For those who did not see the story, POTS was described as being directly related to small heart size resulting from de-conditioning, with exercise being touted as the 'cure'. Admittedly, the hosts did provide a short caveat following the story to say this may not be the case for all patients. However, the story itself was clear in its message and was given additional legitimacy by the use of repeated reference to NASA research. And again patients are left frustrated.
Despite overwhelming evidence that aetiology for POTS and other forms of Dysautonomia are many and varied, including but not limited to, autoimmune conditions, neuropathologies, connective tissue and mitochondrial disorders, POTS was presented as a uni-dimensional construct. Similarly, despite many patients extremely physically active prior to the development of POTS (including Olympic athletes and marathon runners) POTS was inaccurately portrayed as a condition created through de-conditioning and repaired or cured through reconditioning via a recumbent exercise regime. With the conclusion that resultant small heart size is the central problem. This again despite many patients continuing to demonstrate hearts with normal dimensions for age and sex, as confirmed by repeated heart ultrasounds even years after symptom development.
The by line underneath the video " NASA research helps treat women with fainting disorders" is also inaccurate as men are also affected by POTS, although the ratio of women to men (5:1) swings heavily towards women. Not to mention that not all POTS patients experience syncope.
Whilst, there are undoubtedly POTS patients who meet all of the criteria mentioned in the story, and are essentially 'cured' by such an exercise regime, they are but one small group amongst a diverse range of patients. To present one small segment of a patient population as representative of a whole disorder is not only inaccurate, it is highly damaging to those who do not meet this limited criteria
What is troubling about both this recent event and The New York Times article of last year (see my response last year on ABC Australia's RampUp), are that the purveyors of information are seen as well respected media outlets, thus lending legitimacy to information they provide. Whilst I as a patient have a vested interest in accurate information about my diagnosis, the average reader or viewer will take as gospel the snippet of information provided by these forms of media.
A quick scan of patient forums reveals that patients are already being left 'helpful' messages from friends and family that all they need to do is exercise and they will get better. Some are even having the legitimacy of their illness and continuing ill health challenged. A disastrous outcome by anyone's reckoning.
It has also come to light that the patient involved in the story has been poorly treated and misrepresented by the network. Her sister who accompanied her during the filming left the following comment on the ABC World News website:
"...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".
Such treatment by a patient who had the courage to share her story is frankly, appalling.
Whilst the increasing awareness of POTS and Dysautonomia in the media is a step forward, misinformation and oversimplification of a complex and poorly understood syndrome is not helpful. As patients we shouldn't be expected to simply 'be happy' with any publicity. We have a right to demand an accurate and non-damaging portrayal of our experiences.
Whether it be The New York Times or ABC World News, medical professionals need to understand the power they wield when portrayed as experts in their field, or when linked to prestigious scientific organisations such as NASA. It behoves them to choose their words wisely. With these media outlets, and prominent and respected journalists such as Diane Sawyer, involved in the presentation of this information, legitimacy is instantly imbued. These groups need to remember that whilst legally they may not have a duty of care to ensure that the information they provide on either Dysautonomia or any medical condition is accurate and does not harm those it is intended to help, they have a moral and ethical responsibility not only to the patients represented but the wider community to not provide misleading and damaging information.
One positive to come out of this most recent issue is the unification and mobilisation of the wider Dysautonomia community. Thankfully the use of the unprofessional and demeaning term Grinch Syndrome was avoided in the ABC report thanks to the concerted efforts of the Dysautonomia community, led by Claire Froust Martin of Stop POTS Virginia and Lauren Styles of POTSgrrl. See Irish Dysautonomia Awareness for a full round up of the issues of the last few days.
As many of the issues have not changed since I last wrote on this issue last year, here's the link to the article I had published Sticks and Stones: When the media perpetuate the myth, which covers a lot of the same topics.
To reiterate, POTS and Dysautonomia as a whole, is a complex and poorly understood disorder. Repeated and ongoing research has demonstrated that there are multiple aetiologies and mechanisms involved, all of which affect outcomes. Treatment needs to be tailored to the individual and are most often a combination of pharmaceuticals, lifestyle and dietary changes and graduated exercise programs. Some patients will essentially recover with time, some will continue to present with a relapsing-remitting profile, some with a chronic condition and some with a progressive path. It is not simply related to the heart. Thanks to the involvement of the Autonomic Nervous System, patients experience symptoms as varied as poor thermoregulatory control, delayed gastric emptying and even how their pupils react to light. The severity of the symptom presentation and the impact it has on the lives of sufferers and their families is varied. Many patients also present with a myriad of comorbid conditions which make treatment complex and difficult.
This is what the ABC World News story failed to convey and this is why patients will continue to make their voices heard.
PS. Yes yes I am having a blogging break, really I am. My youngest goes in for surgery on Monday so I'll start putting up the guest posts next week. :)