Hilary Cass sent a document to every single MP and Peer, justifying and defending the puberty blockers trial

This ⬆️

That's exactly the kind of thing I mean by extracting what can be seen already from existing data. Each data point contributes to a story through correlation.

They also have not, as many PPs have said, identified their actual, falsifiable hypotheses. If you cannot say what gender identity is, or name precisely what improvement looks like - is it learning to live with their sexed body? Is it becoming more and more eager to surgically alter their sexed body? If it’s anything to do with improvement or maintenance of mental health, why PBs and not SSRIs? - then you do not actually have a rigorous study. Even the most loosey goosey survey study needs to have clear and falsifiable hypotheses - this study does not.

@noblegiraffe , as you think this trial should go ahead, can you answer these questions?

So it’s NOT useful to know if children treated at the Tavistock who are now adults have mental health condition rates triple that of the general population? Or 10 times the rate of certain cancers? Or who have had a thrombo-embolic event prior to 30?

Really? You’re just being silly now. Of course it’s useful.

You can almost guarantee that if the data was available and showed them to be happy, healthy and doing tremendously well then gender clinicians would be shouting it from the rooftops.

A fishing exercise?! 😂

That's what's it's called when you do that! https://en.wiktionary.org/wiki/fishing_expedition

Yes of course people are allowed to have different opinions.The motive for raising concerns is pretty straightforward, to prevent further harm to children.

I admit that I too was curious about your views because on this thread your comments sound as though they’re the kinds that a medical researcher would make to defend the trial on clinical grounds. It might be that you’re in favour of the trial in the belief that it will provide the hard evidence to permanently stop use of PBs, but personally I don’t share that belief.

God, no that isn't.

If you go fishing in any set of data you are going to find things that are above or below average for the general population. That's just obvious.

A fishing exercise?! 😂

No. I would like everyone whose data is being examined to be informed and given an opportunity to opt out.

There is a scientific exemption in GDPR that supports this approach. It's ethical if used meaningfully. The ethical purpose here is to reduce the number of people who need to be experimented upon in order to have an evidence base. We should be looking at every possibility from the data of those who have already been experimented upon before conducting more physical intervention experiments.

Personally, I think the cognitive decline is the one that nobody dares explore because that's the massive can of worms here.

Occam's razor:

• if I remove a part of someone's brain for the good of their mental health, it is highly likely that they will be brain damaged for life and any mental health benefit therefore rendered less meaningful (lobotomies)
• if I stop the development of someone's brain for the good of their mental health, it is highly likely that they will be brain damaged for life and any mental health benefit therefore rendered less meaningful (PBs)

No wonder the NHS no longer says on its gender dysphoria pages that the impact on the developing teenage brain is unknown. If they make it too obvious that it was experimental, just like lobotomies, they will get sued by a lot of people in the future. There are lots of things that piss my off in this whole mess - the removal of those words is in my top 3. It was those words that made me say no to my daughter's request for PBs and look into everything with more depth. If she had asked for them now, all I would have is information telling me we're in good hands and they'll help work out if she needs them or not. Good hands my arse.

And THAT indicates a problem in itself doesn’t it.

“Our linkage study shows that despite bone density issues being a recognised complication of this treatment, barely any patients were being actively monitored for this and had data recorded on their bone health. We recommend urgent implementation of bone density assessments, monitoring and treatment in this population.”

But that’s useful in itself. Because it can be said “at the time of assessment, X% had a significant mental health condition. This is above/below/comparable to the known population data. It is not clear if this is better, worse or the same as pre-PBs due to poor record keeping pre-treatment.”

That tells its own story anyway doesn’t it? It’s not useless data.

Then add “X% of females required regular gynaecological attendance to manage testosterone-related problems.”

”There have been Y number of liver cancer cases, which is above/below/comparable to population rates.”

It’s useful data.

Agreed. But surely the opportunity is to recruit and review those people now?

What I don't understand about the Pathways study is the short term nature of it. A couple of years is not what needs to be understood here. It's about effects over a much longer term.

I think you are way overly optimistic about data collection in the adult gender service records. I can't imagine that they were routinely collecting bone density information on their patients.

Then it’s an observation that people who medically transitioned as children still have mental health problems. This is what they found in Finland.

Did you notice the complete dataset that they used to establish this, the actual measure that they used (not 'still have mental health problems'), and the caution with which they couched their findings? And you think that the scrappy crappy data collected by the Tavistock could provide anything similarly statistically significant?

Why is anyone interested in it? Lots of people seem remarkably insistent that it's a bad thing without their interest being questioned? Are people not allowed to have a different opinion without their motives being interrogated?

Therefore, the absence of mental health deterioration during pubertal suppression is viewed as a benefit.

I’m trying to get my head around this one. How do you clearly determine the benefit of the absence of something? How can variable x be proven by its absence?

Child A with gender/body dysmorphia feels happier at not going through puberty. They get told ‘don’t worry’ we’ll pause those stressful changes. At the end of 1 to 2 years, they’re told so now you have to go through those changes that you were distressed about… and their mental health at this point either does or does not deteriorate. Fingers crossed that counselling means their mental health doesn’t deteriorate at having to go through delayed puberty. But this is a big ask.

Child B with gender/body dysmorphia doesn’t want to go through puberty but is told ‘tough’ they have to go through puberty but they will get counselling to support them through the changes. And their mental health either does or does not deteriorate as they go through puberty.

That conclusively proves what about PBs? Anyone else figure this one out? It’s making my head hurt trying to understand how an absence proves anything.

Then it’s an observation that people who medically transitioned as children still have mental health problems. This is what they found in Finland.

Fishing exercise? It’s perfectly normal to conduct audits of patient populations. It’s the sort of research junior doctors do to complement their training on a regular basis.

“How many people getting a knee replacement are on a GLP 1 agonist?”

”What percentage of people attending our clinic for diabetes also see a vascular surgeon for leg ulcers?”

“What is the rate of renal impairment in people we give this particular drug to?”

It’s not difficult at all.

What's your interest in this pb experiment on children noble? You seem remarkably insistent that it's a good thing.
I thought from another thread that you were a teacher in a school? Or am I mistaken?

You basically want to conduct a fishing exercise in people's personal medical data....what happened to ethical considerations? You have to be specific in advance about what you are looking for and why.

And if they are having mental health problems but you don't know whether they had mental health issues as children because the Tavistock didn't record it, then what?

Fair point, you're right.

Personally, if I had received treatment that could have impacted my brain development and my bone density I'd want to know and would volunteer myself to be tested for both.

Even without additional tests, I would imagine there would be markers in the patients' adult gender service records that would demonstrate how their bone density and cognitive/executive function compare to the average population. At the very least, the data should be made available so that any valuable information can be qualified and extracted from it.

Well, that’s another huge concern. They also have to show benefits relative to the risks

Putting aside the problems of a clinical trial focused on a contested diagnosis that cannot be separated from a questionable ideology. Or how more definitive, non ideological clinical trials have resulted in many scandals where data was misrepresented or cherry picked to ensure a preferred outcome.

Here we have a trial that will also rely on self reported impacts. Yes, there will be the collection of hard physical data but @Tottenhamhotflushes mentioned that one benefit trading off the risks is improved mental health. What happens if both child and parents insist that mental health has been improved? And yet negative physical effects don’t surface or become evident until much later?

There is a huge risk of desirability bias for both the children and parents. What parent will want to admit they were wrong to consent to their child being harmed? Plus, when a 12 year old is asked "do you feel happier now", does no one think their answer is not going to be distorted by the enormous asymmetry in power and competence between adults and children? Children’s responses to adult interventions is complex and complicated. It is never simply question-answer.

This trial feels like another tainted blood scandal all over again where children were recruited ‘for the greater good’ and the life damaging and life limiting impacts will only come to light in 20 or 30 years time. And unfortunately, this trial will do nothing to abate the malevolent or damaged individuals grooming young people online. Why would it? They are not interested in evidence.

And as @BonfireLady points out, with 3000 possible participants, you can then look at population data for your control for things like typical bone density.

(edit to change number of participants!)

But the data linkage study can do lots of things.

How many people are still on CSH.
How many have had mastectomy.
How many have had ongoing mental health problems/crises/admissions.
How many have needed therapy for osteoporosis.
How many have pelvic floor problems (94% likely)
And so on, and so on.

We know that if we don't intervene the levels of desistance are extraordinarily high.

Thank you @BonfireLady. I do really, really understand the desire for and appeal of a shiny, shiny, new, perfectly controlled study. I am a (retired) human behavioural researcher, I know what it’s like to look at all the shitty studies in your area and say, ffs, let’s just get one damn clean set of data.

But I can also confidently say that as soon as your study leaves the paper the proposal is written on, and hits the real world, you had better be prepared for real world issues. You either need to explicitly control for them ahead of time (as you point out, the PB study does not) or you need to learn how to do the type of research that can pull out information from noisy data (like the data that already exists from the Tavistock etc). The latter is harder, but people do that sort of research all the time, because sometimes that’s the only data you can get.

The people who wrote the PB trial, as you have laid out, do not seem to realise that humans are going to human. They have not written a study that is either remotely rigorous enough, or alternatively remotely flexible enough to accommodate that.

They also have not, as many PPs have said, identified their actual, falsifiable hypotheses. If you cannot say what gender identity is, or name precisely what improvement looks like - is it learning to live with their sexed body? Is it becoming more and more eager to surgically alter their sexed body? If it’s anything to do with improvement or maintenance of mental health, why PBs and not SSRIs? - then you do not actually have a rigorous study. Even the most loosey goosey survey study needs to have clear and falsifiable hypotheses - this study does not.

They can simply compare both bone density and brain development to the general population. Likewise with mental health outcomes.

The data linkage study can't do this at all. It's looking at records that are held on people who went to the Tavistock, it's not calling them up and asking them to do brain scans and bone density tests.

Having read her letter in full, this seems to be the heart of her experiment (see also screenshots below):

• 226 children will have their puberty stopped for a fixed period. Some for one year, some for two.
• during that time, they'll have lots of tests to see how badly and quickly if their cognitive function declines
• they'll stop the puberty blockers after the time period and will resume normal puberty
• many years later, we'll find out if this 1 or 2 year puberty blocking permanently impacted their bone density and brain development, or if both of those things catch up

But Hilary.....

• what about the ones that decide to go onto cross-sex hormones?
• will you stop recording their long-term health and take them out of your data set?
• if you keep them in, how will you separate out the impact of your experiment from the impact of the cross-sex hormones that they go on to take?

She's living in cloud cuckoo land if she thinks that she'll have a majority that don't go on to take cross-sex hormones. The whole point of why these children want their puberty blocked is so that they don't develop secondary sexual characteristics commensurate with their sex, because they have been taught to believe this will make them happier. The myth that they can go through opposite-sex puberty by taking cross-sex hormones hasn't gone away. They'll be left believing that their inevitable cognitive decline will sort itself out with the magic of cross-sex hormones because that is the lie that they are hearing constantly from TRAs.

This tiny little trial is either going to have a massive drop-out rate for long-term follow-up (if participants are told that their data can't stay in it if they go on to take cross-sex hormones) or it's going to find itself in a position where it has to recognise that there is no way to isolate the impact of 2 years of PBs from cross-sex hormone use. The latter position seems remarkably similar to the data linkage study..... which has 9000 records instead of 226. Not all 9000 had PBs but thankfully, as poor as the records are, we do know how many did - and crucially who did (hence the change in law re GRCs and anonymity specifically for this study). I can't remember the exact figure but I think it was around 2,300 who had PBs. Hannah Barnes wrote about it.

What's missing in the data linkage study is a record of a) bone density, brain maturity and mental health at the start of treatment, regardless of whether that treatment included PBs, and b) a front row seat on watching the impact on bones and the brain during the PB treatment period. But given it's 9000 people, that really doesn't matter. They can simply compare both bone density and brain development to the general population. Likewise with mental health outcomes.

There is no justification for this trial to go ahead. We don't need 226 more children harmed just to get the real-time data experience. There's plenty of data out there already.