange stuff, it was on treadmill. how long lasted how long to exceed AT, HR, BP that sort of thing. And they did a second day test. Doesn't really sound any different from what I understand these tests to be.
    They also retested half way mark of the study and at the end of the study.
    And yes, they had sedentary controls. At least in the very beginning of the study they did. But it wasn't blinded. Physiologist came in and did the initial testing/set it up . Then later the clinic staff took over.

    Maybe the Investigators{Cheney, Peterson} would have some of that. They were using it as a marker for Ampligen efficaciousness. But they sure knew enough to do a 2 day.

    I guess I just get upset at all the wasted time. Half my life, ya know ? Yes. I 'm sure you do.
    WillowJ, rosie26, NK17 and 5 others like this.
  18. alex3619

    alex3619 Senior Member

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    Yes, @beaker , its decades of wasted time for millions of sick people. I am trying to figure out the history and timeline.
    WillowJ, rosie26, beaker and 2 others like this.
  19. Gijs

    Gijs Senior Member

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    Nothing will be done with this test. Nobody in the medical community cares about CVS/ME tests. Maybe about 100 years there will be a breakthrough when we al are dead. Only the PET scan can be a start....
  20. alex3619

    alex3619 Senior Member

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    Nothing was done to treat H pylori induced gastric ulcers either. Doctors largely ignored the finding. They were even stopped from talking about it at medical conferences, as most conferences were funded by companies that produced antacids. This is a matter of public record, its not conspiracy.

    Yet when patients demanded treatment, became active to make it happen, things changed.

    Nothing may happen with CPET only if we let nothing happen. This is hard evidence, not quite as good as it could be but darn close. Its irrefutable when a patient is tested, and any of us who can afford it and are not too sick to prevent it can get tested. People are winning legal challenges based on this.

    Our researchers are now using CPET. Most are aware of it. Its not going away.

    Currently CPET, from my understanding of cost, is about 20% of the cost of a PET scan that can show detailed brain inflammation (the Japanese research). Its also direct evidence of disabling pathophysiology.

    Let me reassert the main point: nothing will happen only if we let nothing happen. We may have to fight for this, but the evidence backs us.
    rosie26, beaker, peggy-sue and 7 others like this.

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