Just a question re transgender

Yes, I had misunderstood

I think your post has been misinterpreted by several posters on this thread.

That’s not good at all. What services were these?

Charlize43, yes indeed, Satanism! When a Presbyterian minister's academic hood is assumed by a monomaniacal (and ill-informed) social worker to be Satanic ritual garb, a badly-made balsa aeroplane is a crooked cross, and Neptune from Holst's Planets Suite is ritual Satanic music. I'm not sure how the videotape of an episode of Blackadder was thought to be Satanic, nor the detective book by Ngaio Marsh, but you can find evidence of Satanism anywhere if you have the right bee in your bonnet.

Speaking of fads, Liz Taylor should never have worn hot pants!

But I think it might be that the reason we didn't have so many alphabet diseases in the seventies wasn't that the diseases themselves didn't exist, it was that they were spoken of by name rather than a bunch of initials. MS was Multiple Sclerosis, for instance.

It's not so strange that a lot of similar people are attracted to SC-FI or fantasy Op, both areas attract a lot of fan fiction by people who'd really like a different life and/or secret powers that would make them different but in a good way.

The behaviours of the illness faking and "sickfluencer" demographic have had direct, huge negative impact on my own healthcare so you'll have to forgive me for seeming annoyed by them. It doesn't mean I have any animus against anyone with these diagnoses who is on this thread. I find it highly unlikely that people who are faking are on Mumsnet, for the most part.

I'm not going to instruct people on how to fake a test result. It's commonly understood among the groups of people who discuss factitious illness and malingering online that you don't disclose the exact details of how to falsify or distort tests. But POTS is one of the easiest diagnoses to fake, which is partly why, unfortunately, it is so disregarded by medics.

I'm not sure why your responses are so hostile. I am myself hugely negatively affected by people malingering and/or faking illness, so of course it's frustrating for me, but I'm not accusing you personally in any way at all. As I said, the Mumsnet demographic is unlikely to do this. I have very longstanding diagnoses of some of these conditions myself so you are wasting your time lecturing me about them. I'm very far from minimising; I'm saying that the faking and malingering of real illnesses affects those who do genuinely have them.

How do you fake a POTs test please tell?!
I was hooked up to a heart monitor, a BP monitor and was monitored through out. Not sure how someone can get their resting heart rate to exceed 120 bpm just by wanting to fake a test!

You can fake passing out but your BP would give you away

@verysmellyjelly you stated the following "may mean that a lot of people diagnosed with them don't necessarily have "true and honest" diagnoses (accurate, thoroughly validated and confirmed, not self diagnosed or "cheated" on a clinical test, not bought from a corrupt private doctor)."

Would love to know how someone fakes a POTs test....its very specific and mostly involves either a tilt test or test monitoring blood pressure and heart rate over a period of time.
There is no long covid test developed currently same with fibromyalgia it is diagnosed via ruling out other conditions and multiple clinicians. My blood work has always come back "clear" with the exception of low vit D and B12 levels also common in long covid suffers despite taking both as supplements.

Buying a diagnosis in the UK?! the private immune consultants in the UK have very long wait lists and are very respected in their fields.

Yes there are people who self diagnose without proper medical input but thats not limited to autoimmune conditions. I had a friend who would tell me her headaches were migraines....as a migraine suffer since a child (and yes medically diagnosed by neurologists as I was young for them to start so they originally thought I had something else) could tell no it was just a headache and surprisingly when she had a actual migraine she thought she was having a stroke!

The ME community spent years fighting this sort of language that it was a mental health condition etc.
As I said the language you use minimises people's actual conditions.

@Scottishskifun Actually it is entirely possible to fake a POTS test, and people talk about how to game their result in chronic illness groups!

Casing point no these illnesses are not made up just because you hadn't heard of auto-immune conditions doesn't mean they haven't existed for a long time with the exception of long covid as that's been around since covid funny enough and one of the reasons it was accepted was due to the high prevalence.

Fibromyalgia first described in the 19th century, ME 1940s, POTs first recorded in medical literature 1873 etc. MCAS is more understood from 2010 but mast cells were discovered in the 19th century.

What has increased is prevalence of number of people with the conditions especially linked to covid infection. Approx 60% of long covid sufferers also have been diagnosed with POTS it is not possible to fake a POTS test it's based on very specific criteria, blood pressure and heart rate hence tachycardia in the T.....

They are becoming more heard of because levels of sufferers is increasing.

Many of the patients being negatively affected, like me, have long term conditions dating back many, many years (long before Covid), and these conditions predate the social media phenomenon, predate "sickfluencing", and predate the current issue of the very same conditions becoming fashionable. So we can directly compare our experiences of care now vs care in the past.

Where did I suggest you personally were self diagnosed? @Scottishskifun If you look at my comment, I didn't say anything at all about you because obviously I don't know anything about your own situation. I wouldn't jump to assuming someone on here was in the category I'm describing as demographically speaking, that is actually quite unlikely! But it doesn't mean that demographic doesn't exist. I'm sorry you've taken personal offence but this demographic is a real thing and the phenomenon being discussed is affecting genuine patients. If that's you, then your care is likely also being affected even if you're not aware that it is.

Placemarking until I can come back, because it's so interesting!

You have described my daughter and her group of friends.

I'm a firm believer ASD and gender confusion are a team.

There are many teenagers who you have described in my daughters SN school, in comparison to my nieces and friends children who attend busy mainstream schools.

My personal belief is, DD has always felt out of place, a misfit, she is not trans, she went through the pronoun phase, thankfully it passed.

I've been involved with patient feedback services, regular face to face support groups for long covid, long covid charity work as well as multiple different areas.

While different labels maybe attractive to personality types the assumption that conditions are just gained like a badge of honour is absolute nonsense and no I am not self diagnosed I have spent years going through tests, and formally diagnosed as I also had a positive covid test.

People with long term health conditions which are vastly under researched and vastly misunderstood have a tough enough time of it without a "discussion point" from a bloody Sci fi group observation! It makes a complete mockery of very real people with very real conditions by saying oh yes they all seem to have it. It makes those of us living these god damn awful conditions daily seem like we have somehow gone you know what I fancy this week.....constant fatigue, headaches, eye pain and the inability to care fully for my children solo. It's insulting.

I can't help wondering where all this has come from? I'm 58 and I don't recall us having all these alphabet diseases when I was growing up (apart from VD)...

Anyone who grew up in the late 80s will remember the huge trend of people claiming to be sexually abused as children by Satanists, which is practically unheard of these days. Any oldies here, remember that?

Could it just all be a fad, like hot pants? I remember as I child seeing my aunts fat legs squeezed into a pair and I knew it would die a death...

If you are in groups online dealing with medical conditions then I am surprised you haven't seen the phenomenon OP is discussing. She is talking about something absolutely real and observable. I recommend looking for it yourself before criticising her for raising it as a topic of discussion. Identity labels are very appealing to some personality types, and especially to younger people. It doesn't mean these illnesses aren't real, but it may mean that a lot of people diagnosed with them don't necessarily have "true and honest" diagnoses (accurate, thoroughly validated and confirmed, not self diagnosed or "cheated" on a clinical test, not bought from a corrupt private doctor).

It isn't "inevitable" at all that those comorbidities would lead to a diagnosis of hypermobility. Again, this is misinformation based on the common myth that there is a proven, definitive link between all of these conditions. Some of them commonly co occur, such as EDS and POTS, but some of the suggested links (such as EDS and autism) are still based on only weak and low quality evidence. Stronger evidence may well emerge with time, and it will be clinically interesting and helpful if that does happen, but it's misleading to misstate the current level of evidence.

Honestly OP you linking multiple health conditions to then being gender fluid is very odd.
People with long term health conditions struggle enough to get diagnosis. The concept that you can simply have POTS because you wish to is farcical. It's a full on set of tests in some cases a tilt table and monitoring blood pressure.

I am in support groups for chronic/long term health conditions there isn't a large majority who are trans more women yes but that link is quite well known along with women's health parity including research.

I think science is likely to find a lot of connections in the next ten years!

I say this as one of the people with a lot of these conditions. As a baby I was diagnosed with severe chronic eczema and hayfever, has a high co-morbidity rate with other allergic conditions and, in turn, those have a high co-morbidity rate with hypermobility spectrum disorders including hEDS. Autism was first suspected by my family when I was in pre-school, but it wasn't until I fell apart in secondary school due to anxiety and chronic migraine that I was referred to CAMHS and diagnosed with autism and ADHD. It was the ADHD clinic that first picked up dysautonomia, because they test heart rate and blood pressure frequently when starting ADHD meds.

I didn't end up getting diagnosed as hypermobile until adulthood, when one of my knees dislocated thanks to the simple act of standing up. Looking back, considering the list of co-morbidities, it was pretty much inevitable 😂

I know a lot of people with similar health profiles- a combination of neurodevelopmental disorders, autoimmune, allergic, and dysautonomic conditions- we have a tendency to flock together I think! They're not people I found by seeking out similar people but instead met mostly through hobby groups and shared interest spaces. I'm really interested in seeing how studies look further into these connections and whether or not there's a causative connection or simply a correlation; I think it's going to be fascinating as more data comes out.

Birds of a feather...

I have tended all my life to think of SF as "what if" fiction: what if there were this or that thing unlike that which we live with here, as it might be a low gravity environment: how would this alter eg transport methods and needs, or recreation? What if teleportation were a practical means of getting from a booth in Kansas to a booth in Paris? What if time travel worked? (And define time travel: does five minutes into the past count? And would preventing X thing from happening be a good or a bad thing, and how could you tell in advance, or would you have to make small alterations over and over and over?) What if a drug put into the water supply compelled anyone who had drunk it to be honest: what would that do to politics, and indeed to politicians, or to personal relationships?

But on the whole, sod the politics! It's the possibilities that interest me.

I appreciate the desire to switch off sometimes and consume fun media, but I think it's important to bear in mind that sci-fi has always been a very political and philosophical genre! It's not unusual to find these kinds of themes because many, if not the majority- of sci-fi works use speculative settings and advancements to explore political themes. Frankenstein is often cited as the first example of "science fiction" as we know it today, and the book is just as much about the responsibilities of parenthood and ethics of pursuit of knowledge as it is about a scientist creating a monster. Many of the most popular sci-fi stories today are even more political- Star Wars, Dune, and Brave New World all come to mind, as well as children's sci-fi media such as Wall-E.

That's not to say you can't or shouldn't enjoy sci-fi just for the fun of it- I often do! But it makes sense that these stories attract people with an interest in these politics, and that a lot of fan-spaces centre political discussion. For an autistic person with a tendency to hyperfixate, sci-fi fan spaces are a rare example of a community thinking as intensely about something as we naturally seem to do, and where discussion on that level is encouraged. As there appears to be a correlation between ASD and gender dysphoria, it doesn't surprise me that there's a crossover in interest there.

(There's also an element where I think speculative fiction appeals to people trying to escape the pressures of life, the societal pressures of gender and, in relation to your mention of EDS and related conditions, the societal and medical pressures of disability. Sci-fi often includes settings where these pressures are either non-existent or very different to those experienced in real life, so it naturally seems to have become an escapist space for many. I need to think more on that to make a more substantial point, though.)