BBC radio Anna Foster - Interview with Merryn Crofts' sister and mother

Merryn Crofts is the second person ever to officially die of ME in the UK. Her mother and sister speak exclusively to the programme.

Charles Shepherd and MP Carol Monaghan are also interviewed.

Anna Foster 26/07/2018

ETA:
- First section about ME begins at 10.17 min with Merryn's sister and mother
- Charles Shepherd at 26.17 min
- after the interview with dr. Shepherd there is news etc but starts up again at
2h 10 min with a repetition of the conversation with Merryn's sister and mother
- MP Carol Monaghan at 2h 14 min
- 2h 17 min Ben - MD and ME patient talk
- 2h 19 min Lisa full time carer for husband with ME

The story about Merryn is heartbreaking. The sister and mother is doing an excellent job telling her story.

Is this a programme many listens to?

 

Is there any more after the first bit ends at about 34.00?

 

Yes, I am listening through it now and writing down the times for the ME sections, Will post them soon

ETA: Have edited the first post in the thread.

 

I liked it too. Well done!

The only thing I am a bit uncertain of was dr. Shepherd talking about prognosis. As far as I know it is not documented that young ME sufferers have better prognosis? But at the same time I understand why he stressed that it is rare to die of ME and many patients improve some over time. I am sure Merryn's story can be very frightening to hear for parents of children with ME, children/adolescents with ME and anyone who are about to familiarise themselves with the disease.

 

@Kalliope Thanks for posting!

 

Sounds like Carol Monaghan was cut short for the usual rubbish Govt statement.

eta: also noticed that although they repeatedly say Merryn was only the second person to have ME put on her death certificate, they never say who was the first, (ie Sophia Mirza). I would like them to broadcast her name; or are they scared people might Google it(?)

 

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.