RxISK Reformation Day

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October 31, 2017 | 31 Comments

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  1. Before Martin Luther’s work on translating the Gospels from Latin into German, so that everybody could at last read and interpret them as they thought fit, the priests had been able to blind them with science, putting their own limitations on their interpretations of what Christ had taught, and frightening people into doing what THEY wanted. This is surely exactly what some doctors and, at the top of the pile, Big Pharma, are doing now.

    ‘If you don’t take this medication, just as I tell you, and you dare to question it, then you will never get better. I am, effectively, God, but I am not going to put it in those words, I am just going to behave as though I am.’

    Well, no. Not any more. We have RxISK reports, we have Google, we have each other. We can read, mark and learn. The perceived power of the tin gods is fading by the minute as our groundswell gathers. And how ever much Big Pharma, the BMJ, and the majority of doctors keep singing to the old hymn tune, they will be outvoted in the end.

    Don’t forget folks too, our collective effort of lighting a candle each on Thursday night 2nd November at 10pm to stand together for All Souls’ Night, to follow the inspirational words of Laurie Oakley (see on Twitter) and continue what we started this time last year. Just remember where we were then, and where we are now. Yes, much work left to do. Let’s get on with it everybody…..

  2. To keep you up to date on contacts – People in poverty tend to receive more prescription drugs so have contacted ‘Health Poverty Action’ last week – so early days – if only those we contact and who are not supportive would send a ‘nono’ with a reason – but very few do! The reason would highlight where more action is needed. eg is it -my organisation is against this/hasn’t sanctioned it /don’t know enough about it etc . Am going to ask those I contact in future if they can give some feedback. Also as an outside chance to Dr Ellen Grant who is a tough campaigner who writes about the adverse effects of HRT but obviously knows a lot about physical systems – it’s worth a punt sometimes as people have networks they may share info with or feel sympathetic enough to donate.

  3. Picked up this news from Twitter about tomorrow night’s episode of “Trust Me, I’m A Doctor” on BBC-2:

    https://twitter.com/joannamoncrieff/status/925281662732242945

    Will there be a “critical debate” — or just a bit of singing the praises of yoga and gardening, with pills to be reserved for “serious depression”? (Even that would be kind of nice, though hardly worth staying home to watch.) Hopefully my British friends here will let me know.

    And thanks for the parallels to 15th century Germany, Mary! Funny thing–I know more than a few doctors who still start babbling in Latin when they want you to stop asking questions and do as you’re told.

    Got a client who stepped in a ditch at work and twisted the living hell out of his ankle. Insurance company doctor says they will not pay as his real trouble is “osteochondritis dissecans.” Sounds like you might as well go home & prepare to die — found out it’s basically cracks in the cartilege, related to interference with blood supply. Might be related to minor injuries, but the cause is unknown, basically … or excuse me, Idiopathic.

    • Hi Joanna -Unfortunately Simon Wessley got another chance to be on the telly. Which surely must be annoying for the present president of psychiatrists as it looks as though she is incapable of handling media presentations. The same thing happens when his wife Clare Gerada takes to the stage as past chair of the college of GPs instead of the present one.To be fair Joana Montcrieff made some good points about the needless use of anti depressants rather than to concentrate on helping to solve the reasons behind someone’s depression. J M didn’t unfortunately describe any alternatives. She was described as being a critical psychiatrist from UCL but not a member of the network so gave impression it was just her own opinion. Her practice is not shared by all at UCL so once again it just by the way highlighted how people can be subjected to very different practice according to the psychiatrist’s personal beliefs. And very few will be told what they are when being referred. Very cleverly though Wesley came on after her and was described as the past president of psychiatrists which may have seemed to give him more authority. His statements were outrageously disingenuous, eg he gave the impression there were no serious issues around taking them and that any adverse effects would be mild and soon pass off. Made no mention of withdrawal or serious adverse effects so that people could be more aware of them . The presenter then added his own two pennorth by saying he would take anti depressants himself. The psychiatrist on the team was not asked. He was not exactly representative of the psychiatrist most people encounter in clinics as he strode around being friendly and happy – he was an engaging character – would have been more useful to see him doing a consultation though. The programme overall was presented as serious but jolly entertainment , music, fairgrounds, happy happy you will know how it goes ,because the plebs musn’t get bored and switch off. You were right about the yoga gardening mindfulness all shoved into the hour – with some snips about new research into schizophrenia. Too much in support of the government’s drive to encourage ‘well being’ and self help to nip mental problems in the bud early – nothing whatsoever about the poverty which is driving people into depression and suicide. It was overall depressing because of Wesley’s contribution.

      • Neither comfortable, nor convincing documentary to watch Susanne.

        Was the bias in favour of S.W. after J.M. really as palpable as I perceived?

        Re SSRIs safe and effective promotion: –

        S.W. “” —-there’s lots of areas in medicine where we know something works – but we don’t know how”.
        –“We knew antibiotics saved lives GENERATIONS before we worked out how they do it”.

        But – See Following Reference: –

        Mechanism of Action of Penicillin. Joshua Lederberg.
        Journal of Microbiology. Vol.73. No 1. p 114. January 1957.
        (Accepted for Publication October 1956).

        “The mechanism whereby penicillin exerts its cytotoxic effect remains obscure” – – – “However there has been a concordance by many workers —-”
        These observations support the argument that penicillin inhibits cell wall synthesis, and thereby provokes osmotic fragility in the excoriated bacterium”.

        Penicillin does indeed disrupt the bacterial cell wall.

        The first limited availability of penicillin was during 1942/43. Saved many lives on D-Day June 6th 1944.

        Does some 12 to 13 years really amount to: –
        “Generations before we worked out how they do it”? —

        – – Or might this have been well rehearsed propaganda rather than a valid, expert medical opinion as presented by J.M.?

          • Wessely responds ..

            Simon Wessely‏ @WesselyS 53m53 minutes ago

            Replying to @AntiDepAware @BBCTrustMe @rcpsych

            Did you actually watch the programme you are commenting on and listen to what I said – that we are not sure how antidepressants work?

            12:31 AM – 3 Nov 2017

            https://twitter.com/WesselyS/status/926351011400310784

            James Moore‏ @jf_moore Nov 1

            Replying to @rcpsych @BBC

            Bravo @joannamoncrieff for speaking out about the concerns we should all have with rocketing antidepressant prescribing.

          • Annie – just read your link – S W admitting on twitter that ‘we don’t know how anti depressants work’ gives an impression of open minded honest thinking….but truth not propaganda by the college is what’s needed . He should have added an admittance that nothing is being done for the harms being caused. Does he manage his own twitter comments – seems he would have time for nothing else if he does. as someone else pointed out SW is all over the place with the help of the BBC, Wonder who the contacts are – perhaps they will be involved in yet another scandal re biased reporting or cover ups one day.

  4. I sent in a letter about six months ago to my ex GP who was one of the doctors along with my ex psychiatrist who first prescribed me citalopram that caused my PSSD.

    In the letter i explained that i had developed PSSD, and provided evidence that PSSD exists by sending in various Rxisk pages on PSSD, and i highlighted the studies in highlighters, so that the doctor could see other doctors and scientists supported the idea that PSSD exists etc. I also made a strong case that i was sure my sexual problems were caused by citalopram and nothing else.

    I explained how much distress the PSSD had caused me, and how it had gone on for almost a decade, and had often left me feeling suicidal.

    I was also almost apologetic in tone throughout the letter, explaining i wasnt angry at the doctor, and that i didnt blame him for me developing PSSD, but that i was just trying to raise awareness among doctors about the condition. (In truth i was quite angry at the doctor, but felt he was more likely to become defensive if the letter had an angry tone).

    At the end of the letter i asked the GP to write back to me, and i left my email and postal address. I also asked him to share the Rxisk pages about PSSD among his work colleagues to help raise awareness about PSSD.

    Guess what happened after spending hours preparing the letter etc, and sending it in.

    Nothing.

    Nothing happened at all. No email. No letter back saying he was sorry i had suffered for a decade with this condition. No acknowledgement at all even of the letter, let alone any type of apology for the decade of misery i have suffered.

    Nothing.

    • This is exactly the attitude they have. About as much respect for the people they’ve harmed and whole lives they’ve ruined as Ian Brady and Myra Hindley (the moor murderers). But with the respect and prestige a nazi doctor had working and not caring about their victims.

      Not even a response or acknowledgement.

      This is exactly the same experience I have found, and still do find. My psychiatrist was supposed to have joint set up ‘the critical psychiatry network’, by the way he has dismissed, been unhelpful and actively societally ridiculed me to cover up PSSD (and refused to warn future people) he’s more like part of the Network For Psychiatry Apologetics Network.

      All the doctors and gp’s and everywhere else is just as bad and degrading. I get so angry every time I go to the place that effectively murdered my life, and the disdain and waveful dismissal they have for the lives like mine they have destroyed with their persistent drug all the mentally unyheigenic in the community with toxic drugs and theres nothing you can do about it now program. They actually ruined my life and won’t even apologize or record it on paper (that they record everything on).

      It’s very hard to be the peaceful one in all this as the cornered rat, ruining my life is no small feat. I know how the caring would turn that quickly if I had a knife over their testicles. But a childhood lifetime of passifying psychiatry neuro transmission disrupter drugs probably has something to do with me not doing that.

      • Daryl.they do a lot of writing and attending conferences and blogging – but Joanna Montcrieff one of the prominent names is too busy to even answer comments on her blog- …she refused to give one person in enormous distress even the name of a psychiatrist from the so called critical psychiatry network to try and get a referral – in fact put them off even trying I agree with your opinion. The network gives the impression they advocate for a different relationship and practice but are a very exclusive bunch. Who was the one you had such a bad experience with?

  5. Spruce – so much for the empathy – if you even had the energy to take it further with that particular group it would probably be claimed that your correspondence had not been received or files had been ‘lost’, You probably know as much as anyone by now but a copy of the correspondence should be on file with new GPs /psychiatrists but I guess debatable whether it’s useful to include the names of those you contacted originally. They can bias things openly or covertly. I think it is legal by the way not only to share the names of helpful doctors but those who have not had up to date knowledge or understanding of adverse effects. To put it at it’s most diplomatic. This is simply saying that they have not enough expertise in this particular problem not that they are bad doctors altogether (although some are). So it does not damage their reputation. People in local areas are advised to ask around for a ‘good doctor’ just how that works out for anyone is debatable – the public needs a register of those with particular experience ,not just an ‘interest’ though that would be a start, and the ability to get a referral. dream on at the moment. The official sites used to record experiences of GPs using their own feedback sites are farcical – but may be worth seeing if they can be recorded on the site. Ditto ‘patients opinion.if anyone feels like trying that it is another thing that needs to weighed up ie whether the reaction from the surgery is likely to be ‘negative’ if there is nowhere else to register. Treading on Eggshells….for fear of another human being’s power to cause harm and distress either physically through drugs or psychologically through ignorance …how does that fit in with a modern health service which is even promoting ‘partnership’???.

  6. In its own way, I hope that this comment links up with Spruce, Daryl and Susanne’s comments.
    Shane and I are interested in setting up a Withdrawal from Medication peer support group. To this end, we have prepared a questionnaire to assess the local need and support for such a group. We feel that one of the ways of sharing these out would be by visiting our GP surgery – with permission, of course. On Friday, I emailed the 5 co-ordinators who oversee each patient group there. I explained who we were and which Team we are allocated to along with a short explanation of our aim. To date I’ve received one reply.
    Shocking enough that they couldn’t all spare the time to quickly reply, more shocking still is the reason (in my opinion) why one has responded. She co-ordinates the group of which Shane is one of the patients. In the email, I had put an extra bit in hers about Shane’s withdrawal support which includes regular updates and David’s connection there and with Rxisk. She could, therefore, hardly deny the existence of patients with withdrawal problems within her group could she?
    To be fair, she didn’t make any mention of such information – her reply was short but very encouraging, it read ‘That sounds really good, I wish you lots of luck with it. I will forward the email to our management team who will contact you with their thoughts.’ Is she passing the buck? I don’t know. As you might have guessed – they are still thinking about it!
    As the three of you say, it’s not the lack of agreement that hurts is it – it’s the being totally ignored. I can work with a negative answer but no reply just brings everything to a close doesn’t it, that being the whole idea behind their silence I fear. They know that, should they respond negatively, we will push our positivity further.
    I can see a choice of two ways forward in this present battle:-
    . they, who have not responded, have left a really negative image of the entire group which stays with me
    or
    . the one who has responded has shown her own strength of spirit and stood up for what SHE believes, maybe against the general opinion of the whole group.
    I shall choose the second option and, failing a positive outcome from the ‘management’ if it ever appears, shall work with the positive one and see where she, alone, can lead us.

  7. I am not going to be ignored. I will be chasing up about that letter to the GP when i return to the UK, and i will be getting a response to my letter one way or the other.

    If the doctor can numb my genitals and wipe out my sexuality for 10 years, nearly driving me to suicide in the process, he can at least have the decency to respond to my letter.

    I have also not finished with another doctors surgery which have been very dismissive towards me about PSSD. I will be renewing my efforts about that on my return too.

    I suffer every single day. What happened to me was a serious human rights abuse. Why should i just roll over and stay quiet.

  8. This month of November marks 10 years of me having PSSD.

    I first took citalopram in November of 2007. Ever since that first tablet my sex drive was completely wiped, my genitals went numb, and my orgasms became almost pleasureless.

    10 years.

    10 whole years.

    A whole decade.

    And what do i get to celebrate after this 10 years of misery, i get thrown into a massive wave where my genitals feel as numb as ever. They actually ache with numbness.

    I think i am going to have to suggest we all toast to my 10 years of SSRI induced castration.

  9. I hope and pray with all my heart, that someday, Spruce, Daryl and many others, who have not had their condition(s) validated, somehow receive that acknowledgement that we have all been waiting for.
    Many sufferers, deserve better treatment and I am quite appalled that in this day and age, people who have had their lives ruined, get treated in this uncivil fashion.
    You are not alone.
    For all that we have been through, today, tomorrow or whatever may come, just don’t lose sight of why we are here.
    We have stood in front of that tank, over and over again and have courageously confronted them head on.
    We have had no choice but to ‘rattle a few cages’ and show them that we are not afraid to confront issues that have been swept under the carpet for way too long.
    We are just defending ourselves and rightfully require acknowledgement, respect, understanding and compassion for what we have been through ~ I do not think we are asking for much!
    The lies, cover-up’s, mocking and ignoring us, only reminds a few that we can see beyond all the façade.
    It is time that many ‘man up’ and be honest and brave, by acknowledging the ‘wrongdoings ‘of the past.
    How on earth are we going to learn from past/future mistakes, if we do not acknowledge them?
    Many have had to endure a difficult journey, through no fault of their own and I am glad RXISK gathers the souls to bring hope, light and comfort to each other.
    Remember, out of adversity comes opportunity ~ this I believe.

    • It is not Joanna Moncrieff herself it is just someone else that left the same uni that it was set up from originally in Leeds or something he said he was part of those people so kind of joint set it up or something, that is the only un-insulting conversation we had (I happened to bring in a book once in my hand). I will not reveal identities even though, I am not on a vengeance mission or want to be angry I just want my life back, and some dignity acknowledgement back too instead of mockery and further difficulty and insult would go a long way to stop creating trauma.

      Even the Nazi Medical Proffesionals recorded their dam crimes. These ones will not even write “Daryl believes the drugs caused him persistent damage like sexual dysfunction”. It is not like I have not been saying it for the last 7+ years. No records for me or any of the other dead mental patients that crunched their psychiatric drug poisons. All the crimes have been removed from history like they never even existed 1984 style. Why won’t they write it when we ask them too, I am not even asking them to agree just to state thats what I believe.

      Im applying for marathons as we speak

  10. The one in Germany not enough people have gone through the doctors and handed the forms back we need for entry (although enough entered to say they would), I don’t know if the reason is lack of motivation or difficulty dealing with these doctors (also have to fulfill seemingly impossible task of being given PSSD without a diagnosis of ‘depression’ and other ‘mental health diagnosis’). The German study will not happen if we do not meet this criteria, it is to attempt to confirm the existence of “PSSD” as I understand. Feel free to ask about it on PSSDforum.

    The Milan study will I think be doing testing and from what I understood it is likely to go ahead.

    Thanks Susanne

    I wrote another article on medium mentioning our campaign called
    psychiatric drugs are now used to chemically castrate paedophiles
    https://medium.com/@darylbrownm/psychiatric-drugs-are-now-used-to-chemically-castrate-paedophiles-d305de438a37

    The more claps it gets (you can clap as many times as you like) the more likely chance it has to get seen.

    Also just seen there was a Mad In America Podcast interview just done with Dr. David Healy, just about to listen. The link is on the prize page.

  11. Daryl. I was wondering what the study in Milan entails, and what it hopes to achieve etc? Do you know?

    If i remember correctly the German study in Ulm is MRI scanning the brains of 40 people who have taken SSRI’s, 20 who developed PSSD, and 20 who didn’t, to see if there are any structural changes between people who developed PSSD and those that didn’t etc.

    You say it hopes to prove PSSD exists. Is this correct?

    • Yeah that sounds right for the German study, to prove PSSD exists. The Milan Study I am not too sure, might have to ask someone on pssdforum but from recollections studying the neurosterioidal changes that occur in PSSD rats or something being one of the things? Depending on money maybe what else will happen with it…

      There is a thread on it I think.

  12. Has reply from Yellow Card saying info requested on specific adverse effects of anti depressants is now in public domain results up to Aug 2017. Don’t get put off if link unavailable, it is intermittent – had further help from ‘What do they know’ who run Freedom of Information site and thanks to them also and Yellow Card was helpful. There is a lot of breakdown of data eg by age; gender; by patients/carers/profession and reasons for reporting eg psychiatric;gastric. Also suicides and deaths. The info is very interesting. What is needed is to breakdown these categories even further and to give info on long term adverse effects – there is a link to make it easy to report . I tried three different drugs and had to get the alternative name for one – frankly everybody should be given a copy before taking them. I can’t give the results I looked at because the MHRA states that their published info should not be passed on unless the warning at the bottom of the page on adverse reactions is read. Seems sensible so either go through Yellow Card site or directly to- MHRA Interactive Drug Analysis Profile. By the way another problem people report is that symptoms are worse if they are given another named brand than the one they are used to – and this is not taken seriously ……..yet again

  13. I find your last sentence interesting Susanne. Maybe we’re the lucky ones but our local pharmacy will not issue a different brand without discussion with the person concerned – in other words, they take the problem as being real. My experience of this has been with Quetiapine not with an antidepressant. Fairly recently, when Depakote was cleared from the shelves due to the Valproate in pregnancy scare, Shane was transferred to Epilim liquid. Obviously, this was not just a brand change but, even so, another member of the Valproate family. This time there was no check made by the pharmacist, of course, as what was given was as per the script. The reaction in Shane to this change was marked – especially in his mood and he discontinued its use after three doses. I suspect the colouring was to blame but that is just my thought on the matter. Taking the patient’s word when making these changes seems to me to be extremely important. In Shane’s case, luckily, the chemist is still able to source enough Depakote to fulfil his need although the shelves remain empty so far.

  14. I have found the same ignorance from doctors in my area about the harm they caused me. It’s inhumane the hell I’ve been through. I don’t know about writing them a letter to get a response because being ignored would infuriate me even more. I will never let this go but I want to forget it. My hatred for the med community is too big . A large survivor network needs to be established , one that is very visible for all to see. Going through the Doctors is pointless for those already harmed. It’s too much.

  15. Stitch; i have often harboured murderous thoughts to a few horrible doctors who not only caused my suffering, but then ignored and/ or basically laughed in my face when i tried to explain to them what has happened to me because of these drugs.

    I have met a few really arrogant doctors over the years, some that have made my blood boil at times.

    I would never act on these thoughts, but i have often thought that if i were to, that i wouldn’t have much to lose, seeing that this PSSD might end up being a life sentance for me anyway.

    • Spruce ) I have had those same thoughts and feelings and for insurance purposes had to see a few doctors. I will never do it again as I fear one day I could snap . At the very least I fear I could assault one of them. So for me staying clear is my only option.

      But I pray for your pssd to improve and I hope one day that it does.

  16. I’ve just discovered this site, and am encouraged by the fact that a lot of those commenting appear to be UK based (as I am).

    I was prescribed “heart drugs” following a life-threatening illness diagnosed as “heart failure”. The drugs saved my life, but practically every one causes chemical castration, and I don’t believe this is a coincidence. I’m convinced it’s intentional.

    The drugs listing “erectile dysfunction” as a “side” effect include

    Atorvastatin
    Bisoprolol
    Candesartan
    Digoxin
    Furosemide
    Ramipril
    Spironolactone
    Warfarin

    Also, Bisprolol, Digoxin, Furosemide, Ramipril, Spironolactone and Warfarin list “fainting” among their “side” effects, but whenever I ended up in hospital as a result, they did everything possible to blame it on something other than the drugs.

    My belief is that they refuse to file an adverse reaction report because to do so would show the drugs to be far more dangerous than they want us to know.

    My heart is now working normally, so I stopped the Warfarin early in April and the rest by the end of May. I now take a Hawthorn supplement, which safely covers the same functions as the drugs they had me on, and I feel much better for it, but it is now late November and the after-effects just won’t go away.

    I’m incapable of having a sex life due to erectile dysfunction, get breathless on even slight exertion, have ridiculous amounts of intestinal gas and can do very little of anything because I’m so weak. I drop things because my fingertips are numb, and I’m still getting Warfarin bruises appearing spontaneously. My mental processes too are much slower than they were before I became ill in 2015.

    These are just a few of the lasting effects of the drugs which, admittedly, saved my life, but now they’re ruining my life, and I wonder whether the after-effects will ever cease.

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