Over the course of the past few weeks, a number of issues both large and small have arisen in the eating disorder industry bearing contemplation. So, let's sit on the front porch, light up a good cigar, open a single malt scotch and start solving problems.
There are a number of open and closed groups in social media such as Facebook which act as "peer-to-peer" support groups for parents or loved ones of those suffering from eating disorders. Recently, questions have been raised regarding whether owners or Admins of some of the sites are being at least partially funded by private entities involved in treating eating disorders.
So, the initial question is should Residential Treatment Centers ("RTC") or for that matter, any private enterprise, in any
way, distribute money to Admins of those groups and if so, should that be disclosed and does that necessarily
mean that the advice rendered in those groups is tainted? If the Admins were
the only ones giving advice or making recommendations, then yes a question of
objectivity would be raised. My experience though is that the VAST majority of
posts, advice, recommendations and opinions are rendered by actual parents in the peer support group. As such, is that advice tainted? No, of course not. We just want our loved ones to recover. And yet, statements about
non-care-givers or counselors or treatment personnel participating in those groups could be a cause for
concern... if those persons are repeatedly attempting to funnel people to their
own practice or facilities. Now those persons will undoubtedly “out” themselves by concerned parents when they are asked how they are involved and give veiled responses or if they keep giving the same recommendations for treatment at the same center. If not, they could be a valuable resource for assistance and advice. It is not an all or nothing issue.
On to other contemplations ... Recently, I read a statement that treatment centers are largely “for-profit” entities in
the US. That person's grasp of the painfully obvious is remarkable. Of course they are… as are
all of the private clinicians, counselors, nutritionists and doctors except those in academia or who work exclusively for non-profit entities. I think that is largely a red herring.
However, some people believe that RTCs by their very nature
of being for profit, engage in a cycle of "perpetuation of the disease." They get the patient just well enough
and happy with them so that when insurance “pulls the plug,” and the patient is
transitioned down, they will inevitably relapse and will want to return to the
place that made them feel the most comfortable… the RTC. So, the incentive is not necessarily to
pursue the best treatment available, but to get the patient just well enough to
perpetuate their bottom line. I
have spoken with some academicians who also believe this theory so this idea
is certainly not far fetched. Let's simply have the RTCs disclose the number of people who have returned to their center on more than one occasion. A mere number would not violate HIPPA and would add a valuable piece of evidence missing at this point.
Now,
do RTCs have a place in the recovery process? Yes, of course.
However, is it on the level that the industry currently places upon
them? Probably not. Always remember, it is NOT just the
doctor at the RTC who is making treatment decisions for our loved ones… it is
the medical person employed by the insurance company who is making decisions
based upon what the insurance policy requires and not what the APA guidelines state.
I have also heard much about "evidence based" treatment. First, what exactly is "evidence based." Yes, I know what the textbook definition is. But that is not sufficient. Any third year law student would be able to make a shambles of a dependency on "evidence based." I believe it is foolish to have a blind slavery to so-called, “evidence
based” treatments. Instead, we need to look closely at the underlying “evidence” and what evidence is actually being
considered. The “3 legged stool”
of “evidence based” treatments has been shown in many cases, to in actuality,
discount research evidence data. “Research indicates that, for the treatment of bulimia nervosa
and binge eating disorder, CBT and IPT have strong empirical support whereas
DBT and certain types of medications have modest support. FBT has been found to
be efficacious in children and adolescents with anorexia nervosa and bulimia
nervosa, for whom timely interventions are particularly crucial." (quoted from an article on Evidence Based Treatment.) In short, if a program is going to hold up "evidence-based" treatment as some type of gold standard, they had better be prepared to answer any and all questions about the underlying evidence... and not just parrot something that has been told to them.
In closing (and going back to support groups) at this
point in time, where we, as parents who are in the fight of our lives to save
the lives of our precious loved ones, find ourselves is being subjected to
bickering, in-fighting, accusatory finger pointing, ill-will and bruised egos
from Admins or Moderators in a number of closed groups across all social media
who would like to see nothing more than other groups fail because that would
prove they are “right” in their opinions on how to fight this disease. The power of the message is undermined
by the image of the messenger. More’s the pity I suppose. And trying to reel in those egos is like trying to round up a herd of cats in a room filled with rocking chairs.
Until the
medical industry gets serious about researching this disease and treating it as
a disease, we are doomed to continue to wander the desert. Until the biological and genetic causes
of this disease are more fully explored and understood, this disease will be
treated as an “unfortunate condition.” Until counselors and primary care
physicians start understanding and discussing the brain and oxytocin levels and
nitric oxide deficiencies and hormonal imbalances, we will continue to
flounder.
And all
the while, our loved ones will continue to perish and that Army of Warrior
Angels will continue to grow while we are left trying to put back together our
shattered lives.
The Power
of the Message. The Power of the Message.
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