sqbr: I lay on the couch, suffering an out of spoons error (spoons)
Thursday, September 22nd, 2016 11:24 am
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 [livejournal.com profile] cfids_me was more active we'd always have people touting the Lightning Process.
sqbr: Rose and the doctor (dw?)
Sunday, July 13th, 2014 11:03 pm
Let's see if I can remember what I wanted to say for any of them...

Jennifer Lawrence And The History Of Cool Girls. I had some further thoughts on tumblr (which I'd been pondering turning into a post here but tumblr got to me first) This ffa discussion of what people consider a feminist character touches on related points.

I've been thinking a lot about the moral obligations of adults towards the teenagers we encounter online, especially now I'm on tumblr which is FULL of teenagers. I deliberately seek out friends around my age and still have heaps of teen followers, some of them mutual because we genuinely have stuff in common.
How we were fooled into thinking sexual predators lurk everywhere argues that we need to look out and care for vulnerable teens more than worry about malicious adults (though that's important too) Here's a discussion on ffa of the issues around teens and adults and porn, something I don't have to worry about as much personally since everything I create tends to be at most PG rated anyway but still find disquieting, mostly when I encounter the porn my teen friends are into (I don't object to them being into it I JUST DON'T WANT TO KNOW). But that particular aspect aside I feel like...I have a responsibility to be a NON creepy adult rather than just avoiding younger people, or the only adults teenagers will meet are the creepy ones (and not just sexually creepy, they can take advantage emotionally or monetarily too)

Meditation Nation On the intense emotional upheaval meditiation can cause, and the difference between doing it for personal gain and religious insight.

Curbing Online Abuse Isn’t Impossible. Here’s Where We Start About constructing social networks that encourage good social norms.

The difference between cultural appropriation and cultural exchange

Inspiration Disinformation on the artists vs haters dichotomy.

Why Are Doctors Skeptical & Unhelpful about Chronic Fatigue Syndrome?

Why I no longer engage the “Are aces queer?” question The important thing is respect and inclusion in general, eg if people who didn't see aces as queer didn't THEN divide the world into "straight vs queer" instead of "straight, queer, or asexual" there'd be much less of a problem.

The People vs the Political Class The gap between politics and what the people (of Australia, and in general) actually want.
sqbr: I lay on the couch, suffering an out of spoons error (spoons)
Saturday, October 24th, 2009 09:52 am
I've seen like a bazillion links to the recent discovery that CFS/ME may be linked to a retrovirus called XMRV. But [personal profile] 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.
sqbr: I lay on the couch, suffering an out of spoons error (spoons)
Thursday, October 8th, 2009 08:00 am
People have gotten sick of the feminist site Feministing's ableism, from never talking about disability to letting anyone who calls out ableist comments/posts be dogpiled rather than supported. Here's a Feministing and Disability linkspam, with an open letter to sign as well as a selection of the responses to this at Feministing.

Personally I decided I didn't like Feministing because of their racism back before I got disabled and started noticing ableism more, but they're pretty popular and influential, I hope some good comes of all this.

And now some miscellaneous links.
sqbr: I lay on the couch, suffering an out of spoons error (spoons)
Monday, May 18th, 2009 08:12 am
These are all awfully late but I kept forgetting.

So, today [livejournal.com profile] 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:
[livejournal.com profile] 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)
sqbr: pretentious quote over a seascape (naughty shell)
Thursday, March 5th, 2009 10:55 am
You know sometimes I feel like trying to work isn't worth how miserable I feel when I have to call in sick for two weeks straight, but then I remember how miserable I felt when I wasn't working. *is reminded why "depression" is mentioned prominently in the "follow on symptoms" of any description of cfs*

On the plus side, I was inspired to write a new disclaimer (see 5a).

*goes off to kill some monsters in FFVI*
Tags:
sqbr: I lay on the couch, suffering an out of spoons error (spoons)
Sunday, March 1st, 2009 08:27 pm
An artist posting to cfids_me (with a quite effective painting of fatigue) led me to Pain Exhibit, artists with chronic pain expressing their experiences. Chronic pain isn't my main symptom but it's definitely there, and since I know a lot of you have chronic health issues I thought you might also appreciate it.

I'm not suprised there isn't a "FatigueExhibit.com", being too sleepy to do anything kind of makes you, well, too sleepy to do anything, including painting your feelings.
Tags:
sqbr: And yet all I can think is this will make for a great livejournal entry. (livejournal)
Wednesday, February 25th, 2009 04:45 am
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*
sqbr: I lay on the couch, suffering an out of spoons error (spoons)
Friday, February 6th, 2009 01:32 pm
Not quite right but it will do until I feel like fiddling with it some more. Inspired by Kira attempting to create the situation depicted :)
sqbr: pretty purple pi (default icon)
Monday, February 2nd, 2009 05:44 pm
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 [livejournal.com profile] lauredhel's slug.
sqbr: A stick figure doing cartwheels saying "Yay" (yay!)
Tuesday, January 20th, 2009 10:15 am
So far I spent half an hour chatting to the new girl while I waited for my forgotten password to reset, and since I can't do anything until someone else gets back from a task in the city am currently lesuirely emptying my 300+ full inbox(*). (Oh and I spent about 10 minutes figuring out how to operate the sandwich toaster without having the circuit break)

Have not been overcome with overwork thus far :D

(*)It doesn't help that in the downward slide that eventually led to me having to leave I became increasingly unable to deal with my email. After making sure none of the new ones were urgent I started from the bottom and I'm currently at 1/08/08...
Tags:
sqbr: me in a graduation outfit. Trust me, I'm a doctor (of maths) (doctor!)
Thursday, December 4th, 2008 08:06 am
I went to my first acupuncture appointment yesterday. It was ok, impossible to tell if it's had any long term effect given how variable my condition is but I certainly didn't feel much difference straight after.

I normally wouldn't touch alternative medicine with a ten-foot pole but [livejournal.com profile] black_samvara said it worked for her chronic fatigue, and my current approach is to try anything that has been specifically recommended by people who've gotten over chronic fatigue (or a specialist I was similarly recced) This approach has the benefit of giving me an excuse to choose not to take the well meaning advice of people who want me to try random stuff that helped them with stuff that was not chronic fatigue syndrome (no offense to people who mention stuff that helped them, since sometimes if it sounds plausible I will try it, it's the "You should do *blah*!" that's annoying)
meandering description )
sqbr: me in a graduation outfit. Trust me, I'm a doctor (of maths) (doctor!)
Monday, December 1st, 2008 08:35 pm
Before I forget:

I went to the doctor again, my test results came back low-but-just-within-normal for Vitamin D and something similar (low or high?) for ANA.

It turns out that colloidal minerals did not mean silver, but actual useful minerals like potassium etc, in the form of concentrated sea water. This stuff tastes really odd (a bit like salted licorice) but I've found it makes a nice addition to savoury sauces. I should check with him if that's an ok alternative to drinking it :D (vitamins etc I wouldn't do that too, but these are metals, they're hardly going to degrade)

He seemed pleasantly suprised that I was having an improvement so fast.

He said fermented soy (ie soy sauce) is probably ok (THANK GOD) but mainly went on a little rant about GM soy which I nodded and smiled through (it's not like I'm going to eat it either way...). He said there's no way to tell if trace amounts of gluten etc will affect me very severely except by comparing my health with them and without them, which is kind of annoying but what can you do. I think I'll wait to get really picky about that sort of thing until after christmas or there'll be no end of angst with my mum's cooking.
Tags:
sqbr: A happy dragon on a pile of books (bookdragon)
Sunday, November 30th, 2008 04:17 pm
So I don't write much. I've written a total of two prose stories since highschool, both a few pages long, and only one of them readable(*). Thus I have never considered doing NanoWriMo.

But as it happens I was inspired to write for the first time in ages this month, and am thus remarkably happy with my final count of about 5,000 words, even if it is 1/10th of a NaNovel :) Not that I'm planning on stopping there, but it is the last day of November and all the Nano counts made me curious as to what mine was.

Was unfortunately too sick for Swancon picnic :( Still, I'm feeling a bit perkier now, and I think I've figured out the problem: the new regime I'm on does help my chronic fatigue a bit, but it does more to remove some of the symptoms I was relying on to tell me when I was pushing myself too hard. Despite this leading to me feeling very buggered today, I refuse to see the removal of pain as a downside :)

(*)Although looking back over it again...I was very young when I wrote it ok? Like, teenage-ish young. No more than one-and-twenty. Also, remembering to back then, I had someone make the "Any first person narrator must be a direct portrayal of the authors mental state right now" fallacy, I'm glad they never read my next story, from the POV of a murderous shape shifting alien :)
sqbr: me in a graduation outfit. Trust me, I'm a doctor (of maths) (doctor!)
Sunday, November 16th, 2008 10:55 am
Since I've been making all these changes to my diet etc, I thought I should record how I feel.

For reference, here is the baseline. Now I have good days and bad days, and psychology plays a lot into that (unfortunately, it's not so much that positive thinking makes me feel better so much that being motivated by something makes my body repress how crap I feel until it is done. I crashed a fair bit after Wastelands, for example) so it's hard to say for certain what long term effect this is having until it's ben a few weeks.

But so far, I actually feel pretty good. For me.
Read more... )
sqbr: pretty purple pi (default icon)
Tuesday, November 11th, 2008 05:28 pm
So I FINALLY got to a recommended chronic fatigue specialising GP today. He started by asking what the "Dr" was for, and then when I said maths his whole face lit up and he started fanboying maths (apparently he seriously considered majoring) which was a nice start. He took my history and unlike all the vague handwaving I've gotten from other doctors was all "Ah, I know what's wrong with and how we can fix it" which was both encouraging and discouraging (I'm not sure anyone can be that sure with chronic fatigue)
Nooooo! Don't take away my cakes! )
sqbr: me in a graduation outfit. Trust me, I'm a doctor (of maths) (doctor!)
Wednesday, November 5th, 2008 09:33 am
Have been skimming through the Canadian guidelines on CFS/ME, which are supposedly the best document on the illness and since it's so long thought I would make notes as I go. This is mainly for myself!
Read more... )
Tags:
sqbr: flying mouse from Digger (fledermaus)
Friday, October 17th, 2008 01:19 pm
So, it's hard to explain very clearly what my health problems really involve, and I know with other people's I often feel confused but not wanting to offend by asking. So, a synopsis.

Not required reading by any account.

Read more... )
sqbr: pretty purple pi (no hugs!)
Wednesday, October 1st, 2008 11:53 am
So, after several months of me taking more and more days off work and being less and less productive on the few days when I did drag myself in, I and my manager discussed it and I'm just not going to go in again until I'm better enough to be able to work consistently (exact amount of time off to be decided after I can find a decent doctor who knows anything about chronic fatigue). Which on the one hand is, obviously, a hugely bad sign about my health and future, but on the other is a major relief since it got to the point where the effort of just choosing what to wear was more than I could handle most days.

I thought about locking this and disabling comments, since I'm not really in the mood to discuss it and don't need sympathy (it's not like it's a sudden shock, and I'm..not always good with well meant sympathy) but hopefully this way I can avoid a lot of awkward "So hows work?" conversations.

Anyway, expect a lot of ill thought out lj posts in the near future since I have nothing else to do and if nothing else it stops me wandering around tiring myself out :) Unless lj decides to stop me posting again!
sqbr: flying mouse from Digger (fledermaus)
Saturday, September 13th, 2008 09:23 pm
Oh yes: saw the doctor today, she agreed that chronic fatigue syndrome is the most plausible explanation for how I've been feeling for the past eight (!) years or so. Didn't offer any solutions beyond "don't overtire yourself" and "have you tried meditation" but never mind. At least I can be a bit more confident in my diagnosis than "I read up about it on the internet and it sounds right" (I did have another doctor suggest it, but his reasons were pretty spurious and debunked by a brief google)

Turns out the tests my usual doctor did (today was me seeing the results) were mostly for different types of influenza virus. Today's doctor was politely incredulous: even I know that the flu makes you intensely sick for a short period, not intermittently sick for a long one. Other than having immunities for every respiratory virus ever(*) I am apparently in 100% perfect health, yay me :/ (that's what they said after my coma, too, with embarrassed looks on their faces)

(*)Well, ok, I got a bit lost during her synopsis, but I got the impression I've had quite a few. Which certainly fits with my experience... Also I don't have nasty things like Ross Rover virus, which is nice to know.
Tags: