6 ms·

There are some opinions expressed in the comments here that are not consistent with a consensus report recently published by the Institute of Medicine [1]. The

by blennon 12y ago

There are some opinions expressed in the comments here that are not consistent with a consensus report recently published by the Institute of Medicine [1]. The committee argues that, "ME/CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients. In its most severe form, this disease can consume the lives of those whom it afflicts. It is 'real.' It is not appropriate to dismiss these patients by saying, 'I am chronically fatigued, too'". Theodore Ganiats, one of the committee members wrote, "The literature review found sufficient evidence that ME/CFS is a disease with a physiologic basis. It is not, as many clinicians believe, a psychological problem that should not be taken seriously" [2]. The committee proposed new diagnostic criteria and a new name "systemic exertion intolerance disease". In my opinion, getting past the psychological and psychosomatic theories of CFS is a huge step towards meaningful research funding to address this disease. The IOM publication [1] and committee members efforts to disseminate the findings of this report [2,3] to the medical community is a big step forward. [1] http://www.iom.edu/Reports/2015/ME-CFS.aspx http://www.iom.edu/Reports/2015/ME-CFS.aspx [2] http://annals.org/article.aspx?articleid=2118972 http://annals.org/article.aspx?articleid=2118972 [3] http://jama.jamanetwork.com/article.aspx?articleid=2118591 http://jama.jamanetwork.com/article.aspx?articleid=2118591

tomhoward 12y ago
I've had CFS for several years, have tried all kinds of medical and natural remedies, and am finally having good success in overcoming it. From this experience, here are my thoughts: - I do believe its primary cause is psychological, but it's symptoms are real, physical and profound. - I do believe it should be taken very seriously by mainstream medicine. - I believe it can be cured, but not by focusing exclusively on physical symptoms, or through any treatments currently offered by conventional mental health professionals. The best progress I've made in overcoming the condition is through a non-medical treatment to identify and correct subconscious traumas and self-sabotaging beliefs. The closest thing in mainstream medicine is CBT, but what I'm doing seems far more effective.
- blennon 12y ago
  Can you elaborate on your personal protocol?
  - tomhoward 12y ago
    The practice I use is a technique developed in the chiropractic profession called Neuro Emotional Technique, commonly referred to as NET. I'm well aware that chiro attracts much contempt in forums like this one, and indeed I'm not in any way a devotee of chiro generally (anymore). But I was made aware of NET when I was trying chiro as a possible treatment for my condition, and found that whilst conventional chiro didn't help much, NET helped a lot. I've since learned how to do it myself without the help of a practitioner, so I can do it daily without having to spend the time or money visiting a clinic. I've also found my progress has accelerated since I started doing a particular kind of yoga called Kundalini. I now try and do that daily too. NET is just one of many techniques for improving the subconscious mind; others include more traditional practices like meditation, hypnosis, prayer, as well as more recently-developed ones like neuro-linguistic programming and emotional freedom technique ('tapping'). But I've tried all these over many years, and NET has been by far the most effective.
- empressplay 12y ago
  I too have CFS/FM (and have had for over 20 years) and have a middle-ground theory that there are both physical and psychological components to the symptoms. On the physical side, there is an obvious inflammatory immune response going on. I'm allergic to just about everything. I have IBS, I have GERD. On the psychological side, this inflammation causes a constant sense of panic. The symptoms of the anxiety cause muscle tenseness and lead to further inflammation. The adrenaline causes me to be tired after low levels of exertion. I've learned to manage the anxiety through mindfulness and CBT (some days are better than others) but the chronic inflammation is still there. So, while I agree with you that there is a psychological component and that treating it helps CFS sufferers to cope, I think it's a chicken-and-egg argument at this point about which started which. I wouldn't jump to the conclusion that it's all psychological just based on having some improvement to quality-of-life by working on your mental health. Not that it's not worthwhile -- it definitely is -- it just probably isn't the whole 'answer".
lukestevens 12y ago
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.
practicalpants 12y ago
> The literature review found sufficient evidence that ME/CFS is a disease with a physiologic basis. It is not, as many clinicians believe, a psychological problem that should not be taken seriously It feels so weird to separate the psychological and physiological so cleanly. It seems obvious psychological stresses can damage someone physiologically over time, and vis versa. Otherwise you are making a claim that 'mind' and 'body' are separate, an outdated viewpoint originating in ancient times when everyone believed in the soul. It just seems that having a certain type of prolonged psychological outlook (say, being stressed to death because of school, work, social pressures, existential angst, etc.) can cause serious, and 'real' physical issues and imbalances, enough for doctors to label something as a syndrome.
- Klinky 12y ago
  Do we tell cancer or AIDS patients their only hope is to change their outlook on life? No. We know the physiological cause and treat it. A psychosomatic diagnosis is often a cop out when your illness doesn't fall within the confines of a doctor's knowledge. You should never take such a diagnosis at face value. There is so much we don't know about the impact of viruses & microbes on our immune system.
  - collyw 12y ago
    Likewise, there is so much we don't know about the effects of psychology on our immune system. We can see that stress has a negative effect on health, why wouldn't the opposite be true?
  - practicalpants 12y ago
    > Do we tell cancer or AIDS patients their only hope is to change their outlook on life? No. We know the physiological cause and treat it. Well, this is the worst possible interpretation of my point, or whatever they call that in debate circles. I never said all physical ailments have a psychological basis, obviously a virus doesn't, just some of them very well could. I think it's crazy as well as ignores a lot of evidence out there to rule out all physical ailments from having a psychological basis. A scenario often cited towards this is the plunge in life expectancy across the board following the collapse of communism in ex-communist states, due to tremendous amounts of stress from a forced change in your way of life. Clearly psychological dimensions can affect your physical health and balance of systems in your body. I agree that such a diagnosis should only be a last resort, but I disagree that it should never be considered a valid diagnosis.

by blennon 12y ago

tomhoward 12y ago

I've had CFS for several years, have tried all kinds of medical and natural remedies, and am finally having good success in overcoming it. From this experience, here are my thoughts: - I do believe its primary cause is psychological, but it's symptoms are real, physical and profound. - I do believe it should be taken very seriously by mainstream medicine. - I believe it can be cured, but not by focusing exclusively on physical symptoms, or through any treatments currently offered by conventional mental health professionals. The best progress I've made in overcoming the condition is through a non-medical treatment to identify and correct subconscious traumas and self-sabotaging beliefs. The closest thing in mainstream medicine is CBT, but what I'm doing seems far more effective.

blennon 12y ago
Can you elaborate on your personal protocol?
- tomhoward 12y ago
  The practice I use is a technique developed in the chiropractic profession called Neuro Emotional Technique, commonly referred to as NET. I'm well aware that chiro attracts much contempt in forums like this one, and indeed I'm not in any way a devotee of chiro generally (anymore). But I was made aware of NET when I was trying chiro as a possible treatment for my condition, and found that whilst conventional chiro didn't help much, NET helped a lot. I've since learned how to do it myself without the help of a practitioner, so I can do it daily without having to spend the time or money visiting a clinic. I've also found my progress has accelerated since I started doing a particular kind of yoga called Kundalini. I now try and do that daily too. NET is just one of many techniques for improving the subconscious mind; others include more traditional practices like meditation, hypnosis, prayer, as well as more recently-developed ones like neuro-linguistic programming and emotional freedom technique ('tapping'). But I've tried all these over many years, and NET has been by far the most effective.
empressplay 12y ago
I too have CFS/FM (and have had for over 20 years) and have a middle-ground theory that there are both physical and psychological components to the symptoms. On the physical side, there is an obvious inflammatory immune response going on. I'm allergic to just about everything. I have IBS, I have GERD. On the psychological side, this inflammation causes a constant sense of panic. The symptoms of the anxiety cause muscle tenseness and lead to further inflammation. The adrenaline causes me to be tired after low levels of exertion. I've learned to manage the anxiety through mindfulness and CBT (some days are better than others) but the chronic inflammation is still there. So, while I agree with you that there is a psychological component and that treating it helps CFS sufferers to cope, I think it's a chicken-and-egg argument at this point about which started which. I wouldn't jump to the conclusion that it's all psychological just based on having some improvement to quality-of-life by working on your mental health. Not that it's not worthwhile -- it definitely is -- it just probably isn't the whole 'answer".

lukestevens 12y ago

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.

practicalpants 12y ago

> The literature review found sufficient evidence that ME/CFS is a disease with a physiologic basis. It is not, as many clinicians believe, a psychological problem that should not be taken seriously It feels so weird to separate the psychological and physiological so cleanly. It seems obvious psychological stresses can damage someone physiologically over time, and vis versa. Otherwise you are making a claim that 'mind' and 'body' are separate, an outdated viewpoint originating in ancient times when everyone believed in the soul. It just seems that having a certain type of prolonged psychological outlook (say, being stressed to death because of school, work, social pressures, existential angst, etc.) can cause serious, and 'real' physical issues and imbalances, enough for doctors to label something as a syndrome.

Klinky 12y ago
Do we tell cancer or AIDS patients their only hope is to change their outlook on life? No. We know the physiological cause and treat it. A psychosomatic diagnosis is often a cop out when your illness doesn't fall within the confines of a doctor's knowledge. You should never take such a diagnosis at face value. There is so much we don't know about the impact of viruses & microbes on our immune system.
- collyw 12y ago
  Likewise, there is so much we don't know about the effects of psychology on our immune system. We can see that stress has a negative effect on health, why wouldn't the opposite be true?
- practicalpants 12y ago
  > Do we tell cancer or AIDS patients their only hope is to change their outlook on life? No. We know the physiological cause and treat it. Well, this is the worst possible interpretation of my point, or whatever they call that in debate circles. I never said all physical ailments have a psychological basis, obviously a virus doesn't, just some of them very well could. I think it's crazy as well as ignores a lot of evidence out there to rule out all physical ailments from having a psychological basis. A scenario often cited towards this is the plunge in life expectancy across the board following the collapse of communism in ex-communist states, due to tremendous amounts of stress from a forced change in your way of life. Clearly psychological dimensions can affect your physical health and balance of systems in your body. I agree that such a diagnosis should only be a last resort, but I disagree that it should never be considered a valid diagnosis.