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As you can imagine, getting a coroner to commit to putting ME is official cause of death is incredibly difficult. There are probably many listing it as contributory factor or additional factor but for them to place it as Official is incredibly rare, and unfortunately, it is this that will change...

Ok so official cause of death is the most important aspect on a death certificate. The causes of death are listed numerically. So, number 1 is the official cause of death, but number 1 can be 1a, 1b, 1c etc. So it would read 1a ..... is caused by 1b ..... which is caused by 1c. 1c is the...

Doctors in general do not write the certificate. With ME it goes to inquest because of the nature of such cases and then it’s down to a coroner

There’s a huge difference between contributory and official when applied to a death certificate. To say there isn’t is quite ignorant. I’m not repeating this anymore. Me and my family have said and said this and some people just will not understand. It’s actually harmful to those of us who have...

Which is different to what the person above means as they are referring to official cause of death being listed as ME on the death certificate. It is important to distinguish between the stats and actually being listed as official COD as this is where the confusion lies

It is true that Merryn is the second. Our family researched this extensively, we have had it confirmed with ME charities who have worked with us and journalists have also followed up on it before putting it in print (they cannot print something like this incorrectly). Annabel Senior’s Official...

CAMHS replied to my email (though they didn’t actually fully address much of what I said so I have the feeling they received numerous emails and sent out a generic reply) and this is their reply: Good Morning, Thank you for your feedback and for raising your concerns. We can confirm that the...

As Merryn’s sister, I’ve emailed them and sent it with links to information about her inquest and showing she has ME as official cause of death. It’s absolutely appalling that this is happening across the country. So utterly wrong

Hi I think i need to add this; me and my mum have had to beg MEA to share things about Merryn if we had done something (one media piece was our BBC Radio 5 Live interview, they didn’t put anything on about it till way after even though it had been arranged by their PR person) but then they go...

Thank you Barry, it sounds like you have a good MP who will hopefully try to do all he can to help. It is absolutely fine to use Merryn’s picture, and any which are used within the media articles about her

That makes sense, I’d not even thought of that - honestly, useless with technology! Thank you very much

Thank you everyone for your very lovely comments. Barry, this is one of the reasons why I’ve shared it here as it lists the symptoms she found so most difficult and hopefully that will go some way to showing people outside the ME community it is so much more than fatigue. Feel free to use this...

Hi, I apologise if this is the wrong area to post this but this is our last formal statement as a family. I’m unsure how to get it to come up on here so I have included a link to the Facebook post we have written. I’m a bit useless with technology so I do apologise! Many thanks and sending...

I’ve left a comment on there as have others. Hopefully the person who wrote it will read them, and even if he chooses not to listen or believe what people have said, at least the comments are there for the public to see. It’s just ridiculous that in this day and age there is still so much ignorance!

Thank you @Sly Saint and @NelliePledge A comment on the link to the article itself states the person who wrote it is actually a GP. If that’s the case, it just further consolidates how awful the treatment pwme receive from many within the medical community is. Me and my mum are sending you...

We had no idea of this article until it was sent to us by someone. We hope everyone knows we had nothing to do with such a poor piece of journalism! Xxx

We had no idea of this article until someone sent it us but we are very unhappy they’ve put Merryn in it and then proceeded to write what they did. We hope the community knows we had nothing to do with such a poor article xxx

And if referring to the email, my apologies I thought you meant the interview, then this was an email that was forwarded to us by MEA that was sent to them from him. It appears everyone is slightly confused by today’s interview in what he stated. I hope one day he will be able to explain further...

I understand your point Nellie but this is quite a serious thing to say on radio or within the media but then not elaborate on further, especially coming from someone who is being spoken to because of the position they hold within the community. If he did have brain fog then I hope he’s taking...

Update: Well, I have to admit, I’m rather confused by the response given by Dr. Shepherd. He says he doesn’t want to give it any more publicity at the moment. From how he’s worded things, it appears unclear if it is very recent or not. He does not state whether an inquest has taken place etc, or...