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?

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

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

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!

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.

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.

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.

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.

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

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

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.