Emma

Rejoined to learn about new treatments for ME. (She/her)

Previously @meactionscot, ERSC, Zero Tolerance

[Emma @Emshoscot]

@alltherobs @cstroeckw Mind if I ask how you got tested? Was it NHS or somewhere else?

[Emma @Emshoscot]

@TimHuttonAu I tried for ages with ivabradine. It blunted my heart rate but didn’t improve symptoms.

[Prof. Bethan Evans @DrBEvans]

Join us 14 Sept 2-3.30pm as we launch resources from @BritishAcademy_ project on gendered experiences of health & social care for people w Energy Limiting Conditions @chronicinclude @annalouruddock @anabeonline
@alison_allam @octoberpoppy @thelrm
https://t.co/7LtrBlMBCw 1/4

[Emma @Emshoscot]

@JenM91500106 @Annakwood Thank you, I hadn’t suspected the ivabradine so will have an experiment and see if it’s the culprit!

[Emma @Emshoscot]

@JenM91500106 @Annakwood Would you mind expanding on break through tachycardia? Was it tachycardia lying down? I take ivabradine and it’s blunted my high heart rate but getting tachycardia whilst resting and trying to figure out why.

[Emma @Emshoscot]

@chydorina @remissionbiome Great :) thank you

[Emma @Emshoscot]

@bethereificould Could I get one to put in the local centre that does HBOT- lots of people with Long Covid and ME go there? https://t.co/aIkLo10wtG

[Emma @Emshoscot]

@bethereificould Local support groups sometimes have newsletters or even email newsletters which can reach more people not on social media? ME Association has a list on their website. Love the project ♥️

[Emma @Emshoscot]

@DaniGaravelli1 Twitter won’t let me dm you without paying £! There’s a story about the history of patients with post viral conditions in Scotland (involving lots of medical sexism) that leads up to the present day with our treatment (or lack) of folks w Long Covid. I’d love to talk about it.

[DecodeME the ME/CFS Study @DecodeMEstudy]

#DecodeME is still recruiting participants whose questionnaire and DNA data will help us understand even more about #MECFS and identify biological causes of the illness.

Sign up: https://t.co/vrS2RACAQJ

Read some initial results: https://t.co/kaZ83SpIbC

[Emma @Emshoscot]

@SockFoam Me too ❤️‍🩹 have never heard of anyone doing before.

[Emma @Emshoscot]

@hopefullizzy @Knitty19 @SusanD1408 @Chronically2784 Thank you, my blood pressure is normally ok so didn’t think to check pulse pressure. Will have to measure it.

[Emma @Emshoscot]

Any other #ME or #LongCovid folks having trouble with polar armband accuracy with #visible plus? I’m finding it’s often 10-15 bpm lower than my actual heart rate. Been trying for days on different arms, positions and tightness to see if can get consistently good reading.

[Emma @Emshoscot]

@Squashedhedgi @tiredguineapig I would’ve agreed with you fully 6 years ago. In 2022 I thought they promised £2 million for research- proportionate if not more than some other charities? And would 25% group be better for supporting pwSevere ME?

[Emma @Emshoscot]

@Knitty19 @SusanD1408 @Chronically2784 @hopefullizzy Interesting I don’t know my pulse pressure. But it definitely struggled in other places when I stood or stand so that makes sense.

[Emma @Emshoscot]

@cstroeckw I started to get this recently but hadn’t connected it to melatonin. Will have to remove and see if it correlates.

[Emma @Emshoscot]

@hopefullizzy Thank you- I’ve been trying different positions and have had to have it in same specific place !

[Emma @Emshoscot]

@tiredguineapig @meactionscot fab group of patients and carers so energy is always limited and needing more folks!

[Emma @Emshoscot]

@tiredguineapig Also I don’t think they keep lots of £ in reserves- which was a bug bear of mine. If you’ve got a bit of spare energy, live in Scotland and want to join a grassroots group of patients and carers (not a charity) then join @meactionscot I’m very biased but think it’s a