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Invest in ME now fundraising for a Rituximab trial!

Discussion in 'Fundraising' started by snowathlete, Jun 7, 2013.

  1. Min

    Min Senior Member

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    IiME have just issued the following statement and the MEA are not listed as supporters of this trial:
  2. Sasha

    Sasha Fine, thank you

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    I don't think IiME ever listed the MEA as supporting the trial. You'd have to ask them why not - I've no idea.
  3. Min

    Min Senior Member

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    Maybe because they are not?
  4. Sasha

    Sasha Fine, thank you

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    I've explained why I think they are - and I think I'll just leave it at that.
  5. Battery Muncher

    Battery Muncher Senior Member

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    Sorry, my brain is not working well. To clarify -

    1) the MEA want to know if the trial has been set up properly. If it is set up properly they will donate £60k.

    2) But the details of the trial have not yet been finalised.

    3) The details of the trial will only be finalised after Prof. Edwards does a pre-trial study. (To 'test the waters'?)

    4) So the MEA will only donate after Prof. Edwards completes the pre-trial study AND the actual final trial. Because it wants to look at the details of the final trial.

    5) This should be straightforward. No problems are expected.

    Have I got this right? Also, when does Prof. Edwards expect to have the pre-trial study done?
    Bob and Sasha like this.
  6. Sasha

    Sasha Fine, thank you

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    Yes. [Edit: as a pledge, I don't know if they'd wait until all but £60k was in.]

    That's right.

    Details of the pre-trial study haven't been released but its results will inform the design (and possibly the size) of the trial itself.

    No - the MEA want details of the trial's protocol - that is, its exact design - before it will release the funds to UCL. Then, presumably once the full amount (not yet announced) is raised, including the MEA money, the trial will proceed.
    That's right.

    He gave an update recently on the gigantic thread about the trial - I'm afraid I can't remember what he said.
    aimossy, Battery Muncher and Bob like this.
  7. Min

    Min Senior Member

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    Thanks BM and Sasha, now I understand , please excuse the brainfog.
    Sasha and Battery Muncher like this.
  8. Battery Muncher

    Battery Muncher Senior Member

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    Thanks for clearing that up Sasha! That was a very helpful answer :thumbsup:
    Sasha likes this.
  9. Battery Muncher

    Battery Muncher Senior Member

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    @Min No excuses needed, we're all having problems here!
    Sasha and rosie26 like this.
  10. amaru7

    amaru7 Senior Member

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    I wish that they would change the study to something else and focus on mitochondria cause I believe this is the main culprit in cfs.
    http://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure

    As I've mentioned in the Charité - one of the most prestigious clinics in Berlin Germany with a reputation- rituximab had been a failure in the immunology study of Prof. Scheibenbogen and usage it left many patience worse off. They stopped investigating it.
  11. Sasha

    Sasha Fine, thank you

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    Every time a campaign starts up to fund any study, people want the investigators to drop their own research plans and investigate someone else's theory.

    That's not going to happen, I'm afraid - researchers research what they're interested in and what they specialise in.

    But if Dr. Myhill wants to design a trial or team up with researchers to design a trial on mitochondrial function, she can - and can then set up an appeal for funds. If you want that to happen, you can encourage her to do that.

    I had thought that Prof. Scheibenbogen had been seeking funds for a Rituximab trial, but maybe that information is out of date. Have you seen a published report of her Rituximab results from the immunology study? If so, it would be helpful to discuss them on the main Rituximab thread:

    http://forums.phoenixrising.me/inde...ximab-trial-30-july.24499/page-43#post-446844

    Professor Edwards, who is leading the UK trial, posts on that thread so you can tag him and get direct answers to your concerns.
    Blue likes this.
  12. Sasha

    Sasha Fine, thank you

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    Every time a campaign starts up to fund any study, people want the investigators to drop their own research plans and investigate someone else's theory.

    That's not going to happen, I'm afraid - researchers research what they're interested in and what they specialise in.

    But if Dr. Myhill wants to design a trial or team up with researchers to design a trial on mitochondrial function, she can - and can then set up an appeal for funds. If you want that to happen, you can encourage her to do that.

    I had thought that Prof. Scheibenbogen had been seeking funds for a Rituximab trial, but maybe that information is out of date. Have you seen a published report of her Rituximab results from the immunology study? If so, it would be helpful to discuss them on the main Rituximab thread:

    http://forums.phoenixrising.me/inde...ximab-trial-30-july.24499/page-43#post-446844

    Professor Edwards, who is leading the UK trial, posts on that thread so you can tag him and get direct answers to your concerns.
  13. amaru7

    amaru7 Senior Member

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    I have no contact to Dr myhill in Wales and if my memory serves me right I think she already has done a study on the mitochondrial aspect. As for proof. Scheibenbogen, I cannot provide you with any documents. All I can tell you is that I went myself to the Charité (600km drive, man that was exhausting) for immunological check up and the Dr . herself told me that research with rituximab had been halted due to unexpected negative outcome and they're never going to use it in treatment.

    I mean the money is there and imo wasted already that's sad but not my issue here. I just wish for the patients not to get harmed like the ex-soccer player Olaf Bodden who took rituximab out of study on his own risk and it left him more sick and debilitated and many others within the clinical trials as well.
    Last edited: Apr 4, 2014
  14. Firestormm

    Firestormm Guest

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    Morning :)

    Not that it matters I don't suppose but I exchanged emails with the Professor in August last year, to enquire if the heralded Rituximab Study in Germany would take place. She replied:

    I think that she (and others) felt that they might just as well wait and see what happens elsewhere. But of course she may have implied differently in your conversation - though as far as I know there are no health warnings preventing the use of Rituximab (other than those we know about).
  15. Min

    Min Senior Member

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    Invest in ME are a tiny charity run by three volunteers, they cannot fund everyone's desired research.

    The money for their research is mainly collected a pound at a time from patients themselves whilst the UK government throw millions at research into psychobabble. They are doing their best.
    RL_sparky, Sidereal and Blue like this.
  16. amaru7

    amaru7 Senior Member

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    I don't know as I didn't dig into details on Rix, I can just tell you what she said plus I had contacted Mr.Bodden and his Rix experience was devastating. Luckily for him, at least he was able to earn enough money before onset so that he's able to afford support unlike many of us and that's how he put it himself. He's aware that some are even in a worse situation than he is
  17. Blue

    Blue

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    Yes, Olaf Bodden reacted badly to Rituxan but we shouldn't forget that many norwegian patients improved substantially with it. This is reason enough in my opinion to do further clinical trials with RTX like the Norwegians or IiME are planning. It's scientific groundwork which is now going to be done which lacks in many other scientific fields in ME/CFS: Phase III trials, Multicenter-Trials, to prove or disprove the original hypothesis, nothing more, nothing less. I think we should be glad that these trials are going to happen. We can't rely on single cases or anecdotes.
    rosie26, aimossy and Min like this.
  18. Cheesus

    Cheesus Senior Member

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    Can someone just clarify something for me (fatigue and brain fog are preventing me absorbing information). MEA said they would donate 60k to the trial once they had seen a preliminary trial done? The trial is now at £291k of £350k total, so including the MEA's 60k we are there?

    Shouldn't we be full steam ahead to get the preliminary trial going? I don't know how these things work...
  19. Cheesus

    Cheesus Senior Member

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    Also, just so you guys know, I have my lottery ticket bought for this evening so when I win I'll fund both this and Lipkin's study ;)
  20. Firestormm

    Firestormm Guest

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    They have asked to see the Trial protocol, not a preliminary trial. As yet UCL have not produced anything - I believe from what Professor Edwards has said (and elsewhere), the documents are being processed. Also it is not clear yet what amount of money will be needed by the study before the actual Trial commences. The £350k is an initial target: and they hope to conduct a study before the Trial that will be a part of it... but a study that personally I can't wait to see :)
    aimossy, Bob and Cheesus like this.

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