Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Interview with Ian Lipkin: posted

Discussion in 'Latest ME/CFS Research' started by Mindy Kitei, May 11, 2014.

  1. Mindy Kitei

    Mindy Kitei

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    I just posted my interview with Dr. Ian Lipkin. He is very candid about his ME research.

    Mindy Kitei
    CFS Central
    cfscentral.com
     
  2. SOC

    SOC Senior Member

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    Hey Mindy,
    You might want to correct a repeated spelling error in the article -- it's gastrointestinal tract, not "track". :)
     
  3. Nielk

    Nielk

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  4. Countrygirl

    Countrygirl Senior Member

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    Oops, sorry Mindy, I missed your thread despite a search. There are now two threads.:bang-head::ill:

    I seem to be having to use :bang-head: rather a lot these days. :cry:
     
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  5. Kina

    Kina

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  6. Simon

    Simon

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    [​IMG]
    Fantastic inteview Mindy, thank you, and thank you to Dr Ian Lipkin too.

    You can give to Lipkin's microbiome study - or perhaps that should be "our" microbiome study at www.microbediscovery.org (Facebook).

    Not for the first time, Ian Lipkin urges patients to contact their representatives and put pressure on Congress to fund our illness:
    Llewleyn King recently advocated exactly that, patient organising action on Congress: Llewlyn King's ME/CFS manifesto

    Mindy's interview CFS Central: Candid Conversation with Dr. Ian Lipkin
     
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  7. garcia

    garcia Aristocrat Extraordinaire

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    My candid thoughts below on a very candid interview!

    Lipkin (talking about autism): "The only thing that seems to work with these kids is applied behavioral therapy."

    Good grief, this guy needs some serious educating. He clearly hasn't heard of the biomedical movement in autism and all the successes they've had.

    Lipkin (talking about CFS): "One of the challenges is that there aren’t enough people doing credible research in the field."

    As opposed to say Alzheimers, MS, ALS, RA where there is an abundance of research dollars and people, but zero results? What makes Lipkin think he's going to get results within the same orthodox paradigms as those other diseases in which research has been an abject failure?

    Lipkin: "The problem is with chronic fatigue syndrome, and I feel bad about this, these are the most vulnerable people. They don’t have the energy or the resources that are needed to go and lobby. Whereas if you have a child and you’re otherwise healthy, and you’re looking at this child every day, then you’re motivated, you’re strong, you’re powerful"

    Agree 100% with the above. Been saying that for years. As a patient community we are screwed if we go down the advocacy route because we have no-one to advocate for us.

    Lipkin: "There are some people who have herpes virus infections. We can define those, we can detect those. Those people should be diagnosed because they can be treated now. The same thing is true with Borrelia infections. We’ve created a series of multiplex assays to detect those infections…. And those people can be treated, and maybe that takes care of 10 percent of people."

    I think he is really naive in how easy these infections are to treat. I know at least 2 of the major infections I have, but it doesn't help me much because I am unable to treat them due to being so sick. It isn't just a question of identifying infections, dolling out a prescription and treating the infections. It is way way way more complicated than that. Treating intra-cellular bacterial infections (e.g. such as Lyme and CPn etc.) can take years, even in relatively healthy people, let alone in really sick people like us with hyper-active inflammatory responses where treating infections can make us worse (sometimes much worse) not better.

    Lipkin: "We deserve the same kind of work that I do for the Saudi government, trying to figure out the origin of MERS or anything else."

    When it comes to investigating something like MERS I trust that Lipkin would do a good job, at least as good as anyone else on the planet. That's his speciality. When it comes to a complex chronic multi-component illness such as ME, frankly he doesn't have a clue.

    Lipkin: "This is like cancer…. Some people need radiation. Some people need this drug, or that drug or the other drug.... It has to be personalized medicine."

    Cancer is a multi-billion dollar worldwide industry. If ME is like cancer and needs individualized treatment (and who would disagree with that), where exactly are the billions of funding required going to come from?

    Lipkin: "Believe me, we are doing everything we can. It’s an incredibly depressing, humbling experience. It’s so much more difficult than 99 percent of what I do day-to-day."

    This doesn't bode well. If his work on CFS is more difficult than 99% of what he does day-to-day, his chances of success are minuscule.
     
    Last edited: May 11, 2014
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  8. Esther12

    Esther12 Senior Member

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    Lipkin does speak to patients with a level of respect which is refreshing for CFS (at least from researchers with some real power).

    I've got no idea about the politics of funding for research in America... I'd like to see more criticism of poor quality CFS research to move things forward though. While I'm most concern at the harm done by poor quality psychological work, I appreciate Lipkin's willingness to be critical of virological work he thinks is poor of over-hyped, especially in a direct manner to a patient who seems more supportive of it.

    Thanks to Mindy for the interview.
     
    Last edited: May 11, 2014
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  9. Forbin

    Forbin Senior Member

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    Yes! I've often thought that it would make sense to do some kind of analysis not just between controls and patients, but also between controls, patients and "recovered" patients to see what the differences were between all three populations.

    One of the problems with just testing healthy controls and patients is that patients might have been distinctly different from controls before they became ill. Patients who have "recovered" might have simply returned to a pre-illness "balance" that is distinctly different from that of both patients with active disease and healthy controls.

    Excellent interview, Mindy.
     
    Last edited: May 11, 2014
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  10. biophile

    biophile Places I'd rather be.

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    http://www.cfscentral.com/2014/05/candid-conversation-with-dr-ian-lipkin.html

    This was generally interesting. A process of broad investigation and discovery to identify specific candidates for narrow searches, versus, beginning with narrow searches from the outset. I still think money also needs to go towards confirming or rejecting the specific main theories that have cropped up over the years.

    Re whether certain individuals at the NIH and CDC believe CFS is "psychosomatic": I think Lipkin's view was interesting, but I do wonder if he interprets "psychosomatic" in the pejorative lay sense more than the medical sense. Those individuals mentioned may not dismiss CFS, but some may lean towards biopsychobabble. This part was refreshingly blunt from Lipkin: "I knew Bill Reeves. He was a problem. But he’s no longer on the face of the earth. So that’s not an issue."

    I have not read Osler's Web, and misinterpretation is possible, but people can also forget what they said in the past.

    In response to the observation that not enough biomedical research is being done for ME/CFS, it has been claimed that biomedical research proposals are rejected because of poor quality, not because of any bias. Many of us suspected this was a dubious explanation, and a few scientists (e.g. Kerr and Friedman?) have already spoken out again this. Now we have Lipkin, one of the most respected scientists in the world, saying that it happens to him too.

    Much of the other text I wanted to quote basically boils down to blaming Congress rather than the NIH for the poor state of funding allocation, and that we need a champion in a Congress, the latter which don't listen to scientists but voters and lobbyists. So, Lipkin insists on grass-roots lobbying but understands we are a vulnerable group because we do not have enough people looking out for us with enough resources.

    More evidence that the ME/CFS research field is in a state of disarray, not merely of smaller size.
     
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  11. Sasha

    Sasha Fine, thank you

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    Terrific interview - highly recommend it. We've got both Dr. Lipkin now and Llewellyn King telling us to push Congress to increase NIH funding.

    I'll be donating again to the microbiome study today (the link is in my signature below, for anyone who wants to join me!).
     
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  12. natasa778

    natasa778 Senior Member

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    That is not THE solution either, as allocating more money through Congress could easily end up going to 'psychosomatic research' (from what he was saying). This is what happened with autism research funding allocated through Congress. Millions were allocated and those millions were flushed down the drain, given to flat-earthers to fund studies looking at where exactly the World falls off the cliff...
     
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  13. justinreilly

    justinreilly Senior Member

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    I sent a letter to Prof. Lipkin. I will see if there is a response and if so will let you know if he says it's ok to repeat.

     
    Last edited: May 13, 2014
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  14. Esther12

    Esther12 Senior Member

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    I don't think it's strange that money was found for XMRV: that could have been a new retroviruses infecting humans and causing ill health - there was no way they could afford to not be thorough there. That money was not for 'CFS', it was for 'XMRV'. That's not to say that, if CFS was there number 1 personal priority, I do not think that this could improve the situation on funding - it's clearly not that important to those with real power and influence.

    I don't pretend to know a lot about the politics of CFS in the US, but the main senior person who I am confident was bad for CFS was Reeves, and Lipkin seemed to call him out on that.
     
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  15. peggy-sue

    peggy-sue

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    I'm concerned about the use of "recovered" subjects as comparisons.
    Very concerned.:cautious:
     
  16. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    I agree with your sentiment here (ie the content of the letter). I don't buy much of what Lipkin is selling. His statement re Reeves is very much misdirection. He knows he is on pretty safe ground when he puts the boot into Reeves.

    Reeves was very much the convenient cat's paw. Reeves is gone, but the culture remains. Many more monsters in the cupboard, some don't look like monsters.
     
    Last edited: May 13, 2014
  17. Hip

    Hip Senior Member

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    Are you suggesting that Lipkin should not only battle to get funding for ME/CFS research, but also at the same time, somehow change the entire scientific paradigm which is the basis of scientific research around the world !?!
     
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  18. Bob

    Bob

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    A fascinating interview, I thought. Some of Dr Lipkin's comments are controversial, and certain to frustrate some of our community. But I liked the frank style of the interview. Perhaps he shouldn't have got involved in a discussion about politics, but they seemed to be his honest views. Not many academics open up like that and are prepared to engage in such a way with our community. And for such a high-profile scientist to take the time to engage with us, I think speaks volumes. I think it's clear that he's on the side of ME patients.

    Re the politics, as others have said, he can't slag off people in government office, even if he wanted to, because he's got to work with them day-to-day. And he isn't fully aware of the history of ME, so we can't expect him to know everything. (I know that many in our community don't agree but, from what I've seen, I agree with him about Beth Unger. She's not perfect, but I've thought for a long time that she's heading in the right direction, if pitifully slowly.)

    But looking forwards, rather than backwards, it seems that he is lobbying to get more funds for ME research, and lobbying to get obstructing referees removed from grant funding boards. No other researcher in our community has that sort of direct influence or power.

    Politics aside, Lipkin clearly wants to get stuck into ME research, and any research he does will be in addition to whatever else is going on. It seems obvious that it's impossible for him to chase every small lead there is in terms of various tissues or viruses to investigate. Many scientists have their pet theories, and they usually don't lead anywhere, and Dr Chia's not the only scientist with 'the' answer to ME. So Lipkin's got to do things his own way. And it's not as if he's not able to get results using his knowledge and expertise. If Lipkin can investigate Peterson's samples that would be interesting. And it would also be good if he could investigate Chia's samples, but there was no talk of that in the interview.

    He's such a huge figure in the scientific world, that I can only see it being beneficial if he's lobbying the NIH/CDC/HHS etc on our behalf. And if he's keen to get involved in ME research and to carry out huge new research investigations, then what's not to like? It seems like quite a major gift to our community.
     
    Last edited: May 13, 2014
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  19. geraldt52

    geraldt52 Senior Member

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    "could easily end up going to psychosomatic research"? Given the history, I'd say will end up going to psychosomatic research.

    Please, everyone, donate...ask others to donate. We have only 350 donors out of a community of millions. The government is not going to help us. Let's not fail to seize this opportunity to help ourselves.
     
  20. garcia

    garcia Aristocrat Extraordinaire

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    I'm saying that the current medical-scientific paradigm is broken. It doesn't work for complex modern chronic multi-factorial diseases such as ME. Re: Lipkin - I don't expect someone who has spent their entire life within a paradigm, and has been highly successful, to suddenly abandon that paradigm.
     
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