Thorns

Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back

From all accounts the effects of the PACE trial were most horrific in the UK, but the idea that my fatigue is all in my head and is best treated with exercise has come up repeatedly for me, too. Ironically it's actually made me exercise less: I'm not willing to try exercising without the help of a medical professional I trust to say if I'm pushing too hard, and I've yet to meet any. They all set the baseline for "mild exercise" at a level I know would make me sicker, and have seen other people with cfs harmed by listening to this kind of advice.

I'm also really glad none of the psychologists or psychiatrists I've seen subscribed to the "tell patient to ignore their understanding of their own health" approach to CBT. Blech.

The "you don't have exercise intolerance you're just neurotic about exercise and need to believe in yourself" attitude is so appealing to able bodied people, and can seduce people wth cfs, too. For a while. Back when cfids_me was more active we'd always have people touting the Lightning Process.

Female sexual dysfunction discussion bingo, all the things that come up reliably in any discussion of the subject.

I've been meaning to post a link to Feminist with Sexual Disfunction for ages, even if you don't have sexual disfunction they're just a really good general feminist/sexuality etc blog and have a unique POV.

One of the reasons I've been putting it off is that I feel that, as part of trying to reduce the stigma around sexual disfunction, I should mention that I have had issues with that sort of thing myself, though at this point it's only around the middle of the list my many irritating incurable poorly diagnosed health problems that make life less fun. Not something I feel like talking about at all but there you are.

I find it interesting if rather depressing how the "It's all big Pharma making healthy women think they're broken" attitude contrasts with the "Clearly if you don't feel like having sex you must have some medical condition" crap pushed on asexual people. In both cases the experiences and opinions of actual people count for nothing in the face of The Way Things Are Supposed To Work.

(Also, I hope it goes without saying but: Please do not say any of the things in those bingo squares here)

I've seen like a bazillion links to the recent discovery that CFS/ME may be linked to a retrovirus called XMRV. But livewareissue linked me a particularly good one: A Case of Chronic Denial

If nothing else it highlights the terrible way CFS/ME has been ignored/belittled by the medical establishment.

I'm really not sure how I feel about this discovery. I mean for a start it's early days and correlation is not causation etc (especially since cfs tends to be correlated with all sorts of virii) But if it is true that CFS is to XMRV as AIDS is to HIV well..on the one hand, possible avenue for cure/treatment, yay. On the other hand..being contagious and having a virus mostly known for causing cancer, less yay.

Overall my reaction is as to most suggestions/revelations about CFS, eg putting it aside to think about it for a while and not get too excited. Because I just don't have the energy.

These are all awfully late but I kept forgetting.

So, today foc_u wants:
anyone who identifies as a POC/non-white to post this banner, their speculative short stories, artwork, poetry or simply write a post on their favorite fandom on their blogs as an act of protest to show we will not be silent or invisible.

(nb there have been issues raised about the mod and whether or not that stops you is up to you)

It's International Day Against Homophobia and Transphobia

Oh and I forgot International ME/CFS awareness day entirely. I was too sleepy :/

And some less time time dependent stuff:
sea_sff: Southeast Asian sff fans!

wild unicorn herd check in If you identify as a POC/nonwhite person and you read or watch scifi or fantasy, give yourself a name check in this thread.

Since that fact that non-white/POC fans exist seems impossible for some people to fathom. (This is a follow on from some amazingly stupid comments by Lois McMaster Bujold but it's a problem which goes beyond her)

Yesterday, watching Xena I was inspired to draw this picture of two princesses. Yeah, totally self indulgent, live with it :)

I was also inspired to make this attempt to capture the weird visual distortions I was getting at a work party yesterday morning, normally it would lead to a migraine but for some reason it didn't. (Huzzah!) Picture by QuintanaRoo via Flickr, and as per her CC rules it is open to remixing/reuse with attribution itself.

I should point out that the work function spread was not anywhere near so healthy or vegan :)

I decided I was spamming twitter too much, so will put my rambles in one place, all the easier to scroll past :)

This is my second cold since my cfs got Super Bad. The first one was during femmconne, and quickly became Very Nasty and left me with bronchitis and a hacking cough that didn't so much go away as exponentially decay. This one SEEMED pretty minor but has kicked back in this morning with congestion and is making my "You will be sick for a while" warning go off (one advantage of being constantly sick for my whole life is well worn instincts about these things) On the plus side? Femmconne was last October. I used to get colds about once a month. You'd expect my immune system to be more susceptible to virii when I'm chronically ill but apparently not. *wonders if this has anything to do with cutting out dairy, since that gives me cold like symptoms*

I've been reading Pride and Prejudice fanfic. I realise that if I want genuinely feminist plots I should avoid stuff set in sexist times but it still annoys me that modern writers of regency romance are almost all more rigidly heteronormative etc than Jane Austen/Charlotte Bronte etc. (Admittedly they still do better than the average writer of that era, I say having been introduced to the plot of Pamela) People, Elizabeth Bennet was not a saucy minx. I am SO sick of the "Heroine misunderstands hero, is feisty but wrongheaded, he forgives her and she realises she should have just trusted him and done what he said all along" storyline. I prefer "Jane Eyre"s plot of "Heroine misunderstands hero and is feisty but wrongheaded, then finds out what is really going on and is justifiably pissed, and goes off to make her fortune before coming back the more powerful partner." I'd steal it for my own fanfic but do not have the heart to burn down Rosings :) *steals bits of it regardless*

So since I realise I didn't say so explicitly: I'm back at work Tuesdays and Thursdays for 4 hours a day.

On the one hand this is great, on the other it's taking me a while to adjust (I am optimistically seeing it that way, if I keep feeling this crap, well..) and so far tend to feel like Utter Crap between Tuesday afternoon and mid-Friday. The weather Is Not Helping.

I've been Disclaimer 4bing all over the internet recently, it's quite embarrassing. *tries to keep a tighter reign on my need to talk to Everyone about Everything*

And now to make dinner!

I need a cfs icon. I have huge icon-envy of lauredhel's slug.

About a year ago I decided to investigate alternative menstrual products, partly out of eco-sensiblity but mainly because they sounded really useful.
( Cut for those afraid of blood )

I'd be tempted to wake him up, but then don't think he'd be any mood to fix the email server :)

Blarg. I feel sick, and not in a cfs way(*), I think something I ate at lunch disagreed with me.

(*)Although as always that's piping up too as a result of me feeling run-down