The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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UK General Election: Template letter to parliamentary candidates

Discussion in 'General ME/CFS Discussion' started by charles shepherd, May 9, 2017.

  1. charles shepherd

    charles shepherd Senior Member

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    UK General Election: Template letter to parliamentary candidates

    The UK General Election takes place on Thursday June 8, and we know that people may want to contact their local parliamentary candidates to inform them about issues of key national concern to people with ME/CFS.

    You may also want to raise local issues – especially in relation to subjects such as social care and the general lack of care in the community, lack of medical education for local GPs and problems with hospital-based referral services for people with ME/CFS.

    The MEA has produced a basic letter that can be used as it is, or modified to meet your individual requirements.


    http://www.meassociation.org.uk/201...ing-the-general-election-campaign-9-may-2017/

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
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  2. AndyPR

    AndyPR Cookies for Tired Sam

    This is great, we need more things like this to assist patients in their advocacy efforts in this country. While I appreciate the need to keep it as brief as possible, I personally I feel that it needs some emphasis on the economic burden, pointing out that it's a false economy not to put more money into biomedical research. It might not matter so much to other parties, given they may have more compassion for suffering, but it would seem your typical Tory needs to be talked to in monetary terms for them to take notice.

    I have had the idea of taking the figure for the overall economic burden of patients for the country and then working it out for each constituency, enabling people to show their local MP the likely burden of the people they are representing. And I will do it, once I find that elusive amount of sufficient spare energy...
     
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  3. SamanthaJ

    SamanthaJ Senior Member

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    This is from the Labour manifesto:

    If you're writing to a Labour MP or candidate, might be worth adding a reference to this bit, and how it's relevant to ME.

    Edit: Not trying to start a political debate, just worth knowing what each party is promising when writing these letters.
     
    Last edited: May 16, 2017
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  4. charles shepherd

    charles shepherd Senior Member

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    Fair point

    Could add in this info if people want to:

    The scale and impact of ME/CFS on individuals and society is significant.
    Around
    250,0001 people in the UK have ME/CFS which is at least as disabling as multiple sclerosis and
    congestive heart failure.
    Many more people – carers, children and family members – are directly
    affected by the illness each year.
    The economic cost of ME/CFS was estimated at £6.4 billion3 per
    year in the UK in 2006, and this figure will certainly have increased since.

    Ref for economic cost to the country:
    Bibby J, Kershaw A. How much is M.E. costing the country? Report prepared by the Survey &
    Statistical Research Centre. Sheffield Hallam University, 2006.
    (not available on line)

    CS
     
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  5. AndyPR

    AndyPR Cookies for Tired Sam

    Thanks for the additional info @charles shepherd

    Can I ask what the thinking is behind the call to set up a new APPG on ME? Why would this be an improvement on the existing APPG?
     
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  6. charles shepherd

    charles shepherd Senior Member

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    Re the APPG on ME at Westminster:

    This is largely a procedural matter after a General Election

    All APPGs have to be reconstituted after an election, and in the case of ME/CFS this nearly always means that we are chasing round to find MPs and members of the House of Lords who are willing to be involved in the running of the group

    Retirements, loss of seats and deciding that one full term of parliament of close involvement is enough normally has an effect on what happens next……..
     
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  7. AndyPR

    AndyPR Cookies for Tired Sam

    Useful links to find the contact details for candidates;
    https://www.conservatives.com/
    http://www.labour.org.uk/people
    http://www.libdems.org.uk/candidates

    If those links don't offer the information on the candidate in your area, the next solution would be to internet search on your local constituency and the party you are trying to find e.g.. North West Hampshire Liberal Democrats. If you don't know your local constituency, simply use the search on the homepage of https://www.theyworkforyou.com/.

    Prevalence and economic cost.

    If you want to add in more individualised details on these two then this might be useful.

    Prevalence in a constituency - population in a constituency (Wikipedia normally will have a figure for this) multiplied by 0.004 e.g. North West Hampshire, in 2010, had an electorate of 77,020. Multiplied by 0.004 gives approx 300 adult patients.

    Economic costs to a constituency - population in a constituency multiplied by £25,600 e.g. North West Hampshire, patient population of 300, has an economic burden of £7,680,000 per year.
     
    Last edited: May 17, 2017
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  8. trishrhymes

    trishrhymes Senior Member

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    UK
  9. slysaint

    slysaint Senior Member

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    W. Sussex UK
    then there's always this one:D
    "The Loony party campaign is now in full swing with fifteen candidates declared so far"
    https://www.omrlp.com/


    Some Brexit Policies
    30th April 17
    • Health – Germany to pay for all treatment of German Measles, and Spain ditto for Spanish Flu.
    • France must give us back Brittany.
    • All Europeans to pay to use the English Channel, and all Creme Anglais to be made in Britain.

    sorry; I know this is a serious issue........just couldn't help it.

    eta:
    "2017 General Election Manifesto

    We will stand on a platform of free woollen hats for all, so we can pull the wool over peoples eyes.."
     
    Last edited: May 17, 2017
  10. AndyPR

    AndyPR Cookies for Tired Sam

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  11. AndyPR

    AndyPR Cookies for Tired Sam

    In case anybody is interested, here is my modified version of the MEA's draft letter to MPs.
     
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  12. dangermouse

    dangermouse Senior Member

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    Thanks :thumbsup:
     
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  13. AndyPR

    AndyPR Cookies for Tired Sam

    No problems :)

    If anybody wants to use this but needs to adapt the constituency prevalence and economic burden figures then all I did was to use Wikipedia to look up the constituency to find out the population figure (it actually gives the electorate figure but I thought that would be good enough).
    For prevalence, multiply the population by 0.004 (e.g. 77,020 x 0.004 = 308 PwME)
    For economic costs, multiply constituency figure by £25,600 (e.g. 308 x £25,600 = £7,884,800 per year)

    Or if brain fog doesn't allow you to do this, post your constituency (or even just post code) in this thread and I'll work it out.
     
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  14. AndyPR

    AndyPR Cookies for Tired Sam

    Well, for what it's worth I've got a response from the candidate most likely to be elected
    Response.jpg
    @charles shepherd , having as much notice as is possible about the APPG meetings will make following this up easier, thanks in advance. :)
     
  15. charles shepherd

    charles shepherd Senior Member

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    Thanks for posting this reply

    I will be in touch with Kit Malthouse if elected on June 8th!

    CS
     
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  16. Cinders66

    Cinders66 Senior Member

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    But fundamentally the MEA and AFME do not think that the MRC should be under pressure to allocate us more money or certainly are not asking members to apply that pressure in any form of lobbying so I don't see what difference individuals writing to MPs on that calling will make. Whenever I've raised the lack of MRC etc doing more to put in funding etc I'm told by MEA that that's not what they normally do (so accepting no ring-fencing) and that the issue is therefore lack of voluntary research interest, something an MP will see as beyond them, unless name and definition were changed. I've written to both to my MP and to DoH previously, including on false economics and economic burden and got nowhere except the standard MRC has had CFS as a highlighted area for several years and welcomes research applications etc. I've also written about lack of medical services for ME and the old lines get trotted out.

    its worth raising our matters with prospective MPs , especially in parties like the greens where social justice , rather than status quo, is more what they're about. But unless we have mass movements on things I'm not sure anything will change and it's organised campaigning on specific issues I would like to see.

    My own priorities are research funding and severe ME medical care provision, which will require a letter from scratch, but I don't know if I will be well enough to formulate one in timtb.
     
    Last edited: May 28, 2017
  17. Cinders66

    Cinders66 Senior Member

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    Just to add of people write to female MPs raising the three times number females affected and the children angle might be a draw, as well as the typical marginilisation of women's illness. Giving them something they can feel more empathy with it relate to and also as a way in to understand that this is a social justice issue. There was a thread elsewhere where a green manifesto was declaring that MUS shouldn't be treated as psychological so a green female MP candidate might be won over. We really need a powerful, vocal woman to look at ME history, look at current failings and take this on as her cause, MP or not.
     

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