Merryn Crofts - media and inquest

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.
 
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Sly Saint said:
I'm not on FB but gather Merryn Crofts family have expressed some concerns on AfME FB page (?)
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“I am Merryn’s sister. Considering Action For ME have not responded to my message, I want to make this very clear. We saw this earlier today. Action For ME have never had anything to do with us or with Merryn. We have never communicated with them. Nor (in response to some of the comments worryingly in this thread) do we support anything to do with the Lightning Process, which quite frankly, is utterly appalling and exceptionally dangerous for the ME community. Not to mention highly unethical. For Action For ME to be speaking to journalists about her story, as they have stated above, I am unsure why this is as they never met or corresponded with her, or us as a family.

This is the message I sent earlier which they have failed to reply to:
Hi,

I’ve just seen your status about Merryn Crofts. I’m her sister and thank you so much for sharing one of the articles that has circulated about her. We are quite blown away by the response her story has had which can only be a good thing for ME!

However, we was just wondering as to what you meant where it states that Action for ME have been speaking with journalists regarding raising awareness of her story. We are just unsure what you mean by this as we have never had any communication with yourselves about Merryn, and Merryn never had any personal communication with yourselves, so we are unsure of how you are aware of her full story?

Many thanks,
Amy Williams”
 
Barry said:
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.
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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:



for those on twitter it was recently tweeted


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?
 
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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.”
 
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