Mindy Kitei just posted a long interview with Ian Lipkin, the renowned ‘virus-hunter’ leading the Chronic Fatigue Initiative’s ME/CFS pathogen discovery project. Dr. Lipkin has also begun a crowdfunding effort to raise the funds to do comprehensive microbiome analyses in people with Chronic Fatigue Syndrome.
Mindy’s interview “A Candid Conversation with Dr. Ian Lipkin” raised many issues and we’re going to dig into some of them in this blog.
Infection and the Immune System.
Lipkin Still Suspects Pathogens in ME/CFS
Lipkin still believes multiple pathogens are involved in a subset – maybe thirty percent – of ME/CFS patients
Lipkin’s initial search for pathogens in ME/CFS came up startlingly negative for a disorder many have assumed has at least some pathogenic component, but Lipkin indicated he still believes active infections (herpesviruses, enteroviruses, and Borrelia) are present in perhaps thirty percent of patients and that he will find them.
Despite the negative results of his first round of testing, he is still looking for them in the blood and elsewhere. In fact in some ways he’s only just begun.
- Check out what else Dr. Lipkin has to say about pathogens and his upcoming immune and pathogen ME/CFS studies in Mindy Kitei’s interview here.
The Other Pathogens
Hence his focus on the gut — a huge player, he said, in autoimmunity and immune regulation – and his (our) crowdfunding project to identify the other pathogens – the microbes in the gut – that he believes are causing ME/CFS.
His focus on the gut suggests that agent that triggered the illness isn’t as important as the gut alterations it engendered. Indeed, evidence suggests that the gut flora can be altered significantly by infection (or toxins or antibiotics, etc.) Thus far most of the studies examining the effects of infection on the gut microbiome involve animals, but the results are fascinating.
It’s possible (but not proven) that earlier infection could have permanently altered the gut microflora in some individuals
A bacterial infection in mice altered their microbiome and their ability to detoxify arsenic. Both Staphylococcus and Salmonella infections altered the gut microbiome significantly. Periodontitis (gum infection) was associated with increased prevalence of a family of gut bacteria, which in turn was associated with increased gut permeability, increased insulin resistance, and inflammation.
Whether it was a pathogen or toxin or antibiotic or a hormone or whatever – something, Lipkin believes, has likely pummeled the guts of ME./CFS patients into producing substances that are causing them fatigue, cognitive problems, etc. In an upcoming blog we’re going to review a gut altering therapy that caused one ME/CFS patients orthostatic intolerance to virtually disappear in a week.
- Find out what Lipkin wants to do with the gut abnormalities he believes he’ll find in ME/CFS and how they could lead to treatment options in Mindy’s interview “A Candid Conversation with Ian Lipkin” here.
Dr. Lipkin is so jazzed about the possibilities the gut plays In ME/CFS he’s collaborating with patients in a Crowdfunding effort to get a large study done. Check out the superb website ME/CFS patients have put together to launch it here.
The Politics of Chronic Fatigue Syndrome
Mindy’s discussion with Lipkin on the leadership at the NIH and CDC was fascinating.
The Myth of A Psychosomatic CDC
“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.” Ian Lipkin (Kitei Interview)
Lipkin reacted strongly to Mindy’s assertion that the CDC has a psychosomatic view of ME/CFS. That idea that the CDC promotes a psychosomatic approach to this disorder has been a common theme in the ME/CFS community for decades, but it’s not borne out by their research – even the research done during Dr. Reeves reign. Lipkin, by the way, acknowledged that Reeves was a problem (“I knew Bill Reeves. He was a problem.”), but also that he is gone (“he’s no longer on the face of the earth”) and suggested that the ME/CFS community might want to move on as well.
The good news is that Lipkin asserted that neither the leadership of the CDC or the NIH believes ME/CFS is a psychosomatic disorder
It’s not that important issues aren’t present at the CDC, but a psychosomatically oriented research program is not one of them. You can determine that simply by looking at their research. An analysis of Dr. Unger’s last twenty ME/CFS studies indicates she was a co-author of two studies with behavioral overtones (one adverse events study as last co-author listed, one coping study) and 18 epidemiological or pathophysiological studies. (She did not co-author the personality study. )
Even Reeves mostly focused on epidemiological and pathophysiological studies. Only eight of the 74 ME/CFS studies he co-authored had psychological overtones. While there were a few shockers (personality study, adverse events) many the rest are pretty innocuous (e.g., coping styles).
Dr. Lipkin was pretty torqued by the suggestion that Dr. Unger had a psychosomatic approach to ME/CFS:
“Beth Unger was desperate for me to be involved in these conference calls and she was very happy to hear about cytokine abnormalities.. She’s interested in a biological solution.” Ian Lipkin (Kitei Interview)
Under Dr. Unger, the CDC is devoting most of its resources to understanding how our top ME/CFS physicians diagnose and treat ME/CFS. That multi-site project will go far to refute the idea of ME/CFS as a behavioral disorder and should help validate non-behavioral treatments for ME/CFS. The fact that, several years into the multi-site project, Dr. Unger is still regarded as having a psychosomatic approach to ME/CFS reflects how strongly embedded the CDC/psychosomatic/behavioral theme is.
The idea that that the CDC’s ME/CFS research is focused on psychological issues just doesn’t fit the facts.
Everybody remembers the personality studies and forgets that Reeves also produced many gene expression, retrovirus, HHV-6, immune, and cortisol, studies. I don’t believe Reeves was either creative or that he moved the field forward — he was not a plus for us — but the study evidence just doesn’t bear out the idea that he ran a research program focused on psychological factors.
We often talk about how stigmas in ME/CFS have lingered in the medical community long after they’ve been disproven, but the same can be true in our community. As a community we’re so tied to the idea that the CDC denigrates ME/CFS that we tend to focus on its few behavioral studies while ignoring the vast majority of pathophysiological work they’ve done.
Again this is not to say there are not legitimate issues to bring to the CDC’s attention – there certainly are – but a psychologically based research emphasis is not one of them.
Politics
The Myth of Unsupportive Leadership at the Top (?)
“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.” Ian Lipkin (Kitei Interview)
Lipkin asserts Fauci, a friend, does not believe ME/CFS is a psychiatric disorder
Next, Lipkin stomped on the idea of an NIH leadership that thinks ME/CFS is bunk. The truth is we’re sitting on the outside seeing year after year of abysmal funding, and coming to the logical conclusion that Fauci (Director of NIAID) and/or Collins (Director of the NIH) and/or Frieden (CDC) is the problem. Logic seems to indicate that they’re just not interested in funding ME/CFS but Lipkin says not so!
Lipkin asserted that the leaders’ hands are tied with regard to the big stuff that we need, such as a Center of Excellence and a broad-scale attack on ME/CFS. He stated
“Tony [Fauci] doesn’t have the ability to start a brand-new program on chronic fatigue syndrome … (that) … He’s continually being pushed to work on influenza, HIV, bio-threat agents, things of that nature.” Ian Lipkin (Kitei Interview)
This was hard to swallow. It’s not just that we can’t get a Center of Excellence; our funding hasn’t even kept up with the pace of inflation over time. As the NIH’s budget doubled, ours dropped. The Institute’s had trouble ponying up for what Vivian Pinn called “the smallest RFA possible”. Fauci has been the head of the big NIH immune institute (NIAID) for decades. He was there lobbying (apparently) for ME/CFS to be moved out of the NIAID fifteen years ago and he’s been there as our funding has shrunk.
To say that a director of a 4 1/2 billion dollar Institute can’t pony up an extra five or ten million dollars for ME/CFS is to beggar belief (or to completely misunderstand the Director’s role/power.) Ditto with Director Frieden and his 11 billion dollar budget at the CDC.
Ian Lipkin, however, is an insider, and he’s one of the few insiders willing to speak publicly about these matters. He knows Fauci well. I imagine that he knows Collins well as well, and when he says Fauci does not believe ME/CFS is a psychiatric disorder, and that Collins at least recognizes that ME/CFS ‘is a problem’ and would love to have funding to work on it, I believe him
I believe that with Lipkin – now a gadfly for ME/CFS funding at the NIH – pushing ME/CFS they would do it in a heartbeat and they would do it right if they were given the money. It may be that Collins, Fauci and Frieden all have trouble initiating the kind of major overhaul and increase in funding that Lipkin wants and we need.
A Structure For Mediocrity
The funding structure for ME/CFS make poor funding almost inevitable
There’s another problem. The funding mechanism for ME/CFS presents an enormous additional barrier to overcome. ME/CFS is funded either through the Institutes that make up the Trans-NIH Working Group or directly via the Office of the Director. Because of the way the Trans-NIH Working Group is composed, none of the Institutes see ME/CFS as their mission; therefore, none of them are responsible for it, and therefore none of them are predisposed to fund it. The buck doesn’t stop anywhere at the Working Group and the Office of the Director doesn’t have much money.
To say that the Heart Lung and Blood Institute is more interested in heart disease than ME/CFS is like saying the Air Force is more interested in investing in drones than in toy airplanes. There’s no mystery to this. There’s no reason for the Heart, Lung and Blood Institute to be interested in what is, for it, a side issue (ME/CFS) when it’s directly responsible for eradicating heart disease.
Politics – The Way Out
“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.” Lipkin – the Kitei – Lipkin Interview
Whatever role the Directors play, Lipkin is almost certainly right in his prescription to go to Congress to increase ME/CFS funding. If you look at NIH funding, you generally find small changes in amounts allocated to individual disorders from year to year. Cancer doesn’t all of a sudden get a major increase in funding; it gets relatively small increases that build over time. ME/CFS hasn’t gotten the increases, so it hasn’t built over time.
The exception to that general rule are hot topics like research into anthrax and other bio-terrorism agents, influenza (remember the flu scare?) which Congress feels the heat on and directly pushes for increased funding.
The institutional barriers (and we haven’t gone though all of them) are why Lipkin is so adamant about building Congressional support.
It’s called the power of the purse. if Congress allocates money for ME/CFS, the NIH will spend it.
Lipkin asserted again and again that Congressional support is needed in order for funding to increase substantially. He’s been here before. In the early 1990’s he was there when a few parents with autistic children pushed Congress into producing a Center of Excellence for Autism. (Note how many parents were involved – “a few”.) They apparently found one or more Congressional champions who inserted legislation requiring the NIH to create that Center of Excellence.
Llewellyn King (of the White House Chronicle), who also knows whereof he speaks, agrees. He just posted a passionate blog advocating a million dollar a year program to fund a lobbying effort for ME/CFS.
- For more reasons Ian Lipkin believes ME/CFS has trouble gaining traction at the NIH see the Mindy Kitei interview “A Candid Conversation with Ian Lipkin”
Looking For a “Champion”
Marly Silverman, the founder of PANDORA, was always scouring the halls of Congress looking for a ‘champion’ — someone with a personal stake in this disorder preferably — who could bend the NIH to their will. Tina Tidmore and company found a champion in Georgia and came close to getting an ME/CFS-FM-Lyme Center established in a major hospital there.
We had a champion decades ago, whose name escapes, and he played a major role.
Don’t Lose Lipkin!
“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.” The Kitei-Lipkin Interview
It’s exciting to have a researcher of Lipkin’s stature so interested in ME/CFS, yet even the world’s most famous ‘virus hunter’ has had trouble getting funding. Note that with the exception of the XMRV research all of his funds to study ME/CFS appear to have come from private sources.
He’s had two grant applications fail. (It would be interesting to know what his grant application success rate is in other fields.) Both times the review panel was clearly inadequate. One of the times he tried to get a person kicked off the panel only to see him pop up on another panel.
Still, Lipkin is passionate about ME/CFS — so passionate that one wonders if he has a relative or friend with it. His presence with ME/CFS is nothing if not remarkable. Researchers often get more conservative as they gather accolades and have a reputation to protect, but here’s Lipkin, at the top of his field, stubbornly plowing away at ME/CFS — no doubt raising eyebrows all over the place — trying to raise money outside normal channels, advising the ME/CFS community to go to Congress to force the NIH support research.
It’s remarkable. I was astonished to see Lipkin, who must have a to-do list a mile long, spend several days at the IACFS/ME conference.
He has a reputation for ‘bluntness’. He does not suffer fools gladly. ME/CFS seems like the kind of disorder –controversial, poorly defined, not well-accepted — that a tough-minded researcher like Lipkin might not be interested in and might even try to avoid, but here he is.
Dr. Lipkin on the Crowdfunding Effort
The Ian Lipkins of the world don’t come around very often for ME/CFS. He’s an opportunity we don’t want to miss… a resource we can’t afford to waste. We had him for a time 20 years ago and then lost him and now he’s back again – for now. He’s a busy man. He’s in demand. Something is always popping up.
Support the crowdfunding project!
We want to get as firmly embedded with Dr. Lipkin as we can. We don’t want this to be our year or two with Ian Lipkin before he moves onto something else because he can’t get funding. Let’s support his, or as he said, our microbiome project. (It”s probably worth a million dollars just to keep Lipkin and 60 person Center for Immunity engaged.)
“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.”
“Eager to serve!” How often have you heard that in connection with ME/CFS? It chokes me up a bit. Let’s keep Ian Lipkin in the game, serving the ME/CFS community. Let’s support the microbiome project that he thinks could be the answer to ME/CFS.
- Support the Crowdfunding Effort here
- Find the Mindy Kitei-Ian Lipkin interview here.
Dear Cort:
Can you help me out with my appeal to Humana to continue paying for my Xyrem? They have paid for it for 8 years this summer, and I don’t know how I can continue without the good and restorative sleep it provides. I am desperate, do you know of something else to change their mind? Thanks for all you do, Abby
Personally, I think Dr. Lipkin is a bit naive. He appears to be accustomed in dealing with issues that the politicians and bureaucrats want to solve such as SARs. Unfortunately, “CFS” is not one of them. One only has to look at Gulf War Illness to see what happens when there is support in Congress but not at the executive level (i.e. Veterans Affairs et al): the research gets sandbagged and politicized.
I agree that everything should be done to help Dr. Lipkin but it should be done at a private level. Lobbying the NIH/CDC/Congress is not the right way to go. Once there is irrefutable evidence that can’t be sabotaged than lobbying and bringing the bureaucrats back into the fray may make sense. Until then it’s a futile effort – and I think a distraction and waste of precious resources.
BTW – if the CDC really wanted to make progress they would remove any references to “CBT”, “GET” and anti-depressants as primary therapies. Until they take that basic step I will continue to believe that the CDC/NIH believes this is a psychosomatic disorder that RESULTS in a physiological one.
The CDC, NIH, FDA are not places where there is going to be any “creative” thinking in difficult to solve conditions or problems. They have become more “DMV” than cutting edge research facilities looking to solve real health issues.
Unfortunately, the federal govt really is where the money is for medical research. It’s a huge pot of money – there’s really no replacement for it. I agree with you on much of the CDC’s CFS research – very little of interest there unfortunately – but have to disagree on the NIH – lots of very creative research there IMO. Unfortunately not much on ME/CFS!
Guess we’ll have to agree to disagree. The likes of Susan Maier don’t inspire lots of hope from the NIH either. Until there is “champion” at the highest levels of NIH who really wants to move this forward and it’s made clear that ME is a “real” disease than getting money from Congress will not be spent well…
“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.” Ian Lipkin – Mindy Kitei interview
There are two problems that need to be dealt with: the lack of funding and a bureaucracy at the “Executive” level that is not interested in moving this disease forward. Lobbyists can be effective with Congress but it takes a whole other effort to confront NIH & HHS.
Having a powerful lobby would change the game. So many diseases are also taken seriously because of their strong lobby. Interstitial cystitis has special rules in Social Security disability determinations for that very reason. The blind have higher earning ability while on disability due to their strong lobby.
I so agree, I have been “lobbying” for the CFIDS assoc to hire a lobbyist or PR company for a long time now.
And I want to thank Health Rising for writing this article.
Llewelyn King wrote
Simply stated: Being on the ground in Washington every day is the essential step the community has to take.
To get results in Washington, you need to-see-and-be-seen in the daily life there. Letters and petitions do not have nearly the impact as a Washington denizen talking to a decision-maker in person.
I figure that for as little as $1 million, a start toward a Washington presence can be made. That would cover one advocate/lobbyist, one office and one assistant for one year; not a smidgeon of attention from a giant lobbying firm, but a dedicated ME/CFS standard-bearer. Funding should grow within a year, as the ME/CFS cause comes out of the shadows.
I operated a small business in Washington for 33 years, and I am confident that a new ME/CFS presence there will reverse the disease’s funding fortunes at NIH, increase media awareness, and cause the big foundations to sit up and take notice. It would give ME/CFS the kind of presence that other diseases with active advocates – COPD, ALS, MS and others — have in Washington and the nation.
If this is not done the government will continue to ignore the case for ME/CFS. Worse, the new billionaires who are beginning to throw real money into biomedical research will not know about ME/CFS. It will be hidden in plain sight much as it has been from the wider public.
– See more at: http://www.whchronicle.com/category/articles/#sthash.85I9n9uZ.dpuf
– See more at: http://www.whchronicle.com/category/articles/#sthash.85I9n9uZ.dpuf
My M-I-L was a very successful volunteer lobbyist for the local ARCA chapter for decades. Her opinion is similar to Llewellyn Kings. She has told me “you really need someone on the ground in DC who can figure out who it is these congress people listen to and connect with them. That’s when you really make strides in getting funding. And having paid staff to do it is critical. Once you have them in place, THEY will make sure you keep getting funding because it’s their job at stake.”
Almost makes me wonder if we should switch our crowdfunding focus to raising money for a lobbyist now so that we don’t have to keep doing crowdfunding for every individual doctor and university who wants to do research on our behalf. If we get some decent funding out of NIH, we shouldn’t have to do all that. Even my cardiologist was laughing in disbelief when I said something about having to crowdfund for Ian Lipkin.
Biomarkers are most important for any research. I’ve mentioned this before and not gotten any response, A liver ultrasound is so simple and cheap, yet, we don’t do it because our liver blood work is OK. As mine still is, although, I have non alcoholic cirrhosis of the liver!!
Do we all have some form of cirrhosis? Without some form of imaging test, we don’t know. RP
Rich,
Eric Topol — an M.D. who is quick to adopt the new technology — says that he has used a portable ultrasound for several years now (instead of a stethoscope).
A liver ultrasound would be even cheaper with a smaller, portable model. (These are only for medical professionals; only the richest could arrange the clout to have one at home. And for something “portable” they’re very expensive.)
But . . . clinics or even a single doctor could conceivably have such a thing. Otherwise, it’s that machine the size of a Smart Car. And also, even if it’s “cheap,” how much does it cost per go-round?
p.s – about biomarkers. Biomarkers can be deceptively useless.
One huge money-pit, time and energy sink has been beta-amyloid for Alzheimer’s — they keep having failures of clinical trials based on this and that premise about Alzheimer’s.
And just a few years ago, an ALS group paid a million-dollar prize for a “biomarker.” What somebody came up with, and won the million for, was the promise of working on a specialty device . . . juuuust for ALS. Haven’t heard that any result ever came of it. Not only that, but it’s possible to buy a very similar, although not ALS-specific, type of device off of Amazon.com for around $200.
So be wary of the concept of biomarkers. Not always useful, even when they’re identified.
Wow! Fantastic article.
Thanks Cort.
(and yes, I have donated, wish I could donate more),
wish I could do more. Like if I was better, or better enough I could advocate a lot, but I am far from better enough, it is a catch 22. Thank you for all your efforts Cort.
Does make me wonder what some of the folk who are recovered are up to though. They have the energy to really help, where are they? Just a thought
Tim
I imagine that most of the recovered (whoever they are :)) are mostly living their lives. We certainly could use their help and we really need more Mary Dimmock’s – parents who are committed to making a difference in this disorder.
Mary is a good case in point; if we had just 5 or 10 Mary’s we’d be in much better shape.
A dedicated person can do a lot. Llewelyn asserted one full time person and one assistant in Washington DC could change the conversation. I wouldn’t be surprised at all if he was right. Lipkin said a couple of parents of autistic children did it for autism..
Anybody out there reading who wants to make a difference?
I think this makes so much sense. I am not your person, but would gladly contribute to their salary 🙂
Yes! My daughter and I are crowd sourcing my husband Dr Ronald Davis’ work at Stanford. Our son has a horribly severe case of CFS. Ron needs funding to use his expertise to help figure this out. He’s motivated. He personally knows how seva sting this is and is stuned by his knowledge of the suffering of millions. I will gladly speak to anyone about this! http://Www.cfsresearchcenter.org
Ron also believes the govt needs to step up, apologize, and make up for their neglect with a huge funding effort. Some kind of consortium of great docs and scientists who can work in collaboration and really tackle this monster!
Like Ian Lipkin, Ron Davis is one of the top figures in his field. It’s kind of wild that we now have two of the top researchers in the world – who are eager to go on ME/CFS – and they’re crowdfunding to raise the funds. They’re both great places to put our fundings IMO.
Personally I think that Dr. Ron Davis will be our champion and I’ll donate to his research because:
– He is at the very top of genetics and biomedical fields in the world
– He runs the Davis Lab @ Stanford
– He is not only a brilliant scientist, but also an amazing human being
– He works in close collaboration with Dr. Jose Montoya and Dr. Andreas Kogelnik (with direct access to bio samples from these 2 clinics patients’ and healthy family members) two of the most humble, smart, dedicated clinicians
– He is used to decipher, analyze and work with very complex bio systems
– and last but not least he is unfortunately for him, personally touched by ME/CFS
He also is one of our Experts on the panel at IOM.
Ian Lipkin is surely a great researcher, virus hunter, but I’m afraid he is not as open minded and completely indipendent from the old foxes that have been running the CDC, NIH etc.
What a great person and Foundation to donate to VBee :). That’s great to hear.
Hi VBee!
What a wonderful comment! Can we have your permission to put it on our FB page and website? Would you like your name on it, or anonymous? You could message me on our FB page: Chronic Fatigue Syndrome Research Center at Stanford University.
Thanks!
Janet Dafoe
Hi Janet,
You can surely post my comment on your FB page and website as well.
I’m not on FB yet, I’ve been thinking about it for a very long time :), when I’ll get an account it will be to support awareness of ME/CFS and serious and sound biomedical research such as the one your husband Dr. Ron Davis is undertaking.
Sorry! “Devastating” not “seva sting”!!!
That sounded like some sort of scary Indian term. It kind of fit 🙂
Thanks so much Cort for your blog, and for highlighting Dr Lipkin’s enthusiasm for ME/CFS research, and his support for our community. We agree with you that having Dr Lipkin support our community is a huge opportunity that we shouldn’t miss. The crowdfunding project has a website, facebook page and Twitter account, and we welcome everyone to come and join us.
Please come and join the crowdfunding project.
To find out more, please visit our website:
http://www.microbediscovery.org
To donate, please click here:
http://www.bit.ly/DonateToDrLipkin
Please join us on Facebook:
http://www.facebook.com/microbediscovery
And on Twitter:
https://twitter.com/MicrobeProject
Contact us:
info@microbediscovery.org
You guys have done a GREAT job on the website – very professional! Congratulations 🙂
Terrific article, Cort. The arrival of a world-famous scientist of the stature of Dr Lipkin is a fantastic thing for our community. I hope that people will donate to the fundraising campaign.
I agree with Llewellyn King that we need a lobbyist in Washington and I agree with Janet Dafoe that we should support Dr Ronald Davis (another world-famous, absolutely top-notch scientist) in his work.
People often say that as a community we don’t have much money to give. Obviousy, many of us will be in circumstances where there’s just no money to spare. But many of us do have money that we can give, but for some reason, don’t give it. Maybe it’s because it seems like too little to make a difference, maybe it’s despair and the idea that nothing can change, or fatalism, or waiting for others to act – I don’t know what it is. But every single one of us who can afford it should be donating to any and all of these projects and spreading the word about them. I’m giving regularly to Dr Lipkin’s project, I’ve given to Dr Davis’s, and I’d give to a lobbyist fund if Llewellyn King would set one up.
There are one million people with ME in the US and together we can easily fund all this stuff, and fast. Look at the money raised in our recent crowdfunding projects in the US. $200,000 for Jen Brea’s film in 30 days! $150,000 for OMI’s B12 study in 75 days! The money is there – people just have to start donating.
Please give! Here’s the link:
http://www.microbediscovery.org/
Thanks again, Cort. Great article!
I think you’re absolutely right Sasha. I think the Canary fundraiser was so successful because they could see the video and they could envision success! It was so easy in that case. Ditto with Rituximab – we had that successful trial and that was incredibly inspiring.
It’s harder to see that with other research. I have no idea who’s going to be right about ME/CFS but what I REALLY , really do know is that I want people like Ian Lipkin and Ron Davis involved – because they are the ones who are probably going to find the answers 🙂
I agree with floydguy. Either Lipkin is naive or his loyalty to his friends is blinding him to the reality. If he thinks Fauci is blameless for where things are with this disease, he just doesn’t know (or care?) about the history and Fauci’s part in it. As for Beth Unger, she hasn’t done anything yet, except refuse the two-day test for PEM and talk a good one.
We know the federal health burearacracy by their results: nothing, or something negative, so far.
They were able to come up with $5 million to “rebrand” ME into CFS and then propagandize the whole country, right on down to family and friends, not to mention doctors and researchers, that this disease is psychosomatic. They could have countered that misinformation many, many times since then. Even at that time there was plenty of biomedical proof of physical illness and so much more has been produced since then.
But I’m glad to find out Lipkin’s attitude and biases. I’ve donated to his project in the past but from now on I will limit my donations to Open Medicine Institute, folks who actually do know the history of malfeasance regarding ME and aren’t too buddy-buddy with the perpetraters to see what Lipkin prefers not to.
Well that wasn’t hoped for response! 🙂
Whether Lipkin is right or wrong about Fauci – and I can see your concern – I want to point out that Lipkin is absolutely adamant that ME/CFS is not a psychosomatic disorder – and that he’s expending a lot of personal capital – telling everyone – his peers, the media, Fauci – that it’s not and his research is really dedicated to, among other things, proving that’s not so.
On the other hand the Open Medicine Institute is a great place to donate to – and I’m glad you’re supporting them. 🙂
Wow, thanks, Cort 🙂
I thought it was a barn-stormming interview from Ian Lipkin – and I was blown away by your write up and analysis.
You are so right that Lipkin is a top-class scientist that we can’t afford to lose. He and his colleague Mady Hornig, who leads the microbiome study are major league researchers and we should encourage them.
I can see how Ian Lipkin has acquired a reputation for bluntness – the man does not hold back – but as you say, what a champion to have for our cause. Let’s not waste the opportunity.
http://www.microbediscovery.org
btw, you mentioned he probably knows Francis Collins as well as Fauci. In the interview he says:
“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. ”
Thanks again for a fantastic article.
Thanks Simon and all the work you’ve done to help Lipkin get his (our) work going on the gut in ME/CFS.
With the arrival of Lipkin and Hornig, and Hutchins, and CFI, and the 60 strong team at Columbia, and the working together with experts clinicians…
For the first time in 15 years I really feel we might be getting somewhere.
I sincerely hope that others with my diagnosis, their friends and families, will join in supporting the crowdfunding effort, and help retain Lipkin and his team and their interest in ME.
Can’t wait for the work of CFI to start being published!
Cort — A couple questions. First, does Lipkin believe that around 30% of CFS cases are caused by ANY pathogens (viruses, bacteria, or fungi)? Or does he believe that around 30% are caused specifically by viruses, meaning that other cases might be caused by bacteria or fungi?
Second, where are you getting that 30% number? Lipkin didn’t say that in this particular interview. My impression was that he believes pathogens are responsible for a majority of CFS cases. I’m a little confused why he would be so pumped for this microbe discovery if he thinks it will only uncover the disease mechanism for about 30% of CFS patients.
I think it’s a very loose figure. He mentioned something about may be 10% of people might have herpesviruses, 10% with enteroviruses, etc.
Then there’s the people with the bad microbes in the gut. I think he’s thinking that microbes in the gut – a different kind of pathogen, really, are pushing the disorder in the rest…That was my interpretation 🙂
Thankyou Cort.
Lipkins’ honesty is sincerely refreshing!
He has blown some fresh air through cobwebs.
I hope so much that our community own this and grab it and make it happen.
I can not wait for a few papers to be out that Lipkin and Hornig have been involved in.
Good research and findings also knock a few more bricks out of that funding wall that has been caused by oppressive stigma. Along with hammering congress and getting a champion.
I find it ironic that getting a champion in congress will be easier with a researcher of this calibre also pushing hard.
In this package we have a two pronged approach in our arsenal quality research and raised profile for congress.
I wonder if Lipkin has had a conversation with Ron Davis….
Go Columbia and Stanford….C’mon ME/CFS make it happen.
Can people outside US get involved with writing to congress and help the USA?
great article- the man sounded weary, angry, frustrated, fed up…..
I have one concern-he seems so intent on looking in the blood and gut but NOT in other tissues eg. he’s said he cant look in the intestine (as Dr Chia insists) because it’s ‘too invasive….patients wouldn’t want it…etc) In my experience patients would give their right arm to be involved in research. He just seems against it and it worries me that opportunities could be missed and, above all, it’s an unscientific approach! Surely the point of the scientific endeavour should be not to rule anything out as the interviewer was stating. Without wishing to be rude isn’t this a bit of arrogance from the great Dr lipkin? It worries me. I’d really like others’ opinions on this and I know that those of you out who are more knowledgeable than me.
Yes, that was mentioned in the interview. I was a bit surprised by that. Dr. Snell has emphasized how far people with ME/CFS are willing to push themselves in exercise tests in the cause of science. He’s stated it’s harder to get healthy controls to do the tests so I was surprised Dr. Lipkin suggested they might not be up to stomach biopsies. That Columbia would never agree to a study like that was a bit of a shocker too given there is research that suggests its a problem. However, Lipkin did believe that he’d be able to catch evidence of enteroviral infection in the feces – that was good news. It would be interesting to ask Dr. Chia about that.
Lipkin is from what I hear a very high-achieving and intense researcher. Some arrogance would not be surprising! 🙂
Well Dr. Pridgen did GI biopsies on FM patients as part of his clinical trial so it is not without precedent. Seems like such a weird thing to get hung up – I don’t buy for a second that patients “are not up to it” – I have had a stomach biopsy and it is a pretty small thing compared to some of the questionable “experiments” I have put myself through in the pursuit of health.
Good point! I’d forgotten about Pridgen’s biopsies. It’s getting so interesting isn’t it? There’s also the WPI biopsies of the duodenum which I believe is somewhere in the gut or connected to it. And there’s Chia’s biopsies. It’s getting so darn interesting…
I had a stomach biopsy years ago for gastro problems and it was no big deal. I’d be more than happy to do so again.
As for the barium enema – no thanks!
PS – Thanks for your take on the interview Cort – very refreshing!
Hi There Cort,
Thanks for this effort re “the Kitei-Lipkin interview.” I’m too old, sick and broke to be enthused but think you deserve a donation for this work. Please email me your snail mail address and I’ll send you a small donation. Thanks.
jim Ross
previous donar
Thanks Jim. I really appreciate it. I’m sorry you’re not enthused – maybe the blog stating that Lipkin found something really important will do it :).
Thanks for your help. Even small amounts are very helpful,
So do people agree that while Dr Lipkin has many stellar attributes his apparent bias IS unscientific- as I stated surely the point of the scientific endeavour should be not to rule anything out as the interviewer was stating. He says Columbia wouldn’t say yes but he hasn’t asked. It would be such a shame if after his research he finds relief for some of us but not for others because……he refused to do biopsies. Then it might be ‘case closed’… well if the great Dr Lipkin hasn’t found anything for those cases then no one can..
ps. I thought his attitude to Dr Chia ‘I’ve met the man’ was rather rude! This is intended as constructive criticism and not demonization by the way and I’m so glad he’s fighting for us.
If Lipkin finds microbiome problems and evidence of gut pathogens maybe he would be willing then to do them. Or maybe if he finds evidence of pathogens he’ll think that’s enough to prove that they’re there (??).
In any case he’s not going to do them now – which is no surprise.
I agree with you on Dr. Chia; the idea that Chia didn’t have the right controls wasn’t very persuasive to me.
With friends like these…
I agree that it’s fantastic 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 push for funding for ME/CFS from Congress.
On the autism topic, this surprised me:
“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…”
Didn’t we recently see findings of reduced amounts of digestive enzymes in autistic kids? I was guessing Lipkin would be interested in knowing more about the guts of autism patients as well…?
I was surprised by that as well.
Hmmmm. The scientists blame Congress, but Congress cannot make progress when the scientific and medical agencies do not fund research projects under the name of their peer review process. This is a bit of a blame game here.
We had a fantastic Congressional supporter in Rep John Porter in the last century, who made sure there were funds for CFIDS research back then. But the federal agency misspent the funds, there were hearings with angry Congressmen aiming sharp words at CDC, and Bill Reeves was the whistleblower.
There are other Congressional supporters of this disease now — but they will not get any further than Porter did, with the agencies condescending to us, and still blocking out proposals for work in this area. I did not listen to the interview yet, and I wish Lipkin well, but he ought to know that what those CDC and NIH folks might say, and what they do, are on the record for doing, do not match up. The CDC and NIH ought to be coming up with proposals and ways around their own barriers, instead of blaming the Congress.
You want a big idea…..
Laura Hillenbrand who wrote the best selling book Unbroken is being made into a movie by Angelina Jolie this December. I’m sure miss Jolie has met Laura Hillenbrand and knows her situation with CFS. If someone in this community could get to Laura Hllenbrand and get miss Jolie involved in the cause (a house hearing etc, etc) it would do more to advance awareness of our cause than anything done to date.
Secondly, I’ve said this before…Mr. Lipkin wants to go and do his own research on the CFS gut biome. That project already exists and he would just need to get time on the super computers at The American Gut Project run out of Boulder. These guys need to stop trying to reinvent the wheel and work within their available resources.
Can’t we get a rally or begin an online petition going to support Ian Lipken???
Personally, we are being taxed to death. Some of our taxes should be going to where it is needed.
Does anyone know how to start an online petition? Or maybe we can target one influential person in the government or newspaper industry, and we can flood them with letters; someone who will pressure the NIH or someone else to provide badly needed funding.
We can do this. I don’t know about the rest of you, but I’ve been sick long enough.