Tuesday, March 6, 2012

The ABC News Aftermath; Junk Reporting and THE GRINCH Making Life Harder for POTS Patients


As many of you in the Dysautonomia community know, ABC recently aired a segment on World News Tonight with Diane Sawyer about POTS (on 2/29/12).  Leading up to that broadcast, a series of events took place that amazed me and reinvigorated my faith in the power of patients as a community.  We mobilized.  We complained. We used every connection we could.  And it worked - sort of.

Here is a breakdown of the history of, and problem with "The Grinch Syndrome", along with a timeline of what took place over the last week.  I also include a call to action (once again) from our amazing POTS warriors to force change that is long overdue.  




THE GRINCH PROBLEM



There is a researcher out of Texas named Dr. Levine who proposed that POTS be renamed The Grinch Syndrome.  He did this based on his study that was published in the Journal of American College of Cardiology in 2010 called Cardiac Origins Of The Postural Orthostatic Tachycardia Syndrome. The presumptuous name of the study is the first clue as to how preposterous this "study" and its "conclusions" are.  Levine and his researchers claim 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 non-drug therapy for POTS patients."




So he claims that a small heart size due to deconditioning is causing POTS.  He bases this claim on a study comprised of 18 POTS patients, 13 of which had small hearts, who were compared to 16 healthy control patients.  He chose those 18 patients based on a "mysterious" (insert sarcasm here) new method of studying POTS patients , which are a mixed bunch, being that POTS is a syndrome known to have numerous causes.

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 POTSPOTS Grrl actually emailed Dr. Levine, and he was kind enough to respond, to ask what he meant by that statement since we could not find it in the paper he cited.

He responded by noting the following:

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." 




So (in plain English), he excluded the vast majority of POTS patients, and based on his small study size, of which ONLY 13 had small hearts, he proposes to rename the entire POTS population.  And not just to rename them us, but to give POTS a name that is negative, degrading, and actually a false representation of the majority of POTS patients.  He excluded anyone with known hypovolemia (low blood volume).  That is a TON of us, no matter the underlying cause.  Endocrine abnormalities excludes the entire Hyperadrenic POTS  (also know as Hyperadrenergic or Hyper POTS) population.  About half of POTS patients are known to have some autonomic neuropathy involvement (see the Neurology Supplement from 1995, written by Dr. Low who first defined POTS, and the Autonomic Neuroscience Consensus Statement from 2011)


Thus, if you design a study to exclude significantly more than half of the known patient population by excluding those with autonomic neuropathy, hypovolemia, and Hyperadrenergic states - your study is not representative of the entire patient population.  

Levine's actual study methods were fine and met general scientific standards for conducting a study to be published in a peer reviewed journal of esteem.  We all agree that exercise is a good and viable treatment option for POTS patients.  His study was fine for the purposes of identifying the underlying cause(s) of POTS in this specific subset of patients with small hearts, as eliminating patients with known causes of POTS from the study will help focus the research on those with causes that have not been identified yet.  However, you cannot credibly draw conclusions about the cause of an illness for the entire patient population from a study population that does not include at least half of the known patient population. 


How was a study with such obvious flaws in its conclusions published in such a highly regarded medical journal?   Why have no leading researchers in the POTS and Dysautonomia world spoken out?   Your guess is as good as mine.  But our fundraising, insurance, and hard earned dollars go to these doctors, and it is time they do the right thing.  Maybe they thought this whole Grinch thing would just go away - but it has not - and the events of this past week are a direct result of this controversial, ridiculous, and unscientific study's conclusion that POTS is caused by a small "Grinchy" heart.  And on top of the ABC news situation, they are still touting the Grinch term at conferences, as is evidenced in this write up of a luncheon last month where Dr. Fu (of Levine's team) actually used the Grinch term not just in regards to POTS, but to all women!  See Expert: Women at cardiac disadvantage, and you'll see in that Dr. Fu apparently thinks "the reference to a Grinch’s heart was comparing the heart size and blood volume of women to men." so women are Grinche's because our hearts and blood volume are small when compared to men.  WHAT???   So now I'm offended on two fronts; as a POTSy - and as a woman.  And for the record - my heart is completely normally sized and works perfectly, at least when I'm laying down, as evidenced by over a dozen ECC's over the last decade.  


JUST TODAY (3/5/12) a new article was released by About.com (finally!) with Dr. Richard Fogoros speaking out against the Grinch terminology.  Here's a link to his article, and please read it and let him know how much we appreciate it by commenting!

POTS - Who's The Real Grinch?

By , About.com Guide   March 5, 2012





THE ABC PROBLEM

Here is a portion of our posted call to action (by myself and POTS Grrl), which sums up what happened with ABC: 

ACTION ALERT-Tell ABC NEWS Not to Disrespect POTS Patients
 
Last night (2/28/12) ABC World News with Diane Sawyer did a segment on Cardiogenic Syncope. They showed a preview clip of tonight's segment with fainting astronauts, and we know that is going to be about POTS(Postural Orthostatic Tachycardia Syndrome).  Fellow POTSy(POTSGrrl) called ABC News tonight and spoke with the reporter who prepared the POTS/astronaut story.  Claire from STOP POTS called as well, and spoke with the reporters assistant.

After she told her she had POTS, she said something like "you mean Grinch?"  This means that ABC may be doing a story on POTS tomorrow night and calling it the dreaded Grinch Syndrome- a degrading and negative term invented by one doctor who did a deeply flawed study on a mere 18 POTS patients, and decided that all POTS (in the million+ person POTS population) was caused by deconditioning, and that all POTS patients have small hearts like the Grinch.  It is disrespectful, disgusting, and more importantly, WRONG.  Credible POTS researchers have known for years, and have published numerous studies, noting that POTS is caused by many different ailments; neuropathies, autoimmune diseases, EDS, viral infections, MCAD, pregnancy, head/neck traumas, Chiari malformations, post-viral onsets, pregnancy, etc.  Moreover, as most POTS patients have had detailed cardiac imaging, we know that most POTS patients do not have small hearts. 


We have been planning and mobilizing to campaign against the use of this negative and inaccurate term on a nationally broadcast network show.  We are reaching out to all the major Dysautonomia related organizations, and I have sent a lengthy email directly to the producers of the show through various family media contacts.   But we still need your help!....
........See the continuation and full text here.

So we posted this on our blogs, sent out emails to other bloggers, and I posted it on every Facebook site I could find and asked others to re-post.  I started tweeting.  You started tweeting,  You started posting.  And you (and I) complained to ABC!  The response and mobilization of the POTSies, family, and friends was immediate - and amazing.   The email mentioned above was sent out by a family member of mine, who has media contacts all over the world.  It worked it's way to the producers of the show, and we were told they contacted Mayo, Cleveland Clinic, and Vanderbilt for information.  This all took place on the day of the broadcast.    

In my opinion, and only my opinion, based on what I know of how media works - the segment was ready to go and completely based on the small Grinch heart cause of POTS.  I think our (our being the entire POTS community that mobilized) efforts were the reason they did not use the specific term, but they still conveyed the idea that POTS is caused by a small heart.  They did end the segment with a short blurb saying that POTS has other causes.  But within the originally aired program, they used the word CURE, the word EXERCISE, and talked about SMALL HEARTS.  They featured dramatically fainting astronauts, and a lady on an exercise bike. They may have been trying to tie into the NASA theme, but unfortunately what was conveyed to many was that POTS is caused by deconditioning and small hearts (aka The Grinch Syndrome), and we can all just hop on our exercise bikes like the lady in the segment and we'll be cured.   

My miracle munchkin!
The reality is that POTS and Dysautonomia patients already face an uphill battle.  Our illness is hard to understand, hard to explain, and most doctors and the public don't even know it exists.  We get dismissed as having anxiety, or being lazy, or being hypochondriacs - until we get to the right doctors and are validated with a diagnosis.  Getting to those doctors sometimes takes years.  For me, it has taken almost a decade.  I have had a wonderful Internist that read up on POTS and has been trying to find me the right local doctors (with no luck) for years.  I have seen countless local specialists who know nothing about POTS, and was hospitalized for 9 months last year during a pregnancy that caused my POTS to go bonkers.  I believe the care I received made my condition worse - because the medical professionals didn't know anything (and I guess were too busy to find out) how to care for someone in my medical situation.   I almost died because of that, and almost lost my baby as well.   I am left home bound and very often bed ridden due to the 9 months of forced bed rest, when if they had just listened to me when I told them I couldn't breath, and it was not "just my POTS," it was actually over a dozen Pulmonary Embolisms, we may have avoided some of these issues.  If they had listened to me about getting up and moving (like my wonderful Physical Therapist at John Hopkins did for the 3 weeks I was with her) and read up a bit about bed rest being the worst possible thing for POTS, I may be in much better shape and not passing out after being upright for 90 seconds.   My point is that I, and many others, go through enough having dysautonomia - it is a daily physical, mental, and emotional battle - and the thought of my syndrome being renamed after the Grinch is terrifying and infuriating.   



THE FALLOUT
So as a result of the "Grinchy" heart story playing out on ABC, even without using that term, damage was done.  I am fortunate that I have wonderful and supportive people in my life that have read up on what I have and grasp at how hard even simple tasks are for me.  Or they try.  But not everyone else does.  So the fallout from this report was immediate.  I started hearing from people about responses from family and friends telling them they just needed to exercise and they would be cured!  Or that they must be lazy to have had POTS for so long and not be cured yet.  Or even well meaning people worried about their small hearts, and did they have a recumbent bike yet?   Here are some exact quotes from Facebook boards, groups, the comments section on ABC, and via email:

"Get a load of this...just found it posted on my wall. whew boy....."Hi ----name deleted----- ABC news tonite reported that nasa has come out with an important study on POTs syndrome including things that can be done to strenghten or enlarge the heart muscle...love you"

"It is hard enough to get doctors that don’t know anything about this condition take you serious but to add media that misinterpret this condition makes it hard for any of us to be taken serious. One of my own family members called after this was aired and told me they can’t me serious anymore and can’t believe I would lie about my condition and that I need to get off my couch and get exercising so I can take care of my family properly. I wish it were that simple but it is not and now I look like a liar to my family and friends. Please make sure if you are going to mention a condition you get the information correct because you know who is going to be effected by your interview/articles."

"I know just about everyone is posting about this but I must say I'm somewhat pissed and discouraged about ABC's story tonight. Yes pots is getting media coverage but the wrong type of information is being given. This is why most doctors think the way that they do about pots. This is why my neuro takes pots as joke. After watching this my boyfriend looks at me and says "See, what have I been telling you about exercise" :-/ " 

"I'm not going to play the show for my husband for just that reason - he'll say "See, I keep telling you that the one thing you don't make the kids do is exercise regularly". I don't want to hear it -- I can only make them do so much!"

"Just got a call from my grandmother saying she didn't know I had a small heart and wondering why she never heard of this before today... She also wants to know why I sent her all that information a few months ago if it wasn't true. That was so upsetting to think my grandmother thinks I am lying to her and I just made everything up. She told me she will still love me but will not take me serious anymore and I better getting exercising like the doctor said so I can take care of my children again and stop being my mother. I can't believe that really just happened." 

And so on, and so on.  The worst was a post by the sister of the woman featured on the segment:

"My name is Leigh Ann Poole. My sister, Kathy Chandler, and I were at the Cleveland clinic for a week of additional cardiac and neurological tests when she was asked to share her story about POTS. This has been a very debilitating condition for her and many other people; and so she agreed to share her story and even repeat tests that were difficult and painful for her – for the camera – so people could learn and understand more about this very life alternating diagnosis. In fact this taping took about 6 hours to film and required her to be stuck 3 additional times for an IV. I accompanied her, often pushing her in a wheelchair, and watched all of the videoing for this story. So what happened? ABC used a few seconds of her story, took it highly out of context, and made her out to be really without disability and even pronounced her “cured” – even when they knew that she hadn’t even received her test results back to determine the cause of her POTS (and there are MANY). Further – she has submitted several responses to this blog that have not been published (even though posts before and after her submission were posted). She has friends and family now thinking her “prescription is simple” and all she has to do is exercise – oh and of course since ABC has declared her “cured” that she can now go back to her everyday life. People are even posting on this site that she doesn’t even have moderate POTS because ABC has made her disabling condition of extremely high heart rate (160) and extremely low blood pressure, extreme fatigue, blurred vision, etc out to be that she is just a “chronic fainter” who is now cured. Very disappointing and an outright total mischaracterization of the facts. I decided to try to post to see if in fact ABC will post my comments since they apparently will not even let her defend herself from these lies on a blog.
- Eye Witness
I would also like to add that we could not be more happy with the very thorough care Kathy received from her GREAT doctor – Dr. Jaeger – and the Cleveland Clinic. They truly are wonderful and hopefully will be able to help her.” (
http://abcnews.go.com/blogs/health/2012/02/29/what-astronauts-have-taught-doctors-about-fainting/#comment-1050902)"



THIS STORY  HAS BEEN DAMAGING TO MANY, AND ABC NEEDS TO DO THE RIGHT THING AND CORRECT THEIR BAD REPORTING.



OUR RESPONSE

We have called upon a few of the medical professionals in the POTS community to join with us in formal protest of this ridiculous report.  The letter below is being sent out today, and you have permission to copy and paste it wherever you want and send it to everyone you know, and any contact you can find at ABC or any other news outlet:

 

Dear ABC World News,

As POTS patients, we want to express how disturbed we are about the misleading information presented on ABC World News Tonight on 2/29/12 regarding POTS (Postural Orthostatic Tachycardia Syndrome). There were numerous inaccuracies and many in the patient population are very frustrated, because by portraying POTS as having a "cure" and being treated primarily through exercise, the daily struggles we face have been overlooked and candy-coated. We appreciate you not using the inaccurate and offensive term “Grinch Syndrome,” but what you may not realize is that the unproven theory you provided about exercise being a "cure" and POTS being caused by small hearts comes from the same doctor who is promoting the ridiculous Grinch terminology.

A more accurate segment on POTS would have noted the following:
- POTS is not a heart condition, it is an autonomic nervous system condition.
- There is no credible evidence that POTS is caused by small hearts.
- The vast majority of POTS patients have a heart of normal structure and size.
- Most POTS patients are active young women and active teenagers who were not deconditioned when their POTS symptoms began.
- Exercise is not a cure for POTS, it is part of an overall treatment plan; unfortunately, there is no known cure for POTS at this time.
- POTS can be caused by many things, including but not limited to: genetic abnormalities, autoimmune diseases, infectious diseases, and collagen vascular disorders - none of which can be cured with exercise.
- According to Mayo Clinic, approximately half of POTS patients have some form of autonomic neuropathy. Unfortunately, autonomic neuropathy cannot be cured by exercise either.
- Researchers compare the quality of life of POTS patients to those suffering from COPD and congestive heart failure.

Your segment will have far reaching impacts on how POTS is viewed by our family, friends, co-workers, Social Security decision makers, employers, and even our doctors. POTS impacts over 1 millions patients in the U.S., yet it is just recently being recognized by the medical community. We are grateful that you have chosen to highlight this often misunderstood condition, but any misinformation is detrimental to our efforts to accurately educate the public and medical professionals about POTS.

After your broadcast, we received calls and e-mails from numerous patients in tears. One young woman's parents yelled at her and told her she was lazy and just needed to exercise to "cure" herself. A teenage POTS patient has been chastised on Facebook by her peers for being sick, when all she has to do is exercise. A woman's husband is blaming her for being sick and unable to care for her children, because now her husband thinks POTS is her fault for not exercising enough. We want you to understand the gravity of the effect of your words, on real people. While we are sure you did not intend your words to have this effect, as a nationally respected media outlet, you have a responsibility to report accurately - particularly when it impacts someone's health.

In the coming days, we would appreciate a clarification or "update" during your broadcast and a supplement to the text article appearing on the ABC News website. We genuinely hope you understand how important it is that you clarify to the public that POTS is not curable at this time, that it is only treatable, and that exercise is of only one of the many ways we try to manage the daily symptoms of this very disabling illness.

If you would like to reach any of us or of you would like additional information about POTS, you can contact Claire Martin of STOP POTS at stoppotsvirginia@gmail.com.

Respectfully,

Claire Foust-Martin, Founder: STOP POTS Virginia - Virginia Beach, Virginia
Lauren E. Stiles, Esq., Founder: POTS Grrl - East Moriches, New York
Christiane Racette-White, RN, Trustee: POTS UK - Worcestershire, United Kingdom
Dr. Guy Labelle - Sturgeon Falls, Ontario, Canada
Dr. Amy C. Marshall, MB ChB DFSRH - Cheshire, United Kingdom
Harold Lenett, MD - Milwaukee, Wisconsin
Stacy L. Reed, RN, RRT - Madera, California
Jennifer Samghabadi, MSN, RN, FNP-C - Port Jefferson, New York
Nicole Tomaschik, Occupational Therapist, C/NDT - Wallingford, Connecticut
Judi Lenett, RN, BSN - Milwaukee, Wisconsin
Jeff Ervin, LPN - Cincinnati, Ohio
Angela Yendes, RN - Oceanside, California
Gena A. Hart, RN - Alston, Georgia
Priscilla Haynsworth Avery, CCT - Orange, Massachusetts
Heather Berg, RN - Omaha, Nebraska
Amy C. Clevlen, RRT - St. Louis, Missouri
Katie Heckman, RN - La Jolla, California
Teresa Dingle, RRT, RCP – Myrtle Beach, South Carolina
Shannon Farrell, RN - Detroit, Michigan
Susan K. Lyons, RN, BSN - Glenford, Ohio

cc: Ms. Andrea Canning, Corespondent, ABC News
Mr. Michael Corn, Senior Producer, ABC World News




CALL TO ARMS


Yes, it's dramatic sounding.  But that is what I think needs to happen.  We need to get the word out.  We need to use every resource we can, and all get on the same team to properly educate people about this disabling illness.   We do not need to be invisible.  POTS is not rare, we are a million plus person force to be reckoned with, even if we have to do our reckoning laying down.







---Claire
(With contributions from POTS Grrl)

Also
Rusty Hoe from Living With Bob wrote an excellent post about this same thing!  Here it is:

Media misrepresentations of Dysautonomia Part II: ABC World News

 

And if you haven't already, please check out:

POTS - Who's The Real Grinch?

By , About.com Guide   March 5, 2012

5 comments:

  1. Couldn't agree more! Thank you for being so articulate and energized about it, too. The Dr Fu comment reminded me of similar 19th century arguments about female intelligence: i.e. women are less clever because they have smaller brains!

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  2. Thank you for putting this all together! I've had "well-meaning" relatives sending me this article all week to let me know that a little exercise will perk me up... even though I've told them all my disease is neurologically based. Thanks for compiling this information and helping us all get our side of the story out.

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  3. Great letter, post and information. I'm not one bit surprised to hear ABC is blocking negative posts on their story. I used to be a member of dinet, but they also have been blocking my negative posts on levine. Doctors like this put plants into forums and push their agenda. Keep speading the word and pushing the truth out about dysautonomia.

    toddm1960

    ReplyDelete
  4. Todd,

    You should come back, because plenty of us are talking up and out about how we feel. We need your input on DINET.

    Claire,

    As difficult as it is for us to deal with every day life - we need support and correct representation. I appreciate your efforts in that regard.

    Issie

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  5. I just came across this post, I know it was from a while back. I just wanted to comment because I was extremely debilitated and completely bedridden from POTS for years. I successfully completed Dr.Levine's exercise protocol and it SAVED my life. Knowing Dr.Levine personally the term "The Grinch" was never intended to be hurtful to anyone suffering from POTS. He has worked with so many POTS patients and has an extreme respect for each patient and does everything in his power to help us feel better. It made me really sad when I saw this post because I would hate to think that it caused anyone to not look into this chance at getting their life back and have the opportunity to start feeling better. I just started posted on a blog, I am no where near the impressive amount of content you have on yours but if you want to check it out or contact me, that would be wonderful. http://mollypotsrecovery.blogspot.com

    Here is a link to the response Dr. Levine had to the post "POTS--Who's the real Grinch" http://heartdisease.about.com/b/2012/03/08/the-pots-controversy-continued-dr-levine-responds.htm



    Take Care and Be Well!

    ReplyDelete