Big Data and No Health Without Mental Health - Reflections on Dr. Insel's blog

Big data and the consequent availability of health information about people in Sweden illustrates what could happen in our country -- and is happening, actually, in some areas such as Multiple Sclerosis and Autism -- if more information was available in real time.

Dr. Thomas Insel, director of the National Institutes of Mental Health, blogs frequently on a variety of subjects.  We are fortunate that he takes the time to do so to summarize the advances that have been made.  We are also fortunate that President Obama drew world-wide attention to the recently revealed NIH initiative to revolutionize our understanding of the human brain.

Although his title focuses on Schizophrenia, Dr. Insel closes this essay with the observation, "These new numbers from Sweden should remind us that serious mental illness is a health disparity issue. One way to think about losing 13 – 15 years of life expectancy is to realize that people with serious mental illness have not benefitted fully from the gains in longevity over the past half century. We frequently say “no health without mental health” to stress the importance of treating mental illness as a pathway to better health outcomes in society. For those with schizophrenia, even in the most advanced health care system in the world, we are still facing early mortality from lack of diagnosis and treatment of medical illnesses."

If all goes according to plan, I shortly will be speaking succinctly on what the lack of parity and the presence of myths  did to interfere with appropriate care for my beloved family member who has been battling an eating disorder for more than 25 years.  Thanks to the work of the NIMH, the Academy for Eating Disorders, the Eating Disorders Coalition, and F.E.A.S.T. among others, advances are being made to get information into the hands of those who can make a difference so that someone diagnosed with an eating disorder can get the best possible treatment quickly.

A big hurdle is persuading everyone to stay current.  Membership in these three organizations alone combined with following advances noted by NIMH, which includes reading, comprehending and utilizing the information provided, would make a huge difference.

The Four (or more?) Kingdoms of ED

Dr. Thomas Insel of the NIMH recently wrote this thoughtful piece about "The Four Kingdoms of Autism."

Over time I have become aware that there are similar kingdoms within the communities of Eating Disorders.  Within the last six months I've noticed programs for upcoming conferences the titles of presentations of which seem to be out of date and I question the insurance industry's insistence about paying for only a short period of in-patient treatment.  [I think each person is unique and should not be lumped into a category of x number of days of treatment for anorexia or bulimia etc.] 

I recall the NEDA conference I attended in New York in which the opening speaker, Dr. Russell Marx stated, ""The current advocacy efforts in the United States occur in an almost complete vacuum of data about the health services utilization of individuals who experience an eating disorder."

I'd love to see a similar thoughtful piece about the Kingdoms of Eating Disorders......

Updates and Thoughts re Eating Disorders that have become entrenched

Recently, I've posted three comments in other places that I've decided to draw together here.  This post will be somewhat disjointed as a result and I will probably return to edit it.  In the meantime, this also serves as an update of sorts and as another thank you to a woman -- Laura Collins -- who has made an enormous difference in the world of treatment for those with eating disorders.  It occurs to me, as with other social movements, that change comes from the bottom up. People like Laura Collins of F.E.A.S.T. and others connected with the organization she has founded (many, many parents and people currently on the -- at times -- tenuous road to recovery) are gaining a strong toe-hold and getting the attention of those who need to listen, many of them psychiatrists and therapists and treatment facilities who/which aren't keeping up with developments in the understanding of the brain and behavior and the influence of environment, and should be.

The recent news out of Great Britain of a teenager who recently died because she was released from a eating disorder treatment facility by people who decided that because she was an "adult" she could move on to take care of herself motivated me to return to post here.  Those people forgot that first, her brain was poorly nourished and therefore not functioning well, and that two, her prefrontal cortext -- the seat of where decision making is made -- was not (as with most teens is not) fully matured and probably would not be until her mid-twenties or because she had starved her brain, later than that.

An update of sorts is in order, because I have not posted here for quite some time.

First, for those with adult children with an ED that has become entrenched and who has a co-morbidity for example a diagnosis of borderline personality disorder and there seems to be no light at the end of the tunnel may I suggest that you

(1) never give up hope;

(2) believe that their true self is still in there, buried under the eating disorder's take over of their mind and it is, believe me, a take over;

(3) search for any means possible to force/persuade the person into treatment at a facility where your loved one will be safe for at least six months (twelve months would be better) - not only from herself or himself but also from all the many outside influences that may take him/her off track; 

[At this point of my list, I do suggest that you read Wasted by Marya Hornbacher. She was in such a treatment facility.  Continuing to help someone with a long-term eating disorder is absolutely critical. You are dealing with, I am sure you know, a deadly illness. 

(4) with an attorney if necessary, work with the medical/psychiatric staff at the facility to implement Sarah Ravin's excellent step program and be sure to follow the treatment. The first order of business is nutrition, nutrition, nutrition to bring your adult child's brain back to functioning order. Here is a link to what I am talking about:
http://www.blog.drsarahravin.com/eating-disorders/active-ingredients/
and then read this, too, also by Dr. Sarah Ravin:
http://www.blog.drsarahravin.com/eating-disorders/navigating-phase-ii/
This schedule is geared for someone whose ED is not as entrenched but it still highlights the time that is needed to overcome the ingrained behaviors.  
 
(5) Even if nothing else but restoration of weight and stabilization of electrolytes and of your adult child's brain occurs in that twelve months or so, your loved one will have been given an opportunity to heal in ways that seem invisible but that are critical for recovery. A nourished and somewhat stable brain is the first step.

(6) If at all possible eliminate all diet soda esp that with aspartame as recent research has indicated diet soda seems to exacerbate depression.

(7) If at all possible eliminate or cut way back on anything with caffeine so that the person's sleep patterns and sleep itself are not interrupted.

(8) Again, looking at Sarah Ravin's schedule, know and understand that recovery is fragile and tenuous every step of the way for those first six months or so. Remember that a set-back is not the end of the world. 

(9) A step-down facility may be (probably will be) necessary following this treatment in a locked facility.

(10) If you can, put together a team of people who "get" eating disorders and who "get" the person they are working with. An ideal team includes:
team leader who is herself/himself an experienced therapist
case manager
therapist for the co-morbidity
therapist for trauma work (if relevant)
nutritionist/registered dietician with ED education
occupational therapist
medical doctor
psychiatrist also trained in ED
http://desertdwellergettingon.blogspot.com/2010/11/team-approach-how-to-keep-recovery.html
 
An important component of this plan, as noted in the above link, is they all must have clearances to speak with each other and with the person (parent, spouse, etc.) who knows your son or daughter.

(11) if Borderline Personality Disorder was diagnosed (or emotional dysregulation disorder), get the very best therapist you can skilled in dialectical behavioral therapy who is at once kind but also hard as nails and who doesn't hesitate to seek their own therapist to help them because BPD is very difficult but not impossible to treat.

(12) remember that recovery is a long process rather than a one or two month treatment program.  Most therapists recognize that recovery can and probably will take 5-7 years.  

Progress...... one very small step at a time. 

Always remember the saying, progress not perfection. 

Also remember, eating disorders are brain disorders - an illness of the brain. If your loved one had tuberculosis (and the entire world is mobilizing for this disease probably because people suddenly realize it's becoming a real threat again, but just the same it is an illness) or cancer or MS or Parkinson's, real medical insurance companies would cover the treatment. There must be parity when it comes to eating disorders.  Contact your national and state legislators.  Demand parity.  NAMI and NEDA are very active in this work.   Our loved ones must be given a chance to heal just as someone with any physical disease must be given a chance. If treatment takes a long time or if it is chronic, then it must be covered and paid for.  It must be.

To close, I woke up this morning and remembered something one of my family member's therapists told me a few years ago having to do with ED treatment:

There was a time, in California, when there was a program connected with a major university, the organizers of which believed a year of treatment was necessary for someone to overcome an eating disorder (as a first step). The program was funded by a government grant, as I recall.

So little. So soon. Too soon for the rest of the psychiatric world to learn about and identify with before the program was discontinued, unfortunately. 

It's time to turn all of that around and return to the concept of long-term treatment, either in the home with paid leave covered by insurance to do this using formats such as that developed by therapist Dr. Sarah Ravin or in a formal treatment center that remains humanely connected with the family and that uses a very long term step-down program geared to the healing of the patient and not to some prescribed "everyone does it this way" kind of treatment.

I really do not know - I am not prescient - what the outcome will be for my family member but I do believe that it's important to share here what is being attempted on this person's behalf because little attention is being paid to those adults with entrenched ED's who could not benefit back then from what is known and is beginning to be practiced now.  

A link between diet soda and depression

The United States Department of Agriculture announced on Friday a proposal for "new standards to provide healthy food options in schools."

Note that this is a proposal and there is a call for the public's input, and a web address is provided in the news release.  So, the announcement does not necessarily mean a fait accomplit although the soft drink lobby is quite powerful.

Among the proposals is the availability of diet sodas for high school students and the choice of one diet soda each day for lunch.

At the same time, neuroscientists and presumably some members of the public are aware that an NIH study released in January reported a link between diet soda and depression!  Among the media reporting this was US News and World Report.

Earlier on my blog I wrote about the potential dangers of aspartame, an artificial sweetener found in many versions of diet soda.  I was surprised to find that the Mayo Clinic has actually addressed the question that I raised about phenylalanine.  

Here's a Mayo Clinic response to the question of phenylalanine,a substance found in diet soda.  Short answer - it can be harmful.

Today (March 14, 2013) another article that appears in the Huffington Post, this one by Dr.  Joseph Mercola titled Aspartame Pathway reports on the toxicity of another substance that appears when aspartame is broken down by the human body -  methanol.  From the article:  "Methanol acts as a Trojan horse: It's carried into susceptible tissues in your body, like your brain and bone marrow, where the alcohol dehydrogenase (ADH) enzyme converts it into formaldehyde, which wreaks havoc with sensitive proteins and DNA."

I hope more parents and the general public will become more aware of research that is uncovering links between aspartame and brain circuit disorders.  Perhaps in the meantime, if one wants a coca-cola, one might want to lobby their Costco or whatever to bring coca-cola that is bottled in Mexico (with cane sugar) to their locale.  Perhaps other soda manufacturers might want to return to real sugar, as well.

Yes, real sugar as well as sodas can be harmful, too, taken in excess.  In fact, studies have shown that some people became addicted to sugar when it first became widely available in our country in the 1800's.

Moderation is the key in all things.