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

Discussion in 'General ME/CFS News' started by Andy, Mar 19, 2019.

  1. Andy

    Andy Committee Member & Outreach

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    https://medium.com/@lcelliott2/m-e-patients-and-the-researchers-that-silence-them-c2b81111ee0
     
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  2. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    @Andy

    Could you tell me how to access this article? It won't open.
    Thanks.
     
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  3. Andy

    Andy Committee Member & Outreach

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    Either copy and paste the link from the code box, or click on the white text in the image.
     
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  4. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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  5. Roy S

    Roy S Senior Member (Voting Rights)

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    good article
     
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  6. Barry

    Barry Senior Member (Voting Rights)

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    Very. Minor error with "Next year, NICE will launch an official review of the current guidelines for the treatment of M.E.", being it has already started, but a good counter for people who might otherwise get taken in by the recent rubbish.
     
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  7. Esther12

    Esther12 Senior Member (Voting Rights)

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    Why do you use the code box? Is it to stop it turning into a link? But why? Ta.
     
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  8. Andy

    Andy Committee Member & Outreach

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    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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  9. ladycatlover

    ladycatlover Moderator Staff Member

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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.
     
  10. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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  11. ladycatlover

    ladycatlover Moderator Staff Member

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  12. Amy101

    Amy101 Established Member (Voting Rights)

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    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.
     
    Last edited: Mar 20, 2019
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  13. Subtropical Island

    Subtropical Island Senior Member (Voting Rights)

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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.
     
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  14. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    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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  15. Amy101

    Amy101 Established Member (Voting Rights)

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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
     
  16. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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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.
     
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  17. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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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.
     
  18. Esther12

    Esther12 Senior Member (Voting Rights)

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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?
     
  19. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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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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  20. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    I think that reasons around suicide would be in a narrative summary, rather than the death certificate itself, though? Or are they descriptive like that?
     
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