Are you passionate about finding a cure for brain tumours? Didn't think that this 'niche FWR ' trans debate had anything to do with you?

[pombear]

Feel free to read the lovely Dr Fond's twitter thread about this:

twitter.com/FondOfBeetles/status/1080940856587239425

No time to read a short twitter thread?

Maybe it's not your 'thing' engaging in FWR 'cos we're all 'T *RFS' and hateful and all that?

But maybe the brain tumour thing caught your eye?

Curious? Did the post title resonate with someone you know, relative, friend, etc with a brain tumour? But what's this got to do with FWR?

Just know this.

Science and medicine evidence demonstrate time after time that there are biological differences in humans, which can give us clues and help to treat conditions in a more targeted way, which includes brain tumours (as well as heart disease symptoms, etc etc)

Some people (trans rights activists - you'll see it abbreviated as TRAs on this part of the website) are SO passionate about denying biological reality that they want to a) pretend any biological differences are '"just social constructs" b) validate themselves so much (and usually, that's males wanting to validate themselves into the 'female' category of healthcare, be it blood donation or clinical research' that they're happy to transgress the biological categories, 'identify' into the 'other' regardless of what that might mean for healthcare research and treatments.

And therefore, as a result, their actions will skew research results, simply for their own validation.

(NB: I know I'm posting this on FWR, therefore most of those I'm talking to know this already!. Just so frustrated and sad that identity politics are potentially threatening health, research, and people's lives - cue a trans right activist perspective telling me that invalidating people's choice to identify as the other sex is threatening lives too)

This reminded me of something important that I hadn't thought about for a long time: it's been known for at least 40 years that cystic fibrosis, a genetic disease that many people of northern European descent carry mutations for, presents quite differently in males & females. Generally speaking, CF makes female children sicker than male children & more prone to particular pathogens that can prove fatal. Females with CF are more likely to than males to die of CF in childhood or their teens, & amongst those who live past 20, females on average die four years earlier than males. This has been well-known & documented by clinicians treating people with CF going back to the 1960s, & by researchers in peer-reviewed scientific literature in recent years. For example:

compared with male subjects with cystic fibrosis, female subjects with cystic fibrosis have increased morbidity... and poor lung function relative to male subjects...

From another paper:

It has been known for some time that females with cystic fibrosis generally have a significantly higher mortality than males from age 1 to 20 years, a sex difference that remains despite radical improvement in survival rates through the years.

More recently, two independent studies in Diabetes Care showed that female subjects with cystic fibrosis–related diabetes have a worse prognosis than male subjects.

Scientists asking, Are these differences a result of evolutionary, sex-specific selective pressures? have proposed that there's an evolutionary explanation for the observed sex differences in cystic fibrosis.

An analysis of nearly 33,000 people with CF in the US documenting sex-linked differences in how CF affects males & females was published in 2014 in The Journal of Women's Health. But unfortunately it was titled "Gender Differences in Outcomes of Patients with Cystic Fibrosis" & the word "gender" was used throughout instead of the correct word, "sex":

Conclusions: CF women continue to have a shortened life expectancy relative to men despite accounting for key CF-related comorbidities. Women also become colonized with certain common CF pathogens earlier than men and show a decreased life expectancy in the setting of respiratory infections. Explanations for this gender disparity are only beginning to be unraveled and further investigation into mechanisms is needed to help develop therapies that may narrow this gender gap.

care.diabetesjournals.org/content/28/7/1581?

care.diabetesjournals.org/content/29/1/179

www.ncbi.nlm.nih.gov/pmc/articles/PMC4442553/

OP, please consider asking MNHQ to rename this very important thread you started so others can more easily see what it's about & will contribute to it. Something along the lines of Sex-differences in how diseases affect males & females are real & need more research. That's clumsily-worded, but you get the gist I'm sure.

Veg
Indeed,the implications of skewed medical research findings hadn't yet occurred to me ,its a huge worry

EJennings, what a coincidence that we meet again on an entirely different thread !

Interestingly, it's been frequently theorized but not yet proven that people with COPD carry (known or unknown) CF mutations that predispose them to getting COPD. (Same goes for asthma & disseminated bronchiectasis.) This would account for the sex differences seen in people with COPD.

CF is a very rare disease even amongst the population it most affects (Caucasians of northern European heritage). Today, only 70,000 people worldwide have CF. As a result, it might seem that findings about CF aren't relevant to most people. But over the past few decades, more than 1,700 mutations of the "CF gene" (actually the CFTR gene) have been discovered, meaning many more people than previously thought are probably carriers of - & affected by - one or several of these mutations.

While not all of these mutations are causative of CF, it's clear that carrying single copies of one or several CF mutations is correlated with negative health consequences. People with chronic or frequent sinusitis & bronchitis often turn out to carry CF mutations, as do people who get frequent "colds" & take an extra-long time to get over them.

It seems plausible that CF mutations underlie or are involved in a number of medical conditions affecting respiratory, hormonal & digestive functions. And because CF mutations manifest in ways that are definitely sex-linked, it's very likely that many diseases & conditions related to CF mutations have a sex-linked genetic basis - & thus might require treatment that differs based on the patient's sex.

This underscores how important it is for medical researchers to know the sex (not gender) of the people they study, & to view their findings through the lens of biological sex (not gender). It also shows that only a shitheel who gives no effs about other people & the human race in general would sign up for a medical study claiming to be the biological sex opposite to the one they actually are.

There's a ton of research on this. I've just picked a few papers at random:

www.atsjournals.org/doi/pdf/10.1513/AnnalsATS.201509-588KV

respiratory-research.biomedcentral.com/articles/10.1186/1465-9921-15-18

www.liebertpub.com/doi/abs/10.1089/gte.2007.0069

Science experts: yes I know that CF mutations are recessive, & a person has to have two copies of the same mutation, one from mum & one from dad, to have CF. But this seemed a tad too complicated to go into here. And it's beside the point, because what I'm talking about here are the health consequences of having single copies of one or more CF mutation.

EJ, great news about your friend. Is the drug he's on the New CFTR Modulator Treatment for Cystic Fibrosis Tezacaftor/ivacaftor (Symdeko™)?

That drug was approved by the US FDA in early 2018 for individuals with two copies of the most common cystic fibrosis mutation, F508delta, as well as for individuals who have a single copy of one of 26 other specified mutations.

I happen to be a carrier of the F508delta mutation as well as several others & I have health conditions that seem to be caused by/related to those mutations. But the only reason I knew to get tested (& USA insurance covered the costs) in the first place is that I'm from a CF family & lost a brother & sister to the disease. There are many people with family histories of "silent" CF mutations whose health might well be affected by these mutations, but they have no idea they have or could possibly have them.

But enuf about me. The point is, some/many diseases that affect males & females in equal numbers still appear to be sex-linked in how they manifest & need to be treated.

Medical/scientific research that discounts or minimizes biological sex is a huge step backwards. Medical/scientific research that totally disregards & denies biological sex is a crime against humanity.

As a HCP who spent years running clinical trials I worry about this too. The potential damage to future generations is really shocking.
It is going to be impossible to even write a protocol.
How are ethics committees going to be set up or function?
Lab results will be useless.
The more I think about it the more I think any kind of meaningful research won't be possible.

Many disorders of immune function known since the 1980s as "primary immunodeficiencies" (PI) or "primary immune deficiency" (PID) also appear to be sex-linked.

It used to be thought that these rare diseases were so unusual & deadly that no one with one of them survived childhood. And the focus of clinicians & researchers starting from the discovery of primary immunodeficiencies until now was almost exclusively on male children with them. (Remember "bubble boy disease"? Also, check out the Jeffrey Modell foundation.)

Today, however, immune system disorders known as primary immune deficiency, many of them apparently sex-linked, are frequently being diagnosed in middle-aged women! In fact, it seems middle-aged women are the largest group now being found to have PI/PID.

Many disorders of immune function known since the 1980s as "primary immunodeficiencies" or "primary immune deficiency" also appear to be sex-linked. It used to be thought that these rare diseases were so unusual & deadly that no one with one of them survived childhood. And the focus of clinicians & researchers starting from the discovery of primary immunodeficiencies until now was almost exclusively on male children with them. (Remember "bubble boy disease"? Also, check out the Jeffrey Modell foundation.)

Today, however, immune system disorders, many of them apparently sex-linked, are most commonly diagnosed in middle-aged women!

Oops, sorry for the duplicate posts. I thought I was previewing & editing, but must've posted prematurely.

relevent threads:

www.mumsnet.com/Talk/womens_rights/3249928-Gender-Critical-Science

www.mumsnet.com/Talk/womens_rights/3196135-Scientists-please-gather-round

www.mumsnet.com/Talk/womens_rights/3273672-I-am-a-science-teacher-teaching-secondary-sex-education-and-genetics

great article.
I’m very concerned that clinical trials could be impacted - even a few people mis identified could sink a trial.

Bowlofbabelfish
I had a memory of an important thread last year where you and other scientists examined the various consequences of denying sex as a key indicator.
I found the three threads above, just wondered if I've missed one that you might be aware of.

Isn’t haemophilia the classic example of a disease that presents differently in men and women because of X and Y chromosomes?

A very pertinent post and moving twitter feed.
If Sarah Brown really said they'd claim to be female in a medical trial, they ought to be ashamed of themselves. Sex matters. Get over it

@merrymouse males and females with haemophilia present in much the same way, it's just that it is incredibly rare for women to have it. Vanishingly rare, actually. Because it's carried on the X chromosome, and as women have two of those, the non-haemophilia carrying chromosome dominates.

Males only have one X, so if it's affected, they're affected.

But you know, what do small things like chromosomal make up really matter?

Beyond the Binary:
UK description of blood donation which allows donors to declare their 'preferred gender' rather than biological sex.

There are still I understand specific rules with regards 'gay men' which are, I presume, due to the additional risks associated with male homosexual sex.

If a male person's preferred gender is female and they regard sex with other males as heterosexua sex they will not identify as a 'gay man'. As the article explains, there are sex-specific measures and protocols.
beyondthebinary.co.uk/giving-blood-as-a-non-binary-transgender-person/

Independent 2017
www.independent.co.uk/news/uk/home-news/gay-men-donate-blood-rules-three-months-after-having-sex-12-government-policy-freedomtodonate-a7854811.html

There was discussion about this with regards a complaint by a transgender person North America last year.
www.mumsnet.com/Talk/womens_rights/3372218-Identifying-as-female-to-sell-blood

If Sarah Brown really said they'd claim to be female in a medical trial, they ought to be ashamed of themselves.

They're not going to be ashamed of themselves. Many of these people clearly have personality disorders. There need to be systems put in place to deal with this.

www.haemophilia.org.au/about-bleeding-disorders/faqs/women/can-females-have-haemophilia

According to this women can still have mild symptoms if they have a one X chromosome, (e.g. they might have very heavy periods), but as you say lrh3891, the other chromosome compensates.

R0wantrees, your mention of blood donation & the relevant health risks of gay male sex reminds me: Recently there were a flurry of press articles about a study from the Human Rights Campaign about the difficulties transwomen with HIV in south Florida have accessing appropriate health care. The HRC report & articles about it say south Florida transwomen have high rates of HIV (which the HRC attributes to their oppression by a transphobic society rather than risky sexual practices), but are cagey about exactly how high. So I looked into the topic, & found that the US Center for Disease Control (CDC) says that globally transwomen contract HIV at 49 times the rate the rest of the population does, & in the US in particular today

around a quarter (22-28%) of transgender women are living with HIV, and more than half (an estimated 56%) of black/African American transgender women are living with HIV.

Looking at the studies these shocking stats came from, I found the high rates of HIV prevalence are based on verified lab tests for HIV rather than self-reporting. (Relying on self-reports from transgender women alone would give the impression that 11% of US transwomen have HIV.)

But despite this "epidemic" of HIV amongst transwomen in the US, & the fact that it's apparently "common knowledge" amongst the population affected & their advocates, most transwomen in the US have never gotten tested for HIV:

Nearly two thirds of transgender women and men surveyed by the Behavioral Risk Factor Surveillance System (BRFSS) in 2014 and 2015 from 28 jurisdictions reported never testing for HIV.

Obviously, these stats have major implications for the wellbeing of transgender women, those they have sex & share needles with, & society as a whole. Yet for all the constant talk about how vulnerable transwomen are & how minor slights like misgendering them are "literally killing" them, this is the one "vulnerability" we never hear about. Wonder why...

www.cdc.gov/hiv/group/gender/transgender/index.html

www.ncbi.nlm.nih.gov/pmc/articles/PMC5947322/

I tried to find out about HIV rates amongst transwomen in the UK, but found only one paper from the BMJ that I couldn't read in full without paying. However, the last sentence of the text visible online says:

It is not possible to determine accurately the HIV prevalence among trans women and men in the UK because there are currently no census data on the overall number of persons who identify... (ellipsis theirs not mine).

BTW, the BMJ article starts with a quote from Laverne Cox: What message are we sending to young people who are trans or gender nonconforming when we don’t even count them? We suggest their identities don’t even matter.

But how can transgender people be counted & accurate health stats about them gathered when the definition of trans has become so wide, & when so many people are in denial about their biological sex or willfully choosing to lie about it?

sti.bmj.com/content/94/5/318

Surely doctors / scientists / researchers are not going to just accept their work being sabotaged in this way?
If people on Mumsnet can see it, they must be able to and must have ways to raise the alarm about it.

@Vegilante re rates of HIV amongst transgender people in the UK, there is info out there from credible sources, though fairly much confirming what you have found already.

If you want to read further - start with this one www.nat.org.uk/sites/default/files/publications/NAT%20Trans%20Evidence%20Review%20V3%20Digital.pdf - a reliable source, report done April 2017. Not sure if a more recent report has been produced, however there are links to other reports such as Lancet and aidsmap - also good for HIV stuff.

You could of course contact these organisations and ask them if you have concerns!