I find it amusing my disability may come from a 'retro' virus (and transgender)

Amusing because I always have loved old styles of sci-fi, art and fashion.

http://sacfs.asn.au/news/2009/10/10_11_xmrv_retrovirus.htm

Now of course its still early days. There's been other biological factors found for this illness still considered by many even in the medical profession as purely psychological.. yeah they can tell that to the blood tests where i was eating for three and my body still thought it was so starved that canabilising my muscles and bones seemed a good idea to it.

It's a big puzzle and with many complicated aspects, what is thought in one discovery to be causal may instead be consequential and vice versa. And it may well be the umbrella term covers more than one illness related causally or unrelated but for similarity of symptoms.

Seem familiar?

There are quite a few similarities between that and much in the Transgender world.

Of course even with the name conflicts between Chronic Fatigue Syndrome, Fibromyalgia and Myalgic Encephalomyelitus and whether or not fibromyalgia is a seperate similar maybe related illness or merely just the side of CFS that gets more muscle and joint pain compared to the exhaustion and cognitiove imapirment on the other with a false-divide with lots of people having a chunk from each camp and being difficult to shove into either box there has still not been in my experience any of the vicious vitriol and ad hominems amongst sufferers in these debates.

Unlike the TS anti-TG extremists who in the comments at Bilerico recently went on and on in attacks, but again fell silent when those with an ounce of scientific literacy challenged them and called their pseudo-science and cherry-picked science bluffs. (when oh when will they respond to the discoveries of cross-sexed brain neurology of gays and lesbians and the inclusion of non-ops in some of those studies they tout as proving their claims?)

There's lots of pseudo-science around CFS too.. people get desperate so some of those without conscience will try and fleece sufferers. Other sufferers try all sorts of things and if they are lucky enough to go into remission will celebrate whatever they were taking or doing at the time.. alas all too often theres no evidence it actually will help anyone else. Heck years ago one teenage girl was so desperate she trepaned herself.. drilled a hole into her own skull with a powerdrill to expose her brain!

For those used mostly to my posts being directly related to transgender issues its worth looking at the experience of people with CFS. I'm lucky that I can string written sentences together with a reasonable enough degree of coherancy that the cognitive impairment problems don't so often show.

http://www.youtube.com/watch?v=TMh_JpPmL-s

And with CFS ignorance and bias amongst the medical fraternity ignoring the evidence, ignoring the science also kills

http://www.youtube.com/watch?v=0Y_T5ylWUv4

And of course there are lots of ways that society punishes the disabled.. centrelink is a minefield of ablist beaureucratic traps seemingly designed for no other purpose than to make disabled peoples lives more difficult or to find excuses to cut their pensions.

So there is good news.. but only another piece of the puzzle at the moment, no new treatments are available and there is only a chance this discovery will lead to some.

And its a good opportunity to think about the issue, and for those without disability to think about those around them whose quality of life and their very continued existence depends on society fulfilling the social contract and looking after them.. which all to often it's failing to do.

On CFS, Psychiatry, TG and idiocy in medicine

I link to two great articles whether you have CFS, know someone who has or have no idea about it.

Read this.

Some days, when my natural instincts slip past my stict internal ethics-filters, i consider how just it might be to get all the people who make ignorant assumptions about CFS and jam them in a room filled with mosquitos carrying Ross River Fever or some other illness with similar symptoms to CFS so they get a taste of it, oh and use some drug to mess with their memory so they have no idea whats wrong with them when they start to feel ill.

That or just take a big hammer with the studies showing biological factors in CFS wrapped around the hammerhead and smack them right in the knee with it to remind them of the damned data!

Thankfully for all these I am both too tired and too ethical for such behaviours.

But lets check another shall we? Try this It took something like 5 years before I was diagnosed. During which time I had to leave school, tried to get work, tried to do several forms of further education all of which made me deteriorate to the point of having to quit and overall dramatically worsened my condition with all the antibiotics and antidepressants, (the latter i was not informed were antidepressants I might add, the doctor led me to believe it was a different antibiotic for the 'unknown virus' he said was the likely cause of my illness after the courses of anitbiotics had no effect... only when i webt for a second opinion did i learn what i'd been placed on!) let alone the fact that no matter how sick i felt I still kept up a moderate level of activity (I get bored too easilly to be happy being bedbound thank you very much you *censored*) till after trying several different doctors one said:

I'd say you had chronic fatigue syndrome.. If i believed it
existed

Amusing no? So when I tried another doctor i mentioned this quote. He was astonished. A bunch more tests later to rule out more possibilities he said i clearly had CFS and there i was, finally diagnosed. Now if this moron discussed in the second article is correct then what the heck illness did i have for years and still have long before I had internet access or had heard anything about CFS beyond vague jokes about Yuppie Flu?

Back from my experiences to the excellent article:

Why can they not see this? Because they don’t want to admit that they don’t know
everything, perhaps? I think that’s a component, but there’s more to
it.
Here’s my current take: These psychologisers are believed, because they
are the people who are reinforcing existing prejudice. I think that popular
conceptions of CFS are heavily gendered: If a disease is suffered more often by
women, we all know they’re doing it to themselves, don’t we? And if people -
especially women - have diseases we don’t understand, they must be to blame
somehow. We’re not very comfortable with uncertainty, we don’t like “shit
happens” as an explanation.
We seek to blame, and who better to blame that
the people who we see at the centre of the problem - women with disabilities?
The shadows of victim-blaming rear their ugly heads again and again and again
within every axis of oppression, and those shadows are multiplied at the
intersections**.
And so, people with disabilities are abused - medically,
socially, financially, and psychologically. Every day. Because of people like
Wessely who are “just trying to help”.

Well my oh my does this seem familiar to me. Just like the Zucker and Blanchard nonsense. Just like constantly calling non-binary folk all 'fetishists'. Despite the data when it fits the prejudice it must be true.

I should point out though that for several years after my diagnosis I was still trying to get work and study. I asked three times and DSS/Centrelink about the disability pension and was told each time that CFS was not covered. Then I met a local woman who also had CFS (and a much much milder case than mine) who had been on the pension for years! I mentioned this to my doctor and he had several other patients with CFS on the disability pension, all women, and he helped straighten things out so I finally got my pension.

So in this case was it an assumption that as a 'strong' male i could just ignore the illness and keep going while 'frail' women could not? Or was it that womens contributions were considered negligible and could be pensioned off while I as a male needed to keep being a productive worker?

I'd appreciate others theories on that. Either way back then I heard of quite a few cases locally at least where males with CFS had much more trouble obtaining the disability pension than females.

At any rate there are patterns here. Patterns of sexism, ablism and more. At each turn there is a lack of Ethics, a lack of conclusions based on thorough data. Just prejudice used to draw faulty conclusions from the outset and construct bad studies to support them.

First Meanderings of 2009

Well I'm back from visiting family, alas my symptoms are flaring and using my brain feels like swimming through treacle.

It literally feels like that, like pushing against and through resisting dense material.

So I hope you'll forgive the more likely scattered nature of my post.

On the personal level it's been a bit draining. It was good to see family members I'd not seen face-to-face in a year. We had some good times, we spent much of it wrapped in nostalgia watching dvds of cartoons enjoyed when kids and catching the black-and-white Quatermass which we'd not been able to see before and of course with a fair amount of shopping.

But it was also painful at times because of difficulties Mum was having with aspects of coming to terms with my being Transgender. At least she is trying, she is being supportive. I know transexuals who suffered horribly at the hands of their parents and suffered more because they never gained any acceptance or support from them their whole lives. I'm one of the very lucky ones indeed!

But being lucky doesn't make it easy. It doesn't make logical points made from lack-of-knowledge (I say that rather than ignorance because plenty of people I know consider it an offensive term to use. When did ignorance become a dirty word? Willfull ignorance is shamefull but appropriate to point out when that is what the case is, ordinary ignorance is universal amongst humans as none of us are omniscient!) and therefore incorrect any less painfull sometimes to hear.

I think thats a problem with many who comment on TG issues and many other issues. They may be making what appear to be logical deductions or raising logical issues but if it comes from limited knowledge or for that matter from stereotypes, assumptions or un unrealised bias then it often becomes unintentionally hurtful or in the case of many media opinion-spouters outright harmful. At least with many, like my Mum, they can be given data, analyse it, weigh it on its methodology and reconsider their opinions.

Alas many seem incapable of it. What is wrong with them? Are they sleepwalking through life to a degree that I even when my CFS Brain Fog is so severe I cannot contemplate basic arithmatic without severe pain and confusion yet cannot remotely imagine let alone sympathise with? Can they have their higher brain functions so suborned to their emotive functions that the capacity for rational thought is used only barely enough to try and rationalise whatever irrational illogical and I dare say utterly insane notions they have already espoused? Or can it be a deliberate and knowing lie used to try and save face by ignoring it when they discover they are wrong?

Like the Popes recent statement. Can he himself be bisexual and so incapable of imagining that there may be non-bisexual people that he thinks that the fair treatment of gay and transgender people will result in no-one procreating anymore? Could he be so utterly stupid? Or is it a deliberate attempt to save face by refusing to recognise that science once again is disputing part of their theology? Are gender-theorists and neurologists the new astronomers? The new geologists?

And I hear of more Transgender deaths. Some by murder and one because of the discrimination involved in sheltering someone based on birth anatomy. Religious or not charities and support services have a duty-of-care and if that means they have to change their systems to accomodate transgender people then thats what they are obliged to do. The hetero/cis-normative assumption used in these systemic injustices falls apart in the light of the existence of transexuals, of intersex, of women who rape women children and men. Only via ignorance or worse willful ignorance can suvh notions be maintained.

And it's not just the Salvation Army and the frozen woman on the church doorstep that this applies to. Tri-Ess also bears substantial scrutiny for the way they treat male-attracted crossdressers and those who when they come to terms with themselves need to transition. To turn people in need away is abhorant. Seemingly, from discussions on crosdresser forums, it is done to ensure that the wives of female-attracted crossdressers won't have their fears that their skirt-wearing husbands might be gay or transexual triggered by their presence. How abominable is that! It's manipulative of the wives, it abandons the needs of those wives too whose husbands do turn out to be bisexual etc or transexual.

Complaining about 'activists' and drag queens and transexuals etc for stirring things up, for the lack of acceptance they experience especially from their partners and arguing for their exclusion for selfish personal benefit.

The idiotic and nonsensical divisions amongst sections of the sex and gender diverse communities are built on such pathetic pretense at reasoning! And I note that I'd heard most of the arguments before... from the more hostile and irrational ravings of some amongst the HBS advocates.

People pushing those divisions cause real harm. People pushing stereotypes that dismiss the diversity of humanity do real harm. If we do not work together, if we dismiss the more different because they dont fit the average or the standard or the image one wishes to portray then we cause real harm.

Now all that said I'm far from without hope. There is much that can be done to build bridges between communities so they can work together on shared and related issues. There are many people who just need to be inspired, or who wish they could help but don't know how they can do so.

As for Mum. Well while she still is working through this (heck so am I too) she took me shopping for clothes, and after we watched To Wong Foo (I'd picked it up when shopping having not seen it and we'd had our fill of 80's cartoons and finished Quatermass) the hug she gave me was painfully wonderful. That's something that many TG people I've met never got. A hug from their Mum after coming out.

We need to work together, HBS TS CD DQ DK GQ IS etc etc so that more people get hugs from their Mums, so that less freeze to death on church doorsteps, so that everyone is treated as equal.