Sunday, May 11, 2014

Candid Conversation with
Dr. Ian Lipkin

Ian Lipkin, professor of epidemiology and neurology at Columbia, recognized for his work on SARS and West Nile virus, science consultant to the film Contagion, has been at work on what he admits may be his toughest project to date: research into ME.  From the Chronic Fatigue Initiative, Lipkin received funding, and his work so far has shown cytokine activation in the disease.  Now he's in need of a million dollars for ME research into the gut biome and is making his plea directly to patients. To donate to the research, click here or here. 

Dr. Lipkin and I had a candid conversation about his ME research, the government’s thinking when it comes to ME and how to secure more research dollars. 

Mindy Kitei:  Where can people donate to your research?

Dr. Ian Lipkin:  Donate to our research. We’re all in the same boat.  We’re trying to find solutions to an important problem, so I want to be very clear to your readers that it is their project. It was organically developed in response to their needs, and their wishes, and we’re eager to serve.

The idea here is that we believe there is an infectious trigger... that initiates immune activation and results in a number of different abnormalities, which results in turn in this debilitating fatigue and cognitive dysfunction, and all the other symptoms that are associated with this disorder. Very similar to what you have with a low-grade but persistent infection, typically with a virus, but can also occur with some bacteria. 

The idea is to find out what sorts of agents might be implicated in this syndrome.  We have looked at peripheral blood mononuclear cells, where we haven’t found anything as of yet, although we’re still looking, but the area that is obvious to consider is the gastrointestinal tract because the gastrointestinal tract is so important in modulating immunity and has been implicated in autoimmune disorders, not only those associated with gastrointestinal disorders but outside.... 

Kitei:  How is your gut research different from other researchers looking at the gut, including Dr. Chia and Dr. DeMerlier?

Lipkin: We have a very different approach than most people.  There are people who are experts in viruses or bacteria or fungi, there are people who focus on specific microorganisms because they’re persuaded that this particular microorganism or that microorganism is the one that’s important.  We approach this with the notion that this is really discovery.  We don’t have any preconceived notions about what we’re going to find and as you’re probably aware, our group has expertise in looking for bacteria, viruses and fungi. Our approach will be comprehensive, it will be vigorous, it will be quite deep. 

We will use methods designed specifically to find viruses, fungi and bacteria, so as long as it falls into one of those three categories, we should be able to find it in the materials we collect and analyze.

Kitei: Which is in stool?

Yes. We are not going to do muscle biopsies or liver biopsies.  Believe it or not, but I’ve been in meetings where people have talked about doing brain biopsies, which shocked me.

Kitei:  Unless you had cadavers.

Lipkin:  Well, cadavers are very difficult place to look for materials, unless somebody has an acute illness. People have been doing that in MS and other disorders. So we do a lot of cadaver research.  But I’m not aware that there’s a large biobank of people with chronic fatigue syndrome from whom one could get such materials even if we wanted to pursue that. 

Our intent is to look at people who have active disease and people who’ve recovered and to look at their stool and their oral pharynxes as well and to test whether or not we can find differences in the populations of bacteria, viruses and fungi in their mouths and in their fecal flora.  Whatever we find by way of differences between populations, we will test for the relevance and the acuteness of the infection by using serology, by testing for the presence of antibodies in the blood that will react with those specific agents. 

Kitei:  Is it possible that by the time you get to the stool the pathogen is not detectable? I believe Dr. Chia has said that tissue is a more effective place to find pathogens....

Lipkin:  Depending on whom you speak to, people will tell you the culprit is a herpes virus in peripheral blood mononuclear cells, someone else tells you it’s an enterovirus in the wall of the bowel, other people tell me that it’s a stealth virus that’s lurking in the central nervous system.  I mean there are many hypotheses that people have put forward.  To get biopsies from the intestine of an individual is not something we can easily do.  That requires people who are willing to have that done, number one. Number two means that you have to collect those biopsies.  And third, I don’t know if an institutional review board would allow intestinal biopsies on people who don’t have intestinal complaints. That would be very difficult certainly at Columbia....

Kitei: But there are many people who do have intestinal complaints.

Lipkin:  But there are many people who don’t who also have chronic fatigue syndrome.... I’ve met the man [Dr. John Chia] at a conference in San Francisco.... I've been down this path many times before when people who are clinicians try to shift and do certain types of laboratory work. And it's always a concern for me when they make a report of this type because I don’t know what kind of controls he uses to make certain he doesn’t have artifacts.  We went through this with [Dr. Andrew] Wakefield, as you may remember, with MMR and autism.  We went through this with XMRV in prostate cancer and then in chronic fatigue syndrome….

It seems very unlikely that if you have a virus which is growing inside the bowel that as you shed the lining of the bowel—which happens continuously—that you’re not going to have viral particles that will also be present in feces.  We’ve done so much work with fecal material from bats to camels to people to gorillas that I’m confident that if there’s something present within the bowel that we will be able to see it as long as it reaches a certain threshold for concentration, and that threshold for concentration we know, and most people don't know that number.     

Kitei:  How many subjects will you have in the study?

Lipkin:  At present we're not nearly where we need to be in terms of funding to do what we need to do. Ideally we would like to have a minimum of 200 subjects.  My view on chronic fatigue syndrome is that there are likely to be multiple pathogens that are implicated and when you do discovery, sensitivity is not as good as when one uses a specific assay.  Specific assays exclude all other material that may be present in a sample, and sensitivity frequently is an order of magnitude or 10-fold higher than the discovery methods that we use.  So all we need is to find a couple of candidates, and then we’ll develop specific assays and then go back into the rest of the population to see whether or not we can chip away at the problem. 

I would not be at all surprised if there were multiple agents implicated in chronic fatigue syndrome.  But if we can identify 10 percent of people with herpes viruses and another 10 percent with Borrelia pathogens and another 10 percent with enteroviruses, and so forth, we can develop specific tailored approaches for dealing with these problems.  It’s no different from dealing with cancer.  In [1971], you had Nixon declaring the war on cancer as though it were a single agent and we now know that even if you take adenocarcinoma of the lung, there are very many different variations.  Some are associated with very specific mutations and if you can exclude or include those mutations you can tailor therapy specifically for an individual that’s nontoxic and highly effective. 

And my thought is that there is final common pathway for chronic fatigue syndrome, but there may be multiple triggers.  So our objective is identify as many potential triggers as we can, and then begin to move toward some sort of clinical trial so that we can help people with specific management recommendations. 


"Vulnerable people who do not have others looking out for them are most at risk for not getting the science that’s needed to address their problem."


Kitei: When is your study on biomarkers coming out?

Lipkin:  Mady Hornig spent last weekend with Dan Peterson in Incline Village pulling together a study on spinal fluid and that is the first one that’s going out for publication.

The second one, which concerns cytokine measurements in chronic fatigue syndrome in peripheral blood will follow that probably by about a month.  We’ve presented that data in public forums, because we felt it was important to get out....  But the actual publications in print will take a few more months.

Kitei:  And in what publications?

Lipkin: No one knows.  You submit and then move on. 

Kitei: Did you look at natural killer cells?  That seems to be one thing that most patients have a problem with.  Either too many that are not functioning, or too few. 

Lipkin:  No, we have not.  It would be very difficult to use that as a biomarker.  It’s very complicated laboratory research.  We’re hoping to develop a biomarker that going to be inexpensive and simple, rather than requiring people to culture cells.  I’m optimistic that we will get there, but that doesn’t really tell me why the NK cells are abnormal or why the cytokine patterns are abnormal.  That's what I'm focused on. Identifying biomarkers is going to be useful primarily for persuading insurance companies that patients are not malingering.  I have no doubt that people are not malingering, but that’s not going to tell me necessarily why people are getting sick and what to do about it. 

So our focus is on the origin of the syndrome.  That's the place where we can make the largest contribution. 

Kitei:  I’ve read that you found in 85 percent of pooled samples possible evidence of retroviral infection, but that you believe that’s not related to ME. Why do you believe it’s not related to ME?

Lipkin:  We also find it in controls.  We need to find something that’s going to be specific.... All the studies we do are very well controlled because we're involved with clinics where they see hundreds of patients a year, like Nancy Klimas, Cindy Bateman, Dan Peterson, Jose Montoya and Sue Levine.... These are the people we have selecting our patients and controls, collecting materials and working very closely with us.... We decided to go with the blue-chip group so that there's no question when they send us a patient....

Kitei:  Are you going to be using the Canadian Consensus Criteria?

Lipkin:  We use all the criteria: the Canadian Consensus Criteria, the original Fukuda criteria, the criteria used by the programs run by Nancy [Klimas] and Dan [Peterson], Tony [Komaroff] and others, we use the most stringent criteria. We also try to emphasize whenever possible those people who give us a history of a viral prodrome because that also suggests that these people have the agent present. And whenever possible we try to get people who are having an acute relapse…. A paper coming out in the not to distant future about which I’m very encouraged has to do with RNA profiling host response in those with chronic fatigue syndrome and controls and these are individuals from the original NIH XMRV study.

Kitei: And what have you found?

Lipkin:  I can’t say yet.  I’m not trying to be coy.  We’re still in the process of analyzing it.  It’s an enormous amount of information.  When you start doing genetic sequencing, it can take months to analyze the data.  It’s like building a house.  So, at the end, when you’re slapping on the paint and polishing the floors, it goes very very quickly, but before that it just looks like chaos.

Kitei:  German researchers found Epstein Barr virus-encoded small RNA DNA in 11 out of 20 patients, compared with 3 out of 20 controls. 

Lipkin: That’s such a small number of patients that I don’t think it’s meaningful.

Kitei:  Is it something that should be repeated with more patients?

Lipkin:  It’s certainly interesting. There’s so much scatter everywhere.  One of the reasons why we’re doing it the way we’re doing it is that we don’t go into specific bias. We think what we to do is the same thing that has been done for discovery in any number of diseases.  The patients deserve that.  The field deserves that.  One of the problems we have is to a carpenter with a hammer everything looks like a nail.  We don’t have that approach.

Kitei:  Do you believe ME is contagious and/or infectious?

Lipkin:  I don’t know that, but I do think there's an infectious trigger.  It’s ultimately going to be a gene environment interaction, and we’re going to have to explore the genetic susceptibility issues as well as the environmental triggers....  

Kitei: Do you believe this is a hit-and-run agent?

Lipkin:  In some cases it may be. I don’t know that that’s the case.  We haven’t proven anything as yet, except that we know that some people have an indistinguishable illness that reflects infection with borrelia species or herpes viruses.  If you talk to Konstance Knox, you think everything is HHV-6.  Some people think it’s HHV-6, some people think this is EBV, some people think it’s Borrelia, some people it’s another bacterium, some people think it’s a “stealth” virus, some people think it’s a retrovirus, there are a number of possibilities.  They can all be right, and they can all be wrong. 

Kitei: Following Koch’s Postulates, have you considered finding an animal model for ME?

Lipkin:  It would be very difficult to develop an animal model right now.  I’ve been dealing with this for a long time in autism.  It’s a disorder in which people don’t make eye contact.  What is eye contact in a rodent? 

Kitei:  There's some researcher [Dr. Robert Naviaux] who did this in autism recently and came up with a drug [Suramin] developed in 1916 to treat river blindness that reversed the autism in mice.

Lipkin: I’m not persuaded.  The only thing that seems to work with these kids is applied behavioral therapy.  What you’re doing there is starting very very early and trying to socialize them….


"I have been in competition now twice to get funded, and the people there who reviewed me gave me abysmal scores. And the critiques of my work were unfair, and one of the people who critiqued my work said, in fact, that this is a psychosomatic illness.  I was floored."


Kitei: If you did find the cause of ME, would you become involved in finding effective treatments?

Lipkin:  Yes. That’s job one.  We’re not in this for intellectual interest.  We’re trying to make differences.  I’m a physician.  I saw some of the first cases of chronic fatigue syndrome in the early 1980s when I was at the University of California at San Francisco, referred to me by Dan Peterson.  It’s been a long time.  We need to bring some clarity.  

Kitei:  There’s been so little funding. You have Dr. Fauci’s ear.  He has talked about this disease being psychiatric.  That was documented in Osler’s Web.

Lipkin:  No, no. I don’t think that’s fair.  I know Tony Fauci extremely well.  And there’s another thing people misquote.  [People misquote] William Stewart, surgeon general in 1967, when they said [that he said] that the era of infectious diseases is over. There’s no evidence that he ever said that.  My esteemed colleagues... continually misquote him.  I’ve never heard Tony Fauci say anything like that [that ME is a psychiatric disorder]. The fact that it's in Osler's Web doesn't mean he said that. 

Kitei:  She's [Hillary Johnson] a good reporter. Have you talk to Dr. Fauci about your theories [of ME]?

Lipkin: In fact I have spoken to him about it. That's why I can't understand why people think this is the case.  

Kitei:  There’s no federal money for ME research.  Year after year there’s no money, and more is given to male-patterned baldness than to this disease.

Lipkin:  Let’s backtrack and examine how these decisions are made.  First of all, the National Institutes of Health gets money from the Congress.  The Congress will mandate what it is they want people to do.  The Department of Defense has funding for autism, for a number of other things that people push, including, as you mentioned, some disorders that are specifically male. 

One of them is prostate cancer.  The Department of Defense has been running programs on prostate cancer for decades. Why?  Because men in the position to make those decisions have wanted research focused on prostate cancer, so they allocate money for prostate cancer. The NIH doesn’t allocate money for specific disorders.  Those kind of monies are allocated in response to congressional mandates. 

Now, Tony Fauci doesn’t have the ability to start a brand-new program on chronic fatigue syndrome.  This is what I want to do.  He’s continually being pushed to work on influenza, HIV, bio-threat agents, things of that nature. And there is a portfolio for chronic fatigue syndrome, which, as you said, is quite small.  There are not many people working in this field. 

I have been in competition now twice to get funded, and the people there who reviewed me gave me abysmal scores.  And the critiques of my work were unfair, and one of the people who critiqued my work said, in fact, that this is a psychosomatic illness.  I was floored.  I protested, and for reasons that are obscure to me this same individual wound up back on the study section, and I got a similar unfundable score.  Am I upset about this? Absolutely.  Do I think Tony Fauci knows about this?  No. And if Tony Fauci were to find out that people said that he claimed this is a psychosomatic illness, he would deny it because he doesn’t believe that’s true.  I’m sure he doesn’t believe that’s true....   

[In the first set of critiques I was also told] that everybody knows that this is a herpes virus infection of peripheral blood mononuclear cells so there’s no reason to look at the gut. This is the nature of study sections.  You can’t control what people are going to do when they get on….  They do the best that they can, but that doesn’t mean they’re up to the task and it doesn’t mean that they’re appropriate. 

One of the challenges is that there aren’t enough people doing credible research in the field.  Period.  If there were more people, you’d have better study sections, better work and we’d be further along in terms of sorting out this problem.

Kitei:  But it’s a vicious cycle.  If you can’t get funding—

Lipkin:  It’s not the leadership of NIH.  That’s not the problem.  The problem is that you need a champion in Congress who's going to go ahead and say, I want money allocated for chronic fatigue syndrome research.  That’s the way it gets done.  That’s the way HIV got done, that’s the way breast cancer got done, and so on.  It has to be somebody who has some ability to influence the purse. And if that happens, the NIH would only be too happy to take the money and to allocate it and get the best science done.  That’s all the NIH cares about.

Kitei:  That’s a crazy way of doing things.  If anybody should understand this disease, it’s scientists.

Lipkin:  But they don’t listen to scientists.  Congress doesn’t listen to scientists.  They listen to people who vote for them. I was very involved in getting the autism bill passed, in the late 1990s and early 2000s.  And it was two parents and a few of their friends who went down and lobbied on Capitol Hill and pushed through this first bill that created the autism Centers of Excellence.  And it was the parents who did it.  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 and you go down there and you complain, and push and squeak until you get the resources that you need.  The other people who have the same problem are people with mental illness, and I am not saying by any means that chronic fatigue syndrome is mental illness.  I’m just saying that these are also vulnerable people. Vulnerable people who do not have others looking out for them are most at risk for not getting the science that’s needed to address their problem.  

But the solution for that is for the healthy ones, the people who have recovered, or relatives and friends of those who have these disorders need to push.  I talk to everybody.  I do everything I can to promote this.  When people who are scientists tell me they don’t believe this is a real disease, I refute it, I refute it with facts, I talk to the media, but I don’t have any traction with Congress because I live in a blue state.  And New York is in favor of scientific research and increasing the NIH budget.  And the problem is, when you go into the South and the Midwest, you don’t have that support.  The budget for the NIH has been cut dramatically.  

I’m on the advisory committee for Francis Collins, and I can tell you that Francis Collins, the director of the NIH, believes that chronic fatigue syndrome is a problem.  He would love to have the resources to allocate.  The resources are going to have to come because people push their representatives to provide that kind of support.  That's the only way it's going to happen. I’m sorry about that, because believe me, the last thing I want to do is begging for dimes and quarters for my work....

Kitei:  You mentioned someone on the study section said this was a psychosomatic illness. Can’t this person be educated? 

Lipkin:  I think this person has to be eliminated.  I pushed to have him eliminated permanently from this study section.  I’m not going to tell you his name because it’s not appropriate, and I’m not supposed to know it…. 

Kitei:  That’s one person, and it would be great to get him eliminated, but there’s a basic feeling in the government—certainly in the CDC—that this is a psychosomatic illness.... 

Lipkin:  I don’t think that’s true.

Kitei:  I believe it is true at the CDC.

Lipkin:  I don’t know who at the CDC you mean.

Kitei:  Certainly [Dr. Beth] Unger, but she’s just taking orders.

Lipkin:  She’s in the process of doing biological research.

Kitei:  Have you read Osler’s Web? I would urge you to read it.

Lipkin:  No.  I’ve been given three copies of it.

Kitei:  Well, maybe you should read it. Maybe someone is trying to tell you something.

Lipkin:  I’ve read Absence of Evidence with the autism stuff and so forth.  I’m sure people mean well.  Hillary [Johnson] is a very nice individual.  I like her.  But I’ve also had people tell me that they’ve never said the things she claims they’ve said.  This is a problem.  I know some of these people.  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.  And Beth Unger does not believe that this is a psychosomatic illness.  She just doesn't. And Bill Switzer doesn’t believe that this is a psychosomatic illness. So I don’t know where people get this.  And [CDC Director] Tom Frieden doesn’t believe this is a psychosomatic illness.  As I’ve said, the best way to get results is to organize a grass-roots campaign to push the Congress to allocate money for chronic fatigue syndrome research and treatment. That’s really the way to go.

Kitei: But then they do psychosomatic research, personality disorders.... Beth Unger’s [name] has been on the studies that do this.  Or they do an exercise study, and instead of doing a two-day test—because it takes two days to see the problems in the recovery period—they only do a one-day test because they say it’s too hard on the patients. But patients are willing to do this.

Lipkin:  I’ve had physicians say they can’t get a rectal swab because it’s too painful for patients. 

Kitei:  There are plenty of patients who would be willing to do it.

Lipkin: There are all kinds of things people will say, and I don’t want to fight with you. 

Kitei:  No, no. I don’t want to fight with you either.

Lipkin:  I’m fighting for you.  What I do want you to appreciate though, is that our enemy is not that the people we’re talking about. It just isn't.  These people, we may disagree with them, we may think that their strategies are insufficient, we may want to do things differently but none of the people whom you mentioned think it’s a psychosomatic illness or think it’s overstated.  That’s just not who they are.  I know these people.  I’ve worked with them for years…. Beth Unger was desperate for me to be involved in these conference calls, and she was very happy to hear about cytokine abnormalities, and she would like to do more work on genetic responses and so on, all of this she’s interested in doing. She’s interested in a biological solution. 

Kitei:  We’ll agree to disagree on that.  How can people donate to our research?

Lipkin:  We are eager to move as rapidly as possible.  We will be as frugal as we can be.  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.  I want to be working for [patients]. And the problem we have at present is that I’ve gone as far as I can go before the institution says, look you can’t pay your bills.  That’s where we are at present.  I need to be able to pay for the work….

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.  We need to deal with the other 90 percent.  And that’s why we need to look for other sources of infection, other ways in which things get triggered.  And it’s going to be a wide range of things.  Some people it’s going to be infectious, some people it’s going to be toxic, some people it’s going to be hit and run.  All of these things need to be understood, dissected, addressed, and we will chip away slowly at the problem. 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.

Kitei:  But how do you know that yet?   There might be a common-denomination pathogen, like what hit Incline Village and Lyndonville, New York, when all those people came down with it.

Lipkin:  I wish I could get samples from either of those outbreaks.  I can’t.  They don’t exist.  We’ve been asking for them for years.

Kitei:  [Dr. Daniel] Peterson doesn’t have them?

Lipkin:  He’s sending us some materials.  Maybe we will find something.  There’s some mantle cell lymphoma. He’s got very few samples, because most of it went to WPI [Whittemore-Peterson Institute], and they refuse to return it to him. 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.



A Clarification by Dr. Lipkin Concerning Osler’s Web by Hillary Johnson:


On occasion during this interview, Ms. Kitei brought up the book Osler’s Web by Hillary Johnson.  I wish to make clear that I never meant to imply that any quotations in that book, of statements by government scientists or any other sources, were inaccurate.  As I mentioned in the interview, I have not read the book.  And I do not have any reason to believe that Ms. Johnson misquoted anyone.  If anything I said in the interview could be construed to have made such a suggestion, that was not at all my intention.   
W. Ian Lipkin, MD



This article, "Candid Conversation with Dr. Ian Lipkin” is copyright © CFS Central 2014.  All rights reserved.  Unless you receive permission to quote more, you may quote up to 100 words from this article as long as you link to this article and indicate in the body of your post (as opposed to a footnote or an endnote) that the excerpt is from CFS Central.


49 comments:

  1. I don't think Ian Lipkin received $10 million all for himself, did he? The CFI was given an initial funding of $10m, but that money was spent on several different studies, which Lipkin's study(s) is only one of those.

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  2. Great, great interview Mindy. Thanks for standing your ground and agreeing to disagree on Unger and the CDC.

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    1. Yes, great interview, Mindy, and we are indeed fortunate to have Dr, Lipkin interested and willing to hunt this thing down. Since funding is so important, I hope he will educate himself on the political history of the movement - and by all means read Osler's Web to see the similarities in government inaction to And the Band Played On - and learn that Congress has been lobbied constantly for 30 years and responded, only to butt up against CDC telling them we had CFS instead of M.E. Only when Dr, Lipkin changes his cause to M.E. will we know he is ready to address the politics as well as the science, as we have seen science alone ignored for 30 years. We have worked with all the people he mentioned and know that they speak honey but do not fund. It is Lucy and the football. For him to succeed, he has to learn - and conquer - the political side of the issue. The big red flag is the term CFS.

      Dr. Lipkin, please read the interview again and listen to what Mindy is trying to tell you.

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    2. I hope Dr. Lipkin will read Eileen Holderman's recent letter about Dr. Unger's website:
      http://forums.phoenixrising.me/index.php?threads/eileen-holdermans-e-mail-to-cdc.30250/

      He needs the current history (as well as Osler's Web) that explains why he can't get funded for this condition..

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  3. If people are suggesting to Lipkin ME/CFS is psychosomatic, someone must be driving that theory home. To say it isn't the authorities is very naive. Of course, if Lipkin believes it isn't, the people in power who believe it is are going to be dishonest, that's their agenda. Hide the disease in plain sight, and refute and manipulate any old and new evidence.

    The CDC and the UK government (who don't give any funding the biomedical research) were very quick to fund biomedical research to disprove the link between ME and retroviruses, and the CDC have done it twice!!!!

    Funny how they can find funding to prove their opinion and agenda.

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  4. Excellent in-depth interview Mindy. I've put out a strong advisory to read.

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  5. There are no FDA-approved treatments for EBV or HHV-6, and chronic Lyme does not exist according to the powers that be. I don't see any reason to donate money to Lipkin's research when my cohort, which includes those diagnosed with Holmes CFS, are not part of "the other 90 percent" that he is interested in.

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  6. Yes, excellent interview Mindy. While it's nice to know he seems to understand the many factors involved in the illness, I won't be sending him any donations after hearing he's just looking at stool samples, as they miss pathogens, especially parasites, 90 percent of the time.

    I do agree with him however that way too much weight has been given to Hillary Johnson and Osler's Web, which while informative in many aspects, was also incredibly biased towards an HIV-like cause.

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  7. Thanks Mindy for this interview. I think it´s really great to have someone like Dr. Lipkin on our side and I think it´s really worth to support his research.

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  8. I keep liking Lipkin more and more. Wish I had more to donate!

    With Unger, I think that she's more weak and evasive than committed to a psychological explanation. There was one point where she was questioned on the really poor personality paper she was involved in, and she did not stand up for it at all, but presented it as something driven by Reeves.

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  9. Great interview, Mindy. The more I hear from Dr. Lipkin the more my respect for him grows. He definitely seems like a good person to have on our side.

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  10. Thanks Mindy. Lipkin Rocks! Thanks to him, Mady Hornig, and all those scientists from CII, and the clinicians involved also with CFI, and who helped source and provide both patients and samples for the great work that is being conducted.

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  11. I don't agree with Lipkin about Unger Frieden and Fauci. However, he didn’t get where he is today by saying something that might cause a shit storm with people he has to work with. He told us what we need to do. We can go over their heads and find lobbyists and representatives in Congress to champion the cause. It's probably good advice.

    I believe he wants to unravel this disease. With his clout, he wouldn't waste his time if he didn't think there is a good chance of succeeding. If he finds something compelling, the medical community will stand up and take notice.

    I don't understand the negativity I've seen on some other websites. He's studying biological causes, not psychological causes. I doubt there's many patients that have the qualifications to actually know he's going to fail.

    We have precious few researchers in our corner, and Lipkin has more influence than most, it would be a shame if we discouraged him or others because they find our groups too difficult to work with. I’m going to support his research as best I can.

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    1. i couldn't agree more, well said. People stop fighting with the few we have fighting for us!! Use that energy more wisely lobying your politicians like he said !!!

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    2. I agree as well. I can't stand the on and on talk about Unger etc. And I wish people wouldn't refer to Osler's web as the Bible. Here is a person that has know these people in government for years, he does not agree with Hillary's take on it. So obviously he must be wrong - are you kidding me! This reminds me of the XMRV period a couple of years ago - The WPI, Dr. Judy could not be wrong, and if anyone disagreed with them, they were accused of being part of a huge conspiracy theory. I think some in the patient community behaved shamefully. They argued with other scientists, about their field, it wasn't just ineffective, it was potentially harmful to our cause.

      We need to yell and scream but we need to do it in the right direction, and I think he's told us what to do.


      Mindy, I very much thank you for the interview, it shed some light on the process.

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  12. Terrific interview, Mindy. Great to hear about Dr Lipkin's views in depth. He's clearly on our side and fighting hard for us and it's fascinating to hear his views about what's needed to get increased NIH funding. With his experience, he's very well placed to understand what's what. We need tough and healthy people who care about people with ME to go to Congress and fight for us!

    I'll be donating again - I donate every month - and I urge everyone to do the same. The way out of this is through this kind of discovery science.

    Thanks again, Mindy, and thanks to Dr Lipkin.

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    1. I completely echo what you say: terrific interview and it's great to have Ian Lipkin on our side.

      Thanks too for all those donations (declaration: I'm involved with the campaign, and did the original interview with Ian Lipkin about the appeal). I hope many more will join you. Website: http://www.microbediscovery.org

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  13. Thank you Mindy for the valiant work.
    If Ian Lipkin doesn't know if ME is contagious, then I will say the research is lagging. Seriously, why do outbreaks happen? The Lake Tahoe one was about 32 years ago, and its' wake of destruction moves exponentially forward. The "aerosol" transmission of saliva is readily apparent to my non-scientific brain, and direct contact in "saliva exchange" also is obvious to me. Why? because I have lived the experience. I have seen it happen, and it seems I'm not the only one. Of course, the existence of cohorts needs to be factored. We aren't all the same, apparently. But I guarantee nobody should be with me if I sneezed in an enclosed space; & intimate kissing is something I can not responsibly do... wrecked life, after exposure to someone who lived in Tahoe. This is basic info.

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    1. You may have become ill after living with someone from the Tahoe epidemic, it's possible that it was related to toxic mold.

      With all due respect, ME is clearly not contagious. If it were all of our families and friends would have gotten sick like us and tens of millions would be sick. That hasn't and isn't happening.

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    2. Re: ME 'clearly not being contagious', I'm not sure how accurate that is. With polio the numbers who get ill at all are few and most of that is just reported as being a mild/moderate 'flu-like' illness; the number of those who actually succumb to the disease is even much smaller than that.

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    3. John, I agree, the science suggest that there are genetic factors. So it seems very possible to me that it could be contagious, but only contagious in the beginning phase and then most people exposed wouldn't get ill because of genetic factors (i.e. some people seem genetically predisposed to acquiring ME)

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  14. Cop out. So if the money isn't there for me/cfs research it's because patients didn't fund raise enough?

    The CDC has the money to research malaria and to start Centers of Excellence on malaria in foreign countries. It has the money to investigate MERS, also not a major threat to the US. It has the money to research hay fever, male pattern baldness and other non-life-threatening conditions. I don't buy the excuse that patients haven't shown enough interest in this research.

    And, yes, Lipkin should read Osler's Web. He needs to know the history of the political and economic roadmap that has got us to where we are today. Of course, not everything in it is supported today, but if read with that in mind, it's an excellent book. One only has to look at the history of the performance of and response to CFSAC to see that the US government has been ducking and dodging doing anything meanful about this disease for decades.

    Thanks, Mindi, for standing your ground. Excellent article.

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    1. Just because something is in print - or on the internet - does not make it true. Osler's Web has many inaccuracies. A CFS/ M.E. patient since first coming down with a "mono-like virus" in 1975.

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    2. I also disagree with Oerganix. Lipkin didn't say the patients weren't raising enough funds, he said their attention was directed at the wrong agency, the NIH.

      And to suggest that he doesn't know the political history shows that you didn't read the interview carefully. I also think Osler's Web was highly overrated.

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  15. I believe that lobbying for increased government research funding is pointless or even harmful at this time. Notice that Lipkin could not get funded. This is not due to lack of funds - it's due to a biased reviewer giving him a bad review. In Osler's Web this was also occurring many years ago. Nothing has changed.

    Instead of spending money on lobbying for research, I encourage people to directly donate to Lipkin and any other crowd funded research based on the CCC or ICC definitions or ME patients diagnosed by known clinicians. This will allow us to do an "end run" around the government and get good research based on good definitions done. Lipkin's study is the biggest crowd funding effort to date. Getting this fully funded will set a precedent for other researchers to do the same.

    The research will then drive what happens, instead of politics. This is exactly how the MS Society did it decades ago.

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    1. I agree that NIH's biased rejection of preeminent scientists' grant proposal is obvious- it happened to HIV co-discoverer Jay Levy, to Seymour Grufferman and now
      it happened to Lipkin, he protested the biased reviewer being on the panel and for 'reasons not clear' to him, the review lo and behold showed up on the second panel to again reject his grant because "CFS" is psychosomatic according to the reviewer.

      Fauci came to Lipkin with $2M to 'de-discover' (Lipkin's words) XMRV's association with ME. But now Fauci and Collins, though they supposedly would love to do biomedical research on ME, just can't come up with money to give to Lipkin or anyone else trying to do it! Unger still supports the ludicrous Reeves Criteria for "CFS" and has been continuing to do studies using it as the definition of "CFS!"

      HELLO, Prof. Lipkin, is it possible you have been deceived by Fauci, Collins, Unger et al.? With all due respect, and much is due, you haven't even read Osler's Web and you are saying the reporting in it is not true. PLEASE read Osler's Web, or if you do not have the time, take it from the experts in the political history of ME, that CDC and NIH have been waging a war on ME science and patients for 30 years and show no signs of slowing down.

      That said, I am very thankful that you are working hard for us trying, taking an interest in us and trying to drum up support! I agree that we need to go to Congress, but mostly because NIH and CDC are the enemies of ME science, and we need their bosses (Congress) to force Fauci, Collins and Unger to do their jobs.

      I agree we need some sort of Congressionally mandated Research Fund/Body for ME like Gulf War Illness has, because NIH and CDC can not be trusted with the money.

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    2. PLEASE people - do not pick a fight with Lipkin over Osler's web. It is not worth it for him to agree with it. What are you trying to accomplish? He's telling us how to raise money, he wants (almost) as much as we do!

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    3. no compromising the doctor must read ostlers web

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  16. Terrific article, especially from Dr Lipkin's point of view in my opinion. Longterm researchers into this syndrome have been demeaned by some in the patient community for far too long. Thank you, Dr Lipkin! I'm going to contact my CFS specialist so I can participate in your study.

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    1. Patients and controls have already been selected, I'm afraid - I bet we'd all love to be in it.

      Next best thing is to donate, if you can! :)

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    2. your lucky whats a cfs specialist no such animal lives in australia

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  17. Annette WhittemoreMay 12, 2014 at 4:51 PM


    Dr. Lipkin is misinformed. Had he contacted Dr. Lombardi, before
    making these statements, he would know that none of the samples from the original outbreak came to WPI nor have we retained any samples belonging to Dr. Peterson.

    As to collaboration, WPI researchers welcome the opportunity to work with other researchers and physicians.

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    1. It seems we need Dr Peterson's input on this for the full story. It'd be nice if you all talked together and sorted this out!

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    2. I wasted time & money at the WPI. Wrote emails about several "mishaps" that occurred with scheduling, expensive labs that led to nothing, several vials of blood donated for research that for some unknown reason had to be redrawn. My concerns were never addressed. The one employee who tried to help me sort through the mess was suddenly fired. So much deception surrounds ME/CFS. I agree with Andrew K's comment; where the WPI is concerned, Dr. Peterson is the only one I trust. I wish I had gone straight to Incline Village to see him & bypassed the mess at the WPI. ~side note; if the CDC took this disease seriously, the CFS Tool Box would have been changed by now! That's the LEAST they could do.

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    3. THANK YOU FOR THIS WONDERFUL INTERVIEW. I also conquer with Andrew K's statement. Please don't bash ME for saying this, but I had the privilege of meeting everyone mentioned above in San Francisco. Have to admit when Dr Elizabeth Unger approached; I was "lost for words", but now believe her to be an extremely lovely lady; just working for the wrong people. Let's never forget all of the politics involved..... Once again, am shocked by Annette Whittemore's audacity. Is there no end? No one trusts anything out of your month; nor the beautifully wasted WPI. Happy Dr Dan Peterson got out safely with or without his samples dating back to 1984. Yet, you continue to claim how much you have done for this community; it's quite the other way around. "Any news is good news" Sincerely believe everybody should stand (sit) together, and WELCOME DR IAN LIPKIN with open arms, minds, and with the respect that he has earned.

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  18. though I applaud mr Lipkin for bothering with us after Sars etc. I think he's trying to reinvent the (million dollar) wheel here, almost every (informed) patient will tell him it's not just one bug but several and after my brain going berserk after meds I can also point out where they're hiding (among other places like, indeed, the gut)

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  19. Leaving aside all of the things that have gotten in the way of sufficient funding so far, the only productive thing to do is to figure out how to move forward from here.

    Dr. Lipkin spends a significant percentage of his time working to obtain funding for his research. He knows how the system works. He is telling us how to make it work for us.

    Real life is full of people and groups with competing interests. Life is a constant barrage of competitions. The higher up the chain you go, the more vicious the competitions are. Each competition has it's winner and losers. Competing and winning are very difficult to do when you are sick.

    Lucky for us, Dr. Lipkin is well and is out there competing at a very high level for research funds that will benefit us.

    Let's help him out by pressuring congress to increase ME/CFS funding. We as Americans, even sick Americans, have the power to do that. Pick up the phone. Fire off some emails. Let's win some funding!

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  20. So what Annette by "You haven't retained any samples". Is it the same story as you did to the Human Research Subjects samples, along with their rights!!! Why have you not refunded patients money for the VIPdx tests? The private company you own? Are you calling Lipkin and Peterson liars? He specifically said this: "He’s got very few samples, because most of it went to WPI [Whittemore-Peterson Institute], and they refuse to return it to him." You are the one who has lied as all those lies have been captured from the internet. Along with the lies to cover the lies. You may not remember them all but patients do! Just because you removed your old website doesn't mean it everything doesn't exist. It does!

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    1. at least she comments under her own name

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  21. Why don't you ask "kindness" ? And while you're at it ask her how her treatment is going and why it was never shared with the rest who lie suffering?

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  22. Thank you for this extensive interview!

    I would have liked to add two things:

    1. Regarding bio-markers it is my impression that the work of "the Lights" – Alan and Kathleen Light and their work regarding gene expression during/after an exercise challenge – is the next best thing we have to bio-markers. I think the Ian Lipkin team should look into the work of the Lights (and possibly into the work of Christopher Snell as well).

    2. Regarding "gene environment interaction" an overlooked factor is nutrition. There are all kinds of things that should be investigated properly, there are many possible factor. Personally, I would foremost suspect cereal grains, dairy and seed oil – I'm biased, I'll admit that :-). However I understand that this might be a bit outside the expertise of Lipkin's team…

    Nevertheless, if the team Lipkin finds a (hopefully treatable!) pathogen in only 10% of people with CFS, I call that a win! Though I'm skeptical that the pathogen(s) are still there, I fear it will be cases of hit and run in most people with infectious onset of CFS… Let's see.

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  23. One more thing regarding the erroneous believe that ME/CFS might be psychosomatic: I do think that the source of the problem is not individual doctors saying that CFS is psychosomatic – I think the source of the problem is societal.

    I think the source of the problem is that when people see a diseases without clear signs, they will instinctively dismiss it as psychosomatic – heck, I for a very very long time believe that my problems were psychosomatic, and I should get off my ass and do more sports.

    This erroneous believe is ingrained in human society, and yes, we need to fight against that! But we need to understand that removing individuals from harmful positions will only go so far – others harbor independently the same misconceptions about ME/CFS.

    Only a better understand of the pathological pathways and the development of trustworthy bio-markers will help.

    (And what I find funny in a sad way: The proponents of the CFS=psychosomatic theory do not have any evidence for their believes – it is simply accepted "common wisdom" poured into a few studies, and the absence of evidence for physical illness that is mistaken as evidence of absence of physical illness.)

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  24. Andrea Whittemore-GoadMay 17, 2014 at 12:37 PM

    I am so glad Dr. Lipkin and Dr. Hornig are involved in helping solve the problem of ME. They join many others like Dr. Klimas, Sonya Marshall-Gradisnik, Dr. Brewer and many others who are trying to do the same.

    I have been writing about my treatment, advocacy and just general experiences for some time now. Since about April 2012. I think it's important that all of us work together. There are way too many outside factors against us. Our small group of doctors, researchers and institutes need to work together to find the answers.

    http://sevenvirtues.blogspot.com/?m=1

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  25. I mentioned the doctors above because their contribution to our field was omitted above.

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  26. I echo what many others have said: thanks for this excellent interview. It's great to have a person such as Ian Lipkin on our side and I think we should all try to ask friends and family to donate, as well as e-mail/call representatives to support the initiative to get specific funding for ME/CFS from Congress.

    MINDY, a question: The statement that there is more funding for male pattern baldness in America than for ME: this is such a great fact and I’d like to use it in advocacy texts etc, could you help me with a source I can point to? Is the comparison about federal funding? Where can I find the numbers?

    Many thanks for your help,
    Anne Ö

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  27. I believe male pattern baldness gets $16 million a year from the federal government; CFS gets $3 million.

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  28. PPL are dying from Left ventricular dysfunction. It's than written up as congestive heart failure or some other heart-related disease. Severe Cfs patients should consider anything & everything. The HPA axis & Neuroimmune effects increase in severity with age.I have no time to wait. Bring on the antivirals.I'm sorry, I didn't risk it years ago. Existence is not Living & expecting help from the same Scientific biased groups is Unrealistic & Foolish. I haven't read one concrete proposal, as to getting Advocacy- Funding through family demonstrations. I'll settle for a 50& improvement & the hell with a Jigsaw puzzle that would take- in Nancy Klimas' words: 10 yrs. & money equal to M.S.

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  29. I agree with others that this was an excellent and very important. interview. As to approaching Congress and asking for greater support for ME/CFS research we may be too fragmented at this point. We must find ways to establish a national organization that includes all groups of patients, advocates, and key researchers and clinicians, that is, three groups with two elected representatives each so that a board of 6 people could establish the structure and functions as well as raise funds. As long as we are so fragmented we will get nowhere. The feds and Congress have clearly said it is more difficult to help us when there are so many conflicting voices.

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  30. It appears Dr Jose Montoya's 'Late May/Early June 2014' predicted CFS inflammatory and autoimmune paper is still not out. Will it be permitted to be published before the IOM CFS contract is completed?

    Dr Montoya bravely spoke up at a recent CFSAC meeting and mentioned, due to the risk of cancer, CFS patients face possible death, and certainly a ruined life. There was little to no reaction from the designated officials.

    I would imagine it may be unusual, however, to have a ground breaking 'CFS' paper circulated that preliminary demonstrates mild Vs severe CFS (inflammatory profile) and novel autoimmunity whilst the HHS/CDC/NIH all go for 'no single cause', a preference of British military psychiatrists.

    By preventing a novel PATHOGEN ASSOCIATED brain injury being accepted as part of ME diagnosis (via ME/CFS label), you can also then prevent the OTHER diseases being associated. It is crucial advocates understand this phenomena.

    Why?

    Permitting wide-spread biomedical CFS research is the gateway to OTHER chronic neurological and neurodegenerative diseases caused by the SAME pathogen novel 'CFS' pathogen being recognised.

    Tragically, Fukuda CFS or 'fatigue based' criteria will always be here to stay, just re-dressed via the IOM contract.

    ME/CFS will become 'fatigue' under a new banner. To enable this, all of the American CFS biomedical researchers had to be silenced. The IOM sorted that out, by preventing the very people that wanted and needed to redifine CFS as ME, from taking part in the IOM contract.

    Have a long think how, why this happens in the world's most powerful nation, and NATO leader.

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