Fabulous Article Deconstructing Dr Levine's Study

[roxie]

I saw this article today and thought it was really great:

http://heartdisease.about.com/b/2012/03/05/pots-whos-the-real-grinch.htm

[issie]

Great article. Thanks for posting it!!!!

[L4UR3N]

Thank you for sharing!

[HopeSprings]

LOVE! Thank you.

[songcanary]

Gutsy article. I really like this guy!

[jenglynn]

THANK YOU for making my day, Bananas. So well written, concise, and logical. What is all the talk about the media? Has the Grinch Syndrome been publicized lately?

I so love that guy right now- had to go back and look at his name.. Dr. Fogoros- you, sir, ROCK

Jen

[kmichaelson]

Thank you for posting that! I've been so disappointed that when POTS finally gets in the news, it has to make it sound like we're all just out of shape and need a bit of exericise to perk back up. (Maybe it's not that bad, but I feel like that's the impression people will walk away with.) It's wonderful to see a doctor explain and verify what we've experienced to be true!

[kmichaelson]

THANK YOU for making my day, Bananas. So well written, concise, and logical. What is all the talk about the media? Has the Grinch Syndrome been publicized lately?

I so love that guy right now- had to go back and look at his name.. Dr. Fogoros- you, sir, ROCK

Jen

Hi Jen, There were some stories on ABC news recently that talked about Dr. Levine's studies and promoted exercise as the cure. Here's a link to the story: http://abcnews.go.com/blogs/health/2012/02/29/what-astronauts-have-taught-doctors-about-fainting/

[sue1234]

I like this article explaining from the perspective of us POTS patients, but at the same time feel a little guilty, now. As Martiz pointed out, Dr. Levine called her and was a really nice guy. We didn't know until his call that he also believes in other causes of POTS. Maybe he'll begin a new study on POTS to address the people that don't fall into the "small heart" issue. That would be awesome!

[foggy_brain]

The real problem may be this: "None of these patients had measurable abnormalities in their autonomic nervous system." If this finding can be reproduced by others in so far as heart rate & blood volume go, then indeed it's many of us patients who are the losers if we've been led down the wrong path by an inordinate focus on something that just isn't essential to what makes us sick. And what makes us sick? Who knows how many causes there are?

Dr. Levine may be right about it being deconditioning that's causing the heart rate increases. I like many others was in excellent shape when the brain fog and fatigue started hitting me. Much much later I found out that a whole day of intensive exercise would much reduce my symptoms -- for a few hours, but that does not go very far in explaining anything or really help me in anyway or get me off disability.

Dr. Fogoros may be mistaken about "the correct diagnosis is made" for those of us who don't have any measurable abnormalities -- if there are no cardiac abnormalities for many of us then that's damning to the notion of POTS as something pretty common. (And that's not fair to those who are really struggling with racing hearts and dizziness.) If POTS is made too inclusive then it's not going to be taken seriously.

In my case my tilt table test heart beat increase was 30, yeah my heart is racing but so what, is that just a symptom of being skinny or out-of-shape or what? So, I was happy to hear that such increase is normal (not from POTS doctor, though). I'm still really confused about POTS symptoms because I do see in this forum that there're other folks with problems very much like mine.

I think Dr. Fogoros committed a grave error by not acknowledging that Levine's conclusion may be essentially true, possibly many POTS patients don't suffer from cardiac dysfunction of any sort, and that make's it almost impossible for us to get taken seriously as a tremendously important medical problem. Dr. Fogoros certainly does not know at all what's wrong with POTS patients or even if POTS is at the heart -- so to speak -- of their medical problems. Poor judgement in my opinion.

It is worth thinking about what happened for Chronic Fatigue Syndrome, the murine virus just ended up hurting the cause of people who suffer from unexplained fatigue. In any case none of what I've seen, call it what you want, has helped me overcome the brain fog that's really my main symptom. But I continue to follow POTS and CFS and other things because you never know.... Some it is so eerily familiar, just can't find the answers.

[ramakentesh]

I found this article earlier.

While no measurable abnormalities were found in the POTS patients examined in the 'Grinch' study - none were really looked for: no MIBG reuptake scan was conducted despite 20% of POTSies having reduced reuptake; no QSART tests were conducted despite 50% of POTS patients having abnormalities; no angiotensin II serum essays were conducted despite 20-25% of POTS patients having elevated levels; no AChr receptor antibody essays were conducted despite up to 25% of patients having low titers for these.

I think nearly all the other research bodies agree. That exercise eventually improved POTS in these patients doesnt in anyway support the conclusion that deconditioning was the fundamental etiology. As the doctor states, there is no explanation for why it takes normal deconditioned patients a week to improve and it took POTS several months, nor why POTS patients appeared to relapse without continued improvements in exercise or why many who have been involved in the program have reported that they relapsed DESPITE continuing the program (there are many of these on the net).

Further most POTSies ive spoken to dont report a period of being bedbound before onset of their symptoms. I certainly didnt. Quite the opposite I was exercising too hard, training for a running race.

My take on the whole thing is that the research all means well and it confirms that exercise helps. We suspected as much but now we have the evidence. I think the conclusions made concern me because they arenty really supported by the data and because in science a person should be their own 'theories worst enemy' - they should be its most critical analyist, holidng it up to continual scrutiny before publishing, rather than almost kind of trying to sell the idea. maybe this has to do with funding.

If their is a cardiac origin of POTS it will be most likely related to cardiac sympathetic deconditioning, intrinsic abnormalities in the sinus node or perhaps reduced NET.

[L4UR3N]

I loved this article but it worried me a little when I clicked to see what he wrote about defining POTS. The article itself was very good, but it did make the statement that (I'm loosely quoting here) "unlike other types of dysautonomia, SSRI's are not useful in POTS". The therapeutic effect of SSRI's in POTS has not been established yet. Some people with POTS do seem to be helped by them, while others arent....kind of like beta blockers.

[jenglynn]

Thank you sharing that link, Dizzy... On one hand it's great that people are talking about it- but definitely not the impression we want to leave people with (most especially uneducated doctors!!!). Of course, maybe it's the case for SOME people but I would think it is the extreme minority.

Jen

[martiz]

I like this article explaining from the perspective of us POTS patients, but at the same time feel a little guilty, now. As Martiz pointed out, Dr. Levine called her and was a really nice guy. We didn't know until his call that he also believes in other causes of POTS. Maybe he'll begin a new study on POTS to address the people that don't fall into the "small heart" issue. That would be awesome!

Hi Sue,

I am pretty sure he did not say that there were other causes of POTS. What he said was that he was aware that people could have more than one thing going on including the POTS. I feel certain that he was not changing his position which is that POTS is caused by deconditioning.

I will check my post and make sure that I correct the language - I didn't mean to give the impression that he has changed his position.

Marti

[jangle]

I think it is unlikely there is one cause of pots given the diversity of presentations. However there is utility in making progress in any one pots patient subgroups be they low flow hyperadrenergic etc etc. Bevusse while the specific etiology is different it's likely to be centered around a central theme. I.e. a flaw at one end of the parasympathetic nervous system is creating a cascade somewhere else that leads to pots and everyones pots might come from different inciting instances but the cascades are largely similar somewhere along the line. And in knowing that that can be where therapy lies.

From the other jogging study, 62% responded to exercise, but there was no difference between the responders and non responders in terms of norepinephrine, stroke volume, blood volume, or other relevant parameters. This suggests that for the responders perhaps exercise hit one level in the cascade chain or didn't need to as the cascade was started by one of these inciting factors. But in the non responders perhaps exercise didn't touch the true cascade inciting event which could be anything distended connective tissue, entrapped autonomic nerves, or malformed tenuous structures among other things. I really wish a n extensive study were funded to really go after the pathophysiology be cause I believe it is nit an impossible task and there are consistent enough physical symptoms to suggest good candidates and ideas.

[Chaos]

Jangle- When you finish med school, I'll be happy to be in any studies you want to run!!

[issie]

Jangle- When you finish med school, I'll be happy to be in any studies you want to run!!

Sign me up too.

Issie

[bellgirl]

Me, three!!!

Jangle- When you finish med school, I'll be happy to be in any studies you want to run!!

[Clairefmartin]

I like this article explaining from the perspective of us POTS patients, but at the same time feel a little guilty, now. As Martiz pointed out, Dr. Levine called her and was a really nice guy. We didn't know until his call that he also believes in other causes of POTS. Maybe he'll begin a new study on POTS to address the people that don't fall into the "small heart" issue. That would be awesome!

I just wrote all about how another POTSy and I actually went nuts on ABC and the other POTSy was the one who spoke with Dr. Fagoros (who is super cool). Hope its ok to post this, but its a really interesting story. She spoke directly with Levine as well, who is very nice, but refuses to stop using the Grinch term.

http://stoppotsvirginia.blogspot.com/2012/03/abc-news-aftermath-junk-reporting-and.html

[issie]

WOW, that was pretty powerful. I hope it brings about some awareness.

Issie

[sue1234]

Martiz, sorry, it was Rama that said Dr. L said in their conversations that POTS could have other causes. Also, Jenglynn said the site mentions that he doesn't just focus on de-conditioning. I got confused on who said what. Me, confused?? It definitely won't be the last time! LOL

[Clairefmartin]

His study group specifically did not include patients with autonomic dysfunction, and in fact the study states that, “ All patients met the inclusion without exclusion criteria for POTS”.

We emailed him to ask about this and this was the response:

This definition was contained in his NIH grant application and is as follows: "[p]atients with postural hypotension secondary to autonomic neuropathy (diabetic, amyloid, familial), spinal cord lesions (syrinx, traumatic), or degenerative central nervous system disease (multiple-system atrophy, pure autonomic failure, Parkinson’s disease) will be excluded. Similarly, individuals with hypotension stemming from identifiable hypovolemia, dehydration, hemorrhage, vomiting, medications (a- or b-adrenergic antogonists, diuretics, venodilators), or endocrine abnormalities (Addison’s disease, hypothyroidism) will be excluded."

These emails took place less than a month ago. Levine actually seems to want to seclassify POTS as being a small heart/deconditioned illness - and call everything else what causes it. I hope that makes sense. But even if he does so - he shoudl call it something scientific - not name it after a publicity stunt inducing cartoon character. I know POTSies with small hearts and they are offended by this name, as is understandable.

I just can't believe Dr. Fagoros (About.com) is the first to speak up, and it took 2 years. How did this get published? The concuclusions are rediculous (in my opinion). Where are the other Mayo, Vandy, etc...reserachers that see all the various causes of POTS- and why dont they speak up?

[corina]

Claire, just so that you know: it's okay to post a link as long as you don't ask people to read it (that would be be soliciting which isn't allowed per the forum rules). hope this helps

[kmichaelson]

I just wrote all about how another POTSy and I actually went nuts on ABC and the other POTSy was the one who spoke with Dr. Fagoros (who is super cool). Hope its ok to post this, but its a really interesting story. She spoke directly with Levine as well, who is very nice, but refuses to stop using the Grinch term.

Hi Claire, Thanks for posting that and for all your efforts to get ABC to refocus their story! I'm so grateful that you guys were able to discourage them from using the term "grinch" at least! I might have to share your blog with my family members who keep sending me the ABC story so they can see what an inaccurate or incomplete picture it presents. Also, that's blurb from Dr. Levine about excluding everyone with other POTS causes from the study is really amazing. Granted I'm not a scientist, but it seems awfully obvious that if you screen out anyone with noncardiac reasons for their POTS, your findings are going to be pretty skewed in favor of the "small heart" theory.

[Clairefmartin]

Claire, just so that you know: it's okay to post a link as long as you don't ask people to read it (that would be be soliciting which isn't allowed per the forum rules). hope this helps

That does help, thank you!!! I dont make money from my blog, its just an awareness tool, but I still dont like to post it without permission