M.E. Patients and the Researchers that Silence Them by Laura Elliott

Andy

Andy

Senior Member (Voting rights)
A lot of things have been written recently about patients living with Myalgic Encephalomyelitis (M.E.), often erroneously known as Chronic Fatigue Syndrome. Last week, Reuters published a long-form piece focused on psychiatrists working in the field, who claimed online activists were silencing their work.

Reuters quotes Professor Michael Sharpe, one of the authors of the controversial PACE trial, which was this year debated in Parliament, and is responsible for the current NICE guidelines that recommend Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) to patients.

“It’s just too toxic [a field],” he says, and Reuters adds their own context to the conversation, writing: ‘For many scientists, [this is] a new normal: From climate change to vaccines, activism and science are fighting it out online.’
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Code: 
https://medium.com/@lcelliott2/m-e-patients-and-the-researchers-that-silence-them-c2b81111ee0
 
the sad case of Merryn Crofts, who at 21-years-old, last year became the second person in the UK to have M.E. listed on her death certificate.
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This is untrue. She is the third person in the UK to have ME listed on her death certificate. The first was Annabel Senior. Whose name has never been mentioned in advocacy posts. It really makes me cross the way she has been ignored.
 
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 cause of death as listed on the death certificate is heart failure. ME is not mentioned on the certificate. It is mentioned on the coroner’s report notes which is an informal document which they use to help write the death certificate but has no official meaning as it is purely note form unfortunately @ladycatlover

Her husband apparently acknowledged this later on and told close friends that he had been misled by the coroner’s report (the informal note document) and what that stated.
 
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Andy said:
Exactly that. Why is because some members will have Javascript disabled, or some other reason, which will often stop the converted links from showing at all.
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Unfortunately copy-paste on S4ME is too hard for me. (Highlighting just the bit I want incredibly fiddly.) Some people can’t see if you do, some people miss the article with no link.
 
This article contradicts that oft-quoted number, stating 88 people between 2001 and 2016 in England and Wales: https://me-pedia.org/wiki/Causes_of_death#Number_of_deaths_due_to_ME.2FCFS

Their reference is here: https://www.ons.gov.uk/peoplepopula...isdeathsregisteredinenglandandwales2001to2016

From which I quote:
This table presents the number of deaths that mentioned postviral fatigue syndrome (benign myalgic encephalomyelitis) on the death certificate, either as the underlying cause of death or as a contributory factor.
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adambeyoncelowe said:
This article contradicts that oft-quoted number, stating 88 people between 2001 and 2016 in England and Wales: https://me-pedia.org/wiki/Causes_of_death#Number_of_deaths_due_to_ME.2FCFS

Their reference is here: https://www.ons.gov.uk/peoplepopula...isdeathsregisteredinenglandandwales2001to2016

From which I quote:
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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
 
Amy101 said:
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
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It says 'either as the underlying cause of death or as a contributory factor'.

The spreadsheet repeats and expands upon this: '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.'

I think that's sufficient, in most cases, to count as 'cause of death', even if it's only a partial cause. I get that this is an emotive issue, but I'm inclined to agree with the ONS over other sources.
 
adambeyoncelowe said:
I think that's sufficient, in most cases, to count as 'cause of death', even if it's only a partial cause. I get that this is an emotive issue, but I'm inclined to agree with the ONS over other sources.
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I suspect these figures are not that helpful. Traditionally 'cause of death' has often been filled in as the acute process immediately leading to death. So a patient with immunodeficiency associated with leukaemia might be allocated a cause of death of septicaemia, with leukaemia as contributing cause.

If people are interested in cases where ME seems to be the critical factor leading to death then death certificates are unlikely to be a reliable source. Exactly the same issues relate to rheumatoid arthritis, which is associated with shorter life expectancy for a variety of reasons.
 
adambeyoncelowe said:
It says 'either as the underlying cause of death or as a contributory factor'.

The spreadsheet repeats and expands upon this: '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.'

I think that's sufficient, in most cases, to count as 'cause of death', even if it's only a partial cause. I get that this is an emotive issue, but I'm inclined to agree with the ONS over other sources.
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Contributory factor could end up being applied quite variably and widely. eg if someone killed themselves could chronic ill health be a contributor factor?
 
Jonathan Edwards said:
I suspect these figures are not that helpful. Traditionally 'cause of death' has often been filled in as the acute process immediately leading to death. So a patient with immunodeficiency associated with leukaemia might be allocated a cause of death of septicaemia, with leukaemia as contributing cause.

If people are interested in cases where ME seems to be the critical factor leading to death then death certificates are unlikely to be a reliable source. Exactly the same issues relate to rheumatoid arthritis, which is associated with shorter life expectancy for a variety of reasons.
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Oh, I absolutely agree that they're not reliable. I just meant that it's not really accurate to say only two people have had ME listed on their death certificate as a cause of death. Though you're right; the numbers are pretty meaningless on their own.
 
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