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

Thank you Esther12. You are quite correct and those death certificates do not state ME as official cause of death unfortunately Adam. And to make out as a family we were ignorant and in doing so downplaying other deaths is, quite frankly, insulting. As it is to all the ME charities consulted and the press who have also researched this with the help of ME charities. As a family, we have researched this because we have absolutely had to. We have personally been impacted by this and have had to be careful in what we say to ensure both truth and that it is legally correct. We have seen all of this information before and it simply is not the same unfortunately. I’m not going to comment any further. It is disrespectful to both us as a family to imply that we do not know what we are talking about with this, or to be bringing in families who should have had ME as official cause of death for their loved one but didn’t, as we know many have found people saying they had very very distressing as it brings up painful memories.

One thing which has become exceptionally apparent is that those people stating these false facts is that they have not actually spoken with such families or know them personally. Such families have reached out to us to state that what we have said is correct and the backlash received from some regarding what we’ve stated is wrong.

I appreciate what you are saying Adam, but we will have to agree to disagree. Also, the point regarding the press is untrue. No press outlet would dare print such a headline without being fully aware of the facts.
 
Also, just to cover this once again (when quite frankly I shouldn’t be having to do so as we have explained this as a family so many times on our page, in comments and now on here), we have researched this extensively. This includes having already looked at the ONS etc. What has circulated on ME pages (which we have been sent numerous times on our MErryn’s Legacy page) has never been any evidence to show official cause of death as ME for others outside of Merryn and Sophia. How a death certificate is written is very specific and hard to explain over text like this, but it’s all in the format, and only Merryn and Sophia have it.

In addition, I’d just like to add, we so wanted to find more evidence on death certificates as this would have made it easier to get it on Merryn’s but there just is no other with it other than Sophia’s in the U.K. We had to fight and spent a year worrying and thinking we would never get the result for a Merryn due to it only being on Sophia’s. We spent just short of a year preparing for that inquest and doing all we could to research it. So please do not accuse us of not knowing or being aware, as we are, and more aware than hopefully anyone else commenting will ever have to personally be.
 
Amy101 said:
Also, just to cover this once again (when quite frankly I shouldn’t be having to do so as we have explained this as a family so many times on our page, in comments and now on here), we have researched this extensively. This includes having already looked at the ONS etc. What has circulated on ME pages (which we have been sent numerous times on our MErryn’s Legacy page) has never been any evidence to show official cause of death as ME for others outside of Merryn and Sophia. How a death certificate is written is very specific and hard to explain over text like this, but it’s all in the format, and only Merryn and Sophia have it.

In addition, I’d just like to add, we so wanted to find more evidence on death certificates as this would have made it easier to get it on Merryn’s but there just is no other with it other than Sophia’s in the U.K. We had to fight and spent a year worrying and thinking we would never get the result for a Merryn due to it only being on Sophia’s. We spent just short of a year preparing for that inquest and doing all we could to research it. So please do not accuse us of not knowing or being aware, as we are, and more aware than hopefully anyone else commenting will ever have to personally be.
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Thanks again, Amy. I appreciate that this is a difficult topic, but I'm not criticising anyone here. It seems we're talking cross-purposes. You mean 'people who died primarily from ME', but the articles state 'people who had ME on their death certificates' or similar. The latter is obviously less accurate than the former, so it's a media error not yours.

You'll note I specifically referred in my first post to death certificates that mention ME, not those that list ME as it's primary cause. We can't, of course, know if ME was the primary cause in those cases without knowing who they are. That's what I initially said, too.

I'm sorry if you feel it's an attack; that's not my intention. As you say, we will just have to agree to disagree.
 
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Diluted-biscuit said:
Welcome to the forum Amy, I’m very sorry for your loss and really appreciate your families hard work on all of this.
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I should also say that I second this! Merryn's story has been instrumental in opening eyes and raising this issue for debate. Talking about it constantly must be very painful, but I think we all appreciate your bravery in coming here and speaking to us, as you have with the press and others.
 
Fair enough Adam, I have been talking in respect of official cause of death so it seems we have been talking about separate things. We know there are others who have mentions of ME in their death certificates which aren’t unfortunately the official cause which is very different as you know and which is what is needed on the death certificate to make it class as a death solely due to the condition which is why Merryn and Sophia’s are the only two. It’s also why they are both landmark cases in that these are the ones which will hopefully set a precedent for others to be able to also have official cause of death as ME and that they will help medical practitioners to see that ME does kill as without official cause of death stating ME, they can continue to ignore that fact as wrong as that is (having looked into the others, many absolutely should have it as official cause of death and it is so wrong they didn’t. Please also understand the reason as to why I am writing so specifically as so many within the community have not understood this and we have had some rather vicious comments directed at us as a family from within the community due to this lack of understanding). Many people also have mentions in coroners report though this again, is entirely different and informal. So yes, I understand how the headline may be misleading in that sense and appreciate your point. We can’t control everything they put out but we do consistently tell all media sources this point.

I don’t want anyone to think we have downplayed other deaths though, that is absolutely untrue. We consistently mention that many others should have it as official cause of death and have wrongly not had it because of lack of medical understanding etc, we only ever discuss it in that way as that is what Merryn has and we only comment on Merryn’s case as that is what the media want to know as they see it as a human interest story. Please note that in every form of media we have done, they leave out a lot regarding what we say that we personally would like in or slightly get things wrong ie order, her symptoms are never properly covered in the way we would like to show the full severity etc. Overall, I think the editing on the radio interview (which accompanies this article, we did not realise there would also be an article at the time) was very good and got a lot across though there are points where we would have liked it clearer to the audience that Merryn is the second in the UK with official cause of death as ME. I hope this clears up the fact we are not downplaying deaths and that I appreciate your comment and understand your point.
 
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@Amy101 I have even more gratitude and admiration for you as a family now having just read this thread and realising how hard it must have been to get the result that you did and I also understand a bit more about why this is so significant and important. I knew that it must have been (and continue to be) an absolutely awful time for you suffering such a huge and devastating loss but I hadn't realised that it was also such a challenge legally and that you had to fight so hard to have ME on Merryn's death certificate. I think it is amazing that you managed to do this for Merryn and for others with ME. (And obviously also appreciate that there have been other families who have been unable to get this result and my heart goes out to them.)

I have felt a huge amount of gratitude to you and your mother as I've seen all of the news stories coming out as I feel that you sharing your story has shed so much light on the condition and been so helpful to the rest of us in that way. I hadn't considered what an impact the fact of having ME on Merryn's death certificate has in setting a precedent and making it easier for other families in the future (lets hope there are not many) to do the same. That seems like a huge achievement which will have a profound and continuing impact. (Although one that I wish never had to be made).

I'm sorry that you've received criticism from some. I think the coverage has been very clear and that you have clearly put a lot of effort into making it so. Thank you. And thank you for taking the time to come on here.
 
Amy101 said:
Fair enough Adam, I have been talking in respect of official cause of death so it seems we have been talking about separate things. We know there are others who have mentions of ME in their death certificates which aren’t unfortunately the official cause which is very different as you know and which is what is needed on the death certificate to make it class as a death solely due to the condition which is why Merryn and Sophia’s are the only two. It’s also why they are both landmark cases in that these are the ones which will hopefully set a precedent for others to be able to also have official cause of death as ME and that they will help medical practitioners to see that ME does kill as without official cause of death stating ME, they can continue to ignore that fact as wrong as that is (having looked into the others, many absolutely should have it as official cause of death and it is so wrong they didn’t. Please also understand the reason as to why I am writing so specifically as so many within the community have not understood this and we have had some rather vicious comments directed at us as a family from within the community due to this lack of understanding). Many people also have mentions in coroners report though this again, is entirely different and informal. So yes, I understand how the headline may be misleading in that sense and appreciate your point. We can’t control everything they put out but we do consistently tell all media sources this point.

I don’t want anyone to think we have downplayed other deaths though, that is absolutely untrue. We consistently mention that many others should have it as official cause of death and have wrongly not had it because of lack of medical understanding etc, we only ever discuss it in that way as that is what Merryn has and we only comment on Merryn’s case as that is what the media want to know as they see it as a human interest story. Please note that in every form of media we have done, they leave out a lot regarding what we say that we personally would like in or slightly get things wrong ie order, her symptoms are never properly covered in the way we would like to show the full severity etc. Overall, I think the editing on the radio interview (which accompanies this article, we did not realise there would also be an article at the time) was very good and got a lot across though there are points where we would have liked it clearer to the audience that Merryn is the second in the UK with official cause of death as ME. I hope this clears up the fact we are not downplaying deaths and that I appreciate your comment and understand your point.
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Of course! And I didn't mean to imply that it's you downplaying deaths, or your family.

I can understand that there have been problems on social media. I don't think people always intend to cause upset, but often those same people are hurting themselves, which is why their responses can be rash and/or hurtful. Either way, I'm very sorry you've gone through that.

I think everyone here knows what life is like with ME, and we all probably know someone who has died from it. I think it's more the case that the media doesn't take it seriously, and it's they who (with a few exceptions) haven't truly covered the impact of this illness, rather than any of us here.

Doctors also aren't really aware of these cases, either, and that's perhaps even more important (although the media undoubtedly plays a role in public attitudes of all kinds). Politicians seem to be getting the message, but it's important that more of them know these details too.

When some of us were writing the latest response to the NICE draft scope, one of the issues that we felt needed to be covered is that ME can lead to death. The guidelines currently don't cover that.

There's currently a very dismissive attitude that ME usually resolves itself, or is trivial, but if doctors know it can cause death they might be more willing to a) work to avoid it; and b) include it in official figures.

I was surprised to see some very BPS-style doctors commenting very positively about Merryn's case. That may indicate a change of attitudes where we need it.
 
adambeyoncelowe said:
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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Thank you - I can view it now.
 
Tia said:
@Amy101 I have even more gratitude and admiration for you as a family now having just read this thread and realising how hard it must have been to get the result that you did and I also understand a bit more about why this is so significant and important. I knew that it must have been (and continue to be) an absolutely awful time for you suffering such a huge and devastating loss but I hadn't realised that it was also such a challenge legally and that you had to fight so hard to have ME on Merryn's death certificate. I think it is amazing that you managed to do this for Merryn and for others with ME. (And obviously also appreciate that there have been other families who have been unable to get this result and my heart goes out to them.)

I have felt a huge amount of gratitude to you and your mother as I've seen all of the news stories coming out as I feel that you sharing your story has shed so much light on the condition and been so helpful to the rest of us in that way. I hadn't considered what an impact the fact of having ME on Merryn's death certificate has in setting a precedent and making it easier for other families in the future (lets hope there are not many) to do the same. That seems like a huge achievement which will have a profound and continuing impact. (Although one that I wish never had to be made).

I'm sorry that you've received criticism from some. I think the coverage has been very clear and that you have clearly put a lot of effort into making it so. Thank you. And thank you for taking the time to come on here.
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Thank you so much for your lovely comment Tia, it is so much appreciated by myself and all our family ❤️
 
Amy101 said:
I have been talking in respect of official cause of death so it seems we have been talking about separate things. We know there are others who have mentions of ME in their death certificates which aren’t unfortunately the official cause which is very different as you know and which is what is needed on the death certificate to make it class as a death solely due to the condition which is why Merryn and Sophia’s are the only two
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This is a subtlety that I had not picked up on until reading this, although once it is pointed out it's then pretty obvious (and thereon no longer a subtlety). But it's easy to miss things sometimes until someone in the know points it out. Many thanks.
 
Amy101 said:
Merryn and Sophia’s are the only two. It’s also why they are both landmark cases in that these are the ones which will hopefully set a precedent for others to be able to also have official cause of death as ME and that they will help medical practitioners to see that ME does kill as without official cause of death stating ME, they can continue to ignore that fact as wrong as that is (having looked into the others, many absolutely should have it as official cause of death and it is so wrong they didn’t.
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I add my thanks to you and your family for all that you have done, and also to Sophias family for what they went through.

IMO What you have written ( above quote) is the 'take away' message.
 
Slightly off topic but in terms of cause of death etc Jason did a ME mortality study where they did a survey based on asking patient families.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5218818/

The findings suggest patients in this sample are at a significantly increased risk of earlier all-cause (M = 55.9 years) and cardiovascular-related (M = 58.8 years) mortality, and they had a directionally lower mean age of death for suicide (M = 41.3 years) and cancer (M =66.3 years) compared to the overall U.S. population [M = 73.5 (all-cause), 77.7 (cardiovascular), 47.4 (suicide), and 71.1 (cancer) years of age].
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http://www.thenorthernecho.co.uk/news/16401152.new-hope-for-sufferers-of-myalgic-encephalomyelitis/ starts accurately, despite the weird choice of headline.
New hope for sufferers of ME

RECENTLY a 21-year-old woman became only the second person in the UK to have a diagnosis of ME recorded as the cause of death. Family describe Merryn Crofts from Rochdale, who died in May 2017, as a “live wire” until she contracted the illness at 15, going from a bubbly young girl to a wheelchair in six months, and confined to her home within a year.
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Descends into fantasy
Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) are approved treatments and have been found to be very effective.

Both of these should be offered by professionals with a specific understanding of ME.
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and then recovers somewhat
Researchers in America have identified that people with ME may not metabolise nutrients as effectively as those without ME, and this may be a cause of or contribute to their symptoms.

A recently developed blood test was shown to be 84 per cent accurate when 50 patients with ME were compared with control individuals without the disease.

Many people report a degree of relief once they have a diagnosis, as it allows them to better understand their symptoms.
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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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Oh dear you poor thing........ my one is no better Tory doctor Desperate Dan..... also once a minister who stated untruths about children and ME and failed to agree to correct them. Sandy Martin, MP for Ipswich, I know, but he is not my MP BUT, he has signed the PACE stuff and attended the recent Westminster Hall Caroline M debate.
 
Amy, my condolences and my sympathy for you and the family having to deal with all this stress and "stuff' at a time where you should have time and space for grieving.

You are all very brave taking on both state, Inquest (now funded by County Councils ) who squeeze till the pips are dry, and worse, interfere, that's without the expense and costs dealing with legal teams etc.... I was helped by AVMA Association of Victims of Medical Accidents, and recently by the charity Inquest. AVMA Have driven the Law of Candour through( 2015) I was also advised and helped by Malcom Hooper and by APRIL Adverse Psychiatric Reactions Information Network who made the yellow card system open to patients' reporting, not just doctors.

A final thought as someone who has personally dealt with and had to drive matters for 2 personal family Inquests, and another- still ongoing.....I know the time, effort and stress involved. You all need a medal!

My extensive experience for what it's worth.....

  • My dad's - due to a medical "accident"/ Medical Negligence, at Papworth in 1989- the Inquest, delayed for a year due to doctor implicated doing a runner to Australia...............
  • My dear mother in law in 2010- who died following an "accident'- a fall whilst in residential home triggering a brain hemorrhage.
  • and recent close involvement with another friends relative, who has been badly let down by a Coroner - who's mum died in suspicious circumstances in 2012 and it is still not finally put to rest due to cover ups etc......

My dear mother in law in 2010
There were "extenuating circumstances" in her case, ie. she was "incapacitated" and placed in the home due to cognitive/physical and other mental health "symptoms". This case has parallels with ME/CFS cases, ......."official" or not. ........

These "extenuating circumstances", we suspected were in part due to inappropriate medical management for a heart block event, medication adverse reactions, etc.

Just before her fall, with GP support against hospital consultants, removal of the said medicines (including statins, laprosonic acid, high dose Didronel and other poisons causing confusion and hallucinations, psychotic events, lack of fine motor control )- she seemed to be recovering in many ways especially her fine motor control- writing, knitting etc....

Due to these circumstances, the coroners' investigator was so concerned that lessons should be learnt, he took a year to properly check these issues out. At the end of the day, the coroner did not what to know this and refused to place these matters as contributing to her death. Though in many views, they clearly were contributory.......

However, at least the investigator tried, even if we felt let down by the coroner and the system.........
Incidentally, the investigator was so wonderfully understanding, having had ME, he disclosed to me, and having a close relative die from it, Lynn Gilderdale..........I was so grateful to him.

Families are at the mercy of the Coroner's service and are often being let down, as this service has been impacted by politics, funding issues and interference - there are more complaints this year against coroners than ever! I know, having had to contact the Justice Office who are running from 15 day response to 3 months or more......and they have balked at acting at all...

So Amy, let this particular debate go over your head and have some peace please. I do hope your need for space and time will now be respected.
 
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