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Richard N. Fogoros, M.D.

The POTS Controversy, Continued - Dr. Levine Responds

By March 8, 2012

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After my recent post, "POTS - Who's The Real Grinch," I was contacted by Dr. Benjamin Levine, whose study I critiqued in that post. Dr. Levine made some excellent points, so I offered to publish a response from him if he was interested in submitting one. Here it is. (I have edited his response for brevity, and added my own comments at the end.)

Dear Dr. Fogoros,

Thank you for your blog post about our research on patients with POTS - I appreciate the opportunity to provide a few points of clarification regarding the study you specifically discussed, and some of the interpretations of the implications from this research.

1) Promotion of Research Findings. First of all, let me reassure you that  I have never "promoted" our work in any media outlets, and neither has anyone else in my institution. Frankly, I am not a big fan of media reporting of scientific data, and although I will speak to reporters when they call if I can provide any unique expertise, I do not search it out.   As I am sure you know, we have no control over what reporters say about our work. [Here Dr. Levine included a vignette describing how the news media routinely distorts scientific studies, a common problem with which I have had my own personal experiences. RF] Our audience for our papers is other physicians and scientists, who must interpret the data in light of their own experience and read of the literature. I caution you, and all patients who must get their information from the media not to over interpret what they read in the press or see on TV...

2) POTS is not caused by "laziness." The story told by many of the respondents to your article is quite typical of our POTS patients as well.  Most of the patients I see were very high functioning (like our astronauts, upon whom we modeled our POTS training program) prior to something happening - for some it is a viral infection; others an injury or other illness; some it is pregnancy, or the complications of delivering a baby.  This "sentinel event" causes one common thing to happen - it puts people to bed.

It is important to emphasize that even 20 hours of bed rest can induce loss of plasma volume, impaired baroreflex function, and orthostatic light headedness in many people. These symptoms are quickly relieved by lying back down and induces a very rapid downward spiral of orthostatic intolerance, hypovolemia (loss of plasma from the blood), cardiac atrophy (about 1% loss of heart muscle per week in bed) progressive bedrest deconditioning and ultimately incapacitation.  After only 2 weeks of bedrest or spaceflight, nearly 2/3 of people can't stand for 10 minutes!

It is also worth noting that earlier studies from our site showed that it was the most athletic subjects who were most impaired by even short duration (3 weeks) bed rest, with very long recovery periods. In fact, the volunteers who were least fit before going to bed, recovered relatively quickly in response to subsequent controlled training, generally within 2 weeks.  On the other hand, the most athletic volunteers, after 3 weeks of bed rest and 2 months of intensive training, still had not recovered to their baseline fitness. Intriguingly, we studied the same subjects 30 years after the original study, and found that, amazingly, not a single person was in worse shape 30 years later, than they were after 3 weeks of bedrest in their 20s.  In other words, 3 weeks of bedrest was worse for the body's ability to physical work than 30 years of aging! (see McGuire et al Circulation 2001).

Regardless of what caused the initiating event however, by the time the illness (or whatever happened) has run its course, the patients are left with profound disability (one patient in our study had not been able to even sit upright for more than 2 years) that seems to get better with our dedicated, focused, gradual exercise program beginning in the semi-recumbent position. The latter nuance is perhaps the key new wrinkle we have brought to the table in taking care of POTS patients.  Most POTS cannot tolerate the upright posture so starting sitting down or even reclining backwards is critical to their success.  And it is hard!  Many patients struggle to complete the first few weeks of the training program, which by the way begins with only 30 minutes per day, 3 days per week.  But if they push through the initial discomfort, they usually find themselves gradually feeling better and stronger.

This highlights a critical point -- We have never felt that a single POTS patient was lazy or irresponsible -- if it were easy to treat POTS with exercise, everyone would do it!! However when we apply a highly specific training program focused on making the heart bigger, the vast majority of patients feel dramatically better and many are "cured", meaning only that they no longer meet the criteria for POTS. I should emphasize though that maintaining fitness is a life-long goal for our POTS patients and we encourage them to consider exercise as part of their personal hygiene.  For those patients who have heard me speak, either privately to them as patients, or publically in lectures, they know that I STRONGLY emphasize that "cardiovascular deconditioning" is a real and well described process that has nothing whatsoever to do with laziness.

Please note that patients with POTS do NOT have autonomic failure. This is not to say that the autonomic nervous system is never compromised at some point in the process of progression of POTS.  However in the chronic phase, the hemodynamics are dominated by the physiology of cardiovascular deconditioning - and the evidence is that when we reverse this pathophysiology, by increasing the amount of blood the heart contains and can pump with each heart beat, that HR goes down, sympathetic nervous activity goes down, and the patients feel better.

Let me re-emphasize this point: CARDIOVASCULAR DECONDITIONING IS NOT THE SAME AS "JUST BEING OUT OF SHAPE"!!!!!  Anyone who interprets our data that way is misinterpreting our findings and our therapy.  I have great sympathy for our patients many of whom are extraordinarily debilitated, and I have been frustrated for much of my career trying to find therapies that work consistently.

3) On selecting patients for research studies on POTS. For our studies, we used standard definitions according to guidelines established by national and international organizations involved in autonomic disorders. [Here Dr. Levine offers a detailed discussion of the various medical conditions associated with POTS, and of the inherent difficulty all investigators face when determining the selection criteria for clinical studies on POTS. With these difficulties in mind I am convinced they followed accepted "best practices" at recruiting patients for their clinical trial. RF]

I know this may not be very satisfying to patients with these conditions, but reflects the reality of clinical research.  As you can imagine, the more restrictive the enrollment criteria are, the better the investigators will be at teasing out the specifics of their hypothesis, though the less generalizable the conclusions may be. As you and many of your readers may know, we are currently engaged in a much larger registry study out in the community, where >200 patients will be studied with many fewer restrictions in enrollment.  We hope that this study will answer the questions that we and others have about referral bias.

In our published studies, we enrolled a consecutive series of patients referred to my tertiary autonomic function clinic with a diagnosis of POTS.  In practice, we excluded very few patients with underlying disorders, in part because as you suggested in your review, most of these patients had seen many other doctors before being referred to me, similar to the patient populations at the Mayo Clinic or Vanderbilt. From discussing our patient population with those of other experts (and we often see each others' patients...) in the field, I am confident that our population is representative of the broad referral population of POTS patients.

4) Regarding "Grinch Syndrome." Finally, let me finish with a few words about the Grinch.  The vast majority of our patients who hear the term "The Grinch Syndrome" laugh and take comfort in the spirit in which it is presented. On the other hand, I understand that some patients who don't know me, and are concerned with being labeled by a name that is associated with being mean spirited, object to the use of the term Grinch Syndrome, and I respect those concerns.  Frankly, if I had to do it over again, I probably would have been more reluctant to use the term, and I want all POTS patients to know that we mean them no ill will.  There is no "fame and fortune" associated with this name and I get no personal benefit from using this term.  However I have seen how it is very effective at calling attention to what we have observed as the primary pathophysiology associated with the extreme incapacitation of these patients.  As I often tell my patients, the term "POTS" simply puts a label on the fact that the patient's heart beats fast when they stand up. The "Grinch Syndrome" focuses attention upstream, on WHY the standing heart rate is so high -- namely that the heart is "two sizes too small."

Based on simple population statistics, 2.5% of all the women in the world will have a heart that is more than two standard deviations below the mean -- the definition of "normal" in medicine. We believe that it is these women who are most at risk of getting POTS symptoms which can be induced incredibly quickly by even a brief period of bedrest.

Ultimately though, I would like to emphasize that humor is a powerful tool for healing, not only for patients with POTS, but almost any disease. We treat all our patients with the deepest respect, and are acutely aware of how debilitated they are, which we take very seriously. Mark Twain once said that "Humor is mankind's greatest blessing"; we believe it is an essential part of the healing process and hope that all of our patients smile when they think of The Grinch, and then go off to exercise!

-    Benjamin D. Levine, MD

COMMENT: Dr. Levine is a dedicated and careful researcher, and his body of work on POTS has advanced our knowledge of this condition significantly, and as a result thousands of people with this condition are being helped.  In addition, judging from some of the comments that appeared following my previous post, patients with POTS who have been under his care think extremely highly of him, and praise him for the respect, concern, and dedication he has shown them personally.

I still think it is too easy for a non-expert on POTS (like me) to interpret the study in question as indicating that POTS is somehow a self-induced disease, and judging from the comments my post received, that misinterpretation is indeed all too common among physicians.  Dr. Levine's elaboration on that point (above) clearly indicates that it was never his intention to suggest that POTS is self-induced. Rather, his findings indicate that a relatively brief period of bed rest, perhaps especially in in some highly active people (usually women), may be enough to bring on this condition.

In any case, people with POTS who need to convince their doctors and family that their condition is not something they brought on themselves, now do not have to rely on a document written by me  to do so (as several of them indicated they would in their comments). They now have documentation to that effect written by Dr. Levine himself.

I would like to thank Dr. Levine for his collegial attitude regarding this exchange, and for the effort he has made in clearing the air.

Read about postural orthostatic tachycardia syndrome (POTS).

March 8, 2012 at 11:13 am
(1) Claire says:

I appreciate Levine’s response. BUT—- 2 major issues:
1. The use of the term Grinch is offensive to enough people that I call on Levine to formally renounce this term and stop using it. Even if some of his patients think it’s funny, I feel confident saying that the majority of suffering POTS patients find it highly offensive and insensitive. HE NEEDS TO RETRACT THE PORTION OF HIS 2010 STUDY PROPOSING TO RENAME POTS.
2. Levine made broad sweeping conclusions and generalizations about the ENTIRE POTS POPULATION, which is comprised of many people with many causes for their syndrome. “As you can imagine, the more restrictive the enrollment criteria are, the better the investigators will be at teasing out the specifics of their hypothesis, though the less generalizable the conclusions may be…” So he states that his conclusions SHOULD HAVE BEEN MORE SPECIFIC. He is still kicking people out of his current study who have EDS, Mitochondrial disease, etc…and those people have POTS. I have spoken with them personally. He is not being inclusive. POTS is a syndrome, not a disease. If he wants to create a new disease based on his” 2 sizes too small” heart criteria and call it something else (preferably scientific, and not cartoon-ish), that would be great. But we ask that he stops making generalizations about all POTS patients in his study conclusions while doing exclusive studies. So again – I call on Dr. Levine to formally retract his conclusions from his 2010 study claiming that “These results suggest that POTS per se is indeed a consequence of deconditioning and that carefully prescribed exercise training can be used as an effective nondrug therapy for POTS patients.” and “We therefore propose the name the Grinch syndrome to focus on this pathophysiologic state.”
Thank you,
Claire Martin

March 8, 2012 at 12:01 pm
(2) Northeastern Physician says:

Sorry Claire — I have to come down on the other side of this one. I was in the registry, and all they needed to get me in was a stand test to show that I met criteria for POTS, and my doctor’s agreement to oversee the training (plus a quality of life questionaire). They did call me to follow up, and I guess that if patients have been diagnosed with other diseases that could cause a high heart rate, they will have some challenges interpreting the data, though if they use “intention to treat” all patients should be included. I also LIKE the term Grinch Syndrome as it helped me understand what was wrong with me. I really appreciate Dr. Levine taking the time to explain himself in more detail, and Dr. Fogoros for mediating the discussion. I am not offended, and am perfectly comfortable with Dr. Levine’s response. I will now smile even more broadly, not just at work, but each time I go to the gym!!

March 8, 2012 at 12:45 pm
(3) Erika says:

While I appreciate Dr. Levine’s expansion and response, I think the problem with “The Grinch” is that even though we, the POTS population, look into the study and discern the information for ourselves, our family and friends do not. Because they don’t have this condition, they are more willing to get their information directly from the media than we are and are more willing to accept what they are being told. It’s natural. After all, who takes the time to look up everything about every news story?

Without digging deeper into the actual study, the average person draws the conclusion that POTS patients are lazy, or caused themselves to be deconditioned, or ‘did this to themselves’.

After the segment aired, many, *many* POTSies came forward saying that they received calls from their family and friends saying things like “I didn’t know you had a small heart” or “I told you all you needed was to exercise more!” or “just ride a bike like that woman and be cured!”, etc.

While I personally don’t take issue with the nickname, I think it needs to be pointed out that ‘Grinch’ only applies to a SPECIFIC SUBSET of POTSies and shouldn’t be a renaming of the syndrome. It’s misleading, and only encourages the media to disseminate false or misinterpreted information about a very complex condition.

I very much appreciate that Dr. Levine took the time to respond, but I also think his response should be shown through the media as well. Had his information been presented during the airing of that segment on ABC News, there would have been a lot less harm done to the POTS community.

Whether he (or anyone else who works with him) has promoted the study or not, it’s BEEN promoted on the news now, and the responsible thing to do would be to publicly interpret, and represent the knowledge as it actually is, instead of how the media’s portrayed it. It’s already out there now, and a publicized clarification would go a long way to undoing the damage!

March 8, 2012 at 12:54 pm
(4) Jenna B. says:

NE Physician… if all they needed was a stand test and your doctor’s agreement to oversee the training, you were NOT part of the 2010 published research that is being discussed by Claire and the research that Dr. Fogoros originally wrote his About.com article about. You were probably part of the expanded POTS exercise program that Dr. Levine’s team is currently conducting, and as Dr. Levine mentions in his comments above, that follow up research includes more than 200 patients and has “many fewer restrictions in enrollment.”

I think Claire’s concern, and this has been echoed by many POTS patients (including many physicians and RNs) is that while the original research 2010 was on a very small group of patients (18 patients were included in the results, and only 13 of them had healthy hearts smaller than the control group), the conclusions that were drawn were stated in a way that made it sound like the entire POTS population had small hearts and deconditioning as the cause of their POTS symptoms. As a physician, I am sure you can understand that the heart sizes of 13 patients is not enough to restate the cause of an illness that impacts 500,000 to 1 million patients in the US alone. While the data was interesting, I think it was too preliminary to make such sweeping conclusions.

March 8, 2012 at 1:20 pm
(5) Northeastern Physician says:

Right Jenna — I was part of the “registry”, which is the larger community based trial (see my comment to the initial blog post about this issue). I am looking forward to seeing those results, and then hopefully we can discuss this again! I personally am satisfied by our esteemed Dr. Fogoros who after reading what sounds like an extensive discussion by Dr. Levine of the criteria for enrollment in his study, concludes that they followed “best practices.”
Lastly — I would bet that if you asked the Cleveland Clinic doc who did the ABC interview what exactly he discussed with them, that he would say he covered a LOT more than the 30 seconds they showed. I sympathize with Dr. Levine when he says that the media print what they want — not what we as doctors tell them! Time to let this rest!!

March 8, 2012 at 1:21 pm
(6) Eve says:

I have to agree with Claire. I take my hat off to Dr Levine and his team for everything they are doing in aid of POTS research, he is one of the few people who are dedicated to finding out more about this condition. But as a person with both POTS and EDS, with several close family members on their way to achieveing a dx, I have to say that hearing the term ‘Grinch’ was not only offensive but deeply saddening and disappointing. I do not have a small heart. It may be looked on by the minority as a comical phrase that lightens their mood, but I believe the majority feel as I do. I was bedridden for a long time with this and I went from fully functioning to bedbound in a matter of minutes. I, like many, have had only what I can call a ‘nightmare’ of a time with doctors and nurses and other health professionals, and one of the things that have got me through is my sense of humour. But I am sorry, I cannot from any angle, see the light side of this term. I know it was not meant in the context it is percieved, but as it is being detrimental to many with this condition I believe it should be removed from any articles it is contained within and replaced with a term that is sensitive to its sufferers and creates understanding for its readers. This said, I must agree with Dr. Levine on his recommendation of exercise. If I had of not pushed through this slowly then I would still be bedbound now. He is doing good for us and this must not be overlooked, but as we are the people he is trying to help, maybe he should do so by using a term accepted by ALL of us and not a small percentage. We should stand together and help each other through this, not be divided by a term that does not help ‘all’ of us.

March 8, 2012 at 1:30 pm
(7) Gena says:

Response to Dr. Levine: I have POTS, and I do not have a small heart; mine is actually enlarged. I politely ask that you retract the “Grinch Syndrome” term or simply stop using it. I do not find it funny.

March 8, 2012 at 1:43 pm
(8) Buffy Williams says:

Count me in as a voice alongside Claire’s. Offensive or no (though I feel that it is, for the record,) the “Grinch” term is inaccurate, seeing as the majority of POTS patients do NOT present small hearts, myself included. Inaccuracy in the medical community is surely something that should be avoided, correct? Why in the world would we rename a syndrome based on a symptom that such a small percentage of patients exhibit? Explaining the syndrome to each new doctor I come across is hard enough — having to combat preconceived notions that are frankly wrong is even harder.

Which brings me to my second question — how is he asserting that “patients with POTS do NOT have autonomic failure”? I (and many other patients I’ve spoken with) have been diagnosed with autonomic neuropathy — that is, nerve damage that causes problems to several systems; it is most certainly an autonomic disorder in MY case.

My point is that I still feel Dr.Levine is being harmfully exclusive to the POTS community, which is why I take offense to his studies’ conclusions. Though I am grateful that research is being done at all, the bottom line is that it is an extremely wide and varying syndrome, and what he purports is just not the case for all, or even the majority, of the patient community.

March 8, 2012 at 1:44 pm
(9) Priscilla Avery says:

1/2 I, myself, am not a POTS patient, but I battle with it everyday thru my daughters eyes. She was an athletic teenager, who had friends and a social life, and now battles and suffers everyday with this awful disease. While we do not see Dr. Levine as a patient, I battle with his research all the time. I live in an area that the doctors know very little about POTS, and when she was in the hospital the doctors doing research and came back to me with Dr Levine’s studies. I was told that she needs to walk every day because she is deconditioned. I was told that she needs to get up off the sofa/bed and walk even when she is dizzy. She should be exercising every day.. No matter how she felt. That this doctor that is an expert in the field said so. I was told that she does not need IV fluids and that she will be cured if she just does these things

March 8, 2012 at 1:44 pm
(10) Priscilla Avery says:

. I was told that she just has a small heart and that all is OK if she will just get up off her perch and exercise.. I have never been so mad in my life. I was sobbing. And my daughter was sobbing as well. She was crying because she felt that everyone thought that she was making it up and that she was lazy. When she looked at me and asked how they could think that she is lazy,when she was so active all the time. And how could she even think of exercising when she would stand up and pass out. What if she fainted and no one was around and she got hurt. It took a lot of time to make her understand that this is real. And that she did not have to do those things right now. She is not able to go to school anymore because she can not tolerate a whole day. She gets chest pain and shortness of breath, and her stomach hurts to badly. She cant focus on school work if she is feeling like she is going to be sick, or pass out, or that her hands are so cold and swollen that she can not feel her pencil, or that her eyesight comes and goes to do grey outs or black outs.. How is she suppose to focus when her heart is pounding at 180 beats per minute while she is standing or sitting.. Could you learn with all of that going on??? Please stop calling POTS the Grinch syndrome and please stop saying that it can be cured… It really makes our lives more difficult. Please, just treat your patients the best way that you can for each one of them, and not making broad statements about all POTS patients. They do not apply to the whole of the community. The one true fact is that all POTS patients are different and none of them present the same.. Please stop making statements that effect all of us. Thank you!!

March 8, 2012 at 1:45 pm
(11) Lori Mitchell says:

My 15 year old son has POTS and NCS and has never been told he has a small heart. We find the term very offensive, so appreciate it if the term is not used. We know the value of humor, but do not find this funny.

March 8, 2012 at 1:49 pm
(12) Stacy RN says:

Most of us were not bedridden at all prior to developing POTS symptoms. Our hearts are not “two sizes too small,” rather they tend to be enlarged, if any abnormality exists at all. It is NOT the fact that the Grinch term makes us sound “mean spirited” that offends us, it is the inaccuracy of the small heart reference. If Dr. Levine has found a small subset that have deconditioned hearts, then LET HIM STATE HIS CONCLUSIONS BASED ON THAT SMALL SUBSET. It is completely innaccurate to include POTS patients of all types in his conclusions when his criteria were so specific! I have Hyperadrenergic POTS with very high standing plasma norepinephrine levels, I have been swimming for over a year now and have to take extra beta blockers prior to swimming or my heart rate will be well over 100 bpm even when lying down for 3-4 hours afterwards. I have had cardiologists confirm that my heart is NOT small, and my cardiac ejection fraction is over 70%, indicating enlargement if anything! Exercise has NOT improved my POTS symptoms. It has not corrected the high NE levels, and so has not “cured” my POTS. Dr. Levine does say that laziness is not the cause of POTS, but he has certainly inferred that it is the patient’s fault if he/she is not “cured” by doing his exercise program; in one of his research papers he states that if a patient is not cured by his program that they are either not exercising hard enough, long enough, or both. That IS blaming the patient! Dr. Levine has done us a GREAT DISSERVICE by extending his Grinch theory to the entire POTS population.

March 8, 2012 at 1:50 pm
(13) Andrew says:

I understand Dr. Fogoros being taken in by the politeness of Dr. Levine’s response. Other autonomic experts have spoken to me about how they will not refute Dr. Levine’s findings publicly, although they disagree with him, because they are colleagues and see him at conferences. This does not surprise me, but is disappointing. POTS is not autonomic failure, true; it is Autonomic Dysfunction. We have dysregulation of blood pressure, digestion, blood pooling, pupil dilation, cerebral blood flow, respiration, etc. This is where the frustration lies; we are being included in a condition that we don’t have. We don’t have Grinch Syndrome. We have POTS. A distinction needs to be made, and it is not, to our great disappointment and detriment!

March 8, 2012 at 1:52 pm
(14) Suzanne Mortara says:

I add my vote to keeping the term Grinch Syndrome. It seems quite clear that this is not meant to be derogatory, and I for one am glad that Dr. Levine and his team are doing what they can to help us. Clearly there are a lot of strong, divergent opinions about this — but we all need to look at both sides of the coin, as Dr. Levine has so sensitively done in his remarks.

March 8, 2012 at 2:02 pm
(15) Stacy Reed says:

Suzanne, you are letting Dr. Levine’s “sensitive” remarks cloud the reality of his scientific misinformation? That is just silliness. I’m sure he’s a great person, but that doesn’t make his claims accurate.
And no, we won’t let this rest, because we are suffering with this, not Dr. Levine.

March 8, 2012 at 2:06 pm
(16) another RN says:

I don’t think any person responding to this blog should presume to speak for the entire population of POTS patients. I also think that the Grinch Syndrome moniker is gentle and humorous (and my kids love it too….). Give the guy a break — he obviously took a lot of time to respond carefully to Dr. Fogoros’ blog and to his patients. I don’t think anyone is being “taken in”. I think the post WAS polite, and deserves politeness and respect in return.

March 8, 2012 at 2:30 pm
(17) Buffy Williams says:

Politeness is not the same as accuracy, and I am not willing to “give him a break” just because he is polite, since he is also misrepresenting a syndrome that has taken the best years of my life from me.

Please do not misinterpret our remarks as disrespectful because we disagree. We do something this man cannot: we live with this syndrome every day. And what he says affects us directly, not just today, but for our foreseeable futures. Accuracy should be the golden standard for any endeavour, but especially the medical community, and in this respect, I think Dr.Levine should be held accountable for the inaccuracies of his studies and the clear harm it is doing in the POTS community.

March 8, 2012 at 2:54 pm
(18) Stacy Reed says:

Thank you Buffy, well said.

March 8, 2012 at 5:07 pm
(19) Barb says:

As a POTS patient, I think the problem often lies in media and marketing. Media will take what jumps out at them and run with it. Dr. Levine has indicated he is not pushing for media publicity and I believe him. However, when you use the term “Grinch” it conjures up a chuckle and then images of crankiness, loathing for others, deviant behaviors, and general mean spiritedness…and maybe heart size (although that’s not a dominate part of the Grinch story.) When I first heard the term, I thought psychological or behavioral disorder for all of the above reasons. Often, we are dismissed as having anxiety disorder, which is not the cause of POTS, even according to Dr. Levine. I’ve never equated Grinch to exercise either…he always made his poor dog do the labor, because he was a jerk and his heart was 2 sizes to small (humor attempt.) I think if we all walked up to 10 random people and said we had Grinch syndrome what does that mean, they would likely respond with some of the aforementioned attributes. I bet none of them would say exercise, which is the cornerstone of Dr. Levine’s research work. The media is no different. Perhaps this is why Dr. Levine may be an excellent doctor, but is arguably a poor marketing man. If I had been by his side while writing his final report, I would have suggested “Superhuman Syndrome” because we POTSies tend to be smart, athletic, driven, and POTS is our kryptonite. If researchers and doctors stick to technical and scientific descriptions for conditions and disorders they are investigating, it makes it harder for the media to latch onto potentially harmful terminology that can be used against the very patients they are working to help. I would love to see Dr. Levine amend his description to more appropriate medical terminology on his published reports and leave the name calling and marketing to us patients who have to live with this condition.

March 8, 2012 at 5:09 pm
(20) jodi says:

My 14 year old son developed POTS after having glandular fever, growing 5 and a half inches very quickly and hitting puberty all at once. He has EDS also. He was a promising young competitive swimmer who trained up to eight times a week prior to POTS. He has had many tests including cardiac related tests to look at the heart which showed a NORMAL size heart NOT small. While he still swims at a reduced level now and does gym for strength training he is nowhere near ‘cured’- if only that easy! We do not like the grinch term and find it offensive!

March 8, 2012 at 5:26 pm
(21) A. says:

I saw Dr. Levine for the first time in 2007. I got POTS during my 2nd pregnancy. It was like flipping a switch. Always so active, played every sport there was and when egg met sperm it was lights out. I could not stand up with out passing out, could hardly eat and did nothing but throw up. Was in the hospital every week for rehydration. Felt better during my 2nd trimester and was put on bed rest during my 3rd for High BP. I saw Dr. Levine many times and he listened well. But once he realized that his ‘exercise program’ was not helping me to get better. He was quick to let me know that, ‘There was nothing more he could do for me.” and “I was just going to have to learn to live with it.” This was heartbreaking. I have learned on my own what helps me. No thanks to him…….

March 8, 2012 at 6:57 pm
(22) KS POTS says:

I was very active when I was diagnosed with POTS. Matter of fact, I probably had it for years. I worked on my feet for years, 8-12 hour days. I thought everyone had headrushes like I had. I thought I was lazy when I couldn’t walk as fast as everyone else across campus during my college years and afterwards. I thought my anxiety and panic were always primary disorders for me, until I came across a Physician who suggested I might have MVPD. At the time I was diagnosed with that I also found out through proper testing that I had POTS. Exercise helps me, but it has in no way cured my POTS. I do not and will never have Grinch Syndrome. I think it is medically and metaphorically inaccurate. I’m am sad that Dr. Levine’s response seems to lack any compassion or respect (Levine Syndrome) for those who disagree with the usage of this term. I’m happy that some patients have responded well to his treatment plan. We just aren’t cookie cutters. I son’t think patients of any disease, disorder, or syndrome should be looked at or treated as such.

March 8, 2012 at 7:07 pm
(23) KS POTS says:

OK, maybe saying Levine Syndrome was tacky, but ouch, see, it hurts to be labeled!
Also, I wonder if it is a copyright infringment to use the term Grinch in such a capacity, such as Levine presumably makes income from attracting some patients thru the usage of this term.

March 8, 2012 at 9:46 pm
(24) Lauren says:

I appreciate Dr. Levine taking the time to respond to this article. I have corresponded with him and participated in his POTS exercise program, and I believe he is a very friendly and caring doctor. However, I don’t share his view that POTS is caused by deconditioning in all patients and, despite his well meaning intentions, I do not appreciate the use of the Grinch term.

I have read his research, and the research of others, with great care. I think the consensus in the medical community is that POTS is caused by a number of different things, some of which we probably haven’t even identified yet. Deconditioning is likely one of the causes, and even in patients whom deconditioning is not the cause, an exercise program can be very helpful.

In my case, I had a sudden onset of symptoms – totally healthy and cross country skiing UPHILL one day, to passing out, flushing, short of breath and vomiting the next day. I had no period of bedrest or deconditioning whatsoever. When I was first diagnosed with POTS by a respected neurologist in NYC, I was told that the latest research showed it was just deconditioning (this was a few months after Dr. Levine’s “grinch” article had been published. I was happy to hear this, as I assumed if I exercised my butt off, I would get better. I was sent to intensive physical therapy and did all of the exercises they gave me, except the ones that required standing up. After a year of exercis not curing me, I was fortunate enough to find a neurologist at Cleveland Clinic, who diagnosed me with POTS as a result of autonomic neuropathy caused by Sjogren’s Syndrome. I continue to exercise daily, but only IVIG infusions, which address the underlying autonomic nerve damage, have really helped me.

March 8, 2012 at 9:53 pm
(25) Lauren says:

I am concerned that other patients are going to miss out on an opportunity to find the underlying cause of their POTS, if their doctors are reading Dr. Levine’s conclusions, which have been repeated in major media across the US. Dr. Levine says he did not seek out this media attention, but even so, he DID give many of them quotes for their stories, and others from his team continue to be interviewed using the Grinch term and the small hearts theory.

When they discuss this research, I wish they would note that this is preliminary, and that there are many other things that are known to be correlated or associated with POTS. I think doctors should be taught to rule out more serious potential causes of POTS before they decide it is just deconditioning. Expert autonomic clinics and researchers like Dr. Levine may know to do that, but your local run of the mill cardiologist or family practitioner (and in my case, a very experienced neurologist) may not.

I appreciate Dr. Levine’s research and I respect him for doing this type of work, but I would really like him to stop using the Grinch term and I really think we need to see some larger scale research before we state that all POTS is caused by deconditioning/small hearts.

March 9, 2012 at 12:13 am
(26) Stacy Reed says:

Excellent comments, Lauren. Thank you.

March 9, 2012 at 3:00 am
(27) Cardiac RN says:

Unfortunately for most people with POTS, the etiology is not so simple. This theory does not account for the genetic associations that are commonly found in POTS, the high occurrence of comorbid autoimmune diseases, abnormalities on autonomic function testing with MOST POTS patients, the statistically high occurrence of celiac disease, gluten intolerance, and Gastroparesis among POTS patients, as well as many other neurological and endocrine findings.

I am an RN who works in Cardiology and I have yet to come across a POTS patient who was found to have a small heart. Typically their hearts are enlarged, or they are at risk for Cardiomegaly.

The problem with POTS being renamed The Grinch Syndrome is that doctors would see the constellation of symptoms, and automatically think that exercise will cure it. This is detrimental, and even down right dangerous for those patients whose POTS have other underlying causes.

The square peg just doesnt fit into the round hole.

March 9, 2012 at 4:48 am
(28) Australian post doc says:

I am a 31 year old cardiovascular researcher from Brisbane and had POTS for 5 years before my doc got me on the Levine protocol, which saved my life. I never met him, but thought his responses to Dr. Fogoros were thoughtful, scientifically appropriate, and compassionate. On the other hand, some of the comments left here are astounding in their level of anger and hostility. Completely inappropriate — you ladies should be ashamed of yourselves for creating a hostile environment. It makes it sound like you have some other agenda rather than wanting the best care for POTS patients. From this side of the ocean anyway, Dr. Levine has a lot of supporters, and the patients who keep harping and are embarassing only themselves. This low level discourse sounds more like your presidential elections than a group of concerned patients. You don’t have to agree — but at least keep the personal attacks out of the discussion.

March 9, 2012 at 7:18 am
(29) Australian post doc (again) says:

And Lauren — my comments didn’t refer to you, even though it followed yours. I thought the tone of your comment was much improved from some of the earlier ones — you stated your objections, but didn’t make it a personal attack.

March 9, 2012 at 8:20 am
(30) Claire says:

To the Australian claiming to be a doctor – Most commenters (including myself, the first comment) on here have thanked Dr Levine for his response, and just asked politely that he stop using the Grinch term to categorize all POTS patients as having small hearts as a result of deconditioning. We have pointed out the flaws in his conclusions, and noted the other researched and known causes for POTS. Others have told stories of pain and heartache as a result of this term. YOUR comments are hostile in nature, and if you are indeed a doctor, it would not surprise me due to your lack of sensitivity. Many (not all) POTS patients go through a horrible time being taken seriously in this country, and it may be different in yours, but to say things like “This low level discourse” and “you ladies should be ashamed of yourselves for creating a hostile environment” is creating a much more hostile environment and proving our point.

March 9, 2012 at 9:42 am
(31) Cardiac RN says:

I would like to reiterate my comment above. There are simply too many factors at play to make a blanket statement about the cause of POTS. Hereditary factors (EDS, NET dysfunction, etc), autoimmune diseases, and other comorbidities simply occur with too much frequency to be ignored.

We need MUCH more research in this area before we can even begin to understand the origins (pleural) of POTS, let alone the correct treatment. When there is evidence pointing in other directions it needs to be explored, which is why universities such as Vanderbilt continue on with their reasearch recognizing that this is not the answer for everyone. I applaud Dr. Levine for his research in this area, but unfortunately more needs to be done.

Time and more research will reveal the causes. Unfortunately in the meantime, the patients whose etiology is not cardiac deconditioning will be subject to improper treatment.

March 9, 2012 at 10:17 am
(32) Soraya says:

I appreciate that Dr Levine took the time to write a response to Dr Fogoros’ article. I believe that Dr Levine is a caring doctor who truly does want to help POTS patients. I think his work will continue to help POTS patients whose conditions have been caused or worsened by deconditioning from bed rest and small hearts. I do, however, wish that Dr Levine had addressed more of the issues brought up by Dr Fogoros  in his article.

Firstly, Dr Fogoros brought up the fact that many POTS patients have NEVER experienced any amount of bed rest. Dr Levine did not address this issue.

Secondly, the issue of terminology. Medical condition naming conventions usually name a condition after the researchers who discovered, treated or popularized the condition; after famous patients who suffered from the condition; or with a name that gives an accurate medical description of the pathology of the condition. “The Grinch Syndrome” meets none of these criteria. 

Dr Levine may well have meant the term in a spirit of lightheartedness. But, as he himself stated, for those who do not know him personally, it would be hard to understand his intent. As most of the world’s population do not know him personally, he can’t expect his personal interpretation of the term “Grinch” to be understood widely. 

As others have stated, the term “Grinch” has been -and has the potential to be- harmful to POTS patients. As it serves no useful function in furthering knowledge of POTS and can very well be harmful, I urge Dr Levine to reconsider his use of the term. If not with a formal retraction, perhaps quietly ceasing to use the term any longer will suffice. Perhaps.

To be continued…

March 9, 2012 at 10:19 am
(33) Soraya says:


Thirdly, and most importantly to me, is the issue of generalization. Dr Levine stated that his restrictive criteria make his study’s conclusions “less generalizable.” I would like him to suit his words and not conclude that all cases of POTS are caused by deconditioning and small hearts, as the POTS literature clearly shows that conclusion is not accurate. Simply stating in his research papers that he is investigating a small subset of POTS patients and that, therefore, the conclusions of the studies can only be accurately applied to that small subset would, I think, relieve most of the controversy.

Thank you to both Drs Fogoros and Levine for your time and thoughtfulness in writing these articles. 

March 9, 2012 at 11:05 am
(34) Priscilla Avery says:

I was re-reading the article and all of the comments that followed. However, what I did notice is a comment in the initial article that I believes sums it up completely..

I still think it is too easy for a non-expert on POTS (like me) to interpret the study in question as indicating that POTS is somehow a self-induced disease, and judging from the comments my post received, that misinterpretation is indeed all too common among physicians.

This is the core of the issues, and because of the fine doctors Grinch Syndrome, This is furthered by not only doctors, but the public in general.

March 9, 2012 at 12:49 pm
(35) JC says:

From Dr Levine’s response, above: “Please note that patients with POTS do NOT have autonomic failure. This is not to say that the autonomic nervous system is never compromised at some point in the process of progression of POTS.”

It is these kind of generalizations that have created such confusion. The implication is that the ANS is compromised *after* deconditioning takes place. In my case, it was certainly the other way around.

From Dr Levine’s response: “Most of the patients I see were very high functioning (like our astronauts, upon whom we modeled our POTS training program) prior to something happening – for some it is a viral infection; others an injury or other illness; some it is pregnancy, or the complications of delivering a baby.  This “sentinel event” causes one common thing to happen – it puts people to bed.”

Ok, so it seems Dr Levine is talking specifically about people with POTS who are also quite deconditioned by its effects. And who have a small heart. And whose POTS cause is treatable or manageable through exercise. And who do not have one of the many underlying POTS causes or variations that have been excluded from the study.

What is *not* clear is precisely what percentage of POTS affected people this represents. 50%? 15%? 5%?

I am glad Dr Levine has done this study and helped so many.

But I do wish it was clear, in his published articles, that he is talking about a specific group of POTS people (the “Grinch” subset) and not about POTS as a whole, because his publications are being misinterpreted not just by our friends and family, but also – and more harmfully – by medical professionals. We are being given the wrong treatment, or being refused treatment. This lack of clarity is impacting on our health.

My doctor is in a position of power over me. He is also a fallible human being. I want him to be clear on the whole story. That is all.

March 10, 2012 at 2:11 am
(36) Stacy RN says:

Thank you to all my fellow POTS sufferers who have tried to explain why Dr. Levine’s narrow description of POTS, which he erroneously is trying to have renamed the Grinch Syndrome, is so damaging to us in trying to find help in the medical community and in obtaining disability. We are not attacking Dr. Levine, rather we are fighting back against the misrepresentation of POTS. The “doctor from Australia” had the most negative and disparaging commentary of all, while he accused us of being so. “This low level discourse sounds more like your presidential elections than a group of concerned patients,” was quite unprofessional, making me seriously doubt his claim to be a physician. (I’m assuming it’s a “him,” as no self-respecting woman would refer to those commenting as “you ladies”…)

We just want the distinction made between the subset of deconditioned atrophied hearts causing temporary POTS-like symptoms (which you are free to call the Grinch Syndrome if you like!) from the other causes of POTS, some of which are permanent and not cured by exercise, as much as we might wish it could be!… that is all we are asking for. Thanks to all those with POTS who do not fit the Grinch criteria, who are willing to stand up and ask to be heard…

March 10, 2012 at 2:35 am
(37) Stacy RN says:

Also, ‘another RN’ stated: “I don’t think any person responding to this blog should presume to speak for the entire population of POTS patients.” ….. but that is exactly what Dr. Levine is doing, and wrongly so! That is all we are trying to say… please don’t lump the entire population of POTS patients into the subset of those with small deconditioned hearts, as it is simply and factually false. Please don’t presume to speak for the entire population of POTS patients simply because there are some that respond well to exercise. There are thousands of us out there who have other etiologies for our POTS and we need the medical community to take us seriously and look for the root cause rather than simply telling us to exercise.

March 11, 2012 at 11:20 pm
(38) Rusty Hoe says:

As another Australian I can say that diagnosis and treatment are as equally problematic as in the US. We face the same lack of knowledge and expertise along with a lack of understanding as to the impact living with a chronic illness such as POTS,or any Dysautonomia, engenders. Having read over this and the preceding article it is clear there is a significant disconnect occurring at many levels. The issue of the ‘Grinch’ labelling is significant for patients as a whole and whilst there may be some who like it there are far more who do not. It is not a question of humour. As someone who prides herself on finding the funny in the absurdity of living with chronic illness I do not find this a funny or accurate description. In the wider community ‘Grinch’ is not associated with small heart size, it is a derogatory term and associated with questionable personality and behavioural traits. As such it should never have found it’s way into any scientific article. And it’s continuing use (ie Dr Fu’s recent presentation in Texas) is highly disappointing and demonstrates a lack of understanding for the wider patient population.

March 11, 2012 at 11:21 pm
(39) Rusty Hoe says:

With regard the exercise issue. Few patients would suggest that exercise is bad for the condition. It is recognised as an important factor in any overall management plan for the condition. What many patients have issue with is the idea of exercise as a ‘cure’ for the condition as part of the deconditioning, small heart theory (which has been well addressed above). With POTS (and Dysautonomia) representing a heterogenous group of patients with varying aetiologies it is difficult to see exercise as a cure. Given Dr Levine’s response it is clear that exercise is a management technique and not a cure for the condition, except for perhaps a small portion of the overall population. To say that it is a cure is akin to saying that insulin injections are a cure for diabetes. Neither is true. Whilst I as an invested patient understand this, the wider community and sadly many in the medical establishment do not. Yes as patients we must advocate for our own health care, but there are many who are simply unable to do so and rely solely on the advice of their doctors. This is where problems begin at a practical level with this paper. There are numerous stories on the forums from around the world where patients have been told, based on this paper, that all they need to do is exercise, that failure to improve is based upon their lack of effort. For this to happen to one patient is disheartening, to hear of it happening repeatedly is disastrous.

March 11, 2012 at 11:22 pm
(40) Rusty Hoe says:

It must also be noted that whilst Dr Levine states that by necessity the subjects in his study must be selected in this manner, this process is problematic. Such, selection processes can leave such a specific subject pool that it is nolonger representative of the overall patient population. To generalise the findings from this highly specific group to a whole patient population is therefore inappropriate. For example at a conservative figure of 500,000 patients in the US, to generalise the small heart findings of 13 patients seems to lack even basic validity.
The issues of ANS involvement is not one of ‘failure’, which would lead to the likes of PAF, it is one of dysregulation or dysfunction. Whilst many patients may not experience a progressive failure of their ANS a vast majority have autonomic involvement, hence why POTS is categorised under the banner of Dysatuonomia.
In many respects minus the Grinch issue and the failure to address the fact that these findings are representative of one small subgroup of patients, many patients would never have taken note of this study. Even with these issues, few would discount the worth of exercise or not rejoice that for some patients this program has been a godsend. But there are fundamental problems with the article, and the way it has impacted on the lives of many patients. Whilst the media does have a significant role to play in this, Dr Levine and his group have a responsibility to correct inaccuracies and understand the impact, unintentional though it may be, it is having on the lives of those it is supposed to aid.

March 12, 2012 at 3:57 am
(41) Stacy RN says:

Thank you, Rusty Hoe, for summing things up very nicely for the vast majority of POTS patients. Your posts were much appreciated :)

March 14, 2012 at 9:25 pm
(42) philly mom says:

I, also, truly appreciate the comments by Rusty Hoe. While it is always commendable for a serious investigation and research into this otherwise “invisible” condition, the published results of this study have had, perhaps, unintended consequences. Also — inaccurate — insofar as blanketing the population of POTS patients. Personally, I have had tests under the care of a cardiologist and I do NOT have a smaller heart, and did NOT have a precursor “bed rest” incident prior to the initiation of these symptoms. The Grinch title in no way identifies me and is only confusing. And while my exercise regiment definitely helps to manage my symptoms, in no way am I the person I was before this condition (activity, focus, and energy-wise). It is important Dr. Levine listen to the response and comments of the POTS population he is trying to assist. While the media plays a part, the conclusions of the study are also at issue.

March 15, 2012 at 8:58 am
(43) Martha says:

I have some issues with Dr. Levine’s response.

1) I did not have a precipitating event. I did not have an injury or an illness that put me in bed before the POTS “showed up”. I was in the best shape of my life and going to the gym several days of the week. Slowly, I went from having a low-normal heart rate to full blown POTS. So much so that it was the POTS that took me out of the gym. It was the POTS that put me in bed, not the other way around.

2) I do not have autonomic failure, but I DO have autonomic dysfunction. This is not the fist time some “expert” has confused the two.

3) I am enrolled in Dr. Levine’s study. It is more than difficult. It does more than provide discomfort. It made me sicker! The exercise program made me worse!! I am not my specialists (who sees only Dysautonomia pts) only patient to have this experience. When I contacted Dr. Levine’s staff about it, they blew me off and did not take me seriously. I got a response of the nature of, “When you feel better, try again.”. Uhm, I do not have the flu or a bug that’s going to go away on its own. I do am not magically going to feel better. That’s why I tried this study….too bad, a yeah later I am in the worst shape of my life, the sickest I’ve been.

And since I know you’ll read this, Dr. Levine…I am the most compliant pt there is. I didn’t just give up! Your program starts too much, too fast, too hard, especially for those of us who have been sick so long. You HAVE to come to OUR level if you really want to help us.

While I do believe exercise and conditioning is important for POTS, I can not, and do not, believe it is as cure.

March 20, 2012 at 2:55 am
(44) James says:

The fact that exercise improves the hemodynamics of POTS does not prove a contention that the condition is entirely the result of deconditioning.

Dr Levine’s study states that they did not identify any autonomic abnormalities in POTS patients. However much of the published work on POTS has identified QSART abnormalities, MIBG reuptake abnormalities, and more recently in a subset of patients, increased plasma Angiotensin II (where patients have reduced cardiac size as a response to abnormal blood volume regulation). None of these were looked for in the ‘Grinch’ paper.

Also animal models of zero gravity exposure demonstrate upregulation of eNOS rather than just cardiac atrophy.

Another assumption made is that bed rest is a common factor before onset of POTS when quite often it is not. A quick browse through any POTS patient forum indicates that the onset of the condition is varied and in many there is absense of significant bed rest.

The paper also does not explain why 80% of POTS patients are female – a ratio commonly found in a variety of autoimmune diseases.

To my mind a ‘cure’ does not translate to objective hemodynamic measurements, but absense of subjective symptoms and the correction of the underlying disease states that contribute to the etiology. My concern is that this improvement of symptoms may not result in the avoidance of relapse as longtitudal studies are currently lacking.

We need to be careful about whether the loudest voice equates to the most exact or replicable science.

We need to also be mindful that Dr Levine and his collegues are professional researchers who deserve respect from the patients they are trying to help.

March 23, 2012 at 8:26 am
(45) John says:

I don’t know what my heart size is but I do know when I came down with POTS I wasn’t under any type of bedrest or extended lying down other than your typical 8-10 hours of sleep you get get every night. I was a trained athlete so maybe that made me more susceptible under Dr. Levine’s definition but it doesn’t necessarily make sense to me why I would have gotten sick in the absence of prolonged bedrest.

March 23, 2012 at 8:55 am
(46) John says:

One thing also that I don’t understand is why is a significant proportion of POTS patients echocardiograms normal? Certainly the cardiac MRI is more accurate than the echocardiogram maybe a doctor can elaborate on this but wouldn’t an echocardiogram be able to detect atrophy of the left ventricle that is two standard deviations smaller than a normal heart and/or a reduced stroke volume.

Additionally, why don’t all patients who have heart failure suffer from POTS?

August 23, 2012 at 8:14 am
(47) EmilySunshinecoast says:

Hi this is a message for Australian Post Doc, I’m from the Sunshine Coast and am trying to find someone to help with POTS can you contact me? My email is emilyspencethomas AT gmail DOT com

September 8, 2012 at 12:28 pm
(48) Giselle Martes says:

THANK YOU MARTHA! My experience was identical to yours. I felt totally abandoned when I became so much sicker. I said it was too much to just jump in and do their program. Why not work my way up to their beginning level? No. It’s either you do it exactly their way or you’re out of the program.

September 14, 2012 at 1:33 pm
(49) Lori says:

Hello, I was inpressed with Dr, Leveign, and I was just recently diagnosed with POTS and was very scared when I couldnt get out of bed. My heart was racing to 180. I would like to know what exercises would be suitable for a POTS oatient like myself, I wasn’t too active, but I started to walk to get my blood pumping and get into shape. POTS is not understood by many, and family does not unerstand thhe severity of the illness that took me to the heart floor for five days.

January 9, 2013 at 5:08 pm
(50) Cari says:

I am 34, mother of two, was working out 2-3hrs a day, at least three days a week,, was having GI issues and had my gallbladder removed, From the time i woke up ive had horrible tachycardia,, went to PCP, cardio, EP Cardio long story short, had numerous EKGs Echos, blood and finally tilt table test I was confirmed to have POTS, my heart is not small, I was not in bed, and no one has found why, BUT I say all of that to say this,, just bc a few ppl had small hearts or was bed redding for a couple weeks doesn’t mean the majority of us do, I’ve interacted with lots of potsys and have yet to hear either if those. And in days I do too much I’m in bed for days.
No person should make those types of.. Standards, reasons, explanations,, without including a large majority of potsys AND NOT exclude ANY Pots patients. Now as far as all the work he’s done,, that’s great!! We need more drs willing to research this.

August 26, 2013 at 10:37 pm
(51) Jeana says:

POTS can start with ANY disruption in a persons normal life,no matter the gender, age, or prior history of illness’. My daughter has POTS as a secondary to being sexually abused by someone she loved dearly. This snowballed after many stressors in her life as she bravely came forward and it had set her”as they assume” from PTSD to POTS. She was a cheerleader, a goalie soccer star, very popular. So for her sexual abuse caused this, as stress took its toll on holding it in. Then what came after of letting it out. But I encourage ALL to tell if you have ever been abused regardless! For she would’ve developed it anyhow, even if she’d not had the courage to tell for she was already feeling the symptoms and keeping most a secret too until POTS got worse and now suffers with IBS & GERD. Some specialists have went off “the grinch syndrome” bull rap on her & would not listen- the nerve of some of these DR’s !! WOW !! More research !

December 11, 2013 at 8:52 pm
(52) Julie says:

My son was playing competitive hockey about 5 dys per week, long boarding, snowboarding, etc when he was struck by this. No laying around being unconditioned caused this for him!

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