Recovery overstated in Schizophrenia?
Much has been printed in the press about improving outcomes for people with schizophrenia during the past decade. While this is certainly what we all want as family members, this editorial by professors at the University of Toronto (Canada) in the journal "Psychiatric Services" comments that psychiatrists may be overstating the case when they talk too much about "recovery".
In our experience here at schizophrenia.com - we frequently hear about success stories where people are frequently able to achieve significant accomplishments (e.g. Pam Wagner's recent book publishing with her sister (see previous posting) - but these people also go through significant difficult times (as you can quickly see when you read back through Pam's onling web log (blog) called Wagblog. However, even Pam is an unusually successful woman and a rare case. Somewhere between excessive optimism for recovery, and excessively negative prognosis - individuals and families need to find a balance that is right for their situation. While generalities are interesting, everyone is different and every person needs the best possible treatment. Our recommendation is for people who have schizophrenia, and their family members, to take it day by day - and do the best you can, but at the same time expect setbacks and challenges as part of the process.
The journal editorial suggests in an article titled "Overstating the Case About Recovery?"
Schizophrenia and its outcomes are heterogeneous, and it is imperative that we maintain optimism as we undertake treatment of affected individuals. Gains have been made with the newer antipsychotics, but to suggest that the magnitude of these allow us to now embrace "recovery" as the appropriate goal is a blatant misinterpretation of existing evidence. Such a position may invoke hope, but it is deceiving to people with schizophrenia and their families, because it suggests that we somehow now have the knowledge and tools to make this happen on a routine basis. Could it be that this newfound discussion of recovery is being driven by the pharmaceutical industry, in the same fashion that the industry characterized the limited neurocognitive benefits of certain antipsychotics as a substantive gain in order to market these medications in recent years?
See Full Article: Overstating the Case About Recovery?
Posted by szadmin at August 22, 2005 10:10 AM
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Schizophrenia Coping
I find it interesting that you discourage making generalizations and then do just that by suggesting that "people who have schizophrenia, and their family members, to take it day by day - and do the best you can, but at the same time expect setbacks and challenges as part of the process."
Expect setbacks? Why would someone have such an expectation? Yes, acknowledge that there may be setbacks, but please don't encourage people to live their lives with such absolutes. That's certainly not in line with the recovery philosophy. And, as far as I'm concerned, it keeps the focus on the problem rather than the solution.
Posted by: Renee at August 23, 2005 10:55 AM
The trouble with the article is what is the trouble with most statements about this disease: the terms being tossed about are never actually defined and an agreed-upon definition stated at the outset of the writing. What is 'recovery'? The word is a vague one and a hot one, that can mean anything from 'no symptoms, no medicine and never a problem', to 'staying on medicines and putting up with a lot'.
First, define the word 'recovery'. To me, recovery doesn't mean 'cure'. It means adjusting and coping successfully with an illness that is unlikely to simply disappear one day. 'Success' for one person (say, a multiply handicapped, severely retarded person with schizophrenia) may be allowing someone to feed them with a spoon. For another person with mild illness and no other conditions, success may mean coping with the stress of running a complex education program at a teaching hospital and attending numerous conferences, like Fred Frese.
The statement above 'expect setbacks' is quite reasonable. But what setback it is is different for each person.
Posted by: slc2 at August 25, 2005 06:00 AM
The article is correct.Most people do not recover from schizophrenia.The so called new anti-pyschotic drugs available do not improve the chances for full recovery and are a waste of resourses and tax dollars.The only ones benefiting from the present Mental Health Care System are the people who are employed by it.
Posted by: wendysystems at August 31, 2005 12:53 PM
Hi Rennee,
I apologize if I came across as too negative in the story. Perhaps the better position would, with regard to schizophrenia, be to "anticipate that there may likely be setbacks" in dealing with schizophrenia, just as there are common setbacks in dealing with any long-term disease process. I think you can be hopeful, at the same time anticipating times of more difficulty.
SLC2 - absolutely, one of the problems is that the words used are poorly defined. Recovery to me means recovery just as when you recover from the flu or other temporary illness. But what many people seem to miss is that "recovery" in schizophrenia is typically very different. With schizophrenia, "recovery" means coping and hopefully enjoying life - but generally not at the same level as one was coping prior to the illness. I think this point is frequently lost when groups start marketing too hard. Recovery should definitely be a goal - but it should also be recognized that the definition of "recovery" is likely to be differnt than with temporary illnesses like the flu.
Lastly, with regard to WENDYSYSTEMS,
I completely disagree - there is no question that the scientific research shows repeatedly that anti-psychotic drugs help a great many people in reduced symptoms and quality of life. Are they a cure - not a chance - but I don't think anyone has every said they were. But most people working directly with people who have schizophrenia will, I think, would never say that they are a "waste of money". You really need to look at the research, and talk to the thousands of people in our discussion areas who talk about how much things are better with the antipsychotic drugs. You are, quite simply, wrong.
While skepticism when dealing with any commercial operation is a good idea, and this is no different with the pharma companies than with automotive sales people, but outright cynicism is unwarranted and harmful if it stops people from seeking out what is probably the best treatment available for schizophrenia today. I encourage you to remain skeptical, but stop the cynicism as it could ultimately harm a lot of people and shows a lack of in-depth knowlegde on the topic area. Read the research from the independent government-sponsored labs. Unless you believe in vast conspiracies, I suspect that you'll agree that repeated studies by independent academics are the only way to truly find out if a given medication works or not.
Posted by: Sz Administrator at September 4, 2005 12:29 PM
I totally disagree with the idea that schizophrenia is a disease and people who have it must be recovered. They are only on a different dimension in which we do not have access. Psychiatry should not be related with medicine, but with metaphysics.
Posted by: Florist UK at September 8, 2006 11:01 AM
The disease Schizophrenia have to be treated day be day but .Most people do not recover from schizophrenia and for full recovery anti-pyschotic drugs are avaible
Posted by: drug rehab at September 12, 2006 12:35 PM
The stigma of schizophrenia is a barrier to those trying to rehabilitate themselves. It is also a very real problem for their families whose understanding and support are essential.
Posted by: Opiate Detox at October 25, 2006 02:23 PM
It would be nice to have good data about how to have this disease, and deal with it with out drugs. I know that the drugs do help, but they do not say for sure how they work. My hope would be for a patient to be able to manage this disease with out taking a drug that will eventually make you dependent on it. I see a lot of research about how this drugs helps, but not a lot of people saying that they can manage with out it. I heard that schizophrenia was similar to diabeaties. THIs means that you have to have some sort of medicine or you can not survive. THere is a 100% effective test to find out if you have this disease and how to treat it. It is possitive that this type of treatment works, but not with schizophrenia. It would be nice to hear from people who have this same view point of no medicine if not 100% needed, like in diabeaties. Don't get me wrong I like drugs and I like the way they make me feel, but I quite smoking and everything else I did for a reason, and it was not to get back on drugs. Expessially every day. THere should be a way to take a drug when you really need on, like with diabeaties. THey don't just push pill after pill down your mouth, they monitor the levels and then administer what is needed, a more of an exact science. A less of a ginne pig feel. That would be nice. The lowest levels posible.
Posted by: just schizo at January 17, 2007 09:34 AM
I have been recovering from schizophrenia by reducing all excess stress, simplifying my life and taking a ton of b-vitamins and anti-oxidants (co-q10, alpha lipoic acid etc). I also found melatonin to be a godsend as it allowed me to sleep for 8 hours and had no real side affects. I now have less than 5% of the mental symptoms I once had. I just turned 40 and had symptoms since i was 21-22 - it took about 4-5 years of real effort to get to this point. I also kept to myself but in my case it helped as I would not have to live up to peoples silly expectations that i would be normal like them. I would not wish this condition on my worst enemy. Dont lose hope! I now work for an engineer as a designer draftsman for building systems (elec/plb/hvac).
Posted by: Long Road Dave at April 28, 2007 03:27 PM
I find it interesting that you discourage making generalizations and then do just that by suggesting that "people who have schizophrenia, and their family members, to take it day by day - and do the best you can, but at the same time expect setbacks and challenges as part of the process."
Expect setbacks? Why would someone have such an expectation? Yes, acknowledge that there may be setbacks, but please don't encourage people to live their lives with such absolutes. That's certainly not in line with the recovery philosophy. And, as far as I'm concerned, it keeps the focus on the problem rather than the solution.
Posted by: Renee at August 23, 2005 10:55 AM
The trouble with the article is what is the trouble with most statements about this disease: the terms being tossed about are never actually defined and an agreed-upon definition stated at the outset of the writing. What is 'recovery'? The word is a vague one and a hot one, that can mean anything from 'no symptoms, no medicine and never a problem', to 'staying on medicines and putting up with a lot'.
First, define the word 'recovery'. To me, recovery doesn't mean 'cure'. It means adjusting and coping successfully with an illness that is unlikely to simply disappear one day. 'Success' for one person (say, a multiply handicapped, severely retarded person with schizophrenia) may be allowing someone to feed them with a spoon. For another person with mild illness and no other conditions, success may mean coping with the stress of running a complex education program at a teaching hospital and attending numerous conferences, like Fred Frese.
The statement above 'expect setbacks' is quite reasonable. But what setback it is is different for each person.
Posted by: slc2 at August 25, 2005 06:00 AM
The article is correct.Most people do not recover from schizophrenia.The so called new anti-pyschotic drugs available do not improve the chances for full recovery and are a waste of resourses and tax dollars.The only ones benefiting from the present Mental Health Care System are the people who are employed by it.
Posted by: wendysystems at August 31, 2005 12:53 PM
Hi Rennee,
I apologize if I came across as too negative in the story. Perhaps the better position would, with regard to schizophrenia, be to "anticipate that there may likely be setbacks" in dealing with schizophrenia, just as there are common setbacks in dealing with any long-term disease process. I think you can be hopeful, at the same time anticipating times of more difficulty.
SLC2 - absolutely, one of the problems is that the words used are poorly defined. Recovery to me means recovery just as when you recover from the flu or other temporary illness. But what many people seem to miss is that "recovery" in schizophrenia is typically very different. With schizophrenia, "recovery" means coping and hopefully enjoying life - but generally not at the same level as one was coping prior to the illness. I think this point is frequently lost when groups start marketing too hard. Recovery should definitely be a goal - but it should also be recognized that the definition of "recovery" is likely to be differnt than with temporary illnesses like the flu.
Lastly, with regard to WENDYSYSTEMS,
I completely disagree - there is no question that the scientific research shows repeatedly that anti-psychotic drugs help a great many people in reduced symptoms and quality of life. Are they a cure - not a chance - but I don't think anyone has every said they were. But most people working directly with people who have schizophrenia will, I think, would never say that they are a "waste of money". You really need to look at the research, and talk to the thousands of people in our discussion areas who talk about how much things are better with the antipsychotic drugs. You are, quite simply, wrong.
While skepticism when dealing with any commercial operation is a good idea, and this is no different with the pharma companies than with automotive sales people, but outright cynicism is unwarranted and harmful if it stops people from seeking out what is probably the best treatment available for schizophrenia today. I encourage you to remain skeptical, but stop the cynicism as it could ultimately harm a lot of people and shows a lack of in-depth knowlegde on the topic area. Read the research from the independent government-sponsored labs. Unless you believe in vast conspiracies, I suspect that you'll agree that repeated studies by independent academics are the only way to truly find out if a given medication works or not.
Posted by: Sz Administrator at September 4, 2005 12:29 PM
I totally disagree with the idea that schizophrenia is a disease and people who have it must be recovered. They are only on a different dimension in which we do not have access. Psychiatry should not be related with medicine, but with metaphysics.
Posted by: Florist UK at September 8, 2006 11:01 AM
The disease Schizophrenia have to be treated day be day but .Most people do not recover from schizophrenia and for full recovery anti-pyschotic drugs are avaible
Posted by: drug rehab at September 12, 2006 12:35 PM
The stigma of schizophrenia is a barrier to those trying to rehabilitate themselves. It is also a very real problem for their families whose understanding and support are essential.
Posted by: Opiate Detox at October 25, 2006 02:23 PM
It would be nice to have good data about how to have this disease, and deal with it with out drugs. I know that the drugs do help, but they do not say for sure how they work. My hope would be for a patient to be able to manage this disease with out taking a drug that will eventually make you dependent on it. I see a lot of research about how this drugs helps, but not a lot of people saying that they can manage with out it. I heard that schizophrenia was similar to diabeaties. THIs means that you have to have some sort of medicine or you can not survive. THere is a 100% effective test to find out if you have this disease and how to treat it. It is possitive that this type of treatment works, but not with schizophrenia. It would be nice to hear from people who have this same view point of no medicine if not 100% needed, like in diabeaties. Don't get me wrong I like drugs and I like the way they make me feel, but I quite smoking and everything else I did for a reason, and it was not to get back on drugs. Expessially every day. THere should be a way to take a drug when you really need on, like with diabeaties. THey don't just push pill after pill down your mouth, they monitor the levels and then administer what is needed, a more of an exact science. A less of a ginne pig feel. That would be nice. The lowest levels posible.
Posted by: just schizo at January 17, 2007 09:34 AM
I have been recovering from schizophrenia by reducing all excess stress, simplifying my life and taking a ton of b-vitamins and anti-oxidants (co-q10, alpha lipoic acid etc). I also found melatonin to be a godsend as it allowed me to sleep for 8 hours and had no real side affects. I now have less than 5% of the mental symptoms I once had. I just turned 40 and had symptoms since i was 21-22 - it took about 4-5 years of real effort to get to this point. I also kept to myself but in my case it helped as I would not have to live up to peoples silly expectations that i would be normal like them. I would not wish this condition on my worst enemy. Dont lose hope! I now work for an engineer as a designer draftsman for building systems (elec/plb/hvac).
Posted by: Long Road Dave at April 28, 2007 03:27 PM