Nearly a week ago a group of Italians sent this post written after one of their number gave up his struggle with PSSD and the system. We’ve been very slow posting it – partly because of the emotions it stirs. Its quiet beginning and contained fury at the end conjured up Marc Antony’s speech after Caesar’s assassination.
I Come to Bury Marchino
Little more than a week has passed since your last breath and only a few more days since your intentions to set up an association for people harmed by so-called serotonergic drugs. It had taken you some time, with obstinacy and patience, to gain a little trust from some important people close to you and to be believed; not the doctors to whom you turned and from whom you obtained, unfortunately predictably, the kind of hasty and unacceptable response that we all still receive most of the time.
This was despite the fact that your post-SSRI syndrome was not limited to the severe sexual dysfunction, terrible emotional numbness, anhedonia and cognitive problems it brought on. The antidepressant drug you were prescribed for a moment of despondency, after its discontinuation had a devastating impact on your health and fitness.
You had lost muscle mass at a frightening rate, your skin had changed, aged in a short space of time; you had pain and creaking joints. You had metabolic problems, you said it was as if your body was assimilating everything you took in without being able to expel it. You didn’t know what you could do to stop this dreadful degeneration of your organism; and neither did we. Nobody knows.
There are people among us who are sustaining very similar conditions of the post-SSRI syndrome. Damaged by those ‘well-tolerated’ antidepressant drugs that were supposed to help them and improve their living conditions, they find themselves, moreover, without valid medical support and, as a consequence, often not even believed by their families; ‘all psychological’, or ‘depression’ are the predictable, as well as inadequate, interpretations and answers we receive and which have the effect of further inflicting denial on our evidence, leaving us in the dismay of discovering ourselves victims of something that is not yet recognized for what it is.
Those who met you, about a month ago, saw with their own eyes your ruined body and skin; from your words, suicide was not contemplated; you would have wanted to go to a research center dealing with PSSD to be a ‘guinea pig’. You would have liked to create an association, once and for all, so as not to leave people like you in this extreme situation abandoned. You would have liked to be able to give them, as well as yourself, a valid support, some answer.
An answer that is not here now. Together we could have sought it, waited for it, or imagined it already on the horizon as a refraction of our hope. But mirages can be tremendously fragile. A local newspaper reported your death as that of a man who had ‘long suffered from depression’. Predictable. Anyone who dies as a direct or indirect consequence of iatrogenic syndromes caused by psychotropic drugs will have suffered the damage, the mockery and the burial of the truth along with his body.
It is a surreal situation this ‘invisibility’ of the damage, this apparent impossibility of demonstrating to the whole world something true, real and very serious, a criminal injustice that has struck and will continue to strike innocent people who trusted and entrusted themselves to a health system, in silence, amidst the tranquility of doctors, pharmaceutical companies and health institutions.
Cry Havoc and Let Slip the Dogs of War
Its the truth that Marchino’s death will be dismissed with a facile lie – it was his depression – that is the bitterest cut. Its this that prompts a Cry Havoc and Let Slip the Dogs of War moment.
Someone else who regularly keeps us updated on her efforts to get regulators to acknowledge the risks linked to doxycycline – an honourable drug but one that can cause suicide, dependence and sexual dysfunction – got in touch after her latest exchange with regulators (Britain’s MHRA).
She is baffled at how they cannot see the obvious role it plays in cases like Amanda Cutland in triggering a suicide or other tragic event – even when a coroner writes to them and indicates there is no other way to explain what happened – See Doxycycline.
Like the person in the Bible who bombards Heaven she finally got them to slip – and a response intimated that they knew Doxycycline could do these things but they didn’t want to alarm all those on treatment by issuing a warning.
This is a Get-Out-of-Jail-Free card in the sense that it shuts down a lot of conversations. There is a twist though. Imagine saying this about smoking – we don’t want to alarm people by issuing a warning. Everybody would be furious until they remembered, regulators know how to issue warnings that will increase sales of cigarettes and sales of SSRIs to children.
It took a bunch of consumers in California to say enough is enough – no-one can smoke in this restaurant to make a difference.
We need something like this now – except we don’t want to stop people who are going to benefit from having doxycycline or SSRIs. Or Vaccinations.
Peter Doshi has chronicled exactly the same regulatory behaviour vis-a-vis vaccines – regulators are sitting on thousands of deaths but it could be millions for all the difference it would make. They never make a link between a treatment and a problem – unless companies let them. (The vaccines causing clots spun out of their control and the link has grudgingly been put on the radar).
We need some smart people to come up a Californian solution. Fantasising about having a bunch of Rabid Dogs of War running loose causing Havoc in Regulatory Departments is a pleasant balm for agitation but something clever is needed – something that breaks through the veneer,
In the meantime, while regulators keep spouting lies about us – it was likely Marchino’s depression – the only option is to keep telling the truth about them – they are more interested in the health of pharmaceutical company products than in our health or that of our children or parents.
Friends and Fellow Inhabitants of the Globe, lend me your ears….
susanne says
Sadly yet another tragedy is heartbreaking but not shocking. Regulators are careful to respond in the gentile veneer which hides their true colours but is worse than a contemptuous spit in the face They have the power to scew the truth churning out the same deceit decade after decade including by using the media When journalist such as The Herald in Scotland are taught that it is good practice to get a ‘balanced’ view spokespeople from medical colleges paradoxically are able to undermine the truth with the same lies and obfication decade after decade – The Herald has been flagging up concerns about anti depressants since 2013 including about suicide https://www.heraldscotland.com/news/16285833.antidepressants-found-drug-death-post-mortems-methadone-amid-record-fatal-overdoses-scotland/
People feel betrayed by medicine when all avenues of help close up in defence of what has obviously caused harm ,the final cry when yet another denies what they often must know is the truth, is more an e tu Brutus. What a terrible way to die. ( the youngsters who are next in line for the vaccines in UK are only now being warned by the contemptible MHRA that they are at risk of blood clots – they are the group who will most want to go out and meet up with new friends and potential partners – they are being labelled as potentially in need of mental health serices after horrors of covid ease up – let’s hope they will get properly informed about prescription drugs.
Sufferer says
I think its not ok to go only behind the back of regulators. Let’s be brutally honest : the prescribers of these chemicals could stop this whole show if they only wanted to do it and had the true backbone for it. Would it stop psychiatry as it is now? Yes it would but that’s exactly what we need, no talking around the point. Every doctor that knows the risk here vs. the poor and unpredictable benefit should simply stop letting anyone take the risk – because they could.
Dr. David Healy says
This is not the case. For some people the drugs can help a lot. The RCTs are just a mechanism to get them on the market and give little indication of what happens on treatment. A person going on treatment needs to know the risks but even knowing this risk the seduction of going on the drug may be hard to resist. The key thing is when on treatment am i getting a benefit – if there is a very clear benefit then people might decide to continue with the risk. But if there is no hint of a benefit and clear hints of a problem, this is when getting people off quickly could make a big difference and where the warnings may have an effect – but it depends on people listening to each other and having a relationship. The idea of dishing out a poison where there isn’t a decent relationship between the poisoner and poisoned is a recipe for disaster.
D
Spruce says
Is there not an argument though, that with psychiatric drugs, and especially SSRI’s; that until the risks are fully transparent, and “all of the cards are on the table”; then by default, the risks of prescribing, should automatically outweigh the potential benefits; because the prescriber does not know of the full risks, and is therefore not in a position to make an informed decision; about whether the benefits could outweigh the risks?
Therefore I think until doctors have access to all the data/facts, on the true risk to benefit ratio, and are not in the dark about them; there is an argument they should refuse to prescribe them; apart from perhaps in certain severe cases of depression, that seem particularly resistant to non pharmacological treatments, or which doesn’t resolve on its own, over time ( as a lot of cases of depression eventually resolve on their own, even without any form of treatment).
Dr. David Healy says
Spruce
I mostly agree with this. If doctors insisted on access to trial data and if they refused to prescribe without both them and you and the rest of us able to see this data in full – and this means if need be being able to interview some of the people who were in the clinical trials – we would all be in a better position.
In the absence of this, there is a real onus on docs to say to patients this is a poison and both you and I need to keep a hawk eye on what is going on and if you aren’t getting much benefit and definitely if there are harms we need to stop it asap. But this is something else doctors are failing badly at.
Would we be better placed if these were all over the counter drugs?
D
Sufferer says
Sorry but this is once again an answer dodging the point. The fact is : many of the adverse cases are abrupt and there is no way predicting and avoiding unless you simply don’t eat these pills. The only way to achieve this is that they are not prescribed, because the risks are known . Period. Everything else is bla bla bla and beating the bullet because psychiatry does not have the backbone to stop this all.
Dr. David Healy says
Its not dodging the point. I agree this approach won’t solve all cases. But at present most docs don’t believe these drugs cause sexual dysfunction or dependence or suicide or any other problems – so your first problem is to persuade them or you have no hope of getting anywhere.
Your second problem is persuading all the people who want their acne cleared up (and their dermatologists who don’t think..) or the young men distraught at their hair loss (no one believes finasteride causes problems…) and the people who want an SSRI who have heard about all the amazing things that SSRIs can do for them not to ask for them. As things stand if people ask for accutane or finasteride or SSRIs and I say no you don’t really want them – I get fired.
The only people who can change this are the pharmaceutical industry who when they spot a way to make money out of something else will persuade you and your doctor that SSRIs are not the right thing to do.
If you think psychiatrists can make a difference to this or family doctors who do most of the SSRI prescribing, emotionally semi-correct though your view is, you are part of the problem rather than part of any solution.
DH
Sufferer says
Defence defence….
I am talking of all doctors across the board should have enough backbone to simply not prescribe these things. Doctor getting fired is the problem? Then that segment of medicine is useless and harmful and living from it as a profession is not justified anyway. Family doctors have much more to do than psychiatric meds, accutane and finasteride. Drug industry the only culprit? Nobody forces a high moral doctor to prescribe anything. You make me a part of the problem? I think you are, and all you do is defend your position because you as one are not man enough to start really doing a practical paradigm shift here. Dont just talk and blame all the other instances. Be a man and show the way to other doctors on how to start finally running down this madness. Your repeating excuse of “because the patients want it” is total dodging of responsibility. You know what can happen and you have the means to change this. Don’t ride on multiple horses. It’s really something that eats the credibility. Be a man like Breggin and act up to what you talk. Nothing will change enough otherwise.
Dr. David Healy says
You could start by having the courage not to be anonymous. If you were not anonymous and a doctor and refused to give people SSRIs or ADHD meds or Medically Assisted Dying, or terminations of pregnancy or gender reassignment here in Canada you’d be fired and told by the Supreme Court that if you won’t do these things or refer people on doctors who will you should not be medicine.
Having been fired twice and referred to disciplinary bodies on many occasion for taking the positions you seem to want doctors to take I can tell you the horse has bolted on this one. Whatever chance doctors had of doing this once when they exerted some real power, that moment has passed. Doctors may well pay for it when people start asking why should be pay these guys so much money – for what – what do we get from it.
But if you weren’t anonymous and were to say this in front of a bunch of people interested to get treatments, you’d be torn limb from limb. You can say things like this in an echo chamber that is getting smaller and smaller and less and less influential the whole time and if that gives you a warm glow good luck to you
DH
Vee says
Here here …
Poisoning by the poisoner without a healthy benefit to the poisoned is a criminal act …
Legislation must be put in place to give the poisoned recourse from the poisoner … although no doubt it would be set up to protect the poisoner!
Neither prosecution nor defence can definitively prove cause correlation effect beyond a reasonable doubt.
Hail big pharma and associates
susanne says
Practically speaking is there a kind of data base which could provide doctors and individuals with the information needed for all permutations of harms versus benefits of each different eg anti depressant ,for each individual. One person has a different physiology from another; and/or a different profile of symptoms which would react differently to a specific drug from somebody else. It seems the data can still only ,however important it is that it should be available to everybody, be a guide .If there was an imperative for one named medic only to be responsible for prescribing to an individual there would be an opportunity for carefull watching and monitoring – and create research in action rather than rely only on trials data . (The push from NHS is for more tele medicine , GPs are presently being told to provide more video and phone consultations which cannot offer the same sort of nuanced discussion and investigation as face to face .just as being bounced around from one medic to another cannot provide proper careful/care.) If the trial data was available , as it should be ,would it though get watered down or dumbed down and possibly corrupted by a claim of making it more accessible In the same way as adverse effects are put into categories ,in scales of seriousness. Someone told there is only a 1 in 1500 likelihood of a serious adverse effect can understand that as a risk worth taking or another would say no thanks. The data can only provide a guide which is relevantly useless unless warnings to be watchful are given by prescribers and they carry out all the tests for symptoms indicated as being caused by a drug – and which cause a deterioration in physical health . I n short if people wish to become prescribers their practice needs to be a much tighter , more skilful and responsible practice -not left to doctors who are practicing in an amateur way relying on guidelines but without enough real knowledge of what they are handling.. As much as I think we should have the right to Acess data bases I cynically believe it will only have limited benefits unless the way prescribers, practice changes..and would they want to share that control openly with everyone..
Dr. David Healy says
Why do we need a database like this? Why not just trust people – believe what they say – make it possible for them to say things they are currently scared to tell us?
Why are we treated like Nora in the Doll’s House?
D
susanne says
I i think we need it to have some level of protection against lack of info to make as much as possible informed decisions and that all health workers are not knowledgeable enough without some reference materials – wjhich i guess needn’t be just on data bases.
vee says
We all know that RCT statistics data databases are only as good as the the information used and put into them! In other words, everything can be manipulated, without creating an obvious bias.
Doctors, physicians, counsellors, therapists, specialists, experts, researchers, all run on KPIs (time effort funding burden) either the companies or their own.
And like DH mentioned, Big Brother is watching … better to be in some sort of paid employment than in a gutter somewhere
Larry says
RIP Marchino!
I long for the day when the world finally acknowledges the existence of conditions caused and/or created by psychotropic drugs. Unfortunately for us, the “chemical imbalance” story concocted by the boys in marketing has been repeated so many darn times since the 80’s, the global consciousness has largely eaten it up as true already and wouldn’t dare question the firmly cemented “scientific” orthodoxy.
It is so sad and frustrating. I don’t deny some of these drugs may be able to help certain folks in perhaps more extreme situations, however, it has been shown that the nature of SSRI drugs are even more addictive and more difficult to get off of than heroin, cigarettes, or any other hard drug for that matter. When were any of us told about this? Never…
susanne says
These very (self )important GPs are more keen to throw as many as possible Out of the dolls house Here is a prime example if anyone has the stamina to read it, of what it is like to try to have a real discussion with still too many opinionated doctors who still believe they should not be disagreed with – honestly- scroll down- I think this lot should self refer to Clare Gerada’s Distressed doctors service Their own servce is so fragmented it is hardly likely they will have an actual encounter with most registered with them or therefore understand the problems real people are experiencing The tone is frankly quite nasty , they talk at and about people rather than with them I wouldn’t trust my own healthcare to a group which sends such a letter out of the blue to people registered with them.
https://www.pulsetoday.co.uk/views/in-full-gp-practices-16-page-letter-to-patientsre GP practice, Ivy Grove Surgery, has penned an open letter to patients explaining how demand for services has doubled in recent months as services have been This site is intended for health professionals only
GP practice’s 16-page letter to patients
In full: GP practice’s 16-page letter to patients
GP workload
30 April 2021
A Derbyshire GP practice, Ivy Grove Surgery, has penned an open letter to patients explaining how demand for services has doubled in recent months as services have been used inappropriately. The full letter is as follows:
April 26, 2021
AN OPEN LETTER TO OUR PATIENTS ABOUT DEMAND
April 26, 2021
mary H says
You know the saying – ‘we are given two ears but only one mouth, for a purpose’, meaning that LISTENING is twice as important as SPEAKING! How often is this true? In the medical world and especially in mental health terms, it seems that “speaking” is the role for the professional and “listening” is the only option for the patient. This HAS TO STOP. It will only stop if we, patients and their families, REFUSE to let it carry on. It seems as if doctors, when faced with pharma reps., take on the ‘listener’ role and let the reps. give them all sorts of information but never the full story. If we started to question a prescription given to us, started to phone in with any side-effects that we encounter and refuse to continue to take their magic, ‘happy pills’ and, in the meantime, keep notes of everything that we’ve noticed and shared, then many doctors might begin to wonder what is going wrong.
Whilst so many of us accept whatever is recommended for us to take, continue to take it however it makes us feel, take monthly trips to our pharmacies for our repeated supplies – why should our doctors change their ways? If we make life so comfortable for them that they can simply press a button to supply us with whatever they please, is it really any wonder that we are in this mess?
For those who are already in that vicious circle of ‘repeat the dose, increase the dose, change the meds – repeat as necessary’ it is too much to ask. Their needs are way beyond the expectations mentioned above. The rest of us, apparently queuing up for “support” due to lockdown restrictions etc., are the ones who can push for these changes. We can speak up for family members who are already in the hamster wheel – easier said than done, I know, but it is possible to get an outcome to change the speed of the turning wheel even if not to get the patient completely out of it. It takes guts and a resolve to continue pushing forwards but is well worth the effort when you see your family member’s life improving at last.
We cannot stand by and expect someone else somewhere to wave a magic wand that will change the picture – we are part of it and have to make a stand against the situations that disturb us. Nothing will change whilst we sit back and let it continue.
Dr. David Healy says
Mary
It sounds like we should protest against doctor-splaining. Something about the comment you’ve written, maybe combined with the mood I’m in left me hearing man-splaining. You know – men the creatures who have very active mouths but no ears.
Of course its women’s love of men as boys – giving them space to talk and building confidence in them by treating everything they say as wonderful that perhaps helps create the problem – so it will need women more than anyone to think about how to makes sure that brittle male confidence isn’t crushed completely while they are learning to listen. See the post on DH.org today.
The idea that a clinical encounter should involved anything less than 90% listening by a medic is weird – there are quotes going back over a century like ‘listen to your patients they are telling you the problem’.
David
Larry says
What compounds this, I believe, is the air of the medical profession itself and how the title of “Doctor” in the Western world has now become associated with status and prestige. Was it always like this?
Example as a type of attitude: “I studied over 10 years to get where I’m at, I know better than you.”
Nothing can be more harmful, in medicine or in any other field in life. This kind of closed-mindedness prevents the kind of meaningful discourse many patients are longing to have with their doctors.
susanne says
I’d like to see a video made of a ‘good’ consultation. Not the sort medical students are engaged in , or just more lectures but by a qualified GP and by a psychiatrist with a real person with a real current problem in real time without any props or rehearsing..That could be useful in boosting confidence to people before going in to a meeting – the make a check list advice may be useful but a conversation brings out a lot more and it would benefit practitioners who aren’t taught how to treat individuals with guenuine respect on an equal basis of exchanging knowlege learned and knowledge gained from real experience to come to a way forward .They end up just repeating and teaching formulaic disempowering and unhelpful consultations a lot of the time
Larry says
I agree with this. It could shake things up a bit and provide for some meaningful insight.
I’m not entirely sure if primary doctors or any other physicians have to take courses in their studies that involve the empathetic care of other human beings- I don’t know what else to call. Just plain, simple, human to human interaction.
It’s not to say doctors don’t care, but so many of them become jaded because of the system and also even as a defense mechanism… if they emotionally invested in each and every patient, they wouldn’t be able to do their job. Or would they?
Justin Oxley says
This all needs a television documentary I think. I can see how I would edit it and put the pieces together to get the message across clearly. I don’t know why popular channels wouldn’t broadcast one. Has the documentary Medicating Normal been on popular channels ? I have no idea I don’t watch television. I see there is this Crime of the Century one coming down the pipeline soon. We want something like this to get doctors to start asking questions and raise the bar for ssri prescriptions, encouraging some herbal anxiolytics rather than ssris all the time might be wise.
https://youtu.be/SkU75sBdjdU
Sufferer says
Medicating normal is ok but to be honest : it pretty much leaves the picture that everyone heals slowly and withdrawal is the biggest problem. That’s not good, cases of permanent harm should be presented, cases leading to suicide like this one. Sexual dysfunction is not even present in the movie. I think it missed a good chance to be rough as reality is. Too bad. It seems to be made with the Alto Strata attitude : “everone recovers” – which is far from the truth. It’s false hope.
Justin Oxley says
I watch the Professor Simon channel sometimes as he makes some very good quality Science/History videos. I like his style he has set himself up to generate his own electricity using a waterwheel next to his house with battery storage. I like the idea of doing things myself and being as self reliant as possible, not being beholden to anyone would be nice. Professor Simon probably wouldn’t dare do a series of videos on ssris as his channel would be sunk forever. His series on the Boeing 737 Max 8 is very good.
https://youtube.com/playlist?list=PLMs-DCi6qWoIz1IvGuU3BkEOHdV8-nb_-
annie says
Really enjoyed this Professor Simon and the set of 14, particularly The Real Problem on the wider economic problem and the problem with the Challenger Shuttle disaster – very good.
https://www.youtube.com/watch?v=VeX4FnZS79Q&list=PLMs-DCi6qWoIz1IvGuU3BkEOHdV8-nb_-&index=6
On Medicating Normal viewings
Miranda Levy @mirandalevycopy
Delighted to appear on the panel discussion after this film on 13th May, on the harm that can be caused by psych meds. Alongside heroes @DrDavidHealy @markhoro @StevieLewis83 . See @UkSobriety
for more details.
Sobriety Films UK @UkSobriety
SFUK is holding an exclusive and virtual screening of award winning MEDICATING NORMAL with
@GenesisCinema
13th May 18.30. Tickets available on 4.5.20.. Live Q&A panel with
@DrDavidHealy
@mirandalevycopy
@markhoro
and Stevie Lewis.. Celebrating #MentalHealthAwarenessWeek
About the Film
https://medicatingnormal.com/
Sufferer says
as I say in another comment, as ok as Medicating Normal is, it still gives a softened version of what these drugs can do (permanent damage). The people in the film suffered and to some extent suffer from the drugs but the really nasty cases that exists in large numbers are not present. The awareness and alerting value of the movie could be much better , if it covered cases like the unlucky one here in question in this thread. Now it’s more like a surviving antidepressants theme movie “everyone will recover”, and that’s not true.
Justin Oxley says
Ludwig Boltzmann suffered from terrible mood swings which probably had something to do with the Statistical Mechanics of his Ion Channels which is peculiar if you think about it too much.
https://link.springer.com/article/10.1007/s41048-018-0074-y
Ryan says
Would creating a PSSD website with an intro to each sufferer, their first name and when they protracted the condition help. of course sufferers will be hesitant to put themselves on the website but wouldn’t this be a clear view of who has it and and to push the boundaries of being anonymous which is the first step, showing our faces ? I will be more than glad to create the website I just want to get insight on if this might be beneficial. This is a very rare condition and to have all the sufferers laid out on a map with their faces be a huge difference.
Dr. David Healy says
I think this might be beneficial. There are a group of women in particular who are willing to be known. There are people who are dead who are known. It makes it a lot harder to ignore you.
DH
Ryan says
In other words a short 60 second video of each sufferer where there from and how long they’ve had it all layed out in one website. This will shed more light to the condition.
Dr. David Healy says
it is up to those of you whose skin is in the game to work out what the best bet is
D
L says
These young people have done it https://www.facebook.com/amy.pearlman.5/posts/10105546660619557
Larry says
I wrote to David three years ago and got my name out there in support for the UK advisory decision which ended up happening!
I think the more people come forward, the better it will be. Truth needs to be revealed no matter how inconvenient or uncomfortable the proposition may seem at first.
I understand everyone is entitled to their privacy and views on the matter, but given the fact this condition is not nearly as well-known as others, there is more of a need here for concerted effort and willingness on sufferers’ behalves to step up and out into the light.
Count me in!
mary H says
Completely agree with what Larry has to say here. Many who have suffered from other forms of adverse reactions on/ in withdrawal/ following use of these prescribed drugs have shared their stories and continue to push for change. Many of them and their families/carers are willing to do all they can to help push your stories out too but this is hard to do when we don’t have your all-out support. That means coming forwards and showing full confidence in the fact that your lives count and that you have been let down by the system and you need our support. Trust in the compassion of the general public – and hope that it will take you further than the trust that you put in those nasty drugs that no-one warned you about .
As Larry says, count yourselves in – it could make all the difference.
susanne says
Larry = re the Advisory Decison – Is there a publication or available?
Anon says
On 3rd June 2013, I obtained 690 signatures.
It was successfully tabled in the House Of Representatives.
The petition submitted for the consideration of the Standing Committee on Petitions regarding legislation to improve consumer safety by requiring warnings and results of all clinical trials to be included in pharmaceutical labelling and information.
As you know, the petition was presented in the House on 3 June 2013 and referred to the then Minister for Health.
A response from the former Minister for Health was presented in the House on 12 December 2013.
Sadly, the response is not robust.
I remained anonymous.
Tap on the link and look at the 3rd of June 2013 with 690 signatures.
I did this whilst I was very ill but was passionate to get my concerns out to the people.
Please open out file to see petition and response.
I am creating an awareness about consumer safety because all clinical data pertaining to medicines is not out there.
Even the consumer information pamphlet does not disclose everything.
Many pharmaceutical companies keep their information vaulted so that the public don’t see it.
It is important that you create an awareness about this to your loved ones and all you come in contact with.
We need to educate ourselves about these issues because there is a lot of clinical data pertaining to medicines that is not fully out there for consumers to see.
https://www.aph.gov.au/Parliamentary_Business/Committees/House_of_Representatives_Committees?url=petitions/petitions_43/health.htm
Over prescribing and mixing a cocktail of medications with a combination of other medicines is not only dangerous but deleterious to ones health. It is like putting a loaded gun in someones hands. If only changes were implemented back then when I submitted a petition, unnecessary deaths, like Issac’s would have been avoided.
I am sure the statistics of deaths due to unsafe medicines and over prescribing is not accurately captured.
This is most often likely reported as overdoses or suicides.
https://www.abc.net.au/news/2021-05-05/isaac-died-taking-prescribed-medications/100043708
How many deaths will it take before people listen?
susanne says
Amy Pearlman is inviting people to get in touch – e mail below
Amy Pearlman, MD
Urologist, Sexual Health Specialist
https://medicine.uiowa.edu/urology/profile/amy-pearlman
June 15, 2020
To Whom This May Concern,
My name is Amy Pearlman and I am a urologist specializing in sexual health at a large academic institution. I have helped care for several young men with a history of selective serotonin reuptake inhibitor (SSRI) use who are suffering from long-term genital anesthesia and erectile dysfunction that started after taking an SSRI(s). Though impossible to say for certain whether these side effects are a direct result of prior SSRI use, the timeline of SSRI treatment and subsequent sexual health symptoms, despite cessation of SSRI medication, suggests that the medication is, at least, associated with these symptoms.
Despite normal hormone levels and penile doppler ultrasounds, in addition to medical management with oral phosphodiesterase inhibitors and alpha blockers, and pelvic floor muscle therapy, I have been unsuccessful in finding a reliable treatment for these men. I absolutely believe, based on my training and experience seeing these patients, that long-term sexual side effects despite cessation of the SSRI(s) is a real phenomenon, even though we haven’t yet figured out the reason.
I’ve discussed my concerns with mental health providers and my patients who regularly follow with mental health providers, and I worry that the sexual health conversation is not routinely part of the mental health discussion, thus, I have no doubt that post-SSRI sexual dysfunction is more common that we currently appreciate.
In the recent weeks, I have had several men and women from across the country reach out to me with their concerns about suffering long-term sexual side effects related to prior SSRI use and, inspired by their stories, I have built a multi-institutional team of sexual health experts to help me study this underrecognized and under-appreciated disease.
As someone who has built her career treating people with sexual dysfunction, these men and women with whom I have talked are suffering from this life-altering condition. As a result, I feel strongly that additional research, resources, and medical attention are of utmost importance.
Amy Pearlman, MDAmy Pearlaman
Contact us at pssdcanada@gmail.com
Justin Oxley says
I have to get through another day which will be alot harder work than it should be with the relentless withdrawal symptoms taking up most of my avaliable resources. It’s grim and for some reason still always worse in the mornings, the supplements I take do help they make days feel like less of an unplesant endurance test. I have to schedule my activities around the periods when I feel better which are unpredictable. It’s rather exhausting and frustrating. If you see a fella shuffling along the pavement with a thousand yard stare in Harlow that might be me.
Sufferer says
DH
your answer still is just defence and dodging away from how to change this all from the point of view of doctors.
Just keep on talking and riding many horses. As said a true man would do something else more straightforward if he really wanted to change something . Realizing this seems to be triggering you.
Dr. David Healy says
Faceless
You are good at sneering. Is there anything else you’ve done to help anyone affected by these conditions?
You made a good point about medicating normal dealing in recovery stories only when they should have added in more about the permanent damage for many – and then you sneered at Altostrata.
You’ve never seen anything here that suggests doctors are anything other than a bunch of wimps. They ended up in 1951 being the people through which the poisons come – because it suited the bureaucrats in FDA and the pharmaceutical industry realised it would also suit them. And making a comfortable living out of this doctors aren’t likely to change any time soon and have made things more comfortable by forgetting they are dealing in poisons.
The reality now is that a lot of the prescribing gets driven by people like you seeking out the poisons – and not doing your own due diligence on what you are taking. By people like you being taken in by the idea that these are sacraments. More fool you.
At the end of the day, you and others depend on the courage of some of the people linked to what we are doing here (not mine) to go public in their efforts to raise awareness of the profile of the problems and the courage to try some poisons – because this remains the likeliest way we are going to find an answer to what has happened and how to put it right.
And when we do, you’ll benefit without ever having the courage to do anything that requires courage.
DH
Sufferer says
You blame the patient, even one that has been awake much more than anyone should be?
Let me tell you my story, so you think a bit of what you say.
I knew well about ssri / snri risks and even of the ridiculous term pssd. That’s why I in a very tight spot thought I can try something not in these categories, and all doctors ensured the other categories are safe. I took a short time of mirtazapine and that was enough to damage me into oblivion sexually, emotionally and physically. 7 years now, no recovery. During these years I have found a large number of people that got hurt by also non ssri antidepressants. And you blame the people who at the time of their big pain are not able to even do the kind of research I did, and are fed these drugs of fully unpredictable and most often not helping effects.
It’s appalling to blame the victims and even in your position. Unbelievable.
You list all kinds of reasons why you could not be a model and example to other doctors like Breggin is. At your age, you position and riding multiple horses (streams of income) you state you are pretty much “forced” to continue the drugging even if you could make a difference and lead the way . And then you go as down as blaming the victims.
ps. what if you at least start warning about non ssri antiperspirants too, since you certainly have heard of them causing same kind of outcomes too. Pssd is a made up term and since you accept and warn finasteride can cause this, then add all the substances people have told you about as having damaged them to your warning . This would be at least something, since it sounds like you “have to be prescribing them”, and the victims are the guilty ones.
Dr. David Healy says
I’ve blamed you for sneering.
I agree there is a general problem – doctors and patients used to know that drugs were poisons and to get good out of them both doctor and patient needed to remember that – this meant not using them unless their use was warranted.
Both sides have forgotten that. Both sides. If I try to stop someone like you accessing the latest sacraments these days, I will get fired. There is no way consumers like you won’t be let get what you want.
There are a ton of people linked to this site trying to find answers not just to PSSD but to the many problems antidepressants and other drugs cause but also to the bigger issues about what can be done to change the bigger culture. You don’t know half of what’s being done – likely pointlessly and certainly without anyone gaining a cent.
While you – sneer
D
Larry says
I believe David is right here. There is accountability on BOTH sides. The solution moving forward, however, is to understand and accept this, without anger, and to proceed to work hand-in-hand (doctors, patients, and the afflicted) on a solution.
Very grateful to David and all the voices out there talking about the dangers and realities of all this stuff that many are not willing to realize or understand!
Justin Oxley says
I think this fella probably makes some sense about the dissociative states I get at the moment. Alot of people in withdrawal conditions probably get dissociation along with all the other ‘fun’ symptoms like mood swings, anxiety and excessive sweating. It’s hardly surprising people dissociate when experiencing symptoms there is nowhere else to go.
https://youtu.be/dbi5gJFQi6Q
susanne says
This has been flagged up before but it’s worth pointing out that the guidelines would never have been changed without the efforts of campaigners which vitally include medics . Hardly surprising there will be points of friction and dispute but it’s doubtful if much progress would have been made and won’t be made for ‘sufferers’ of sexual dysfunction caused by prescription drugs ,without their committment, encouragement and support.
Lack of evidence on safe methods to stop antidepressants, study finds
Lack of evidence on safe methods to stop antidepressants, study finds
Beth Gault
05 May 2021
There is little evidence that the current approaches to stop antidepressants in long-term users are safe and effective in people with recurrent depression, researchers have warned.
The recently published Cochrane review looked at 33 studies with 4,995 adult participants, which recorded different methods of antidepressant withdrawal, including stopping abruptly and stopping gradually over several weeks – or tapering.
Guidelines currently recommend that an antidepressant should be continued for at least six months after patients start feeling better, and for at least two years if they have had two or more periods of depression.
The review concluded that the evidence in this area was ‘very problematic’ and it was uncertain whether the methods studied to date are effective and safe in people with recurrent depression.
In a blog on the review, co-author Ellen Van Leeuwen, said: ‘The rise in long term antidepressant use is a major concern. For example, in the UK nearly half of people using antidepressants (8% of the total population, approximately 3.7 million people) have been taking them for more than two years.
‘Antidepressants that, despite initially being appropriate, are not discontinued after the recommended duration can lead to unnecessary harm and costs.’
She added: ‘Honestly, the evidence in this area is very problematic. It is not possible to make any firm conclusions about the effects and safety of the approaches for discontinuation studied to date. There were only a few studies with a focus on successful antidepressant discontinuation rate.
‘The main problem is that studies did not distinguish between symptoms of relapse of depression and symptoms of withdrawal after discontinuation.’
Withdrawal symptoms can include insomnia, low mood, anxiety and changes to appetite, but they are also recorded on the depression scales used to detect relapse. This could ‘inflate’ the rate of relapse in groups that stop antidepressants, according to co-author Mark Horowitz.
He added: ‘Additionally, most tapering regimes were limited to four weeks or less, in contrast to NICE guidelines recommending tapering over four weeks or more. In fact, there is now increasing recognition that antidepressants might need to be tapered over months or longer than a year to very low doses for long-term users.’
The authors said, despite the inconclusive data, the study would enable clinicians to openly discuss options with their patients, with the potential benefits or harms of continuing or stopping antidepressant use, but that more research was urgently needed.
Ms Van Leeuwen said: ‘This review reinforces the call for more research in the primary care setting, particularly for people with low risk of relapse and those for whom there is uncertainty about the benefit of antidepressant treatment.’
The review comes after NICE was forced to delay the release of an updated guideline for treating depression in adults after it came under scrutiny for ‘out-of-date’ advice on antidepressant withdrawal.
The original guidance had advised that symptoms are generally mild and self-limiting over the course of a week, while the updated guideline warns of ‘severe’ and lengthy antidepressant withdrawal symptoms.
Justin Oxley says
I tend to make mind analogies with what happens with a computer as I like to think simple. If you flood a micro with too many interrupts external or internal the operating system will begin to cancel tasks as there is has not the capacity to process the demands being placed on it. That happened with the Apollo 11 LM module when it was trying to land on the Moon the processor was swamped which caused its performance to degrade. You don’t have to be an expert on data structures and algorithms or have read the entire set of Donald Knuths books to deduce something analogous to an interrupt storm occurs during withdrawals. The poor old brain becomes overwhelmed by the storm of spurious interruptions and is distractable, can’t focus, executive function and mental flow is impaired which makes one feel ones mind is going such a condition evokes fear and the amygdala getting triggered rather more often than one would like. I tend to think of what happens when I am trying to navigate the outside world in a withdrawals state using the swamped by spurious interrupts analogy. The irritability threshold iis lowered then more easily triggered by loud noises and dealing with daily events, a swamped brain has alot more trouble dealing with normal life so to escape it dissociates.
Dr. David Healy says
This makes a good deal of sense. Serotonin is one of the most primitive neurotransmitters. When we interfere with it we affect gut, muscle, skin, eyes, bone, blood and pretty well everything. Stopping interfering doesn’t restore things to normal. There are going to be signals overloading the brain for ages afterwards.
The good news is that while people feel their brain is badly affected, there may be very little brain damage. The problem is an overload one as Justin suggests
D
Justin Oxley says
There are quite a few papers that talk about Serotonin like this one. I’m taking Omega 3 and Vitamin D already, I’m not so sure taking a Tryptophan supplement is a good idea whilst still taking an ssri. Not sure I go with my gut feeling quite a bit as otherwise I could be here forever stuck in an infinite loop without making a decision.
https://faseb.onlinelibrary.wiley.com/doi/10.1096/fj.14-268342
susanne says
Just took my computer to store as wouldn’t switch on. The guy said it’s an overload problem when too much power remains in the system so it needs to be drained. Very simply for this problem by pressing power on and releasing quickly. bodies aren’t machines obviously but some machines are as complicated and rely partly on understanding of electricity and on off functions as in bodies . I have tried contacting an electrical engineering uni dept ages ago but is it worth a look down this avenue for research? eg to find a switch which might drain off the overload of chemicals –
susanne says
Maybe going against the grain again but I find the use of algorithms intersting if used with the cautions in the summary It is all too obvious that all practitioners don;t know enough about what they prescribe — this would reassure me somewhat if the clinician -individual and some use of decision aids was available
Respiratory Medicine CME Elsevier
Volume 2, Issue 2, 2009, Pages 63-67
CME Article
Algorithms for assessing the probability of an Adverse Drug Reaction
Author links open overlay panelMartin J.Doherty
https://doi.org/10.1016/j.rmedc.2009.01.004Get rights and content
Under an Elsevier user licenseopen archive
Abstract
Adverse Drug Reactions (ADRs) are common and are associated with significant risk of morbidity, mortality and admission to hospital. Deciding if a clinical event is an Adverse Drug Reaction, or not, can be difficult. The decision is often based on clinical judgment alone, yet studies have shown that decisions based on clinical judgment often vary greatly between raters.
Therefore a number of decision aids or Algorithms have been developed to try and improve this variability. Studies have shown that the use of algorithms does improve the between and within rater agreement significantly, and gives a semi-quantitative measure of the likelihood of causality. There are variations between these algorithms but none of them can in themselves prove or disprove causality. These algorithms, their benefits and their problems will be discussed in this article.
every 1000 hospital admissions die as a result of an ADR.5 The economic impact of ADRs is massive; they increase hospital stays by almost two days on average, with its intending costs. The total cost of ADRs in the USA has been estimated to exceed the cost of all diabetes treatment.
Recognition of ADRs
The ADRs produced by a certain new drug are often recognized when the medication is undergoing its phase three randomized controlled trials. Both in the USA and in the UK there is post marketing surveillance of ADRs. In the UK this involves reporting suspected ADRs to the Commission on Human Medicine using the yellow card system. In this system new or intensively monitored medicines should have all suspected ADRs reported and other medicines should have any suspected serious ADR reported. In spite of these mechanisms ADRs are vastly under reported6 and initial reports of adverse reactions to drugs have taken up to seven years for trends to begin to appear in the literature.
Under reporting of ADRs is likely to be due to a number of reasons. Reporting is not mandatory to clinicians in the UK and so is likely to be forgotten about amongst the many other work pressures. A clinician may have problems recognizing the scenario as an ADR, because of the background symptoms of the patient’s original illness. Clinicians might also be wary of reporting an ADR, because of worries of inducing a complaint, even in this no blame culture NHS. It should be pointed out that the yellow card clearly states you do not need to be sure if it is or is not an ADR before you report it.
In recognizing an ADR there are a number of important factors. One is identifying those individuals in whom ADRs are most likely to occur. This includes the aged and the premature, those with liver and renal dysfunction, those on polypharmacy and patients with certain individual conditions, such as Human Immunodeficiency Virus infection (HIV).
Assessment of causality
It is often difficult to decide if an adverse clinical event is an ADR or due to deterioration in the primary condition. Furthermore, if it is an ADR, which medicine caused it, as many patients are on multiple new medications when ill, particularly if admitted to hospital.
In spite of these problems, the decision that a particular drug caused an ADR is usually based on clinical judgment alone. Studies have shown that there is a lot of variation in between rater and within rater decisions on causality of ADRs; this applies both to pharmacologists and physicians.7, 8 In one study two physicians and four pharmacists were asked to decide about 63 possible cases, they showed a between rater agreement of 38% to 63%.9 Another previously published study showed a 50% agreement between two raters with a Kw value of 0.3.10 These problems with using individual clinical decision making in allotting causality for a change in clinical condition to a medication led to the development of a number of decision aids.
The benefits of algorithms
Decision aids or algorithms were developed in the 70s and 80s, they tend to consist of yes/no questions, which can be used to categorise causality. For instance the Jones’ algorithm11 will categorise the causality into remote, possible, probable or highly probable. Other algorithms consist of yes/no questions, the answers to which correspond to a set score. So by answering all the questions in the algorithm you end up with a total score, this numerical score then corresponds to a given category of causality.
There are benefits in the use of such algorithms; including standardization of methods. Algorithms being structured systems specifically designed for the identification of an ADR, should theoretically make a more objective decision on causality. As such algorithms should have a better between and within rater agreement than clinical judgment. Indeed this has been shown to be the case.9 In this study the between rater agreement of a panel of experts, using clinical judgment ranged from 41% to 57% (kappa = 0.21–0.37, R(est) = 0.49). When the same individuals used the Naranjo Algorithm it rose to between 83% and 92% (kappa = 0.69–0.86, r = 0.92), this rise being statistically significant. The within rater agreement was also high using the algorithm, being between 80% and 97% (kappa = 0.64–0.95, r = 0.95).
Comparing the algorithms
A number of algorithms or decision aids have been published including the Jones’ algorithm,11 the Naranjo algorithm,9 the Yale algorithm,12 the Karch algorithm,13 the Begaud algorithm,14 the ADRAC,15 the WHO-UMC16 and a newer quantitative approach algorithm.17 Each of these algorithms has similarities and differences. An example of one of the more commonly used algorithms; the Naranjo algorithm (Fig. 1) is shown below. The consistency of three of these algorithms was directly compared in a study in 1986.18 In this study 28 ADRs were assessed using the Jones’, the Yale and the Naranjo algorithms. There was 67% agreement between the Yale and the Naranjo algorithm (Kw = 0.43), similarly there was 67% agreement (Kw = 0.48) between the Yale and the Jones’ algorithm. Agreement between the Naranjo and the Jones’ algorithms was 64% but the Kw value was only 0.28.These levels of agreement are better than those that have previously been reported when two raters have compared the same ADRs using clinical judgment.
Download : Download full-size image
Fig. 1. Naranjo algorithm.
They concluded that the Naranjo algorithm compared well with the Yale in scoring ADRs but had the advantage of being less time consuming. The Yale algorithm containing 57 questions compared to the 10 questions in the Naranjo algorithm. They were less supportive of the use of the Jones’ algorithm in view of its lesser agreement with the Naranjo algorithm. To reduce the ambiguity in the assessment of potential ADRs these algorithm have been introduced at pharmacovigilence centres in many countries.
Problems with algorithms
Although algorithms have better reproducibility than clinical judgment in rating ADRs, clinical judgment with its low inter- and intra-rater agreement still plays a big part in the identification and rating of potential ADRs by an algorithm. This is because the answers to some of the questions in the algorithm may be affected by clinical judgment. More importantly the first step in ADR identification depends on a clinical judgment, i.e. the decision that this might be an ADR and so deserves further assessment using an algorithm.
Further problems include that the questions in an algorithm are often weighted, these weights are arbitrarily assigned based on their perceived importance and vary between algorithms. This qualitative assigning of weights means that algorithms are unable to truly determine the probability of the ADR causality.
Even though algorithms have been shown to be more reproducible than clinical judgment alone, the validity of the measure must also be considered. The fact that the algorithms agree well with each other does not mean that they are right. Studies have looked at the validity of algorithms, by comparing the category of causality that they produce to the decision on causality decided by a group of experts in the field. This is not a true test of the validity of an assessment system, as this testing cannot work as for as the majority of ADRs, no true “Gold Standard” exists.
Further problems include the idea that most include questions on dechallenge/rechallenge, and the rechallenge often does not occur in the “real world” of clinical practice. This might not occur for a number of reasons, for many serious ADRs rechallenge might be considered unethical, since it may pose a considerable risk to the patient. Also for many lesser potential ADRs using a different drug rather than undergoing the rechallenge may well be deemed an easier and simpler option by the clinician. Even if the clinician is willing to consider rechallenge to strengthen the probability of causality for an ADR, the patients themselves will often refuse such a rechallenge. Without a rechallenge it is difficult with most of these algorithms for causality to be graded more than “possible”.
Algorithms depend on a YES/NO answer to individual questions, this is not always easy, sometimes a “maybe” might be more appropriate. So in a way algorithms may simply replace honesty with pragmatism. Lastly there are a great number of ADRs in a number of different body systems, so a single standardized assessment tool may not be ideal for such a diversity of possible presentations. More recent work has tried to develop assessment schemes for individual problems e.g. liver disease, interstitial lung disease, and renal failure.19
Summary
In summary algorithms are useful in assessing causality in possible ADRs, as they decrease the disagreement between assessors and can classify uncertainty in a semi-quantitative way. They are often used by journals and national pharmacovigilence organizations to mark individual case reports. They improve the scientific basis of causality assessment and are useful in education about causality assessment. However they cannot prove or disprove causality, nor give an accurate quantitative measurement of the likelihood of a relationship.
Dr. David Healy says
Suzanne
Listening or being able to listen is the key. Not an algorithm. We have the Naranjo algorithm built into the RxISK report but if people are too scared to bring it to their doctor because they don’t think it will be listened to and if doctors don’t know the basics of working out if a drug causes a problem, an algorithm is not going to help
D
susanne says
As serotonin effects so much of our bodies it is sad that those many of us who trust what used to be called ‘alternative’ practioners, now slightly more respectfully ‘ complementary’ pratitioners are treated as though we have one foot in la la land. MAssage treats the skin, herbs the gut and eyes and other parts of the body as well as help with sleep… and so on They can have serious adverse effects but no more than pharma drugs Plus there are some which are used for sexual problems Maybe there could be some research on using them to find a cure and claim the Rxisk prize
annie says
A total overload then means that ‘death can be a welcome result’…
The ‘agitation’ predisposes some to take radical action.
I was thinking about the three days from when I left the mental hospital having restarted Seroxat and spent six days with diazapam and three days later ‘death was a welcome result’.
Driving home, after about ten minutes all sorts of thoughts came in to my head. As I drove my mind was fantasising about ‘death’. I carried on as these thoughts grew and grew. When I was home I stood in our sitting room totally displaced. No thoughts at all. It was a dream, a trance-like state, I was looking at my little girl and her father as if I was trying to see through a wall-of-water. This feeling persisted through Saturday and early on Sunday I jumped out of bed in the dark and at 100 mph set about using gas, knives and ropes and finally overdosing on 28 Propanolol.
This calmed me down and I was sick. I phoned a friend and she came and I was taken from local A&E to a large mainland hospital where the spree continued.
I was incapable of telling anyone what was going on. Whatever was inhabiting my body, it took all of my normal communication with it. I implored a doctor to get me Seroxat and with this pill in my system I woke up to see a familiar face doing his rounds. It was my orthopaedic surgeon and I told the nurse that I had an appointment with him that very day. He came over and checked on my foot.
God knows what he thought with bloody bandages on my wrists. The ward was a geriatric one and I asked the sister if she had a private room as it was so noisy. As luck would have it there was one.
I didn’t tell anyone what had happened because I was incapable of doing so.
I don’t know what you would call it. Acting out a nightmare, going through an out-of-body experience, overtaken by aliens…
What I do know is that drugs like Seroxat cause a massive malfunction which is why I understand how people like Stewart acted so out of character in this huge state of agitation which takes over body and soul. There are no 24-hour guards when the world of ‘akathisia’ takes over…
My second withdrawal was an improvement on the first with the liquid but it fell at the last hurdle and although I desperately wanted to restart the Seroxat, how could I possibly do that….
Flat on my back again for months, I gradually came back to life.
Apollo and ‘dissociates’ and ‘interrupt storm’ is a nice touch…
susanne says
has anybody had the agitation recorded as paranoia on medical notes? When the restlessness begins it can seem like a running away from something unknown and fear of even people known let alone strangers. This incorrect ‘diagnosis’on a record can lead to all sorts of further confusion and harmful treatments even incarceration
Justin Oxley says
If your interrupt service routines are overloaded you might have difficulty working in the service industry your performance may drop. I can imagine some places I would really not like to work right now, working in an Amazon warehouse has to be quite high on my list of jobs I would immediately resign from. I’m overestimated and crippled with decision paralysis just shopping in the grocery store so it’s best to leave Justin alone with his peace and quiet at the moment. I’m a bit of a Melvin Udall type personality.
Justin Oxley says
Here is Kevin Fong again, I worked with him years ago at UCL. I’m feeling alot more ragged than him these days. I did send him an email pointing him at the RxISK site I thought it might do some good as he hangs out with alot of doctors.
https://youtu.be/Fe0XV4ujHNE
Daniel says
I have an idea on how to achieve progress for pssd and other iatrogenic problems and i belive it is the right thing to do. Here comes a long explanation on why.
We need for this to become known, it would, i believe increase the likelyhood that scientific interest in understanding ssri iatrogenesis increases? At any rate, i figure it would be godsend to increase political interest in reforming the way/extent to which drugs are tested in order to find the real risks. But it would, i believe, be very difficult to convince the public that the system “would ever be allowed to do anything so harmful/unsafe” that the drugs they resort to in order to alleviate their suffering and feel they need is dangerous, and nurses dont want to believe what they do is harmful (do a quick websearch on “choice under cognitive dissonance” )and are tought to believe in their system and doctors cannot imagine either that they themselves or their databases/ for side effects are wrong. The power of dogma is very severe.The phamaceutical industry who deny or downplay problems and worst of all: all these groups (laypeople, nurses, doctors, journalists) of people, when trying to find authoritative and objective views they will find most proffesional psychiatrists, most large medical information websites and most clinical trials all tell the same narrative, that is one ommiting serious permanent harms for many who take them, one which tells you these sources are indeed the authorities on the subject.The problem is you cannot partially make people understand the situation (im thinking of understanding in a deeper sense which is needed to explain it to others) There are so many points of control they (the pharmaceutical industry) have over the publics sense of reality: so if you tell people (who care, who want to find out the truth) “there are these specific kinds of serious risks of permanent harm that are not captured by the clinical trials” then they will eventually seek out a psychiatrists (an “expert”) opinion and get to hear that their medications “dont have those kinds of grave harms” and “dont listen to to those wierd” conspiracy theorists” on the internet, were the experts we are the ones who know, those are symptoms of depression” and if they look on the internet they will find the same narrative If you tell them (a non involved layperson/or holder of power or influence) “most proffesionals in medicine/psychiatry are ignorant of these severe risks and they are not appearing on warning labels or in their databases they use” then they would likely go to the internet and look at the academic litterature and clinical trials to find out harms vs benefits(normally a reasonable strategy to figure out the truth), most with ties to the industry or ghostwritten and or manipulated science all saying that ssris are wonderful.If instead you told people “psychiatrists usually blame harms from drugs on the patients illness and keep giving them drugs that harm them more, in order to treat the” “illness” they would say “no society would never allow that especially not for medications given for”health” reasons/we have systems to prevent that/theyre nice people/media would have reported it to the public a long time ago”(though they have economic ties with pharma, censored peter gottzsche every time he tried to tell about drug harms in tabloids, using “they would just harm society or themselves if they got the idea that they should stop using them” as a pretext.Also when they made a documentary all critical parts were cut Media also treats the medical authorities as objective and reliable sources. Also real violent crimes caused by ssris are always reported/framed as being caused by the patients illness as Healy has shown),If instead you told them “the medical research do not test these drugs for withdrawal harms or their effects in the polypharmacy regimes that they are being used in, or long term usage effects” they will instead assume “authorities must take that into account when assesing drug safety” (though they do not) . If you tell people of any kinds of problems with the drugs or the research on them or the medical doctors, they will assume that the problems cant be that severe authorities would never have allowed that(though they often have revolving doors with pharmaceutical industry)or “i would allready have known if that was true media would have reported it”
Trying to tell one or two things of the situation to a noninvolved person can often (in my experience) be as diffycult as trying to cut the head of a hydra, another one will grow back,i mean specifically from what they believe about society or medicine which make sure that they will not be capable of fully seeing this societal problem which is on so many levels of the societal apparatus academic, clinical conflicts of interest, revolving doors in the governing bodies(which are made and function by socially engineering trust from the public) with the industry, all these sources of information, these pieces of a narrative or impression has the power to make people forget, discredit or diminish the importance of what revelations and warnings you have given them.
They have so many points of control over peoples beliefs.If you are not informing them fully enough they will retain their illusions on the big picture of the medical system. And if you tell too much, too many deep ways in which people are decieved by them people will feel that you are so arrogant who think you know better than so much of the establishment, that rejects the validity so many of the
expert sources that they ran into saying that the drugs are wonderful and healthy and that “all drugs are rigourously tested and safe”, and if you talk about the corruption in medicine as well as other evils as well they will feel as if it is perhaps mainly your attitude as opposed to fact, or maybe you are a conspiracy theorist? Im gonna get to the point. In the face of such severe control of the narrative by the medical establishment and the pharmaceutical industry, it will be harder to make people both seeking out information/engaging in it AND convinced of a societal system that fails their trust AND able to with confidence and clarity explain it to others, all without being swayed by dogma.
Unless you bring hard evidence of both the problems and their magnitude.
Even if you make someone convinced of these things they will not be able to second hand convince others of information they dont fully remember, have no written comprehensive yet fairly easy to go through list of facts with references giving evidence giving confidence to spread awareness.
Such a list would have to include evidence on the aspects of the dysfunctioning roles of institutions like “evidence based medicine”, media and website conflict of interests and its results in terms of censorship/distortion and things like genital numbness proving pssd is not depression,things like 100k us citizens a year are killed by prescriptions, the record of distortions of truth by the pharmaceutical industry,that the medications create new illnesses, that much of established medical opinion on safety and benefits is manipulated and proven to be wrong, that iatrogenesis is worsened by giving further harmful medications to treat it which they regularly say are mental illness symptoms. That the gradual and variable nature of the harms make it impossible to know what portion of “normal” mental illness is actually caused by medications, and that the symptoms are overlapping. That trial measure only parts of the real risks. And trying to get some kind of quantitative evidence on all these things whenever possible. Essentially we need a collection of enough hard evidence of a nature which would explain, both medical and political, and human suffering aspects of this until there is no longer possible for it to fail to make people understand and desire political change, even in the face of all the power over reason, thought, authority, research medical practises, as well as our views and definitions of the illnesses as well as all objections or scepticism about the idea that “society could be failing at that level (and it is failing, otherwise it would have adressed the problem. And the problem is the pharmaceutical industry more then anything else) Society fails on so many levels because if not all these parts of the societal system: trials/research, professional opinion with its conflict of interest, media with its denial of coverage and active censorship, the authorities with revolving doors with the industry, then the problems would eventually be known and solved, atleast in terms of people would avoid unneccessary medications and be able to recognise at an earlier stage when impaiments are caused by iatrogenesis and protecting them from further harm, and enabling doctors to know that repeated withdrawal processes (going on and off medications) is more risky, and creating demand for and interest in research on withdrawal effects. Clearly many sufferers of iatrogenic damages(if anything that is the strenght of many of the community 🙂 as well as scholars know a lot about these things. So if we created as resource /wiki or something with hard evidence to that awareness and clarity promoting end, that gives whole picture , any work made to it would empower each of us with the clarity of many of us combined, (even the cognitively impaired could use it to derive leverage to convince people like politicians if broad and subtansive enough evidence was there and journalists could be directed to it to not have them caught under the spell of the conventional narrative, to make them see through the confusion). Every achievement in such a work would become x times more powerful in making a difference because so many people could with low effort make use of it, times y times again which is the average amount of people every person would send it to/base attempts to make people care about us on. And further times z which would be the amount of people these people pass it on to.It would be very empowering. And primarily we should influence politicians and journalists and maybe also people who are famous enough to make these things publicly known. With all these morally outrageous things pharmaceutical industry has inflicted upon society, some politicial opposition parties in the world might also see it as a strategic gift to appeal to voters with, by crusading against wrongs and holding the establishment accountable. I actually feel it is the rational thing to do. We all know things about psychiatry and the pharmaceutical industry and our adverse effects. I cannot any programming myself but if someone could do it we could all contribute to it.
Justin Oxley says
Data and Heuristics
Here is a vast database of what is known about medicinal plants. It could take rather a long time to read it all. I suppose before we had computers and the internet you had to ask a filing clerk to go through a huge amount of paperwork I wouldn’t like a filing clerk job. It might be a good idea to replace doctors with some sort of AI system. I want you all to learn about all these medicinal plants there will be a test on it next week.
https://garden.rcplondon.ac.uk/
https://youtu.be/EKWGGDXe5MA
susanne says
Thanks very much for the RCP video Justin. I’m likely to be absent for the test though – will send in a sick note. Wrote to the KEw garden physic garden bods ages but no answer Will try the RCP but almost nil expectation of an answer.
Justin Oxley says
I think Medicine has gone a bit wrong and needs some improvements.
https://youtu.be/fbUc5nsAPTo
Dr. David Healy says
This is utterly stupid but it does offer a symbol of some sort for what has happened medicine. The thing is you know just what is going to happen from early on in this case and in medicine – but no-one in medicine seems to spot the inevitable outcome.
Daniel below in a very long comment asks should we put together a database of all the evidence that points to problems – It might be a better bet to collect a lot video-clips like this that tell doctors in a different way what is going to happen them.
Those who pick on people like Altostrata or RxISK to sneer at – might do better imagining more creative ways to get the message across – like these video-clips or like the maker of The Honest Psychiatrist (can be seen on Facebook) who is one of the powerhouses behind RxISK and other efforts to make a difference.
DH
Daniel says
Is my idea stupid, why?
I believe if (1) the drug testing research is failing, drugs are given widely to depressed/anxious or ADHD or autist teens as a way just to make them more managable causing harms in development, they dont know any better than to trust and neither do prescribed adults, and (2)all authorities on the truth tell you the drugs are safe (they are very dangerous),(3)the diagnoses are developed under the influence of lobbyists,are creating for socially and psychologically vulnerable, and confused suffering people with mental problems :the very identities and sense of reality of themselves the nature of their thoughts and differences to their peers and nature of their suffering, and that is abused regularly to sell drugs to people. If (4)the nature of the drugs as they will actually affect people (with withdrawals, or for that matter in combinations with different drugs) has not not been tested for safety, such that using them in combinations amounts to a forms of de-facto human experimentation. If (5)lobbyist influence and corruption/”conflict of interest” is widespread. If (6)doctors and psychiatrists can get away with causing severe harms and blaming them on the patients illness, and no one including, the doctor him/herself, can tell the difference.
If (7) 100k people/year are killed in the us from drug prescrptions.
If (8)clinical medicine is captured by the idea that giving drugs is the way to health, despite massive amounts of evidence that lifestyle could save more lives in most fields. _________________________________________________________________
If so THEN it is a societal problem, and it is due time to take action to make political difference.
susanne says
Luckily my phone belongs in the steam age
The Wall Street Journal
The Rise of Big Data Psychiatry
The information captured by our smartphones, as well as new speech- and facial-recognition technologies, can yield invaluable insights for mental health professionals.
By Daniel Barron
April 29, 2021 10:00 am ET
As a physician, I need to figure out three things when a new patient walks into my office: what their life is typically like, what has changed that made them seek treatment and what I can do to help them. It’s a complex problem, and most fields of medicine approach it by taking measurements. If I were a cardiologist evaluating a patient’s chest pain, for instance, I would speak with the patient, but then I would listen to their heart and measure their pulse and blood pressure. I might order an electrocardiogram or a cardiac stress test, tools that weren’t available a century ago.
Because I’m a psychiatrist, however, I evaluate patients in precisely the same way that my predecessors did in 1920: I ask them to tell me what’s wrong, and while they’re talking I carefully observe their speech and behavior. But psychiatry has remained largely immune to measurement. At no point in the examination do I gather numerical data about the patient’s life or behavior, even though tools for taking such measurements already exist. In fact, you likely are carrying one around in your pocket right now.
In the last decade, an entire industry has been built to predict a person’s behavior based on their smartphone use and online activity. Because our search and social media history is digitized and time stamped, it represents a permanent breadcrumb trail of our thoughts and emotions. Tech companies and governments already use these data to monitor and commodify our likes and dislikes; soon psychiatrists might be able to use them to measure and evaluate our mental state.
Our smartphones measure our movements with accelerometers, our location with GPS and our social engagement with the number of calls and texts we send. These data have extraordinary potential for psychiatric diagnosis and treatment. Studies have shown that the words we use to express ourselves on Facebook and Twitter can predict the emergence of conditions like postpartum depression and psychosis. A person’s recent Google search history, it turns out, is a better predictor of suicide than their clinician’s most recent notes.
Digital tools could also help psychiatrists measure a patient’s behavior during a session. Each visit to a therapist creates a wealth of clinical data that is currently wasted because it’s not recorded or analyzed. Speech and facial recognition technologies could be used to precisely measure a patient’s expression, the words they use and the intonation of their voice. Such tools could be used to recognize the subtle changes that occur when a patient is about to become floridly manic, or analyze how they respond to treatment. A recent study by Cheryl Corcoran published in the journal World Psychiatry showed that elements of speech such as coherence and the frequency of possessive pronouns (words like his, her, my or mine) can predict, with an accuracy of 83%, whether someone at risk for psychosis will actually become psychotic. Such data is created at every clinical encounter, but it is far too subtle for a doctor to detect.
TO READ THE FULL STORY – if you pay for it –
susanne says
Who is the brilliant maker of The Honest Psychiatrist? Do they/she/he/medic/other work for Rxisk? I am not computer savvy so can’t work it out, Just wondering whether clinicians in paid work are happy to be openly identified with Rxisk ? I remember it wasn’t possible for consultants to introduce Rxisk to students or service users – is it the same at Hamilton which seems a very different institution.
Dr. David Healy says
The Honest Psychiatrist is a woman and not a medic. She does a lot more than just help RxISK and me in lots of ways.
D
susanne says
Could she make one of those mini videos of the sort of consultation you would think most beneficial – bearing in mind consultations should be different for each individual there would be some elements in common
L says
seems that those videos don’t reach many people, there would be much more impactful ways to put a reality in the media spotlight..
L says
– after identifying researchers interested in exploring the problem, the main problem is revealed: funding. then the patient group or association contacts the ministry of health in their country and tries to get that funding (because usually the pharmaceutical companies pay them, but obviously this is not the case). this is an attempt to be made in my opinion.
– To increase the connection between patients you need national channels to keep in touch, forums, groups etc.
– Involve magazines and journalists to write articles about pssd. send dozens of emails to health, medicine, science etc. news websites. among many who won’t answer, some will. the article may be an up to date presentation of the topic + words from some researchers or specialists involved + testimonials from patients and reference links (patients’ website). involve more relevant media such as TV shows.
– these efforts could move things very little even in years… maybe we just need more courage and inventiveness or maybe strong actions against this whole situation would have more power.
Dr. David Healy says
Like what?
Hunger strike outside doctors offices?
D
susanne says
We’d be dragged off -medical files from the doctors’ offices trawled through -and sectioned . Good story for the media but not the one we’d want.
Daniel says
Maybe we would make more of a difference more easily ,if we pssd/drug damaged patients read about philantropic activity, and tried to make them sympathize with our cause and help us get funding for these researchers? There is an astronomical amount of money going to charity and philantrophy each year, maybe there is a chance!
But we probably need those channels,groups,and testimonials first to point to.
Dr. David Healy says
Daniel
There have been lots of efforts over the last 20 years made by people with influence – there were UK Parliamentary Hearings about these issues in 2004 – there was a set of 4 Panorama programs about the issues between 2002 and 2007 – which led to a $ 3 Billion fine for GSK – there are black box warnings about suicide – there is a $120,000 RxISK Prize
But it makes no difference. You need to check out what has already been done before reinventing a wheel that doesn’t turn
D
Menke de Groot says
I have read nearly all books of Peter Gøtzsche, Dick Bijl and David Healy. All three men got fired in the end because of their tireless efforts to do something about the malpractices of Big Pharma regarding SSRI’s (and many other drugs).
Yesterday I finished “Let them eat Prozac” – before that I finished ALL books of Gøtzsche and Bijl (since 2006, when my brother died).
Reason why I’ve read nearly all works by mentioned autors? Well, my brother died as a direct result of the side-affects of clomipramine (not a SSRI by the way).
People still go on mass killings (my brother did not by the way). And killing the ones they love most. https://www.breakingnews.ie/ireland/deirdre-morley-believed-it-was-morally-right-to-smother-three-children-1129443.html
It makes no difference. My brothers life made no difference. The works of Gøtzsche, Bijl and Healy seem to make no difference. They only get fired. And Big Pharma is getting larger and larger and gaining more and more influence.
However: I greatly admire the courage of these three men and hope they do continue their tireless efforts against these, as Gøtzsche calls it, Mafia practices.
Anon says
Protest outside parliament so that it receives wider publicity.
annie says
The ‘Hunger’ Games …
I was already on hunger strike from being stricken from Seroxat, animosity and jibes from my doctor did not increase my weight or allow for any one-to-one disclosure.
When this attitude did not let up, some sinister overtones became apparent.
At some point I became aware that if I didn’t change course in multiples of visits to the surgery, that things could take a nasty turn for the worse. I felt on sticky ground, no one was on my side. I became afraid that my daughter who was nine was being used as a pawn in this tug-of-war where the doctor could cause severe harm to my family.
My two years of withdrawals were fraught with danger and my senses were now on high alert.
The ominous undertones were quite explicit.
I was made to feel a fraud.
Cool, clear, well-written statements of facts elicited curt and dismissive conclusions.
The Highways and the Byways wrote me off.
Thank god for lawyers?
Clinical Director: ‘Litigation is a private matter upon which I cannot comment”..
I learned the more you push it, the harder the pushback will become.
Bold as their brass, there was to be no salvation.
Two Global cases – US and Australia – have caught the headlines :
AntiDepAware Retweeted
Leonie @leoniefen
Family of Chris Cornell settles with doctor over his death
https://www.irishexaminer.com/lifestyle/celebrity/arid-40283504.html
Coroner’s investigators in Michigan ruled Cornell’s death a suicide by hanging. Tests showed the presence of lorazepam, better known by its brand name Ativan, in Cornell’s system along with barbiturates and the anti-opioid drug naloxone, but did not cite them as a factor in his death.
The lawsuit said Koblin and his Beverly Hills, California, office “negligently and repeatedly” prescribed “dangerous mind-altering controlled substances to Chris Cornell which impaired Mr Cornell’s cognition, clouded his judgment, and caused him to engage in dangerous impulsive behaviours that he was unable to control, costing him his life”.
recovery&renewal Retweeted
ILL-INFORMED @informed_ill
22-year-old IsaRac Reis died in August 2019. He was taking 10 different meds – as prescribed, including 2 opioids, 2 benzodiazepines, an antipsychotic, 2 antidepressants & pregabalin. Doctors failed to warn Isaac of the risks.
Watch the full story
https://www.abc.net.au/7.30/calls-to-improve-warnings-about-the-deadly-risks/13330996
“As Good as it Gets”
All the world’s a stage … And all the men and women merely players; …
Gino says
Some Italian sued pharma and just lately won 600 000€ for impulsive spending from anti-parkinson drugs. The whole case was based on the notion that the side effect was not mentioned in a leaflet when he took the drug. The side effect is not objectively verifiable. Not based upon clinical trials data but anecdotal evidence such as case report series and spontaneous reporting to the market regulator. You can’t prove causality link, just possibility of it. The verdict stand appeal even when pharma made justified claims that Parkinson disease affect cognition and hence risk amassment.
It does struck me – do we really need to wait for some medical breakthrough which proves PSSD 100%, or official recognition as a medical disease ? Or we just lacking the COURAGE to sue hell of the pharma, because after EMA decision all the needed elements are already here, factually similar to the case above ?
Even when the sloppy argument “it’s depression” would be used, there are ways to defend against it ( lack of symptoms complaints before treatment, cases with SSRI prescribed for something else than mental disease, or medical assessment, that there is no current mood disorder but unexplainable symptoms persist ).
Dr. David Healy says
This case does offer a precedent – particularly for Italians – there is now very clear evidence of suicides and people who have sought medical assistance in dying.
It might be worth approaching the lawyers who took this case
DH
susanne says
Intended for healthcare professionals
European regulators urged to crack down on missing clinical trial results
BMJ 2021; 373 doi: https://doi.org/10.1136/bmj.n1169 (Published 06 May 2021)
Gareth Iacobucci
Author affiliations
Transparency campaigners have urged national medicines regulators across Europe to take action to reduce the high number of unreported clinical trials.
An open letter1 to heads of medicines agencies signed by 18 organisations (see box), sent on 6 May, highlights that over 4000 drug trials run in the European Union (almost 30%) are currently in violation of EU transparency rules, which state that results have to be made public within 12 months.
The unpublished data “creates gaps in the medical evidence base that have significant potential to harm European patients, taxpayers, and public health,” warns the letter, coordinated by campaigning organisation TranspariMED.
National regulators within EU member states are responsible for ensuring that drug companies, …the rest is available by subscription only but if it can be shown that they deliberately withheld info which has led to a harm or death or even obstucted the right to informed consent – could that be worked in?
annie says
Auntie is in retirement…
http://www.auntiepsychiatry.com/Auntie%20Psychiatry.html
the giant anteater of honest psychiatry …
A favourite
http://www.auntiepsychiatry.com/Auntie%20Psychiatry.html#aka
Ernie said “have you got the scrolls?”
Eric said “no, I always walk this way””
Give her a scroll …
Justin Oxley says
I have my fingers crossed something like this doesn’t happen with the ssri prescriptions.
https://youtu.be/xR3YvrNpssM
Daniel says
Justin, are you still working on a biothesimeter? How far have you come?
Justin Oxley says
The compact bothesiometer still remains largely in the realm of Theoretical Physics. I know how to do it and started to put a proposal together, however given my current variable health and the fact that I don’t like to make promises I cannot deliver on it remains an idea. I know how to do it, it is just my withdrawals condition tends to make my mind unfocused and distracted so I lack the confidence in saying I could produce it, I don’t like to make promises I cannot deliver on. I’m dissociative and off with the faires quite alot I have no control over that state. I had some guys turn up wanting the car they took it for £50 I need to send the form off to the dvla. The alternator is knackered battery dead. I should have sold it to Chris a few doors up as he told me he would have given me £200 for it. My head was playing up I tend to take the path of least resistance. I’m not sure how I can guarantee that I can produce the biothesiometer idea. There is no cheap penlight sized biothesiometer on the market so I thought it might sell. I’m struggling to think clearly just shopping in the local grocery store, this pervades every area of my life I can’t just snap out of it, it doesn’t work like that.
Daniel says
If you believe it will be important for progress towards a cure, and if you later feel more able, and you believe you can do it: you could consider raising funds and delegating a lot of the work to others, they did a fundraising for robert melcangi
https://it.gofundme.com/f/27l8qmes5c?utm_campaign=p_cp_url&utm_medium=os&utm_source=customer
and it reached its initial target of 10k within a matter of weeks, though inflow of donations seems slower at this point.
Justin Oxley says
To my mind it seems like the most accessible and therefore the most logical direction to go in towards finding cures. I am not sure how the approach might be applied to produce a successful result but a very compact biothesiometer you could send to people in a jiffy bag in the post seems not impossible. I think a doctors penlight sized biothesiometer that is cheap and effective could be produced. It makes sense to me however I am afflicted by withdrawals which means I find it difficult to be on the ball all of the time. So logically it would make sense to let me design a prototype at my own pace
L says
Since 1992, 12 May has been International Awareness Day for Chronic Immunological and Neurological Diseases (CIND), which includes fibromyalgia.
Note that the list of diseases also includes others that are generally considered ‘controversial’: https://www.may12th.org/illnesses/
A couple of Italian fibromyalgia associations have involved municipalities that will support them with various awareness-raising initiatives (brochures and campaigns).
I wonder if there would be a way and a sense to get on that list and/or have the possibility, like fibromyalgia, to have a kind of international day of PSSD / post-SSRI/SNRI syndromes / post psychotropic drug syndromes / persistent syndromes after psychotropic drugs, finasteride and isotretinoin.
Justin Oxley says
I just picked up my liquid Fluoxetine from Boots Chemist up at Bush Fair which is the local shopping center near me. I won’t go into the history of Harlow and the Town Planning your eyes may begin to resent me you can check out any time you want but you can never leave. Anyway the fella who works in Boots told me to be careful stopping Fluoxetine, no shit sherlock I nearly said but I didn’t. I could have delivered a lecture but I didn’t have the time, I said look up David Healy and RxISK if you get bored.
I bumped into Dorothy who is a friend of my old lady neighbour Patricia coming home she had covid19 around Christmas time so was quite poorly for a week or so but remained at home. She now gets the post virus symtoms like brain fog, headaches and stuff so I told her to look into supplements as I think they would help.
I’m like some sort of iatrogenically damaged maverick street doctor fella. I got back home felt quite overwhelmed had my special coffee and went for a lie down.
Justin Oxley says
Think different, but not too different probably. I know Apple with its HQ on Infinite Loop drive treats some of its workers quite unreasonably in the sweatshops. Some of those workers kill themselves the factory job is just so unreasonable it’s a bit like Amazon over promising its customers and transferring the demands onto their ragged overworked staff, not many of them have a picture of Jeff Bezos hanging in their hallways at home. No you can’t have a toilet break that is a waste of company time. The high tech dark stanic mills of today are quite dreadful places to work. They have good ventilation at the Apple HQ provided by a place I used to work.
https://en.m.wikipedia.org/wiki/Think_different
susanne says
Let’s get the numbers.
PSSD Canada is proud to announce that in 2021 we are partnering with Queen’s University Sexual Health Research Lab (https://www.sexlab.ca/) to embark on a project to gather data on Post-SSRI/SNRI Sexual Dysfunction. We are designing an online survey and will promote it through all avenues of media for the purpose of getting an estimate on how many people suffer from PSSD. The study will commence in May of this year.
To properly research this disorder we need an understanding of the scope of the problem. That’s where you can help! Sign up for the study and share this page on social media. You can also follow us on Twitter at @PSSDCanada https://twitter.com/PSSDCanada
We are also recruiting Canadian volunteers to take part in interviews for a qualitative study from University of Ottawa investigating the lived experience of people with PSSD. If you are a Canadian citizen willing to give an interview for the study, please get in touch.
Interested in taking part?
Email pssdcanada@gmail.com
Your contact information will remain confidentia
susanne says
UK PSSD Association
Open Menu
PFS PSSD PAS Federation Formed
Jan 3
We have now formed PFS / PSSD / PAS federation with PFS Global Research, The German PSSD Association, PSSD Canada and the Italian PSSD Association. We are planning to create an overarching hub web page to show everyone what we’re doing, what the latest news is and how you can help.
We are coordinating activities together so that we can maximise the number of people participating and therefore the impact. We have other online platforms we are using to plan and manage work.
If anyone is ready to take an ACTIVE role in driving forward positive change in raising awareness, fundraising, supporting initiatives to encourage research in 2021, please contact us.
Next
PSSD Research to Commence in 2021
UK PSSD Association
Contact: pssd-uk@protonmail.com
Justin Oxley says
My main feeling about all this is that mitigating adverse reactions like akathesia and delivering clear advice on supplements that mitigate withdrawals symptoms has to be a high priority task.
Victor says
Hi,
Are you aware of this “solution” ?
Has anyone tried? Im going to try it.
I ll update with results.
susanne says
Hi Victor – have I mised something? which ‘solution’ please?
Justin Oxley says
There is alot going on in this direction which should improve the reliability of Healthcare in the longer term. You will still need people to be GPS but this sort of thing will help take alot of the uncertainty out of prescription. It doesn’t always make sense to.prescribe a nuclear powered ssri for everyone who comes in feeling a bit nervous or suffering grief. The last thing you want is to get yourself hooked on Heroin when some Lemon Balm will do the job perfectly well.
https://www.amazon.co.uk/gp/product/1484237986/ref=pe_19525971_591231741_em_1p_2_im
mary H says
Justin, I would say that it NEVER makes sense “to prescribe a …….SSRI for everyone feeling a bit nervous” as you say. I reckon that most of the problems with psychotic drugs lie in the fact that doctors seem deaf /blind to their power and just hand them out like sweets As for someone suffering grief, I think a prescription for an SSRI is the last thing that they need! A listening ear – yes, from family, friends and DOCTOR. Reassurance that their feelings are “natural in the circumstances” and to be accepted and given time for all emotions to work through, is of far greater benefit than a pack of pills which blot out emotions. The ‘grief’ will remain and resurface at a later date when the pills run out – far better to confront the grief and work through it.
Justin Oxley says
I have seen they are still trying hard to pin down the mechanisms behind the Mpemba Effect. I ran the experiments quite a while back at UCL but still nobody knows. It’s quite counter intuitive with hot water freezing faster than cold, an error in Newtons law of cooling ? Something we don’t understand still.
https://youtu.be/Din_eWjJWe0
Justin Oxley says
Essential Oils can help with withdrawals I have a big collection , my house is a silly place.
I read one womans story about her issues with her partner who snored like a foghorn. She would end up awake and poking him because she couldn’t sleep, I snore like a foghorn but I am single and like it that way, I don’t want to be attacked whilst I am sleeping. Anyway this woman discovered that using Eucalyptus oil and Thyme oil in a diffuser stopped her husband snoring which made her happy as she could sleep properly. This must be quite a common problem this is free advice for those who suffer the torment of a partner who snores like a foghorn.
My essential oils include Sweet Orange, Melissa lemon balm, Rosemary, Ylang Ylang, Bergamot, Vetiver, Cllary Sage, Jasmine, Saddleworth, Thyme and others they seem to help me feel alot better. I have everything ready for the hyperbolic tapering procedure. I’ve done all the calculations to make it run as smoothly as possible. I’ll probably still be quite grumpy some days I’ll just go outside and shout at traffic or something.
Justin Oxley says
Withdrawals can make dealing with things the environment throws at you feel a little bit unusual and out of tune alot of feel out of whack. Presumably this is due to the disruption to peripheral sensory systems. I don’t know exactly how it all works I mainly just deal with computers. I can’t plug a logic analyser into my brain and debug it.
https://youtu.be/felRdhZ8j0Y
Justin Oxley says
Before I was thrown overboard due to ssri withdrawals I used to be fairly successful in acquiring employment working on embedded systems. Unfortunately the effects of the ssris pulled the rug out from under my feet and life became rather difficult. It didn’t help when the DWP kept on sanctioning me for not.following the rules, but the system put me in a double bind catch-22 situation where I could not honour a contract if I was iatrogenically sick. It just adds insult to injury when they punish you for trusting a medicine, my GP didn’t know how to handle it and would sometimes write me a sick note but often refused. It became and exasperating process that went nowhere. I have been links to RxISK on my Universal Credit Journal as I felt I was being constantly steamrollered in my conversations with DWP workers, the lights were on but nobody was at home. Now they appear to have.got the message and I am paid enough to live on each month without having to turn up and tell them the same story over and over again. The penny has finally dropped at their end. I usually design this sort of stuff but for some reason it becomes more difficult if you have a drug addiction problem. I am more of an Inbedded system these days.
https://en.m.wikipedia.org/wiki/Embedded_system
susanne says
It’s almost impossible to manage without the net which can be prohibitavely expensive for campaigners or to get hold of info. This looks a useful offer
Log in Join NewsAll news Technology Broadband, mobile & TV services BT to offer half price fibre broadband to households on benefits Some 4.6million households are likely to be eligible for the deal By Yvette Fletcher3 May 2021 Share on FacebookShare on TwitterShare by email BT, the UK’s biggest broadband provider, has announced it will offer new social tariffs for its fibre broadband. BT’s Home Essentials packages will be available to people on Universal Credit and certain other means-tested benefits. Home Essentials will include both fibre broadband and calls for as little as £15 a month – around half the price of BT’s standard fibre package. BT estimates that as many as 4.6 million households could benefit from the deal. The announcement follows research from Ofcom, the telecoms regulator, which found that 19% of UK households struggle to afford at least one of their telecoms services. Rocio Concha, Which? Director of Policy and Advocacy said: ‘Access to a good broadband connection is vital for everyday life, however affordability can be an issue for some consumers, so it is good BT that has introduced this new tariff offering decent connection speeds at lower prices to help get more people online. ‘BT must now ensure that it proactively engages with those who are eligible so they are aware and can take advantage of these new tariffs.’ Find out which providers impressed the most in our regular survey of the UK’s best and worst broadband providers. What is BT’s Home Essentials deal? Home Essentials is a low cost fibre broadband deal that is available to customers receiving government support, including Universal Credit and legacy benefits such as the Guarantee Credit element of Pension Credit, Jobseeker’s Allowance, Income Support or Employment and Support Allowance. Eligible customers can choose between: £15 a month Average broadband speed of 36Mbps 700 minutes of phone calls £20 a month Average broadband speed of 67Mbps Unlimited phone calls The lowest priced equivalent standard BT broadband package costs £32.99 a month with an additional £15 for unlimited calls.
Read more: https://www.which.co.uk/news/2021/05/bt-to-offer-half-price-fibre-broadband-to-households-on-benefits/ – Which?
Justin Oxley says
I don’t know what is worth what, I am bad at understanding economics. I think a vast amount of time is spent by people in advertising trying to sell people stupid stuff they don’t even need. Marketing and advertising people spend alot of time telling people why they need something, you have to tell people why they need this thing you have invented.
ANON says
There are so many professionals out there that are qualified spin doctors.
It is costing peoples lives.
They are no different to some politian’s.
Weaving their web of lies.
Some of the meds they use mimic health conditions and they manipulate/distort information to make you believe/think it is a disease.
Some doctors know what is going on however, until they get caught out, they will continue to commit random acts of murder. Some of the ones who work underneath them, are no better!
It like they have an oath unto thy selves: HEAR, SPEAK AND SEE NO EVIL! ~ It is the name of the game. Peoples lives are like a game to some.
With all honesty: Who would want to be part of such a corrupt system that has no moral conscience or integrity? There just has to be another way!
With the current health systems collapsing, people should be speaking up about some dodgy doctors/other health care professionals/dodgy medicines and impoverished quality of health care standards.
They sweep it all under the carpet because if the information were to spread to the wider community, people would be absolutely horrified!
ANON says
Daniel
May 7, 2021 at 10:55 am
Thank you for being the light and being a seer.
We need more people like you in this universe.
Thank you kindly for your insightful wisdom and in-depth knowledge.
Namaste