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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Mainstreaming ME Research: The 8th Invest in ME International ME Conference, 2013

Discussion in 'Phoenix Rising Articles' started by Mark, Jun 3, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    View the Post on the Blog

    View the Post on the Blog
     
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  2. Firestormm

    Firestormm Guest

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    Burning the midnight oil again Mark?! :) Nice job. Thanks. Am going to read through slowly...

    Here are some comments posted on IiME Facebook:

     
    filfla4 likes this.
  3. Enid

    Enid Senior Member

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    Oh Wow, thanks Mark, what can one say except it's been a long twelve years to reach this stage. Richard and Pia deserve a hundred medals for their persistence over all these years in the face of the ridicule and nay-sayers UK. Now serious work/discoveries go on unhindered. To my mind Rituximab findings the crux pointing the way to immune abnormalities. Happiness (well you know what I mean) all round.
     
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  4. Kati

    Kati Patient in training

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    Thank you for this, Mark, it made for good reading and great hope for many publications in the next few months.
     
  5. Enid

    Enid Senior Member

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    Must add - I much appreciated the invitation and acceptance by Dr Gerada to attend this conference, and think she spoke very well - another mainstreaming so to speak for us.
     
    Firestormm likes this.
  6. maryb

    maryb iherb code TAK122

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    Thank you so much Mark for your efforts, its really appreciated, hard for those of us who can't focus for too long but are desperate for news. Super info from all the speakers, looks like things are moving faster, we can only hope change is really achievible in the not too distant future.
    Hope that Dr Gerada also learnt quite a lot from this conference too. And has much to discuss in the future - who knows even help change the ways GP's view ME? Pity she's retiring.
    As I've seen 2 consultants in the past year who both recommended excercise there's a long way to go. But my respect to her for attending.
     
    Firestormm likes this.
  7. Valentijn

    Valentijn Activity Level: 3

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    In addition to the horrible CFS videos she starred in, she's also gotten involved in strongly urging Scottish authorities not to adopt the CCC within the past few years: http://www.cathcartmesupportgroup.org.uk/resources/ClareGeradaLETTER.pdf

    In that letter she is strongly opposed to neurological symptoms being accepted as part of it, and pretty much any treatment that isn't recommended by NICE. Her stepping down is an opportunity for progress, if anything.
     
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  8. alex3619

    alex3619 Senior Member

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    • "Dr Donald Staines stands in for Professor Sonya Marshall-Gradisnik. Publications expected in next weeks and months; still finding “sustained, demonstrable, significant impairment in NK cell function”, "highly confident" of up-regulation of T-reg cells; "clear derangement in the immune system...it's irrefutable", and “anyone who suggests that this might be fixed by exercise therapy should probably be de-registered I think”.
    • Dr Amolak Bansal senses a "paradigm shift" towards model of subtle form of autoimmunity in ME; suspects patients' B cells are failing to mature properly and producing low avidity antibodies; lasting response to B-cell depletion therapy may require clearing the viruses responsible in addition to 'rebooting' the B cells."
    Wow. Wish I was there, I would have questions. First, a direct attack on psychobabble and unproven exercise hypotheses, and stronger immune findings. Second, the suggestion by Bansal cannot be overestimated I think.

    Avidity refers to the property of something, often an antibody, to bind to multiple target points at the same time. High avidity is linked to high specificity. If we have LOW avidity then our antibodies will not be specific ... they will target a huge range of targets, attacking almost everything in a way, resulting in the equivalent of many many simultaneous weak autoimmune disorders, all at once. This fits with Maes' research. Its very very interesting. It also explains our huge range of symptoms. As I said, this could prove very very interesting.

    The Bansal hypothesis could potentially explain just about all the findings, including why Rituximab works. However it needs much more development, more studies, more funding.
     
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  9. Sasha

    Sasha Fine, thank you

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    Absolutely superb article, Mark - very exciting to hear not only about this major advances but also how hopeful the researchers feel about everything.

    And I liked your cheeky intermission requests for support! They have a serious purpose, of course - the conference cost Invest in ME a ton of money and Phoenix Rising needs to cover its costs to bring you this kind of reporting and keep the forums running.

    If you haven't donated yet and you can afford to, you really should... :cool:

    And if you're interested in volunteering, I can recommend it! You won't be under any pressure to do more than you can very easily cope with and it feels good to be contributing to the community, and to be part of the effort towards getting treatments and a cure.
     
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  10. alex3619

    alex3619 Senior Member

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    I agree with the general sentiment that a change in attitude about ME research is in the air. I have been sensing that for over a year now. Things are changing, huge advances might be in the near future, the potential for positive change has never been this good.
     
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  11. Sasha

    Sasha Fine, thank you

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    And, ironically, all off the back of XMRV. What a story.
     
  12. alex3619

    alex3619 Senior Member

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    Almost mythic. ;)

    It also doesn't escape my attention that it was the WPI who first noted that we have too many immature B cells.
     
  13. snowathlete

    snowathlete

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    Mark - fantastic article. Thank you so much for attending and then reporting all this in such clear detail. I still have a fair amount of it to read but a few things struck me already.

    Hornig's ‘potential novel candidate’: if this is the exact term she used, then reading into it (perhaps too much) the language suggests that the candidate might be a new strain or member of an existing species of a known group of pathogens. I would imagine that if you find something completely novel that you would know very quickly that it is something completley novel. But if you find a new strain or member of a group, then it is less immediately obvious that it is a novel strain, or species. I could be reading too much into it though - they could easily be saying it like this as they want to be cautious and check its a real finding and not something like contamination.

    The PHD studentship at Norwich is excellent news. We need this. Dr Enlander is doing fellowships in the US at Mt. Sinai and Dr. Newton is working hard to get young people interested in the disease up in Newcastle, UK. I personally see this as vitally important as it not only brings new ideas and youth to the field, but it helps to mainstream the disease. Important to get behind it and encourage more of the same elsewhere.

    Gibsons comment “do your own thing, but talk to other people too” is a very good one. Collaborating even at the level of just talking with other researchers on a regular basis is oh so valuable. I think our doctors are getting much better at this lately and we are seeing benefits.

    Dr Bansal's theory of B-cells failing to mature is an interesting idea. Look forward to hearing/reading more on that in the future.

    Thanks again Mark. I know the work that goes into putting something like this together. It was clearly a monumental effort on your part, from which we all benefit!
     
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  14. Nielk

    Nielk

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    Thank you, Mark for being our eyes, ears, note taker, transcriber, writer, reporter. Reading this article makes me feel like I was there myself. It is always a unique opportunity at these type of meetings that bring our experts together to get a glimpse of what has been going on in the background. I will take my time to read through this treasure trove carefully.

    Thank you!
     
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  15. natasa778

    natasa778 Senior Member

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    What about blood monocyte/macrophage maturation in ME, any research on that? I wonder if these two things could be related somehow ... going out on a limb but want to mention in case you or someone here has any ideas. What I have in mind here is the research by Michal Schwartz and her group at Weizman institute on blood monocyte maturation/differentiation and their recruitment to CNS for repair of damaged/inflamed tissue. If this this process is impaired for whatever reason (including impaired differentiation/maturation of monocytes) there will be neurological dysfunction, possible ongoing gliosis etc ...
     
    SOC likes this.
  16. Mark

    Mark Acting CEO

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    Amen to all of that!

    It was an absolute pleasure to meet Richard and Pia at the conference and I can what was said of them when they received their well-deserved award: down-to-earth and friendly for sure! :) So many wonderful people there.

    And yes, I agree that Rituximab looks to me like the crux pointing at a key detail, maybe the key detail, of the immune dysfunction.
     
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  17. Mark

    Mark Acting CEO

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    Indeed: the problems people will have with her associations and previous stance on ME issues are obvious, but putting all that aside for a moment there's no question she's a superb speaker, with some passionately held core values which I wholeheartedly agree with. Yes, this was definitely a key part of the 'mainstreaming' theme and I think it was a massive gamble and a huge success.
     
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  18. Mark

    Mark Acting CEO

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    Thanks Kati, you're most welcome - I really enjoyed writing it and learned a lot along the way. Looking forward to all those publications as well...
     
    Kati likes this.
  19. Mark

    Mark Acting CEO

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    As above: I really enjoyed it, so you're welcome. :) I know people out there are really hungry for news and it really does get to me when I think about some of the people who just aren't physically able to attend; I know some people who would get far more out of it than me, understand everything better, and just deserve to be there more than me somehow. It's really good to be able to share with them. Still very sad for those who can't even hope to read through a long article like this, but we do what we can...

    As to the whole thing about recommending exercise...I don't know if anything that was said on that subject got through to Dr Gerada, but all I know is that all communication is two way and you have to at least try to listen to what somebody is telling you before you can hope or expect that they listen to you as well. I think it was at least a start, and I learned a lot from her like I said, so it has to be seen as a success.
     
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  20. Mark

    Mark Acting CEO

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    I don't mean to gloss over the negative issues, I agree these are important problems for sure, but I felt it was important to support Invest in ME's brave decision to invite her and emphasise the positives as well.
     
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