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Video from Dr. Daniel Peterson´s talk to parliament members in Sweden -- 15 October 2013

Discussion in 'General ME/CFS News' started by Helen, Oct 31, 2013.

  1. Helen

    Helen Senior Member

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    Hi all,

    Dr. Daniel Peterson has recently visited Sweden. Also his research assistant Gunnar Gottschalk travelled with him. Here is a video with his talk to a group of parliament members 15 October 2013, doctors, and researchers. He also gave a more than 1 hour lecture to PWME´s, that was very interesting. Sorry, no video from that.



    Helen
    Last edited: Oct 31, 2013
  2. Firestormm

    Firestormm Guest

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    Thanks Helen. When did he make this presentation? What date? I'm going to listen/watch later. Thanks :)
  3. Helen

    Helen Senior Member

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    Hi Russel.,
    Sorry, of course the date is important. Maybe you can put the date in the headline or whereever you think it is appropriate? At least it is in the text now :)
    Firestormm likes this.
  4. Forbin

    Forbin Forbin

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    Some interesting references to Lipkin's work starting at 15:20.
    Helen likes this.
  5. Kina

    Kina Moderation Team Lead

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    I have added the date to the title. Please note, members can now edit their own thread titles -- see here.
    justinreilly and Firestormm like this.
  6. Helen

    Helen Senior Member

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    Thanks Kina for help and information. Your work is invaluable.
    Kina likes this.
  7. aimossy

    aimossy Senior Member

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    Thankyou so much Helen!
    I appreciated watching this so much.
    (wee victory fist pump)
    Im off to bed a happy!!!!!
    Helen likes this.
  8. Gijs

    Gijs Senior Member

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    The news from lipkin is: there is no news, nothing special has been found. Petersen said that ME/CFS is no longer an psychosomatic disorder in the united stated, this is not true unfortunately.
  9. aimossy

    aimossy Senior Member

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    With respect @Gijs I do not agree that is an accurate conclusion. you are saying lipkin found nothing how do you qualify that statement?
    Also Peterson said we no longer have that discussion regarding this being psychosomatic, specific wording now fading in my head.
    I perceived that him saying that in context meant within research circles/or physicians he is around, not about the general primary care attitude or society in general.
  10. Helen

    Helen Senior Member

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    I think we can be more optimistic about biomarkers as they have been found in blood and spinal fluid. It is first hand information that I got :). Maybe Dr. Lipkin will tell us more during the seminar at Mt Sinai Hospital November, 20. But as results have to be "new" before published, we probably have to wait for a peer-reviewed article.

    Biomarkers will change the opinion. As it did when ulcer became an infectious didease, not a psychosomatic thanks to Dr. Barry Marshall and his collegue from Australia.

    With hope,

    Helen
  11. Gijs

    Gijs Senior Member

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    I hope you are right Helen but i don' t believe it. He has not found special markers good enuff for a breakthrough.
    But we will wait his presentaion and publication. I am not so optimistic. Sorry.
  12. Forbin

    Forbin Forbin

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    One possible significance of the finding of markers that suggest brain inflammation would be that such a finding would be consistent with, if not confirmatory of, Dr. Baraniuk's 2005 study which also found evidence of "a low grade inflammation going on in the brain," as Dr. Komaroff characterized it in 2010.

    A chronic fatigue syndrome–related proteome in human cerebrospinal fluid
    http://www.biomedcentral.com/1471-2377/5/22

    So far as I am aware, no one has independently confirmed Dr. Baraniuk's 2005 study to date, so something along those lines would be very important as an objective marker of the illness.

    If the inflammation reflected by such markers was causative of the symptoms and if the degree of inflammation could be quantified, you would have an objective metric against which to measure therapies. This is a critical step in getting pharmaceutical companies interested in the disease.

    I choose to be optimistic about such possibilities. I think it would be remarkable indeed if, after years of controversy, "myalgic encephalomyelitis" turned out to be exactly that.
    Last edited: Oct 31, 2013
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  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Well he found one or more retroviruses. That could be very important news. I think he probably just didn't promote that finding very much because he didn't want to get caught in an XMRV type circus.
  14. Firestormm

    Firestormm Guest

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    I found the video interesting, and I suppose for an audience of politicians - relatively new to the disease it was necessary to present in this way: but most of the questions came from clinicians I think - and I wonder if we shouldn't now begin to consider holding more detailed medical presentations: focusing more on clinical presentation, treatment and specific research findings - and reduce the amount of the generalising.

    That's not a comment aimed solely at Dr Peterson: I can't help but note many if not most of the presentations that get aired are less specific as are the articles and general 'awareness raising' that occurs.

    I felt there was rather too much reference to non-specifics - even the reference to Lipkins recent presentation - and Dr Peterson's own contributions to it - could have been more specific: and might perhaps have resulted in a better engagement with/from the audience. Anyway, you can't fault Dr Peterson for making the effort.

    Thanks @Helen Hopefully Lipkins work with soon be published and the NK work that Peterson kept referring to, will be replicated and lead somewhere :)
  15. August59

    August59 Daughters High School Graduation

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    I believe Dr. Baraniuk has a paper out from 2008 where he a lot of mis-folded proteins in the CFS cohort and among other things. I'll see if it can't be tracked down.
    Helen likes this.
  16. Helen

    Helen Senior Member

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    I should have told that this talk was one among others in a 3 hour seminar. Here is the program if possible to use Google translater to get an idea of what it all was about http://rme.nu/seminarium-om-mecfs-i-sveriges-riksdag-16-oktober-2013.

    The aim with this seminar was to inform and educate politicians about the situation for this neglected group of patients, so therefore Dr.Petersons talk was more of an international/American stress of the importance of health care also for people with ME/CFS.

    The first doctor talking (O.Z.), presented diagnostics and treatment at one of three ME/CFS clinics in the country. It was a good presentation telling that today there is mostly symptomatic treatments. Vitamin B12 and folates have been found to be useful for many of their patients. (No doubt with MTHFR and/or MTRR mutations that, all but a few people, present in their 23andme tests). They have just started a study on this subject. I don´t know any details but one of the researchers is aware of the genetics involved in folate-B12 metabolism.

    After the doctors talks there was a woman with ME/CFS telling her and others sick stories. She was a parliament member when working, and well-known for many in our country. Her talk was very moving, also according to the politicians.

    The last link in the program is to a panel discussion led by a doctor who is diagnosed with ME/CFS. He is a real good advocate for the ME/CFS group. In the panel where four doctors, also politicians , and members from different parties.

    I got the impression that this seminar will lead to clinics and research centers as they all now are aware of the great implications of this severe disease, and the high costs for undiagnosed patients seeking around for help in the health care system.

    Hopefully this can give a better picture of how Petersons talk fitted in.:)
    Last edited: Nov 1, 2013
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  17. Helen

    Helen Senior Member

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    Hi Justinreilly,

    There are doctors/researchers also in Sweden who were in "the XMRV circus". They are continuing doing research, now analysing spinal fluid from ME/CFS patients. I guess they are very eager to find relevant biomarkers this time. Peterson started a co-operation with them during his visit. Hope it will give positive results.
  18. Helen

    Helen Senior Member

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    Interestingly three of the prominent researching ME/CFS doctors in Sweden are psychiatrists, so they if any should know if people have psychiatric disorders or not. Absolutely not, two of them claimed during the seminar. Maybe Peterson wanted to give support by saying that this is the opinion in U.S. too. In this forum we sadly know it isn´t...
  19. Firestormm

    Firestormm Guest

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    It did. Thanks ever so much Helen :)
  20. alex3619

    alex3619 Senior Member

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