I don't know if anyone here is on Second Life but a local university has set up a ME/CFS Second Life centre for information and socialising which I thought people might find useful: The ME/CFS Centre.

I joined it as part of a study into whether online socialising has benefits for people with CFS/ME, and that study is where the funding came from, but the resources and mailing list are open to anyone. I've been to two of the Second Life meetups and it was fun "hanging out" with other people, it was also nice that everyone understood when anyone said "Oh, I am out of energy, I have to go".

Second Life is free and not TOO hard to get into(*), though personalising your avatar is one of those time sinks you can put an indefinite amount of time into :) And if you don't like second life people post some good stuff to the google groups mailing list.

The chats tend to be voice-based but it's ok to use text if you don't have a microphone or can't get it to work etc.

Are you guys involved in any other online CFS/ME groups?

(*)Except when it is, apart from the bandwidth it apparently just refuses to work for some people.

I've had sleeping problems since I was twelve and more particularly since I developed ME/CFIDS thirteen years ago. I've amassed a lot of knowledge by now, some of it fairly well-known, some of it very little-known. If you have any sleep problems, read on.

( Read more... )

Cross-posted to my journal and cfids_me.

We've had a few posts popping up recently about circadian rhythm (sleep) disorders, and I'm starting to suspect that half of us have there. So here's a little poll. You can read about circadian rhythm disorders here, and this is a good site for both light therapy and darkness therapy. It's geared towards bipolar disorder and depression but it's very well-written. Other good sites: Lumie for light therapy (I'm not specifically endorsing their products, though, I prefer other ones myself) and Low Blue Lights for darkness therapy (ditto: I bought yellow bulbs at the local shop and got a prescription pair of specs made up with orange lenses at the optician).

Please note that for the purpose of this poll, long sleeps during the daytime can include your usual night's sleep when it's light outside (so unless you live on the equator and get up at 4 or 5 am, this will include everyone) as well as sleeping at totally unorthodox times of the day. If you are using an eye mask, then count that as complete darkness. I think it's possible to have a combination of circadian rhythm disorders. I for instance appear to have some unholy mix of DSPS and Non-24 Sleep-Wake Disorder: uncontrolled I run on a 25 hour cycle, if you control it a bit then I can get to 24 hours but I tend to fall asleep much too late and it will eventually creep later, and you have to throw a hell of a lot at it to keep it where it should be. I'm compiling a long post about my experiences with sleep, I'll put it up soon.

( Poll )

Hi

Over the last 3 or 4 years I have been sleeping later and later. I think this is partly because I am a little anxious about going to sleep because I have gone through phases in the past when I have had trouble sleeping at all. However I also think it's cause my body has to be 100% exhausted before I actually sleep, which from what I've heard, is fairly common amongst CFS sufferers.

Anyway, I am now not sleeping until about 6 or 7am, and getting up around 1 or 2pm, which isn't good.

So I was wondering if anyone had any advise on getting to sleep earlier? I have tried just forcing myself to get up earlier, but that made me so ill that I couldn't literally function, and it didn't work anyhow. All that happened was that I would either end up falling asleep during the day (and consequently being back to where I started), or I would sleep a little earlier, but then go back to my normal sleep pattern the day after! Also, I have tried taking sleeping tablets at an earlier time every night for 14 days (at the advice of my doctor), but that didn't work either. I felt dreadful whilst I was on the tablets, and after I finished taking them, my sleep went back again to how it was before.

So can anyone recommend anything? I have considered trying a lightbox (my mum has one so I can use hers), but I was wondering, would a lightbox help if I used it in the afternoon? Because I cannot get up in the morning, it makes me way too ill and I'm not prepared to do that to myself anymore!!!

Also are there any vitamins/minerals/herbal medicines that could help? Or maybe EFT - I've heard people say that can help with all sorts of things!?

I finished my slideshow to raise awareness of severe ME, thanks to everyone who took part

So, I'm trying to chart my fertility using my BBT (basal body temp) and OPKs (ovulation prediction kits). Getting good results for each depends, to an extent, on the time of day readings are taken. The problem is, my sleep schedule functions on something like a 26 hour clock, so my waking and sleeping times are constantly rotating, and not very consistent in length. So, has anyone else been able to get good results with these methods despite a changing sleep schedule?

1. The BBT is supposed to be taken at the exact same time every day, but only after a minimum of three hours of sleep. I can't meet those requirements for more than a few days at a time, so I've been taking my readings as soon as I wake up, no matter when. And my chart looks like a mountain range. :(

2. The OPK instructions say that the hormone tested, LH, is produced in the morning, so the tests should be taken at about 2pm. No indication of how they figured that was the best time to test, so I don't know if that applies when 2pm isn't necessarily my personal afternoon. Does anyone happen to know any rules for when to test with an inconsistent sleep schedule, or what it is (sunlight, when you wake up, the clock) that regulates the time of day of the LH production?

Here's a link to an op-ed by Hillary Johnson, author of "Osler's Web", in the NYT: "A Case of Chronic Denial"

http://www.nytimes.com/2009/10/21/opinion/21johnson.html?ref=opinion

 I had an MRI, about 4 years into CFS, fibro & my myriad problems and the doc didn’t order anything specific.  When I mentioned to the technician that I had just got over a case of hives that lasted 3 years, he didn’t think the contrast was a good idea since my doctor didn’t mention looking for anything specific. 

But now I’m more slow than I was back then.  I’ve become almost completely unable to retain information that I read for more than a short period of time.  Anything I reference regarding health info I either learned before about 2007, or I’ve kept files of the things I learn that I find important so I can access the info easily if needed.  Sometimes, if I access it often enough, I’ll eventually retain it. 

But it’s at the point where I can read an article and not have a clue what I just read.  I may read it again, or just give up altogether. 

My husband has noticed not a slowing in my speaking voice, but a slowing in the amount of time it takes for me to get things out.  In other words lots of long pauses between saying whatever it is I have to say.  I’m aware of it too and it’s frustrating for me because I’m aware of myself in my head searching so hard for the next word or words I need to get out.  It’s easier talking to my mother or aunt, I think because we’re so close, if I can’t finish my sentence, most of the time they can but not always.  They do it too but they have age on their side…and my mother has brain damage too. 

I know everyone goes through the whole walking into a room and can’t remember why.  But I’ll leave, remember (or thought I did) get back in the room and forget again.  I’ll do this up to 3 times before I either remember or give up…it might come back to me a half hour later…or at some really inconvenient moment like when I just got into bed for the night.  It just seems more frequent than I remember it ever being. 

I got enough crap to worry about there’s a part of me that doesn’t want to know if there’s anything there.  

On the other hand, I’ve always felt really great right after an MRI of or near my head. 

I just really don’t like feeling like my mind is going in a way much worse than a few years back.

From an article in UK newspaper The Independent:

[T]he senior author of the study, Judy Mikovits, director of research at the Whittemore Peterson Institute in Reno, Nevada, said further blood tests have revealed that more than 95 per cent of patients with the syndrome have antibodies to the virus – indicating they have been infected with XMRV, which can lie dormant within a patient's DNA. "With those numbers, I would say, yes we've found the cause of chronic fatigue syndrome. We also have data showing that the virus attacks the human immune system," said Dr Mikovits. She is testing a further 500 blood samples gathered from chronic fatigue patients diagnosed in London. "The same percentages are holding up," she said.

If the findings are replicated by other groups and the XMRV virus is accepted as a cause of chronic fatigue syndrome then it could be possible to treat patients with antivirals, just like treating HIV, or to develop a vaccine against the virus to protect people from developing the condition, said Dr Mikovits.

I don't know about the rest of you, but now that I'm stuck at home ill, I tend to spend far too long at my laptop, and sitting poorly (if not lying down) at that. I posted not long ago about installing Smoooth Deep Breathing Assistant (go for the earlier version, it's better, and I wouldn't bother paying for it as the idea is great but the quality poor, just keep the trial version), and I'm getting on very well with that. Once I found the right pattern of inhale/exhale ratio and pauses, I settled down nicely. I couldn't breathe very slowly at all to begin with, and I've managed to slow down a great deal since then, which I assume will be benefiting the muscles involved in breathing and so forth. It's nicely calming, too.

If you have a Vista or Google sidebar, I strongly recommend StretchClock, which rings a little alarm every hour (or however often you set it) and then links you to a video showing an exercise. You can set the video to come up automatically or to come up when you click on the gadget; I've gone for the latter. The exercises only last a minute, they're easy enough that if you can sit up at the computer, you should be able to do them, and of course they're good for relieving problems caused by sitting hunched over at the computer. I also found a Desktop Yoga gadget for Google Sidebar, but since I prefer the Vista one and haven't been able to work out how to convert it, I can't use that. I think the StretchClock is better, anyway. I've just started using it yesterday, so I may report back in a few weeks to tell you how I'm getting on.

Does anyone use anything else like this?