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Wednesday, 2 November 2011
Schizophrenia: 100 years of bad treatment
Imagine for a minute what life might have been like if you'd been diagnosed with schizophrenia in 1911. Shunned by society, you would have been treated with fear and suspicion by many.
With no known cure, you would be subjected to treatment by trial and error, some of which would have gruesome side-effects. Detained by the state, you could expect to be monitored by overworked, underpaid staff and going to church might have been suggested as a way to calm your chaotic mind.
A lot has changed in the 100 years since the term "schizophrenia" was first coined, but perhaps not quite as much as you might think. People living with schizophrenia still experience many of the same problems today.
In 1910, Winston Churchill summed up contemporary attitudes when he wrote to the prime minister, Herbert Asquith, arguing for the mass sterilisation of people with severe mental illness.
Churchill warned that the "feeble-minded and insane classes" constituted a "danger which it is impossible to exaggerate", and that "the source from which the stream of madness is fed should be cut off and sealed up before another year has passed."
While views like these are no longer part of mainstream debate, the stigma and discrimination people with schizophrenia still face can be worse than the symptoms of the illness itself. Sensationalist media reporting has helped paint a picture of "schizos" who are wild, dangerous and need to be controlled.
In truth, violence is not a symptom of schizophrenia and people who have it are far more likely to harm themselves than anybody else. The vast majority of those affected live very ordinary lives, managing their symptoms through a combination of medication and, if they're lucky, talking therapies.
While huge advances in treatment have been made since the early 1900s when "cures" included raising patients' body temperature by injecting them with sulphur and oil, things haven't progressed anywhere near as fast as they have for physical illnesses such as cancer and heart disease.
Treatment today can still be a long and draining process of trial and error to find the right medication, which can last for years. While the drugs may dull symptoms, the side effects can include rapid weight gain, heart problems, loss of sex drive and a greater risk of developing diabetes. The effects of medication, along with lifestyle factors, mean people with schizophrenia die up to 20 years earlier than the rest of us, mostly from preventable physical illness.
Too often, people with severe mental illnesses are fobbed off with drugs alone. There are plenty of other treatments proven to work, but a poll by my organisation, Rethink Mental Illness, found just 16% of people who have schizophrenia and bipolar disorder are getting access to all the treatment recommended by Nice for their diagnosis.
One of our activists, David Strange – who developed paranoid schizophrenia while completing his doctorate at Oxford – was offered nothing but medication for 10 years after first being diagnosed. When he finally made it to the top of the waiting list for cognitive behavioural therapy last year, it changed his life. He still experiences frightening auditory and visual hallucinations, but it has helped him learn to engage with them and challenge what they say.
Although the conditions found in the old "lunatic asylums" are a far cry from inpatient care today, there are some striking similarities.
In 1908, manic-depressive Clifford Beers published an account of his experiences of institutionalisation. In it he describes crowded wards staffed by staff too busy and stressed to properly communicate with patients. For many who have experienced inpatient care in 2011, his observations will be depressingly familiar.
As for the suggestion that church might be the answer to mental illness, this advice was recently given to one of our supporters by a nurse and it wasn't an isolated incident. Our members have told us countless similar stories of inconsiderate or ignorant comments. These words reveal the stigma and misunderstanding that still surrounds mental illness, sometimes even among health professionals.
To mark the unhappy 100th birthday of the term "schizophrenia", Rethink Mental illness will be launching a campaign on Tuesday asking people to send a clear message to government that people with schizophrenia deserve a better deal in every area of their lives.
Rachel Whitehead @'The Guardian'
With no known cure, you would be subjected to treatment by trial and error, some of which would have gruesome side-effects. Detained by the state, you could expect to be monitored by overworked, underpaid staff and going to church might have been suggested as a way to calm your chaotic mind.
A lot has changed in the 100 years since the term "schizophrenia" was first coined, but perhaps not quite as much as you might think. People living with schizophrenia still experience many of the same problems today.
In 1910, Winston Churchill summed up contemporary attitudes when he wrote to the prime minister, Herbert Asquith, arguing for the mass sterilisation of people with severe mental illness.
Churchill warned that the "feeble-minded and insane classes" constituted a "danger which it is impossible to exaggerate", and that "the source from which the stream of madness is fed should be cut off and sealed up before another year has passed."
While views like these are no longer part of mainstream debate, the stigma and discrimination people with schizophrenia still face can be worse than the symptoms of the illness itself. Sensationalist media reporting has helped paint a picture of "schizos" who are wild, dangerous and need to be controlled.
In truth, violence is not a symptom of schizophrenia and people who have it are far more likely to harm themselves than anybody else. The vast majority of those affected live very ordinary lives, managing their symptoms through a combination of medication and, if they're lucky, talking therapies.
While huge advances in treatment have been made since the early 1900s when "cures" included raising patients' body temperature by injecting them with sulphur and oil, things haven't progressed anywhere near as fast as they have for physical illnesses such as cancer and heart disease.
Treatment today can still be a long and draining process of trial and error to find the right medication, which can last for years. While the drugs may dull symptoms, the side effects can include rapid weight gain, heart problems, loss of sex drive and a greater risk of developing diabetes. The effects of medication, along with lifestyle factors, mean people with schizophrenia die up to 20 years earlier than the rest of us, mostly from preventable physical illness.
Too often, people with severe mental illnesses are fobbed off with drugs alone. There are plenty of other treatments proven to work, but a poll by my organisation, Rethink Mental Illness, found just 16% of people who have schizophrenia and bipolar disorder are getting access to all the treatment recommended by Nice for their diagnosis.
One of our activists, David Strange – who developed paranoid schizophrenia while completing his doctorate at Oxford – was offered nothing but medication for 10 years after first being diagnosed. When he finally made it to the top of the waiting list for cognitive behavioural therapy last year, it changed his life. He still experiences frightening auditory and visual hallucinations, but it has helped him learn to engage with them and challenge what they say.
Although the conditions found in the old "lunatic asylums" are a far cry from inpatient care today, there are some striking similarities.
In 1908, manic-depressive Clifford Beers published an account of his experiences of institutionalisation. In it he describes crowded wards staffed by staff too busy and stressed to properly communicate with patients. For many who have experienced inpatient care in 2011, his observations will be depressingly familiar.
As for the suggestion that church might be the answer to mental illness, this advice was recently given to one of our supporters by a nurse and it wasn't an isolated incident. Our members have told us countless similar stories of inconsiderate or ignorant comments. These words reveal the stigma and misunderstanding that still surrounds mental illness, sometimes even among health professionals.
To mark the unhappy 100th birthday of the term "schizophrenia", Rethink Mental illness will be launching a campaign on Tuesday asking people to send a clear message to government that people with schizophrenia deserve a better deal in every area of their lives.
Rachel Whitehead @'The Guardian'
SOPA: Hollywood Finally Gets A Chance to Break the Internet
As promised, here’s the first installment of our closer review of the massive piece of job-killing Internet regulation that is the Stop Online Piracy Act. We’ll start with how it could impact Twitter, Tumblr, and the next innovative social network, cloud computing, or web hosting service that some smart kid is designing in her garage right now.
Let’s make one thing clear from the get-go: despite all the talk about this bill being directed only toward “rogue” foreign sites, there is no question that it targets US companies as well. The bill sets up a system to punish sites allegedly “dedicated to the theft of US property.” How do you get that label? Doesn’t take much: Some portion of your site (even a single page) must
- be directed toward the US, and either
- allegedly “engage in, enable or facilitate” infringement or
- allegedly be taking or have taken steps to “avoid confirming a high probability” of infringement.
If an IP rightsholder (vaguely defined – could be Justin Bieber worried about his publicity rights) thinks you meet the criteria and that it is in some way harmed, it can send a notice claiming as much to the payment processors (Visa, Mastercard, Paypal etc.) and ad services you rely on.
Once they get it, they have 5 days to choke off your financial support. Of course, the payment processors and ad networks won’t be able to fine-tune their response so that only the allegedly infringing portion of your site is affected, which means your whole site will be under assault. And, it makes no difference that no judge has found you guilty of anything or that the DMCA safe harbors would shelter your conduct if the matter ever went to court. Indeed, services that have been specifically found legal, like Rapidshare, could be economically strangled via SOPA. You can file a counter-notice, but you’ve only got 5 days to do it (good luck getting solid legal advice in time) and the payment processors and ad networks have no obligation to respect it in any event. That’s because there are vigilante provisions that grant them immunity for choking off a site if they have a “reasonable belief” that some portion of the site enables infringement.
At a minimum, this means that any service that hosts user generated content is going to be under enormous pressure to actively monitor and filter that content. That’s a huge burden, and worse for services that are just getting started – the YouTubes of tomorrow that are generating jobs today. And no matter what they do, we’re going to see a flurry of notices anyway – as we’ve learned from the DMCA takedown process, content owners are more than happy to send bogus complaints. What happened to Wikileaks via voluntary censorship will now be systematized and streamlined – as long as someone, somewhere, thinks they’ve got an IP right that’s being harmed.
In essence, Hollywood is tired of those pesky laws that help protect innovation, economic growth, and creativity rather than outmoded business models. So they are trying to rewrite the rules, regulate the Internet, and damn the consequences for the rest of us.
Watch this space for more analysis, but don’t wait to act. This bill cannot be fixed; it must be killed. The bill’s sponsors (and their corporate backers) want to push this thing through quickly, before ordinary citizens get wind of the harm it is going to cause. If you don’t want to let big media control the future of innovation and online expression, act now, and urge everyone you know to do the same.
Corynne McSherry @'EFF'
Political Shift Seen in Rally in Pakistan
Mr. Khan assailed the leaders of both parties — President Asif Ali Zardari and Nawaz Sharif — as creatures of the status quo, and he has been a loud and frequent critic of Pakistan’s alliance with the United States, saying it was motivated by money.
The size of the crowd that Mr. Khan drew in Lahore, the provincial capital of Punjab and a traditional stronghold of the Muslim League-N, surprised his opponents and made an impression on political analysts.
Mr. Khan, 58, has languished on the political sidelines for years, and his political party, Tehreek-e-Insaf, or Justice Party, has no seats in the current Parliament. But his popularity has soared recently as voters, especially younger ones, have grown disillusioned with the establishment parties. A survey conducted by an American polling organization, the Pew Research Center, found in June that Mr. Khan had become the most popular political figure in the country.
After the crowd gave him a rousing welcome at the rally on Sunday evening, Mr. Khan threw out challenges to both Mr. Zardari and Mr. Sharif on the question of personal integrity, urging them both to disclose their assets or face civil disobedience...
Continue reading
Salman Masood @'NY Times'
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