5 ms·

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 me

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.
  - cpncrunch 12y ago
    It's a similar situation with depression -- there are treatments available (such as CBT), but they aren't effective for everyone. I think the problem with CBT for CFS is that it has an incorrect etiology, and more effective psychological treatments will likely become available. From what I can see, CFS definitely can be cured by "some sort of emotional technique". It's just that a lot of CFS patients simply don't want to believe it, so they essentially end up doing the exact opposite of what is required to recover, resulting in further illness rather than recovery.
    - blennon 12y ago
      > From what I can see, CFS definitely can be cured by "some sort of emotional technique". It's just that a lot of CFS patients simply don't want to believe it, so they essentially end up doing the exact opposite of what is required to recover, resulting in further illness rather than recovery. How much of this is due to your personal experience vs survey of the data? "Cure" is a very powerful word. There are several examples of CBT providing beneficial results, but nowhere near complete cures as far as I know. It's important to separate our personal experience from the data about a disease with possibly heterogeneous patient population. For the record, I have no doubt psychological state has an effect on ME/CFS symptom severity.
      - cpncrunch 12y ago
        My comment was based on research into the illness, and understanding the underlying etiology (see my peerj post). Also, I have seen many people cured completely from CFS (most of whom didn't use CBT). Unfortunately there is no effective, evidence-based treatment that is based on a sound etiology of the illness. However if you understand the etiology you can certainly "hack" your brain to fully recover from CFS like myself and many other patients have done.
    - lukestevens 12y ago
      You're making sweeping generalisations about a broad patient population that ends in victim-blaming, which isn't helpful. If there is a subset of chronic fatigue patients that are helped by your method, great. But you don't seem to accept that some CFS/ME patients have tried and have not responded to those sorts of techniques. They did believe it. It didn't work. They need proper medical treatment, in the same way (say) MS patients do, not blame for "simply not wanting to believe it". Please try and accept that there's more nuance to the situation, rather than painting everyone with the same brush.
DanBC 12y ago
Mental illness is a set of real debilitating illness where "emotional woo" is often used. But, if you want something more real, how about cancer pain? Many people experiencing cancer pain experience relief from that pain with the help of the treatment you ignorantly dismiss as "self help emotional woo".
- lukestevens 12y ago
  I think the situation is more akin to stomach ulcers, which everyone _knew_ were caused by stress, until of course a physiological cause was found.
  - cpncrunch 12y ago
    Your line of thinking is interesting. If you actually look at the research, you'll see that stress is still a factor in gastric ulcers (see for example http://www.ncbi.nlm.nih.gov/pubmed/25111233 http://www.ncbi.nlm.nih.gov/pubmed/25111233 and http://www.ncbi.nlm.nih.gov/pubmed/16581366 http://www.ncbi.nlm.nih.gov/pubmed/16581366). Just because H.Pylori can cause ulcers doesn't mean there can't be other causes. Given that psychological stress increases stomach acid, it's plausible that stress can cause ulcers. A lot of CFS patients bring up the subject of stomach ulcers. It's almost as if they want to prove that psychosomatic illness doesn't exist.
  - dragonwriter 12y ago
    > I think the situation is more akin to stomach ulcers, which everyone _knew_ were caused by stress, until of course a physiological cause was found. Everyone knew that there were multiple contributing risk factors, including physiological, behavioral, and stress-related, for gastric ulcers before H. Pylori's contribution was discovered. And all those other factors are still relevant after H. Pylori, too, its just one added factor that wasn't known previously.
cpncrunch 12y ago
The study itself says its primary end-point was negative. For a discussion, see http://www.sciencebasedmedicine.org/rituximab-for-chronic-fatigue-syndrome-jumping-the-g/ http://www.sciencebasedmedicine.org/rituximab-for-chronic-fa...

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.
- cpncrunch 12y ago
  It's a similar situation with depression -- there are treatments available (such as CBT), but they aren't effective for everyone. I think the problem with CBT for CFS is that it has an incorrect etiology, and more effective psychological treatments will likely become available. From what I can see, CFS definitely can be cured by "some sort of emotional technique". It's just that a lot of CFS patients simply don't want to believe it, so they essentially end up doing the exact opposite of what is required to recover, resulting in further illness rather than recovery.
  - blennon 12y ago
    > From what I can see, CFS definitely can be cured by "some sort of emotional technique". It's just that a lot of CFS patients simply don't want to believe it, so they essentially end up doing the exact opposite of what is required to recover, resulting in further illness rather than recovery. How much of this is due to your personal experience vs survey of the data? "Cure" is a very powerful word. There are several examples of CBT providing beneficial results, but nowhere near complete cures as far as I know. It's important to separate our personal experience from the data about a disease with possibly heterogeneous patient population. For the record, I have no doubt psychological state has an effect on ME/CFS symptom severity.
    - cpncrunch 12y ago
      My comment was based on research into the illness, and understanding the underlying etiology (see my peerj post). Also, I have seen many people cured completely from CFS (most of whom didn't use CBT). Unfortunately there is no effective, evidence-based treatment that is based on a sound etiology of the illness. However if you understand the etiology you can certainly "hack" your brain to fully recover from CFS like myself and many other patients have done.
  - lukestevens 12y ago
    You're making sweeping generalisations about a broad patient population that ends in victim-blaming, which isn't helpful. If there is a subset of chronic fatigue patients that are helped by your method, great. But you don't seem to accept that some CFS/ME patients have tried and have not responded to those sorts of techniques. They did believe it. It didn't work. They need proper medical treatment, in the same way (say) MS patients do, not blame for "simply not wanting to believe it". Please try and accept that there's more nuance to the situation, rather than painting everyone with the same brush.

DanBC 12y ago

Mental illness is a set of real debilitating illness where "emotional woo" is often used. But, if you want something more real, how about cancer pain? Many people experiencing cancer pain experience relief from that pain with the help of the treatment you ignorantly dismiss as "self help emotional woo".

lukestevens 12y ago
I think the situation is more akin to stomach ulcers, which everyone _knew_ were caused by stress, until of course a physiological cause was found.
- cpncrunch 12y ago
  Your line of thinking is interesting. If you actually look at the research, you'll see that stress is still a factor in gastric ulcers (see for example http://www.ncbi.nlm.nih.gov/pubmed/25111233 http://www.ncbi.nlm.nih.gov/pubmed/25111233 and http://www.ncbi.nlm.nih.gov/pubmed/16581366 http://www.ncbi.nlm.nih.gov/pubmed/16581366). Just because H.Pylori can cause ulcers doesn't mean there can't be other causes. Given that psychological stress increases stomach acid, it's plausible that stress can cause ulcers. A lot of CFS patients bring up the subject of stomach ulcers. It's almost as if they want to prove that psychosomatic illness doesn't exist.
- dragonwriter 12y ago
  > I think the situation is more akin to stomach ulcers, which everyone _knew_ were caused by stress, until of course a physiological cause was found. Everyone knew that there were multiple contributing risk factors, including physiological, behavioral, and stress-related, for gastric ulcers before H. Pylori's contribution was discovered. And all those other factors are still relevant after H. Pylori, too, its just one added factor that wasn't known previously.

cpncrunch 12y ago

The study itself says its primary end-point was negative. For a discussion, see http://www.sciencebasedmedicine.org/rituximab-for-chronic-fatigue-syndrome-jumping-the-g/ http://www.sciencebasedmedicine.org/rituximab-for-chronic-fa...