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My RHR is affected regularly by other issues, it soars then drops, no matter what I’m doing/feeling

I thought the ME Community was her community for 14 years. She does realise the ME community isn’t a homogeneous blob?It’s just people with something in common.

I am impressed, dismayed and fascinated! Amazing research skills. A tentacle running from insurance companies to an app to an ex-MEA fundraiser. It seems Fiona made friends with Paul a little while ago. Interesting to see where this goes next. A side issue - it feels to me somewhat...

Thanks, I don’t Facebook like I don’t tweet!

I’m using visible plus - I wish they had a forum on their site for people to chat about how they’re getting on! I’ve been devastated at how much I overexert, I’m so far away from being able to “rest” enough, just due to the usual activities of daily living.the weekly or fortnightly trip out to...

Other MEA fundraising https://www.justgiving.com/fundraising/1millionstepsforme

I had googled as a result of the Co-signed letter by Fiona and Paul Garner, in response to George Monbiot’s excellent opinion column 12 March 24. I saw she’d been involved in fundraising for the MEA not too long ago (if this is the same person)...

You can edit these days, thanks to Elon. You could always delete the tweet, which would leave the responses! They didn’t disappear with it.

The only way to “preserve” is to enter the link at the time into a web archive site, or to screenshot. Yes, twitter is full of people who amend their tweets after the fact. This leaves the people replying looking a bit silly and the original tweeter looking much better.

I just thought she was interesting because when I googled, she had been heavily involved in the MEA until 5 years ago, so she’s done a massive u-turn.

These are certainly people with a lot of energy

I much prefer Instagram.Less arguing.

I honestly don’t know why people still use twitter, it’s just awful. People screaming into the void about what they do or don’t think/like/promote. Then arguing with “the other side”.

Wow I used to know Fiona Fox

Interesting…does she have her own thread? I wouldn’t say it’s patronising, there’s a real kind of “jolly hockey sticks” type of language on twitter. Especially in the face of “haterz”

Just working out where he fits in, assume this is why he had to team up in his reply to Monbiot, as he didn’t have ME.

I will admit I’m prone to misremembering accurately. Edit -I meant inaccurately! At the same time it feels, to me at least, that there was some “hinting” or “breadcrumbs up the garden path” blurring of him having ME. So Garner recovered from Long Covid. He contracted it around the first UK...

I see the letter was from both Fiona Symington, who developed ME after living with EDS and chronic pain and then was “cured” of ME and pain, and Paul Garner, who presumably was cured of Long Covid. So is Garner no longer claiming Lightening Therapy cured his ME/CFS? Fiona Symington...

Post copied from the George Monbiot thread This post has also been copied to a thread 'Curable' mind-brain training app and ME/CFS, including the role of Fiona Symington I see the letter was from both Fiona Symington, who developed ME after living with EDS and chronic pain and then was...

Post copied from the Paul Garner thread and a number of following posts have been moved from that thread Some posts refer to a letter sent in response to the George Monbiot article by Fiona Symington and Paul Garner - thread here: Opinion: ‘You don’t want to get better’: the outdated treatment...