4 ms·

>>Chronic fatigue syndrome and, now, chronic Lyme disease are probably more related to depression than to any external biological agent like a virus or bacteriu

by Malcx 12y ago

>>Chronic fatigue syndrome and, now, chronic Lyme disease are probably more related to depression than to any external biological agent like a virus or bacterium. As someone whose partner has CFS (since she was aged 12) I have to disagree strongly on this, although my experiences are anecdotal I'm more than 99% sure CFS is a physical condition rather than mental. Having also studied much of the scientific literature of the past few years I'd be strongly critical of your assertion based on the results of any respected doctor or controlled study. Unfortunately suggesting it's a mental condition has resulted in such helpful suggestions from doctors as "get a new hair cut to cheer you up" which is akin to telling a cancer sufferer that lipstick might help. I'd be happy to discuss further and provide numerous studies suggesting it is a result of a (most likely) viral infection that has had long term repercussions on the immune system. There are scammers out there, but it's not the patients or the majority of doctors - at least in the UK. Disclaimer: I'm currently working on a data gathering problem related to this as a side project with a view to crowdsourced funding.

zeroviscosity 12y ago
If you need any help with your data project I'd be happy to volunteer my time.
- Malcx 12y ago
  Thanks - email in my profile, please drop me a quick message...
cpncrunch 12y ago
Having recovered from CFS myself and researched it for about 15 years, it seems highly likely it is psychosomatic rather than organic. The literature seems to point in this direction -- that it is a condition caused by chronic stress. (Interestingly the biomarker found in this study is also found in PTSD and in abused women). I think you've hit the nub of the problem with your statement that you're "more than 99% sure CFS is a physical condition". The majority of people (including many doctors) simply don't understand certain basic facts about how the body works (such as the fact that cortisol is a stress hormone, but also one of the main modulators of the immune system). Most people still have a Cartesian/Victorian view of the human body, and believe that the mind and body are completely separate. Telling someone to "get a new hair cut to cheer you up" won't be much use for major depression or PTSD either. Comments like this just perpetuate the misconception/prejudice that psychiatric conditions aren't real illnesses. I think it's a combination of this prejudice, combined with a misunderstanding of how the body works, that has caused most of the problems relating to understanding CFS.
- Malcx 12y ago
  Interesting thoughts and it's always good to hear from those who've recovered, hopefully yours was full? I'm always open to differing views, so would be interested in any recent papers pointing to a psychosomatic cause, especially as this seems to be an area active research is moving away from. I completely agree the mind/body need to be treated more as a single entity, but the researchers and clinicians I've been engaged with are most certainly looking at this in a non Cartesian way. Nb these are not general practice doctors. Again, I'm comp sci rather than medical, so my experiences are anecdotal but a good many of the CFS patients I've known have not been under chronic stress with the often exception of CFS seemingly being triggered by a viral infection such as glandular fever. I can't comment on whether cortisol levels remain high. Fundamentally there is so much we don't understand about what may in fact be a group of illnesses, hence why people's personal stories seem to fall into two or three conflicting camps. We need more data to go on, which is why I've a side project looking to address this which will hopefully lead to more areas of research.
  - cpncrunch 12y ago
    Yes, my recovery was full. I haven't had any symptoms in about 15 years, so I think that is a fair assumption to make. Studies do show that the majority of CFS patients report more stressful life events preceding their illness than controls (e.g. Salit 1997, Hatcher et al. 2003, Theorell et al. 1999). Also, from speaking to patients, you do very often find that they lived stressful lives prior to developing CFS. Also bear in mind that it may be burnout more than stress that is important in triggering the illness, and it appears to be possible to have burnout even in the absence of stress (see for example Pruessner et al., 1999). Infections also activate the HPA axis in a similar way to psychogolical stress, and it may be a combination of stress and infection that causes CFS. (Some studies show that gulf war syndrome is more likely if vaccinations occur during the stress of combat). Alternatively the viral infection at onset might simply be due to suppression of the immune system due to stress. If you're interested, here is my theory of CFS: https://peerj.com/preprints/860/ https://peerj.com/preprints/860/ Feel free to email me or leave a comment there if you have any comments. If you're interested in this area, I'd recommend reading the full-text of the studies in my references -- let me know if you want the full-text of any of them. Like you I'm compsci rather than medical, but IMO a lot of the medical people aren't really doing a good job at figuring out this illness.

by Malcx 12y ago

zeroviscosity 12y ago

If you need any help with your data project I'd be happy to volunteer my time.

Malcx 12y ago
Thanks - email in my profile, please drop me a quick message...

cpncrunch 12y ago

Having recovered from CFS myself and researched it for about 15 years, it seems highly likely it is psychosomatic rather than organic. The literature seems to point in this direction -- that it is a condition caused by chronic stress. (Interestingly the biomarker found in this study is also found in PTSD and in abused women). I think you've hit the nub of the problem with your statement that you're "more than 99% sure CFS is a physical condition". The majority of people (including many doctors) simply don't understand certain basic facts about how the body works (such as the fact that cortisol is a stress hormone, but also one of the main modulators of the immune system). Most people still have a Cartesian/Victorian view of the human body, and believe that the mind and body are completely separate. Telling someone to "get a new hair cut to cheer you up" won't be much use for major depression or PTSD either. Comments like this just perpetuate the misconception/prejudice that psychiatric conditions aren't real illnesses. I think it's a combination of this prejudice, combined with a misunderstanding of how the body works, that has caused most of the problems relating to understanding CFS.

Malcx 12y ago
Interesting thoughts and it's always good to hear from those who've recovered, hopefully yours was full? I'm always open to differing views, so would be interested in any recent papers pointing to a psychosomatic cause, especially as this seems to be an area active research is moving away from. I completely agree the mind/body need to be treated more as a single entity, but the researchers and clinicians I've been engaged with are most certainly looking at this in a non Cartesian way. Nb these are not general practice doctors. Again, I'm comp sci rather than medical, so my experiences are anecdotal but a good many of the CFS patients I've known have not been under chronic stress with the often exception of CFS seemingly being triggered by a viral infection such as glandular fever. I can't comment on whether cortisol levels remain high. Fundamentally there is so much we don't understand about what may in fact be a group of illnesses, hence why people's personal stories seem to fall into two or three conflicting camps. We need more data to go on, which is why I've a side project looking to address this which will hopefully lead to more areas of research.
- cpncrunch 12y ago
  Yes, my recovery was full. I haven't had any symptoms in about 15 years, so I think that is a fair assumption to make. Studies do show that the majority of CFS patients report more stressful life events preceding their illness than controls (e.g. Salit 1997, Hatcher et al. 2003, Theorell et al. 1999). Also, from speaking to patients, you do very often find that they lived stressful lives prior to developing CFS. Also bear in mind that it may be burnout more than stress that is important in triggering the illness, and it appears to be possible to have burnout even in the absence of stress (see for example Pruessner et al., 1999). Infections also activate the HPA axis in a similar way to psychogolical stress, and it may be a combination of stress and infection that causes CFS. (Some studies show that gulf war syndrome is more likely if vaccinations occur during the stress of combat). Alternatively the viral infection at onset might simply be due to suppression of the immune system due to stress. If you're interested, here is my theory of CFS: https://peerj.com/preprints/860/ https://peerj.com/preprints/860/ Feel free to email me or leave a comment there if you have any comments. If you're interested in this area, I'd recommend reading the full-text of the studies in my references -- let me know if you want the full-text of any of them. Like you I'm compsci rather than medical, but IMO a lot of the medical people aren't really doing a good job at figuring out this illness.