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.

Saturday, May 10, 2014

Interview with Dr. Ian Lipkin

I had a candid conversation with Dr. Ian Lipkin this week in which he discussed his ME research, the government’s thinking when it comes to ME and how to get more research funding dollars from the government.  I'm working on a story, which will be published here soon. 

Tuesday, January 28, 2014

IOM Testimony

Below is my testimony from yesterday's conference at the Institute of Medicine.  To watch it, click here.

My name is Mindy Kitei, and I’m a journalist.  I’ve been reporting on myalgic encephalomyelitis for more than twenty years and started my blog, CFS Central, in honor of my friend Nancy Kaiser, who died of the disease in 2008.

Fifty of the finest ME experts believe that the IOM lacks ME expertise and that the government should adopt the Canadian Consensus Criteria definition immediately. 

Patients believe that the IOM will devise a name worse than chronic fatigue syndrome, something like “chronic multi-symptom illness,” the meaningless moniker the government and IOM use for Gulf War Syndrome.  On the IOM website, a curious diagram that accompanies an article by Dr. Daniel Clauw, lists several diseases:  Gulf War Syndrome, fibromyalgia and CFS, among them, all covered under the big umbrella of somatoform disorders, psychiatric ailments that just look like physical diseases.

Tell that to Nancy Kaiser, who experienced multiple seizures a day.  Tell that to Jerry Crum and Leanne Hyneman, both of whom I interviewed in 1994 and have since died from ME.  Jerry was in his fifties; Leanne, in her early forties.

Patients believe that the IOM committee will lump real ME patients with the flawed cohort that CDC studies. Dr. Leonard Jason, the premier expert on ME definitions, published that CDC’s cohorts have depression, not ME.  Imagine studying HIV—but looking at patients who suffer only from depression, not HIV.  It’s insanity.

Not only does CDC study the wrong patients, it conducts the wrong studies. Take its new exercise study.  The hallmark of ME is post-exertional collapse. 

But Dr. Chris Snell published that exercise-capacity deficits in ME aren't really evident until day two of testing.  The first day patients resemble deconditioned controls.

So what is CDC doing?  A one-day test.  Why does CDC want patients to look like couch potatoes?  So that the government can write off the ME epidemic of seventeen million souls worldwide, one million in the U.S., the same number with HIV/AIDS.  

The best predictor of future behavior is past behavior.  In the IOM’s book Gulf War and Health, the IOM Gulf War committee writes about CFS—since the symptoms resemble Gulf War—and recommends graded exercise for CFS, which can lead to crashes that last months, even years.  Graded exercise is also recommended by CDC and psychiatrists like Simon Wessely—both of whose work the IOM Gulf War committee endorsed.

Given its clear bias, the IOM must recuse itself.  And the government should adopt the Canadian Consensus Criteria and spend that $1 million for real research.  Thank you.

Friday, January 17, 2014


Thirty-year-old Joey Tuan can pinpoint the exact moment he got sick in 2005.  It was mile three of a 17-mile hike at Half Dome in Yosemite. Before he reached that pivotal instant that would change his life, he says he was in the best shape of his life—and having the time of his life. “I was an adrenalin junkie, a classic type A pusher, working 60 hour weeks as a dispute investigations consultant in San Francisco, going to the gym four times a week, studying for the Chartered Financial Analyst exam, and I’d just graduated from Berkeley,” Tuan recalls.  “I jumped at any opportunity to try new restaurants and hang out at bars with friends. The word ‘stop’ wasn’t in my vocabulary.”           
Until mile three, that is.  Tuan struggled through 14 more miles and returned from his hike sporting a high fever.  He was soon diagnosed with mononucleosis and then made the mistake of going back to work after only three weeks.  He was nowhere near recovered when he jumped at the opportunity to go to Shanghai for a business trip. After two weeks in China, he developed a throat infection. Upon returning home, he couldn’t drag himself to work. Instead, he quit his job and moved back home in Los Angeles, spending the next six months bedridden, cared for by his parents.

It would take 10 months for Tuan to get a diagnosis of myalgic encephalomyelitis (ME), formerly known by the trifling name chronic fatigue syndrome that doesn’t begin to describe the level of disability that the disease causes. He learned about ME not from his family doctor but through an online forum that described his symptoms perfectly and listed ME-literate physicians.  One nearby diagnosed Tuan. “Until that point, top infectious disease specialists at UCLA kept saying, ‘It’s just mono,’ ” Tuan says.

Being Invisible
The diagnosis was only the beginning of his journey. Tuan’s spent more than $200,000 on medications, supplements and alternative treatments trying to get well. But year after year, nothing really helped. No matter how much he slept, he didn’t feel rested. His mother prepared his meals because he couldn’t stand up to cook.  “I’d go on my computer, read forums and research for 30 minutes until my head started throbbing, and I had to stop,” he says.  “At night I’d take a bath because I couldn’t stand up for a hot shower, and then I’d take sleeping pills to force sleep.  I was basically living but not alive.”

But the worst part wasn’t the illness: It was being invisible and not being believed.  “Because I looked mostly healthy on the outside, friends, some family members, even doctors assumed I was either lazy, or that my illness was psychological,” he explains. “It’s not uncommon to hear patients say they’d rather have cancer so that others will believe they’re sick.”  

Tuan was lucky enough to have supportive parents. But even they didn’t know the full extent of his illness. “When we traveled together to Germany in 2009 for treatment, I had to ask for a wheelchair at the airport.  That’s when my mom realized how disabled I really was and broke down in tears,” he says. After six years with ME, what finally turned things around for Tuan was experimenting with living in a toxin-free environment in the desert outside Las Vegas.  It had helped a fellow patient he met on the online patient-support boards, and Tuan thought it was worth a shot. 

Match Patients
With his health significantly improved, he now wants to help other patients avoid the painful years he spent trying to find a way out of his illness. “What was so frustrating for me was when a patient would say treatment X was helpful, I had no idea if they had what I had,” Tuan says.  “Were our symptoms, lab work and genetics the same?  ME is such a poorly understood disease, and some patients work full time while others are bedridden. Some respond amazingly to antivirals, whereas others get worse. Sharing information with each other was as potentially risky as it was potentially helpful, because we’re such a mixed bag.”

Necessity, for Tuan, became the mother of invention, and he started a free online group, HealClick ( to help patients.  “For treatment reviews to help ME and other poorly understood conditions, we match patients up based on their entire condition,” he says. His first challenge was to see if patients would even use another social network other than Facebook, so he started out building one just for young adults with ME, fibromyalgia and Lyme disease.
Patients flocked to the site, so Tuan and his partners decided to go for it and build a platform that would cater to autoimmune patients of all ages. They began building a social platform in 2013 and in July launched their alpha with a content feed that could be filtered by specific diagnoses. In December, they launched their beta personalizing content automatically to the patient’s entire condition. In addition to ME, fibromyalgia and Lyme disease, HealClick is geared to patients with poorly understood, frequently overlapping autoimmune conditions, including lupus and arthritis.  The site aims to be a warm and social place—not unlike Facebook.

Patient-driven Revolution
Content caters not only to a patient’s condition but also to symptom severity, treatment responses and, soon, lab work. More importantly, data on HealClick goes right into a de-identified database for medical research, according to HIPAA guidelines, which Tuan will share with researchers and companies with a track record of helping patients. “Patients identities will always be protected,” Tuan maintains.  (To read HealClick’s privacy policy, click here.)

Tuan’s goal is to create a patient-driven revolution of personalized health information and research data.  “If we can get enough users and keep advancing our patient-matching algorithm, we can start correlating co-conditions, symptoms, treatments and labs for patients to discuss with their doctors,” Tuan says. “We hold a power in numbers that could be game-changing. If we can arm ourselves with a database that truly captures our health over time, we can then present ME and other diseases as diseases worth solving.”

HealClick has launched an Indigogo fundraising effort.  If you’d like to contribute, click here:  To sign up for HealClick, click here.