BBC: 'Vindication' for woman who wanted ME on death certificate

E

Eagles

Senior Member (Voting Rights)
BBC: 'Vindication' for woman who wanted ME on death certificate

https://www.bbc.co.uk/news/health-44969741

The family of only the second person in the UK to have ME recorded on their death certificate say they feel "vindicated" by the ruling.

Merryn Crofts from Rochdale died in May last year, 10 days after her 21st birthday.

Her mother Clare Norton told BBC Radio 5 live's Anna Foster that Merryn had started to doubt herself after being misdiagnosed by doctors.

She said hearing the coroner's verdict "meant everything".

"It's vindication for Merryn because it would have meant so much to her. She was scared of doctors and of telling people she had ME."…
 
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https://www.bbc.co.uk/news/health-44969741

Good article. If this is reported in the press, it presents a good opportunity to get letters published about associated ME issues – CBT/GET, PACE, lack of funding for biomedical research etc.

As a veteran newspaper letter writer my advice would be:
– Wait until article is published and reference it.
– Keep letter as short as possible (under 250 words if possible)
– Focus on one clear point
– Submit letter by email as soon as possible after the article is published (before 1pm if possible)
– Check the papers online from 6pm onwards to give yourself extra time to compose letter before it appears in the next day’s print edition.
– Make sure you include your full address and tel no (they very seldom phone these days).




Huge thanks to Merryn’s family for all the great work that have done.
 
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It's a good article.

A few niggles of mine:

1) I'm not sure about the headline: "'Vindication' for woman who wanted ME on her death certificate". I don't imagine she 'wanted' ME on her death certificate but that she wanted the truth on her death certificate. It wasn't just that she 'wanted' it but that it WAS the cause of death and so SHOULD have been there.

2) I wish they would say 'the second person to die as a result of ME' rather than 'the second person to have ME recorded on their death certificate.'

Other than that this is good and useful coverage. I also like that they name Sophia Mirza.

Much gratitude to the families of Merryn and Sophia for speaking out about ME.
 
Sly Saint said:
yes but why did they suddenly switch to CFS (?) as she was the first person to have M.E. on her death certificate.
"In 2006, the Brighton and Hove coroner ruled that 32-year-old Sophia Mirza died from renal failure as a result of CFS."
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Hi, I’m Amy (Merryn’s sister). The reason why they stated CFS regarding Sophia Mirza is because that is what is actually written as official cause of death on her death certificate, rather than the words ME. Her mother had to truly fight for any recognition but really wanted it to be noted as ME. Apparently, the coroner was deliberating which to put but chose CFS which is why the article states that. They can only write and say what is legally correct, I hope this helps clear things up. Thank you for all the kind comments and may we always remember Sophia, Merryn and all others who should have received the proper legal acknowledgement but sadly and wrongly didn’t ❤️
 
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Sincere thanks @Amy101 to you and your family, and so very sorry about Merryn. I've been keeping my MP posted about ME, and highlighted this story to him the other day, having previously brought his attention to an earlier story about Merryn. I clarified that whatever strategy any government may choose to adopt regarding people with ME, the ones that will never work - given modern social media and the determination of people fighting for what is right - would be hoping it will all go away, or trying to sweep everything under the carpet. I think it is crucial the government understands that. My MP is Matt Hancock, recently appointed Secretary of State for Health and Social Care.
 
Barry said:
Sincere thanks @Amy101 to you and your family, and so very sorry about Merryn. I've been keeping my MP posted about ME, and highlighted this story to him the other day, having previously brought his attention to an earlier story about Merryn. I clarified that whatever strategy any government may choose to adopt regarding people with ME, the ones that will never work - given modern social media and the determination of people fighting for what is right - would be hoping it will all go away, or trying to sweep everything under the carpet. I think it is crucial the government understands that. My MP is Matt Hancock, recently appointed Secretary of State for Health and Social Care.
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Hi Barry, I hope you are having a kind day and no need to thank us, we are happy to do all we can to help the ME community. I completely agree about how the government trying to hope it will all go away and be ignored is the worst strategy. Hopefully though, with the snowball effect of everything that’s happened in the past year ie Unrest, Merryn and the coroner’s ruling, the Parliamentary debate, and the work being done by David Tuller and Ron Davis to name but a few, this will become more and more apparent. If there’s anything me and my mum have learnt about the ME community is how strong and resilient all sufferers are, and how hard they’ll continue to fight even when so unwell. Hopefully, your MP with his position has the power to truly help further research and training regarding ME. Thank you for taking the time to ensure he has been kept up to date
 
Trish said:
Hi @Amy101 , welcome to the forum. I am so sorry for your loss of your sister. I listened to your interview on the radio with admiration for your and your mother's strength and gratitude for what you are doing for the ME community.
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Hi Trish, thank you. I’m so glad that what we said was ok, we always worry so much that what we say may come across wrong or not do Merryn, ME and ME sufferers justice. We sincerely hope it came across okay for everyone! Sending you all the gentlest of hugs from all of us ❤️
 
Didn't someone post a link to all reported death certificates with ME mentioned? It was higher than two. Was it on here or PR?

My suspicion is that these are just the two that made it into the papers, and we might discover many more if we know where to look. (However, we can't know whether ME was a 'primary' cause of death, or just a contributing factor, without seeing the death certificates anyway.)
 
adambeyoncelowe said:
Didn't someone post a link to all reported death certificates with ME mentioned? It was higher than two. Was it on here or PR?

My suspicion is that these are just the two that made it into the papers, and we might discover many more if we know where to look. (However, we can't know whether ME was a 'primary' cause of death, or just a contributing factor, without seeing the death certificates anyway.)
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We have researched this extensively as a family as we would never want to take away from other families if they have official cause of death as ME in the U.K. by saying Merryn is only the second to have it. Nobody else, other than Merryn and Sophia Mirza have it. This has, again, been researched extensively by ourselves and the multiple U.K. ME charities. Many people who say this is not the case do not understand the difference between it being stated as official cause of death on the death certificate (a legal document) and being mentioned in the coroner’s report which is informally stated by the coroner at the end of proceedings which covers many things, but all of what is stated in the report is not official cause of death. Again, only Merryn and Sophia have this. The media would not be able to report it legally this way otherwise, and the charities would be aware of others. It is absolutely nothing to do with the fact they was in the media and others haven’t been covered in this way. We also are aware that many families of loved ones who have lost people to ME but don’t have it on the death certificate are upset that people keep using their loved ones names to say they do, as this just reminds the families that they was unable to get the official cause of death that they should have done.

Also, if your point about knowing the primary cause of death is related to Merryn and Sophia, then yes. It is primary cause of death as ME on Merryn’s. I do not feel that we have to share her death certificate with the public itself for this, the ruling is stated on our page.

Like I mentioned before, we have researched this extensively, as have ME charities and the media before publishing such headlines. My family would never say it or allow it to be said if it wasn’t the case. I hope this makes sense.
 
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Trish said:
Thank you for clarifying this, @Amy101. No one is criticising your honesty or thoroughness in researching. Sometimes it's hard for us to tell whether the media have got it wrong. It's helpful that you have spelled out the situation so clearly for us.
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Thank you Trish. We have had to explain this before so we don’t take it as a criticism, we just don’t want people to be misled or to think that as a family, we would spread something like that if it wasn’t the case. Unfortunately, there is only Merryn and Sophia in the UK (though there should be many more!), but hopefully a precedent is being set for others who may sadly lose their lives from ME in the future to be able to have the correct acknowledgement on the death certificates
 
Amy101 said:
Thank you Trish. We have had to explain this before so we don’t take it as a criticism, we just don’t want people to be misled or to think that as a family, we would spread something like that if it wasn’t the case. Unfortunately, there is only Merryn and Sophia in the UK (though there should be many more!), but hopefully a precedent is being set for others who may sadly lose their lives from ME in the future to be able to have the correct acknowledgement on the death certificates
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It certainly wasn't a dig, @Amy101. However, I'm sorry to say that a number of deaths have included ME or CFS on the death certificates. See the thread here: https://www.s4me.info/threads/merry...-be-from-me-by-inquest.4202/page-2#post-73691. There were 11 in 2016 alone!

That doesn't detract from Sophia or Merryn's stories, which are very powerful in their own right, but it's not right to downplay the deaths of others, either (I know you weren't doing that; you just didn't know).

Of course, I suspect the true numbers are much higher than this, especially when you take all-cause mortality into account.

As for the media: they can pretty much publish what they like so long as it's not defamatory or a hate crime. It's not illegal to make a mistake. It's not even illegal to print a lie, though the regulators can fine them for it.

Also, if your point about knowing the primary cause of death is related to Merryn and Sophia, then yes. It is primary cause of death as ME on Merryn’s. I do not feel that we have to share her death certificate with the public itself for this, the ruling is stated on our page.
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No, that's not what I meant. I was talking about the numbers I'd seen (which I now remember are from the ONS). I'll quote from the document linked to above:

Cause of death was defined using the International Classification of Diseases, Tenth Revision (ICD 10) code G93.3 'Postviral fatigue syndrome' (Benign myalgic encephalomyelitis). Figures include deaths where this was either the underlying cause or was mentioned on the death certificate as a contributory factor.
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So the deaths can be either primarily due to ME or just have ME as a contributing factor. But we can't distinguish between the two from the numbers alone.
 
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I can't paste the table here, annoyingly, but it's 87 deaths listed from 2001-2016. That's 5.4 deaths a year, with the numbers taken from death certificates alone (not coroners' reports).

ETA: I got the file to attach in a different format. I hope it's useful.
 

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