I've suffered with ME / FM for 25 years and it's my firm opinion there are no clean hands in this debate. Doctors, frustrated by an ability to find a conventional diagnosis and thus treatment for their patients, want to try to blame it on psychology. Sufferers, afraid of losing access to medication, or simply due to their own negative opinion of psychological conditions, insist vehemently that their ills have no relation to mental health at all.
Of course, the truth probably lies somewhere in the middle. ME / CFS most certainly encourages depression in those who suffer from it (both physically and mentally), and depression leads to behaviour (such as spending daylight hours indoors, engaging in minimal activity, poor eating habits) that aggravate ME / CFS symptoms and lead to a downward spiral. The best treatment currently available addresses both the physical symptoms and the mental fallout, and it's my firm belief that therapy and CBT is integral to managing ME / CFS, at the very least to allow sufferers the best quality of life they can have under the circumstances.
MD here. I agree with this completely. I will also add that Chronic Fatigue Syndrome is unlikely one disease although we are not smart enough yet to know to divide them more specifically.
I've "fixed" cases like this by diagnosing and treating rare rheumatological and sleep disorders. However, most patients clearly have psych or personality disorders. Is the mental illness a cause or effect?
It's my job not to give up and blow off patients. Just realize that there is a ton about medicine that is unknown still--we are scientists searching for answers too.
Sleep disorders are notorious for bringing on mental problems as well, including (but not limited to) severe depression. Meanwhile depression can cause sleep issues all by itself.
Teasing out cause and effect for patients like this must be a nightmare.
The situation is not unique in that a search and replace with obesity or addiction plays back nearly as accurately.
If there's a commonality of failure to understand and control very large systems with very complicated feedback loops, maybe improvement in that area might simultaneously lead to better solutions in all those problem areas. Given enough progress, even Economics might rise past the level of mere astrology and PR.
What could a startup do? Well, crazy as it sounds, systems analysis as a service, maybe? There are already MOOC companies maybe they could offer graduate level classes in control theory. Maybe startups working in giant feedback filled systems like cloud-whatever would make general progress in the field as part of getting their specific system to stabilize. I'm guessing any possible progress would be a side effect of those companies. For direct applications maybe real time augmented reality feedback, somehow.
Certainly mental health, like physical health, is not binary and being sick and unhappy is certainly worse than being equally sick and slightly more happy, or at least more content. In that way the possibilities for startups related to the problem expand. A startup focused on teaching meditation. Or a startup to do biofeedback to increase pain tolerance. A startup to increase feeling of community, assuming the community would be positive and assuming the victims are not feeling introverted.
Thanks for the clear train of thought. It took me years to realize this, but I was 16 when CFS took me down for almost 15 years: Not the age that you are trained already to think through independently. Being a patient brings a special role-model that forces you to be still, at home, quiet and dependent. I call that the 'ideal patient', it makes you a psychological mess. So yes, this is a result from a physical illness.
On the one hand: I found, after 10 years, that dry air on mountaintops really helped me, so we moved from the Netherlands to Munich for a dryer climate. It turns out that my joints ache from humid air, the pain makes the muscles stiff, that makes me so tired. Also sleeping did not help, because I get only stiff and sweaty in the wrong climate. In Munich I could finally go to the gym every day to get in better shape. Now I live in the Netherlands again with a huge airco and infra-red heating system in de ceiling. I get healthy with one click on a button now.
On the other hand: There is a study showing that cancer patients that have CFS recover after chemo also from CFS. I had chemo and recovered very well indeed. This indicates that the immune system is involved.
So, I only know now what works best for my personal case. Everything else stays a big question mark.
Since there are a lot of different patient groups taken together under the name of CFS, so it is not clear if my solution will help more people. That's also why there is not one cure for all. There is not one cure for all these different groups, there are a lot of cures, yet to be found, for all these groups. It is best to search for your own 'painkiller', it's for now the only way. This is very hard while being ill in the first place, with all the other worries that come along with chronicle illness. I am glad that I just kept on trying to find a solution, also when all others lost faith (only my husband kept believing in me getting better) and not let others force the idea of me being a 'lazy psychological patient' upon me. I wish you all strength and fortune in your quest for a healthy feeling body.
Comments
I've suffered with ME / FM for 25 years and it's my firm opinion there are no clean hands in this debate. Doctors, frustrated by an ability to find a conventional diagnosis and thus treatment for their patients, want to try to blame it on psychology. Sufferers, afraid of losing access to medication, or simply due to their own negative opinion of psychological conditions, insist vehemently that their ills have no relation to mental health at all.
Of course, the truth probably lies somewhere in the middle. ME / CFS most certainly encourages depression in those who suffer from it (both physically and mentally), and depression leads to behaviour (such as spending daylight hours indoors, engaging in minimal activity, poor eating habits) that aggravate ME / CFS symptoms and lead to a downward spiral. The best treatment currently available addresses both the physical symptoms and the mental fallout, and it's my firm belief that therapy and CBT is integral to managing ME / CFS, at the very least to allow sufferers the best quality of life they can have under the circumstances.
MD here. I agree with this completely. I will also add that Chronic Fatigue Syndrome is unlikely one disease although we are not smart enough yet to know to divide them more specifically.
I've "fixed" cases like this by diagnosing and treating rare rheumatological and sleep disorders. However, most patients clearly have psych or personality disorders. Is the mental illness a cause or effect?
It's my job not to give up and blow off patients. Just realize that there is a ton about medicine that is unknown still--we are scientists searching for answers too.
Sleep disorders are notorious for bringing on mental problems as well, including (but not limited to) severe depression. Meanwhile depression can cause sleep issues all by itself.
Teasing out cause and effect for patients like this must be a nightmare.
The situation is not unique in that a search and replace with obesity or addiction plays back nearly as accurately.
If there's a commonality of failure to understand and control very large systems with very complicated feedback loops, maybe improvement in that area might simultaneously lead to better solutions in all those problem areas. Given enough progress, even Economics might rise past the level of mere astrology and PR.
What could a startup do? Well, crazy as it sounds, systems analysis as a service, maybe? There are already MOOC companies maybe they could offer graduate level classes in control theory. Maybe startups working in giant feedback filled systems like cloud-whatever would make general progress in the field as part of getting their specific system to stabilize. I'm guessing any possible progress would be a side effect of those companies. For direct applications maybe real time augmented reality feedback, somehow.
Certainly mental health, like physical health, is not binary and being sick and unhappy is certainly worse than being equally sick and slightly more happy, or at least more content. In that way the possibilities for startups related to the problem expand. A startup focused on teaching meditation. Or a startup to do biofeedback to increase pain tolerance. A startup to increase feeling of community, assuming the community would be positive and assuming the victims are not feeling introverted.
Thanks for the clear train of thought. It took me years to realize this, but I was 16 when CFS took me down for almost 15 years: Not the age that you are trained already to think through independently. Being a patient brings a special role-model that forces you to be still, at home, quiet and dependent. I call that the 'ideal patient', it makes you a psychological mess. So yes, this is a result from a physical illness.
On the one hand: I found, after 10 years, that dry air on mountaintops really helped me, so we moved from the Netherlands to Munich for a dryer climate. It turns out that my joints ache from humid air, the pain makes the muscles stiff, that makes me so tired. Also sleeping did not help, because I get only stiff and sweaty in the wrong climate. In Munich I could finally go to the gym every day to get in better shape. Now I live in the Netherlands again with a huge airco and infra-red heating system in de ceiling. I get healthy with one click on a button now.
On the other hand: There is a study showing that cancer patients that have CFS recover after chemo also from CFS. I had chemo and recovered very well indeed. This indicates that the immune system is involved.
So, I only know now what works best for my personal case. Everything else stays a big question mark.
Since there are a lot of different patient groups taken together under the name of CFS, so it is not clear if my solution will help more people. That's also why there is not one cure for all. There is not one cure for all these different groups, there are a lot of cures, yet to be found, for all these groups. It is best to search for your own 'painkiller', it's for now the only way. This is very hard while being ill in the first place, with all the other worries that come along with chronicle illness. I am glad that I just kept on trying to find a solution, also when all others lost faith (only my husband kept believing in me getting better) and not let others force the idea of me being a 'lazy psychological patient' upon me. I wish you all strength and fortune in your quest for a healthy feeling body.