5 ms·

Well said. It's also worth noting that psycho-social treatments have been studied extensively (e.g. PACE trial) with poor results. While I'm happy for people h

Well said. It's also worth noting that psycho-social treatments have been studied extensively (e.g. PACE trial) with poor results. While I'm happy for people here who have resolved whatever underlying psychological and/or emotional issues that were causing them problematic fatigue, the experience of many CFS/ME patients suffering post-exertional malaise is generally much more specific in the type of fatigue suffered, and much broader in the range of symptoms experienced. One example of cutting edge CFS/ME treatment research focuses on the use of rituximab, which has been pioneered by Norwegian oncologists who discovered its effectiveness accidentally, and are now pursuing a phase three trial after successful smaller trials. There are a variety of other approaches being explored too (e.g. Pridgen & anti-virals with anti-inflammatories, Montoya at Stanford, and so on). The work on rituximab, and other research (e.g. this POTS research on autoimmunity: http://www.dysautonomiainternational.org/blog/wordpress/new-evidence-of-autoimmunity-in-pots/ http://www.dysautonomiainternational.org/blog/wordpress/new-...) suggests autoimmunity, but much more research needs to be done. A serious disease needs serious research, and serious research requires serious funding. Psycho-social theories do a disservice to those suffering from a very real, very debilitating illness, and the sooner these distractions can be dispensed with, the better.

cpncrunch 12y ago
I think you're making the mistake of saying that psychiatric illnesses are not "real". Regarding the rituximab trial, it's primary end-point was actually negative. It will be interesting to see if the results are replicated.
- lukestevens 12y ago
  Well, "real" insofar as it's shorthand for "not emotion-based". I.e. it can be observed, studied, and treated in an appropriate scientific manner, and not by means of self-help emotional woo. Do you have a source for your comment about the end-point being negative? The last interview I read with the researchers suggested they were still getting results in 2/3rds of patients, they were optimising their dosing schedule, and were fairly upbeat about their prospects for their phase three trial. I'd be interested to read more discussion on their work though.
  - tomhoward 12y ago
    It would absolutely be possible to observe/study/treat in an appropriate scientific manner, treatments that focus on emotions. To dismiss any emotion-based causes/treatments as "woo" is to claim that there is no link between emotional activity and physiological functioning. There's every bit of difference between saying to a CFS patient "it's all in your mind, go and get a haircut to make you feel better", and saying "your emotions - particularly your subconscious ones - play a huge role in your physiology, you can improve your health by improving your emotions using this technique for which there is a solid track record of success." Psycho-social theories do a disservice to those suffering from a very real, very debilitating illness, and the sooner these distractions can be dispensed with, the better. No, it's the refusal to consider such theories and include them in proper research that does the disservice to sufferers. For as long as this continues to be the case, a genuinely effective treatment for CFS will not be found. I should emphasise: I don't argue for a psychology-only approach to treatment, far from it. My improvement is as much a result of physiological treatments as emotion-based ones. My argument is that both are important, and one without the other will not work.
    - lukestevens 12y ago
      > No, it's the refusal to consider such theories and include them in proper research that does the disservice to sufferers. For as long as this continues to be the case, a genuinely effective treatment for CFS will not be found. But they have been considered. And studied. And found wanting. It is not, anecdotes notwithstanding, possible to "improve your health by improving your emotions using this technique for which there is a solid track record of success". There _isn't_ a "solid track record of success. That's the whole point. If there was, we wouldn't be having this conversation, because everyone with CFS would be cured several times over by now. That's why there is a need for real (read: effective) treatment. If I, or any other of the many sufferers out there, could heal ourselves through some emotional technique then we would be _over the moon_. But we (and many others) have read the books; tried the techniques; and are right where we started: wanting real funding for real research for a real disease. Physiological treatment will work alone, just like they have for stomach ulcers, and countless other illnesses that were previously attributed to vague, non-scientific explanations. We just need to do the research.
- lukestevens 12y ago
  I found the reference. I assume you're referring to the primary end-point of their initial study which was "effect on self-reported CFS symptoms three months after intervention"? As has been widely discussed, the effects showed up 6-10+ months after initial intervention (which was a very intriguing finding), and were often not sustained. They've since modified their protocol to include maintenance doses, so the results of their phase three trial will be very interesting, when it's finally complete.
deleted 12y ago
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cpncrunch 12y ago

I think you're making the mistake of saying that psychiatric illnesses are not "real". Regarding the rituximab trial, it's primary end-point was actually negative. It will be interesting to see if the results are replicated.

lukestevens 12y ago
Well, "real" insofar as it's shorthand for "not emotion-based". I.e. it can be observed, studied, and treated in an appropriate scientific manner, and not by means of self-help emotional woo. Do you have a source for your comment about the end-point being negative? The last interview I read with the researchers suggested they were still getting results in 2/3rds of patients, they were optimising their dosing schedule, and were fairly upbeat about their prospects for their phase three trial. I'd be interested to read more discussion on their work though.
- tomhoward 12y ago
  It would absolutely be possible to observe/study/treat in an appropriate scientific manner, treatments that focus on emotions. To dismiss any emotion-based causes/treatments as "woo" is to claim that there is no link between emotional activity and physiological functioning. There's every bit of difference between saying to a CFS patient "it's all in your mind, go and get a haircut to make you feel better", and saying "your emotions - particularly your subconscious ones - play a huge role in your physiology, you can improve your health by improving your emotions using this technique for which there is a solid track record of success." Psycho-social theories do a disservice to those suffering from a very real, very debilitating illness, and the sooner these distractions can be dispensed with, the better. No, it's the refusal to consider such theories and include them in proper research that does the disservice to sufferers. For as long as this continues to be the case, a genuinely effective treatment for CFS will not be found. I should emphasise: I don't argue for a psychology-only approach to treatment, far from it. My improvement is as much a result of physiological treatments as emotion-based ones. My argument is that both are important, and one without the other will not work.
  - lukestevens 12y ago
    > No, it's the refusal to consider such theories and include them in proper research that does the disservice to sufferers. For as long as this continues to be the case, a genuinely effective treatment for CFS will not be found. But they have been considered. And studied. And found wanting. It is not, anecdotes notwithstanding, possible to "improve your health by improving your emotions using this technique for which there is a solid track record of success". There _isn't_ a "solid track record of success. That's the whole point. If there was, we wouldn't be having this conversation, because everyone with CFS would be cured several times over by now. That's why there is a need for real (read: effective) treatment. If I, or any other of the many sufferers out there, could heal ourselves through some emotional technique then we would be _over the moon_. But we (and many others) have read the books; tried the techniques; and are right where we started: wanting real funding for real research for a real disease. Physiological treatment will work alone, just like they have for stomach ulcers, and countless other illnesses that were previously attributed to vague, non-scientific explanations. We just need to do the research.
lukestevens 12y ago
I found the reference. I assume you're referring to the primary end-point of their initial study which was "effect on self-reported CFS symptoms three months after intervention"? As has been widely discussed, the effects showed up 6-10+ months after initial intervention (which was a very intriguing finding), and were often not sustained. They've since modified their protocol to include maintenance doses, so the results of their phase three trial will be very interesting, when it's finally complete.

deleted 12y ago

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