The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Policy Change Now campaign: email UK officials!

Discussion in 'Action Alerts and Advocacy' started by sproggle, Oct 28, 2010.

  1. sproggle

    sproggle Jan

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    *Post Edited*

    [video=youtube;B0b8KBpuUsU]http://www.youtube.com/watch?v=B0b8KBpuUsU[/video]

    The ME/CFS patient community, sufferers, family members and friends; it's time to join together once again and demand policy change in the UK!

    The “POLICY CHANGE NOW” campaign has just four simple steps or AIMs and taking part in our campaign is easy. For two weeks, 30th October - 12th November, send a daily email as follows:

    1. Address your email
    2. Inform the campaign Bcc: ukpolicychange@gmail.com
    3. Message, copy and paste our message
    4. Start over; repeat these actions once each day.

    Sample message: (adjust as necessary)

    To: lansleya@parliament.uk, dhmail@dh.gsi.gov.uk
    Bcc: ukpolicychange@gmail.com

    Dear Rt Hon. Andrew Lansley MP,

    Stop allowing policy to support the refuted psychiatric model of ME/CFS, which presumes that ME/CFS has no organic basis and is therefore contradictory to current science and research on XMRV and other viruses. Pledge to make a definitive policy change now. Patients and their families are waiting.

    Jane Smith, Newcastle
    Housebound and bed-bound since 1999

    Send to:
    1) Rt Hon. Andrew Lansley, Secretary of State for Health
    Email: lansleya@parliament.uk, dhmail@dh.gsi.gov.uk
    Bcc: ukpolicychange@gmail.com

    2)Dame Sally Davies, Chief Medical Officer at the Department of Health
    Email: CMOweb@dh.gsi.gov.uk
    Bcc: ukpolicychange@gmail.com

    3)Sir John Savill, Chief Executive of the Medical Research Council
    Email: Linda.Willmott@headoffice.mrc.ac.uk (personal assistant's name)
    Bcc: ukpolicychange@gmail.com

    ** To avoid messages being blocked by spam filters it is best to add your own individual subject title to your emails and to Bcc: the campaign email address (ukpolicychange@gmail.com) rather than Cc: **


    Full contact info:

    1) Rt Hon. Andrew Lansley MP, Secretary of State for Health
    Email: lansleya@parliament.uk, dhmail@dh.gsi.gov.uk
    Bcc: ukpolicychange@gmail.com

    Telephone: +44 (0)20 7210 4850
    Textphone: +44 (0)20 7210 5025 (Mon to Fri 8:30am – 5:00pm)
    Fax: +44 (0)20 7210 5952

    2) Dame Sally Davies, Chief Medical Officer, Department of Health
    Email: CMOweb@dh.gsi.gov.uk
    Bcc: ukpolicychange@gmail.com

    Telephone: +44 (0)20 7210 4850
    Textphone: +44 (0)20 7210 5025 (Mon to Fri 8:30am – 5:00pm)
    Fax: +44 (0)20 7210 5952

    3) Sir John Savill, Chief Executive of the Medical Research council
    Email: Linda.Willmott@headoffice.mrc.ac.uk (personal assistant's name)
    Bcc: ukpolicychange@gmail.com

    Telephone: +44 (0)20 7670 5155
    Fax: +44 (0)20 7580 4369
     
  2. sproggle

    sproggle Jan

    Messages:
    235
    Likes:
    45
    Teesside, England UK
    *Post Edited*

    The UK 'POLICY CHANGE NOW’ Campaign.

    PRESS RELEASE

    YOUR TIME IS NOW

    For over 25 years, all evidence of viral infections and immune abnormalities in M.E patients has been suppressed. Ignored. Buried.

    Instead, the Government shut the files away in a secret Medical Research Council vault, locked for over 70 years, and listened to a group of unconventional psychiatrists, authorizing them to control policy for patients.

    NOW THERE IS XMRV

    In 1991 a researcher at the University of Pennsylvania discovered a brand new retrovirus in the blood of M.E patients. This information was deliberately buried for 18 YEARS until in 2009 the retrovirus XMRV was uncovered by the Whittemore Peterson Institute in 67% of M.E/CFS patients.

    Further evidence of Murine Leukemia Viruses in 86.5% of M.E/CFS patients was confirmed by the US agencies Food and Drug Administration and National Institutes of Health in August 2010.

    The Department of Health has BANNED the donation of blood in M.E patients from 1st November –stating it “as precaution to protect the donor's safety by ensuring their condition is not made worse by donating blood" and that “there are no plans to screen already stored blood (Anne Milton Minister for Public Health, October 2010). THEY WILL NOT ADMIT IT IS BECAUSE OF AN INFECTIOUS RETROVIRUS.

    WHY?

    The current treatment guidelines for M.E were developed by a steering group dominated by psychiatrists, who state of M.E patients:

    “Those who cannot be fitted into a scheme of objective bodily illness yet refuse to be placed into and accept the stigma of mental illness remain the undeserving sick of our society and health service”.

    Most M.E treatment centres are funded by mental health authorities within primary care trusts and placed within mental health units of hospitals and headed up by psychiatrists.

    We are not mentally ill. We are sick.

    Not only is XMRV prevalent in our blood, researchers have also found immune system abnormalities and EIGHT infectious subtypes of M.E. Antiviral trials have been a success in America yet these drugs are banned under the NICE Guidelines in the UK.

    YOUR TIME IS NOW

    The US NIH has recruited top pathogen hunter Dr Ian Lipkin to carry out further XMRV research.

    The UK authorities state “no public health action is required at this time.”

    It seems the UK Government is quite happy for this cancer-causing retrovirus to be infecting the blood supply; already it is estimated that between 3% and 7% of the healthy blood supply is infected and cancer has increased by 4% annually since 2008.

    .-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.--.-.-.-.-.-.-.-.-.-.-.--.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-.-

    The ME/CFS patient community, sufferers, family members and friends; it's time to join together once again and demand policy change in the UK!

    The “POLICY CHANGE NOW” campaign has just four simple steps or AIMs and taking part in our campaign is easy. For two weeks, 30th October - 12th November, send a daily email as follows:

    1. Address your email
    2. Inform the campaign Bcc: ukpolicychange@gmail.com
    3. Message, copy and paste our message
    4. Start over; repeat these actions once each day.

    Sample message: (adjust as necessary)

    To: lansleya@parliament.uk, dhmail@dh.gsi.gov.uk
    Bcc: ukpolicychange@gmail.com

    Dear Rt Hon. Andrew Lansley MP,

    Stop allowing policy to support the refuted psychiatric model of ME/CFS, which presumes that ME/CFS has no organic basis and is therefore contradictory to current science and research on XMRV and other viruses. Pledge to make a definitive policy change now. Patients and their families are waiting.

    Jane Smith, Newcastle
    Housebound and bed-bound since 1999

    Send to:
    1) Rt Hon. Andrew Lansley, Secretary of State for Health
    Email: lansleya@parliament.uk, dhmail@dh.gsi.gov.uk
    Bcc: ukpolicychange@gmail.com

    2)Dame Sally Davies, Chief Medical Officer at the Department of Health
    Email: CMOweb@dh.gsi.gov.uk
    Bcc: ukpolicychange@gmail.com

    3)Sir John Savill, Chief Executive of the Medical Research Council
    Email: Linda.Willmott@headoffice.mrc.ac.uk (personal assistant's name)
    Bcc: ukpolicychange@gmail.com

    ** To avoid messages being blocked by spam filters it is best to add your own individual subject title to your emails and to Bcc: the campaign email address (ukpolicychange@gmail.com) rather than Cc: **

    Full contact info:

    1) Rt Hon. Andrew Lansley MP, Secretary of State for Health
    Email: lansleya@parliament.uk, dhmail@dh.gsi.gov.uk
    Bcc: ukpolicychange@gmail.com

    Telephone: +44 (0)20 7210 4850
    Textphone: +44 (0)20 7210 5025 (Mon to Fri 8:30am – 5:00pm)
    Fax: +44 (0)20 7210 5952

    2) Dame Sally Davies, Chief Medical Officer, Department of Health
    Email: CMOweb@dh.gsi.gov.uk
    Bcc: ukpolicychange@gmail.com

    Telephone: +44 (0)20 7210 4850
    Textphone: +44 (0)20 7210 5025 (Mon to Fri 8:30am – 5:00pm)
    Fax: +44 (0)20 7210 5952

    3) Sir John Savill, Chief Executive of the Medical Research council
    Email: Linda.Willmott@headoffice.mrc.ac.uk (personal assistant's name)
    Bcc: ukpolicychange@gmail.com

    Telephone: +44 (0)20 7670 5155
    Fax: +44 (0)20 7580 4369

    Here's our instructional campaign video:
    http://www.youtube.com/watch?v=B0b8KBpuUsU
     
  3. Min

    Min Guest

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    thank you!!!!
     
  4. Trooper

    Trooper Senior Member

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    It would be good to get this posted on the WPI facebook group's discussion page too? I'm not on there so I can't do it.

    I can't see a suggestion for the subject line. I am foggy though!

    It may be best for people to add their own subject line, as I imagine they will set up email filters after a day or two?

    Good stuff Sproggle : )
     
  5. sproggle

    sproggle Jan

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    Teesside, England UK
    Just posting an update to the campaign instructions!

     
  6. Enid

    Enid Senior Member

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    Well put Sproggle - I'll do my best newish to this computer.
     
  7. maryb

    maryb iherb code TAK122

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    The hardest part is setting it up once done its easy to just change the title of the e-mail - they should accept them for a few days at least until they get fed up with us:)

    I don't think it has to be just UK citizens please anyone feel free to join us in this.
    I changed mine slightly to the following.


    Dear........

    Stop allowing health policies which support refuted psychiatric models of ME/CFS, which presume that ME/CFS has no organic basis. This is contradictory to current science and research with particular regard to XMRV and other viruses. Pledge to make definitive policy changes NOW, patients and their families are waiting.


    Still Sick
     
  8. Enid

    Enid Senior Member

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    All set up ready to go maryb. Slightly difference emphasis chosen as my concern is with the presence still of Psychiatrics in policy forming bodies. So it reads ...stop allowing the policy which was set up, is maintained, and dominated by psychiatric modelling. Such a non organic basis is totally contradictory to current Science... ie should be consulting the real experts and we know who they are here.
     
  9. sproggle

    sproggle Jan

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    45
    Teesside, England UK
    *Participation from patients, family members and friends around the world is encouraged!!* :hug:

    Note you will likely receive the following response from the lansleya@parliament.uk address:

    This second email address, dhmail@dh.gsi.gov.uk ,is included in our instructions, we recommend using both.
     
  10. sproggle

    sproggle Jan

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    45
    Teesside, England UK
    Thanks for your support Enid and maryb :hug:


    Please everyone remember to support the UK campaign no matter where you are in the world! :thumbsup:
     
  11. Enid

    Enid Senior Member

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    All emails sent (slightly different to each). Hope you are having good support, coinciding with Nov 1st London protest. I will forward copies later (slight concern about releasing one's email outside PR - the still hovering anti-brigade in all it's forms). All the best.
     
  12. justy

    justy Donate Advocate Demonstrate

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    Hi, i have done it, i hpe correctly. I am not very well versed with computers and e mail so didnt really understand all of the instructions. Do we send individual e mails or just cc the list. also i dont know what Bcc means - i am afraid i haveb een ill for so long i havent ever had a job where a computer was necessary!

    What i did was to copy the email, add my name etc and adress it to dear sirs and nmadam and cc it rather than send individual ones.
     
  13. Sasha

    Sasha Fine, thank you

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    Hi justy - Bcc means "blind carbon copy" (ah, those were the days!). If you Bcc someone into your email, they receive the email but other people can't see that they received a copy. I often Bcc myself if I want a copy of an email I'm sending out.

    It's usually just a little bit harder to spot the Bcc button than the Cc button but it's almost certainly there on your email programme.
     
  14. justy

    justy Donate Advocate Demonstrate

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    hmm, thanks sasha, will look later.
     

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