RxISK Rorschach: Do not Go Gentle

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April 9, 2019 | 47 Comments

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  1. Starting at ‘obsessed’, this surely shouldn’t be painted as a negative attribute.

    It is a fan-fare, in the glory of knowing you are right and bold and go where no man has been before…passion, dedication, energy, compulsion, unstoppable feelings – if you don’t have an ‘obsession’ what’s the point…

    You only have to look at Molly Russell’s dad, who is well on the way to changing laws, where the media can’t stop talking about it (on the news again last night), when the politicians are going all gooey at the thought that Molly took her own life because of Soshall Meedia. Molly’s dad has lost his daughter in dreadful circumstances, but, he is an ordinary bloke who has been thrust in to the media

    https://www.dailymail.co.uk/wires/pa/article-6897109/Molly-Russell-s-father-wants-tech-firms-held-account.html

    Before David’s blog and RxISK.org, there were books and lectures and studies and research but nowhere was there such a forthright chance for us Drug Wrecks to voice our thoughts and opinions and share our tragedies with each other.

    It took exemplary foresight to do this, but, as with all things, near the knuckle, it also brings truths that hit home and which are disturbing, terrifying, shocking and noose-bindingly chafing

    If a doctor caves in for a moment, he knows his standing and career will be over

    The media pussy foot about with it, where is the logic there..

    All these ideas that are put out are trying to help us, to take control of our predicaments and do something valuable and far reaching, we are the harmed, it is up to us to change the rhetoric

    I don’t have ‘obsessive’ compulsive disorder, but, a psychiatrist could give me that label if he chose to. Why have I made comments, here, in airport lounges, in internet cafes, in howling winds when the internet connection is iffy, when I think why should I bother, why not just walk away …

    I don’t have any pressures to toe the line as I live independently and I am not upsetting anyone by spending a few hours catching up with SSRI stuff. I am not torn with how I spend my time, that is completely my own affair

    As Venus is rising, Snoopy in Furs, allows us to appreciate all the sentiment here and as one who approached my lot, head on, it gave me some power but the power evaporated with their relentless opposition to anything resembling a fair hearing …

    https://www.enotes.com/topics/waiting-for-godot

    Waiting for Godot …

  2. David,

    I cannot get my head around this.

    A somatic symptom disorder, formerly known as a somatoform disorder, is any mental disorder which manifests as physical symptoms that suggest illness or injury, but which cannot be explained fully by a general medical condition or by the direct effect of a substance.

    Treatment-resistant depression (TRD) is a term used in clinical psychiatry to describe a condition that affects people with major depressive disorder (MDD) who do not respond adequately to a course of appropriate antidepressant medication within a certain time.

    I’m confused?

    If diagnosed with somatoform disorder (Prescriber doesn’t know what you’ve got) one is given brain pellets that (ahem) one’s body resists, one then becomes a treatment-resistant depression patient. (um, the brain pellets didn’t work for the unknown condition)

    What then, does this mean?

    The overwhelming majority of patients with Treatment-Resistant Depression TRD presented with somatic symptoms.
    https://www.ncbi.nlm.nih.gov/pubmed/12759160

    Isn’t this just going full circle, you know, a merry-go-round that isn’t very merry at all?

  3. I commented on the “Not Go Gently” post by saying that we are worth more alive than dead and that we need to keep making noise. However, the how we make noise part is what I don’t know the answer to. It does not work to try to explain what is going on doctors. I have tried that for several years The trauma from what happened is so great that now I literally dissociate when I go to the doctor, as a buffer against the grief and anger.

    My friends and family are totally sick of hearing about it. I’m at a loss in terms of how to relate to most people now because not being understood—the aloneness in the terror was/is almost as bad as the withdrawal and lasting damage. I try to tell myself that no one can understand anyone 100% and that I can’t expect perfection. But they were/are so off the mark.

    I’ve tried testing the waters a little bit at work (work in the field) and got what I expected. Ignorance. Made crystal clear any efforts I made will not be supported. And I felt that I was being viewed as some kind of freak.

    Pretty much anytime I tell people my views on psych drug withdrawal, damage from psych drugs, how we don’t have data, how journal articles are ghost written, etc I have to risk being viewed as a freak.

    For me, to survive, the path forward is to keep having hope. And to keep setting goals for myself for ways I can re-claim aspects of my life that I do have some control over getting back. Like pushing through the pain when I can do activities in my life. I call it my “come back.” It has been grueling slow and I am having to reinvent myself.

    I do think it helps to try to feel united with other human beings in having suffering, broadly defined. Especially those who suffer in the hands of greed, corruption, ignorance, and unchecked power.

    Sometimes I don’t think it’s helpful to think about the issues because I don’t think the efforts I’ve tried to work toward a solution have gotten me anywhere. And sometimes looking at this issues get me so deeply upset it becomes counterproductive. But that doesn’t mean I’ve given up. Just that am waiting to get myself stronger (climbing out of a pit) and I am trying to find a smarter or more effective way to make a difference.

    • Katie B T you are not alone in feeling misunderstood by family, friends, and work colleagues. I understand exactly how you feel. Being drug wrecked can really have all sorts of knock on effects on your relationships. None of them good.

      No one in my family apart from my mum really understands what has happened to me.

      My dad at one point was threatening to cut me out of his will he got so sick of hearing I was still unwell from benzodiazepine withdrawal. His GP had told him that it cannot continue that long, and he believed him over me. Near the end of his life in 2017 he came around a bit to thinking it could last longer than he first thought, but he still didn’t understand what had happened to me.

      My sister has no understanding or sympathy for my situation. She regularly complained about me not working to my mother while I was going through withdrawal, and regards my problems as being caused by laziness and an inability to “sort my life out”. She cant believe I was not well enough to hold down a full time job through most of my 20’s because of withdrawal issues, and views the fact that I am behind most of my peers financially and in most other areas of life as “my own fault”.

      I am estranged from the rest of my family, which is not entirely because of the protracted benzodiazepine withdrawal or the PSSD, but this has genuinely been a factor as they too cannot understand what has happened to me.

      After falling out with two family members in regards to an issue with my dads will, who I had a tentative relationship with before my dad died, the only family member I have spoken to in almost a year is my mother.

      I have also lost two close friends over the years while struggling with withdrawal, when they couldn’t understand why I was so unwell. One was a close friend since childhood. I have also lost a number of close acquaintances too because they couldn’t understand what was happening to me RE the protracted symptoms from the benzodiazepines and SSRI’s.

      I have seen this happen to so many people who have been adversely affected by psychiatric drugs. There are even threads on the withdrawal forums where people have complained of their family’s shunning them, and their friends turning their backs on them, because they have taken so long to recover from withdrawal effects.

      It happens a lot.

  4. Re treatment resistant depression. I am in agreement that it is treatment induced. It does not surprise me that now they want to use this diagnosis to support assisted suicide.

  5. I agree too with Katie B-T about treatment resistant depression being drug induced. My son had been put on and off so many different medications in the course of two months or so, that his brain must have been spinning. Then he was told to get off the lot, cold turkey. Then slammed back into Olanzapine and Sertraline. ‘You are not depressed, you’ve done this to youself’ yells frustrated psychiatrist. My son was thought to be being awkward when all these pills didn’t work, ie didn’t stop him saying honestly, he was sorry but he was still plagued by OCD-like suicidal urges, though he didn’t want to die. On the previous post here on RxISK there were two videos about young women who were in so much mental pain they wanted to die. My son, in the last two months of his life, was in similar pain. He kept begging me to kill him. I actually had to go away for a couple of weeks and leave him at home with my husband, knowing he probably wouldn’t ask him. He kept ringing me, begging me to let him go. I kept my voice as strong as I could, giving him all the reasons I could think of, to stay. In one 9f those young women’s stories, she says “ I can’t bear it that even when I find the courage to get going again, it comes back yet again.” It’s the ‘again And again-ness’ of it all that breaks them. An endless not so merry go round, as I think Bob Fiddaman described it. I’ll admit, at the end, when back with my son, seeing him unable to eat, sleep, sit still, or escape from nightmare thoughts, he begging for brain surgery, anything to give him peace, I did pray for release for him. An empathic doctor would have been something. Helpful supportive words could have kept up his resolve to surmount it. But he got the opposite. It’s no good making a sick person feel shamed by a psychiatrist hypnotically shouting at them. They need a ladder to climb up and cling to, not a reason for self loathing,

    With regard to my son, like I said before, I’m so glad he’s pain free and safe. My own pain at his loss is nothing to my pain when trying to get help for him and being ridiculed for trying and hearing him say, “leave it Mum, there’s no hope for me”. Incidentally it took all my courage to watch those two videos. How utterly tragic that mental suffering can exist at these levels, and we can’t figure out why and reverse it, without making it treatment resistant. Also, so tragic that those who haven’t experienced it, or watched it at close hand with understanding, can of possibly imagine what the sufferers are feeling. Such brave people. Living day to day with it, as are so many who write here, and so many were, who had to go. This is surely the cruelest torture of this century.

  6. Spruce–thank you for sharing what you have gone through and continue to go through with relationships. That all sounds horribly dreadful. Especially the part about how your dad believed his GP over you. Talk about feeling completely alone. I think in addition to people not getting that problems are drug-induced, extremely severe, long-lasting and/or forever, people also aren’t able to understand that there is no help or relief. One of the comments that was well intentioned but left me feeling extremely alone that I got was that I should just go to the emergency room. Need I say more.

    Heather–I can’t imagine the helplessness you must have felt seeing Ollie suffer so deeply. I remember from his story that the medical system was particularly egregious in their abuse of power and control they had over him and his medications.

  7. Ralph Nader has been obsessed, Greta Thunburg is obsessed, Rachel Carson was obsessed… People get obsessed because they CARE.

    One thing each of us can do is BE THERE for someone else.  Extend what you need to others.  When you CARE, you create a safe haven as David has done here, as Heather and David are doing in their community, what Mary and Shane are offering in theirs.  As we each contribute something we are well on our way to creating the infrastructure that will support the changes we seek.

  8. Hi – thanks for above – please though can you say a bit more about . within Rxisk there is attempts to get an analysis in place ..in order to get others to cooperate ,,? Is there something like a ‘list’ of priorities ?Or things which have been weeded out as not being useleful avenues to try ..?
    I,m reading through material on how trials are monitored as I would have thought ethics cttees would have a right to all the data used in a trial. There are layers which need a bit of reading but seems the Data Monitoring Cttees are being let off the hook? Quote from cancer research website linked to Nat Inst for Health Research – chosen at random – ‘Researchers usually continue to monitor ‘patients’ (are they not ‘participants’ in trials?) after they finish ‘treatments’ ( are they not trials/experiments) sometimes for several years..How is the monitoring cttee itself monitored – where do they report adverse effects – there is no info to volunteers about access to the results of ‘their’ trial as far as i can see so far.
    There is the National Inst of Mental Health Info Centre in USAwith info on trials for depression but no info about giving volunteers final data. Some refs to pub med which doesnt allow public access. Have emailed to nimhinfo@nih.gov – with query

  9. Just some thoughts, which have been suggested before I think.

    What if we managed to find hard evidence that PSSD is causing a small fibre neuropathy (or something like that), which is causing the genital numbness, and the other aspects of PSSD as well. What if we can prove that PSSD is real and find the “smoking gun” showing that the symptoms of PSSD are not all “in our head”, or caused by other factors, as we know they are not.

    Even better, what if we can prove that not only those with severe PSSD, but also those who don’t think they have PSSD, have had a slight and persisting alteration to their sexual function and desire caused by previous use of SSRI’s. What if we can prove that most people are losing at least a small part of their sexual function/desire by taking SSRI’s, and that even those who feel they “went back to normal” have in fact only gone back to maybe 85% or 90% of how their sexual function/ desire was before they took an SSRI, and that they actually have a mild form of PSSD.

    If we can prove this, how is the medical community going to deny what is happening to us anymore. They cant. It will be like checkmate on this issue in our favour.

    But until we get this hard evidence that SSRI’s are causing microscopic changes that are causing the persisting sexual dysfunctions, the medical establishment is going to call it all just “a theory”. They are going to laugh at us, ridicule us, say we cant be taken seriously because of our history of mental health, claim it is “other factors”, and hide behind the incompetent and corrupt regulators who they can count on to do nothing to resolve this issue.

    So really the only real way forward that I can see with PSSD and other persisting withdrawal symptoms, is to prove them wrong, and provide irrefutable evidence that we are right, which they simply cannot ignore.

    And yes this sucks, and is unfair; it shouldn’t be us that has to put in all the hard work to prove that they have harmed us, but that is just the reality of the situation.

    But if you look back throughout history it has always been this way.

    Whenever someone has suggested a theory about something he or she was sure was right, which challenged the status quo of how things were at the time, they have always been ridiculed, shunned, and laughed at. There are countless examples of this.

    I was watching a programme about Astronomy and gravity the other night, which triggered the idea for this post. The person mentioned on the programme (I cant remember his name) discovered that gravity worked by a different formula or mechanism than thought at the current time. He was laughed at and ridiculed for years by his peers. Then four years later there was a technological advancement, and he was able to prove he was right, and he made history, and all those who laughed at him, had to eat their words.

    Another example was the Western Australian doctor who put fourth the idea that he was sure a type of bacteria was causing stomach ulcers. The established opinion was that stomach ulcers were caused by stress. He was ridiculed and laughed at for years, but after a lot of hard work over many years, he was proved right.

    There are so many other examples of this happening throughout history. In fact it is almost a standard that when something new is proposed that challenges the status quo at the time, it is disbelieved and ridiculed, until there is the hard evidence that proves it right.

    I feel this is the situation we are in with the PSSD. We have to find the hard evidence. Until we do they are always going to find a way to deny what is happening to us.

    Easier said than done of course.

  10. ‘Die on your feet or live in your knees’
    Why aren’t we winning? Dr Healy wants us to stick with the medical model, not to get sidelined off into alternative therapies etc. But the very few doctors I’ve come across who one could confidently take a RxISK Report to, are those who are open minded and inquisitive and looking at medical problems from all angles. They take the line that the body has means of healing itself if you give it the right ingredients, nutrients, mental support.

    I wonder how open minded any of us really are. I wonder if I dare write here about research I’ve done, in company of others, about things like Geopathic Stress, Bio Energy healing etc. Well, I’ve hinted at it now. There are very few doctors who are open minded enough to listen to these theories. Sixth sense, inituirive feelings we are all born with, Universal pool of energy….this is stuff many of us know can work, but we keep mighty quiet about it because we know we will be laughed or pitied out of court by the medics. We can see what global warming is doing, but what about the environment around us, the energy in things like electromagnetism that batters our brains when they try to regenerate whilst we sleep, what about the geographical surveys done by German GPs that show that pockets of cancers occur in areas over underground streams.

    If we weren’t afraid of death, or worse, we wouldn’t keep imbuing doctors with the misplaced power that we do. We get ill, we get scared, we forget our inner intuitions, we hand ourselves over to doctors, who these days rely on Pharma to heal. The doctors like my grandpa in the 1920s and 1930s had to rely on their gut feelings and their knowledge, and often, their empathy. They used old remedies, placebos. And common sense. And realism. Sure, there were deaths from things we don’t die of now. But were there better-lived, if shorter, lives? Somewhere things went wrong, we abdicated our inner power to the glitz and the promises of Pharma.

    Spruce is right about finding scientific evidence of neuropathy or whatever is causing PSSD and then displaying the answer for all to see and ultimately have to accept. This is because Pharma damage has been done chemically and we have to follow the trail back and unpick it somehow.

    Sometimes it seems that our cause is hopeless, that we are losing ground. It would certainly seem that way, as the world spins faster and faster into the grasp of money-making Pharma and we are mesmerised into forgetting the power of our own intuition. The idea of there being an energy out there that we can tap into, that we can collectively ‘will’ things to turn around, find solutions more powerful than the mere old fashioned science of Pharma, doubtless sounds like utter nonsense to the majority of the medical community and readers of this Blog. But not, luckily, to all.
    Einstein knew it. Some of us have tried and tested it and been amazed by it. So, I know that there are few doctors I can discuss this with, just as there are few I would test out with a proferred RxISK Report. Why? Because of closed minds. I’d risk being dismissed out of hand because what I’ve found to work may not be proven scientifically to work. I can only find the proof in my own pudding. But the ancients knew all this stuff (and I don’t mean religion here), they tapped into power that they knew was there. It was all they had, and boy, was it something. You may say it’s just about belief, brain washing, whatever. You can say what you like, but test it. Read about Bio Energy, and the lab testing of it. If it works, who cares HOW it works. And it doesn’t mean that we opt out of the medical model Dr Healy et al, it means that we get medicine to look at deeper more effective ways of healing. And we do more to heal ourselves so we only use Pharma poisons when we really have to, when they are genuinely needed. We restore balance, we use our gifts, we harness our energy and put it to good use.

    • Heather

      How open minded are you to the idea that the improvement in life expectancy over the last 200 years has come primarily from modern medicine – some of the most important contributions from women doctors who have been written out of history like Josephine Baker. The problem now is something has gone wrong within medicine – so that we have lost sight of the harm we can do. This doesn’t look on the face of it like a problem that will be healed by geopathic whatever – there is probably nothing more that the establishment would like than to have us open our minds to geopathy

      David

  11. Mary R – have you come across the ‘Alliance for Natural Health International’? It promotes some of the ‘things’ you are interested in re natttural healing and diet and coincidentally published a piece on Peter Gotzche and the inaugural meeting held in Denmark 9th March the ‘Institute for Scientific Freedom.

  12. Susanne,
    I think you keep thinking I’m Mary R, (mother of Shane) but I’m Heather R, (mother of Olly), we often comment in similar ways so that could be why. But, having mentioned that, no, I haven’t come acr9ss the ‘Aliance for Natural Health International’ and will look it up, sounds very interesting.

    David
    Yes, of course I accept what you are saying about modern medicine’s role in the last 200 years in improvement of life expectancy, and have said as much in my follow up comment which I think still awaits moderation. Antibiotics, hygiene etc just to mention two. But yes, something definitely HAS gone wrong within medicine and I reckon it’s not medicine itself but the god-like role many doctors have assumed, and believe of themselves, so that they do not notice or accept the harm they do in over prescribing Pharma double edged swords of remedies. All I’m saying is that if we don’t keep bowing and scraping to them, assuming that they are the founts of all knowledge, and also research and be aware of how the natural world affects us, environmental factors, the value of good nutrition, etc etc, then we can reserve our need of them to only when it is strictly necessary. There is such a lot being discovered now about how our health can be affected by so many things we can do for ourselves.

    In my own family I saw the change in doctors’ attitudes across two generations. My GP grandfather was a listener, open minded, very clever, well regarded, fantastic obituary in the Lancet, loved the modern medicine of his time, always seeking answers, (regarded women colleagues very highly and would have always given them due credit for their work, discoveries etc). His son, a GP, was frankly arrogant and had assumed the god-like mantle. My grandfather was driven by the wish to heal, with every means he had. Pre 1948 he was supposed to charge for his visits but he only sent in a bill to those he knew could afford to pay. He did not die a financially wealthy man, but his wealth for him was in the good he’d achieved for his patients. His son had the benefit of all the new tools of modern medicine, which should have made his job far more effective, but with them came a blasé form of superiority which did him no favours. When things get easier for them, do some medics get sloppy I wonder?
    Nothing wrong with inquiring into the effects geopathy has on our cells, all new discoveries in healing have often come from open minded research. It takes a very brave doctor to break the mould and admit to it.

    • Heather – its not GPs becoming arrogant. Their role is getting diminished – not enhanced. There is a climate change. How couldn’t there be if there is no access to the data behind what people prescribe or do. Rather than turn to alternate or complementary treatments – we need a Greta Thunberg to force us all to face up to what we are doing – including anyone who advocates a turn to mysticism rather than sticking with – why are we being lied to

      D

  13. What a brave soul, Greta Thunberg, is!
    So full of determination and vision, at such a young age.
    Good on you, Greta!
    You are an inspiration to all of us.
    Greta Thunberg, is an activist for environment.
    If we all took a day off, to walk down the streets to parliament and demand safer medicines, imagine what kind of a change we would all be creating?
    To demand that all the clinical data be disclosed, pertaining to each and every medicine, would create a double edged sword.
    Beneficial changes for not only the prescriber but the patient. ~ A dream that we all hope to achieve.

    • If anyone else is up for marching in London about the lack of transparency in regards to the safety of prescription medicines, and the harms they cause. Count me in.

      If we all banded together and marched on the MHRA, demanding access to all the data, an end to a conflict of interest within the MHRA, and acknowledgement for protracted withdrawal and PSSD, we might speed things up.

      I would also consider other ways of making our voice heard. Boycotting and blocking the entrance to the MHRA, by tying ourselves to the doors, whatever. Mass email campaigns, and mass calling of the MHRA by everyone at Rxisk with PSSD on a daily basis might work too.

      • MHRA and FDA and EMA are bureaucratic operations. They are bound by rules and not worth trying to engage. Our doctors are a different matter. They are not supposed to prescribe without access to the data. Focusing on doctors might be a better bet

        DH

  14. Anyone who has just listened to the science programme on Radio 4, called ‘In their Element’ will have heard how sodium channels and ion channels work, and how their complex system causes electrical messages passing between cells, which in turn drive everything in the body, including pain and I wonder, sexual numbness, muscle control etc. This was what I was trying to explain about not interfering with the electrical systems in the body. In sleep the brain aligns itself with the incoming electrical signals and adjusts to a steady rhythm. If we get a lot of alternating interfering electrical systems beside us in sleep, from batteries or mobiles or TVs too near us, the brain, instead of resting and renewing, has to keep adjusting to block out these signals before it can send it’s own electrical messages for cell repair during sleep. I’m wondering, could interference with our sodium and ion channels by ADs and antipsychotics, cause PSSD. Very interesting research being done at Oxford on these ions. Well worth listening to the programme, which was packed full of fascinating discoveries. Also about pain relief and puffer fishes. No mysticism here, but new science….

  15. Just 16 years old … pure as the driven snow

    This one was 14 years old …

    Deborah Coles‏ @DebatINQUEST 1h

    Deborah Coles Retweeted INQUEST

    But for the determination of Amy’s family and their legal aid representation at the inquest the criminally unsafe practices at the Priory would not have been exposed, resulting in this prosecution. This was scrutiny the Priory resisted at all stages. #LegalAidforInquests

    https://www.theguardian.com/society/2019/apr/17/priory-fined-300000-over-death-of-amy-el-keria-14-in-sussex-hospital

    “We remain absolutely focused on patient safety and will continue to work closely with commissioners and regulators to learn lessons from incidents and inspections quickly and ensure all concerns are addressed in a timely and robust way,” the group added.

    How many times have we heard words like this trip off the tongue, while the body is cold, the parents distraught, and there is a financial penalty..

    The mother is raging …

    I was acutely aware that if I stayed with my docs, with Seroxat, I could be permanently drugged, hospitalised again and again and in all likelihood sectioned. My daughter taken away, shamed in to submission…

    There were a few years in between shouting out the docs and regaining my usual sense of composure…

    Nobody should forget that ‘medicated’ ‘activists’ have been designated mentally ill and this is the argument put forth to chasten any activities in this direction.

    Years and years ago it was suggested that injured parties stage a demonstration outside the offices of GlaxoSmithKline.

    You can hear it now “look at the lunatics” – coming out of the windows …

    Has enough time and information now passed, that the ‘lunatic’ fringe would be taken more seriously, or is the weight of the naysayers as strong as ever it was …

    What would really stop them in their tracks, what would an ‘Antidepressant Hero’ do?

    Are ideologies, ethics, rites, myths, legends, and magic related to the attainment of insight in ultimate or hidden truths, are human transformation supported by various practices and experiences…

  16. Good news for Canadians – but not for UK.
    In thebmj ‘Canada Finally Opens up Data on New Drugs and Devices ‘ 17 April 2019 Joel Lexchin Mathew Herder Peter Doshi.
    It’s worth googling Peter Goshi who took action against the Canadian government to bring this about.

    In the same issue, on the same page a self congratulatory article involving the organisation led by Ben goldacre- UK universities show the way in reporting clinical trial results – thebmj is more keen to gloat over other European countries’ records than admit how disgraceful the situation is in UK

  17. Hi David,
    How can we possibly focus on some Docs if they don’t want to know?
    If anyone was to present a RXISK report to them, I have no doubt that they would throw it in the bin or just escort you out the door.

    The ‘ignorance’ or the ‘lack of knowledge’ about the harm that these medicines, induce, still does not go down, very well, with me!
    Sadly, there are so many people suffering as a result of harm and unnecessary deaths, due to the meds that are prescribed.
    If docs are privy to all the information, pertaining to a medicine, that we know nothing about, how can we just swallow a pill and ‘wait and see what happens?’

    Making drugs safer is a communal thing and should not just be discussed with the doctor concerned.
    People, in the wider community, need to be made aware of unsafe medicines.
    Sadly, there are a lot of Docs out there that do not want to know about random flawed batches or a NOT so ROBUST system.

    Annie, I believe the ‘raving mad lunatics’ are those who are in denial or don’t want to accept that lives can be damaged as a result of rogue medicines.
    The ones who should be designated ‘mentally ill’ are the ones who, take corrupt money, ruin our lives and display no compassion, empathy or understanding of what their medicines are doing to a lot of people.

    It all comes down to Docs harming our good names and placing labels on us that are not true.
    This is where the damage to our good name has been done.
    The pills have done the damage however, the further damage done by untruthful labels of ‘who we are and what we stand for’ is indescribable. That’s why I have given myself the ‘bad guy’ label because this is how they want us to appear to the outside world so that the TRUTH is not disclosed.
    Sadly, this is where a lot of the unnecessary damage is done!
    Meds ruin our lives and some Docs further contribute to the harm by treating us poorly.
    When is this ‘typical stereotype’ of mislabelling us and treating us with contempt, ever going to end?

    • Carla

      The point is there is no point targeting the agency that is set up to regulate the wording of adverts. So if not the regulator the question is who to target a protest at. Individual doctors may not the right focus but doctors in general are.

      D

        • I didn;t say they aren’t worth targetting but we’re not going to get far focusing on individuals – besides which everyone contributing to this conversation has done nothing that I am aware of to build up maps of doctors who listen – this would be one way to change the culture.

          Everyone seems to be looking to a father figure – a regulator or a medical body or someone to step in and solve the problem. Its not going to happen. It has to be those affected who solve the problem

          D

  18. Good Question

    AntiDepAware Retweeted

    consultant‏ @medsconsult 3h

    Check out my new blog post

    Are the Scottish Government raising the risk of Suicide?

    April 18, 2019

    Beverley Thorpe

    recovery&renewal Retweeted

    https://www.collaborativemedconsulting.com/single-post/2019/04/18/Are-the-Scottish-Government-raising-the-risk-of-Suicide

    James Moore‏ @jf_moore 3h

    A powerful and important read, contrary to the ‘conventional wisdom’ maybe we should be asking ourselves some searching questions about the impact of awareness campaigns in exposing more people to potential harm. Thank you @medsconsult #MentalHealthAwareness

    Good Answer..

    • Annie this link is brilliant and one of the best explanations of adverse effects of ADs and AKATHISIA that I have recently read.

      Carla, I share your reservations on how to follow Dr Healy’s advice to tackle doctors, if not regulatory agencies. When we are seriously ill and need medical help, we need our GPs. If we upset them, and I’m afraid, as even he has admitted in the past, they often turn nasty when confronted with questions or information they don’t agree with, if we become regarded as a nuisance, they can suggest we go elsewhere. But we can’t keep switching between GPs as we get more blacklisted and with each switch, we take more of a risk to our reputation. If we live in rural communities there may not be many practices to try to switch to, Dr Healy suggests now that maybe individual doctors are not the best targets. So do we chain ourselves to the railings in London outside the BMA? Won’t the police just come and quickly remove us and won’t those inside just brand us all as mentally ill?

      One way to maybe make a difference is to become a lay stakeholder in NICE, which we have done. Anyone can apply to do this. You fill in a form. Doctors seem to cover themselves when prescribing, by saying they are following NICE guidelines. So if we can influence those guidelines, might this not make a helpful difference and affect doctors that way?

      I think Spruce was sincerely trying to find a way to make a protest, in an effective way, drawing public attention to the lies we are being told about possible dangers of medications, insisting on access to unredacted data, and thus making doctors aware of any public groundswell that would follow. The MHRA, with whom we have had endless dealings, offer soothing answers, but mostly changes if any, are hard won and very very slow to be initiated. They are great at saying ‘how seriously they take things’ but they are funded by Pharma so they are foxes in charge of the hen house. A ‘Tale of Mr Tod’ if ever there was one.

      Isn’t it a form of arrogance on the part of doctors not to be open to patients’ offering of ideas differing to theirs? One doesn’t have to agree with the opinions of another, but if we censor them before giving them a fair hearing, how can we seriously assume we are well informed. I can’t honestly see how we will ever get doctors to stop prescribing without access to all Pharma data, unless we tackle this in medical schools when they start their training. Maybe that’s where we should be mounting protests, handing out leaflets, catching them whilst they are still young and idealistic?

      • Heather

        There is no point turning to NICE. NICE can only work from ghostwritten company articles about trials that do not collect adverse events. NICE have no access to trial data and regard what happened to Olly as anecdotal

        David

  19. When I read your comment Carla I had an image of the boards hanging from the necks of Welsh children who were made to wear them at school for speaking Welsh instead of English. The offensive psychiatric labels serve the same purpose – they dehumanise, portray people as inferior members of a sub class, , to be forced to bow to those with superior power over lives knowing they have means to wield that power simply by labeling which can lead to monitoring and control , loss of freedom, to denigration humiliation even forcible ‘treatments’ with toxic medications and a feeling of shame both by the labels and, I agree with what you say – the attitude of too many doctors which massively compounds the harm done by medications .The decent ones are still not decent enough to insist on being given the information they should be sharing with those who consult them . There can be no such thing as benign abuse – that’s what it amounts to with the lies the ‘nice guys’ tell rather than admit they don’t know enough about the medications they prescribe.. – ‘think of it as being a diabetic – you will need medication for life’ ‘no the tablets can’t cause any harm’ ‘they leave the body as soon as you stop taking them,’i seem to have forgotten the repeat prescriptions – you had better have a depot injection (so you will be benignly forced to be drugged for a month at least) what’s in it?- it will make you feel better ‘How? wait and see our time’s up I’m afraid – come back and see me in a months time’ No thanks all the same . Truth is -You are too frightening. Lies and evasions knowing they can get away with it. . Truth is – you’re arrogance and ignorance are shocking – who would have imagined doctors are ignorant of what they are prescribing ? .

  20. David

    I think the idea of getting into NICE meetings as a stakeholder was to raise the issues in their meetings openly like lack of accessible data from drug companies and press them for answers as to WHY they permit the use of these drugs if they don’t have access to it, if that’s indeed the case. It isn’t about looking for a ‘father figure’, it’s trying to find ways to influence policy about prescribing. So many doctors use NICE guidelines as their excuse for not taking responsibility for the harm they cause.

    In the same way that when Roche were tackled face to face by our group of parents, especially about the availability of drugs of theirs (Accutane) accessible by anyone without a prescription by buying online, they told us it wasn’t their problem because they relied on the MHRA to monitor these things and shut down these online sites, prosecute or whatever. When we got the BBC to do a tv investigative programme, it became clear that MHRA were falling short, Roche didn’t have anything to say in their own defence except the usual written disclaimer that they ‘take the safety of the use of their medicines very seriously’.
    The MHRA made themselves look ridiculous quite clearly to any of the public watching that programme. (BBC inside Out West Midlands). But this is t enough to trigger massive public outcry about the uselessness of these organisations who are not protecting us. Generally public opinion about the MHRA is dismissive but we seem powerless to care all that much. Maybe it’s becausd people don’t know what they can actually do to change the system and hold them to account. So they shrug and walk away.

    As to whether we’ve tried to add anyone to the road map of listening doctors, well, yes, they are hard to find but I did offer at least three very early on to RxISK, and they were: Dr Sarah Myhill, (practising privately now in Wales) Dr Jean Monro (of the Breakspeare Hospital, Hemel Hemstread, – both of whom also write as consultants for WDDTY) and Dr Simon Lenane, an innovative listening GP in Hereford. These are not just ‘nice’ doctors but in the case of the first two, they have stood up to the GMC and write publicly about their views on medications and treatments. Dr Simon Lemane has used social prescribing instead of ADs to great effect and spoke publicly about this at the Hereford Conference on Loneliness and mental health several years ago as a panelist, so he made his views clear. He also spoke openly to us about Accutane, and we regularly update him on RxISK. By contrast, our own GP who is ‘nice’ but not ‘enthusiastically involved’, has been regularly updated by us with, amongst other info on Accutane, documentation about the Flox Tox issue, justifying our request for and amendments on our Notes saying unless we are dying and there is absolutely nothing else to save us, we refuse to take Flox antibiotics. His response is to smile and say ‘ah, but the jury is still out on that one’, and when the jury came back and we offered their findings, he made no comment. So obviously, nice as he is, he wouldn’t stand up and be counted thus qualifying for a place on the road map.

    I am a little lost about what we CAN do, as lay people, not medics, to get this data revealed. I have tried to tackle a ghost writer I know as an acquaintance but she will not discuss it with me. The Press and media are very cagey about publishing patients’ concerns about this, the Guardian very pro NHS in particular. I would find a road map of exactly who to target and how, extremely useful. My thinking has so far been along the lines of raising public awareness of the dangers and our human Right to be informed honestly of these before accepting a prescription. This could I’d hope lead to a boycotting of medications which would surely cause a drop in revenue for Pharma. Money always talks, as the bottom line.

    I think Susanne made a good point about writing to drug companies saying “I refuse to take your drug if you do not give full access to the data”. But in the end, don’t we need them to be FORCED by Law to open up their records and offer the full data before NICE will allow use of any drug. So, is lobbying MPs and Ministers the way to go? To get legislation for this compulsory revelation of data. We tried approaching Governmeng in 2013, with regular top ups ever since. Including approaching Jeremy Hunt. All are very sympathetic but refer back to NICE and the MHRA as their safety net which apparently, according to them, are there, set up by Government, to protect us. Btw, don’t rely on the Ombudsman service, as Spruce has explained here clearly over time.

    So I feel as though I’m going round in circles and every road I take leads nowhere. What CAN we EFFECTIVELY do? Road map please…..

    • Heather

      NICE is close to completely controlled by pharma. They work from ghostwritten literature, have no access to raw data and never deal in adverse effects.

      The turn to “authorities” – regulators, NICE – is essentially a turn to father figures. One of the suggestions I have repeatedly put forward is getting us to build maps of doctors who listen. Neither you nor anyone else seems to have done this. To build a map you need to take an adverse event you are having to a doctor and get them to endorse it publicly in the form of a RxISK report – and we can enter their name on a Map.

      No-one’s done it. Why?

      D

      • David, I’m confused by what you say here. Some (perhaps many) of us have tried getting doctors to engage with Rxisk by showing a Rxisk report. In several instances I’ve described my outcomes in comments here, and if I remember correctly others have too. I know from experience how frustrating it can be when nothing seems to budge, and perhaps more could be accomplished with greater participation, but the reason it seems like no-one has done this is because the fair number of doctors we have spoken to chose not to engage.

        • Laurie

          Am very aware you and others have tried. This though is the nub of the problem. We need to crack this – get doctors willing to engage with us and the adverse events we are having. I hate to say this is the grown up thing to do – I may be wrong to say it – but in contrast turning to regulators, politicians and guideline writers is a turn to a father figure and in this case an impotent father figure who is not in a position to do anything useful.

          The key thing comes back to you or whoever confronting a doctor with a Why Do You Not Believe Me? If they engage with you in a decent fashion and genuinely persuade you are wrong rather than force you to bend to their will – or gaslight you – that would be fine but they don’t. And you and everyone else can only go mad if you are right but not believed. So The Why Do You Not Believe Me is a matter of sanity or insanity, and maybe life or death.

          It needs lots of us to do this, and then to pool ideas about how to make it happen. I can see no other way to change things – other than the fact I see doctors going out of business if they don’t Man Up soon

          D

  21. David
    As regards doctors and RxISK reports, can I clarify one point. I had a bad reaction recently to Omeprazole PIP. But my doctor said they were already well known listed side effects so she stopped the drug, did not want me to try it again because the reaction was very scary, a RxISK Report was not relevant, because those side effects were already in the public domain on the PIL. (This is certainly the case with the under used and ineffective well intentioned yellow card system). In the case of our son Olly’s death, it’s difficult to pinpoint whether it was caused finally by RoAccutane, or ADs, or antipsychotics or by the appalling goading and withdrawal of treatment of the psychiatrist. His GP can’t do,a RxISK Report for him because he is not here to ask for it, apparently. Can one still do a RxISK Report on behalf of a deceased relative, and when several factors could have resulted in the patient’s death?

    • In terms of building a map of doctors who listen – the only way on to the map is a doctor files a rxisk report

      D

      • Has not a single doctor filed a Rxisk report yet? Not one?

        I did try to get my GP to do one, but he became defensive and nervous about it, and kept asking questions about who Rxisk were. He did later write me a supporting letter though, acknowledging Citalopram could well have caused my persisting sexual problems, which I have sent to Rxisk in support of the EMA petition. He is also now sympathetic to the idea that PSSD may be real.

        I can try again RE my GP and the Rxisk report.

        • S

          In 6 years or so, there has been a handful of reports. You are right however to flag up the fact that a number of docs linked to the PSSD petition have written supportive letters. And I guess there is the issue of Who the Hell are RxISK – maybe we need to do some thinking about how to overcome this

          D

          • Yes, this was what put him off. He knew nothing about Rxisk apart from what I told him, and was a little sceptical at first.

            One idea might be a template letter from Rxisk explaining about what Rxisk is about and how the GP can help. The letter would ideally have NHS headings, and signed Professor of Psychiatry at the bottom etc. The patient could then maybe take this to their GP. Then the GP could not dismiss the patient so easily I feel.

            It was this letter to my GP from you Dr Healy, that made the difference in changing his mind, and he was then prepared to try referring me to a neurologist, and also then to write the supporting letter.

            As soon as GP’s see official NHS letters signed by doctors, they are more likely to engage I feel.

          • – Its also a toss up whether to send the blogs as attachments to everyone i lobby at first attempt because they are obviously shocking ,very stark for some people as a first contact if they know nothin about the issues to start with..or that this kind of activism is going on I refer them to the blogs instead or offer to send them attachments if I get a response – a rare event. It’s tricky – they need to know how bad things are – but without being scared off so do what i can anyway

  22. Did anyone hit on this link?

    [9] https://twitter.com/drdavidhealy/status/1009846500787150848

    Are the Scottish Government raising the risk of Suicide?

    What to do about Suicide

    June, 20, 2018 | 64 Comments

    https://davidhealy.org/what-to-do-about-suicide/

    Auntie Psychiatry July 23, 2018 at 7:39 am

    Brilliant!

    Never get out of the boat … absolutely goddam right…

    unless you were going all the way …

    https://www.youtube.com/watch?v=_4dFDBYWuTc

    ‘Those of us who have had our own, or our dear loved ones lives destroyed, been incarcerated, ridiculed and abused, forcibly drugged and then exiled from society by the ineptitude of primary and secondary care doctors at recognising akathisia and incompetence at differentiating SSRI induced toxic psychosis from functional psychosis, afford you our utmost respect and gratitude.

    Those less “fortunate” are dead.’

    https://www.madinamerica.com/2016/11/antidepressants-increase-risk-suicide-violence-ages/

    ‘It now comes as expectation, rather than surprise, to have a sincere and caring GP admit: –

    “I have never heard of it”.

    I suggest, all the comments are read –

    TRM123, did his absolute best in this respect …

  23. Heather and David – I was thinking more about sending the prescriptions back to doctors, The drug companies don’t give a toss if people are harmed or die so wouldn’t give a toss if thousands of us sent them prescriptins with ‘no consent possible’ messages.
    How about sending them to the college of GP’s. with a ‘no consent-no take’ message. Also pointing out that the doctor is at at risk of causing harm and therefore legal action as no informed consent is possible under current guidelines. Or even if the person declines to take a medicine without them or the doctor having the data -which will then put them at risk – even if they have made that decision.
    Most people I imagine will need the genuine prescription if they have chosen or need to use medication but copies could be sent to illustrate the message. I don’t get prescriptions but there are images of them on the net which can be copied.
    The GMC is another mistrusted organisation by both the public and many doctors – just like NICE but they have a remit to consider ‘concerns’ as well as ‘complaints. I am seeing how that goes after sending a ‘concern’ anyway.
    Is it worth lobbying local CCT’s – or at least ‘warning’ them that medics are in breach of gaining a legal right to informed consent. Ditto other medical committees I’m not clued up about..

  24. Annie
    Yes, the link you mentioned is brilliant, we did open it, the AKATHISIA coverage is very well extolled there, also the accounts written by sufferers and on behalf of the dead. Your research and finding of info is amazing Annie, you are the perfect sleuth.

    David
    Just out of interest, how many doctors do you have so far marked up on the RxISK road map?

    Susanne
    Thanks for the clarification, and yes, sending prescriptions to doctors makes more sense than to Pharma, sorry to have misunderstood. I’m afraid all I’d say about approaching the GMC is ‘good luck with that one!’. Our experience was more than disappointing, it was actually enfuriating. And we’d approached them with a report which an eminent doctor friend and her psychiatrist professor had tinkered with, to make sure it hit the spot and could not be ignored or sidelined. Big surprise even to them when it was abysmally stupidly dismissive and did nothing to address a heinous wrong in treatment.

    Going back to RxISK reports….the bottom line and reason for the shorthand of these is surely (as many of us would agree) that we are all b****y terrified of upsetting our doctors. Because without them and their support in times of ?need, we fear being alone on the sea of illness with no paddle for our canoe. And maybe David you are right, they are not arrogant in the accepted sense of the word but from medical school days they seem imbued with a belief that they know better than the patient about what’s best for them. So when I have proferred a RxISK Report it has been brushed away with ‘why is that necessary’? Or ‘I do the yellow card reports, is this yet more bureaucracy and form filling I haven’t time for’. With eyes hardening by the minute.

    I did a hunger strike when I was 18. It was to try to get treatment for my manic depressive father, who needed sectioning but was extremely clever at making out he didn’t. He drove around the countryside recklessly at speed in a state of euphoria, buying up anything his eyes rested on, with money he didn’t have. He threatened to throw us out of our home, and to shame us in front of the world. There were no women’s refuges in those days. Friends backed away in fear. But, having a brilliant mind like that of a barrister ( he wasn’t one) he could talk himself out of any situation and leave chaos in his wake for the family to clear up, in further shame. My mother was told by our GP that if the child (me) could be shown to be being adversely affected by his behaviour, the doctors could then do something. So I began my hunger strike as a protest. It didn’t change a thing. It just got me branded as being very stupid. My mother then succumbed to breast cancer a few years later and died. My dad was a really decent reasonable guy some of the time. I looked after him, clearing up his annual chaos, till he died 8 years later. Even his severe heart problems did not curtail him when he was in full manic mode. It was like he had the energy of a fit 17 year old himself. I was no match for him and his quicksilver manipulative mind. So, if I thought hunger strikes would work, even now, in our current crusade, I’d have a go, but I don’t think they would.

    In the end, no one is listening. Maybe if we find that the sudden death of Mya Lecia Naylor the 16 year old beautiful popular and loved CBBC television presenter, is prescription-drug related, and the evidence is not hidden, that might open some eyes and ears. It is only celebrity connections that seem to capture public attention now. And I don’t think doctors, if they really are already so powerless, are worth trying to capture the attention of. What will they do anyway if we do?

  25. As some may remember, I tried in vain to get an apology from Dr. D. and had multiple conversations with him about the drug injuries. Eventually he fired me from his practice. I had been his client for something like 15 years.

    Tried multiple other psychiatrists and they didn’t believe me either.

    My current psychiatrist seems willing to discuss my drug injuries but it’s too little too late. Why do I have to pay her large sums of money and take off work to educate her? She takes no initiative of her own to look into any of these things. She has the same flawed arguments that they all have to my position. Haven’t felt like shelling out a ton of money to try to convince her. Or recover from the appointments emotionally. The odds are I won’t be able to convince her, given what I’ve encountered the past 6 years. I’m not giving up—just don’t think this method is effective.

    One of the other psychiatrists that I didn’t stick with wanted to charge me some hourly rate to read materials I had prepared for him on my drug injury. It wasn’t that much stuff that I had brought him—just a timeline.

    Doctors aren’t curious. They don’t think and use their own minds. They aren’t aware of their biases and fears.

    Can’t find anyone to add to the map because they all think alike.

  26. I feel very bad about not having had any success with helping to get doctors on the RxISK ‘helpful listeners’ map, despite my somewhat admittedly nervous efforts. I never take medication unless I have to, (or visit a doctor unless I have to) so I have no recent AD reactions except the Omeprazole one. I guess I’d rather do a hunger strike even now, than face the withering wrath of a sarcastic doctor who can undermine my argument during my allocated 7-10 minutes at a stroke. I’m afraid (sorry to say but it won’t be news to him, infuriating as it must be) that once one nails one’s flag to Dr Healy’s mast, GPs and Consultants start huffing and looking pityingly at me. They also stop listening. This is of course really tragic, both for them and for us. But over history, those trailblazers trying to be heard, trying to save others with important warnings, have always been castigated until suddenly, for some reason, their truth becomes accepted.

    As Dr Healy says, he is not anti-pill. Nor am I… I admit that when my father, truly manic in a manic depressive episode, was so terrifying that we (my mother and I) had to try to contain his behaviour in order to survive, we did dally with the idea of cutting up Largactil tablets and hiding them in his food but we didn’t dare because if he’d realised, his fury against us would have been even worse. Since those days in the 1960s I’ve been keen to understand what brain mechanism turned this very charming, intelligent, good father, temporarily into a terrifying bully whose actions threatened each year to bankrupt himself, us and even others, or possibly run someone over in his car. . The medical fraternity, including his GP brother-in-law, seemed powerless to stop him or to help my mother and me to help him, as he couldn’t have Lithium because of his serious heart condition as apparently it would have killed him. In his ‘normal’ days he actually wanted to take Lithium as it would have saved him from the deep depressions he’d plunge into after a 3 month bout of manic behaviour. He used to say he’d like to go off in a puff of smoke. He would rather have died on Lithium than lived like he did ‘sky high or deep depression’ every year without failure. Worse on Largicatil actually, but them, worse with age, so difficult to be sure. He was on Digoxin always too.

    My whole life till I was 32 was devoted to trying to live around and help this afflicted man who changed from being a Dr Jekyll to a Mr Hyde regularly. After Art College, which was terminated because of him, I started training as a PSW to see if I could help by understanding better what was going on and why he couldn’t be helped. It didn’t seem, in the end, that there was anything to be done unless we understood the mechanism that caused the condition and relieved his and our pain. Many manic depressive people are kicked out by their families and are sleeping rough in our cities, homeless and without hope. Their behaviour has become intolerable to their families. Whereas if their exhausted families had had support, even from the community, they might have stayed with them. We can’t surely justify throwing someone away because they suffer from this awful illness? Or from adverse effects of SSRIs etc which can mimic it.

    We’ve got to know WHY the body is out of kilter. Babies are not born manic depressive surely, but could they be born with a propensity for too little sodium. Is that why my dad as a boy wanted to eat handfuls of salt. Was his body telling him something. Because who could possibly get any pleasure from eating handfuls of salt?

    Medical opinion in the 1940s (when my father first got mentally ill after a life threatening pericardiectomy) told his wife and GP father-in-law that the sodium/potassium balance was wrong in his body and this had caused the manic depression. As a little boy he used to eat those handfuls of salt, hiding under the table with a salt cellar. I used to wonder if that had any bearing on this. By contrast, my son Olly did not manifest any of the behaviours of my father, except that he was extremely academically clever as his grandfather had been, but became ill (low mood, never mania) after taking Accutane/isotretinoin. Roche warn against their drug being given to anyone with a family history of mental illness.

    The reason I was interested in the recent Radio 4 broadcast, mentioned here, called ‘IN THEIR ELEMENT’ is because it discussed sodium channels, the effect on ions in the body, and the way electrical connections fire between neutrons which in turn drive so many functions in the body. The sodium connection again? Like with my father? Plus what I’d studied for years about how the brain has to fend off outside alternating current signals from mobiles, wi-fi etc, in order to allow cells to repair overnight in sleep.

    I have so far proved myself useless in getting a RxISK Report in the bag, but I do feel this sodium/potassium thing could have some mileage in it in understanding the PSSD problem and the PRSD problem. Could my son have developed a sodium imbalance too, and could also all those people for whom antidepressants and other meds have such dire effects? This doesn’t mean that ADs are a Good Thing (though they might have been for my father at the worst of times), nor forgives their creators for hiding data, but could there be a sodium/potassium balance connection in that VERY hidden data that we need to address? If the body needs to have its own inter-cell electrical system working, so that hormones, neutrons, muscles etc etc work normally, and if sodium ions are messed up, it doesn’t. So then could this be why all feeling, mental and physical, seems to have gone, for some people? Could ADs be messing up these sodium levels further? Is anyone looking at this in relation to PSSD?

    And PS, just heard in Radio 4 ‘The Genuis of Accidents’ explaining how a drug being developed to treat angina came to solve erectile dysfunction by accident. The discovery of Viagra. Also now useful in previously untreatable babies’ heart conditions. Then, immediately afterwards, BBC One,’ HEALTH, TRUTH OR SCARE’ Angela Rippon discussing sleep and mobile phones emitting radiation. Electro magnetic radiation is all around us. Graded from Ionising to non ionising. X-ray is ionising. We are being told that mobile phones ‘mostly don’t do any damage to cells to the body’ as they emit non ionising radiation. Pro Michael Sperrin, Oxford Uni. But, 34% rise in brain tumours since 1990s. He says, ‘but is that because diagnosis is better?’ But what is actually causing them in the first place I wonder. Why do so many electricans, (especially those working on pylons), proportionately, get them? Whatever is proven or unproven, we come back to how the individual’s body cell electrical system works, to ‘is any effect on PSSD possible’ and if so, could there be a sodium/heart/brain/muscle connection? Little jigsaw pieces which I just wonder about, as someone with no medical knowledge but a strong desire to find answers.

    • I remember there was discussion about ions on the blog and just found it at Rxisk blog headed ION CHANNELS

      There’s an article in Frontiers in Genetics 2013 May 7th doi 10.3389/fgene.201300076
      Neuropsychiatric disorders with ion channel disfunction – section on bi-polar disorder. Major channels involved in neuropsychiatric disorder and therapeutic perspectives.
      Not sure of the date but there is an article – polinamide derivitives as modulator of voltage gated sodium channels-‘drugs that block voltatge gated sodium channels in a use dependant manner are used in the treatment of bi polar disorder
      You will know more about it than me but just in case hope that’s useful

  27. It’s very tough to keep going in the face of so much corruption and downright cruelty at times. I did bring cases to GMC previously including for others , the individuals were admonished and told to change their practice – three of them were rewarded later by their colleges with promotion, including to ethics cttees and college of GPs cttees. All three had their tracks well covered by friends and those who were more concerned with reputation of the colleges. I did meet some individuals who encouraged me usually behind the scenes but the most played games or advised to give up.. A medical student was also involved in lying but he was entirely let off and became a GP who knew he could abuse his position with impunity. .
    I have done as you suggested and written to medical student groups/cttees – not one response – many of them are not even aware of the work carried out by groups outside the medical bubble.
    My notes, all three files, were ‘lost’ as so often happens when complaints/concerns are raised, after I had comments put on them. At last though many more people are requesting access to their records these days since data protection laws have been updated – it’s ‘intended’ that all will have rights of access to full online records by 2020 including historical records. (Those which are online obviously) We can imagine what hoops will be used by doctors. Some are actually spelt out in the article but there are doctors who have openly in eg Pulse med mag admitted they have even until recently been making insulting remarks on file – which they are worried about as they cannot be legally redacted.
    Some information is understandably not able to be accessed – but the biggest weasel cop out is in the last sentence of E M’s advice :-
    ‘The information commissioner states that there is no obligation that data controllers need to mark where information has been removed or offer any rationale for redaction’.
    When such an imbalance of power is displayed that there is not even an obligation to explain how a person’s medical notes are being recorded – the best option is not to confide sensitive information to a doctor or other health worker.
    It would be interesting to see how many errors in prescribing etc are ‘redacted’ or if reports of adverse events by individuals will be ‘redacted’

    In GP Online – Advice from Ellie Mein medico-legal advisor
    Redacting Information from Medical Records

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