Manchester Evening News: Bedbound and in unimaginable pain, watching my daughter waste away and die from ME was torture

Yes, I pointed out how cult-like the LP crowd are on Facebook. Wonder if that'll remain...

 

Yes, I very much agree. Seems incredibly insensitive and glory-seeking to exploit Merryn's story without any prior contact with her family, until then provoked into it after the fact. Unfortunately from what I've seen in the @Action for M.E. thread, this seems horribly consistent.

 

Self-serving seems to be the most accurate description for me. Piggy-backing on all sorts of media-exposure for the greater good of afme instead of the greater good of patients or people involved in said exposure.

 

Rochdale Online with an in depth and informative article about Merryn Croft, her family and ME.
Her family is doing an incredible awareness job for ME. I am in awe of them, particularly when they are doing this after having suffered such an enormous loss.

Heartbroken family tell of how daughter slowly dies after battling ME

- "People find it hard to understand, with the medical advancements, how something like this can happen in this day and age.”
“This country is so behind America and their research.
“ME is truly devastating for the 25% who have severe ME, lying in a dark room being tube fed, paralysed with no medical services. They are some of the sickest people receiving the worst service. People need to take ME seriously, even though they might not have heard of it.”

 

I didn't know before about the "2% very severely affected". There may be other things in the article that are new, as opposed to the other articles which tend to be identical.

 

Has the BBC ever done anything like this before? Or have they always toed the BPS line?

 

I've read somewhere that they did a big documentary some decades ago but there was a terrible backlash from the BPS-crew, and since then there hasn't been anything similar. Can't remember the name of the show it was on though. From recently I remember a piece being prepared that would be critical of PACE among other things, but that was cancelled after someone intervened. @Jonathan Edwards and @Russell Fleming should know a bit more about that.

 

I remember seeing a documentary some years ago. Could have been BBC, might not.

It was really good. One case couldn't be on camera as social services were involved, so instead they showed the changing season from her bedroom window when her family were speaking.

There was a young, pre-teen girl,already a cancer survivor who went voluntarily into SW's unit. The family didn't realize until they tried to visit that it was a locked ward and visits were strictly controlled/limited. She came out worse than she went in.

It was very good. I watched in tears, turned to my husband and said " surely, now things will change, now people know". Nope.

ETA - just realized how negative that sounded. That was then, this is now. I am very grateful to the Croft family for being so generous in sharing their experiences. Maybe this time....social media & all that.