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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. aimossy

    aimossy Senior Member

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    :)nice to see @Legendrew still with us!.
    @Jonathan Edwards I was wondering what you make of the new research published by Griffith Uni. You may be fully familiar with it allready.
    It is in the latest research section.I can not remember the full title as I write this, I think it was something along the lines of the role of adaptive and innate immune system in chronic fatigue syndrome.
    Any comments on it from people with knowledge in autoimmune diseases and immune system will be much appreciated.
    It is pretty hefty reading and requires so much knowledge to make sense of with respect to what it means as in progress or more information on our immune systems.
    Some of the tables in this study I found later were at the end of all the references.
    :redface:
    rosie26 likes this.
  2. Kati

    Kati Patient in training

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    @Jonathan Edwards I have a 'loaded' question for you.

    Do you think ME is a rheumatologic diorder, and why or why not?
    And in your opinion, what medical specialty would be best suited to see patients with ME

    Thank you.
  3. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I guess you mean this thread.
    aimossy likes this.
  4. aimossy

    aimossy Senior Member

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  5. Jill

    Jill

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    rosie26, Bob, aimossy and 1 other person like this.
  6. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    rosie26 and aimossy like this.
  7. Firestormm

    Firestormm Guest

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    Thanks Jill. You might think of posting as a separate thread and allow others to have a read. I am sure they will be interested. Or I can if you like :)

    Edit: was reading the comments and there is one from Tom Hennessy which kind of freaked me out for a few seconds...
    Last edited: Feb 2, 2014
    rosie26 and aimossy like this.
  8. Bob

    Bob

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    MeSci, Jill and aimossy like this.
  9. lansbergen

    lansbergen Senior Member

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    @ jonathan Edwards How would you classify the peritoneum and pleura B1 cells? Innate or adaptive system?
  10. Jonathan Edwards

    Jonathan Edwards Board Member

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    Re the Griffith study: For some reason I have not been getting flags for PR posts recently so I have not seen this until today. Thanks to those who picked it up. The results are complicated and I will need to go through the whole paper carefully. The markers for immature B cells are different from those used by others so there may be no direct comparison possible. Nevertheless, it will be important to see if there is a consistency here or not.
    aimossy likes this.
  11. Jonathan Edwards

    Jonathan Edwards Board Member

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    To catch up: Is ME rheumatological? I am afraid rheumatological just means something seen by a rheumatologist. Rheumatologists tend to reckon that pain in the arms legs or back is something they should at least be able to handle as a diagnostic issue so it would qualify for that reason. They tend to end up looking after problems most associated with joints but that is not exclusive. Muscle disease is often dealt with by rheumatologists, and also multisystem disorders of immune origin. So there isn't really a clear cut answer I fear!
    rosie26, MeSci and aimossy like this.
  12. Jonathan Edwards

    Jonathan Edwards Board Member

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    B cells are adaptive. I am not sure that humans have peritoneal B1 cells. As far as I know this is a subset found in mice.
    MeSci likes this.
  13. Sasha

    Sasha Fine, thank you

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    I had my first every rheumatology referral last week and was explaining the possible autoimmune connection in the light of the Norwegian findings and meeting with a blank look until I mentioned your name and the UK trial - you're very good PR for us in a consultation!

    Are you able to update us on anything?
    Kati, rosie26, Bob and 2 others like this.
  14. aimossy

    aimossy Senior Member

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    @Jonathan Edwards alerts seem to stop if your watched threads gets full....at least that was the problem for me.
    I had wondered whether you had seen the Griffiths paper or not. The people involved will be at the Invest in ME conference in the UK this year.
    Last edited: Mar 9, 2014
    rosie26 likes this.
  15. Jonathan Edwards

    Jonathan Edwards Board Member

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    I don't really have any significant updates I am afraid, except to say that things are moving forward as fast as bureaucracy allows and I am very much looking forward to the IIME research meeting where I can meet all the researchers we have been discussing properly.
  16. Bob

    Bob

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    @Jonathan Edwards, if you are not receiving alerts for this thread (which has happened to me occasionally), you can easily fix it by clicking on 'unwatch thread' (top-right-hand-corner of the webpage, directly above the first post): After clicking on it once, it will now say 'watch thread', and if you click on it again then it will reset your alerts (for this thread only.)
    Last edited: Mar 9, 2014
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  17. Mark

    Mark Acting CEO

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  18. Jonathan Edwards

    Jonathan Edwards Board Member

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    This is quite a detailed study and the various components do seem to corroborate the idea that there may be antibodies binding to adrenergic receptors in these cases. My main worry is why they only apparently give an immunofluorescent result for one patient. If these were antibodies and they gave fluorescence of the sort indicated then it would seem obvious to screen the whole panel. I would also like to see more detailed images to confirm that the staining pattern was consistent with membrane receptors. It does look as if these patients have some sort of circulating factor that interferes with receptors but I would like to see it repeated by another group before I concluded that this was autoantibody.

    If this finding can be confirmed I think it would add impetus to the search for autoantibodies in ME/CFS. The question would be what target receptor to set up your assays with to look for the antibodies.
    Battery Muncher, Sasha, Jill and 9 others like this.
  19. Bob

    Bob

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    Interesting Rituximab case report, in relation to EBV infection, posted by Ecoclimber:
    http://forums.phoenixrising.me/inde...lt-successfully-treated-with-rituximab.29208/

    Case Report
    Epstein-Barr Virus Infection in an Elderly Nonimmunocompromised Adult Successfully Treated with Rituximab
    Jacob P. Smeltzer, Matthew T. Howard, Wilson I. Gonsalves, and Thomas E. Witzig.
    Case Reports in Hematology
    Volume 2014 (2014), Article ID 641483, 4 pages
    http://www.hindawi.com/journals/crihem/2014/641483/

    I think it's a slightly different recovery time to that seen in ME patients in the Norwegian study:
    Blue, Jill, Ecoclimber and 6 others like this.
  20. FancyMyBlood

    FancyMyBlood Senior Member

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    Prof. Edwards,

    Apparently the Nijmegen ME/CFS centre is starting a RCT to study Anakinra in 46 female ME/CFS patients. Maybe you're not that familiar with this centre, but they're very notorious for their biopsychosocial model. So seeing this study coming from them is pretty huge and suprising.

    I really hope they use strict inclusion criteria though. In the past many studies from this group conflicted with other studies and I suspect many of these discrepancies were caused by using different study populations.

    Anyway, considering they picked a rather specific drug - a so called IL-1 receptor antagonist- do you envison a theoretical model for this drug to be effective in ME/CFS?
    Jill and Valentijn like this.

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