Here We Stand, We Can Do No Other

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November 7, 2017 | 28 Comments

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  1. In a very short time over a third of the prize is there – I think that’s a stupendous achievement. When more and more sharks with even bigger mouths are circulating it is even more urgent to find a cure if little fish are to be saved. Accusations that DH is ‘banging his own drum’ are being proved wrong – that could be turned around to make a good slogan’ Banging the Drum for Rxisk; truth not lies’ Sharks don’t like loud noises. Richard Bilton did another good exposure last night so have written to Panorama to ask if he and his team could do an in depth investigation with the help of Rxisk. They should have ‘learned lessons’ blah blah after the Saville cover up so the BBC owes the public this. I am of course a tiny fish who can be ignored. Was checking something on PLOS and found they have banned James Coyne from publishing I wouldn’t have known otherwise that PLOS is banning blogs. The editors gave an untrue statement saying it was by mutual agreement, which he publicly denies. So much for open journals. The government is presently focussing more attention on children – let’s hope the usual culprits who circulate around committees and departments with jobs for the boys and girls are not given free reign or we are likely to find yet another drug specifically to be used for children is being produced somewhere. Fucked. by prescription drugs, from Cradle to Grave would not be a good slogan in years to come.

  2. Another excellent explanation of what’s going on. How much longer can things go on without a change? I suppose the answer lies with the answer to ‘how long is a piece of string?). With all that we see happening almost every day lately, do you think that there is a possibility that the public will wake up soon to exactly what is going on?
    I still feel that the change will have to come from us ( the whole community, not just those injured) rather than from the top. Having said that, we seem to need one unnerving news break to start a real shakeup. I have no ideas about how that should happen – but it needs to happen fast.
    Maybe we should learn a lesson from the ‘harassment’ issues that are in the news lately. We all know such behaviour is unacceptable – yet many have known of the cases and done nothing about it. In our working lives, most of us have worked under the ‘power’ of either an individual or team. Both harassment and power can be used to the good – they will get the best out of us, ensuring that our work remains at a high standard. It is the misuse of both that cause untold damage. Personally, I feel that an individual should feel confident enough in ANY given situation to speak out about an injustice – be it to themselves or to a co-worker. The misuse of harassment and power destroy both the culprit and the victim. It is the stuff of bullying and cannot be described in any other way. Putting up with it is allowing ourselves to be worthless.
    If we take that to our relationship with our doctors and they, in turn, with the regulators and pharmaceutical companies, we can see a similar pattern. The main difference is that we, at the bottom, find it hard to work out whether to blame the middle, or the top layer, for the injustices that we see. Furthermore, we find it so hard to convince the remaining public that there is any injustice in the first place. The same is true of many doctors it seems. If we were lacking in confidence, this would be enough for us to turn away and accept the situation as being as it is and unchangeable. But we do have the confidence, especially now, of the Rxisk site, information and campaign behind us. Things ARE on the move, slowly, and we must accept the challenge as it is presented. We cannot expect the top layers to suddenly cave in but, surely, the more we can move forwards the more likely it is that someone from the top layers, somewhere, might one day spill the beans on all that is so wrong with our systems of power in medicine.
    Now that the ruling party in the UK is in disarray, would it perhaps be the time to bombard our MPs with news of the RxISK campaign? I get the feeling that they are clutching at straws to quieten the never ending storms that are whipping up around them.

    • Further to the above comment, we in Wales have been shocked today by the result of accusations made against an Assembly member. Carl Sergeant, a hard working and well respected member of the Assembly, took his own life.
      He was well known as the champion of the vulnerable in north east Wales – worked tirelessly to support the homeless and drug addicts.
      We do not yet know about the accusations – except that they were concerning his personal life. If there is any truth in the allegations made against him, by however many women, I say again that if those individuals had been strong enough to put a stop to his behaviour at the time of it happening, there is every chance that we would not be mourning the sad loss of Carl tonight.
      It is because of tragic loss of life, caused by companies and individuals who put wealth above wellbeing, that we fight on despite knockbacks. We will never know whether Carl Sergeant had indeed caused misery to women around him but we know, with certainty, that none of those who we have lost or seen maimed ever did anything wrong – all they did was trust their doctor’s word.

  3. I don’t know what can be done. It all seems rather hopeless to be honest. Like trying to fight the roman empire with a few of your friends, with just sharpened sticks as weapons.

    Surely things can’t be this hopeless. There must be a way this condition can be acknowledged.

    Is this article saying that given enough time the doctors will go from treating patients reports of adverse affects as anecdote and not to be taken seriously, to treating patients reports of adverse effects as the most reliable way of measuring if a drug is causing a side effect?

    Much like mothers were eventually seen as the best indicator of whether there was something wrong with the child, rather than being dismissed as neurotic.

    Or is this article saying that my life was ruined by PSSD, and the establishment is never going to believe me or take me seriously, no matter what I or anyone says?

    Which one is it? Is it all hopeless? I am a bit confused.

  4. I know there are highs and lows with most campaigns and Rxisk is working against huge defended interests so although it is easier in some way for me as I am not a sufferer Spruce I can only say that pessimism and doubt is reasonable but I am with Mary when she says misuse of power can be used for the good. It has generated a lot of support which nobody could have anticipated – I wold love to know that even a few psychiatrists/doctors are in support though. If the research group in Milan could give a bit of encouragement that might give more hope for you.

    Do you think referring a case to the GMC would do any good? They would not be judging whether the drugs caused the problems but whether people are being prescribed without informed consent. Whether adverse effects reported by individuals have been documented and reported. They are also in breach of obligations to treat with dignity and respect – a disciplinary offence which would lead to advice to change practice not striking off. Mary – there is no sign of the Chair of the Health Cttee Sarah W taking things forward, I wasn’t expecting much but it may be worth informing the other members of the cttee individually?

    • Thanks Susanne – emails just gone to Labour members of Health Committee requesting contents be shared with all MPs, especially those on Health Committee. Emails also gone to Jeremy Corbyn and Owen Smith as well as Welsh Assembly’s Carwyn Jones and Hannah Blythin. Also contacted our local MP by message. We’ll see what, if anything, comes of it all.

  5. A couple of observations on this post:

    1. Don’t assume that your medical Notes are a safe source of the truth, the whole truth and nothing but the truth. After a death which the relatives suspect was caused by medical negligence involving prescription drugs, those Notes may be carefully ‘doctored’. We were warned of this by a sympathetic GP. We did not believe that in upright and honest UK, this could be allowed. The GP was correct. But it takes a long period for the relatives to get possession of those Notes, by which time much creative writing may have been done.

    2. Sadly, our other trusted belief was that the GMC, apparently recently much more aware of needing to be fair and open minded towards patients as well as doctors, blatantly in our case, was not. We were appalled. So, be aware. It’s a reasonable idea Susanne to try them out as you describe, but I wouldn’t expect much.

    3. This week we can see already how power in various segments of society is stacked against the vulnerable, the trustingly honest, the law abiding. Spruce also voices the frustrated total despair of so many of us about the SSRI damage. But DH shows that we have to keep standing up for what we know IS the truth, because ‘We Can Do No Other’. Look at the groundswell we have now, that we did not have even a year ago. Keep believing that, however outnumbered and however set up we may feel now, we will change things. Because word is getting around, and catching fire. The world is being set alight by our united resolve. We are not so low down powerless as we might think.

  6. Re GMC – Don’t just rely on notes made kept by the doctors on files – keep detailed records with dates; who was spoken too etc Files have a habit of getting ‘lost’ when complaints are in the air. The GMC has it’s ups and downs depending unfortunately who is on the panel..but if people raise concerns rather than complaints there is a better chance of getting an acceptable decision. It is also a way of getting the message heard amongst another group of people – and there are some who have an understanding of ethics and unbiased considerations. It is definitely worth trying – it will take a lot of energy and time – tell it how it is. If they are not told they cannot know.

  7. “WHY DO YOU NOT BELIEVE ME”?

    Beside the newly placed statue of George Orwell outside the entrance to the BBC Headquarters is engraved his compelling quotation: –

    “IF LIBERTY MEANS ANYTHING AT ALL, IT MEANS THE RIGHT TO TELL PEOPLE WHAT THEY DO NOT WANT TO HEAR”.

    We have indeed the right to tell our prescribers of the injuries, even of the deaths caused by prescription psychoactive medications, even though they do not want to hear.
    The toxicities discussed here have been hidden from them, and from us, by data manipulation, ghost written clinical trials (endorsed by Key Opinion Leaders) and hidden again by the revenue collecting regulators who are allegedly concerned with patient safety.

    I believe we also have a duty to tell prescribers and to keep on telling them.
    Do they have any other honest and experienced adverse drug information available to them?

    Having spent forty years prescribing “in good faith”, I feel deeply concerned with regard to the I trust afforded to the ADR information formally made available to me.
    When concerned or unsure, we had expert drug reference centres available to provide us with authoritative opinion, but where did they get their information from other than clinical trials, “expert opinion” and perhaps all those areas which have failed those of us who post on the RxISK BLOG.

    George Orwell might have written these words for RxISK had he lived in a later era.

    We insist on the right to tell prescribers WHAT THEY DO NOT WANT TO HEAR.

    It is vital that we continue to do so, with increasing confidence and self belief.

    “On the plus side the more open he is, the more interesting his job is likely to be”.

    “On the plus plus side if he doesn’t pay heed to you soon, he is going out of business to be replaced in the short term by cheaper prescribers – nurses and pharmacists and soon after by robots”.

    “We have to find a way to help him see this”.

    The RxISK PRIZE empowerment will surely help us find the way.

  8. Great investigative research carried out by UK journalists to expose tax evasion lately – have mailed International Consortium of Investigative Journalists to ask for help for RXisk. videos are a good help too thanks.

  9. Here’s an idea. I don’t know what things look like where you live but here in Ohio people are literally dropping in the streets every single day from opioid overdoses. Our state was FORCED to address this issue, and like many others is now suing pharmaceutical companies.

    They just came out with a toolkit for people to use to get everyone up to speed after pharma companies misled doctors. Of course, it doesn’t say that, but there are educational materials here for doctors, too.

    http://takechargeohio.test.ohio.gov/toolkits/Healthcare-Professionals

    We’re used to doctors telling us that what’s happening isn’t happening. But isn’t a campaign like this solid proof that they don’t always know? Is what has happened with these pain medications as unique as they’d like to believe, or can this be a wedge in to letting them know a little bit more about why they don’t know what they don’t know?

    I’m wondering if a crash course like this might be a good prerequisite to a RxISK Report.

    • Laurie

      This is great stuff. Something like this is certainly needed for polypharmacy generally and hopefully we have something coming out soon – TaperMD. But it seems to me that in the case of PSSD and other adverse events that doctors refuse to take seriously its more like another of your ideas – Rape. Which is all very topical now. Am going to try and go back on some of your earlier ideas and see in the light of the Weinstein and other cases whether there is a way to put things.

      David

      • If Rxisk takes up Laurie’s idea for leaflets and posters would it be poss to use a small amount of the prize money – with all the donors consent of course – to produce some adapted for Rxisk – for circulation asap? I don’t think everyone has much spare funds to make enough themselves.

        • At the moment I’m inclined to stick to the line that not a cent of any donation goes into an overhead of any sort. But as mentioned in a response to Laurie – having looked at the materials I think this maps onto a polypharmacy rather than an adverse event issue. Something like this would work well linked to TaperMD which hopefully will be available soon. I think the issues for PSSD sufferers are more like Rape – how to get heard.

          D

        • Susanne – would you like a copy of the RxISK cards that I use? As explained before, they are credit card sized, bi-lingual and laminated. They are purely RxISK.org – not to do with the Prize. If you happen to live in Wales (for the bilingual bit) or would like it in English only, you’d be more than welcome. I would be prepared to do the same type for The Prize instead of the Welsh piece if you preferred. You’d then have one side for Rxisk and the other for the prize. I could either send through David or direct to you if you ask David to give me your email address. Anyone else would be welcome to a copy too, of course, but please don’t expect anything fancy!

          • Mary – that’s so thoughtful of you thanks very much. Fancy isn’t my thing! Could you put a copy of your card up on the blog? as I’m not in one place for a while. That’s such a brilliant idea especially in both languages – what abot people in other countries could use your card with their own language on the back?will do what i can then about circulating them soon. thanks again much appreciated .

        • I was only suggesting that since doctors can no longer deny that they were, in fact, mislead by pharmaceutical companies, we might highlight this reality for them when reporting harms. It might be enough to have a couple of carefully chosen pages opened up to show on a laptop.

          • Isn’t it a pity that we can’t offer a mentoring service for those who wish to report harm but find the thought of doing so intimidating. I’m sure that each one of us who comment here would be willing to accompany a patient to an appointment. The actual reporting would, obviously, have to come from the patient but we could be there just to throw in our bit of knowledge to second the patient’s words. For sure, as much as we may think it should work, it isn’t going to be accepted HERE that’s for sure – if they are totally in fright at the thought of a ‘peer support group’ they’re hardly going to welcome an ‘expert by experience’ into their consultation rooms are they!

  10. How to get Herd ..

    Very attractive new Video

    Sometimes its nice to give something and to develop this video idea further wondered if creating a DVD to send to all and sundry might be an idea. Pharma give out mugs, pens, notepads, etc. could we give out a disc containing all Rxisk info

    Trouble is things are moving so fast on Rxisk.org that its almost out of date the day after, but, to have something tangible to give medics, media, mps, etc. might be a nice touch.

    All things can be put on a disc, labels can be made, blank cd boxes can be bought and voilà, you have a Rxisk Presentation in a Box

    There is a continuous loop tv with this, that and the other in most large surgeries ..

    https://rxisk.org/prize/

    We have new graphs with Australia and Canada and more $$$s

    Raping patients of their sex life is a serious business ..

    TaperMD as suggested sounds good…I am really not sure that Tapering Kits, sanctioned by MHRA, done in isolation, is a terribly good idea for those sitting at home .. alone ..

    https://www.change.org/p/6755234/u/21949309?utm_medium=email&utm_source=petition_update&utm_campaign=179116&sfmc_tk=xjoQ5Xb9tpFl0gfg1oEJp3rjZSNi4W%2bj8Gl9hgJTk%2boxl8KhKEbswVigT5arWPSP&j=179116&sfmc_sub=199109631&l=32_HTML&u=33339926&mid=7259882&jb=2

    • I think tapering kits – if they provide the availability of tablets of varying strengths plus liquid formations to support even further – will be a wonderful addition to anyone thinking about withdrawal. However, providing such as part of a package – a detailed plan to be followed – just will not work as each individual’s speed of withdrawal is going to be different. A forum entirely for support through withdrawal may be an idea to do away with the isolation perhaps? We need to wait, I suppose, to see exactly what is being offered.
      You have some fantastic ideas in this comment Annie. Is all the information that we read under ‘Prize’ now on the Facebook page? I don’t use Facebook – hence the question, but so many do and if all who see this information there shared it will all their friends, that should spread the word without it getting ‘out of date’ as you say.
      Another thought that has crossed my mind is to do with Christmas presents. I’m sure many of you will be aware of sites where you can donate to certain charities instead of giving presents at Christmas/ birthdays/ anniversaries etc. How about presenting some of the recipients of our presents this year with a little card – along the lines of :- “This Christmas, we have donated (x amount) of your Christmas present to the Rxisk campaign, to help in their search(etc……),we know you would love to be a part of this important project. Do you think your family and friends would accept this? I’m not sure what Shane will have to say if he reads this! I know of some who have paid for goats in far off places as birthday presents and some children have an animal in a far away land which is being protected with a donation which went in lieu of presents. After all, you can purchase a bit of the moon to give to someone as a present – I think I’d feel far better about the prospect of a cure being found rather than owning a bit of a place I’m never going to visit!

  11. I have signed up for the marathon this morning for April 2018. My effort to support the rxisk prize campaign is called ‘Run Against Castration’.

    I just made the facebook page and I need your help… Which post (they are identical text wise) should be there? all the pictures or not attached to them are different.

    http://fb.me/runagainstcastration

    (is the attached link pictures also too graphic for facebook and community rules?)

    • Good on you Daryl – a great idea. I have no idea of the rules of Facebook or other social media so can’t really comment there. The only thing I would say is that I’m not sure about your ‘ for paedophiles not children’ bit. I would rather see you sticking to the harms you’ve suffered rather than throwing their use onto others. After all, if they WERE used in that way, we don’t really have the evidence that they would work in all cases do we? Please don’t take this as a criticism – I’m simply trying to look at the picture from both sides. Your ‘run against castration’ phrase is great – because that is exactly how you feel you have been left. Good luck!

    • Mary this is a brilliant example by Daryl because it shows the medical profession “ARE” aware of the PSSD side effects of SSRIS.

      Just proves Dr’s lie to victims.

  12. Some Sharings .. help us spread a new short speed ..

    PSSD – Professor David Healy – YouTube

    https://www.youtube.com/watch?v=Ke9Q5i97PHE
    06/11/2017 · PSSD – Professor David Healy PostGradWEST. Loading … RxISK Prize – Professor David Healy – Duration: 3:38. PostGradWEST 1 view. New; 3:38.

    whocaresinsweden
    7 hrs ·

    Hjälp oss att sprida en ny, kort informationsfilm!
    Med stor sannolikhet känner du någon som är berörd.

    Help us spread a new, short speed!
    Most likely you know someone who’s concerned.

    https://www.youtube.com/watch?v=Ke9Q5i97PHE&feature=youtu.be&app=desktop

    Propecia Kills‏ @PropeciaKills 6h6 hours ago

    Dr. David Healy talks about Post FInasteride Syndrome.

    MiA shared Around the Web

    https://www.madinamerica.com/2017/11/vampire-medicines/

    Most likely you know someone who’s concerned ..

  13. Re TaperMD .. fight for life ..

    A troubling pharmaceutical cocktail | Dee Mangin #WalrusTalks

    https://www.youtube.com/watch?v=QQkV7yHuQ-s

    What a great idea to use Poly Records for Poly Pharmacy ..

    c/o Rxisk.org newsletter Nov 17

    PFS Fight for Life!

    News – Dauerhafte Nebenwirkungen von …

    Translate this page

    post-finasterid-syndrom.de/aktuelles

    RxISK Prize Campaign. Neben dem PFS gibt es weitere anhaltende Syndrome wie PSSD (nach der Einnahme von Antidepressiva der Klasse SSRI) und PRSD (nach Einnahme von Akne Medikamenten auf Retinoid Basis), die vermutlich eine gemeinsame Ursache haben. Um eine Heilung für diese zu finden rief RxISK Mitte September 2017 den …

  14. Those who have been impacted severely by these medications, need a human rights lawyer.
    Believe me, if I knew of anyone who could defend us all, I would make sure you would all be cared for by the people who will fight for you.
    No amount of money would ever make up for what we have been through!
    If we are able to change the culture, one which is based on compassion and acknowledgement of what these medicines are capable of inflicting and have everyone who prescribes these medications warn each and every consumer of the serious side/adverse effects, then I believe we are onto something good.
    Then the big fish would not need to swallow the small fish, anymore!

  15. We need to be organized and strong somehow. And I don’t know how but we have hundreds of thousands just shunned and injured ,displaced all over web cause that’s all we got , hanging onto support groups . The medical community needs to see faces of the people they harmed , and they need to answer the bell.

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