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UK - petition to hold a debate in parliament for CFS/ME treatment.

Discussion in 'Action Alerts and Advocacy' started by RogerBlack, Apr 2, 2017.

  1. RogerBlack

    RogerBlack Senior Member

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    https://petition.parliament.uk/petitions/190618
     
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  2. Tilney

    Tilney

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    2 signatures just added.
    How do you sign if you don't have an email address ?
     
  3. RogerBlack

    RogerBlack Senior Member

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    I'm unsure if you can.
     
  4. keenly

    keenly

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    Idiots debating something they know nothing about. MPs are morons.
     
  5. Binkie4

    Binkie4 Senior Member

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    I tried to sign this very recently but was told I couldn't because I had already signed it. I don't remember signing this one specifically but there have been so many.

    I very much wish there would be a debate in Parliament. So that is 100,000 signatures.

    Am concerned that there are so many petitions going round that we may be defeating ourselves .

    Not sure what is the way forward.
     
    Invisible Woman likes this.
  6. Barry53

    Barry53 Senior Member

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    Signed it anyway.
     
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  7. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Cornwall, UK
  8. boolybooly

    boolybooly

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  9. Esther12

    Esther12 Senior Member

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    I think that this is badly phrased and could be used against us. I don't really know what it means. Wouldn't suprise me if any 'debate' became a chance for people to waffle about the importance of not stigmatising psychiatric conditions, and it would be difficult to blame them for that.
     
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  10. shannah

    shannah Senior Member

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    I received the email below in my inbox this morning. The petition has now collected 7403 signatures and needs 2597 additional signatures before May 3rd.

    Please do what you can to share it and bring to the attention of others to sign. UK signatures only please. Thank you.

    "With the snap general election this ME petition is going to be closed on May 3rd much earlier than expected. The petition needs at least 10,000 signatures to get any kind of response from Parliament. The last ME parliament petition just fell short of the 10,000 signatures and it would be such a shame if this petition just falls short again. It stands at 7369 signatures today. It would be great if people could sign and very appreciated. Thank you."

    https://petition.parliament.uk/petitions/190618
     
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  11. Tilney

    Tilney

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    I asked the HOC how my Mother could sign the petition as she does not have an email address- this is part of the reply I received today

    upload_2017-4-21_16-20-33.png
     
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  12. shannah

    shannah Senior Member

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    That's useful to know @Tilney.

    Thanks for sharing the reply with us.
     
  13. Matthew Jones

    Matthew Jones Senior Member

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    A debate among non-experts (MPs) might not be particularly useful. I doubt it would do harm either, so I've signed.

    While I'm sure they would be trying to help, there's A LOT of background reading to do to get up to speed on this issue and I doubt they would have the time to read both sides of the "debate" (psychological vs physical) and reach the right conclusion - that the weight of evidence overwhelmingly argues that it is physical.

    Because the public, doctors and MPs look to the scientific experts for information about illness, and when those experts disagree, the only conclusion to be drawn is that there is a debate going on about the cause. Unless they look at the evidence themselves they don't know which expert to trust and they don't have time to actually look at the evidence (the individual studies, the IOM report, etc) and make up their own minds.

    If they do go ahead and have a debate I'd suggest someone prepares an 'info package' for them to read beforehand with all the strongest evidence we have available, as well as a debunking of the PACE trial by as authoritative sources as possible.
     
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  14. slysaint

    slysaint Senior Member

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    10,000 signatures will only get a response, not a debate.
    Most likely they will say something along the lines that these matters are dealt with by NICE.....end of reply.

    Still worth signing, but remember MP Kelvin Hopkins questions all received similar brush-offs, although it was good that they at least were acknowledged/recorded.
     
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  15. suseq

    suseq

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    Received this morning via email this response which is sent automatically to all who signed this petition
    – “Debate in Parliament the absence of an effective policy for the treatment of M.E”.

    Needless to say it's a disappointment and mess of conflicting and discredited guidance, though there seems to be a smidgen of hope in the final two paragraphs.

    Government responded:

    The Government accepts the World Health Organisation’s classification of CFS/ME as a neurological condition of unknown origin.

    Many potential causes for CFS/ME – including neurological, endocrine, immunological, genetic, psychiatric and infectious – have been investigated, but the variety of symptoms and the range of their severity cannot be fully explained. As the symptoms of CFS/ME resemble those of other forms of debilitating illness and there is no test with which to make an accurate diagnosis, it is not always easy to diagnose single cases of the condition. Diagnosis relies on clinical observation of symptoms by healthcare professionals.

    For those affected, it is important that they receive the right diagnosis and that the treatment and support they receive are tailored to their symptoms, needs and circumstances. NHS clinical commissioning groups are responsible for ensuring that local people affected by CFS/ME are able to access appropriate care.

    To support local services in the diagnosis, treatment and support of patients with CFS/ME, in 2007 the National Institute for Health and Care Excellence (NICE) published a clinical guideline on the management of CFS/ME in adults and children, which sets out best practice on the care, treatment and support of patients with CFS/ME. NICE is the independent expert body responsible for developing robust, evidence based guidance for the NHS to design services that are in line with the best available evidence.

    The NICE guideline on CFS/ME recommends treatments, such as cognitive behavioural therapy (CBT) and graded exercise therapy (GET) approaches, that have the clearest research evidence of benefit. However, it does not detract from the right of patients to be involved in decisions about their treatment.

    The guideline recognises there is no one form of treatment to suit every patient and it does not force patients into treatments they do not want. Instead, it emphasises a collaborative relationship between clinician and patient, that treatment and care should take into account personal needs and preferences, and that healthcare professionals should recognise that the person with CFS/ME is in charge of the aims of the treatment programme.

    It is also important to clarify that the effectiveness of CBT as a treatment for CFS/ME does not make assumptions about the nature of the illness. CBT is used to help and support people through physical illnesses and is used widely to manage many medical conditions such as arthritis, heart disease and chronic pain.

    NICE last reviewed the guidance with its stakeholders, including CFS/ME charities, in 2013. The review found no update was required and at that time no major ongoing studies or research were identified as due to be published in the next three to five years. The full guideline may be viewed on the NICE website at the following link: www.nice.org.uk/guidance/cg53

    Recently, NICE has been made aware of three US reports that have indicated there are likely to be changes in diagnostic criteria that could have an impact on the CFS/ME guideline recommendations and decided to start a check of whether the guideline needs updating. NICE has also been made aware of new information about the 2011 PACE trial, which highlighted CBT and GET as safe and effective treatment options for people who have mild or moderate forms of CFS/ME.

    At the time, NICE concluded that the results of the trial supported its existing guidance, but it will now also consider that new information as part of its check of the guidance. NICE plans to set out its decision regarding an update shortly. More information can be found at the following link: www.nice.org.uk/guidance/cg53

    Department of Health
     
    Last edited: Jun 28, 2017
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  16. Skippa

    Skippa Senior Member

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    Seems like all they needed was PACE to find ONE SINGLE person who appeared to improve under GET/CBT in order to be able to endlessly parrot the "best treatment we have, not proven to be harmful" mantra. Works great when you don't fund any other trials, because it's true, and gives politicians plausible deniability "but it IS the best treatment we have evidence of" (because we just ignored everything else).

    Absolutely noone to take the blame, nobody can be shown to have done anything wrong, followed all the regular guidelines... works PERFECTLY for them, the perfect "crime" as it were...

    The ONLY things I can see that will change all this BS is either:

    1) Manage to get PACE thrown out/retracted as the stinking pile of dishonest, manipulative tripe that it is

    Or...

    2) We finally get the biomarker and associated (cost effective) treatment... from elsewhere, but hey ho, as long as we get it!
     
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  17. Skippa

    Skippa Senior Member

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    Looks like you were right :thumbsup:
     
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