fight for a cure and tansy where are you?

Discussion in 'Fibromyalgia Main Forum' started by simpsons, Feb 9, 2011.

  1. simpsons

    simpsons Member

    hey you two where are you not been on for a while but don t seem to see you on here anymore.

    missed both your posts

    simps
  2. tansy

    tansy New Member

    Hi Simps. I've not visited PH for long time but after seeing all the media reports on the publication of the PACE trial thought I'd take a peak to see if anything was reported here and found your message. Been busy responding to newspaper articles, next step is a letter to my MP.

    It's been a Black day for PWME in the UK. :-(

    There's are good contributions on page 4 of the comments under The Guardian's report.
    http://www.guardian.co.uk/society/2011/feb/18/study-exercise-therapy-me-treatment?commentpage=4#start-of-comments

    Tansy[This Message was Edited on 02/19/2011]
  3. simpsons

    simpsons Member

    v good to hear from you and yes a very very black day in the uk :(

    beyond belief as they have banned us from giving blood and now its again all in our heads

    yes some good comments on that link. how medical reporters can report this and not harvey alters paper is beyond belief.

    ethics in the uk are unreal, discrimination human rights abuse

  4. tansy

    tansy New Member

    Hi Simps. Many are predicting that this will have a knock on effect globally. There are no ethics in the UK anymore just number crunching and marketing; it's this environment that made it so easy for the Wessely School to change the name and definition of ME, and to ensure their form of CBT and GET are the only funded treatments made available to us.

    It suits the Govt, especially the DWP, because they want to reduce the numbers receiving sickness and disability allowances, and as you are no doubt already aware their proposals are going to mean less money even for the those individuals they promised to protect.
    [This Message was Edited on 02/19/2011]
  5. simpsons

    simpsons Member

    yes you are so right, and yes already aware that this is a way to reduce the numbers on sick and disability not just for the gov but for the insurance companies. vested interests all round

    the only charity i can see who has not stood up and made statement against this is action for young people with me.

    we need to as a worldwide community unite and fight this.

    we can never trust the uk government to fund correct research, if you look at the numbers of patients in the world with ME then if everyone could donate just 10 dollars we could make a start to get the research done

    if we could find a way to do a really hard hitting public campaign so that the public could see what was happening and make them aware then maybe even in this difficult financial time we could fight back.

    the patient studies that afme and me association in the uk have done should be written up as papers the no of patients would be far greater than the no in the pace trial

    invest in me have the conference coming up in the uk and the centre they are trying to set up in the uk working with the wpi is the way forward.







  6. simpsons

    simpsons Member

    http://www.cnn.com/2011/HEALTH/02/17/chronic.fatigue/

    cfids about cbt get in the usa

  7. tansy

    tansy New Member

    Since this trial was partly funded by the DWP the previous Govt's intentions were clear. The current Coalition Govt have announced their replacement for DLA so I don't see them being interested in anything but the inaccurate conclusions of the PACE trials. Other patient groups have yet to wake up to what is in store for them too.

    The new allowance to replace DLA has already made many realise the Govt is hellbent on reducing payments to the sick and disabled and not concerned about the hardship this will cause. In this climate it's clear that public funding is not the answer in the UK.
  8. tansy

    tansy New Member

    have been well thought out and presented. The proposed centre is an ideal way to start turning the tables around and provide PWME with what they need.

    The political climate here is just appalling, the chronically sick and disabled have no doubt been seen as an easy target and the media have been only to happy to play along. As a result hate crimes against the disabled have increased and many report being on the receiving end of verbal abuse on a regular basis.