Interview with Ian Lipkin: posted

[Mindy Kitei]

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

Mindy Kitei
CFS Central
cfscentral.com

 

[SOC]

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

Mindy Kitei
CFS Central
cfscentral.com

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

 

[Nielk]

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

excerpt:

"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."

 

[Countrygirl]

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

Mindy Kitei
CFS Central
cfscentral.com

Oops, sorry Mindy, I missed your thread despite a search. There are now two threads.

I seem to be having to use rather a lot these days.

 

[Undisclosed]

Oops, sorry Mindy, I missed your thread despite a search. There are now two threads.

I seem to be having to use rather a lot these days.

I have deleted that thread. The link to Mindy's article is http://www.cfscentral.com/2014/05/candid-conversation-with-dr-ian-lipkin.html#comment-form

 

[Simon]

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:

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.

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

 

[garcia]

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.

 

[Esther12]

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.

 

[Forbin]

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.

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.

 

[biophile]

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."

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

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: [...]

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.

...

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.

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.

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

 

[Sasha]

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!).

 

[natasa778]

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 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...

 

[justinreilly]

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.

Response and Thank You for Interview with Mindy Kitei

Dear Prof. Lipkin,

I write regarding the interview you did with Mindy Kitei recently. Thank you. I found it very informative.

I have had ME and Lyme for about 12 years.

I am very thankful that you are working hard for us, taking an interest in ME science and trying to drum up support!

I realize you know Drs. Fauci and Collins, so I apologize for having to speak the following unflattering words about them; I do not want to cause you grief or annoyance. But I must tell it like it is; this subject is too important.

I agree that the ME community needs to increase it's efforts in lobbying Congress, but mostly because NIH and CDC are the enemies of ME science, and we need their bosses (Congress) to force Drs. 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.

NIH still claims it only gives a few $Million for ME research annually purely because of the lack of grant proposals of acceptable quality submitted. However, NIH's biased rejection of preeminent scientists' grant proposal is obvious. From the very beginning this has happened to the likes of Profs. Jay Levy, Seymour Grufferman and many others and now it has happened to you. You protested the biased reviewer being on the panel and for 'reasons not clear' to you, the reviewer lo and behold showed up on the second panel to again reject your grant because "CFS" is psychosomatic according to the reviewer.

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

Prof. Lipkin, I must be blunt: is it possible you have been deceived by Drs. 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 at least some of the reporting in it is not accurate. PLEASE read Osler's Web, or if you do not have the time, please 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.

To give one of many many examples, patients complained about the atrocious behavior of Stephen Straus, MD, who was a protege of Dr. Fauci and the only person ever assigned full-time to "CFS" at NIH, to a Member of Congress who was sympathetic to us, John Conyers. According to Osler's Web, Dr. Fauci paid a visit to Rep. Conyers and told him in strong terms to back off. According to Osler's Web, Members of Congress are typically extremely deferential to Dr. Fauci and in this case Rep. Conyers was and did back off.

You are right that we need healthy people to lobby for us because we are too sick and bereft of money and social capital to do so effectively. A main reason we are in this situation of being so battered down is because of CDC's and NIH's war on ME patients.

Columbia's School of Public Health has a proud, ongoing and prominent tradition of being sensitive and promoting the public health of underserved and vulnerable populations. Please, please make the case to Dean Fried and whoever else necessary to please put their money where their mouths are and help us. It would be one of the best bangs for their buck in terms of furthering American public health.

Another request is that you consider calling the disease ME or ME ("cfs") since CFS is a harmful name.

I know you are incredibly busy, but I would appreciate your acknowledging that you have read this email and will consider it. Of course I would love to speak with you about these topics, but understand that may not be possible due to your very busy schedule. Thank you for your time.

Sincerely,
Justin Reilly, esq.

 

[Esther12]

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.

 

[peggy-sue]

I'm concerned about the use of "recovered" subjects as comparisons.
Very concerned.

 

[RustyJ]

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.

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.

 

[Hip]

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?

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 !?!

 

[Bob]

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.

 

[geraldt52]

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...

"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.

 

[garcia]

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 !?!

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.