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Well, the stats are probably not worth much science wise but like I said, it’s actually pretty accurate based on my activities during the day. It measures movement and heart rate, and based on movement patterns can calculate if you are resting, inactive or sleeping. Obviously it’s probably...

My wearable (Oura) measures how much time I stay inactive (sitting up) and resting (lying down but not sleeping). It’s pretty accurate! I have no idea how it does it, other than probably an algorithm is involved.

I’m getting a referral to see a rheumatologist to check for ankylosing spondylitis. My bad days always include an inflamed, stiff and painful spine from neck to pelvis. The typical timeline and symptoms match my own 100%. The many years of vague and intermittent symptoms before crashing, the...

Reading your description @strategist I can remember this happening to me a couple of times, just as I woke up (in the middle of the night I think). I haven’t given it much thought until now, I guess because 1) it goes away pretty quickly and 2) because I’m half asleep and don’t have the...

I’m a member. What they neglect to mention is that the journalists faked having ME and getting treatment to gain access to the group and steal information and patients names without consent. Very disturbing. Maybe, but this was not government money or even research money, this was patients own...

I don’t know if this is more or less worrying, but I think it’s just you:bucktooth:

@Little Bluestem organizing is my way of trying to control events before they control me:) I’m stressed out because my failing mind can’t hold all the to-dos at once, so I keep planning and planning again to calm myself down! The frustration of not just doing it all myself, in one big swoop, is...

Thank you, @Skycloud :laugh: we’re headed out to sign the contract now!

Thank you, Bluestem!:) We could. But I don’t think we have enough stuff to make it necessary:) I have slowly started to sort through stuff, a little each day, and I will start packing everything we definitely won’t need the next two months this weekend (like winter coats and my collection of...

Or that symptoms present differently in men than in women, like in for instance heart disease.

No, but it’s not published yet, so if you only look at published studies rtx still looks promising. Or they chose to ignore the phase III trial to promote their own view of ME as an autoimmune disease/autoimmune component.

Thank you, @Squeezy :)

I’m considering it. There’s not a lot to pack really, I got rid of a lot of stuff when I moved last time and have avoided getting more in. The biggest job will be sorting through everything to see what can be thrown out. We have plenty of young, strong friends to help us pack and move, and it’s...

My friends who studied psychiatry fall into one of two categories: Those who have trouble getting a grasp on life and think psychiatry will help them (and others) correct this, and those who think they have really figured life out and just need a diploma that will allow them to use all this...

One can hope!

God forbid they listen to the experiences of patients and data collected by patient organizations...

Oh, definitely! I LOVE gardening, and like you I find it’s one of my favorite activities that can still be enjoyed with ME. I have planned for this for two years already, my favorite plants have been planted in deep pots on the balcony so they one day can move with me and be planted somewhere...

Thank you @Invisible Woman and @hedgehog I’m over the moon! I didn’t think we would be able to afford something in that neighborhood, it’s so convenient with the metro close by and the forest paths starting right outside the door, but a lucky break let us find a renovation project that had...

@Allele thank you! Feels like my life is moving forward in a small way:) I’ll soon panic because I’ll realize how much there is to do and how little of it I can directly contribute to:nailbiting:

@Dechi consider yourself tagged! We’re planning a full renovation of the bathroom as well as reserving some funds for some external pipe work planned before we bought (by the county). If the funds can be stretched we’ll also have someone strip and paint the whole inside, and renovate the...