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

This thread has been split in order to create an In Memory thread for Merryn.

To leave tributes to Merryn please go to:
https://www.s4me.info/threads/in-memory-of-merryn-croft.3302/

This thread remains here to discuss media coverage




Bed-bound and in unimaginable pain, watching my daughter waste away and die from ME was torture

A mum has told of her ‘torture’ at watching her beautiful daughter waste away as she battled a disease some people refuse to believe exists.
Merryn Crofts died on May 23 last year, 10 days after her 21st birthday.
She weighed less than six stone and had spent the last three years of her life totally bed-bound, in almost unimaginable pain.

Merryn had severe myalgic encephalomyelitis - or ME - a neurological illness which affects up to 17 million people worldwide, according to some estimates.
But many think the condition is not real, even within the medical profession.

Now, Merryn’s family have taken the brave decision to speak about her life and death in a bid to raise awareness of the crippling disease.

 

The same article has appeared in the Mirror :

https://www.mirror.co.uk/news/uk-news/young-woman-dies-after-illness-12288945

There have been five comments on the article (so far).

Rest In Peace Merryn.

 

MD Henrik Vogt has his own explanation, as usual.

 

Unimaginable hell for this young woman and her family, hard not to be in tears reading her story.

I don't engage with Norwegian doctor Henrik, I did a couple of times when he first day defended PACE, but I think he is simply incapable of self-awareness and clearly doesn't mind how much he insults families of pwME with his abject nonsense. He seems rather obsessed with psychologising ME. Bizarre.

 

I encourage Henrik Vogt to go right on letting the world know of his views on these matters, in as public and undeniable a manner as possible.

I can think of no better way for him to ultimately and decisively destroy his own credibility and reputation.

There are few people I can find less forgiveness for in this appalling chapter of medicine than this third-rate sociopathic vulture.

He is nothing more than a stark lesson in how little a formal education can be worth in the wrong brain.

 

Just waiting for his next tweet where he comments on a story of a girl being raped by ''It is important to underscore that the girl could have worn more clothes''

This guy is clearly a sociopath.

 

Clearly the man does not understand ME/CFS. What a terrible thing to say to PwME.

 

apparently, according to Vogt, it's not only the ME activists who are 'stupid'




his answer to this


eta: quick skim thro his tweets. He really doesn't like us does he! Also he seems to hate biomedical research/testing for just about everything; calls it quack-science.

 

'Computer voiced' version of the article on Youtube. (doesn't handle saying M.E. very well); possibly of use to those who find it hard to read the written article.

 

I know it's not going to happen but I wish people would just ignore Vogt. He's digging his own hole, leave him to it. I worry that the more attention is drawn to him the more likely it is that Merryn's family and friends will be hurt by his lack of empathy. He may believe everything he says is true, but he doesn't have to say it in connection to an individual who has died.

 

I just found a short version of this story on a New Zealand news site :

http://www.newshub.co.nz/home/healt...-death-after-rare-disease-takes-her-life.html

It mentions that an inquest will be held in May.

 

I'm rather puzzled that it has taken so long. She died last May.

 

I hadn't realised that Merryn's death occurred so long ago. Perhaps it is appearing in the papers now because the parents have gone public?

 

News story shared by LADbible - with over 2 million followers on twitter

 

article in stonebird:
http://stonebird.co.uk/merryn/index.htm

the sun:
https://www.thesun.co.uk/news/5951733/merryn-croft-me-death-inquest-rochdale-illness/

birmingham mail:
https://www.birminghammail.co.uk/news/midlands-news/tragic-21-year-old-dies-14483546

News hub NZ....'rare disease' again(?)
http://www.newshub.co.nz/home/healt...-death-after-rare-disease-takes-her-life.html

eta: sorry just saw newshub already posted

 

It's an automatic translation site, there are more and more of these. They aren't even edited, it's pretty bad, I don't know who reads them. (eg. of bad translation: "Elle pesait moins de six kilos", she weighted less than 6 kilos, original version: She weighed less than six stone...).

edit: and half of the time, ME is translated as "moi" (me, I).

 

http://www.dailymail.co.uk/news/art...x-stone-wasting-away-ME.html?login#newcomment

They haVent published my two comments and so far just have two which seems unlikely

 

My ME-hapless MP just sent me one of his aren't-I-wonderful newsletters, so I replied with a link to this article, along with the headline, byline and photo, plus a short message from me how I'm looking forward to seeing him start fighting for PwME, and not just regurgitate the party line. Lost cause no doubt, but maybe someone else in his office might read it who cares.

 

I think it's true that people with cancer sometimes die of starvation? What's his point?