As an advocate mostly through my blog but also through other activities
including sharing experience, strength and hope on two websites, my trip to my State Capital to provide legislators with my
and my family member's abbreviated story after presenting the same 20-minute story to a group of local therapists, as well as low-keyed (well, maybe some don't think it is/was so low-keyed) coaching of key members of my family member's team, I was curious to hear Laura Collins
Lyster-Mensh's presentation as well as Colleen Wise's the following
day.
Laura is the Founder and Policy Director of F.E.A.S.T. and much,
much more as can be learned if you read her bio. I find it difficult to address her as Lyster-Mensh or even Collins (the name she used for years) because she has become my and many people's amazing hero and citizen scientist and I am startled at times to realize that I, like many others, are on a first-name basis with this incredible woman.
Her talk was titled, "
An Advocate's Vision for a Complete Spectrum of Care," and her vision, I believe, is not just for those who are ravaged by eating disorders (and here I am talking about all of the people affected when a family member develops one) but anyone who needs health care.
Rather than to report the details of her multi-faceted vision, which will be available at the F.E.A.S.T. site, I found it ironic to recognize and reflect, as I listened to Laura's presentation, that my family member's care has been anything but a continuum. Rather, it has been a patchwork of a dysfunctional mental health system; of laws well-intentioned but at times interfering and discriminatory; protocols that have been standard or above average to substandard or not standard at all that vary from institution to institution; of communication -- partial or even miscommunication between and among caregivers that has at best prolonged her illness to actually has endangered her life; of at times a piecemeal approach to diagnoses and treatment independent of comprehensive records; and of people/organizations who ranged from incredibly devoted to bringing a person into recovery to interested in treating only one aspect of the illness to a few who were downright sadistic and uncaring.
We have met and been helped by individuals and institutions who/that have bent over backwards in an attempt to identify possible effective courses of action, who have offered reduced cost of treatment given our extended family's increasing burgeoning expense, who served pro bono in a variety of capacities, who have stretched their institution's capacity to work with our family member, who have answered a telephone call from an absolute stranger (Kitty Westin did this for me several years ago after I was given her private number by a friend in a medical setting who observed the dire circumstances my family member was in), and who have listened when I have presented information that could not possibly be comprehended in a weekly one hour session. And, so much more.
There have been several times over these many years if you'd asked me if I thought my family member would be alive in one, two, seven and now twelve years in this second go-around, I would have retained hope of the possibility but uncertainty that her body and mind could survive what has happened to her. I know that others have experienced equally challenging situations and others have lost the fight. In fact, at the beginning of her relapse, a friend and therapist told me more than ten years ago to "hope for the best and prepare for the worst."
Yet on the plus side, as I expressed in Part 1, advances have been made in the knowledge and treatment of eating disorders that have made survival and even a productive life more of a possibility for the boys and girls, and young men and women who have been undermined by eating disorders. Much needs to be done. It seems the bottom line is the absolute necessity of getting information from doctors, clinicians, psychiatrists, scientists and other researchers to those who actually are diagnosing and treating individuals far faster than happens now (at the 2010 NEDA Conference I heard the remark that it can take twenty years for research to reach those who practice; this marker has certainly been reduced thanks to the internet, devoted scientists, and determined advocates) combined with the requirement that all in this field -- in fact in any aspect of the mental health field -- be recertified to demonstrate that they are current with findings and implement them for those in their care.
Dr. Thomas Insel, Director of the National Institutes of Mental Health, suggested a recertification requirement in his presentation to those attending the F.E.A.S.T. 2011 conference. By the way, he also
keeps a blog and recently revealed that his daughter struggled with an eating disorder. You can find more about him
here. Also, here (
NYT article). He's been a wonderful advocate to many.
I will close this personal response to Laura's concept of the
ideal Complete Spectrum of Care by describing (since the image disappeared) five concentric circles, the innermost one being the patient .... or actually in an ideal situation I would call them human cells, as it were, with permeable membranes so that information flows freely between and among all components, the components (from outer to inner) being the law, the community, the professionals, the family, and the patient.
So, how does a person determine whether or not the information that appears in research documents, published papers, reports at conferences, the media and so on is valid? Why treatment at one facility might correctly be characterized as more effective than at another? What conditions must be met to assure us that the data are correct so we know, for example, that x protocol is better than y, or that Family-Based Therapy is effective?
To better understand these and other questions, I looked forward to attending Siobhan McGurk's presentation, augmented by informational slides including this checklist
 |
| (Siobhan McGurk, 2014, used with permission.) |
of what to look for when reading a paper as well as a hilarious example (you'll need to view the video to get the full effect of the laughter that followed) of how an unsuspecting individual could reach a preposterous conclusion about the cause of Global Warming. I think the expression is, "correlation does not equal causation." If anyone was asleep at the beginning of her talk, certainly that slide and the laughter woke them up.
McGurk's talk, "
It's Elementary: Decoding the Evidence in Evidence-Based Medicine, a How To Guide" was designed to show us how to read and make sense of the literature. She walked us through definitions, illustrations, examples of abstracts as well as papers, and explained contents, language and symbols used such as
p value. She explained levels of evidence; the differences between types of studies (for example cohort studies) and clinical trials including what she termed the gold standard, which is a
randomized control trial and why the RCT
is the gold standard. I encourage readers to access her talk when it appears on the F.E.A.S.T. website. The information in her presentation will certainly help me to distinguish between results of works in progress as well as anecdotal evidence and valid conclusions that can be implemented to make a difference in treatment and outcome.
A helpful but nowhere near as detailed as McGurk's presentation is this one published by the University of Minnesota - "
Understanding Research Study Designs."
I was also surprised and pleased to learn that all medical studies published in this country must be submitted to the
United States National Library of Medicine so they can be accessed and read. The NIH maintains this website. What a resource and certainly worth a visit.
The Wikipedia description provides extensive information about the purpose of the Library.
Although I did not list this presentation in my initial piece about the conference, I recommend
Dr. Kerri Boutelle's overview of Family-Based Medicine, that followed. Incorporated in FBT is the principle that there are three phases of recovery. I regularly read
Dr. Sarah Ravin's blog and I referred
this outline to my family member's treatment team. Dr. Ravin discussed Phase II
here and, in fact, there's a link to Phase III, as well. Again Dr. Boutelle's presentation was taped and will be available on the F.E.A.S.T. website. I do want to note there was considerable discussion around the re-feeding topic and the "how" and "what" of it. Several participants of the conference pointed out that one of the most "popular" discussions on the Around the Dinner Table site is what, how much, and how to refeed.
I've been a frequent visitor to and reader of
Dr. Julie O'Toole's
blog. She is the Founder and Medical Director of the Kartini Clinic in Portland, Oregon. Her talk,
"Towards a Definition of State not Weight" provided us with additional information she believes is valuable to understand where a young person is on the road to recovery.
As I've found, often insurance companies evaluate a candidate for treatment (and therefore financial support) based on their weight and/or BMI. As I've also observed over the years and read in published research papers, not much can be accomplished during therapy sessions without weight restoration so weight has become a key indicator not only for progress on the road to recovery but also payment for and release from the care of a residential facility. However, what I've also observed, just because weight has been restored
does not necessarily mean that the person is recovered or perhaps better worded, in recovery.
Dr. O'Toole believes and is collecting evidence that markers for State are also important and their clinic uses blood tests to determine how the child's or adolescent's biology is doing. I extracted the following paragraph from her blog of November 27, 2013 titled "Eating for Life" to explain accurately what the Clinic does and why.
We currently do metabolic testing on all children on admission to our
program as part of our effort to understand and work with their
individual biology. Typically, in the case of AN and disorders
involving weight loss, we see low levels of leptin, low thyroid hormones
(TSH, T3, T4), very low female and male sex hormones (LH, FSH,
estradiol, testosterone), low zinc levels, low nutritional markers (C3
and total T3) -- all at levels consistent with starvation. And
typically, as we track them through weight restoration, these levels
come up to normal and the child -- if a girl -- either initiates or
resumes menstruation. Boys get their testosterone back and with it their
energy. That is, some boys and some girls. Others
however, depending no doubt on their genetics, go off the rails in a
couple of ways. Some develop insulin resistance and post-prandial hypoglycemia,
others develop apparent leptin resistance. Some have stubbornly low
leptin levels that act as a “stop!” signal for return of female hormones
(no LH surge, low estradiol).
As Dr. O'Toole continues to make a case for the necessity of these markers, perhaps doctors and medical personnel involved in the treatment of those with anorexia and other eating disorders will also include these tests and eventually a study can be conducted to evaluate the necessity of adding these and perhaps other markers to the list of what could be considered a medical description of a return to a nourished state.
My aside scribble in my notes is a suggestion that an endocrinologist be added to the team of an individual receiving FBT or to the team of an adult receiving outpatient therapy as well as to the staff of facilities that treat eating disorders.
After another wonderful lunch, this time of salmon, we returned to hear
Colleen Wise, a Parent Advocate, discuss "How to advocate/educate while telling your story." As an aside, I've struggled in the past with what to include in any presentation I make as an advocate about the effect of an eating disorder not only on our family member but also on our extended family. I've considered that my family member's story is really her story, not mine. Yet none of us in the family can truly extricate ourselves from the effects of the eating disorder on a person who we all have known since birth, who we love dearly, and about whom we have wonderful and funny as well as now in fact terrifying and sad memories.
So often we must advocate for another stay in a hospital or in a residential facility or in a facility that offers outpatient care. I remember responding to a friend that the cost for residential averaged (this was several years ago) $1,000-2000 a day!! and watching her jaw sag in disbelief.
Thanks to organizations like
The Eating Disorders Coalition in Washington, DC, there are now organized opportunities to advocate for our loved ones before members of Congress as well as at the State level thanks to the National Eating Disorders Star Program that brought me to Phoenix.
There are opportunities for us to speak out when we see an advertisement in the media or hear someone convey misinformation or repeat tired phrases that insinuate blame on the family.
Colleen presented a humorous and also very emotional account of her family's story accompanied by photos. In Part 1, I concluded with some thoughts on the heartbreak that can occur in families when the eating disorder interferes with the relationship between mother and daughter or mother and son. This is not uncommon; I've heard this far too many times and from families that were loving and intact until the disorder made its appearance.
Some of Colleen's points included the very important notion of removing anger out of your presentation, to be succinct, take brochures and other informational material (like the F.E.A.S.T. publications), try to find common ground and common goals, and present relevant facts. I particularly appreciated her suggestions on how to phrase the introduction of information that hopefully would change, for example, a doctor's approach when working with your family member. I loved her comment that you don't have to be an expert. I know I can become cowed by authority and fail to make simple informational points that could change the point of view of the leader of a treatment team. Watching Colleen's presentation and hearing her suggestions was very empowering and very helpful. I encourage readers to watch her talk when it's uploaded to the F.E.A.S.T. website.
In closing, I again want to thank the conference organizers and presenters, the parents and those in recovery who attended and whose comments enriched our experience, the representatives of treatment facilities who attended, as well as the ever-present moderators on the
F.E.A.S.T. Around the Dinner Table website/forum.
