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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. sproggle

    Get a Ringside Seat for Invest in ME’s 10th International Conference on 29 May

    P.S. IiME are now tweeting on day 2 of the colloquium, as well as continuing to post in their Facebook group. There is more content (including photos) from day 1 on Facebook, here's the BRMEC5 thread started yesterday - https://www.facebook.com/groups/5804522506/permalink/10152916558012507/...
  2. sproggle

    Get a Ringside Seat for Invest in ME’s 10th International Conference on 29 May

    Agreed on the suspense :) It is important the colloquium is a closed two day meeting so the participants can speak completely freely and gain the most benefit from it - would love to be a fly on the wall though! Just heard from Invest in ME that it's going well and they have 220 participants...
  3. sproggle

    My B12 Protocol disaster

    I can't see how to delete this thread so have removed this personal information.
  4. sproggle

    Invest in ME now fundraising for a Rituximab trial!

    The Invest in ME/UCL Rituximab Clinical Trial Research Fund Invest in ME are pleased to announce that our initial research fund target objective of £350,000 has been reached. August 2014 In the weeks following the Invest in ME Conference 2013 events in London the charity announced its...
  5. sproggle

    Invest in ME/Prof Jonathan Edwards statement on UK Rituximab trial, 30 July

    Huge raising of awareness for ME and Invest in ME/UCL's rituximab clinical trial project "We are aiming to visit all 92 English Football League Stadiums in under 92 hours in support of Invest in ME (www.investinme.org) and to raise money and awareness for the Rituximab Trial...
  6. sproggle

    Invest in ME now fundraising for a Rituximab trial!

    £200k Pledge to IiME for UK Rituximab Trial We can announce that Invest in ME have been given a pledge of £200,000 from a foundation towards the UK rituximab clinical trial – bringing the fund to almost £260,000. The foundation has two conditions to this pledge (i) That IiME continue to be the...
  7. sproggle

    Invest in ME now fundraising for a Rituximab trial!

    New total for UK Rituximab Trial Fund of £17,000 - Let's Do It! http://ldifme.org/ Msg from IiME: 'Thank you all for this wonderful support - it sends a message to everyone!' There is now a Summary of the main points of the trial on the IiME Ritux Trial page: Quick Overview and Summary of...
  8. sproggle

    Invest in ME now fundraising for a Rituximab trial!

    The MATRIX. A new idea from the Let's Do It For ME team. The aim of the Matrix project is to help to raise as much as possible of the estimated £350,000 required to fund this trial by inviting 100 pledges to raise or donate £1000 each. We invite patients, families, friends and ME support...
  9. sproggle

    Prof Malcolm Hooper and Margaret Williams call for donations to UK Rituximab trial

    All donation links here on the IiME Ritux Trial page are specific for the Ritux Fund - http://www.investinme.org/IIME%20UK%20Rituximab%20Trial%20Home.htm#How_To_Donate We have links also on the ldifme site but have to redirect to IiME for monthly donations due to the restrictions of Wordpress...
  10. sproggle

    Prof Malcolm Hooper and Margaret Williams call for donations to UK Rituximab trial

    Great statement from Prof Hooper and MW - as always!
  11. sproggle

    Invest in ME now fundraising for a Rituximab trial!

    New fundraising total = £12,704 The IiME Rituximab Trial page has been updated with the announcement that Professor Jonathan Edwards is advising the charity on all aspects of a UK rituximab trial. http://www.investinme.org/IIME%20UK%20Rituximab%20Trial.htm The Let' do it for ME webpage will...
  12. sproggle

    Invest in ME now fundraising for a Rituximab trial!

    Really pleased this info is now public, with Professor Edwards on board (and IiME liaising with the Norwegians as well) it should prove to be a top class study :)
  13. sproggle

    Invest in ME now fundraising for a Rituximab trial!

    New total for the UK Rituximab Study = £9264 And a message from IiME: New total for UK Rituximab Trial - over £9k Thanks to all our supporters - you are a credit to positive action to find solutions to this disease. You are helping everyone with ME and their families. Thank you.'...
  14. sproggle

    Invest in ME now fundraising for a Rituximab trial!

    New total for the IiME UK Rituximab Study for ME = £4950 The updated donation options can be found here - http://ldifme.org/donate/ About the proposed trial -http://ldifme.org/uk-rituximab-study/
  15. sproggle

    Invest in ME reach £100,000 funding target

    Hello there Mark you too, yes it's been a while! :)
  16. sproggle

    Invest in ME reach £100,000 funding target

    Thanks again to everyone who helped fund this vital foundation research project at the UEA http://ldifme.org/foundation-research-project/
  17. sproggle

    Invest in ME now fundraising for a Rituximab trial!

    New total for the UK Rituximab Study for ME - £2939 http://ldifme.org/uk-rituximab-study/
  18. sproggle

    Petition AYME to Denounce PACE and SMILE

    I just want to bump this thread so people will see it and its original intention: to promote a well worded petition which a friend of mine took great pains to put together in order to help protect children with ME in the UK from the very dangerous so called treatments included in the PACE trial...
  19. sproggle

    Phase III of the Policy Change Now campaign!

    I'd really appreciate it if members of this forum could get behind this campaign, we need as many participants as possible to give us the best chance of receiving a meaningful response and not a useless standard reply! The full details, which I have posted below, can also be seen in an open...
  20. sproggle

    Policy Change Now campaign #2

    Please note that this is not a daily email campaign, we are asking you to send each of the following emails to the addresses provided just once. To take part: 1) Send the following response to Rt Hon. Andrew Lansley at lansleya@parliament.uk and dhmail@dh.gsi.gov.uk once. *Update do not...
  21. sproggle

    Policy Change Now campaign: email UK officials!

    Thanks for your support Enid and maryb :smiley-hug: Please everyone remember to support the UK campaign no matter where you are in the world! :Sign Thanks:
  22. sproggle

    Policy Change Now campaign: email UK officials!

    *Participation from patients, family members and friends around the world is encouraged!!* :smiley-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...
  23. sproggle

    Policy Change Now campaign: email UK officials!

    Just posting an update to the campaign instructions!
  24. sproggle

    Policy Change Now campaign: email UK officials!

    *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...
  25. sproggle

    Policy Change Now campaign: email UK officials!

    *Post Edited* http://www.youtube.com/watch?v=B0b8KBpuUsU 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...
  26. sproggle

    Help for Justine Roach, severe ME sufferer

    Just to say please don't call or contact the ward in any way, the staff have accepted a lot of info on ME and any further correspondence is unnecessary at this point and may prove counter productive. It has been accepted that the ward is not a suitable place for Justine and arrangements are...
  27. sproggle

    What ever happened to the Mike Dessin treatment story( follow up)?

    Yes I'm also very interested in knowing what this treatment is. The Mike Dessin story was everywhere, such a dramatic story at that! I understand individuals wanting to remain anonymous but why on earth would an entire treatment plan be kept such a secret? I find it hard to take that...
  28. sproggle

    FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

    Just so everyone is aware the WSJ has reported that the FDA &NIH replication study is "on hold". http://online.wsj.com/article/SB10001424052748703374104575337160225739290.html?mod=googlenews_wsj Stalling for time IMO Jan xx
  29. sproggle

    FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

    Love it!!! :tear: Hey maybe that's the real reason we are being kept in the dark, they are afraid a load of sick (possible contagious) people may start stalking them! :winking: Tick, tock, tick...
  30. sproggle

    FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

    This been posted yet? http://www.cdc.gov/eid/content/16/6/pdfs/10-0066.pdf "Our findings indicate that XMRV or virus-infected cells might be carried in and transmitted by the respiratory tract. Attempts to isolate infectious virus from XMRV sequence–positive respiratory samples failed...