What is Considered Appropriate in Terms of Reccomendations?

[ILADVOCATE]

I know everyone has varying opinions here and that's what makes networking important. And I know what is considered inappropriate language that will have a post deleted. But of course all viewpoints are welcome. But the difficulty is it is of course free speech in general to say a person is against all psychiatric treatment. But is it appropriate for this site? I've seen a number of posts like this from the beginning. Fortunately not too many. And also people discuss natural remedies which is fine but what if one has been shown to be harmful or useless? Anyone who discusses particular medications regardless of their inaccuracy doesn't have the last word because they can only be prescribed by a psychiatrist. But natural remedies can be bought at many stores or online. But some common ones are even used by physicians or psychiatrists. But some are clearly harmful in all regards. And if someone has entered to tell people who have a psychiatric disability, especially in times of crisis to go off all their medication, some people may follow up on that "advice" and will become psychotic and end up in the psychiatric hospital as a potential. But the people have the right to their viewpoints in general. But if someone is approaching recovery and sees this they may get the wrong idea. Discussing new and alternative treatments and warning about often undiscussed side effects is one thing. But if someone is against all psychiatric treatment, perhaps they are on the wrong site and may indeed cause harm. How do people feel about this?

[ILADVOCATE]

No one should make changes without consulting their provider. That said there's nothing wrong with saying to get a second opinion or to get a referral to a specialist, be it a mood disorders specialist or movement disorders specialist. Sometimes people notice something a particular provider may have missed. If someone has bipolar disorder and is misdiagnosed as having depression and are given an anti-depressent they will become severely manic. If they are going to a clinic where they are seen for 5 minutes and just handed a prescription they may have come in in a suicidal state and have forgotten to speak about previous manic episodes. And if their anti-depressent is making them manic they need to tell their provider that and if there is a way within their coverage limits to change providers to someone who will see them for more time and more comprehensively they should. I do believe in disclosure. That didn't happen with me in 1991. My mother was told "your son may get tremors" and with advanced tardive dyskinesia I let people know exactly what it is and what the specific rates are and that it can be masked. I was told about blood dyscreias from Clozaril and Stephen's Johnsons syndrome from Lamictal as are all consumers and I still took them. So if consumers are told about the rate of tardive dyskinesia and diabetes in current anti-psychotics they know to watch for signs of them. And for people who acquire tardive dyskinesia Clozaril is still a viable option.
   But its important to understand that in seeing the study results on the internet on glycine and the fact that its available over the shelves consumers began to self medicate. I signed onto those sites and told the consumers they had to take it under a provider's care. And it should not be available over the counter. But I have no control over that. But in my posts if people had treatment refractory schizophrenia or psychosis I told them where the website was for the official study and to bring the information to their providers. I never provided them with information on how to obtain it. Their provider makes the ultimate decision. As to whether psychiatric providers would incorporate glycine into their treatment regimen, that's a decision to made on the higher level by psychiatry in general. And one I am advocating for. I do think it my province to have people inform themselves and their providers about new medications in development. Even if just for knowledge purposes. But glycine is still an unknown quantity and I would never state otherwise. But a very promising one that will lead to far more advanced treatments.
   And consumers getting involved in advocating for new treatments to be released is part of my advocacy. And with my knowledge of benefits issues, that is volunteer and outside of clinical practice so in that one area I do consider my advice to be something people can specifically use. I work with psychiatrists and case workers who make referrals for benefits advocacy as a volunteer. And considering that I'm homebound from a physical disability, at least until neurological treatment advances but I still am involved in representing people I do want to find a way to give people the information and resources they need to be eligible for SSI or SSDI or Medicare or Medicaid. And places, such as independent living centers that can specifically help them.
    So some people have an area of knowledge that can help others. Or a specific experience. If someone was helped by a less used treatment such as ECT and someone is considering it, they should post their experiences. It does get a bit difficult when someone was helped by a particular medication and wants to reccomend it over others. But its appropriate for people to inform their providers about new treatments as they become available. I am a firm believer in "partnering on recovery". Everyone needs to take their medication but "compliance" leads to "defiance". Even the director of psychiatry where I testified said they were trying not to use the term any more. People need to know why they take their medication, why they need it, how it helps, how it should help if it isn't and what are the short term and long term side effects to watch for. An educated consumer will get the best results overall. The only "reccomendation" I cannot and will not accept is one that is all in negatives and denounces treatment in general. If a person came on to spam up a posting board with that "advice" they detract from the site. But if they are anti-psychiatry because they are paranoid or afraid of the "system" they may be irrational. But they may have had bad experiences at a particular psychiatric hospital or a particular provider and gotten a negative impression in general of psychiatry. What I do in discussing "partnering on recovery" makes them realize they can approach the system as an empowered consumer not a "patient". Their provider still makes the ultimate decisions. But they don't feel uncomfortable discussing the specifics of treatment with their provider and asking questions about it. And in the long run not only the consumer benefits but the provider as well because the consumer will tell them when they are not doing well or their medication is not working and not change it on their own. And that's why in postings I eliminate terms like "stigma", "shame", "suffering" and state "I am a person with a psychiatric disability". The consumer/provider model is a two way street. The consumer also has to treat the provider with respect if they want to be respected. But if they feel they are going to their psychiatrist to recover and when neccessary the psychiatric hospital to recover as well and have no feelings of fear, shame or guilt about what is a treatable medical condition, then they will be better off. And unlike new treatments which will take research to study, that's one "reccomendation" I would make to anyone, especially people who irrationally hate psychiatry and misuse a posting board for that reason as hatred comes from fear. And if they know they have nothing to be afraid of then they will recover more fully whatever treatment they are on.

[AR-10]

I AM listening to him.

The sort of thing he is talking about can and does happen in most forums. There are people on most boards who have no clue what they are talking about, but they are determined to spread "the truth".

Then you have the self-serving idiots that spam the whole site inviting everyone to his/her site because they have a cure for EVERYTHING.

That happened about a month ago and caused quite a headache for Medhelp staff.

I don't know the answer.

The specific scenario that ILADVOCATE describes is a bit of a Chinese puzzle. My instinct would be to ban the member after several warnings, but what if they need mental help?

I guess the bottom line is I would put a stop to it if it were harming the board, and the person would be gone, regardless if they were self-promoting or suffering from mental problems. The board is more importatant than any individual.

Just as the site is more important than any particular board.

I gave an example of something that went on on my board. Medhelp put up with complaints about this person for a long time. Her posts were deleted numerous times. She was warned by the CL several times. Now the troublesome posting is gone. But she had many opportunities to change her tone and participate.

It's not my site, so I don't have to make that call, and really have no business suggesting what I would do if it was my site.

I'm just saying, most boards have a Community Leader to turn to. Report such posts AND rebutt them.

Medhelp's response may differ from my opinion by 180 degrees.
I may not be on the same page at all.

I DO know that on my board "consult your doctor" is used a lot, for good reason, especially when someone starts telling another to up their med, or stop a med, or try over the counter stuff.

We yell about why doctors didn't run that test, or why they are not more informed, and talk nasty about them by times, but when someone starts saying "You should up your dose", or "you need to just stop your medication" a chorus of "get tests run" follows. We do not advocate or put up with someone telling another to twiddle with their medication behind the doctor's back.

Five people are posting "wait a minute!", and two people are PMing the CL or hitting the report button.

I recognize the concern ILADVOCATE has. I am not trivializing it. I'm just relating how it is handled when it is a problem on my board. Ane believe it or not, many of the people who post on my forum have mild mental issues, including me. So I understand that sometimes you have to tip-toe and watch how you phrase things carefully.

[pdr7686]

You need to listen to ILADVOCATE because he is exactly right. He knows what he is talking about. There are some people on here you can not believe what they are saying and others can prove what they say. HOORAY for ILADVOCATE

[ILADVOCATE]

  Well I agree and you made some good points. My problem is when someone's "advice" is continuely to tell everyone to go off psychiatric medications and that's the only "advice" they give. I remember a post that I flagged a while back that contained a link saying "schizophrenia does not exist". The link had no alternative treatments reccomended and it had no "proof" to back it up. The problem is if someone read it who was not doing well in the recovery process they might believe it. Of course a post like that would always be removed but if a person doesn't believe in psychiatric medication entirely and entered to tell everyone to go off medication then they are in my opinion just detracting from people's recovery. That is not to say that every psychiatric disability always requires medication. Minor anxiety disorder and obsessive compulsive disorder for example can be helped by behavioral therapy. And everyone seeing a psychiatrist should see a talk therapist as well but I'd say psychiatrists would agree with that. As to who could be helped from talk therapy alone, that's a very individual decision. I would say for certain, no one with schizophrenia and saying any mental illness "does not exist" takes away the whole idea of recovery.
   I can say that it has made my advocacy in the outside, where their ideologies are free speech that much harder. "Tardive psychosis" is still not a medical criteria but I'm being considered for it in a study. But if you call up the term online along with studies that were researching it and potential treatments, you will find many anti-psychiatry sites that misuse it to tell people to go off medication entirely. They would most likely want to join a medical forum to tell people their "mission" which is not just "anti-psychiatry" its against recovery in general. I've posted on their sites about new treatments in development such as the glutamate antagonists, which as I've mentioned in my posts are a class of medication in FDA study that will not create tardive dyskenesia or diabetes. I know the study medication I am on glycine, is a compound and they are studying medications that target glutamate receptors that are more effacacious. I know in the studies that glycine has shown no harmful side effects. But I can't promise that in the long run it will declared "safe and effective". It has to get through Phase II studies into Phase III and then declare a new drug application and then be approved. And most likely it will be among other new glutamate antagonists they are studying as they are not a powdered compound but a titrated pill. And some do look promising. As well as other new study classes of anti-psychotics.
  The information I post could be classed as "new to medical science". Its up to the researchers to finalize the studies and glycine has been in use since 2003. "Tardive psychosis" has been studied as a criteria since 1978 but with no conclusive results. If the researchers confirm I have it, it will take large studies before its proven. However, in standard medical model terms, I was able to find out about Zofran here and its been helpful in mitigating that. But before I post new information I confirm it with my provider and I do have him check through my entries from time to time. But not once have I said for people to change anything without consulting their psychiatrist first. The only change I have reccomended is to see a psychopharmocologist or mood disorders specialist if nothing else has worked out. Or to see a neurologist who is a movement disorders specialist if they are saying they have what might be tardive dyskinesia. But psychiatrists in standard clinical practice do refer people to specialists the same way a dentist would refer someone to a periodontist or orthodontist.
   Natural remedies are a complex arena because they are under regulated although some are effective. But they should always be given under the supervision of a doctor or psychiatrist. And of course in not being regulated they are an unknown quantity and natural doesn't always mean "safe". I learned that the hard way from getting kidney stones from using cranberry pills as a diuretic. But the saw palmetto I take for prostatitis is given under the direction of a urologist and most will authorize taking this and mine suggested it. The problem is when someone believes "mental illness does not exist" and has entered the site to "warn" people about psychiatry. What do we do then? It may be that they themselves need help and they believe this because its a delusion because they are not doing well or not on medication themselves. I myself in 1993 was misled by an anti-psychiatry group into going off medication and I ended up the psych. hospital. If someone's whole posting history is to tell people to go off medication what happens then? Perhaps it means they really need help and are delusional. Or perhaps they've entered the site to manipulate people for their political agenda. The question if they are against the practice of psychiatry and medication as a whole do they belong here? Or should they keep their political agenda on a site that promotes that viewpoint and stop undercutting people's recovery? And genuine mental health consumer advocacy which is pro-treatment as well?

[AR-10]

That's one reason there are disclaimers on every page saying members are offering personal opinions only, and a doctor should be consulted before taking any advice given by members of this site.

My feeling on it is this; most of the advice offered is good. Some of it is not. Most of the time, but not always, other members with better advice will speak up.

Some bad advice will be heeded. That is unavoidable. The only way to keep that to a minimum is to offer better advice, and back it up with medical links.

If someone is constantly offering the same bad advice over and over, a CL or moderator should step in and take care of it, especially if it is harmful.

We had someone trying to rip a forum in half because she was opinionated, vocal, and endlessly annoying. She was given several warnings. She is not posting these days.

If harmful things are being posted, report them.
Also, post a rebuttal offering better advice.