Merryn Crofts - media and inquest

Unfortunately this link does not work in the Republic of Ireland. I'm guessing it only works in the UK.

 

I can't view it but I am sure it was very good and done sensitively. Such a heartbreak.

 

Too bad video is not available to watch everywhere... Maybe someone could convert it and repost without this limitation?

 

I'm not on FB but gather Merryn Crofts family have expressed some concerns on AfME FB page (?)

eta:
there is no moderator note to explain that this and the next few posts were moved here. I originally posted this on the AfME thread.

 

And from what I can see Sonya seems to have addressed them.

 

Still, it's all rather tacky, isn't it?

 

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.

 

https://twitter.com/user/status/981895534259638273

 

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.

 

This was a very well done news item in the UK from 2006; but then we got the NICE guidelines and then PACE.
So sad that history is still repeating itself:

https://www.youtube.com/watch?v=NNWWjRx8tJM

for those on twitter it was recently tweeted
https://twitter.com/user/status/981962109327167488


eta: this is the twitter account of Stacey Poole who is now a regular presenter on Meridian News https://twitter.com/staceypooleitv?lang=en . She did such a good job before; why did she stop?

 

Even if you don't agree with a lot of Dr Byron Hydes theories, this article is another sad example

"
Amy Brown was now home again and it was only then the parents saw the incorrect history and
physical the consultants had done in the two hospital centres. They were understandably upset. So, on the 25th of April 2014, approximately four months after Amy first fell ill, Amy’s dad called the
hospital doctor regarding Amy’s report to complain of the poor treatment and incorrect history. Amy’s father had reason to be angry, but it appeared the doctor then became even angrier. He wasn't going to take any of this guff. Exactly five days later after the father’s phone call, the doctor retaliated by issuing a Section 47 on the 30th of April 2014. Retaliated is a harsh word, but I believe there is no other suitable word to describe the doctor’s reaction."

"
The social welfare officer came to the family’s house, examined Amy, spoke to her and her parents,
and must have decided it was the doctors who were mad and not Amy. So social services did the right thing and left Amy in the loving care of her parents,.."

"
Unfortunately, inappropriate sectioning of a child has another very dramatic effect on all such families
in England. The families become rightfully frightened of their children’s welfare and tend to avoid all
physicians. I assume the doctors are happy since they don't hear from this family any more and they
have now totally forgotten the patient."

"
Amy’s illness might be viewed as a typical and dangerous case of child neglect, not by the parents, but by the British medical community that was supposed to serve her best interests and the best interests of all children and adults in the United Kingdom."

 

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.