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Bit of an update; I managed to get referred to the specialist who is very helpful. I'm on salt tablets which raised my blood pressure and lowered my heart rate over night. The worst of the coat hanger pain has eased and anti-inflammatories are keeping it in check. So I'm much happier :)

We've organised a performance to raise awareness and funds for ME at Wheal Martyn, China Clay Museum, St Austell, Cornwall. We hope that people with ME, their families, carers, friends and members of the public will come along to listen, connect and celebrate the amazing strength and resilience...

Please don't feel bad Jan, the choir leader is used to putting on concerts so there isn't much for us to do. Although the poster has just been finalised so we can start sharing and promoting. I don't want to hijack this thread so I'll message you :)

I've no idea what we're singing yet @Jan, but the fliers/posters are being finalised right now! (Planning feels all very last minute to me, but I forget how much healthy people can achieve in comparison to us spoonies!)

Hi @Robert 1973 it turned out so lovely, well done you! The text and images are perfect. Kaeley's harmony is beautiful and compliments the song so well. And well done choir, recording and uploading is hard cognitive work (I cheated and got my choir leader to record me, I couldn't have managed...

Or realise how useless it is after a few sessions and give up.

I found the font uncomfortable and the questions repetitive, but tried not to overthink it and just answered instinctively. Couldn't rate my top 3 worst symptoms in order so left that blank. I assume they could work it out from the answers given previously -I could've worked it out from the...

I did that and somehow found myself retweeting screenshots of Nigel Farage talking about his online abuse on Sky News today. In retrospect I'm not convinced he really did say 'One lady told me my hair reminds her of that time she found a dead badger in a bin' or 'Someone said I looked like a...

Personally I find tone policing in our community infuriating. Things have changed in the last few years and we don't need to be as careful as we did 5, 10 or 20 years ago. We have voices and we should raise them in the face of ignorance and injustice. If people with power over our lives are...

Yes, pain, no mucus. I get very sore and bleed a little in response to dust, cleaning sprays, soot, pollen, perfumes, traffic fumes etc. I'm fairly certain I have an inherited mast cell disorder. Sterimar is just a salt water spray, you squirt it up your nose then blow, it washes away the...

Sterimar nasal spray works for me :)

We know she conflates fatigue with ME, those who have recovered will be the teenagers who were fatigued due to poor sleep hygiene or those who would have recovered anyway.

My money is on him being a narcissist.

Since they usually do more harm than good with their magical thinking, chakra aligning, meditating and pity poor Esther Craweyling I count that as a win.

You won't get an answer out of them, they're all holed up in a broom cupboard hiding from the scary bedridden activists. @Esther12 Whoever wrote this factsheet is approaching St Esther of Crawley level own goals. Surely no health journo reading that drivel is going to take it as gospel? The...

Pfft. Same old desperate smoke and mirrors, minimisation, misdirection and dusty strawmen. I'm not going to waste any energy knocking them down. Interesting how the magnitude of patient dissatisfaction is reduced to the SMC favourite phrase 'minority of activists', but then swells to become...

Wow! Now that's news that definitely calls for bunting, cakes and quite possibly street parties!

I haven't read anyone in this thread interpreting them joining S4ME as a very positive signal. Maybe one or two members have said 'Well, maybe they'll learn something' but I haven't noticed anyone hanging up the bunting or opening the best biscuits. I know, I've had FB posts on their page...

We are a public internet forum, open to everyone who has a valid email address, isn't a spammer and plays by the rules. Vlad the Impaler could be a member (if he was alive) and we wouldn't know (unless he used his actual name and started discussing impaling techniques, side effects and trial...

Hi @Nathalie Wright yes, I get those symptoms. I put them down to MCAS. I found this article quite interesting https://www.medscape.com/viewarticle/893858 Avoiding as many triggers as possible helps a fair bit. @Justy might have some useful tips.