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Event, Newry, N. Ireland: Dr. Jonathan Kerr: ME/CFS Subtypes & Targeted Effective Treatments

Discussion in 'General ME/CFS News' started by John Mac, Oct 16, 2018.

  1. John Mac

    John Mac Senior Member (Voting Rights)

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    DATE AND TIME
    Tue 30 October 2018
    19:00 – 21:00 GMT

    LOCATION
    Mourne Country Hotel
    52 Belfast Road
    Newry
    BT34 1TR

    https://www.eventbrite.co.uk/e/dr-j...eted-effective-treatments-tickets-51366273908
     
  2. Trish

    Trish Moderator Staff Member

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    MEMarge, andypants, Barry and 7 others like this.
  3. Perrier

    Perrier Senior Member (Voting Rights)

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    Dr Kerr is a most decent kind man. Years back I just rang him up, desperate mother that I am. He picked up the telephone himself. I guess I hit on the correct extension. When I described the situation he extended so much delicacy and empathy. I will never forget the call.
     
    merylg, mango, Binkie4 and 22 others like this.
  4. JoanNI

    JoanNI Established Member (Voting Rights)

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    Yes I’m going to ask for his permission to livestream. I had to debate in my head if public live-streaming again was the ‘right’ thing to do by our loyal charity members, as up until now we have been providing this monthly livestream service to our house/bed bound members only.
    I now feel it would be unfair not to share publically when certain monthly meeting, expert speakers are covering such vital issues like PACE and now JK presenting new research findings.

    I think I often react in an overprotective manner to our members sometimes, as without their support and their monetary donations we wouldn’t exist and couldn’t run the charity..... if that makes any sense!
    Fingers crossed he’ll agree now.
     
    MEMarge, Joh, Hutan and 13 others like this.
  5. NelliePledge

    NelliePledge Moderator Staff Member

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    You could always ask those who partake in the livestream for a small donation to cover the cost if there’s a way to donate to your group ionline.
     
    MEMarge, Hutan, Barry and 7 others like this.
  6. Andy

    Andy Committee Member (& Outreach when energy allows)

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    Sunshine3, andypants, Aroa and 17 others like this.
  7. Sasha

    Sasha Senior Member (Voting Rights)

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    A bump for this, which is on this evening and was going to be livestreamed.

    @JoanNI, is there a link, please?
     
    ladycatlover, Amw66 and NelliePledge like this.
  8. Keela Too

    Keela Too Senior Member (Voting Rights)

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    Link will be live here soon:



     
  9. Trish

    Trish Moderator Staff Member

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    I just get video unavailable. Has it started yet?
     
  10. Sasha

    Sasha Senior Member (Voting Rights)

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    I'm getting the same.
     
  11. Keela Too

    Keela Too Senior Member (Voting Rights)

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    Sorry. I don’t know any more.
     
    Webdog, Sasha and Trish like this.
  12. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I'm getting this rather poorly lit video of little green men pulling plugs out and chuckling to each other.
     
    DokaGirl and Amw66 like this.
  13. Brian Hughes

    Brian Hughes Senior Member (Voting Rights)

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    I am getting 'video unavailable' also. Not to worry. Perhaps the recording can be posted later for posterity. I look forward to it.

    Thank you @JoanNI and all for organising this.
     
  14. Sasha

    Sasha Senior Member (Voting Rights)

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    Maybe you're on the Google ghost game I was just playing (on the Google home page today). :)
     
    ladycatlover likes this.
  15. NelliePledge

    NelliePledge Moderator Staff Member

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    Oh well hopefully catch up with the video later on. Gave up trying to find a link now watching the Bake Off final
     
    ladycatlover, MEMarge and Trish like this.
  16. Alvin

    Alvin Senior Member (Voting Rights)

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    I couldn't resist
    [​IMG]
     
  17. Gday!

    Gday! Established Member

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  18. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I listened to the video. I am afraid I am very disappointed. Dr Kerr's description of the background immunology is vague, muddled and in places wrong. The claim that there is new evidence for EBV involvement does not fit with what I have seen of studies over the last 5 years. The emphasis on psychological stress seems ungrounded and unhelpful. I think this is weak science that is a distraction from the need to get some high quality research going.

    I think it is particularly unfortunate that he ends up effectively recommending anti-viral drugs, which trials so far indicate do not work. The last thing we need is for parents to be searching out private practitioners who are prepared to treat children and adolescents with drugs like this without proper evidence of effectiveness and safety. I think we all have an obligation to ensure we do not encourage irresponsible practice.
     
    Sid, merylg, JoanneS and 7 others like this.
  19. Andy H

    Andy H Established Member

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    You suggest that using anti-viral drugs to treat viral reactivation is irresponsible.

    Non ME children are treated routinely with anti-virals such as acyclovir, for varicella zoster virus, herpes simplex virus etc.

    Your statement does not reflect the widespread use of these drugs with children outside the area of ME, the lack of any concerns as a result of such use or the positive anti-viral experiences of people focused on ME such as Professor Montoya or others such as Lerner.

    Either way, please would you explain how you would suggest treating reactivated herpes viruses if not with the recommend drugs designed to treat herpes viruses or if you saying that viral reactivation should not be treated at all, why not?

    Thanks
     
  20. Trish

    Trish Moderator Staff Member

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    I found the talk confusing. Was he saying ME/CFS is an autoimmune disease? He seemed to skirt around this, talking about similar symptom patterns to some autoimmune diseases and EBV being implicated in some. He also included Fibromyalgia as an autoimmune disease and talked about autoantibodies. I don't think I've heard any other researcher saying there is evidence that it is autoimmune.

    And he kept talking about as though ME/CFS was the same as viral reactivation. I haven't heard that one before either. Didn't Ron Davis find no evidence of viral reactivation?

    And he went on a lot about psychological stress being involved in viral reactivation, which may be true, but what has that to do with ME/CFS?

    I'm left more confused than enlightened.
     
    JoanneS, Webdog, andypants and 3 others like this.

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