I had to give some workshops a few years ago to media students and either while thinking about what to say or in the middle of saying it, or soon after, it hit me that good doctoring has a lot in common with good journalism.
Both hinge on getting the story right and key to that is having a real person whom others can contact to check out the story they have been told about an adverse event, for instance. To do this, others need to know the name of the person. If an article about a problem mentions an anonymous source, editors and other journalists have to feel pretty confident they could contact this person if need be.
In May 2003, Jayson Blair, a New York Times journalist, was fired for inventing a story with the additional charge that he had plagiarised material. My reaction back then was that we would all be a lot safer if the reports of company trials for drugs or vaccines were reported in the NYT rather than the New England Journal of Medicine. I am less sure of the NYT or other legacy media now.
NYT seemed a lot more concerned about the integrity of their story than NEJM – who regularly tolerate a ghostwritten literature, that commonly makes fraudulent claims about efficacy and safety, based on trials in which the patients might not always exist or if inconvenient have been made to disappear, along with a lot plagiarism about lowered serotonin levels and anticholinergic drug effects. The repeated plagiarism plays a huge part in leading the public and doctors to believe a lot of things that have no basis in reality.
Decades back books like Toxic Sludge is Good for You made it clear that pressures on journalists and media companies mean that many journalists find it easier to just work from copy already written for them by the marketing departments of pharma or other life sciences companies.
At the centre of RxISK’s mission and the PSSD story is the idea that Your Name Counts.
The PSSD Network have since done amazing work to bring this point home to people with PSSD who have been very reluctant to let anyone else know they have the condition. This has helped bring PSSD out in the open. Recently they have also reached out to a lot of media aimed at getting articles in print – ahead of a BBC program about antidepressants that will bring PSSD into the frame.
Part of the PSSD Networks outreach to media like the Guardian in the UK – something like the UK equivalent to the NYT – led to the correspondence below.
Rachel Hall Guardian to S, R and DH
Thanks for this S. I’ve got a commission from our editors now. We might hold the piece while I do more research, or if I have enough we’ll run it on Monday.
To that end, I wondered whether R and David might be able to respond to the following questions by email by the end of Saturday?
What evidence is there that permanent PSSD is a problem and is caused by SSRIs?
What is the connection between PSSD and emotional blunting/anhedonia – do most/all sufferers experience both in tandem?
Why is it not more widely recognized and discussed? Why do some sufferers feel their concerns have been dismissed by medical professionals?
What needs to be done to raise awareness help sufferers, in terms of guidance to GPs/psychs, the research base, wider policy changes? (David, would be grateful for answers from a UK perspective)
S to DH
Hope you are well.
Just checking if you will get a chance to answer Rachel at The Guardian’s questions on PSSD by the end of tomorrow.
DH to S, R and Rachel
This is tricky.
I never respond to journalists who send questions by email and ask me to write their article for them. A bit like giving meds, there should be a relationship before the other person sends an email question and will be able to interpret my answer properly.
There is an outsourcing going on here that loses important detail at every step of the way – from the Guardian to Rachel to me or whoever. Outsourcing from pharma to companies who run trials to ghostwriters and key opinion leaders is what leads to you guys having PSSD. PSSD is not a unique side effect – it’s part of the system that is leading to more and more side effects and more and more denial – with the Guardian a leading denier. The only way to combat this is to insist on relationships with all parties taking responsibility for treating the other party fairly.
Chances are the longer any email answers the more the G will leave on the cutting room floor and the more the final version will seem to me and likely you to be terribly unsatisfactory.
Rachel to S, R and DH
Thanks for making your preferences known. For clarification, I sent the questions by email because I only have Sunday available to work on this article if we are to meet the deadline and I didn’t wish to ask you to speak then.
I’m not aware of any internal stance on the issue you describe so I’m not able to comment. If you’d like to discuss it with our readers editor I’m happy to send you the contact details.
Best, Rachel Hall
Rachel to S
I think it might be better not to speak to David as I am a little confused by his views about the Guardian, which don’t reflect my understanding of how we operate, and they suggest some hostility. When we are pressed for time we often send questions via email, and all the academics I’ve worked with previously have been satisfied with this arrangement, so I’m surprised by his reaction.
I will need to speak to a UK-based academic for this piece though, is there anyone else you would recommend?
DH to Rachel and S and R
PSSD is one of the most important stories in medicine today but it is not a breaking news story. There is no rush to get this done. Another journalist working with me on an important antidepressant story has been working on it solidly for a month. This is the kind of input needed.
It is bad journalistic ethics to start with a set of email questions. Fixing up a Zoom meeting and then sending an email saying these are the questions it would be good to answer is a better option but really something this important needs much more detailed input than the questions sent in this case.
I had contact from another journalist this morning about PSSD. Someone I know previously but who still felt that as it was a new subject for her, it needed a conversation. I made time – an hour. There will be follow up emails.
But to repeat it does not bode well for an article when the initial overture is a set of email questions.
DH to Rachel, S and R
Thanks to S for the note from him which does not feature here
Thanks for Rachel for responding also. Unfortunately this is the obvious answer to give and makes it impossible to know how genuine it is.
I have tried to alert the Guardian to PSSD for a decade but no joy. From being good on issues like the adverse effects of drugs and vaccines 20 years ago, the G is among the chief deniers of problems now. The Daily Mail’s health page is a lot better.
Tackling a question like PSSD and only having a day or two to do it and sending questions by emails is not the way to do this story which is one of the biggest in medicine in terms of what it might reveal about new mechanisms for drug actions, but also the devastation company approaches have inflicted on people – knowing about this hazard for nearly 40 years but doing nothing about it and compounding the problem to the point where people who mention it to doctors risk being detained under the mental health act.
I’ll be very happy to talk to any journalist from any source about these issues who has a brief to take this issue seriously
S to Rachel, DH and R
In the past, we have noticed a problem where the seriousness of PSSD is not accurately represented in articles. It is often downplayed as a mere “side effect”. We do have some concerns similar to those expressed by Dr. Healy regarding the tight deadline.
We also believe that a story about PSSD should not be hurried. It requires careful and thorough discussion with the individuals being interviewed, as this is a complex matter.
PSSD is an extremely sensitive and traumatic topic for sufferers and if the seriousness of PSSD is in any way misrepresented, this could be too much for some to deal with. Sufferers have a history of being gaslit by medical professionals which leads to repeated trauma.
PSSD is often dismissed as ‘the underlying depression’ even though this makes no sense as genital numbness is the most prominent symptom. Even after persistent sexual dysfunction post-discontinuation was acknowledged by the European Medicines Agency in 2019, some still try to blame ‘depression’ or mental illness in general.
PSSD is also a completely different beast, we’re talking about the complete removal of any arousal response in the body, as well as physical numbness in the genitals to the point where some can’t feel themselves peeing. People describe it as if they’ve completely lost all interest in the opposite sex, this is a far cry from what depression induced low libido is.
Rachel to DH, S and R
Thanks David, we certainly do intend to take the issue seriously, I haven’t come across any challenge in that respect. Can I ask who you’ve contacted previously? Different parts of the Guardian work very separately to each other.
In terms of our health reporting, I can confirm side effects are definitely of interest to our national news journalists as I work with them, though it’s worth mentioning that they are absolutely swamped covering an enormous volume of health news. There can be all sorts of reasons why a story isn’t picked up.
Would you like to speak by phone on Sunday? Let me know and I’m happy to arrange.
DH to Rachel, S and R
I’m happy to talk to anyone about PSSD. Sunday is possible… Good if you can let me know what times work for you – the earlier the better
Phone Goes Dead
A Time was set by Rachel – who later pulled out.
S’s initial suggestion to Rachel included contacting Josef Witt-Doerring. He gave a link to an Interview about PSSD that Josef and I had done
Josef was likely sent very similar email questions. He responded.
Although not directly asked I’ve got a few thoughts:
1) Evidence for the permanence of sexual dysfunction comes from the assessment of numerous case reports assessed by regulators. EMA and Health Canada have now updated the package insert labels as they believe this risk rises to the level where all physicians prescribing the drug inform patients about the risk.
2) The cognitive/emotional problems have been overlooked by many, this is because they “blur” in with the underlying condition the drugs may have been prescribed for. However, they are completely distinct from the typical depression/anxiety. For instances they can be states of severe emotional blunting (not feeling anything), there is also a complete absence of motivation/drive for many. This is a consistent pattern of observed symptoms. When you speak to suffers, these psychological symptoms are unique from the original symptoms that resulted in them taking the drug.
3) The condition is not widely recognized because it was only recently acknowledged by drug regulators in the last few years. Even when they updated the labels, they didn’t enact a risk mitigation measure to get the work out (e.g., requesting that dear health care letters describing the new risk be sent to all family med docs/ psychiatrists). The reality is that most MD’s don’t frequently read drug labels so they would not be aware of the update.
4) Regulators should first acknowledge the risk, and then drug companies and regulators should initiate a risk mitigation campaign to tell physicians who use these drugs about the new risk so they can use the information to counsel patients on whether they should use the drug. I believe the correct measure would be a “dear healthcare letter” to all practicing GPs, gynecologists and psychiatrists.
Hope this helps,
What’s Wrong With This?
You could easily argue there is nothing much wrong here. Why couldn’t a journalist just cut and paste what’s hear.
I have a colleague I respect more than almost anyone else who insists on emailing his contribution rather than talking, figuring perhaps he can control the narrative that way. But it doesn’t work.
Its tricky for me to suggest anything might be wrong with Josef’s responses because he and I also get on well and have a joint mission to raise the profile of drug hazards. The last thing that would be helpful is for us to fallout. I should have, but haven’t, checked with him that he’s okay with me showing his response.
The problem is that the email questions set an agenda and Josef hasn’t responded by telling Rachel she has this all wrong and needs to dig deeper – or equally doesn’t give her the chance to challenge him and what we could call his ‘bias’ or her the chance to challenge me and my biases.
Rachel’s questions close the door to anyone telling her the media have played a big part in the problem. I and others have presented this story to the Guardian, the BBC, the NYT and other outlets on multiple occasions in the last decade. We’ve been brushed away with responses that we don’t want to put people off getting the benefit that antidepressants can give them.
Another door closed with her questions is that this is not just a mental health and antidepressant problem. Again and again even people suffering adverse events see the problem as a mental health one – this creates a mental health ghetto. Sufferers often make the problem worse by calling for their specific drug to be banned.
The problem we all have is that while the media are not too bad at rotten apple problems they are useless at rotten barrel problems. The challenge to Rachel has to be to work out how to avoid giving people the impression that now that this rotten apple (Great White Shark) is getting thrown out of the barrel (has been killed) you are all safe to go back taking drugs (get back in the water).
The so called left leaning, or liberal media, like the Guardian and New York Times are worst of all. This stems from a bias – it should not be a privilege of wealth to get on treatment to save your life. This was a laudable bias but is now a problem with the Left only seeing the cost of drugs as the problem when getting the price down only means we will end up on more drugs and die earlier from polypharmacide.
What used to be viewed as a more right wing media, like the Daily Mail in the UK, are now much better when it comes to laying out a balanced view of drugs and health issues in general.
Now – is a point in time where it has become a privilege of wealth to get off treatment in order to save your life or avoid disability.
When it comes to health, the idea of being able to hold two contradictory things in mind and still function – like bringing good out of the use of a poison – which used to be a sign of a sophisticated mind, is not something the Left can manage. They prefer official narratives that figure medicines can only do good – other than idiosyncratically.
And the job of a public health system is to get you more access to more drugs. Industry learned to milk systems like this ages ago.
A real investigative journalist – there are few around in health these days except in the Mail – just like a real doctor (few of them around too) would attempt to get to grips with this rapidly worsening situation, where life expectancy and reproductive rates are falling and handed a problem like PSSD would tell the editor, or service manager, that this is the story of the decade, even more than Covid and needs far more input than a few hours between here and Monday morning.
Especially as solving it looks like it stands a chance of giving us better antivirals and anti-cancer drugs.
To Be Continued