Friday, 9 April 2010

Why Merete Nordentoft's recent research showing "schizophrenics" to do better without drugs won't change a thing about treatment

Well, in short, because the 19% of study participants reported to be "fully recovered" aren't really fully recovered, but rehabilitated.

A follow-up article in the Danish journal Dagens Medicin portrays Mai Pedersen, a 30-year-old with a high school exam (it's the smart ones who do best, remember?), and with some of the most loving and supportive parents imaginable (it's the ones with a truly idyllic family background who do best, remember?), who was labelled "schizophrenic" seven years ago, put into OPUS (Merete Nordentoft's early intervention program) and on drugs, of course, both neuroleptics and "anti-depressants", and who decided to go off the drugs some time ago. The latter actually, and this is the really disturbing part as the article's title, which translates into "Went off medication - and didn't ask for permission before afterwards", indicates, without asking permission from her shrink. Imagine! She didn't ask her shrink before tapering off the drugs!! How incredibly cheeky!*)

Although Mai Pedersen doesn't take any drugs today, she is "symptom-free". So, according to the article, Mai Pedersen is "fully recovered". But is she really? Mai Pedersen has an enemy. The enemy is stress. And it still has that much power over her as to have her weigh everything she does in regard to how the enemy "stress" probably will react to it. Mai Pedersen has, certainly thanks to CBT-rat training (and yes, it may well make training progress come more swiftly and be more lasting if the rat has some brains), and thanks to her wonderfully supportive parents (yes, relatives can play a decisive role when it comes to "insight" and "compliance", the better they manage to hide their own dysfunctionality behind a facade of pure family idyl, the more of a "support" - for biopsychiatric "treatment" - they will be) learned to live as a victim of "schizophrenia", a slave of a chronic brain disease. She has accepted that nothing ever will come as easy to her as it does to her "normal" friends and acquaintances, that she will have to make sacrifices to the "illness" for the rest of her life, that the "illness" dictates what she can and can't do, and that she maybe even will end up in hospital again, and again, and again... - And btw, take a look at the photograph at the top of the article, and note how beautifully it communicates the heavy burden of suffering from "schizophrenia".

Mai Pedersen succeeded in becoming a licensed psychomotrician, and is a member of the OPUS-panel, which "tries to spread information in the community about the many success stories that show also patients with schizophrenia to be able to live rewarding lives." A real success story. Or, as Mai Pedersen puts it herself, "a lousy Danielle Steele novel". Indeed!

Well well, here it is that I ask, how about a panel to try and spread some information in the community about the many real success stories that show labelled people to be able to overcome their crisis, and live a life without "schizophrenia", without constantly having to be on their guard against an enemy called "stress", without massive limitations and sacrifices, and without having the spectre of returning "psychosis" and re-hospitalization hanging over their heads?? How about a panel to try and spread some information in the community about real recovery, real freedom, to be possible??

But alas, such a panel would probably not consist of a bunch of happy and grateful OPUS-patients (and Mai Pedersen is still a patient today, she still sees her shrink on a regular basis, apropos of "fully recovered"...), a bunch of Elyn Sakses, who identify as being "mentally ill", as suffering from a chronic brain disease by the name of "schizophrenia". So, it is rather unlikely that we will see such a panel initiated by the establishment anytime in the foreseeable future. Just as a paradigm shift in the definition and treatment of crisis is unlikely to happen as long as the Mai Pedersens and Elyn Sakses of this world aren't only made slaves of an alleged illness, but also, and even more important, of a system, that (ab-)uses them big time to sell its hopeless messages and harmful "treatment" to the community.

To get back to Merete Nordentoft's research, the rate of 19% "fully recovered" participants is obviously an error, resulting from an erroneous concept of "full recovery". The true figure probably is closer to 0%, as the study apparently was not designed to include participants, who dropped out of "treatment", but seems to exclusively have concentrated on individuals, who stayed in contact with the mh system throughout the entire five years during which they were monitored. If this is the case, and I have a very strong hunch that it is, not least because the article in Dagens Medicin otherwise probably would have portrayed someone else instead of Mai Pedersen, real full recovery of course is excluded in advance from figuring in the results as a possible outcome. I suppose, this is what is called "biased" then.

A high school exam, the ability to think clearly, and a supportive network, family or other, are without doubt useful in the recovery process. But there is one more important thing , maybe the most important of them all, in terms of recovery that isn't mentioned anywhere in context with Merete Nordentoft's research, and that thing is what Al Siebert termed "resilience". The ability to "resile", or resist (without breaking your neck over it), for instance the massive indoctrination labelled people usually face in the mh system. The ability to preserve one's integrity in an environment designed to strip you entirely of it. Mai Pedersen had the high school exam, but unfortunately she didn't have the amount of resilience necessary to achieve real full recovery, and I also wonder if she would have had her family's support in case she had had the necessary amount of resilience, and had chosen to opt for freedom, instead of for slavery.

*) The title of the article caused some indignation among consumers/survivors, and gave rise to an interesting discussion at a Danish mainstream forum. - Of course I simply had to set the cat among the pigeons... :D - I will write about my thoughts on the matter in a future post here.


Unknown said...

Marian - I thought you were being a little hard on this young woman, but I understand where you are coming from. I ran the article through a Danish translator and it did quite a good job. I agree that the picture portrays schizophrenia as a bleak progosis - can't we see someone really enjoying herself for once? Keep in mind that she is merely thirty years old, and insights come gradually. But, I understand that your point is more about the OPUS program as a breeding ground for low expectations, no matter how raised they seem in comparison to other programs.

Marian said...

Rossa: I know I can come off a bit hard every now and then. I just think, we won't get anywhere unless we call a spade a spade. I see lots of consumers like Mai Pedersen who describe themselves as "recovered" in the sense of "this is as good as it gets", after the system has told them that this is what they are. Such a definition of recovery is problematic, I think, because it, just as the messages about a meaningless brain disease as such, renders people passive, almost paralyzed, in regard to looking for more than just symptom management, in regard to looking for answers, and persuing true recovery.

Of couse I can't know it for sure, but the article left me with the strong impression that Mai Pedersen is convinced that OPUS delivered all the answers she ever can expect to get about her "illness". So, in a way, her journey ends here. The damage is done. She'll probably make an effort to "polish" her coping strategies and stay out of hospital, but the chances for her to make any active effort to really come to an understanding of her crisis are considerably diminished. If ever she's thought of her crisis as a meaningful experience, OPUS has efficiently changed her mind for her (probably also told her that it's dangerous to think too much about "hallucinations", "delusions" etc.), and neither she nor any of the many other people in a situation like hers are served by the wrong considerations, by avoiding to challenge their beliefs and thereby risk to hurt their feelings (and I'm aware that questioning her status as "fully recovered" of course is an insult to her ego, and thus hurting her feelings). IMO, what these people need is a kick in the behind. While all OPUS does is patting them on their heads.

And yes, it is essentially OPUS I'm criticizing. Of course. At the end of the day, Mai Pedersen is just one of hundreds and thousands of victims of this program.