Not the RxISK Manifesto

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October 18, 2019 | 11 Comments

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  1. It shows how we can read messages/images differently. I thought the photo was sent with the article by Rxisk rather than chosen by thebmj – to shows the point of the article ie the angry doctor dominating the show and the young woman protectively shielded by the young man.

  2. Dear rxisk team,

    Sorry for my english, I would like to tell my story anyway … Being not so young anymore and single for a very long time, getting anxious about my future, listening to people around me telling me that I am way too picky I finally got a feeling that I met my soulmate at almost 35. I was completely in love with him and we had a really spiritual connection, we were kind of friends, but not yet lovers. Everything seemed perfect and I was so happy. Unfortunately I started to take an antidepressant (SSRI) for some relatively minor problem. I only took one pill and a half when I noticed that I suddenly fell out of love and lost all interest in him. In the days I was taking pills I did not talk to him and I did not meet him or heard any new information about him – so what happened was definitely the consequence of the antidepressant and not me finding out, for example, what a loser he really is and losing all interest because of that (he’s not a loser but I’m just trying to explain how it felt – when you suddenly find out that your guy is a loser (whatever that means, usually that he is a liar or something like that) and you fall out of love naturally. It’s been seven days now since I stopped taking the antidepressant and I know that there is a possibility that I lost him forever and I don’t even care!!! I don’t care at all! He just doesn’t seem interesting to me anymore!
    Besides that I feel that I have absolutely no libido and that my genitals are almost slightly painful – I feel like in a refractory period after orgasm, but it’s one week long. I have a few questions, if anyone has any ideas:
    – since it’s been seven days already (and only after one pill and a half) – is this PSSD?
    – is there a possibility that I fall back in love with the same person or will I have to find somebody else? (this is very difficult for me and almost everyone is married at my age) Will I be even interested in finding anyone? (right now I don’t mind if I stay single forever, apparently)
    – did anyone else had the experience of just not caring if they don’t have a partner? I also don’t care about my friends, family, anything. I feel completely apathetic (but not sad or anxious about that – I’m afraid to tell anyone about how I fell because they will probably say that if I don’t care then it is not a problem! But I want to care!)
    – I’m worried (just rationally, emotionally I don’t care because I’m now numb, what I feel is just maybe a very very slight anger) about all the young people who are falling in love, forming partnerships and families, or newly married people with small kids, being prescribed SSRIs – what consequences will this have on their kids if parents get divorced etc. Even if only 1% of SSRI users remain chemically castrated permanently, shouldn’t these drugs be banned immediately or at least psychiatrists informed about this side effect – how are psychiatrists going to feel when they realize they personally chemically castrated so many people, families fell apart, children suffered – all because of the drugs they were prescribing? They will probably all end up on SSRIs to suppress the guilt?

  3. David – re ‘it’s going to take more than words..’

    It’s words being bandied about between GPs and others which are undermining the message so much (see Pulse which is one of the worst culprits, and it goes on in other private exclusive forums))
    Could Rxisk use case reports which include GP or other professionals’ inclusion on reports, given by people to Rxisk, be published openly on the blog and elsewhere in journals (with appropriate permissions /safeguards of course). Mainly it is ‘professionals’ doing the talking and reporting,and publishing research. Even if consent is given for publication there is no authentic verifiable inclusion of their experiences by those whose experience is being reported. It is a huge waste of reliable information.
    I think this could open the eyes of some of those who simply follow the often arrogant and ignorant statements which undermine people who report adverse effects and campaigners /activists. Even after new guidelines and advice from their own organisations are updated , however unreliable they have been, they still hold to their opinions and carry on in their own sweet way trashing the evidence of adverse effects – If there could be reports published from both parties with an input from an independant party if possible .is that worth a try?

  4. I still feel genuinely traumatized from the experiences i have had when trying to get acknowledgement for my PSSD.

    It has been so consistently bad over the 12 years of me suffering PSSD, that i am not sure i will ever mentally recover from the nastiness, and general in difference and contempt i have suffered at the hands of Psychiatrists, GP’s, and psychologists over the last 12 years of trying to get even basic acknowledgement and empathy for my PSSD.

    I feel genuinely deeply damaged and traumatized by the whole (ongoing) experience.

    The nastiness i have received has left me feeling hopeless and even suicidal on multiple occasions.

  5. ‘What my message is…

    This BMJ perspective returned my thoughts to a prominent, but informal group of psychiatrists on social media who present themselves with great certainty about what constitutes evidence. My fear is that over-certainty can lead to “self-righteous” attitudes and behaviours – and that these can hinder our shared goal of greater understanding.

    https://holeousia.com/2019/10/19/those-three-little-words/

    Last year when I attended an Occupational Health Consultant I found little understanding.  The lack of empathy and the fact that there was no support offered, left me in considerable fear of seeking help again.

    https://holeousia.com/2019/10/19/medical-guidelines-and-lived-experience/

    Powerful Embrace

    https://vimeo.com/101303835

  6. I didn’t really take it in. I suppose what strikes me is the doctor is the most defined figure in the picture and he is the one doing the talking whether confrontational or not. Maybe we can go as far as to say he looks assertive, holding forth, but then it could have been making the point that it’s the wrong kind of situation. Perhaps that is what I thought subliminally. It is certainly interesting to consider it in the context.

  7. EXCEPTIONAL Presentation to All Wales Therapeutics & Toxicology Centre by Stevie Lewis

    Describing her life blighted by Seroxat, how the doctors were most unhelpful, how she has campaigned for SSRI withdrawal recognition

    recovery&renewal‏ @recover2renew

    AWTTC Best Practice Day 2019: Campaigning for better recognition of pres… Well done Stevie Lewis! Speaking about experience #Antidepressant dependence and withdrawal issues https://youtu.be/4Hg1NwoZR8E  via @YouTube

    https://www.youtube.com/watch?v=4Hg1NwoZR8E&feature=youtu.be

    recovery&renewal Retweeted

    Mark Horowitz‏ @markhoro 8h

    Powerful account of Stevie Lewis’ experience of antidepressant withdrawal – increasingly realised to be all too common – and all the wonderful work she has done to prevent it happening to others.

    What an inspiring citizen.

  8. I am very moved by Sarah’s account of her probable loss of her soulmate at the age of 35, due to the changes inflicted onto her libidos and in her mental attitude towards him. I broke off my engagement to my delightful fiance, now husband of 48 years, because three months before we were due to marry, I was given the contraceptive Pill and I’d only taken it for about a week when I felt my whole attitude to my forthcoming marriage, my man, his family, my future, change. I descended into gloom, fear, and thorough dislike of him. I stopped the Pill in the next two months and began to feel a little better. My husband-to-be was very surprised at my changed attitude but thankfully didn’t give up on me. We married.
    But I was running on auto pilot. It wasn’t a happy time, or a wedding feeling as I’d expected to feel, all roses and joy. It was just a process, I hardly felt part of it.

    Then when I was 30, after a bodged mergency caesarean, following the birth of my first son, I was given the Mini Pill to stop me having what seemed to be a series of what are termed ‘missed abortions:’ but actually, 2 years later (after living with terrible pain) a second gynaecologist realised they’d stitched the womb titling the wrong way so it couldn’t support a pregnancy so surgery put that right. It was catching the bladder too so passing water had been agony for those two years, but that was considered to be ‘all in my mind’. But by then I’d suffered a horrendous ‘panic, fear, gloom’ reaction to the three days’ of Mini Pill I had taken. It took me a whole year to rid myself of chemical anxiety, and I had diazepam for two months which did help me with what I now know to be AKATHISIA I also got breast lumps within 2 weeks of taking the Mini Pill. (My mother had died in her 50s from undiagnosed till too late breast cancer). . I was afraid all the time for months, after being on the Mini Pill for three days, but I couldn’t work out WHAT the dark forbidding fear related to. Just like I’d felt negative all the time before I married, but for seemingly NO reason.

    Amazingly too, I knew I was pregnant with my second son long before it showed on a test, so I assume from all this that my hormone system is incredibly highly tuned and linked up with my mental processing. I had a similar awful reaction to 3 days on Prednisolone steroid when I was in my forties. . I’ve never taken an SSRI but does this maybe indicate that SSRIs and SNRIs can also mess with one’s hormones and thus one’s psyche, and hence of course hit the libido.

    I hope Sarah can show this Blog to her soulmate and that he will help her to find her way back to some kind of normal relationship, even if she feels little or nothing at the moment. She maybe needs to go onto automatic pilot like I did. It paid off in the end for me.

    I empathise enormousl with Spruce about not being believed. I was never believed by doctors of my husband’s family about what those hormones could have done to me, and till I read ‘Once A Month’ by Dr Katherina Dalton, I didn’t realise myself what havoc hormones could cause but she explains it well, and how metabolising them badly can affect one’s adrenaline/cortisol levels, and hence the mind. My husband’s family have never really accepted me after the way I behaved in that three months before we married, and have put me down consistently, implying I have latent mental health issues, ever after. But I have never given them cause. So I can feel very much for Sarah and Spruce. Medications, taken in good faith, prescribed by trusted doctors, can, in a flash, ruin lives and reputations so easily. Terrible. Wake up doctors! And as shown here in Dr Healy’s post, the patient needs to be believed and consulted with respect. Otherwise you can pitch them into a hellish existence.

  9. WilliamHarveyLibrary
    @GEHLibrary Has tweeted the blog.
    We are a health library that aims to connect George Eliot Hospital NHS Trust with the right information to learn, develop, innovate and research.
    486 Following
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  10. Clinical judgments, not algorithms, are key to patient safety—an essay by David Healy and Dee Mangin (Published 02 October 2019)
    Cite this as: BMJ 2019;367:l5777
    Article

    Re: Clinical judgments, not algorithms, are key to patient safety—an essay by David Healy and Dee Mangin
    Healy and Mangin’s assertion that failure to realise that clinicians’ and patients’ judgement trumps trials is obvious to most of us and reminds me of the advice of my first clinical teacher (the late PBS Fowler) who said “Listen to the patient and they will tell you the diagnosis”. Back in the days when all the records were hand written and we recorded what the patients told us the words we used were generally the same as those used by the patients.

    ‘Genital anaesthesia’ unlike ‘numbness of the privates’ is not patient speak. It is still a mystery to me how this concept managed to get suppressed as a side-effect back in 1987 when free text was used. Was it that there was no option for patient to record exactly what they experienced?

    Nowadays we have computerised records which do have the possibility of adding free text to coded concepts (Read codes, SNOMED CT, ICD 10 CM) which often have multiple synonyms which are often helpful in finding a desired concept. Unfortunately SNOMED CT (like its predecessors Read and ICD) lacks completeness (despite claims of incredible comprehensiveness) and in the authors’ example above – it cannot be found.

    The authors make no mention of MedDRA – an international medical terminology with an emphasis on use for data entry, retrieval, analysis, and display. It is the ‘dictionary’ for concepts used in labels (Specifications of product characteristics outside US) . MedDRA is not used by clinicians using computerised records. Thus the standards set in MedDRA are not known or observed by clincians.

    In MedDRA the nearest concept to ‘Genital anaesthesia’/’Numbness of the privates’ is ‘Hypoesthesia of genital male’ or ‘Genital hypoesthesia’. This demonstrates a big problem for users to successfully search and find a desired concept. I found the MedDRA concept searching on the string ‘esthesia’.

    There needs to be standardisation of the language used to describe all aspects of medicine and medication effects. It is worse than useless for pharmacists and clinicians to have totally different systems.

    Roger Weeks

    Competing interests: No competing interests

  11. They say a picture is worth a thousand words.
    The picture above reminds me of a senior GP who appears to be assertive and in control of his expertise.
    I get the impression that he is trying to genuinely explain, to a young couple, that he knows what is best and understands that a particular medicine he is going to prescribe is going to benefit the husbands depression.
    He is explaining to the couple that he has been in his profession for over thirty years and he is trying to reassure the husband and wife that there is a medicine that is going to transform the husbands life, which will allow him to get some joy out of life, again.
    Somehow, the husband does not look too convinced about the information the GP is relaying to him. The couple seem interested but are not very convinced that what the GP is communicating to them is factual.
    The GP seems to be honest and sincere and I feel that he is trying to reinforce what he is saying by his open positive body language and caring expression on his face.
    He may be saying that he takes this medicine also and it has done him a world of good however, on the other hand the husband and wife give me the impression that they may need more information before they make an informed decision about the treatment plan, regarding the husband depression.
    What do you think?

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