4 ms·

I live in Canada. I just listened to one of the participants talk about the experience on the radio and I found it just incredible. In her own words, "She coul

I live in Canada. I just listened to one of the participants talk about the experience on the radio and I found it just incredible. In her own words, "She could not feel her body from the neck down. After the long and gruel ordeal procedure, she began to get sensation back. Things like hot and cold water began to be discernible. She no longer needed to hold both railings when walking down stairs in her home, needing a cane to get the mail, etc ..." She said that it gave her her life back. She said that in short time, she began to get bored with doing the regular, tired routine and actually got a part-time job. I mean, all that sounds phenomenal.

cpncrunch 10y ago
It does sound phenomenal, but bear in mind there was no placebo control, so we don't know how much of the effect was due to the placebo effect. Generally the placebo effect will vary depending on the type of intervention. A very novel and invasive intervention like this will have a high placebo effect. Remember Liberation Therapy? Given that psychological treatment alone can reduce the fatigue in MS to below that of healthy controls (van Kessel 2008), it's likely that the placebo effect plays a large role. (The placebo effect will also affect pain, weakness and numbness, as the part of the brain that produces fatigue - the anterior cingulate cortex and insular cortex - also produces those symptoms).
- zxv 10y ago
  Hang on a minute. Placebo effect does not explain regaining sensation, nor regaining ability walking.
  - patall 10y ago
    That's exactly the placebo effect. You think that you get a treatment and your body reacts to that
  - jMyles 10y ago
    For the purposes of clinical trials, are there any conditions that are excluded as possible placebo effects?
    - Retric 10y ago
      Regrowing limbs for an obvious start. Placebo is mostly effective with pain and has minor impacts on other issues.
  - refurb 10y ago
    Sure it can. Sensation is a subjective measure by the patient themselves. If the patient takes a drug then you ask if sensation improves, they could certainly say "it feels like it's improving". And with regards to ability to walk, fatigue is often a major complaint in MS. If the patient takes a drug, "feels better", they may have more energy and do better on a walk test. There are measure where a placebo effect is unlikely, such as blood tests of biomarkers or physical processes that are easily measurable without having to ask the patient (e.g. plaque buildup on arterial walls).
    - King-Aaron 10y ago
      I think you're vastly and grossly underestimating how multiple sclerosis impacts your nervous system if you think that a placebo effect making you "feel better" will give you the ability to walk again. It's actually a little stunning, reading your position on this.
      - refurb 10y ago
        It's not my position, it's the FDA's position. Take a look at some of the FDA's comments on other disabling diseases like Duchenne's muscular dystrophy. An improve in an ability to walk (6 minute walk test, 6MWT) is view with skepticism by clinicians.
- badsock 10y ago
  Also MS in particular is famous for misleading results due to spontaneous partial remission unrelated to the treatment.
  - deleted 10y ago
    [deleted]
- rpedela 10y ago
  Placebo effects don't last 15 years.
  - cpncrunch 10y ago
    They certainly can if the initial illness is psychosomatic. I'm not saying that is the case here, but I've certainly seen people with identical symptoms fully recover from psychological treatments. There does appear to be a certain psychosomatic aspect to MS, given how effective CBT is in treating the fatigue, the fact that it is triggered by stress, and that depression is a major factor in MS (and plaques appear to be correlated to depression rather than to disability).
    - rpedela 10y ago
      I could see that if it was a pill or injection taken periodically over 15 years, but not a single procedure. In general, you have a point but the fact a single procedure has been curative for 15 years suggests with high confidence that there is real effect. Also claiming that MS is largely psychological is, at best, insulting to MS patients.
      - cpncrunch 10y ago
        >I could see that if it was a pill or injection taken periodically over 15 years, but not a single procedure This is a pretty involved, and long, procedure. One of the main factors about psychosomatic fatigue/pain illnesses is that the patient gets stuck in a vicious circle where the stress of the illness itself causes further symptoms. Sometimes all that is required is something that breaks the cycle. >Also claiming that MS is largely psychological is, at best, insulting to MS patients. First of all, I never said that. I pointed out there there are psychological aspects to it, and argued that there may be some patients diagnosed with MS who have a psychosomatic illness. What % that is, we don't know. I would also argue that it is very unhelpful for you to have that attitude, and it is a reflection of the bias against psychiatric illness that is so prevalent in society. It also goes against what we know about how the brain works. It has been pretty conclusively demonstrated by Noakes and others that psychosomatic fatigue is a fundamental part of the human brain, and likely all mammals as well. Saying that psychosomatic symptoms are somehow bad - or imaginary - is fundamentally misrepresenting the science. Unfortunately this is a very common attitude. I saw last week one of the world's top medical researchers say that changes in mitochondrial activity prove that an illness is not psychosomatic. That statement is, of course, demonstrably false, because cortisol (and therefore stress) reduces mitochondrial activity.

cpncrunch 10y ago

It does sound phenomenal, but bear in mind there was no placebo control, so we don't know how much of the effect was due to the placebo effect. Generally the placebo effect will vary depending on the type of intervention. A very novel and invasive intervention like this will have a high placebo effect. Remember Liberation Therapy? Given that psychological treatment alone can reduce the fatigue in MS to below that of healthy controls (van Kessel 2008), it's likely that the placebo effect plays a large role. (The placebo effect will also affect pain, weakness and numbness, as the part of the brain that produces fatigue - the anterior cingulate cortex and insular cortex - also produces those symptoms).

zxv 10y ago
Hang on a minute. Placebo effect does not explain regaining sensation, nor regaining ability walking.
- patall 10y ago
  That's exactly the placebo effect. You think that you get a treatment and your body reacts to that
- jMyles 10y ago
  For the purposes of clinical trials, are there any conditions that are excluded as possible placebo effects?
  - Retric 10y ago
    Regrowing limbs for an obvious start. Placebo is mostly effective with pain and has minor impacts on other issues.
- refurb 10y ago
  Sure it can. Sensation is a subjective measure by the patient themselves. If the patient takes a drug then you ask if sensation improves, they could certainly say "it feels like it's improving". And with regards to ability to walk, fatigue is often a major complaint in MS. If the patient takes a drug, "feels better", they may have more energy and do better on a walk test. There are measure where a placebo effect is unlikely, such as blood tests of biomarkers or physical processes that are easily measurable without having to ask the patient (e.g. plaque buildup on arterial walls).
  - King-Aaron 10y ago
    I think you're vastly and grossly underestimating how multiple sclerosis impacts your nervous system if you think that a placebo effect making you "feel better" will give you the ability to walk again. It's actually a little stunning, reading your position on this.
    - refurb 10y ago
      It's not my position, it's the FDA's position. Take a look at some of the FDA's comments on other disabling diseases like Duchenne's muscular dystrophy. An improve in an ability to walk (6 minute walk test, 6MWT) is view with skepticism by clinicians.
badsock 10y ago
Also MS in particular is famous for misleading results due to spontaneous partial remission unrelated to the treatment.
- deleted 10y ago
  [deleted]
rpedela 10y ago
Placebo effects don't last 15 years.
- cpncrunch 10y ago
  They certainly can if the initial illness is psychosomatic. I'm not saying that is the case here, but I've certainly seen people with identical symptoms fully recover from psychological treatments. There does appear to be a certain psychosomatic aspect to MS, given how effective CBT is in treating the fatigue, the fact that it is triggered by stress, and that depression is a major factor in MS (and plaques appear to be correlated to depression rather than to disability).
  - rpedela 10y ago
    I could see that if it was a pill or injection taken periodically over 15 years, but not a single procedure. In general, you have a point but the fact a single procedure has been curative for 15 years suggests with high confidence that there is real effect. Also claiming that MS is largely psychological is, at best, insulting to MS patients.
    - cpncrunch 10y ago
      >I could see that if it was a pill or injection taken periodically over 15 years, but not a single procedure This is a pretty involved, and long, procedure. One of the main factors about psychosomatic fatigue/pain illnesses is that the patient gets stuck in a vicious circle where the stress of the illness itself causes further symptoms. Sometimes all that is required is something that breaks the cycle. >Also claiming that MS is largely psychological is, at best, insulting to MS patients. First of all, I never said that. I pointed out there there are psychological aspects to it, and argued that there may be some patients diagnosed with MS who have a psychosomatic illness. What % that is, we don't know. I would also argue that it is very unhelpful for you to have that attitude, and it is a reflection of the bias against psychiatric illness that is so prevalent in society. It also goes against what we know about how the brain works. It has been pretty conclusively demonstrated by Noakes and others that psychosomatic fatigue is a fundamental part of the human brain, and likely all mammals as well. Saying that psychosomatic symptoms are somehow bad - or imaginary - is fundamentally misrepresenting the science. Unfortunately this is a very common attitude. I saw last week one of the world's top medical researchers say that changes in mitochondrial activity prove that an illness is not psychosomatic. That statement is, of course, demonstrably false, because cortisol (and therefore stress) reduces mitochondrial activity.