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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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A new hypothesis of chronic fatigue syndrome: Co-conditioning theory.

Discussion in 'Latest ME/CFS Research' started by shrewsbury, Mar 28, 2010.

  1. Mithriel

    Mithriel Senior Member

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    All this about it being hard to change a name, don't you believe it. One day a group of psychiatrists sat down and renamed ME as CFS. They just kept on with that and suddenly it was everywhere.

    This despite the fact there was ALREADY a disease called CFS in the US which was DIFFERENT from theirs.

    I think we have a neuroimmune disease whether we have XMRV or not.

    Mithriel
  2. fingers

    fingers Senior Member

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    I'm logging that as a vote :Retro smile:
  3. Gemini

    Gemini Senior Member

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    You're right about that, cfs since 1998....

    Med Hypotheses was just in the news (Science, March 12, 2010 "Elsevier to Editor: Change Controversial Journal or Resign") because...

    AIDS researchers worldwide are objecting to its publication of Peter Duesberg's (UC Berkeley virologist) article asserting HIV doesn't cause AIDS and there's no AIDS epidemic in South Africa...

    Some are demanding this journal be delisted from MEDLINE...

    It doesn't peer review articles for one thing...

    Gemini
  4. Jerry S

    Jerry S Senior Member

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    Psychiatrists have used this same sleight of hand trick with the name CBT. Cognitive behavioral therapy was developed by Aaron Beck and popularized by David Burns in the US. It is primarily used as a treatment for clinical depression.

    In the UK, psychiatrists have brewed up a different kettle of fish entirely. Yet they still call it CBT.

    Thank you Mithriel for your many thoughtful posts. My poor befuddled brain appreciates your clarity!

    Jerry
  5. biophile

    biophile Places I'd rather be.

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    I'm not convinced Japan has ever really stood out as a country producing lots of high quality research on CFS. I'm not saying they don't do good research, and they probably have their equivalents of Klimas et al, but at least in the last several years watching PubMed much of it is similar to Reeves and Wessely, with perhaps a hint of Japanese neurasthenia. This latest paper may indicate a further drift.

    As for this "co-conditioning" hypothesis, it is hard to judge without the full text, but it doesn't sound all that "new". I'm sure I've come across similar claims, albeit less developed? CFS hypotheses in general tend to take one angle of CFS with possible relevance and then blow lots of hot air into it until it is swollen enough to give the appearance of a full sized "model".
  6. Dolphin

    Dolphin Senior Member

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    An interesting thing about fatigue is that CBT based on GET decreases fatigue but doesn't increase activity levels - they remain low. This was found in a review of 3 Dutch CBT studies (see below). Fred Friedberg found something similar. The Dutch review also found that there wasn't a correlation between changes in activity levels and fatigue i.e. any people who did a bit more didn't necessarily have lower fatigue levels. For most people including most social security/insurance schemes, etc and most people who know that low activity is not so good for you, improved activity levels would be more important. But instead they continue to focus on fatigue.

  7. Dolphin

    Dolphin Senior Member

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    I think part of the problem is the hype of GET and CBT based on GET. If one reads the literature, one is given the impression that these are great treatments, that sometimes lead to recovery (even though the definitions of recovery are rubbish e.g. not scoring in the bottom 15 percentiles in some areas - but the people aren't required to be working at the same time so they might not feel too bad but still be ill). If people read that a treatment works, they will speculate how it works. I think it's important to keep reminding people that the evidence for GET and CBT based on GET is flimsy.
  8. PoetInSF

    PoetInSF Senior Member

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    I don't see how you go from:
    to:
    The study tested the hypothesis that the improvement by CBT was mediated by the increased activity. There is no GET involved in this study as far as I can see, unless you are implying that the subjects in the study actually went through graded physical therapy sessions along with CBT as part of the study.

    The usual objections are that GET studies did not include severely sick patients and a patient group sponsored study that found adverse effect. Neither of which completely negates the value of GET found by these studies. Can they be improved? Certainly. I for one would like to see a more conclusive study. Maybe they can direct more resources once this resource-sucking xmrv debate is settled.

    Resting happily in SF with pleasant fatigue after logging 2x1.5mi up Telegraph Hill..
  9. Gerwyn

    Gerwyn Guest

    you can make stuff about fatigue you cant about objectively measurable activity levels

    there were no objectively recorded benefits for any recorded parameters in the study that should be the conclusion

    has CBT ever shown any bebefit on scientifically measured parameters a resounding no

    Has GET an equally resounding no
  10. Dolphin

    Dolphin Senior Member

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    No, they are supposed to do graded physical activity as part of the intervention.

    Here's a quote from the Prins (2001) paper (one of the papers reviewed):
    Friedberg in his CBT trial (2009) also asked peope to do something similar in terms of physical activity.
  11. PoetInSF

    PoetInSF Senior Member

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    Being asked to do and doing it are two different things. The way I understand it, the study found that the CBT produced improvement and there was no increased physical activities (eventhough the subjects were asked to). I don't think you can conclude from that that GET is ineffective.
  12. PoetInSF

    PoetInSF Senior Member

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    If you take that stance, then CFS does not exist. There is no objectively measurable parameter in CFS.
  13. Mithriel

    Mithriel Senior Member

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    Graded exercise therapy is carrying on with the incremental increase in exercise no matter how bad you feel or how much pain you are in. They do not believe that such pain is related to a disease process, they think it is normal sensations (their word) which we think is pain.

    They insist that there are no detrimental consequences to such exercise despite patient surveys consistently showing almost 50% of patients feel it is useless or made them worse and despite ME being known for decades as a disease where exercise makes patients very sick. One teenager I spoke to on a forum said she was trying to push through the pain but she was losing the ability to walk at all.

    Even most of the clinics have given it up. They now use APT which I think is adaptive pacing therapy where you increase exercise incrementally but you go down a level if you feel bad and only increase if you feel better.

    As Ramsay could have told them, most of the people who get an initial gain find there is a ceiling they cannot get past. This has been known for decades but these people refuse to look at the expertise gained by those doctors on the side of the patients.

    There are no good studies which show GET is effective or even safe. (The Chalder scale has been shown to not indicate when people feel worse so it cannot be detected)

    Mithriel
  14. Dolphin

    Dolphin Senior Member

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    You can't say that they didn't do what they were asked to. They may well have increased the length of their walk but decreased the activity in the rest of their lives - that might not have been consciously decreased the rest of their activity.

    Here's info from the Fred Friedberg study:


    One might not be able to do that but one might be able to conclude that the improvements in fatige levels, self-report physical functioning, etc aren't as impressive as they look as the patients still aren't doing a normal amount of activity across the day.

    As Mithriel suggests, proper GET hasn't really been tested.
  15. Mithriel

    Mithriel Senior Member

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    by Poet in SF
    You have missed the point. All scientific studies should try to be objective. Asking someone if they feel better is very subjective and liable to bias so a study with an objective measurement carries much more weight.

    An objective outcome could be wearing a pedometer then it could be shown that patients take more steps after the intervention than before. Studies done with these never show any benefit.

    Number of people back in full time employment is also objective, but when that was looked at there was no benefit either.

    The UP VO2max experiments had objective parameters. These could not be influenced by patients or experimenters so are very persuasive and more likely to be true.

    It is not difficult to think up objective measures that could be used for outcomes so it leads to the suspicion that they do not want to use them because they will show how useless these interventions actually are.

    Also, there have been lots of things found in CSF patients and ME patients which are different from controls. Many illnesses look at a suite of results before they can be diagnosed. There is just no will to do that with us. MS and migraine are just two disease which are clinically diagnosed.

    Mithriel
  16. biophile

    biophile Places I'd rather be.

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    The 6 minute walk test can be deceptive.

    During a GET program I was asked how much worse I felt immediately after a 6 minute walk and to rate its difficulty. They were not interested in how it made me feel 30min and 24 hours afterwards even when I raised the issue. I am therefore suspicious about how this test is used in research.
  17. Mithriel

    Mithriel Senior Member

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    Thanks for telling us about that, it is useful to hear from people how these treatments are being used in practise.

    Mithriel
  18. Dolphin

    Dolphin Senior Member

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    May I ask was this part of a research trial or in another situation? If you prefer to PM a reply, feel free.
  19. biophile

    biophile Places I'd rather be.

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    Hi TomK.

    It was not a research trial, but an outpatient rehabilitation program at a hospital. It used GET but did not specialise in CFS. A clinical psychologist was available too, but suggested there was no need for psychotherapy, so I was just allocated a physiotherapist.

    The lead doctor felt "very optimistic" about my recovery, probably because most of his patients had serious physical injuries while I had a diagnosis which he believed would respond well to exercise. I eventually pulled out of the program because it was difficult establishing a meaningful baseline and the increased activity was having an impact on the rest of my life.

    As you know, some patients simply cannot tolerate walking for 6 minutes, while many others can walk 6 minutes if they have to, but they pay for it later rather than immediately by the end of the 6th minute. If the PACE trial is using the 6 minute walk test in a similar way to measure the "fitness" and (immediate) "exercise tolerance" of a patient, then I have serious doubts about the usefulness of this test, especially if patients aren't even "deconditioned" in the first place.

    A few physiotherapists I have talked to over the years have this idea that graded activity should be maintained while tolerating as much symptoms as possible, because there is some positive breakthrough point after 4 weeks. Not sure if that is something commonly taught to them about sedentary healthy people or if it just a ploy to increase the adherence of CFS patients?

    All the times over the years I have tried regular exercise, "graded" or otherwise, there has never been any wonderful breakthrough point to justify the hype.
  20. jeffrez

    jeffrez Senior Member

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    I'm starting to consider that the "blame" for the efforts of all these psychologizers, CBTers, GETers, actually does not lie with them, but with the people who know it's really physiological and who aren't doing anything about demonstrating it.

    We know that the cell and mitochondrial energy metabolism is deranged in CFS, and Myhill has a test for that. Why isn't this test more widely available? Why won't they make it available to anyone outside the UK? Why won't anyone outside the UK develop a similar test? That's the problem. If that test were more widely available, it would definitely provide a reasonably reliable marker for CFS.

    Once that were the case, it could then be easily demonstrated that CBT, GET, or any of that cr4p doesn't change the results of the test one bit, and that therefore they are not effective therapies. Maybe even the opposite of effective in GET. Then the psychologizers would have absolutely nothing to say.

    The blame for this predicament is on the people who, for whatever reason - whether a failure of imagination or initiative, or a desire to continue making money off of CFS patients - refuse to standardize a mitochondrial profile test that would not only provide a marker for CFS, but would finally shut up the psychologizers for good. We already have a model for it in the ATP Profile test. There is absolutely no reason why a test like that can't become more widespread and adopted as a standard test for CFS. That would end the entire debate.

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