1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Patient Experience: "What Bronllys taught me about pacing."
In 2012, Maya, who had tried to cope with ME/CFS on her own for many years, attended a pain management centre in Wales, U.K., and is now able to achieve more through pacing and acceptance, than she had been able to before the course...
Discuss the article on the Forums.

A petition to the Houses Of Parliament

Discussion in 'Advocacy Projects' started by maryb, May 30, 2010.

  1. maryb

    maryb iherb code TAK122

    Messages:
    2,699
    Likes:
    1,673
    UK
  2. Sasha

    Sasha Fine, thank you

    Messages:
    7,430
    Likes:
    5,284
    UK
    Hi maryb- I can't see a link! Maybe just me...
  3. maryb

    maryb iherb code TAK122

    Messages:
    2,699
    Likes:
    1,673
    UK
    You are right Sasha thanks:oops:
  4. Adam

    Adam *****

    Messages:
    495
    Likes:
    1
    Sheffield UK
    Signed it. Thanks for posting link.

    Adam
  5. jace

    jace Off the fence

    Messages:
    855
    Likes:
    170
    England
    Signed it. There is a space for a 500 character statement when you sign, which has got to be worth using to get further points across. This is my contribution:
    There are a quarter of a million ME sufferers in the UK. The cost to the state of supporting us all in illness is surely more than the cost of treating us so that we can get on with our lives.

    Exactly 500 characters, with the original formatting :innocent1:
  6. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    Signed it.
  7. sunlady

    sunlady Guest

    I've signed it too and asked for biomedical research into XMRV and its links to ME and Autism.

    I requested that Wessley's papers, which are to be hidden for 70 years, are made available to the public. Why are they to be hidden for so long, this is not a matter of public safety, or is it?
  8. IamME

    IamME Too sick for an identity

    Messages:
    110
    Likes:
    5
    That description mentions "deconditioning" TWICE. And this is written by a carer? Bizarre. It also defines malaise as "fatigue" and tries to get sympathy for, out of all possible symptoms and complications, emotional lability and "muscle tension". An inept description which could have been written by the CBT school, or Phil parker. A part of any request for biomedical research must contain an explanation for why the current fashionable therapies are inappropriate, which this doesn't contain.
  9. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

    Messages:
    1,718
    Likes:
    375
    UK

    @ sunlady

    What information are you relying on, please, that these documents are "Wessely's papers"?


    Response from Public Services Development Unit, National Archives

    28 December 2009

    http://meagenda.wordpress.com/2009/...-services-development-unit-national-archives/

    Shortlink: http://wp.me/p5foE-2yP

    Related material: The Medical Research Councils secret files on ME/CFS: Margaret Williams

    Response from Public Services Development Unit, National Archives

    Received via email, 22 December 2009

    Dear XXXXXXXXXX,

    Thank you for your enquiry of 17th November 2009 requesting a review of FD 23/4553/1 Myalgic encephalomyelitis (ME)/postviral fatigue syndrome (PFS): papers and journal articles; correspondence and enquiries with MRC replies Closed extracts: 40 pages 1988-1997.

    The Freedom of Information Act 2000 gives you two rights of access when you write to us asking for information. You have the right to know whether we hold the information that you are looking for, and you have the right to have the information given to you. These rights may only be overridden if the information you are looking for is covered by an exemption in the Act.

    Unfortunately, all of the information which you are looking for is covered by exemptions. This means that we cannot give you any of the information. We have set out details below of which exemptions we have applied and why.

    Which exemption applies?:

    Section 40 exemption: this section exempts personal information about a `third party (that is, someone other than the enquirer), if revealing it would break the terms of the Data Protection Act 1998, or if the person that the information relates to would not have a right to know about it or a right of access to it under that Act (because of its exemption provisions). The 1998 Act prevents personal information being released if, for example, it would be unfair or at odds with the reason why it was collected, or where the individual whom the information was about had properly served notice that releasing it would cause major and unnecessary damage or distress.

    Why this exemption applies:

    The Section 40 (2) exemption is therefore seen to be engaged towards the overwhelming majority of this file on the grounds that such is seen contain the personal sensitive data of named individuals who are believed to still be living. Whilst The National Archives is unable to comment on the specific nature of such information, it may confirm that such includes the medical details of named individuals. As such it would be considered unfair to these named parties were this material to be released into the public domain. Consequently it has been determined that the public interest is best served in this instance by ensuring that the personal sensitive information of living individuals is not released into the public domain against their reasonable expectations and that all such material is processed fairly and lawfully.

    Which exemption applies?:

    Section 41 exemption: this section exempts information from any other person if releasing it would mean breaking the terms of confidentiality in a way that is actionable by that or any other person.

    Why this exemption applies:

    Section 41 exemption: this section exempts information from any other person if releasing it would mean breaking the terms of confidentiality in a way that is actionable by that or any other person. The files contain opinions and information that was given in confidence and the release of which could be actionable.

    If you are dissatisfied with any aspect of our response to your request for information and/or wish to appeal against information being withheld from you please send full details within two calendar months of the date of this letter to:

    The Quality Manager
    Public Services Development Unit
    The National Archives
    Kew, Richmond
    Surrey TW9 4DU

    You have the right to ask the Information Commissioner (ICO) to investigate any aspect of your complaint. Please note that the ICO is likely to expect internal complaints procedures to have been exhausted before beginning his investigation.

    If I can be of further assistance, please do not hesitate to contact me.
    Kind regards,

    (Signed on behalf of)

    Freedom of Information Centre
    Information Policy and Services Directorate
    The National Archives
    Kew
    Richmond
    Surrey TW9 4DU
    0208 876 3444 ext 2552
    Fax +44 (0)20 8487 1976

    If you would like to contact us again regarding this request, please contact the helpdesk:

    via e-mail:By replying to this e-mail or (020 8876 3444)

    Remember to quote your call reference number: F0023328 in any correspondence, as this will assist us in providing you with a quick response.

    www.nationalarchives.gov.uk

    ----------

    National Archives site

    If you go to these three URLs, below, scroll each page for content and then open all the links under Context on each of the three parent pages, and their child pages, there is information about the nature of some of the material archived:

    http://www.nationalarchives.gov.uk/...69707&CATLN=6&Highlight=&FullDetails=True&j=1

    http://www.nationalarchives.gov.uk/...98595&CATLN=6&Highlight=&FullDetails=True&j=1

    http://www.nationalarchives.gov.uk/...75665&CATLN=7&Highlight=&FullDetails=True&j=1

    Extract from this source:

    http://www.nationalarchives.gov.uk/...75665&CATLN=7&Highlight=&FullDetails=True&j=1

    [...]

    Access
    Closure status Closed Or Retained Document, Open Description
    Further information about access conditions is available
    Access conditions Closed For 73 years
    Record opening date 01 Jan 2071

    Freedom of Information Act Exemption Information
    Access Status for Item FD 23/4553/1

    Extract Reference 40 pages

    FOI decision date 2008

    Exemption 1 Personal information where the applicant is a 3rd party

    Explanation These extracts contain information supplied in confidence by named individuals to the Medical Research Council in relation to applications for research grants and confidential discussions on the selection of candidates. It also contains medical information on named members of the public. The youngest person was aged at least 27 by 1997. The entire piece was previously closed for 50 years.

    Exemption 2 Information provided in confidence

    Explanation These extracts contain information supplied in confidence by named individuals to the Medical Research Council in relation to applications for research grants and confidential discussions on the selection of candidates. It also contains medical information on named members of the public. The youngest person was aged at least 27 by 1997. The entire piece was previously closed for 50 years.
  10. sibenno

    sibenno

    Messages:
    8
    Likes:
    0
    to ianme this is simon benson,and i just want to explain about the petition to you because you seem to think i havent described the my illness correctly like im from a cbt school.for 8 years now i have been like every one else with cfs /me banging my head against a brick wall really with only gaining my own knowledge about this illness through forums ,web sites and support groups.so i apoligising for using the wrong wording like fatigue instead of malaise ,and muscle tension but this is the way it is descibed by most people who suffer with m.e.also i was only allowed to explain the petition in so many characters (500) which is why i havent gone into detail about biomedical research,and when we have enough signatures on the petition with help from a local support group it will be sent to my local mp with a full account of everything thats not acceptable with how cfs/me is being treated and researched etc up to date.so i apologise for not being overaly knowledged about our illness but i am only a patient who is trying to help our cause with limited resources,perhaps it would be better to support ,instead of pointing out petty mistakes i have made.to everyone else who has signed and supported this petition thank you so much it really means a lot ,it will be running for a good few months yet until i get thousands of signatures hopefully ,if we stop complaining about our illness the powers that be ,will think we have got better and forget about us so we must keep letting them know were still here.
  11. sleepy237

    sleepy237 Senior Member

    Messages:
    246
    Likes:
    11
    Hell
    Congratulations. You have successfully signed the petition:
    Justice for CFS/ME sufferers.

    You are signer #1039 [?]

    Thanks for link <3

See more popular forum discussions.

Share This Page