The CFS Advisory Committee announced via its listserv on October 23, 2013 that Dr. Gary Kaplan has been appointed to the Committee. Kaplan brings an interesting point of view to the Committee, but advocates have reason to be concerned about how well suited he is to the current political landscape. Dr. Kaplan was kind enough to speak with me this week, just as his appointment was being made official.
The Kaplan Center for Integrative Medicine was founded in 1985, making it the oldest integrative medicine practice in the DC area, according to Kaplan. From the inception of the Center, Kaplan’s patients have included people with CFS, fibromyalgia, and chronic pain. Dr. Kaplan is board certified in family medicine, pain management and acupuncture. He is a clinical associate professor of family medicine at Georgetown University’s medical school, and co-directed a grant from NIH to incorporate integrative medicine into the curriculum. Kaplan has also participated in two efforts at NIH’s Consensus Development Program (acupuncture and meditation), which is of interest given that the CDP is currently planning an Evidence Based Methodology Workshop on ME/CFS. With his clinical experience and his work with NIH, Kaplan brings unique expertise and connections to his work with CFSAC.
The Kaplan Center treats patients with CFS and dozens of other diseases. Kaplan describes it as a “buck stops here practice.” But he says that the diversity of symptoms presented by his patients are different manifestations of a unified underlying cause: microglia activation. Microglia are immune cells in the central nervous system, responding to infection and sending powerful signals through cytokines and gene expression. Kaplan says that CFS, fibromyalgia, depression, post-traumatic stress disorder, and other conditions are all neuroinflammatory disease. The multiple labels and categories obscure the origin of disease. Kaplan says that many different triggers can up-regulate microglia cells. The more these cells are activated, the easier they are to activate, and a vicious loop is established in which the microglia are chronically activated resulting in inflammation of the central nervous system.
Kaplan is not the only proponent of this theory. There is evidence of microglia activation in Alzheimer’s, Parkinson’s, and some infections. Microglia activation in ME/CFS is also not a new idea (see page 12 of the report from the 2011 NIH State of the Knowledge Workshop). Kaplan says that microglia activation is a process, not an event. He uses detailed patient histories to identify the origin of the process, whether it is an infection or a traumatic childhood event. Next he focuses on sleep, looking for undiagnosed sleep apnea, narcolepsy, or restless leg syndrome. Kaplan points out that a recent paper suggests that the brain clears neurotoxins during sleep, underscoring the need for good restorative sleep. The next step is adding meditation, and then identifying food allergies and sensitivities. Through it all, Kaplan emphasizes the importance of close involvement and partnership between doctor and patient. Dr. Kaplan’s approach to treating microglia activation in depression and chronic pain will be published in May 2014 in The End of Pain, a book aimed at the consumer audience.
There are signs, however, that Kaplan’s views are very different from those of ME/CFS experts and advocates. For example, Kaplan says myalgic encephalomyelitis is a good descriptive term, but it is too limiting because it does not get to why there is brain inflammation. Kaplan told me that 60% of his patients have psychiatric comorbidities, and he makes no distinction in treating depression or PTSD or CFS or fibromyalgia because he says that all share the neuroinflammatory condition of microglial cell activation. Given that advocates and experts believe the inclusion of depressed patients is one of the major weaknesses of the Fukuda definition, Kaplan’s insistence on seeing both conditions as different manifestations of the same disease process will not be popular.
I asked Dr. Kaplan about the role of exercise, given the recent controversy over exercise testing and the CDC multisite study. Kaplan says that exercise is well-established as down-regulating microglial cells and is essential to treating these conditions. However, he also says that mitochondrial dysfunction and other imbalances could impair patients’ abilities to exercise, and need to be addressed first. Dr. Kaplan says that a patient shouldn’t exercise until the body is ready, and so the approach must be tailored to each individual patient. Once the patient is deemed ready, exercise is an essential part of recovery. In our conversation, Kaplan did not specify how readiness for exercise could be assessed.
Dr. Kaplan told me that he has not followed ME/CFS politics at all. This is a legitimate concern for advocates, given the upheaval caused by the IOM case definition study and the unresolved allegations of intimidation of voting CFSAC members. We know that it takes new CFSAC members time to come up to speed on the numerous issues and substantial history of government efforts (or lack thereof) on ME/CFS. Dr. Kaplan faces a very steep learning curve at a time when multiple controversies require the full attention of the CFSAC.
Me thinks Dr. Kaplan should dust off his textbooks concerning cognitive bias. Does he really think the population that he serves is representative of everyone diagnosed with “CFS” or “ME”. Is there anyone in the “CFS” world that has a functioning, inquisitive brain?
The underlying message seems like you were interviewing Elizabeth Unger: anti-depressants, GET and CBT…”Makes no distinction in treating depression, PTSD, CFS, Fibromyalgia…”. Another “lumper”; maybe he’d like to toss in Chronic Multi-symptom illness, autism, and chronic lyme disease as well.
re: politics…Great another noob going to Washington. Just what we need another pliable apparatchik being wowed by the CDC and NIH.
I appreciate your fair reporting/commentary.
Thank you, Jennie.
Ohhhhhh, dear!!!! This is disconcerting that Dr. K seems to be ‘not up to snuff with current research’ and ‘out there’ — with his philosophies of not being specific to ME/CFS. This appointment appears NOT to be to a positive direction for the ME/CFS sufferers . . . perhaps that is the intention. Ohhhhhh, dear!!!! More of this??!!!
Let’s be really aware . . . as to the politics that we are up against–and we are fully aware of the politics!!
Today I had my check-up/check-in with my wonderful Internist doc re ME/CFS. Among other reports from specialists, I also gave my doc copies of the letters and information about the 35 experts/researchers standing up for the CCC and persons with ME/CFS–and voicing their concerns re the IOM contract.
My doc was interested and pleased to have this information and told me of a Psychiatrist doc saying that the ME/CFS patients/people are all just crazy. My Internist doc replied to the Psychiatrist — yes, just like all the MS patients/people are crazy! He is standing by us knowing full well of the biological illness and life restrictions it imposes.
I further told my Internist doc that one has no idea how political it is in medicine/health care until we are thrust into it with chronic illness–I further said that it is (almost) criminal what is going on . . .
Hmmmmm . . . respectfully speaking, perhaps the psychiatrists that are of this mindset–completely biased against persons with ME/CFS–and, indeed, trying to influence others in the medical field with this MISinformation, ought to seek psychiatric help themselves–‘to get to the bottom’ of what is driving their abusive, destruction and harmful treatment of a patient community.
Jennie, did you have a sense that Dr. Kaplan knows very well what post-exertional malaise is? To me it is the most crucial aspect of the illness a physician I am to trust needs to be fully aware of.
I don’t have a sense of it one way or the other. We spoke for less than half an hour, and I described what he said about exercise in the piece. That’s all I know, unfortunately.
What side of the fence on you sitting on Jennie? Why showcase the opposition? Could have been more critical. Piece seems as though you are lushing over this doctor’s background.
He is NOT a bona fide researcher in sleep medicine nor a board certified neurologists. Mouse models results do not necessary transfer into accurate human physiology activities as science has proven.
He uses detailed patient histories to identify the origin of the process, whether it is an infection or a traumatic childhood event. What? Right, Concept borrowed from improper and poorly defined psychological studies concerning potty training or sexual assault as cause for these illnesses…merely quack psychobabble.
Kaplan told me that 60% of his patients have psychiatric comorbidities, and he makes no distinction in treating depression or PTSD or CFS or fibromyalgia because he says that all share the neuroinflammatory condition of microglial cell activation.
Show me the peer review scientific research articles backed by replication studies that ME/CFS and Fibromyalgia is caused by microglia activation. Theories not backed or confirmed by science as fact and acted on as proof is merely practicing woo, woo medicine.
Ever hear of the term, sleeping with the enemy? I don’t lend credence to doctors who are merely glory hounds and lack the credentials of a top-tier researcher.
What’s next for an HHS panel appointment a Shaman practioner?
The role of microglia in ME/CFS is a hypothesis. However, Kaplan is not the only person to support that hypothesis. That said, I’m not aware of any published data on it in FM or ME/CFS.
@Ecoclimber
Maybe Kaplan and Unger will be the start of a New Age sub-committee at CFSAC focusing on crystals, meditation and seances…
Thanks Jennie,
Kaplan sounds fine on the treatment/research end. I think his theory of neuroinflammation makes sense and while there isn’t specific research relating to ME/CFS out there on that I know of several ME/CFS/FM researchers who believe the microglial could be key. This is not a woo-woo theory at all. Some people might want to check out Van Elzekker’s theory of microglial activation and vagus nerve infection.
It’s unfortunate he’s not up to speed on the politics but it sounds like we’re getting a guy with lots of experience in treating ME/CFS and whose looking at from a pathophysiological basis…That’s pretty considering the options….
There are so many doctors with better knowledge of the physical aspects of ME/CFS who could have been selected. Where did they get this guy? Is there any way of finding out how and why he got nominated? He might not prove to be a hindrance or problem on CFSAC, but is he likely to be an asset to the patient community by being there? I doubt it.
Billie
I have filed a FOIA request for any nomination letters, etc.
The 35 ME/CFS experts and researchers made a very strong and clear statement in their letter to Secretary of HHS–and are now joined by 16 additional ME/CFS experts in their strong stance–these actions are unprecedented in the history of ME/CFS.
Let’s stand up with these experts who are standing up for us. Kaplan does not fill the bill as an ME/CFS expert at all and that can be potentially very harmful to the ME/CFS community.
The microglia hypothesis is not disproved, but neither is it proven. There is no proven hypothesis about the cause of ME, nor is there substantive evidence that these wide range of suspected conditions that might involve microglia are even closely related. There are however many good hypotheses that have substantive evidence to support them.
One of the biggest issues we have faced all along is that as something new is discovered, someone stands up and says this MUST be the cause. Then at some later point we discover it might be part of the pathophysiology, but it was not the cause, or even that it failed to be a replicated finding.
Exercise is beneficial in many conditions. In a large heterogeneous group, with few ME patients, it might indeed be the case that they see it as necessary. I do agree though that at some point at nearly full recovery some careful exercise might help some ME patients, and that this has to be decided based on the individual.
I would like to know how 60% psychiatric co-morbidities were diagnosed. Using what symptoms? Using ME symptom to diagnose such, on an ME patient, is a nonsense. The same is probably true for other disorders. Very few psychiatric diagnoses are evidence based, they are nearly all based on semi-consensus diagnostic criteria and subjective judgement. In other words there is a major risk of bias in the process. Standard diagnostic questionnaires do not have any proven validity for diagnosing psychiatric disorders in ME patients. Such limited validation as has been done is suspect at best.
One thing I would like to know of any appointee is what do they understand about evidence based medicine and its limitations? Almost no psychiatric disorder has an evidence base of its existence, and all psychiatric research proceeding on the basis the category is valid still lacks scientific credibility. EBM was developed for assessing clinical interventions, not for evaluating science. Using it to evaluate science outside of its original scope is an abuse of the process. In any case EBM itself has not been scientifically validated.
There is no objective evidence that exercise helps ME patients when approached in ways used in other disorders. None. We are slowly getting more evidence from exercise physiologists on what is wrong and what to do, and are probably still years away from anything unassailably definitive. Any claim to the usefulness of exercise, without strong diagnostic criteria and clear objective results, is NOT Gold Standard evidence based medicine.
We need to know what every “expert’s” grounding in science is as well, not just medicine. We need to know what criteria they will be given for collating, prioritizing and evaluating evidence. Bad criteria equal poor outcomes. Its not just about the experts.
Are they free to reject bad criteria? Or will they be compelled to follow bad criteria? If we are not careful we will see yet another example of biased based medicine.
Every argument I used on CFSAC appointees applies equally to any future IOM appointees, of course.
Jennie, thank you for providing this insight into Dr Kaplan’s approach to M.E. @Ecoclimber, I would argue that it is essential for us to understand where new CFSAC members are coming from, and that what Jennie has provided us is really valuable information that advocates can act on.
I do find it really terrifying that after so many decades, someone like Katherine Sibelius still has the power to install a total newbie – with a totally flimsy grounding in the SCIENCE on M.E. – and a conflict of interest – on the CFSAC committee. Indeed, I would argue, Jennie, that your opening paragraph could be further extended. You said, “Kaplan brings an interesting point of view to the Committee, but advocates have reason to be concerned about how well suited he is to the current political landscape. ” I would substitute: “KAPLAN BRINGS AN OUTDATED POINT OF VIEW TO THE COMMITTEE, AND ADVOCATES HAVE REASON TO BE CONCERNED ABOUT HOW WELL SUITED HE IS TO THE CURRENT BIOMEDICAL SCIENTIFIC LANDSCAPE, AND TO THE POLITICAL LANDSCAPE”. And yes, he has a juicy conflict of interest, with an upcoming book, and a whole clinic devoted to “lumping”-without-scientific-justification.
Of course it might be argued that anyone who specializes in diagnosing and treating M.E. biomedically has a conflict of interest. That argument kept M.E. guru Dr Peterson, for example, out of the Ampligen deliberations, ensuring that a man who can identify with 70-80% accuracy the Ampligen responders – could not add his very valuable insights.
Bottom line, Katherine Sibelius’ boss needs to hear about this incompetence in her nomination of Dr Kaplan to CFSAC – when CFSAC has been riddled by appointments which have kept us in the dark ages, spinning our wheels. When the committee repeatedly has so many neophytes, it’s no wonder that a dysfunctional proportion of time is spent trying to educate these blissfully ignorant members, and producing repetitively the same recommendations. WHY do we need to keep educating ignorami, when we have a list of 50 clinicians to pick from?
So thank you Jennie, for a very valuable article and interview.
“Kaplan says myalgic encephalomyelitis is a good descriptive term, but it is too limiting because it does not get to why there is brain inflammation.” I really don’t get this argument. Since when does the name of a disease have to indicate WHY or WHAT is causing it? To me the name ME is similar in fashion to ALS. They both are descriptive terms indicating what is happening in the body, but they don’t point to its cause. Do we know WHAT causes ME or ALS for that matter? Does the name cancer indicate what is causing it or even describe what is happening in the body? Do we have to know the cause of a disease before we can name it? If that were the case, most diseases would never be named. Yes, there is brain inflammation in ME, but there is also so much more. Myalgic Encephalomyelitis fits the bill perfectly for the disease described in the CCC and that which is experienced by millions around the globe. Why the fuss about this name? Let’s stop obscuring our reality and get down to the business of researching ME and getting some help to patients.
I’m not thrilled with his point of few, but I can’t say I’m dismayed. I was expecting much worse after all that has been going on. And his theory is based around inflammation in the central nervous system, which is what encephalomyelitis is. He acknowledges that exercise is not automatically good, but I worry that he is not cautious enough when he sees people are being ready. For example, does he use an envelop method. I’m skeptical about the comorbid psychiatric disorder, even though deregulation of the nervous system can cause this. It just seems higher than anyone else has found. I’d like to know how he diagnoses this psychiatric disorder. I’d also be curious to see how he diagnoses ME/CFS. IOW, what symptoms does he recognize.
Wellll–me thinks it’s really time to ‘come out of the closet’ with this horrid disease–have reached out further to more contacts and saying it is A-OK to post on their FACEBOOK page–someone has also TWEETED–and they are all asking their friends to send to their friends–let’s go VIRAL–no pun intended!!!!
YES! My thoughts exactly — who nominated
him? And who does the choosing of who among the nominated gets on? I would like to know!
@Jennie Spotila Did Sibelius in fact install him as was mentioned above? I should have thought Sibelius was too busy trying to learn how a computer works.
And Ecolimber, I think Jenny did a very fine job of laying Dr. Kaplan out for view. The dissection belongs in another essay, perhaps by someone else. One thing — I’d like to meet his “cured” patients and I’d like to meet the psychiatric cases.
Actually, so far it seems Kaplan has grasped the idea of immune activation in a minimal way but has no further understanding of the mechanisms already published. And can he back up his projections of 60% psychiatric co-morbidity in a serious scientific way, or is this just schmoozing.
@Maxine
@Ecoclimber
The charter states that the Secretary or Secretary’s designee appoints voting members to the committee. Nominations go to the DFO, and I expect that decisions are made at the level of the Assistant Secretary based on recommendations from the DFO’s office. The Secretary would then have the final say. I have filed a FOIA to get the nomination letter(s) for Dr. Kaplan.
I’m a patient of Dr. Kaplan. Overall, I think he’s a good doctor who really wants his patients with ME/CFS to improve and tries different approaches. For instance, LDN is something he is using with many. He’s certainly much more familiar with ME/CFS than most doctors, though I would hesitate to call him an ME “expert.” I think he does bring strengths to the table.
As far as the microglial activation theory, I see it as just that, a theory. Let’s test it out and see how treating microglia helps, but let’s be open to other theories too. You can get a better idea of the microglial activation theory from his video lectures: http://www.kaplanclinic.com/dr-kaplan/chronic-pain-depression-3-part-video-series/
Thank you so much for sharing your thoughts as his patient! I really appreciate your willingness to do so.
@Jennie Spotila
Sure! Thanks for all you research on the blog. I also wanted to comment on the concerns about exercise. From my personal experience as a patient, Dr. Kaplan has never pushed exercise with me. In fact, I can’t recall his ever suggesting it to me, probably because it is obvious that it is not something I am able to do, at this time.