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

Discussion in 'General ME/CFS News' started by Sasha, Jul 30, 2013.

  1. Valentijn

    Valentijn Activity Level: 3

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    Other departments at Radboud (the uni in Nijmegen which the clinic is associated with) do real ME/CFS research from time to time. I think they'll often partner with the clinic, thinking that they're experts in the area. My guess would be that the clinic's involvement would be more peripheral in a study like this, and at most will result in a bad cohort and really stupid introductory statements about what they think CFS is, and a conclusion mentioning the efficacy of CBT in making patients think that they feel slightly better.

    They certainly haven't changed their tune regarding ME/CFS. My doctor has never been able to get a response from them regarding my OI and norepinephrine issues, which I'd take as an indication that they're still trying to pretend that ME is a psychological problem.
    SOC, FancyMyBlood, Kati and 2 others like this.
  2. Kate_UK

    Kate_UK Senior Member

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    Min and Sasha like this.
  3. FancyMyBlood

    FancyMyBlood Senior Member

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    I always thought it was the other way around. Whenever the ME/CFS centre wanted to do a study they collaborated with a specific Radboud department. So whenever Van der Meer or Bleijenberg wanted to do a neurological study, they set up a study with Radboud's neurological department. I'm actually pretty sure it went this way because van der Meer and Bleijenberg are almost always head authors in these studies.

    Regardless, as you said, the centre probably picks the cohort and has a big role in writing the manuscript.
  4. Valentijn

    Valentijn Activity Level: 3

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    That seems somewhat unlikely - the Nijmegen group are very hard-core supporters of a psychosomatic model, to the extent that they say some very nasty things. Worse than you'd find in any official documentation in the UK even. They don't believe any real physical problems exist, so I doubt they'd waste any time investigating them.
  5. Jonathan Edwards

    Jonathan Edwards Senior Member

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    Anakinra has been used extensively in other conditions and is known to be an effective inhibitor of IL-1. There are some rare diseases that respond dramatically with resolution of severe symptoms. In rheumatoid arthritis the benefit was modest but we have reason to think TNF and IL-6 are more important there. To try it in ME/CFS is very sensible. IL-1 probably induces fatigue and other relevant symptoms in much the way that TNF does. TNF blockade I think has been tried with uncertain results (enbrel or remicade?) so far. Anakinra might do better - no reason why not. It is not the most practical of treatments but that may not matter. It would be very good to see a range of these sorts of drugs being tried in RCTs. Even if the result is negative we will have learnt something useful. And since IL-1 would be a rather broad spectrum mediator if it is involved (i.e common to many subgroups?) then patient selection might not be that critical here. Let's see.
  6. Kati

    Kati Patient in training

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    Prof @Jonathan Edwards we need more of your type in the world. Physicians forward thinking, believing patients when they say they're sick and willing to engage with us.

    May i ask your opinion in how we can achieve change in physician populations and governments, foster cooperation and exchange in how to move forward?
    Ritto, Valentijn, Sasha and 4 others like this.
  7. Firestormm

    Firestormm Senior Member

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    I can't seem to find any reference to a pending trial. Can you provide more detail, please? A bit of information follows in relation to the expertise at Nijmegan that might be of interest:

    Sasha likes this.
  8. Firestormm

    Firestormm Senior Member

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    That's OK @FancyMyBlood I found it via Tom on Co-cure. Presumably 'CVS' is the same as 'CFS' and was lost in translation...

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  9. lansbergen

    lansbergen Senior Member

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    Yes, CVS is dutch for CFS.
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  10. FancyMyBlood

    FancyMyBlood Senior Member

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    This is it indeed- quick find!

    This picture got lost in the translation though:

    [​IMG]

    A rough translation for the non-Dutch speakers since it can't translated by digital software:

    46 ME/CFS patients
    |
    Collection of blood, salvia, hair and stool samples -> measuring cytokines
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    23 patients daily Anakinra injections for 4 weeks ---- 23 patients daily placebo injections for 4 weeks
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    Repeat measurements
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    Questionnaires till 6 months post-treatment
    Firestormm and Valentijn like this.
  11. wilhelm

    wilhelm

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    Prof Jonathan Edwards. I am very happy to see you here!

    Today I called the University Hospital in Bergen to ask them when Mella and Fluge will start with the big Rituximab trial. I was told they have all the resources they needs included the funding (an expencive one) and there will be 140 participants in this study. Now they will use the time that`s needed to find the right candidates. (more than 900 wants to participate in this study, and I`m one of them, crossing my fingers.)
    They will start up in the end of May 2014 and the selection process is underway.
    I`ve been told they will use strict criteria and the CCC, and the participants will receive a letter from their MD. within a month or so. I am just so happy to know that they`re finally ready! :)

    Mr. Edwards. The UK rituximab trial wil start in the end of July and I feel pleased that there are enough Financial resorces and necessary logistics to conduct this study, and together with the Norwegian stydy this will be powerful and hopefully confirmed that the b-cells are indeed involved in this disease. I really feel we`ll get an anwear and deeper insight into the pathophysiology; what causing the immune activation. And I feel so pleased to know you`ll be there as an advicer for the uk trial. Thanks a lot!

    Greetings from Oslo
    Wilhelm
    Last edited: Mar 28, 2014
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  12. Firestormm

    Firestormm Senior Member

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    I did not realise it was starting in the UK at the end of July or that they had raised the £350,000 in their initial target. Is this correct please? Thanks :)
    aimossy likes this.
  13. Mark

    Mark Acting CEO

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    Thanks Jonathan.

    What piqued my interest was the mention I read somewhere (which I now can't find! :rolleyes:) that one of the autoantibodies targets a receptor that is present in (amongst other places) peripheral blood vessels - or at least, it has a role in controlling vasoconstriction. Because of my own symptoms, I'm particularly interested in the peripheral neuropathic symptoms present in a subset of ME/CFS patients, and I've heard it suggested a few times that some kind of impairment of the control of vasodilation and vasoconstriction could potentially explain a range of symptoms and observations noted in ME/CFS - not only POTS and OI symptoms, but low blood volume, peripheral neuropathy, headaches/migraines and more.

    I also understood from the paper that two types of autoantibodies targeting two types of receptors are suggested by the paper, and each targets receptors present in a range of specific locations in the body. Add and combine just one or two more types of autoantibodies and consider the permutations, and overlapping symptom clusters and diverse symptomology in a range of inter-related syndromes seem to me eminently explicable by this kind of mechanism.

    I've been warned before that biological plausibility and explanatory power are not a reliable guide to guessing at what the actual answer may be, and that lots of other possible explanations would also make sense, but this hypothesis does seem to me to fit some of the more curious aspects of the observed epidemiology rather well. Is my very rough layman's understanding of the biological mechanisms proposed here along the right lines, and is there anything else I've missed out that may be particularly significant?
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  14. Jonathan Edwards

    Jonathan Edwards Senior Member

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    I think there is a misunderstanding. The trial plans at UCL are still at the stage of preliminary lab work. All is going according to plan but an actual trial is not going to be starting in July. I too am very pleased to see that the new Norwegian study is getting ready to start.
  15. Jonathan Edwards

    Jonathan Edwards Senior Member

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    Yes, I think there is a plausible story here, but you are right, it needs corroboration before we can know if it is the right story.
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  16. Kate_UK

    Kate_UK Senior Member

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    from http://www.investinme.eu/news.html

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  17. aimossy

    aimossy Senior Member

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    Hi @Jonathan Edwards I was wondering what you made of the Griffiths paper if you had time to make sense of it?
    rosie26 likes this.
  18. Jonathan Edwards

    Jonathan Edwards Senior Member

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    I think the findings are interesting. How to interpret them in terms of a theory of disease is more difficult, although it does seem that there is something going on in terms of immune dysregulation. The key thing we need is comparable studies done in different units to try to get reproducibility. Hopefully that is something that will become a reality over the next fe years. I am hoping to meet up with members of a number of teams at the IiME meeting and probably other meetings later in the year.
    Kati, rosie26 and NK17 like this.
  19. aimossy

    aimossy Senior Member

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    Thanks @Jonathan Edwards Its good to hear. I figured they might be using some different techniques or tools for their findings as well, because I haven't come across other papers quite like this, with what they are analysing. Not that I know much about these things, it was instinctual more than anything. It's good to hear of collaboration with these things:).
    Last edited: Apr 17, 2014
    rosie26 likes this.
  20. Sasha

    Sasha Fine, thank you

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