Merryn Crofts - media and inquest

Thanks for sharing this hear, I'm really pleased to see it. I'm not going to listen right now as I find Merryn's story so heartbreaking, however I am SO SO glad that it is being talked about and immensely grateful to her mother and sister for continuing to speak out, it can't be easy.

 

Great interview by the family. They convey things well in a very moving way and it’s amazing they are still advocating post all what’s happened and the fact that ME as a battle is no longer ( sadly) theirs.

I don’t really agree with how dr Shepherd frames prognosis. For him there’s “the severe” odd, difficult, distinct and then there the rest, who apparently are on an upward trend to some degree at varying rates

Firstly although the prognosis for longer term severe ME is very bad currently, within the severe group some are going up, some down and some staying the same. Likewise in the other groups. There’s also some fluidity with all groups, including severe and moderate rather than the severe just being this severe “other “ and 25% are mild, yet when are those in work made to feel like an “other” in the community

Also whilst in an ideal world of great ME care, from whatever severity people are in the first months the hope is most would rise, we know right up till the present day generations haven’t had great care and whilst some might still be able to turn that around with good outcomes like Euan proctor, Jessica Taylor, even from extremis, others are set off on a downwards path or stuck at a level from the harm caused.

 

Merged
I noticed this interview hasn't been posted and felt it adds to our ongoing discussions about issues around feeding for those severely affected. Note there are some parts in this interview where they talk about Merryn's gastro tube insertion that are especially distressing to hear (and I would contrast it with @Amy101 post here noting how Merryn's later health care providers--who also knew nothing about ME/CFS--were still able to provide compassionate and competent care without the casual sadism):

https://www.youtube.com/watch?v=NrRpTJaCie0

 

At 24:29 note the parallels with Maeve's inquest, where all the medical staff on the stand used the same (likely coached) language to obfuscate the actual thinking and practice.