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I wanted to comment on the stat that we’ve heard in the inquest about the hospital seeing around 5 very severe ME cases per year. I’m sure that’s true but it concerns me that people hearing that will conclude that there’s such little demand for specialist services for severe and very severe...

Thank you for doing this – and much more such as your Qeios piece – your dedicated advocacy gives me hope!

Thanks @bobbler – I’ve been meaning to say that for an age but went down for a bit and only resurfacing now! :-)

Thank you so much @Nightsong that’s really helpful! I think because of the acronym the two have merged in my mind and I mistakenly thought the British Psychological Society was linked to the biopsychosocial model. Seems daft now! Bit less of a dramatic shift than the proponents of the...

Hi everyone! I’m wondering if anyone can help me please?! I know an ok amount about the BPS issues and their history with ME but I don’t know anywhere near as much as many on s4me and I really want to make sure I’m getting things right in this survey. It seems an important step forward that...

Thank you very much to you and your team @Chris Ponting it means a lot to know people are working so hard and passionately on our behalf!

Gutted. I find it hard to understand how the coroner believed what the medical and social services staff said in court when so many of their notes completely contradict that, instead suspecting psychological issues. At the very least though, the findings may inform the public that ME can...

I agree, though it may be hard to extend the results to someone as severely ill as Maeve, but at least there would be some more research to draw from! Your mention of benzodiazepines also puts me in mind of how Abilify allows Whitney Dafoe to tolerate more during the time he’s taking it – if I...

Thanks @Haveyoutriedyoga and @Jonathan Edwards – I feel like I have a better rounded understanding of it now. And I agree, we desperately need reliable studies on this (and so many other things) before we can categorically say what is or isn’t helpful. I was taken from moderate to severe by a...

Does anyone know if saline IV was tried to see if it helped? Because even if it helped for half an hour then maybe it would’ve allowed Maeve sit up to be fed – that could’ve made a crucial difference given she died due to malnutrition. I won’t pretend to understand the complexities of IV saline...

I’ve tried various searches on google and can’t find anything. I imagine it wouldn’t be immediate but maybe there will be transcripts available from the inquest at some point?

@dave30th did you manage to get back in in the end? Sorry you and others were locked out. Thank you so much for covering Maeve’s inquest and for your unwavering dedication to the community!

Thank you so much to everyone keeping us all up-to-date with the inquest, hugely appreciate it!!

Moved posts Here’s where I read about it and another article that’s relevant too. There aren’t many studies because it sounds like it’s difficult to measure blood volume without specialist equipment but the info laid out here sounds logical to me...

I think it should be made clear to doctors unfamiliar with ME that pwME often have a blood volume 20% lower than a healthy person – the blood itself isn’t necessarily out of balance (electrolytes etc) but we just have so much less of it and that’s why IV saline needs to be administered. Dr Bell...

***TRIGGER WARNING*** I’ve just happened on this Reddit. Thread about Carla – think it’s relevant here in the context of the Reddit thread about Maeve. There are some upsetting and shocking comments in here too. I can’t believe these are the people who are supposed to care for us. I know...

Hi everyone! I emailed Betsy Ladyzhets from The Sick Times about Maeve’s inquest and they’re on the case already, which is good. She asked me if there were any articles I thought had done a particularly good job of covering the inquest and would recommend to other readers? I’m not well enough...

Thank you and I’m glad they covered Maeve’s inquest. (I tried to search for an article on the BBC national news site earlier but it didn’t show me any articles at all, which is why I thought they hadn’t – I guess because it’s by BBC Devon as someone pointed out earlier (and thank you for that!)...

No coverage by the BBC at all, which is very disappointing. I submitted a complaint - link below in case anyone else wants to also: https://www.bbc.co.uk/contact/complaints/make-a-complaint

I just wanted to let you know that right now Maeve’s story is the most viewed story on the Guardian. I hope that means both Maeve’s horrific treatment and an understanding of ME as a seriously debilitating illness are reaching people outside of the ME community.