Members of the British parliament
In October 2019, we were contacted by a British PSSD sufferer who had done some excellent work in getting his Member of Parliament (MP), Steve McCabe, interested in the condition. We were informed that Mr. McCabe wanted to get a large group of MPs together to try and get some support for sufferers and hopefully stimulate interest in finding treatments. He was in the process of contacting people such as the health minister and NHS England.
We contacted all UK based PSSD sufferers on file, asking if they would write to their MPs to ask for their involvement. Unfortunately, a general election at the end of 2019 meant everything had to be put on hold as some MPs might not have been re-elected. Steve McCabe was re-elected and so this seems like a good time to restart the initiative.
We need as many of British people with PSSD as possible to write to their MPs and ask for their help. A template letter is provided. This can be adapted if you are a friend or relative writing on behalf of someone else who has PSSD (or PFS or PRSD). Also provided is a copy of a letter from Professor Healy to Professor Rasi at the European Medicines Agency, to be enclosed with your letter.
Even if you are not planning to write it is worth downloading these two letters – you may figure there are better ways to do things than we have suggested here.
It would be good to send a copy of everything to Mr. McCabe as well as your own MP. This will help to keep him in the loop and should also make it more difficult for your MP to ignore you.
For those who have already written to an MP, you might want to chase them up with another brief letter to remind them that the initiative is still very much ongoing and that we are looking for their involvement/action.
PSSD isn’t just a UK problem and therefore this initiative shouldn’t be limited to the UK. Our 2018 paper on 300 cases of enduring sexual dysfunction included reports from 37 countries across six continents. We now have close on 600 cases.
It would be wonderful if anyone reading this from Italy and Germany which have very active groups lobbying on this issue, as well as anyone from any European country, the United States, Canada, South America (Brazil in particular) and elsewhere in the world, did something similar – getting in touch with their local political representative.
BBC documentary not going ahead
Also in October, we were contacted by a journalist involved with the BBC. They were looking for people to take part in a new documentary about the difficulties of dating while taking (or after stopping) antidepressants due to sexual side effects including PSSD.
They said “The BBC understands that this is a very sensitive subject matter to discuss and will be considerate of this during filming. We can certainly approach filming in a way that would make you non-identifiable if desired.”
We contacted all of the UK based PSSD sufferers on file and some of you expressed an interest in taking part. Unfortunately, we have since learned that the BBC is no longer making the documentary, although we understand that the journalist behind the project intends to pursue the production of the documentary elsewhere.
There have been other approaches by the BBC and to the BBC and the general message from them is that they don’t want to put people off taking their antidepressants. This is truly weird and the media would not act this way with anything else in the world we buy or take except medicines.
Published papers
In the last few months there have been several new published papers involving PSSD that may be of interest if you haven’t already seen them.
The first one was “Post-SSRI sexual dysfunction: Patient experiences of engagement with healthcare professionals” – see this blog post for more details. As the title suggests, it was a study exploring the interactions between PSSD patients and healthcare professionals when trying to seek help for the condition.
Next was “Post-SSRI sexual dysfunction & other enduring sexual dysfunctions” which was published in Epidemiology and Psychiatric Sciences. It outlines the persistent sexual problems following antidepressants, finasteride, and isotretinoin. The paper is open access and can be viewed on the above link.
The third paper was “Post-SSRI Sexual Dysfunction: A Bioelectric Mechanism?” by Healy, LaPalme, and Levin. It presented the finding that a brief exposure to an SSRI induces long-lasting changes in the bioelectric cell properties of planarian flatworms (an important model for human neurophysiology and pharmacology) and suggested that this may contribute to the enduring effect seen in PSSD. The paper is available online but behind a paywall.
In January 2020, “Antidepressants and sexual dysfunction: a history” was published in the Journal of the Royal Society of Medicine. It included details of PSSD and can be viewed on the above link. This also features in a video, Antidepressants and Sex: a strange story, which you can access.
RxISK reports
We are continuing to receive a significant number of RxISK Reports about PSSD. If you have the condition and haven’t yet completed a report, please consider filling one in so that we have your details on file and can contact you if there are any initiatives that you might be able to get involved in.
We sometimes receive reports that just say “PSSD” in the main side effect description. As this doesn’t give us enough information, we try to follow these up by contacting the person for more details. Unfortunately, we often receive no response and so these reports have to be excluded from our list. If you are completing a RxISK report, we would be grateful if you could provide details of your symptoms rather than just writing “PSSD”.
RxISK prize
Donations to the RxISK Prize seem to have stalled at around $63,000. Thank you to everyone who has donated so far. We had hoped that a lot of people would donate small amounts and therefore there would be little financial burden for each donor and the target would be easily reached. However, the donations to date have been made by a smaller number of donors who in some cases have given huge amounts of money or set up regular payments. We have also received significant contributions from people who don’t have the condition, but who wanted to help.
Over 150 individuals have donated to the RxISK Prize, but nearly 600 people have reported PSSD, PFS and PRSD to us, which adding in their relatives and friends means we could reach the target if everyone involved gave $10. If we could reach the target of £100,000, it could help to make an impact when trying to gain the interest of journalists, politicians, and lawyers.
Some people have suggested that even if the $100,000 target was achieved, it wouldn’t be enough money to fund studies into a complex problem like PSSD – but this isn’t the point. One of the problems with standard research is that a study can typically only investigate one thing at a time, and at the moment we don’t know exactly what to look for. It would be very easy to spend $100,000 on a study that would tell us nothing.
However, there are already people working in areas of science and medicine who may hold important keys to better understand PSSD. For example, the recently published paper in the journal Bioelectricity introduced the condition to scientists whose work involves the electrical properties of cells – something that may be involved in PSSD. Having a $100,000 prize would encourage people to think about how their own research might help to provide some answers.
The RxISK Prize is an still onoing venture and we hope that people will continue to donate. To learn more and to donate click HERE.
Retractile testicle on SSRIs?
This item has nothing to do with PSSD, but this seems like a good place to mention it.
Retractile testicle is a medical condition in which one of the testicles is intermittently pulled up into the body by an overactive cremaster muscle. The testicle can appear as a small lump under the skin of the lower abdomen and has to be gently pushed back down into the scrotum.
Retractile testicle is typically regarded as a naturally occurring problem that happens in some people, but we have reason to suspect that it may also occur as an SSRI side effect – most likely during sexual activity.
It may disconcert anyone who experiences it and wonders why it’s happening, though like many unusual SSRI side effects, the person may not connect it to the drug they are taking. At this point we don’t think it continues after the antidepressant is stopped.
If you began to experience retractile testicle after starting an SSRI despite having no previous history of the problem, please tell us about it by leaving a comment below or better again filing a RxISK report.
Let us know whether it went away when you stopped the drug.
[It would be great to ask Harvey Weinstein about this – a number of the women who have accused him of assault have described his genitals in detail and the descriptions are not inconsistent with this].
bob fiddaman says
I think Shelley Jofre caused such a shitstorm with the ‘Seroxat documentaries’ that the Beeb won’t go there anymore. Shelley, in essence, highlighted how utterly useless the MHRA are and how corrupt GSK are.
We also learned three significant numbers from Shelley – ‘329’
Shelley also, later down the line, did an excellent expose on the link between SSRIs and shootings, again, she caused quite a stir, so much so that the SMC cabal went into a frenzy.
The ‘ankle-biter’ is one of the last great investigative journalists…
annie says
The ‘Politics of the BBC’ and should ‘Netflix’ be the ‘go-to-truth-telling-leader’ leaving behind the ‘Grassy Knolls’…
‘What File on Four ended up was a combination of the irritatingly anodyne and bizarre.’
Prescription for Murder? the last Great Clarion Call from the BBC
It was largely misunderstood and the lobby groupings having a meltdown in denial
The four Panorama programmes on Seroxat, you would have thought, would lead to even greater exposé. All subsequent programmes about SSRIs/antidepressants have been tepid with much of what needed to be said, ending up on the ‘cutting room’ floor…
In the Name of the BBC
July, 31, 2018 | 33 Comments
https://davidhealy.org/in-the-name-of-the-bbc/
‘But the timeline of what happened between Holmes’s first prescription of sertraline and the shootings wasn’t explored at trial.
When you scrutinise that timeline, it raises serious questions about the role of the widely prescribed antidepressant.’
https://www.bbc.co.uk/news/resources/idt-sh/aurora_shooting
Monday, 11 June, 2001
http://news.bbc.co.uk/1/hi/health/1382551.stm
Anti-depressant addiction warning…
The ‘Politics’ has much to answer, for…
.
chris says
Had sertraline a few times and ended up in A&E at 3am. It was the beginning of my decent into psych drug induced horror. At that time my mind was full of my career as an architectural photographer and my clients, didn’t think twice about trusting my GP. That trust almost killed me, ruined my career, got me labelled as having serious ‘mental illness’ which will never go away, 6 months in a psych ‘hospital’ hell hole which told me very clearly that psychiatry is still a eugenics movement, almost made me homeless and I’ve no doubt that drug turned Holmes. And yep Psych has BBC as a sock puppet.
dopagon says
I want to send a letter to my MP but my issues are not predominantly sexual. Instead I was left with permanent emotional numbness from fluoxetine.
I believe it is paramount that the loss of emotional and hedonic capacity is made known,but how am I supposed to convince my MP that emotional numbness from SSRI’S is a recognised condition when the only official terminology fails to reflect this in its title?
I fear I will be disbelieved if I participate in this campaign and may even hinder it.
Dr. David Healy says
I suggest you modify the letter and say something like “I,and many others, suffer from enduring and permanent emotional numbness which is believed to be closely related to the genital numbness that causes PSSD and is also linked to suicides”.
It would be helpful if you could file a rxisk report and state emotional numbness as your problem. It might be time for us to start collecting these also.
There is no question that emotional numbness, anhedonia, can be as bad or even worse that PSSD but various forms of emotional numbness and depersonalization can be caused by a range of different drugs making it a far more difficult problem to unravel. If we find what reverses PSSD we will almost certainly have something that reverses the emotional numbing that SSRIs can cause but maybe not a range of other anhedonic states that treatments can cause.
David
Crank says
I have since stopping isotretinoin experienced this retractile testicle phenomenon. Never experienced prior to isotretinoin. Is a semi-regular occurrence since.
Lara says
Appeal to those involved in PSSD who have not yet made a (even small) donation to the Rxisk Prize: how about making it now, even just 10-15 dollars as a sign of participation and a touch of gratitude? It does not mean paying Rxisk, but it is a fund that will come in handy for us, and this fund in the hands of Rxisk will be in the right hands. Who is really listening more to our voice than David Healy? Who is working harder for recognition, awareness and lines of research about PSSD?
Personally on social networks groups of PSSD sufferers I have often tried to encourage activism (each in its own way) and involve in some initiatives, but it seems that most of people in the groups do not want to do anything at all and this is frustrating (it almost makes you want to send everything to hell!). It would be noteworthy to leave anonymity, but it is difficult for everyone. It would be noteworthy to fund research, but it is difficult for everyone. Let’s do what we can at least.
I think this: bothering to donate 15 dollars to the Prize or to share a PSSD video or to comment under an article or forum, contact a journalist or a specialist or a researcher or a politician … ok, probably we do not recover from PSSD thanks to this, and perhaps never. But if we all did something of this, hopes would increase. We seem so few also because participate few, but we got that (skimpy, I know) update sentence in the information of the drugs, even in so few!
Do we want to try to be more? “156 supporters” is now (when RxISK has almost 600 PSSD reports). Let’s try to increase this number; let’s not just think about the immediate return, let’s put some trust and meaning in this and in anything else for which we can make a little effort to do to demonstrate that PSSD is a serious and important problem for us. Towards the goal, we give dignity and meaning to the journey.
mary H says
I second every word in your comment Lara. We all, whether sufferers or not, need to put all our efforts into reaching the target amount as soon as possible as we can then tell the world “we did it – the prize, in full, awaits a successful researcher”. Whilst the amount remains rather static it is very difficult to encourage ‘new donations’ from the general public. However, if we can see this rising gradually, week by week, we will then be in a better position to push onwards to the campaign goal. Let’s all put in one last, almighty attempt – we may even shock ourselves!
mary H says
I have just put some money where my mouth is! Rather, we as a family have. When the new £20 note came out earlier this month I made a suggestion, that maybe the first to get a new note could ask the other 3 of us to donate an old £20 note to the Risk Prize Fund. Shane’s younger brother had a new one today, so he’s rounded up £60 from us and, fair play, he’s donated his own brand new note too. £80 donated tonight!
Heather R says
This comment isn’t so much about PSSD but it IS about PRSD and the BBC and MPs. We were a little surprised to find out, last night, that even a BBC One programme like ‘Question Time’ is censored and not quite as ‘live’ as we had believed.
One of our group of bereaved parents, Derek Jones, a tv producer himself who made the film ‘Dying for Clear Skin’ with another of our group (who’d lost his young doctor son Jon Medland in 2004) in 2012. Derek was in the audience last night. It just so happened that it was the ninth anniversary of Derek’s son Jesse’s death by suicide, after taking RoAccutane isotretinoin.
Derek has worked in the past with Mentorn, the company who produces ‘Question Time’ which may have helped him get a seat in the audience and chosen to ask a question linked to the Caroline Flack issue and suicide. We have reported it on the Facebook page last night of Olly’s Friendship Foundation, and you can see the entire BBC programme on Iplayer, but Derek was very disappointed to find that it was pre-recorded and that a lot of what he said was cut for the general viewers. Fiona Bruce was apparently very nice to him but she mentioned the word RoAccutane when he’d got started speaking and said ‘we can’t talk about that.’ He also mentioned the example of Annabel Wright aged 15 who died last year. All that was cut out too. He didn’t realise how much power probably the lawyers have over what is said, whereas the viewers assume it’s going out uncensored in a programmed like that. At least the Studio audience will have heard all he tried to say, as will the panel of MPs and journalists.
Derek did speak to MP George Eustace afterwards, who’d been on the panel, along with Michael Portillo. George Eustace said he’d enable Derek to see the Suicide Minister. But many of us have done that… it’s quite clear that the BBC do not want medications like isotretinoin discussed more than in tiny snippets.
I wonder if Annie could work her magic and put a link to Question Time BBC One. 20.2.20 herein case anyone wants to see it…
mary H says
As we watched Question Time last night, you immediately came to mind as Derek spoke! Funnily enough, watching him, I got the feeling that he’d not finished all that he wanted to say when the camera moved away from him! No one knows better than David about ‘cutting’ what you have to say to the bare bones I guess! It happens over and over again. I remember when, in 2002, Shane’s Seroxat story was deemed newsworthy, that, after chopping to the bare bones what we, Shane’s family, had to say, they then turned to David, speaking from the BBC studio in Bangor. As David got to the point of explaining exactly the effect Seroxat had had on Shane, they suddenly lost the connection!!! The picture became a still picture of David, then disappeared. Lost the connection? I doubt it very much!
So many TV programmes deceive the viewers. For a few years, we attended Antique Fairs (an attempt to get Shane comfortable amongst people actually – we’d buy at auctions and sell at the fairs) at which they would record Bargain Hunt (BBC again). That was an eye opener! Viewers are led to believe that the teams go off to spend their £300 – that is so far from the truth! Researchers go round the stalls early in the morning and buy the items. Much later, the contestants and experts go to be filmed at the relevant stalls! The only part which is real is the ‘expert’ going round to hunt for their ‘bonus buy’. Knowing that has rather spoiled what was previously a favourite programme of mine. I add that simply to illustrate the fact that they will ‘deceive’ us on many topics, not simply on mental health matters!
Daryl Brown says
Did Derek mention the generic medication name or the companies brand trade name for the medication? I know they will likely censor it anyway but on the spot it might be good to use the generic non patented names. It is surprising how much drug companies hold sway over speech though because on the same show panelists mentioned other company names in specific isolation like Sky TV and daily mail I’m sure gets mentioned by guests in negative lights as commonplace in isolation especially on the radio.
I contacted my MP reminding him that he said he would try and speak to Steve McCabe MP in parliament but he or his team said the have closed the matter once again. Very very upset. I have re-reminded my MP of his promise, every where you turn that is supposed to help there is a stonewall where they block your voice.
I am pretty devastated on this MP response this morning because I have spent half a decade writing to these neighboring MP’s on the matter where all they want to do is get their student assistants to close the case. I am extremely upset by that, it is my birthday tomorrow my whole 20’s was left in the abyss of sexual kidnapping by mental health services and extra torrid physical harm. I hope we can get the Rxisk prize moving again, to be honest the all parliamentary PSSD group is my final hope beyond that and in my opinion as demonstrated by the parliamentary group for mental health secriatat being run by royal college for psychiatrists interest guild and rethink for mental illness sponsored by drug companies, politicians can’t be trusted.
The all parliamentary group for mental health’s purpose statement says “To inform parliamentarians about all aspects of mental health.” but I doubt they will ever strain a cuticle in effort to represent us. They sound like effective paid and bought MP Lobbying on drug industry behalf to me, people with mental health disabilities don’t matter, we are here to be harmed and made money off of.
I have lived with PSSD for nearly 10 years now I have tried so many harmful and extra traumatic expensive quack therapies and none of them worked, they all made me worse, more physically injured some of that seriously and a lot poorer. I think more people with PSSD should stop following the fruitless cycle that I further endured and get behind the Rxisk Prize reaching it’s goal for PSSD. The media attention it would bring so they cannot ignore us as easily would be preciously beneficial.
tim says
Thanks for this Heather.
I have just watched Question Time. The above starts at 23 minutes.
So much for “Freedom of Speech”.
I would have found this editing profoundly distressing if I had found an opportunity to try to increase knowledge and awareness of prescription drug induced “suicide” and had the courage and commitment to speak out on the anniversary of such loss and suffering.
For so many of us who comment here, any news of alleged suicide, and/or acts of extreme violence leaves us asking: “What were they taking”.
For those who have direct experience of AKATHISIA, and the resultant extreme changes in emotions, feelings and behaviours;
We who have seen gentleness transformed into previously unknown aggression, and observed those with no mental illness whatsoever labelled for life, and “treated” with drugs that increase the intensity of this toxicity:
We are driven to try to increase AKATHISIA awareness to the point where even those on the panel are asking the same question.
A level of awareness where the suicide minister, and every coroner is asking “WHAT WERE THEY TAKING”?
How can we ever reach levels of knowledge, insight and awareness that protect others from akathisia induced maiming and “suicide” if those who have the fortitude to fight are silenced by editorial subservience?
annie says
Absolutely, astonished, Heather, at this political gaming …
Question Time
https://www.bbc.co.uk/iplayer/episode/m000fk6x/question-time-2020-20022020
A bit more ‘magic’ …
Teenage antidepressants ‘doing more harm than good’
By Shelley Jofre
BBC Scotland health correspondent
5 February 2018
https://www.bbc.co.uk/news/uk-scotland-42917452
Dr Morris, a consultant psychiatrist at Aberdeen’s Royal Cornhill Hospital, said she was “absolutely astonished” by the way Prof Healy had interpreted the literature on antidepressants.
Peter’s wee film
https://holeousia.com/in-the-world/a-sunshine-act-for-scotland/pe01651-prescribed-drug-dependence-and-withdrawal/pram/
This chimes well with changes that have affected those addressed by Politics and PSSD; what have the drugs done, and how important it is to research permanent life-long changes and damages and continue to speak up and not to be Muzzled by Political Gaming … and posturing..
A very worthwhile comment, Heather
susanne says
I saw the programme Heather and was impressed by the way Derek had managed to introduce the topic – but then was completely duped by what you now reveal – that Questiontime. without informing the public censors what is broadcast. The way it was cut gave me the impression that Derek was hesitating and feeling nervous about identifying and blaming the prescribed drug – which all kudos to him he managed to do by name ,the cutters must have missed that – instead Derek’s piece was left emphasising the possibility of mental health problems unrelated to the drug. Clever!I now realise the same thing happened to a young man who was asked to make a comment and who described the way he was shaking as Akathisia – but was cut in a clumsy way that he was made to look foolish and to the uninformed. questionable himself. I did think that both he and Derek had been planted in the audience by an org or group to take advantage of highlighting the issues – but had no idea they were planted there by the programme and then had their comments cut. It is disgraceful Thank you so much for putting us in the picture Heather Thing is if this gets out will others be put off from trying again – and is that the real intention? I have been duped myself by editors and journalits on R 4 and a Welsh newspaper which managed to scew what i said by stitching different parts out of context and of course no right of reply – Many Congratulations on your article in the paper – there is an astonishingly honest journalist working there ! How did you manage it?
Heather R says
It takes a lot to severely depress me, but I find myself sunk in despair right now.
That unexpected pruning of what Derek Jones had sincerely tried to say on what we assumed was pretty well LIVE ‘BBC Question Time’ shocked him, me, and many of the others of us bereaved by suicide after the use by our young, of RoAccutane isotretinoin.
Yes, Daryl, Derek only used the generic name ‘isotretinoin’, he’s a tv producer and film maker himself and he knew that using the word ‘RoAccutane’ would be dangerous. However as soon as he said his son became psychotic after using isotretinoin, Fiona Bruce chipped in with ‘Ah, that’s RoAccutane isn’t it, we can’t talk about that,’ and that was the end of Derek’s chance to say more that would not be cut out afterwards. The questioner had used the epithet about ‘being kind’ in connexion with the recent suicide. Derek’s words were geared to that. He went on to ask how it was kind to give young people, (some as young as 14 in the case of Annabel Wright who was given it then and died when she was 15) a drug for acne that is known to be so dangerous for many of them, with such terrible side effects? Annabel’s death was well documented on Channel4 News, along with a consideration of the startling most recent MHRA figures for deaths by suicide ‘and other ways’ (slightly mysterious mention). Was it kind, asked Derek, to give all these youngsters a drug that, even though it seems maybe only to be so dangerous for the few, (and we don’t accurately know that it IS as few as all that) can ruin their mental and physical wellbeing, and kill them in the most horrendous way, their suicide from being so ill. All these words, which I’ve approximated the gist of, of Derek’s, were apparently removed.
What really depresses me, and terrifies me at the same time, is that those running the show, including Fiona Bruce, were really KIND to him. He couldn’t fault them on that score. They were politeness itself and patronisingly nice to Derek, whilst at the same time, kindly taking away his right to speak. But he wasn’t there for sympathy, he was there to say, listen up folks, don’t let this happen to your nearest and dearest. Don’t let medications push them into suicide because they become numbed, mentally and physically ill or temporarily psychotic. Or damaged chemically through no fault of their own. The producers and Fiona Bruce allowed a rant on Immigration in answer to another question earlier, by a lady whose ideas were very right wing and could have been termed inflammatory, but she had a perfect right to air them. So if SHE did, so did Derek have a right to air his.
Who was it, the French guy in history who said ‘I disagree with what you say but I will defend to the death your right to say them?’ I’m so upset that I can hardly think, so have forgotten his name. I, having believed that at least, being so ‘on topic’ and it having taken so much guts for Derek, a sincere bereaved father, to travel there and put his question in, that the BBC can again shut us down about isotretinoin whilst kids like his and ours are dying. It’s bad enough for us activist parents being hounded by the Pharma industry for speaking out, but to be blanked, whilst having our heads patted, by the BBC, the supposed paragon of unbiased free speech (!) is just too terrifying for words. This way, if it means there is never going to be true freedom of speech, we will never get AKATHISIA understood. We will never save those whose lives are wrecked by it. If we can’t even trust a public service broadcaster to whom we pay our not insubstantial licence fee.
I have to say I did suggest beforehand to Derek that if he got chosen, he opened with explaining about suicides from AKATHISIA not just leading with the acne drug but so many other drugs too, but he said he was trying to fit his comment to the framework of the ‘Lets Be Kind’ questioner, as at these moments you have to juggle your planned message fast, to fit with relevance to the topic. Which is so understandable. And the emotion he felt that night, thinking of Jesse nine years before on the beautiful moonlit night when he left a message on his computer and walked out, never to be seen alive by his family again. A wonderfully talented young man who even wrote a description of the horrors the drug had done to him, including killing his libido, depressing him, taking away his capacity to think straight. Ruining his enjoyment of music, girlfriends, etc etc. Just like so many of our young feel or felt till they died.
Thanks everyone for your responses on this. Thanks Annie especially for putting on the link. Not sure where we go from here… an endless uphill struggle and an endless number of young people who will doubtless go on dying. Shame on you BBC.
mary H says
Heather, the most important thing for you to do right now is to take good care of your own health. Once back in good health your ‘fighting instinct’ will return too I feel. We WILL carry on, despite the BBC or any other channel, for to not do so would be GIVING IN to their bullying ways. What you have described is dreadful but if, by treating Derek so kindly to his face, and chopping bits out behind his back (typical bully behaviours), the BBC thought they could kill the message then they made a mistake. We have ways and means of communicating now that go beyond TV and radio and much is being shared about, for example James’ tapering strips, that is positive. I feel that we need to stay positive, as difficult as it often is, concentrate on small steps to a better understanding of what we stand for – which, after all, is PATIENT SAFETY and an end to the horrific HURT caused to so many.
susanne says
Sam – Scram Unsubscribe
10:30 AM (1 hour ago)
to me
Hi there,BBC Question Time
Inbox
Sam – Scram Unsubscribe
10:30 AM (1 hour ago)
to me
Hi there
Just last week, BBC Question Time gave a platform to a woman with some vile, anti-immigrant views. So the Scram team decided to dig into her background, and discovered that the front-row BBCQT audience member is an active supporter of the far-right, including Britain First and Tommy Robinson. [1]
Here at Scram News we work every single day to expose the lies and hypocrisy of our self-serving elites and bring you the stories the mainstream media never will.
Question Time is a “flagship” BBC political debate programme. They not only broadcast this woman’s bile on TV; they then put it on social media for millions to watch and share. This is despite the fact there’s even evidence to suggest that she stood as a candidate for the National Front in the 1970s.
I used to run the social media accounts of a BBC political debate programme – this was a major breach of BBC editorial guidelines.
https://scramnews.com/bbc-question-time-immigration-racist-far-right/
Heather R says
Three cheers for Voltaire.
Where did we go wrong? Is what we have now, truly civilisation? We are fighting for justice and common sense on an unequal playing field rigged against us by everything we’d been led to believe we could trust for its decency and honour. This is indeed a Fourth Reich, and maybe desperate measures will indeed have to be resorted to. Because win we must, and save the terribly tormented and damaged, we must. If we are to live with ourselves as humans, surely. We have to think outside the box now, literally.
chris says
There was a time 20 years ago the BBC had some useful info on their site..
Made-to-Measure Medicine:
news.bbc.co.uk/1/hi/health/704577.stm
“One day it may be considered unethical not to carry out such tests routinely to avoid exposing individuals to doses of drugs that could be ineffective or even harmful to them.”
It’s interesting that we had the BBC Panorama program on the abuse of Whorlton Hall (tip of tip of iceberg of MH abuse) and the very organisation that should have protected people referenced that program as ‘background’ for their closed cultures supporting information for the inspectors. What the heck were they doing:
https://www.cqc.org.uk/sites/default/files/20191104_closedcultures_supportinginformation_full.pdf
It seems to me organisations like CQC and BBC are themselves closed cultures and do stuff that is ostensibly ‘the right thing to do’ for their own image but then shut people down who speak the truth and wish to warn others of this all round horror that has devastated lives, family and friends.
susanne says
Pinned Tweet
Toby Young
@toadmeister
·
21 Feb
“Join me in the Free Speech Union and together we can defeat the authoritarianism and intolerance that is once again threatening to destroy our liberty.”
To join, visit the website http://FreeSpeechUnion.org. Membership fees start at £24.95/year.
This seemed promising ,except the fees ,so was thinking I might refer the questiontime fiasco -but seeing who are running the Union changed my mind Shame as something like this is needed. it might have been useful .Will maybe see what they say about it anyway.
All the right-wing cranks behind Toby Young’s “free speech” union
February 24, 2020
By Kate Plummer
Right-wing journalist Toby Young has set up a trade union to defend “free speech” in the UK.
Days into its existence, the union has already offered to help disgraced eugenicist Andrew Sabisky, who resigned from Number 10 last week and looks set to become a rallying force for right-wing snowflakes whenever they cry about being “no platformed”
Boasting a team of 55 journalists, academics and lawyers, Scram News can now reveal the notable cranks who will be running the union.
With the Brexit Party fast descending into total irrelevance, those who formerly worked for it have flocked to the union. Inaya Folarin Iman, who stood as a parliamentary candidate for the party in Leeds, is one of the directors of the group, while former Brexit Party MEP Claire Fox will sit on its advisory council.
Meanwhile, the group has also attracted right-wing journalists – many of whom have written for publications such as the Spectator, Spiked and Quillette.
Indeed, Paul Staines of Guido Fawkes and Claire Lehmann who founded Quillette (following a career at Tommy Robinson’s alma matter Rebel Media) are advisers, while Douglas Murray of the Spectator is a director.
Another journalist advising the union is Jonathan Kaiman, who resigned from the LA Times over sexual misconduct claims. Another, Zoe Strimpel, wrote an offensive article about stalking which prompted anti-stalking charity to respond with an open letter blasting her.
David Goodhart, former editor of Prospect who was once accused of being a “Powellite” will also advise the organisation, as will Matt Ridley – a Tory peer and journalist who has written articles denying the negative effects of climate change and has advised Nigel Lawson’s climate-sceptic group, the Global Warming Policy Foundation.
And the links to the Conservative Party do not end with Ridley. The group is being advised by Jon Moyinham, a Tory donor who chaired the Vote Leave’s finance committee and has recently been nominated for the House of Lords. It has also employed Mark Littlewood, the director of right-wing think tank the IEA. He was previously an adviser to David Cameron.
The group also has a “legal advisory council” which is made up of prominent lawyers including David Travers QC and Sir Patrick Garland, a former High Court judge. Another lawyer involved, Paul Diamon, wants to repeal the Human Rights Act.
Students are also involved in the group. Sumantra Maitra is studying for a PhD in International Relations at the University of Nottingham and Maya Thomas is a student at the University of Oxford who founded a free speech group and backed Marine Le Pen’s visit to the university. Both will advise the union.
The group is also full of academics, including prominent right-wing political academic Matthew Goodwin and historian David Starkey.
Some of these academics have predictably charming ideas. Nigel Biggar, one of the directors has defended colonialism and Kathleen Stock, a philosopher, once said “trans women are still males with male genitalia”.
Meanwhile, Eric Kaufmann, a politics professor, wrote Whiteshift in which he argued that white identity is under threat due to immigration – ideas that sound eerily like the great replacement conspiracy purported by far-right figures like Tommy Robinson.
A couple of the academics also have interesting ideas about eugenics. Professor James Flynn, whose 2019 book In Defence of Free Speech was cancelled by a publisher for fear it could incite racial hatred, once said that New Zealand had a less intelligent population and so oral contraceptives should be put in the water supply to prevent people giving birth. He also said black people come from a “cognitively restricted subculture” and that “parenting is worse in black homes”.
Meanwhile, Timothy Bates, a professor at Edinburgh University, once said Dominic Cummings’ views on genes affecting IQ “reflects mainstream science”.
Other notable figures involved include author Lionel Shriver and PR giant Mark Gallagher who has worked with celebrities including Elton John.
Radomir Tylecote, a former adviser to the Treasury who was suspended for writing a book criticising the EU, will also bolster the team.
The full list of the motley crew can be found here. We look forward to watching their behaviour closely.
WHO WE ARE
We write news that exposes the deception of populism and the hypocrisy of the elites who peddle it. We run campaigns that allow us to work together to fight back.
Anne-Marie says
Every time I put a comment on the DM now I almost always get red arrowed now. It’s like they have an army employed just to attack anyone with different views to their own brexit opinions. They have also refused to post many of my comments. The people I really don’t understand that voted for Brexit are the poor people. They really are going to get a shock when the truth starts to hit them hard.. Parts of me has resigned myself to thinking we’ll maybe that’s what’s got to happen before things can be turned back round.
It’s the young people I feel for the most. Why should they have their lives ruined, in fact I’m now of the opinion people over a certain age shouldn’t be allowed to vote. They won’t be here in 10/20 years time, it’s not their future to worry about, they shouldn’t be allowed to distroy it for the young people that have to live it.
I can’t see how Brexit will last once people start feeling it to be honest. I give it 5/10 years max before voters will want to go back into the EU.
susanne says
http://www.nogracias.org/2019/10/13/post-normal-science-and-democracy-epistemologic-basis-for-a-new-culture-in-drugs-information/?
Welcome to the Prescrire in English website
Reliable, rigorously independent information on treatments and healthcare strategies,
to enable fully informed decision-making. Prescrire is financed by its subscribers.
No grants, no advertising. No shareholders, no sponsors.
In Prescrire’s Spotlight
Drugs to avoidThe independent French medical journal Prescrire’s annual review of drugs to avoid includes documented cases of 105 drugs authorised in the European Union that are more dangerous than beneficial. The aim is to make it easier to choose safe, effective treatments, primarily to avoid exposing patients to unacceptable harms.
1 February 2020
susanne says
Editorials
Post-SSRI sexual dysfunction
BMJ 2020; 368 doi: https://doi.org/10.1136/bmj.m754 (Published 27 February 2020)
Cite this as: BMJ 2020;368:m754
Article
Related content
Metrics
Responses
Yacov Reisman, sexologist
Author affiliations
Flare-Health, Amsterdam, Netherlands
reisman@flare-health.nl
An important iatrogenic condition, recognised by regulators
Sexual difficulties after treatment with selective serotonin reuptake inhibitors (SSRIs) were first reported to regulators in 1991, but it was only in 2006 that these symptoms were formally characterised as a syndrome, now known as post-SSRI sexual dysfunction.12
In May 2019, the pharmacovigilance risk assessment committee of the European Medicines Agency concluded that post-SSRI sexual dysfunction is a medical condition that can persist after discontinuation of SSRIs and serotonin-norepinephrine reuptake inhibitors (SNRIs). A month later, EMA recommended that product information on all relevant antidepressants should be updated to reflect reports of long term sexual dysfunction after treatment.3
Post-SSRI sexual dysfunction is under-recognised and can be debilitating both psychologically and physically. Symptoms include genital numbness, decreased sex drive (libido), erectile dysfunction, failure to become aroused or orgasm, pleasureless or weak orgasm, and premature ejaculation. The sensory changes may extend beyond the genital area to a …
susanne says
Ten years of clinical trial data cannot legally be hidden from the public, US court rules
BMJ 2020; 368 doi: https://doi.org/10.1136/bmj.m832 (Published 02 March 2020)
Cite this as: BMJ 2020;368:m832
Owen Dyer
Author affiliations
US public health watchdogs have been failing for years in their legal duty to inform the public about the results of clinical trials, a federal court has found.
The US district court for southern New York ruled that an exemption granted by the Food and Drug Administration (FDA) and the National Institutes of Health (NIH) that allowed hundreds of studies to escape reporting requirements laid down by Congress was unlawful.1
Transparency advocates hailed the ruling but expressed concern that its impact could be limited, as the court said it lacked the power to compel the FDA and NIH to enforce existing laws on disclosure of trial results, which to date they have been reluctant to do.
Legislation passed in 1997 required the government to set up the website ClinicalTrials.gov, to promulgate results from clinical trials of products approved to treat serious diseases. But with no
Dr. David Healy says
In general though these regulations apply to bodies like universities and NIH but not to pharmaceutical companies. Bodies who have done research using public money – so pharma gets to see it but the same doesn’t happen the other way around
D
annie says
Nogracias Retweeted
Joan-Ramon Laporte
@joanrlaporte
Professor Emèrit de Farmacologia, UAB; Fundació Institut Català de Farmacologia
Finasterida para la calvicie: insomnio, depresión, disfunción sexual persistente, ataques de pánico… suicidio. No es un cosmético, es un fármaco
“Until recently, the adverse effects of finasteride and dutasteride therapy on sexual function were not recognized or well understood. However, a body of emerging evidence suggests that the assessment of sexual side effects of finasteride in many clinical studies were not accurately captured or reported,” writes Traish.
“It is not surprising that almost all studies published to date do report increased sexual adverse effects,” he adds. “However, even when such sexual adverse events were reported, many argued that the numbers of subjects afflicted are small and propagated the falsehood that the adverse effects do resolve with continued treatment.
https://www.pfsfoundation.org/news/young-men-who-use-finasteride-for-hair-loss-are-at-risk-for-suicide-if-they-develop-persistent-sexual-adverse-effects-and-insomnia-says-new-research/
“The number of subjects experiencing adverse events is neither small nor irrelevant, given the persistent nature of adverse events in susceptible individuals.”
L says
https://endpts.com/abundant-funding-sparse-data-san-francisco-startup-devises-fresh-model-for-rare-disease-drug-development/
https://www.rdmd.com/
L says
Life after antidepressants: Does persisting sexual dysfunction influence quality of life?
Lüning, C.
(2019) Faculty of Social and Behavioural Sciences Theses
(Master thesis)
Abstract
Selective-Serotonin Reuptake Inhibitors (SSRIs) are widely prescribed for the pharmacotherapy of mood disorders and gained much attention for their sexual side-effects. Previous research has shown that antidepressant induced sexual dysfunction may persist upon discontinuation of the therapy, which in turn negatively influences Quality of Life (QoL). As no quantitative studies with large samples are available yet, the present study aimed at establishing the prevalence of persisting sexual dysfunction as well as the relationship between sexual functioning and QoL in a sample (N = 76) of healthy adults. Results showed that 52.6% (n = 40) of participants suffered from persisting sexual dysfunction while 26.3% (n = 20) suffered from genital anesthesia and/ or nipple insensitivity. Persisting sexual dysfunction was shown to negatively influence the relationship domain of the QoL measure (p < .001). Participants with vs. without sexual dysfunction significantly differed in their level of relationship QoL (F(1, 74) = 12.18, p = .001, partial 2 = .141). Therefore, clinicians need to be cautious when evaluating sexual dysfunctions and prescribing antidepressants in order to protect patients’ sexual functioning and QoL.
Full text https://dspace.library.uu.nl/handle/1874/395598
I also know of several Italians who did their thesis on PSSD.
Derek Brown says
Besides sending a RxISK report and donating, any idea how I can get the US government involved in this as an American?
Dr. David Healy says
We have petitioned FDA. Getting a government involved is beyond difficult without something they are trying to cover up and in so doing they make the story.
D
No name says
4 people dead this year until we know
Rob says
I took seroxat for 25 years. During that time, my sexual function was severely impacted, including loss of desire, inability to orgasm, loss of interest half way through sex and so on. My urine stream was also very weak.
I have now been seroxat free for three years. I have never felt better in general, particularly mentally. However, I constantly have symptoms that pop up, plague me for a while, and then disappear. These can be pains, allergies, tremors etc.
Since stopping them, I have had a lot of urinary issues. Pain on urination, pain on ejaculation, general pelvic pain (all of which come and go). My urologist says there is nothing wrong structurally with me.
About 18 months ago, my cremaster muscle starting retracting during orgasm. I could always push it back down, so was never too bothered by it. However, in the past 6 months, it now feels out of control. My right testicle is constantly tingling, and moving around. It feels inflamed and heavy, but there is no inflammation. Often the scrotum is extremely tight. The symptoms come and go almost by the hour. I have no infections, and no other reason for this. I also have no evidence of a cremaster reflex on either side when my thigh is stroked. My sperm often doesn’t look right (yellow with jelly lumps). I also have high amounts of DNA fragmentation.
Dr. David Healy says
These problems are relatively common on and after SSRIs. They can be terribly distressing. Women will often be diagnosed with interstitial cystitis, men with prostatis – in both cases they are told there is nothing structurally wrong. Nothing that shows up on standard tests perhaps but there is no doubt this is drug induced and is not mental.
David