1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Science to Patients: Talking ME, Exercise and the Mitochondria - with Dr Charles Shepherd
The latest video release from the Dutch group ME/cvs Vereniging, with Dr Charles Shepherd from the UK ME Association, and announcing a live chat session to be held Thursday, April 10, 2014...
Discuss the article on the Forums.

The UK Rituximab Trial: A Study in a Hurry

Discussion in 'Phoenix Rising Articles' started by Mark, Aug 12, 2013.

  1. Bob

    Bob

    Messages:
    7,742
    Likes:
    9,268
    England, UK
    I think it's good to always be sceptical and questioning of motives, and to be aware of the UK politics. And I think this project is definitely best left to IiME to organise along with the UCL. (Too many cooks spoil the broth.) And other than offering funding without any interference, I certainly don't want AfME having anything to do with it, given their track record and their current medical advisor. But I don't personally mistrust the MEA. Actually, I have come to respect and appreciate the MEA as I've learned more about them over the past couple of years.
    peggy-sue likes this.
  2. Firestormm

    Firestormm Senior Member

    Messages:
    5,819
    Likes:
    5,939
    Cornwall England
    You are not reading what I have said in my comment above - or choosing not to I don't really know which.

    IiME are saying that any donations - from whatever source - will be 'owned' by them to do with that they wish. In the event of this 'Trial' which is little more than an idea at the moment - it has no concrete foundations yet - not happening; IiME will retain all the donations to do with as they please.

    This is not a position that other charities will find palatable for very obvious reasons but especially as there is nothing on the table yet. The funds that the MEA - for example - have in their fund were donated to the MEA who have expressed a desire to fund further research into Rituximab and a Trial should one be deemed feasible.

    Other charities have indicated their similar interest in funding further research around Rituximab should a proposal be forthcoming from at this point in time UCL; and should it pass independent peer-review.

    Whether the money comes from IiME and their funding efforts or from other sources; it doesn't matter. Once the proposal is agreed upon then others may choose to fund it.

    Who cares where the money comes from? The main thing you should be focusing on is that the research proceeds if it is deemed worthwhile - by UCL and by those who are willing to fund it.

    I think once a proposal is on the table - you will see concerted efforts from ALL charities who have expressed an interest.

    At the moment they are waiting to see what happens i.e. what UCL and Professor Edwards come up with by way of recommendation.
    Bob likes this.
  3. Bob

    Bob

    Messages:
    7,742
    Likes:
    9,268
    England, UK
    To address the confusion about the MEA's position, I've looked up the clearest details that I could find...
    I'll post the details below, and then leave it for others to interpret...

    These quotes are taken from Charles Shepherd's posts on MEA's Facebook account.
    I've extracted the most relevant info, and provided links to the full information...

    (my bolding)


    And then there's further clarification here:

    Simon likes this.
  4. lilpink

    lilpink

    Messages:
    42
    Likes:
    32
    Mmm mmm..I think our different interpretations and perspective may be borne of a (very) long history of this illness and its politics in the UK, not to mention the incredibly long thread of questioning and answers by CS on FB to even arrive at that capitulation...
  5. lilpink

    lilpink

    Messages:
    42
    Likes:
    32
    I agree with most of your assertions..but not the final conclusion re MEA. The longer I have been associated (as a member) with MEA the more I've become disillusioned and seriously in doubt re their intentions. Conversely, I have absolute trust in the integrity of Invest in ME, not to mention their ability to have transformed the world stage for dissemination of related science via their Conferences and pre-conference research workshops (all done since their inception in 2006 and done using only unpaid volunteers. The MEA have been 'at it' since 1976 and achieved ..well.. not very much. AfME have brought any notion of a patient centred charity into oxymoronic disrepute).
  6. Bob

    Bob

    Messages:
    7,742
    Likes:
    9,268
    England, UK
    I totally agree with you about IiME and about AfME. But I have no reason, personally, to mistrust the MEA. MEA have a different style to IiME, and are member-focused, providing services to members. They don't have block-buster conferences, and their approach might not be quite as focused or indignant as IiME's, but I've not seen them supporting or promoting the psycho-social model since I've been a member. If I did, then I wouldn't be a member. In fact, Charles Shepherd has had letters published, attacking the PACE trial, for example. They also do a lot of work advocating for ME patients to get DWP/ATOS rules changed. I think this isn't an area that IiME gets involved in.
    Valentijn likes this.
  7. Bob

    Bob

    Messages:
    7,742
    Likes:
    9,268
    England, UK
    Sasha, thanks for the great article. Very informative. :thumbsup:
    Sasha likes this.
  8. Bob

    Bob

    Messages:
    7,742
    Likes:
    9,268
    England, UK
    lilpink, I'm not sure if continuing a negative conversation about the merits of each UK charity will really help fund the Rituximab trial? So I'm bowing out of further discussion on this thread. We have differences of opinion, and that's fine.
    OverTheHills and Sasha like this.
  9. lilpink

    lilpink

    Messages:
    42
    Likes:
    32
    Mmm again. You don't feel there's a conflict apropos your assertion that they don't support or promote the psycho-social model and their membership of the UKRC? I personally feel that's a HUGE concern..but we must make our own minds up about that. I'd take umbrage with the use of the word 'indignant' if used pejoratively about Invest in ME, but not if used in the context that we all should rightly be incensed (and indignant) about the way in which those who suffer this illness have been treated....
  10. Sasha

    Sasha Fine, thank you

    Messages:
    7,544
    Likes:
    5,559
    UK
    We've got a bit bogged down here in an area of discussion where I suspect we're not going to make any progress in reaching agreement - which, as Bob says, is fine. We're all entitled to our opinions and the important thing, as far as I'm concerned, is that we donate to the trial - and everyone should donate to whatever charity they're happy to entrust with their money.

    I suggest we move on to something more productive, namely: has anyone got any questions for Prof. Edwards that they'd like to put to him for the interview I'll be doing with him in the follow-up article?

    Also: has anyone got any good ideas for fundraising projects for the trial? Is anyone doing anything special?
    Bob likes this.
  11. lilpink

    lilpink

    Messages:
    42
    Likes:
    32
    I agree. I think you take a sensible and measured approach. I'm not sure all the details can be addressed within this forum....maybe we will have to wait for history to tease them apart and examine them more openly and ruthlessy. Without full disclosure, from all sides, it's nigh impossible to to create a properly coloured-in picture...but I'd like to think my colouring book has a more detailed 'dot to dot' drawing than some, and more than just 'black' and 'white' to paint with...
    So people can make up their minds..of course..that's what we are all entitled to do... but the amount of information provided here isn't enough of a resource to provide a full understanding of the situation (imo of course! :) )
    Sasha likes this.
  12. lilpink

    lilpink

    Messages:
    42
    Likes:
    32
    I'm happy to leave the conversation at this point..I simply wanted to ensure that the facts were presented properly..without spin. Thanks, Sasha, for the article. Hope to see more of the same when the trial is up and running.
    Sasha and Bob like this.
  13. Bob

    Bob

    Messages:
    7,742
    Likes:
    9,268
    England, UK
    'Indignant' was definitely not used pejoratively. I couldn't think of a better word to use to describe IiME's 100% focus on the injustice in the way ME patients are treated. I totally support IiME, and always have done.
  14. Sasha

    Sasha Fine, thank you

    Messages:
    7,544
    Likes:
    5,559
    UK

    Thanks - yes, I hope to be writing more articles as things progress and of course I'll be presenting the interview with Prof. Edwards soon (if anyone gives me any questions to ask him, that is!).
    Firestormm likes this.
  15. Dolphin

    Dolphin Senior Member

    Messages:
    6,518
    Likes:
    4,897
    I don't interpret the MEA joining of the UKRC as evidence that they support or promote the "psychosocial model" (and my views are similar in terms of ME Research UK joining it). I believe both have joined with the hope that it will lead to a lot more biomedical research.

    Saying that I am concerned that it may lead to problems. So in my view, it may turn out to be a good thing in the long wrong, or it may cause more problems than it helps in the long term. But I don't interpret a charity getting involved with it as evidence that they support or promote the "psychosocial model" (and my view would be similar of an individual who was supportive of it).

    So I accept that people may believe that the UKRC will cause more problems than it solves, and hence could be unhappy with a charity getting involved. But for me, it doesn't provide strong evidence of a charity's support or promotion of the "psychosocial model". I think what charities do and say in other areas give us a better idea of their positions on this (and similarly with individuals who are supportive of it).
    Bob and Firestormm like this.
  16. Sasha

    Sasha Fine, thank you

    Messages:
    7,544
    Likes:
    5,559
    UK
    Can I suggest that any discussion of the UKRC goes onto another thread? I think it probably already has its own thread somewhere. Like I said, I don't think we're going to resolve all these thorny issues here and I think we're in danger of getting a long way off the topic of the Rituximab trial. :)
  17. Legendrew

    Legendrew Content team

    Messages:
    525
    Likes:
    658
    UK
    Good article - well written and well informed!
    Sasha and Firestormm like this.
  18. Bob

    Bob

    Messages:
    7,742
    Likes:
    9,268
    England, UK
    Simon and Sasha like this.
  19. lilpink

    lilpink

    Messages:
    42
    Likes:
    32
    Good to know :) Support well placed .
  20. lilpink

    lilpink

    Messages:
    42
    Likes:
    32
    Good to know too :)

See more popular forum discussions.

Share This Page