Fabulous Article Deconstructing Dr Levine's Study

[martiz]

Wish I had seen this before Dr. Levine called me. I would have spoken up. Phooey.

I guess I can send an email to his staff telling them how upset I am.

I know there has been much discussion about whether the "grinch" name is damaging or not. I am deeply offended by it because of the damage that the name Chronic Fatigue Syndrome has done to that population. Using fatigue in such a way has caused the diagnosis criteria to be skewed to anxiety and depression resulting in ineffective and harmful treatments (GET and CBT - Graded Exercise Therapy and Cognitive Behavioral Therapy). The proper term is ME - Myalgic Encephalomyelitis which scientifically explains most of what is going on with that illness.

Marti

[kayjay]

Dr. Levine has influenced others. I did not want to go back to the Mayo clinic because it is so far and expensive for me. I saw a cardio at Johns Hopkins who sees pots patients. His recommendation? Wanna guess? Dr. Levine's protocol. Like others I was fit when I got sick and still try to exercise 3-5 times a week. I want to keep my joint etc. healthy. For me, no actual improvement in my POTS symptoms with exercise. I just do what I can without passing out because I think moving is good for your body.

[roxie]

And Dr Levine's response

http://heartdisease.about.com/b/2012/03/08/the-pots-controversy-continued-dr-levine-responds.htm

[jem15]

thanks for posting both articles. so good to hear another dr reply to this and address some of our concerns. now i wish the autonomic specialists would do the same. And then interesting to hear Levine's reply.. I'm glad at least some discourse/exchange happened.. i just hope it continues and gets out to the media..

even with his explanation, though I'm glad he tried to clear some things up, i'm still not satisfied. I think whether or not he meant for it to happen, it's out in the media, people are being misled. Responsible thing for him to do would be to explain to the media outlets that it's just his theory based on his one study, and not true for all pots patients( in regards to the small heart/not autonomic dysfunction and exercise theory) But that's if he really believes that.

It's not that I mind his theory/treatments being shared, it's the way the info is being presented, and how no other theories are being considered, while his seems to be presented as fact. I wish we could hear more from the patients his program doesn't work for, here and there a patient will post back to say once his exercise protocol didn't work, he had nothing else to say to them. But I'd be really curious to see how he'd respond to them in a public forum/comments or whatever... Everything just seems so one sided.. and it seems like he really doesn't see how this is hurting the POTS community.

[L4UR3N]

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 people whose POTS have OTHER underlying causes. If doctors were to reach the conclusion that all POTS is caused by cardiovascular deconditioning, they will stop testing for other causes (such as adrenal insufficiency, celiac disease, other neurological disorders /brain tumors, autoimmune diseases, etc etc etc.)

I believe that only a small subset of POTS is actually caused by cardiovascular deconditioning. Improvements in quality of life can come from exercise, but for most people, the etiology of their POTS 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 and gastroparesis, abnormalities on autonomic testing with MOST POTS patients, the statistically high occurrence of celiac disease or gluten intolerance among POTS patients, and many other neurological and endocrine findings.

The square peg just doesnt fit into the round hole.

[L4UR3N]

Also just wanted to add that persistent tachycardia (such as POTS) will actually lead to an enlarged heart called Cardiomegally. For those whose etiology is not cardiac deconditioning, the addition of rigorous exercise will not cure the tachycardia and would in fact hasten this condition.

I tried to post a comment on this article but it did not show up yet. I'm guessing it needs to be approved first?

[janiedelite]

Hi Rissy2D,

I haven't seen any unapproved posts come up. I'm not sure where your comment went. Perhaps just try again?

[issie]

Also just wanted to add that persistent tachycardia (such as POTS) will actually lead to an enlarged heart called Cardiomegally. For those whose etiology is not cardiac deconditioning, the addition of rigorous exercise will not cure the tachycardia and would in fact hasten this condition.

I tried to post a comment on this article but it did not show up yet. I'm guessing it needs to be approved first?

Rissy,

Post it again. Really want to read it!!

Issie

[foggy_brain]

Dr. Levine wrote a mostly gracious response to Dr. Fogoros's ill-considered piece -- but Dr. Levine continues to belittle patients with his belief in the curative power of humor, especially his humor, tailored as it is to gain press attention.

That aside, were these two learned people more inquisitive, they'd help us understand better there may be more than "sentinel events" to the desire to lie down. Something has gone wrong, what on-going processes could that be?

Isn't it a fascinating medical question that people declare them sick with brain fog or extreme tiredness, but essentially don't seem depressed? That's a difficult enough situation to explain to a doctor. Neither of these guys really help us with that.

Many of us are just as haunted after we've reconditioned, so the heart deconditioning is perhaps not even interesting, just something that's very hard to avoid for us who struggle with that other on-going "event" that wants to make us rest. That is an event that I'd like to assure Dr. Levine about is much more than "initiating" for some of us. Still, thanks for reminding us to exercise.