Last week’s RxISK post on Assisted Dying proved something of a Rorschach test. People read diametrically opposite messages into it.
It was written at the same time as Something Stupid This Way Comes and cross-referenced this. This I thought made it clear that there is no such thing as Treatment Resistant Depression (TRD). TRD is a phenomenon created by antidepressants – in particular by the SSRIs and later antidepressants that are just not particularly good – except for making money for pharmaceutical companies by keeping us in or creating states of chronic misery.
I still think that just reading the two posts together would make it clear that people with TRD should be up in arms rather than Going Gentle.
As a double-lock on the interpretation, I had thought that introducing the article by Udo Shuklenk would make that clear. Udo is a nice man but, as hinted, he likes taking provocative positions.
I thought his article in this case was a great example of how letting bio-ethicists anywhere near many rather straightforward clinical questions can lead to a car crash. Bio-ethicists regularly miss what is going on and often end up doing a wonderful job for pharma. They have advocated for giving antidepressants to pregnant women when pharma tip-toes around the issue. And now Udo is advocating for assisted dying for people with TRD – not realising its a marketing creation and a consequence of treatment rather than a “real” medical condition.
I didn’t want to come straight out and say his argument badly missed the wood for the trees. But there it is. I’ll send the link to Udo to make sure he reads this and the previous post and can comment if he wishes. Most readers would like Udo in the flesh but I can’t predict responses to whatever he might say.
Get on the Train
Another bone of contention was the issue of Not Going Gentle. Healy are you advocating that people become suicide bombers or sacrifice themselves for the cause?
Far from it. But again the post was perhaps less than clear. This issue got picked up by PSSDers in particular.
The RxISK Prize was put in place as one contribution to stopping people with PSSD committing suicide. There have been several lately. There is a desperate need to give people with conditions like PSSD some hope that someone recognises their problem and is trying to remedy it.
While people on forums have done a huge amount trying out different options, and doing their own research, we need to get a wider community involved. Researchers, lured perhaps by the idea of winning a Nobel Prize. This is not a wild idea – anyone who finds out how some drugs can have enduring effects after they leave the body may well have come up with a way to design safer drug therapies.
If I had PSSD or another enduring withdrawal problem, I’d have more hope if I thought there were a number of laboratories around the place working on the problem. Even if the work is only coming up with ideas about what is likely going on.
But part of our difficulty now is that the System can depend on us all, whatever our creed or race, to get on the trains heading East to work camps where we will be looked after. It began with the mentally handicapped and mentally ill – good Church-going doctors, like Hans Asperger, could be depended on to eliminate them. But it then extended to pretty well all of us, who didn’t quite fit in with the Systems plans.
In the 1940s, some of us could emigrate. Others took to the woods. But most of us, then and now, get on the train, assuming that someone up there somewhere will realise a mistake has been made and will put things right before it’s too late. We don’t see any other option.
We know that if we question them, this will be seen as a clear sign we are under stress, emotionally disturbed. (Nothing to do with the position they have put us in). A few years back it would have been safer for them to wonder if we were perhaps periodic. For 200 years, it was safe for them to portray Ireland as female (emotional, irrational, borderline) compared with the English John Bull – see 329: A Study in What.
If we raise our voice, we just prove their point.
Or the latest wheeze is to brand anything we say as Fake News and refuse it airtime.
Die on Your Feet or Live on Your Knees
If there is a mental illness here – they have it. But treating it/them is clearly a problem. That’s what Do Not Go Gentle was about. It was asking – how do we restore insight? They slap hysterical women across the face – what can she/we do back?
- A Lysistrata strategy – google it.
- Forums – the PSSD and PFS Forums have done great good in supporting people. Unlike many other patient groups, these conspicuously lack Pharma support.
- Slogans – Anthems – Imagery. RxISK is full of it thanks to Bill James but so far it hasn’t impacted.
- Symbolic public action – hunger strikes (an Irish invention), disrobing – as people have just done in Britain’s House of Commons.
- Boycott – an Irish invention.
- Nan Golden has close to brought Purdue Pharma to their knees by starting a boycott art galleries that take Sackler Family donations.
- Petition – RxISK has sent them into FDA and EMA.
- Reverse Boycott – a RxISK creation.
- Suzanne commenting on 329: A Study in What has just proposed getting scripts for antidepressants – easily got – and posting them to the regulator saying “can’t take unless I can see the data – where can I or my doctor get to see this.” If thousands did this… sending a letter asking for a response.
- Have a dedicated Publishing Imprint – plans are in place for this.
- Doctors putting a Backstop in place – see 329: a Study in What?
- Legal actions – only happen in the United States and usually if your Attorney General is a woman
- A RxISK Map of doctors who listen – but everyone seems too scared to get involved in this or perhaps there are none.
An important part of any response is analysing the problem. Without an agreement about what is going on, it difficult to get people to co-operate. Within RxISK, there are efforts to get an analysis in place.
The ultimate RxISK response is Taper MD which won’t help anyone who has TRD or PSSD but might prevent people getting these and other problems in future.
Losers avoid Losers
I’ve got lots of friends and family and others well placed to help out with finding solutions to many of the problems RxISK tackles. Well placed to help things go viral. But they don’t. They think I’m obsessed. The chances to have any conversations with them are closing down rather than opening up.
This must happen to people with PSSD and other conditions even more than it happens to me.
I have or have had better media contacts than almost anyone but there are fewer and fewer replies to emails. Why? Because the media can do rotten apple in a barrel problems – the one rogue doctor or drug. They can’t or won’t do a rotten barrel problem – or don’t know how to. It’s fine to vilify Andrew Wakefield but try hinting that NICE recommend drugs for teenagers who are anxious or depressed that they know can’t be shown to work and increase rates of self-harm and the media bottle it. They do so on the basis of ghost-written articles but no media take on the academics whose articles are written for them by ghostwriters that lead to more deaths and injuries than AW was ever responsible for.
Ditto with politicians.
The deepest problem of all is that drug wrecks, like AIDS, divides us into the fortunate and unfortunate. We are unfortunate if we have an illness and doubly unfortunate if we end up with a drug wreck – drugs for most people are sacraments that can only do good. The Heavens must really be against us if we are drug wrecked.
Primo Levi recognised that people didn’t wanting to talk to us if we had been somewhere like Auschwitz – people stop listening if you mention it. We are the damned, they are the saved – and desperate to close off the route to Hell.
Drug wrecks pierce the veneer of modern science. We don’t worry about women becoming hysterical if they are taking an SSRI, just like we don’t worry about epileptics if they are taking an anticonvulsant. If either tell us they have stopped their meds – we worry.
This is a more primitive division than rich and poor, male and female, Irish and English. The herd leaves losers like us behind. Even losers leave losers behind.
Besides the AIDS community, one of the most inspiring examples of losers turning things around recently has come from Indian and other women disfigured by acid attacks inflicted on them by men, who have banded together to raise awareness of the problem, reduce its incidence, and support each other.
As I write, women in Sudan are taking on the regime there.
The answer probably lies with women. All the more reason why they in particular should not go gentle into that dark night.