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Can only talk from my own experience, but, she has prescribed all sorts, including stuff that is very much off limits for GPs. We have also discussed LDN as an option. I've managed to move most things to my GP, with the exception of midodrine, which they flat refused to go anywhere near, but...

Yeah, I noticed the other day that her prices have gone up a lot for an initial appointment £500 and is £300 for a follow-up iirc - both virtual. I think she's probably a victim of her own success and had some issues of her own over the last several months. The auto reply when emailing suggests...

Hilo update - another couple of months on and a few of the same niggles. I calibrated as required and my BP seemed a bit on the high side again, I left if all month, thinking it might be elevated as I have some personal stuff going on atm, but, every time I did the phone reading (it encourages...

They only take their foot out to change feet!

The cynic in me tends to agree. I guess though, this is their first pandemic-influenced survey and might give a flavour of how things are and with a healthy reference to NHS services, they are at least going to be able to cite more up-to-date data. Will come down to what they actually do with...

And like buses, two lots of updates from AfME in a morning. https://www.actionforme.org.uk/research-campaigns/our-research-work/big-survey/

Don’t have the brainpower atm to consider/think about this other than sharing; https://www.actionforme.org.uk/action-for-me-joins-our-future-health/ Discuss..

And the narrowing of the criteria causing confusion and upset. https://www.bbc.co.uk/news/articles/cm28q5gqvppo

I feel it had been clear to pretty much everyone applying a vaguely sensible eye to the MEA org structure and many of the decisions made (bar the MEA themselves obviously) that they needed a CEO or at the very least an employed senior leadership role (not recruited from within) separate from the...

Had they allowed non-members to respond to the survey, it would likely have told them a lot more, such as why many of us are no longer members.

When I looked at this, they had tightened the criteria of eligibility for a CV vaccination (tables 3 & 4), but still left enough scope for conditions not specifically listed. I booked mine and was given it earlier this week. The pharmacist administering asked why I was eligible (am only 50, so...

A three-weeks-in update; Am still broadly happy with it. Given the early travails and calibration need, I've moved from the obsessing about what the numbers are phase to a just let it do it's thing, phase. Battery life was just shy of the 2 weeks that they said, but, I was sync'ing multiple...

Of course, because they are no longer on Twitter, many will have missed that this is happening. I for one have. SMH.

Any time I see an MEA thread get updated, I have a sinking feeling, asking myself 'Oh dear, what have they done this time?'and am compelled to go see.

The point she is also surely missing here with her response (noting in agreement with @MrMagoo as it being decidedly pass-agg), yes great, I/we can do FUNCAP through choice at home or whatever, but when referred to one of these services (that will still be stuck in the dark ages), there won’t be...

I guess maybe many have them but never knew that was their purpose/origin. It just stuck out though as symptomatic of the sort of things might be wrong with the surveys (I’ve not fully read them and was put off by Tyson’s outburst on here). Whilst likely not with malice, more, just a ‘not...

Will happily share progress. In terms of the wearable, it’s literally just the wrist thing you have to wear, it’s about 1cm wide, very little to it, like a really small watch strap. Just need the cuff for periodic calibration, so, it can sit in a drawer until needed (they say once a month...

I’ve bought one of the Hilo (previously Aktiia) wearables and so far, so good in terms of comparison to the Omron cuff device I have used previously (and appears identical to what my GP surgery uses). Hilo comes with the wearable band and a cuff that is used periodically to calibrate the...

A gaming chair?! That most common of seating choices for pwME.. (happy to be corrected and hear that you all have them).

For those in the UK who are eligible and have Covid vaccinations, bookings open today for the winter booster - available from 1st October. https://www.nhs.uk/vaccinations/COVID-19-vaccine/ Obviously, some can't/won't have them, but sharing for those who can/do.