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Definition of recovery in CFS (Bell & Bell, 2010) (inc follow-up of pediatric cohort)

Discussion in 'Latest ME/CFS Research' started by Dolphin, Aug 12, 2010.

  1. Dolphin

    Dolphin Senior Member

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  2. oceanblue

    oceanblue Senior Member

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    So the patients who rate themselves as recovered are, as a group, significantly more fatigued and less active than healthy controls. Interesting.
  3. Snow Leopard

    Snow Leopard Senior Member

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    It's not that hard to alter the pdf protection to enable copy/paste, but it's much nicer to look at the pdf anyhow...
  4. Hope123

    Hope123 Senior Member

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    Dr. Bell also commented on this in his Newsletter a while back; scroll down for the section about fatigue with and without OI:

    http://www.davidsbell.com/

    I'm not surprised. So many of us want to feel well that ANY improvement is celebrated (as it should be) but improvement does not equal full recovery or even substantial recovery in my eyes. For younger folks, they also don't have the gauge of what it was like to be "normal" compared to us "older" folks who might have been used to long work weeks, exercising regularly, taking care of family, etc. all at once without feeling sick/ tired at all.
  5. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Here is the full article.

  6. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    I have met a few people who consider themselves fully recovered, yet when I ask them if they are able to do everything they could before they got CFS, they invariably say "no", as supported by the results of the above study.
  7. Dolphin

    Dolphin Senior Member

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    I think this would also apply for some treatment studies e.g. on CBT, where authors claimed the people were recovered or "fully recovered". Although often in these cases, the threshold was quite low and they didn't ask the individuals were they recovered.
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I also think when it comes to recovery its hard for us to tell as its been so long since we were 'normal' and a big improvement on our previous condition can seem to feel like we have recovered. And yes from people i have heard who say they have recovered still say they have to be careful. At times when i have had a few months of feeling quite well, i am always hesitant to say im recovered as this illness is so up and down and i can always sense the cfs lingering in the background, if u not what i mean.

    cheers!!
  9. Dolphin

    Dolphin Senior Member

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    If somebody isn't working full-time outside the home, I tend to wonder if they really are recovered. With this illness, symptoms often have to provoked. One can get into a routine of few high intensity activities and not long hours and so not feel that bad. But that's not the same as being recovered.
  10. Esther12

    Esther12 Senior Member

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    That's been my experience too.

    It could be that the CBT/GET crew are able to help alter people's percpetions and understanding of their illness in a way thet allows them to do more - but is also a bit crazy. Maybe an insane level of positive thinking does allow some real recovery? Such an approach would rather invalidate studies based upon self-reported symptoms though. I'm not terribly keen on the idea of embracing madness in order to gain some level of recovery either.
  11. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    I also think it's strange the way these people say they are recovered, almost as if it's a badge of honour. They can't stand back and be objective about their lives. The sad part is they are creating misconceptions about the disease which have directed researchers, public opinion etc away from the truth.

    CBT doesn't have to be part of the picture. I think those that have said they have recovered actually believe it - they have made a dramatic improvement, yet they don't realise that the subliminal issues they are still experiencing are part of the original pathology. Knowing what I do about CFS (and XMRV) I would question every sniffle, every sore joint. However most CFS patients, even if they understood they had a biological illness initially, would not have much background info about XMRV or other possibilities.

    If CFS is caused by an RV, then it never goes away. This is beyond question. It doesn't really go into remission either. It just keeps on spreading (unless replication is suppressed by ARVs). It may be that the opportunistic viruses go into remission. This is something I don't think a lot of people have grasped. XMRV infected people should be on ARVs for the remainder of their lives.
  12. biophile

    biophile Places I'd rather be.

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    Does CBT venture into brainwashing?

    Precisely. To those that assume CFS symptoms are simply "subjective", reports of recovery via subjective questionnaires are probably good enough evidence for the effectiveness of CBT. But the subjective symptoms of CFS influence objective measurements, measurements which we now know are not improving even in the CBT studies that use questionable patient criteria. People who claim to be "recovered" while still substantially impaired have probably been deceived or may be in denial. When does bad science become scientific fraud?

    Brainwashing = forcible indoctrination into a new set of attitudes and beliefs. CBT is "indoctrination into a new set of attitudes and beliefs" while making it a requirement to be eligible for state benefits may qualify as being "forcible".

    In my experience, employing a lot of positive thinking to facilitate recovery can be good for negative thoughts but is a seductive and dangerous illusion for CFS. While I cannot rule out the possibility that CBT has helped some patients "ignore their symptoms" or balance their life in a positive way that is reflected in the subjective questionnaires, there seems to be something very dodgy going on when we look at the methodology of these trials. All this talk about "improvements" and "recoveries" from CBT/GET proponents would be more convincing if there was an actual match of objective measurements and the use of proper CFS criteria which at a bare minimum requires "PEM". They have had roughly 20 years to get this methodology correct, so I have little faith that this will occur and I now wonder if they would be willing to fudge results to save face.
  13. Dolphin

    Dolphin Senior Member

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    Good point

    With the PACE Trial, when they initially applied for the money, they were using actometers (objective measures of how much activity somebody does) at the start and at the end. This can be seen in the PACE Trial Identifier and Peter White has said this in the comments on the PACE Trial Protocol. However somewhere along the way they dropped the actometers at the end: they are just using them at the start as "predictors". So we won't learn if the people are really doing more in total. And this trial is costing 5 million UK pounds of taxpayers' money.
  14. biophile

    biophile Places I'd rather be.

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    Yes, a suspicious move if you ask me, whatever excuse they give. I'm almost certain they dropped it after learning about the actometer results in other CBT studies ie no change. They didn't want to be embarrassed during a large expensive trial and will emphasize the "reported" improvements instead.
  15. Dolphin

    Dolphin Senior Member

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    Yes, those are my thoughts also.
  16. xrayspex

    xrayspex Senior Member

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    I am glad I found this thread again, I glanced at it the other day and then today I bizarrely received this article out of his attempt at thoughtfulness in the mail from my pc doctor:

    Family Practice news (mag)Volume 40, Issue 13, Pages 52-53 (August 2010)
    Fibromyalgia: Tailored Tx Proved Successful
    BRUCE JANCIN
    ROME — A tailored combination of cognitive-behavioral therapy and physical exercise training has achieved the largest treatment benefit ever reported for fibromyalgia in a randomized, placebo-controlled clinical trial.
    --------
    I can't find online for free the whole article but this link is by same author and related to same info, basically they split fibromyalgia paitents into 2 groups (some Dutch researcher) as "pain avoidant" and "pain persistent" but they find that both patients, altho w/different psyches, end up both having too much pain and exercise problems so they do CBT group and aerobic exercise and get them thinking more positively and both groups rate their pain and mood as better at the end of the course. NEEdless to say I was rattled bigtime getting this article with his note saying he thought I might find it interesting (ugh interesting is not the word)

    Sheeeit, well either fibromyalgia people are a different beast than CFS or that dx in my chart needs to go. And I just found out thru a dif doc that I got back my VIP results and I am xmrv+, I did call the other doc to tell him about the RV test results and then I got this article a couple days later, hopefully it was already in the mail before i told him about xmrv+ otherwise this seems like a very bad sign about where he is coming from. i have both CFS and Fm dx over the years but I really don't relate to the FM as don't have the tender points and they don't seem to have the OI problems I do, or whatever it is tht causes me to lie down. I have a neck injury and that is where my pain is and there could be some problem from the CFS or whatever neurologically my pain messages get screwed up and maybe make pain worse in neck than it normally would have been, I dont know if that is FM or CFS. But I think a lot of the docs in mainstream see CFS and FM under the same umbrella, and in some ways it is and some not, it seems to me a lot of FM people can aerobically exercise, I get PEM, and if you tried to put me in that study he sent me I would refuse because I have learned not to push it, but then I guess they would just say I am super neurotic and fearful to not even try......argh, I can't believe this is coming up at this stage, I had thought he was a good doc that understands CFS. I think maybe he was really trying to help too cus he knows I am searching for answers.....but hell I have more endurance from playing with valtrex than I ever got from trying CBT.......

    any other studies you think I should send him besides the one in this thread from Dr Bell? That is a good one. Part of me doesnt want to get into the debate, you can never really prove you're not crazy to people who don't get it.
  17. Francelle

    Francelle Senior Member

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    Sounds like the Power of Positive Thinking to me - lol!

    Whoever said that M.E./CFS people have false illness beliefs?
  18. xrayspex

    xrayspex Senior Member

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