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’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.
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.
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.
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.
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)
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
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.
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.
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.
The high-dose (200/mg or more of oral thiamine daily) survey is closing soon – and will be open until Friday, May 7. If you are currently taking high-dose thiamine or have done so in the past, and feel comfortable sharing your experience, please complete the survey here. (Please do not start high-dose thiamine just to participate in the survey.) Find out more about high-dose thiamine in ME/CFS/FM here.
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