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@ahimsa thank you, that’s very helpful! I get mouth ulcers very easily, and sometimes feel like they have taken up permanent residence and formed townships. I will look into SLS and see if it can help me to stay away from it.

@Dechi I looked into it last year because of my 'burning' spine, long term on-and-off pelvis pain and inflammation, etc. I tested negatively for HLA-B27 that 90% of AS patients supposedly test positive for. Considering how relatively rare AS is coupled with the negative antibody test my doctor...

Another version is something like this: “Well I don’t know if this works for everyone or anyone, but at least these patients are willing to do something about their situation and listen to professional advice. That’s what’s most important here!”

Just didn’t want to write Germany twice! :) My point is these countries should have more people willing to contribute, we just need to figure out how to reach them.

@Kalliope can I ask what hospital you were turned down at? I’m considering asking for a referral for POTS, but if I’ll just be turned down there’s no point using energy I don’t have getting it:)

Sorry forgot to tag you above, @dave30th :)

I think the first thing to do is to actually raise the fundraising goal to 150k or whatever you need for a full time position. People tend to adjust to the goal at hand, and some people might come in at the end and see it’s already fully funded or close to it and decide their money might not be...

Kaiser Permanente changes in ME/CFS policy I think :)

Rumor is it went very well, from what I can tell it's an early Norwegian equivalent to IiME, organized completely by a severely ill girl and her parents. Below is a fb post with some pictures and a short summary, hopefully more info/videos will be published later.

Day 1 and we're already at 10% :) I'm guessing many people (like me) will be donating in a week or so when it's April. ETA: +30 minutes it's at 12%!

Unfortunately I don’t. This is a figure I have seen used repeatedly by the Tymes Trust and others (podcast, twittter, etc.) but I don’t know what it’s based on, which is why I wrote “according to”. edited: name

According to Thymes it happens to 20% of all families of children with ME. That is a huge number, we’re talking 5000 families (based on 25k children with ME in the UK).

Allodynia is one of my major PEM symptoms, like you I mostly get mechanical and kinetic allodynia. From what I can tell it’s mostly seen in patients with ME and FM, which suggests it’s probably neurological in origin?

It comes and goes, but a lot worse than before ME. We had to buy a dark rug for the living room because glasses of wine kept falling on it:bag: The more tired I am the more I will struggle with words and with coordination, when glasses and words start to go missing it’s past my bedtime.

No suggestions, just wanted to say that you could have been describing me (except it's my right leg that keeps going numb, quite often, not my left)

I think it works more by reminding you of your posture than by actually holding you up (ie., makes it uncomfortable to slouch), in which case I wouldn't worry about losing muscle. There are other products that connect to an app and buzz if you slouch as well, if you're uncertain.

@Snow Leopard Maybe I see it differently because I'm severe, but I can pass my AT just by sitting long enough. Just proves why they were right to exclude severe people and POTS, though:)

If you have POTS it is. But they excluded pwPOTS (?), which was sensible if you ask me for that very reason.

Very interesting, yes. I go from severe to almost moderate most summers, the shift usually starts around May and peaks in September. I don't get outside at all in the winter, not that there's much light to be had anyway, so I supplement in the winter months. Hopefully this year I will get out...

@Amw66 I’m outside Oslo, at 59.9:) Pretty far north, but a much milder climate than you would expect thanks to the Gulf Stream. The farther north you get, the more dramatic the changes will be in daylight hours around now. It could also be related to the accompanying temperature changes, we’ve...