Save the Drama for Your Mama (and the Grinch)

I am fairly new to the Facebook online support community for Dysautonomia and POTS.

This has nothing to do with this post. But I like it.

I have been a member of DINET for years, but stayed away when I was feeling well - it had become depressing and was scaring me that I would end up like others on the forum (ironic, since I now am!).  But the forum was always kind, safe, supportive, and closely monitored - and I feel the people on there are super nice and not the types to attack others who have differing views.  Nothing has changed, if you are looking for smart people to help you navigate resources and deal with dysautonomia, you should check out the forum.  I became active again (it had been so long I had to re-register!) while half dead after all my pulmonary embolisms and in the hospital in early 2011.  I'm glad I did, and I still am on there a few times a week reading and sometimes posting, because it is such a great place to find support.

After getting out the hospital last fall and becoming a Twitter fanatic, and realizing that I was not going to be out running marathons any time soon, I found a whole support network of tweeps as well.   This is another valuable resource for chronically ill of any kind, just pick your disease and search it, and loads of people and tweets come up.  I use #POTS, #Dysautonmia, #spoonie, and #chronicallyawesome the most.


Twitter is what spawned the idea for Team Fight POTS, and STOP POTS (this site), as I had been reading blogs and searching facebook, and not really finding much in the way of support, it was all very disjointed.  So I thought it would be great to work together, and see if anyone wanted a central page to post their blogs, articles, and info related to POTS.  Team Fight POTS is an information only page, not a support group, not a Non Profit, and we have an awesome group on there contributing with some of the best bloggers about Dysautonomia and POTS (in my opinion). I love that we all came together to promote each other, and listed all the organization we could think of so people would have a "one stop shop" to find information.  That was the idea behind this blog as well - a site to promote awareness about issues that I felt somewhat qualified to write about, even if its just based on personal experience, but to also link others to resources all over the web, and start linking up with people in my area.

I truly believe the reason we have so many issues with awareness, research, and a "patient needs" driven agenda is that there are many small groups that are NOT working together, and teaming up to accomplish the same goals.  We are a HUGE group of patients - an estimated 500,000 - 1 million POTSies, and who knows how many with Dysautonomia - I have read estimates of 2-3 million.  That is a lot of people!  Think of what we could do if we supported each other, promoted each other, and worked together.

Unfortunately, it turns out there is a ton of drama online within the support groups, especially on Facebook.  And unfortunately, there have even been people bullying, kicking people out of groups for opposing views on things like the Grinch syndrome debate, and even faking their own deaths and other craziness recently.  I have been kind of shocked by all this, I guess out of naivete.  I try to stay out of it, but get emails and Facebook messages regarding people being bullied, picked on, and put down for their views or situations.  I'm one of those "I want to protect and help everyone" kinds, and have gotten pulled into a few situations because friends were being taken advantage of, bullied, or information that is being put out there is damaging and hurtful, and I feel the need to speak up.   This kind of stuff is divisive and hurtful, and has saddened me to see.

This drama and the mean spirited debates that are going on are unacceptable.  We are all dealing with a life altering, disabling, and crippling chronic illness.  Keep the politics, religious views, name calling, faking of things, and anything else out of the online groups, and stop attacking each other!   I'm calling on all of us to STOP THE DRAMA.  We really need to support each other, and lift each other up when down.  Posting about your views on your own pages are one thing, but attacking people in the forums and groups is just plain nasty.

There is also a divide in the community over the whole Grinch name and Levine research issue.  To set the record straight, because it seems that my VERY strong views on this are being questioned and talked about to others behind my back (drama!), I want to outline my feelings - and Dr. Levine, I hope one of your avid supporters shows this to you.  My views are based on a series of legitimate and logical science based questions that I would love answers to.  I already explained this in a blog post in more detail here, so I'm not sure where the confusion lies.

To set he record straight in regards to the Levine doctrine, as it has come to be known:

1. I agree that exercise is a great tool and treatment for some (if not most) people with POTS.  For people with MCAD and Masto diseases, exercise can trigger anaphylaxis, so it is dangerous.  I think exercise needs to be overseen by a POTS/Dysautonomia knowledgeable doctor or PT, and structured based on the patients unique health situation. 
2. I DO NOT believe that POTS is caused only by deconditioning.  I don't believe this, because the research doesn't support it.   POTS is a heterogeneous syndrome - not a disease, and is caused by many things.  I have written extensively on this blog about that, with citations that back it up.   The bedrest in most POTSies occurs after POTS, not before. 
3. A small subset of POTS patients apparently are deconditioned and have small hearts.  But that is a very small subset!   And do they really have POTS?  Part of the definitions many researchers use to define POTS in the literature (1,2) excludes people that are deconditioned or have been on bed rest.  They have a separate issue - not POTS, but DECONDITIONING.  If you are on bed rest, and develop POTS symptoms, then you don't have POTS - you are deconditioned (like the astronauts!).  You can exercise your way back to health. 
4. The famed Levine study only looked at a group of 18 POTS patients, 13 of which had small hearts, who were compared to a control group of 16. He excluded all the POTS patients with autonomic neuropathy, which comprises an estimated 50% of all POTSies (3).  He also excluded anyone with EDS, MCAD, or any other underlying condition, even hypovolemia.  This is an extremely small, exclusive study group.
5. His study and methods were fine for studying that exclusive small group of patients.  But his conclusion that every single POTS patient out there has a small heart, and thus the syndrome should be renamed after the Grinch, is so unscientific and outlandish I still don't understand how it made it through the peer reviewed journal process.  Again, see my previous post for details.
6. Just to briefly qualify myself - I never finished my doctoral degree in Biology because I had to drop out of graduate school when POTS first hit me.  But I am a published scientist, had worked in research labs for years, and written extensively for publication.  I also had taken graduate level statistics geared towards scientific publication.   I am not some random chic Googling things and drawing conclusions.  I spend a lot of time reading and researching the science end of POTS/Dysautonomia, and if I was physically able, would try and get a job in a lab again - I have hopes to go back and finish my degree once I am able physically.
7. So I have nothing against Dr. Levine personally.  I do, however, have a major issue with his sweepingly generalized conclusions, and the ongoing use and promotion of the highly offensive term "The Grinch Syndrome."  I also have a problem with the idea that exercise is a magical cure for POTS.  This has been damaging beyond belief, I hear from POTSies constantly that they are blown off and not receiving treatment because their doctor or the staff in the ER that Googled POTS came across the Grinch study (or the story in the NY Times, the Wall Street Journal), and they are dismissed.  Stories like these from MSNBC further fuel the misunderstanding by saying, "Maybe all the Grinch needed for his heart condition was to hit the treadmill. A new study shows that exercise helped improve the symptoms of patients with "Grinch Syndrome," named for the Dr. Seuss character because most sufferers have hearts that really are "two sizes too small."  MOST SUFFERERS?  What data backs this up?  The stories and the actual study mention the estimated 500,000 people that have POTS, and that this exercise program may be a cure, but does not mention the strict details of the exclusive nature of the study - thus making it extremely misleading.
8. Dr. Levine, we now have to launch an entire campaign to re-educate the medical profession, the public, and families as to the fact that POTSies are not lazy, they will not magically be cured with exercise, and they have an underlying cause that is producing the syndrome that is POTS.  That cause may be cardiac atrophy for some, but for most of us it is not.  Finding that cause is absolutely necessary to make sure they do not have something progressive and life threatening.  And until the medical world gets rid of the name POTS and denies the existence of any other cause besides small hearts, it is borderline unethical to push and promote this idea that is a theory in progress, and is no where near being a fact, when no one else in the field from the major research centers supports it, or is even studying it that I'm aware of (would love to know if I'm wrong on that!).
9. Naming a disorder after a cartoon character is not only unheard of in the science world, but naming it after a mean spirited Grinch is a double whammy of negativity that POTSies don't need.   I have spoken with POTS patients with cardiac atrophy, and they don't want to be called Grinches either.  The vast majority of us don't, and just because a very few find it funny, does not make it ok.  It has made life harder for many, and they (we!) should be respected.   We respect that the vast majority of racial minorities find racial slurs offensive, so we do not use them.  We should do the same for the disabled and chronically ill, or people living with a serious illness.  Words have power.  They shape and mold perceptions, and I don't understand the need to call POTS the Grinch Syndrome, it upsets so many people - why not just drop it? 
10. Lastly (10 is a nice even number for a list), these questions about the Levine research that are being posed by many are legitimate, scientific questions.  They need to be answered!   Step up please, Dr. Levine and associates, and answer some basic and valid questions.  I, and others, submitted similar questions and participated in the recent TADA meeting with Dr. Levine, and he did not answer any of the following:

•  Are you proposing to rename POTS to only include those with small hearts? 
• Why do you insist on using the term Grinch when it upsets so many, and causes the medical profession and the media to trivialize POTS?
• Do you believe that once an underlying cause is found, that the patient no longer has POTS? 
• If so, are you thus proposing to redefine POTS, and how?
• If POTS is a syndrome, it encompasses a collection of symptoms, and the diagnostic criteria that you co-authored in the 2011 Consensus Statement (4) states that POTS is heterogeneous in nature.  Do you really believe that?  Your name was on that published statement by the Autonomic Society.   How do you reconcile your theories/conclusions with this?

Maybe some day I will get answers to these questions.  Until then, I plan to continue to fight for understanding of this confusing and serious condition we call POTS, and to try to educate myself and all of us on the research going on.  Doctors and researchers are funded by our tax dollars and contributions, and their work directly impacts our care and treatment.  We have a right to know, and they have a responsibility to be held accountable for the science they publish.

So until next time - keep looking for your POTS cause - and if you want to know how I feel about something, or need help with anything I am able to help with, ask me!  Don't be shy, I don't bite.  I enjoy respectable debate, as everyone is entitled to their opinions.  And I really hope we can SAVE THE DRAMA FOR YOUR MAMA and come together to spread awareness, support, and improve treatment options for us all.

--Claire
Sources:
1. The postural tachycardia syndrome (POTS): pathophysiology, diagnosis – management. Raj SR. Indian Pacing Electrophysiol J. 2006;6:84–99. [PMC free article] [PubMed]
2.  Postural Tachycardia Syndrome, Blair P. Grubb, MD, Clinician Update, Circulation. 2008; 117: 2814-2817 doi: 10.1161/​CIRCULATIONAHA.107.761643
3.  Postural tachycardia syndrome (POTS) Neurology. Low PA, Opfer-Gehrking TL, Textor SC, et al. 1995;45:S19–25. [PubMed]
4. Consensus statement on the definition of orthostatic hypotension, neurally mediated syncope and the postural tachycardia syndrome. Freeman R et al. , Auton Neurosci. 2011 Apr 26;161(1-2):46-8. Epub 2011 Mar 9.