Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Transcript of exchange on ME/CFS between NINDS Director Dr Koroshetz.& Dr Lipkin at recent meeting

Discussion in 'General ME/CFS News' started by Dolphin, Jun 16, 2017.

  1. Dolphin

    Dolphin Senior Member

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    Tate Mitchell post on Co-Cure:
    https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1706c&L=co-cure&F=&S=&P=58

    From The Microbe Discovery Project-

    https://www.facebook.com/microbediscovery/posts/1372480439487653

    -----------------------------------

    (The following is an unofficial transcript of Dr. Koroshetz's presentation and exchange between Koroshetz and Lipkin)

    Dr. Koroshetz: Myalgic Encephalomyelitis and Chronic Fatigue Syndrome is an area that's really been completely under-investigated across the country and Francis (Dr. Francis Collins, Director of the National Institutes of Health) is you know, really courageous and went out there and said the NIH is going to change that and so what we're doing is we're having an intramural study that's underway and after this meeting I'm going to go over there and see how they're doing to really try and understand what are the causative features, pathological features underneath this unusual condition where people are completely disabled for decades because of this terrible fatigue and inability to exercise.

    We also, because there's such a poor research environment out there, what we're doing is we have FOA's (Funding Opportunity Announcement) out now to build Centers that will bring new people in, start research going, and hopefully then populate out further to allow folks to submit really high-quality grants to NIH. We're developing common data elements and trying to work with the community which feels terribly ignored and quite angry over this, over the last decades but I think we're making definite inroads there and getting the trust rebuilt

    (Koroshetz goes on to discuss other topics and finishes his presentation and asks for questions)

    Lipkin: First, the nodding syndrome story was terrific. I followed that for years.

    Koroshetz: That's a very strange thing, yeah. We don't know for sure if it's right, but...

    Lipkin: I'm not as exited about the investment in ME/CFS.

    Koroshetz: Uh-huh. Why is that? It's small, right?

    Lipkin: You know, it amounts too, by the time you're done kicking in for various things, it's about eight hundred thousand dollars a center, per year, in direct costs and if you involve many organizations, that is very little to do the science. Is there any chance that that might be increased?

    Koroshetz: Well, there's always a chance, I think the goal was that this was not the solution but the seed to grow the research that could then come in through regular mechanisms or else to kind of add on centers so we can kind of move the field across because, I mean, I think if we can fund three, three or four centers, that's, you know, that's not gonna do it. We really- we need probably twenty across the country.

    Lipkin: Well I don't know if you need twenty centers but if you look and what NIAID (National Institute of Allergy and Infectious Diseases) has done with centers that have been built around emerging infections, they started out around eleven and now they're around six, and you know, but, eight hundred thousand dollars for a center is... it's a challenge.

    Koroshetz: The program is vague but the program is six million a year, that's how much we have.

    Lipkin: I understand that but if you do the math on that, and they take- these are getting very granular but you've gotta kick in three hundred thousand dollars for some cross-center projects-

    Koroshetz: Yes, across...

    Lipkin: You have to have an admin core and by the time you remove that and the icing and everything else it's about eight hundred thousand dollars a year in direct costs, which you know say you split across three or four institutions, it's less than- it's far less than an R01 for each of the investigators. I just- it's- it's- it's a problem.

    Koroshetz: No one ever comes to me and said they gave me too much money. But you're right we gotta move this field, it's gonna take a lot of money

    Lipkin: It's gonna take a lot more money.

    Koroshetz: The budget's gonna have to you know be, ten or twenty times what it is now. Yeah.
     
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  2. Dolphin

    Dolphin Senior Member

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  3. duncan

    duncan Senior Member

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    Unacceptable characterization.
     
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  4. duncan

    duncan Senior Member

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    Thank you for posting, @Dolphin. Regardless, underwhelmed by the entire conversation.
     
    Last edited: Jun 16, 2017
  5. Forbin

    Forbin Senior Member

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    I don't dispute his choice of words, but it really says something about the stigma that pervades the medical community concerning ME/CFS when Dr. Koroshetz characterizes Dr. Collins' efforts to address a currently incurable, life-altering disease of 1-4 million Americans as "courageous." Tending to any other disease with such a footprint would normally just be considered part of the job.

    I do praise Dr. Collins for his leadership in the face of the prevailing medical mindset about ME/CFS. One day, the NIH might want to look into how such a mindset came about in the first place, if only to see whether such damaging outbreaks of hubris / prejudice might more readily be brought under control in the future.
     
  6. HowToEscape?

    HowToEscape? Senior Member

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    It's a super-condensed remark, not a formal description of the disease. What's unacceptable about it?
     
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  7. duncan

    duncan Senior Member

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    @HowToEscape?, fatigue is only one element in a multifactorial disease. Its intensity and even presence varies by ME/CFS sufferer. To boil down a disease characterized by several variables to one or two elements may speak to a fundamental underappreciation of what constitutes the disease.

    I'm sure you are familiar with the recent talks about calcium ions and the possible - albeit unlikely - connection with a calcium channelopathy in a subset of ME/CFS patients. Well, take a look at any channelopathy. Say, potassium channelapathy. That presents with several symptoms, and those symptoms may or may not be present in a given sufferer, and their intensity can very, too. The thing is, no two sufferers can claim the exact same symptom cluster.

    ME/CFS is like that. So when a researcher or clinician with any creds reduces a complex syndrome down to fatigue, and "an inability to exercise", I feel compelled to cry Foul.

    This man is heading research into our disease. I would be more hopeful if he would adequately qualify that disease.
     
    Last edited: Jun 17, 2017
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Mid 90s lipkin mentioned cfs as real, well he's had over 20yrs, obvious he doesnt give a rats. Im sure its just to shut people up, give them false hope. Maybe he thinks cfs is a real depressive disorder??
     
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  9. duncan

    duncan Senior Member

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    It would be nice if he could gather himself, and approach the plate, and let swing with an unambiguous go at what it is he believes ME/CFS to be.
     
    Last edited: Jun 17, 2017
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  10. Forbin

    Forbin Senior Member

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    It's pretty clear that Lipkin thinks the microbiome is a key player. It would seem to make an awfully good place for something to hide in plain sight. Whether that's some unusual pathogen or just an imbalance in the microbiome constituents, or a false lead, is something that can't be ruled out without doing a lot of testing on a lot of people.

    Given the autoimmune diseases that affect the gut (Chron's, ulcerative colitis), and the prevalence of IBD symptoms in ME patients, and the fact that ME patients show similar imbalances in the microbiome as do Chron's and UC patients, the potential for a link between the gut, autoimmunity and a Rituximab effect at least seems worth investigating.

    Also, I believe Dr. Davis mentioned in a recent video that something like 50% of the metabolites in humans are found in (or are coming from) the gut. Perhaps autoimmunity is allowing something normally confined to the gut to get out.

    Personally, I'm most intrigued by the possibility of linkage between the microbiome, autoimmunity and metabolic dysfunction. As has been said, this may be a case of investigators feeling different parts of the elephant.

    Most importantly, this is not a competition. It's almost certainly too big for one person - or one team - to crack on their own.

    As Dr. Davis said:
     
    Last edited: Jun 17, 2017
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  11. AndyPR

    AndyPR I'm a DAD, I Donate, Advocate and Demonstrate

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    I thought with Hustler having been banned from PR that we could put our tin foil hats away, but no, let's ignore the evidence of Lipkin pushing for more funding that would help everyone and take cheap and snide shots at him that don't even make sense.
     
  12. A.B.

    A.B. Senior Member

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    Yes, let's disparage a high profile scientist publicly calling for increased funding for ME/CFS research. That will surely help.
     
  13. dreampop

    dreampop Senior Member

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    No researcher stops to list every single symptom of a multi-faceted disease. For goodness sake, think how long a conversation of CFS would take. And slandering with no evidence (actually evidence to the contrary) - I mean come on.
     
  14. msf

    msf Senior Member

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    I think Duncan was just being a little pedantic (as we all are at times), but I agree with the sentiment that we can´t really do without Lipkin if we want to get to the bottom of what ME is.
     
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  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    He's had over 20yrs or you saying it should be longer?
     
  16. ash0787

    ash0787 Senior Member

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    huh thats odd, I thought Lipkin would be less popular than the president by now
     
  17. AndyPR

    AndyPR I'm a DAD, I Donate, Advocate and Demonstrate

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    I think it's nice that you credit Lipkin with such god-like mental powers that he can individually solve the ME conundrum with minimal funding - I can only assume that you're a closet fan who just feels let down due to your false belief.

    And why would that be?
     
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  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Maybe he's much smarter than we realize. Past history shows many high profile researchers and doctors who have dipped their toe into cfs research dont last long and is usually career ending.

    Either people are smeared professionally or slowly realise that slowly all their funding disappears and they are isolated into the quack area of medicine.
     
  19. AndyPR

    AndyPR I'm a DAD, I Donate, Advocate and Demonstrate

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    What even are you accusing him of now, because I can't make sense of this? That he's stuck with researching ME for so long? That, in researching ME, that his career hasn't been ended? That his ME research is to be seen as being in the "quack area of medicine"?

    I'd certainly agree that a number of people are trying to smear him with all kinds of bizarre claims.
     
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  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Haha.
    Im sure he thinks he does. Maybe why he doesnt persue it as he knows it false illness beliefs. Or like my previous post has said, probably be the end of his research career. He would then be left to charge people a fortune for iv vitamin infusions.
     

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