2 very important YouTube videos on PSSD and the RxISK prize

[Vanora]

Please promote these videos to the media, doctors and pharmacists, anyone in healthcare, and the wider public. Thank you.

 

  

[JanCarol]

I'm a little angry about this. It seems disingenuous to pick the HARDEST symptom to heal from and offer a cash prize to whoever "solves" it.  

 

Likely it will not be ONE solution but a million solutions.

 

It would feel more authentic to me if he offered the cash prize to someone (like AltoStrata) who has a successful tapering protocol.  This will help millions.  And will probably help the PSSD people too, somewhat.

[Vanora]

Hi JanCarol,

 

I appreciate your feelings. David Healy explains in the RxISK prize video that the hope is that by solving the issue of PSSD we can solve other issues such as antidepressant withdrawal and indeed the problems of other drug groups like the benzodiazepines that bear many similarities. Whether you agree or disagree with the focus of David Healy's campaign I can tell you that trying to capture the media's attention over this is a tough nut to crack. For every excellent article pointing to the harms of these drugs there is many more about the perceived mental health epidemic hitting the UK at the moment and you can almost guarantee to have someone come along from the Royal College of Psychiatrists suggesting we are under treating rather than over treating patients and that antidepressants save people from suicide. The resistance from some in biological psychiatry is pretty strong and unfortunately many of the public have bought into their message. Over 60 years later the victims of the benzodiazepine scandal are still waiting to receive justice over injudicious prescribing. I hope and pray we will not wait a further generation for things to change over the prescribing of antidepressants.

 

I see you were prescribed these drugs for 30 years JanCarol - me too. It's been quite a journey. And now you are psych drug free, congratulations and I hope you are doing well. My best wishes to you. Vanora   

[Shep]

36 minutes ago, Vanora said:

David Healy explains in the RxISK prize video that the hope is that by solving the issue of PSSD we can solve other issues such as antidepressant withdrawal and indeed the problems of other drug groups like the benzodiazepines that bear many similarities. Whether you agree or disagree with the focus of David Healy's campaign I can tell you that trying to capture the media's attention over this is a tough nut to crack. For every excellent article pointing to the harms of these drugs there is many more about the perceived mental health epidemic hitting the UK at the moment and you can almost guarantee to have someone come along from the Royal College of Psychiatrists suggesting we are under treating rather than over treating patients and that antidepressants save people from suicide.

 

This is interesting, Vanora. I get the strong vibe that this is more about a "marketing strategy" than a "medical strategy" because the medical strategies simply aren't working. 

 

And in a way, the prize will likely be overshadowed by the fact that if you put the word out that ADs make you impotent, a lot of young people won't touch them, especially young men who are at highest risk for turning violent in SSRIs and doing these mass shootings (at least here in the US where guns are everywhere). 

 

But if you deal with bigger issues such as the connection to Alzheimer's and other related problems, young people think of this as so far in the future that it won't effect them or that there will be a cure by that time. 

 

And simply put, sex sells, so "marketing" this in that venue may do more than sticking to other less sensational subjects. 

 

For me, I view the cognitive problems as being much more of an issue and like JanCarol mentioned, would think that tapering plans and strategies would be more appropriate to focus on. 

 

But it's interesting viewing this as "marketing" and seeing what it might accomplish in terms of public relations and the message being able to outshout the biomedical psychiatrists. I wonder how much prevention this is about (i.e. alerting them to the danger), as opposed to really finding a cure. 

 

Just my own take on it, though. 

[Vanora]

1 hour ago, Shep said:

 

This is interesting, Vanora. I get the strong vibe that this is more about a "marketing strategy" than a "medical strategy" because the medical strategies simply aren't working. 

 

And in a way, the prize will likely be overshadowed by the fact that if you put the word out that ADs make you impotent, a lot of young people won't touch them, especially young men who are at highest risk for turning violent in SSRIs and doing these mass shootings (at least here in the US where guns are everywhere). 

 

But if you deal with bigger issues such as the connection to Alzheimer's and other related problems, young people think of this as so far in the future that it won't effect them or that there will be a cure by that time. 

 

And simply put, sex sells, so "marketing" this in that venue may do more than sticking to other less sensational subjects. 

 

For me, I view the cognitive problems as being much more of an issue and like JanCarol mentioned, would think that tapering plans and strategies would be more appropriate to focus on. 

 

But it's interesting viewing this as "marketing" and seeing what it might accomplish in terms of public relations and the message being able to outshout the biomedical psychiatrists. I wonder how much prevention this is about (i.e. alerting them to the danger), as opposed to really finding a cure. 

 

Just my own take on it, though. 

 

Hi Shep,

 

I must say that I am sceptical that David Healy is using PSSD and the RxISK prize as a marketing strategy but that said it can hardly be a good selling point if your product renders consumers impotent and if more people knew about it I'm sure AD prescribing wouldn't be quite so robust. At the present time I believe that the RxISK prize is going virtually unnoticed by the majority of the general public, no one thus far has covered it in the main stream media although there have been some sparse newspaper articles on PSSD. As someone who is part of a campaign group trying to get the message out about AD and benzo harms I welcome anything that raises these issues. 

 

The biomedical model of psychiatry still dominates much of what is written about mental health in my part of the world as it is in yours. IMHO psychiatry cannot be unaware of the prescribed drug harms but you could say they are prepared to write this off as "collateral damage". There are too many vested interests at stake to change this paradigm of care. Interestingly, Carmine Pariente from the Royal College of Psychiatry recently said this in a twitter exchange after a Panorama documentary about homicides linked to AD use; "...the old idea that ADs correct a chemical imbalance in the brain is an over-simplification and we do not support this view". I think this is quite a significant admission given they have been quite prepared to leave this myth go unchallenged these many years. In terms of public relations any time anyone dares to raise the question about AD efficacy and risks people come out of the woodwork to suggest we are stigmatising those with mental health problems. The Science Media Centre (check out David Healy's views on the SMC) who have received funding in the past from GSK and AstraZeneca are very good at this kind of practice. You can understand that we really are up against it.

 

Yes, I agree I wish we were highlighting cognitive problems, AD withdrawal and tapering plans but it isn't me that sets the agenda unfortunately. It's a frustrating business! 

[Shep]

Vanora, thanks for continuing to post on this thread and give us more information and explanations. I have to admit with all of the harm these drugs cause, I am a bit confused about focusing on this one symptom. But in my wonderings and speculations,  I certainly didn't mean any disrespect against Dr. David Healy and his medical wisdom. He is no doubt a major advocate for his patients and others who have been harmed by these drugs, so I have much respect for him and his work. 

 

I will have a look at the SMC info on Dr. Healy's blog. You are right, "it's a frustrating business!" 

[Vanora]

No problems Shep, I didn't think for one moment you were disrespecting Dr David Healy and I very much welcome your interest. Here is the link to David Healy's blog piece on the Science Media Centre - https://davidhealy.org/from-the-grassy-knoll/  Take care.

[nz11]

Thanks for posting vanora

I admire the work Healy is doing and so much want him to find a cure for pssd. sadly I don't have a lot of hope.

 

Healy already refers people to this site for tapering help.

I  think it is great that he has pssd at the centre of attention. 

Interestingly in one of the vids he says they are 'close to a cure' ......

I wish Healy and the team every success.

[Vanora]

I have to take David Healy at his word and hope that he is correct that we are close to a cure nz, if only we could get some much needed publicity. I think your 2015 quote from Healy is quite mind boggling by the way. There doesn't appear to be any end in sight to this world wide iatrogenic pandemic, it makes me just that bit more pessimistic.    

[Vanora]

On ‎08‎/‎11‎/‎2017 at 2:36 PM, Shep said:

 

This is interesting, Vanora. I get the strong vibe that this is more about a "marketing strategy" than a "medical strategy" because the medical strategies simply aren't working. 

 

And in a way, the prize will likely be overshadowed by the fact that if you put the word out that ADs make you impotent, a lot of young people won't touch them, especially young men who are at highest risk for turning violent in SSRIs and doing these mass shootings (at least here in the US where guns are everywhere). 

 

But if you deal with bigger issues such as the connection to Alzheimer's and other related problems, young people think of this as so far in the future that it won't effect them or that there will be a cure by that time. 

 

And simply put, sex sells, so "marketing" this in that venue may do more than sticking to other less sensational subjects. 

 

For me, I view the cognitive problems as being much more of an issue and like JanCarol mentioned, would think that tapering plans and strategies would be more appropriate to focus on. 

 

But it's interesting viewing this as "marketing" and seeing what it might accomplish in terms of public relations and the message being able to outshout the biomedical psychiatrists. I wonder how much prevention this is about (i.e. alerting them to the danger), as opposed to really finding a cure. 

 

Just my own take on it, though. 

Shep,

I hope you find this response because I owe you an apology, it turns out that David Healy is of a mind to highlight the wider issues as the RxISK prize  "is part of a two-pronged attack on the unwillingness of the medical and regulatory establishments to listen to people with adverse events in general - not just the sexual dysfunction". I should have looked a bit more closely at all the literature. Still, it would be great if he is close to a cure for PSSD.     Vanora

[nz11]

If Healy is 'close to a cure' what do you think that cure will be?

Let me guess ..a chemical that has to be swallowed. And if so for how long ...for life? And what of side effects?

Forget it because I am not swallowing anything from a doctor ever again, period. 

 

[Shep]

12 hours ago, Vanora said:

Shep,

I hope you find this response because I owe you an apology, it turns out that David Healy is of a mind to highlight the wider issues as the RxISK prize  "is part of a two-pronged attack on the unwillingness of the medical and regulatory establishments to listen to people with adverse events in general - not just the sexual dysfunction". I should have looked a bit more closely at all the literature. Still, it would be great if he is close to a cure for PSSD.     Vanora

 

Hi, Vanora.

 

Please don't think you owe me an apology. You do a great job of bringing these types of research projects to the forum and then staying active in the thread for discussions and follow up information. Thank you for this information.  I look forward to learning more about the second part of his "two-pronged attack" as the information becomes available. 

[Vanora]

8 hours ago, nz11 said:

If Healy is 'close to a cure' what do you think that cure will be?

Let me guess ..a chemical that has to be swallowed. And if so for how long ...for life? And what of side effects?

Forget it because I am not swallowing anything from a doctor ever again, period. 

 

 

It's a dilemma for sure nz. I've come across the victims of PSSD. These men, and it's only men I've met so far with this condition but I know that women also suffer from this, are quite frankly devastated. It's so cruel that we are part of vast community of people whose drug induced harms are largely denied by the medical establishment. A recent letter I saw from a GP in a well known medical journal said and I quote, "No GP ever force-fed medication to any of those individuals who now claim to be addicted to prescribed drugs. Perhaps the first step on their recovery would be to accept personal responsibility for their own health seeking and drug taking behaviour". It got some of us hopping mad!! Among the people I know our first mistake was to take on trust that the drugs we were prescribed were safe and not dependence forming. Pills are too easily promoted as a cure for every ill. We've done our best to respond and set him straight but unfortunately this kind of insensitive arrogance is not unknown amongst GPs.

 

Back to your wider point about trusting prescription drugs. I wouldn't swallow just anything from a doctor either. For some time now I've had one uti after uti. No alternative treatment has helped and I've been forced to go to my doctor for antibiotics. I'm not very happy about this as I don't do well on meds or supplements these days. Sometimes your options aren't too brilliant and that I think is the position of PSSD sufferers. I'm going to post a link which is graphically illustrative of the severe problems of PSSD. Please be warned that it does go into embarrassing detail. I don't know what happened to this young man as this was reposted by someone else but it does make me feel incredibly sad and more than a bit angry.  

  

 

[Vanora]

5 hours ago, Shep said:

 

Hi, Vanora.

 

Please don't think you owe me an apology. You do a great job of bringing these types of research projects to the forum and then staying active in the thread for discussions and follow up information. Thank you for this information.  I look forward to learning more about the second part of his "two-pronged attack" as the information becomes available. 

 

Thank you Shep, you are too kind.

[nz11]

Hey Vanora just wanted to say thanks for all you are doing...esp with all the petitions etc.

Don't know who you are in real life but I thank you.

nz11

ps I'm sorry but I unable to  listen to that above vid ....it will only upset me. 

[Vanora]

23 hours ago, nz11 said:

Hey Vanora just wanted to say thanks for all you are doing...esp with all the petitions etc.

Don't know who you are in real life but I thank you.

nz11

ps I'm sorry but I unable to  listen to that above vid ....it will only upset me. 

 

Nice of you to say so nz, I'm just one person among many trying to campaign against the harms of antidepressants and benzodiazepines, being part of a collective effort makes the difference. It's a sorry thing to say but there is no shortage of victims to join the cause.    

[Spruce30]

I have PSSD and have suffered terribly because of it. If people can spread these videos and raise awareness I will be very grateful. I want so desperately to recover. I just want to feel normal again.

[Vanora]

7 hours ago, Spruce30 said:

I have PSSD and have suffered terribly because of it. If people can spread these videos and raise awareness I will be very grateful. I want so desperately to recover. I just want to feel normal again.

 

I feel so sorry for your situation Spruce, you place your trust in the advice of your doctor and the result is possible long-term damage. It's so unjust. I hope something good comes of the RxISK prize especially for people like you. Best wishes.  Vanora