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A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
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Come in the UK's media,your time has come !

Discussion in 'General ME/CFS News' started by Quilp, Aug 24, 2010.

  1. TomStones

    TomStones

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    I had just assumed that the Guardian piece was just a sop to complaining voices, as was the M.E/CFS and benefits piece in the "comment is free section". It's just something taken off the wires and has no analysis of what it all means for patients or of the implications for blood supply.

    I'm still astonished that no journalist has found either the issue of possible tainted blood transfussions or the issue of transmission amongst/between healthy people, to be newsworthy. It's either absolutely astonishing or absolutely untrue and that these stories are being written but not accepted for publication. I can't believe the former and i don't wan't to believe the latter.
     
  2. taniaaust1

    taniaaust1

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    Sth Australia
    Sounds interesting... i will check that one out sometime. ah are you talking about the STD thing?? That's the kind of thing I already do and have been doing for years now to help get info out. (i even once got referenced in a medical study and quoted. by someone who thought i was a CFS/ME specialist. LOL i do consider myself a speicalist as i know far more then any of my doctors and my own CFS/ME specialists.. but obviously i confused some medical peoples LMAO so they thought i was some high authority.

    Im quite worn out right now... just got the Aussie page that much closer to being finished by getting together links of raw info people can use in advocacy :) . It just needs some touch up now and it will be finished :) .

    The "material you may want to include in advocacy" section in it is suitable for being used for other countries (with just a few alterations) so if anyone anywhere is doing a wiki advocacy page for another country, they can copy that section. http://www.forums.aboutmecfs.org/sh...view Project:Australian Advocacy Contact List

    (awol.. my comment on using some of that material is directed to anyone.. not you.. just wanting to make sure you know this so you dont take my comment wrong way :) )
     
  3. awol

    awol *****

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    Me too Tania. The wars here are exhausting.

    This is a good idea Tania. We should probably clearly label stuff in ours that can be reused too.
     
  4. lancelot

    lancelot Senior Member

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    southern california
    How can very sick people with CFS/ME fight against a government run media and a government run health care system ruled by psychs who say CFS/ME is a mental disease cured by CBT/GET?

    Bloody hell!
     
  5. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Europe
    Hi Lancelot,

    Hopefully by having the involvement of :
    * outstanding scientists at an outstanding institute (Mikovits at WPI & Silverman at NCI & their teams),
    * from another country (anywhere powerful & influential as long as its not UK),
    * riding to their rescue with an outstanding scientific discovery (XMRV), which is
    * infectious in the blood and then
    * having it confirmed by other outstanding scientists (Drs Alter & Lo),
    * in another (powerful and influential) country (anywhere as long as its not UK),
    * working for a government organisation in said influential country, which of course then encourages
    * phenomenal government funding ...

    Phewww - what were the chances of all that happening?

    But you're right - up until now things have been totally desparate for us.

    Roll on the September "XMRV (& MLV related-virus?!) Conference"!
     
  6. lancelot

    lancelot Senior Member

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    southern california
    Yes, a good list and is true for countries like the US, Canada, Japan, and many other countries. But, will the UK be able to overcome and change their immovable stance on CFS/ME when the powers to be lie not with the people but with the government and the powerful psych lobby that runs policy, research and health care? Do you think the UK's stance on CFS/ME will automatically fold once the US solidifies the XMRV/MLV connection and starts using ARV's as standard treatment for all PWC in the US?
     
  7. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Hello,

    Yes, I guess we are hoping a transition (?miracle) may occur since the latest US developments.

    The WPI have been conducting their own XMRV studies in the UK and are going to discuss the results of the first 50 patients at the September Conference. They have taken extraordinary steps - all will be revealed soon - to ensure that these results will be unimpeachable.

    I am part of this study but not yet tested.

    There are also some reportedly other positive results from other European countries.

    Nothing ofcourse can be guaranteed at this stage, but it is the best news we've heard so far which may tip the balance in the near future. I think its unlikely that SW would persevere with his current stance if for eg, Dr Alter confirmed XMRV or MLV related-MLV's in UK patients. There are a number of possible scenarios which may alter the paradigm. The best one of course would be if the FDA/NIH could prove causation and translate those results to the UK.

    A standardised XMRV testing kit is potentially the first step and I understand that the SAIC and NCI are working on this as we speak.

    ps not sure if my text size will come out huge - I seem to have pressed a magic button somewhere!
     
  8. TomStones

    TomStones

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    Because we have nothing to lose and everything to gain, as well as having truth on our side.The question you should be asking is "How can we lose".
     

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