Friday, July 20, 2012

The conversation no one wants to have.....

Recently, I read the article attached below. It really hit home. I hesitated for a moment wondering if I should bring up such a painful subject?  Then as a I began to ponder my own experience with this tragic situation, deep feelings of sadness and frustration came bubbling to the surface. I knew I must write about this. This topic is one that is brushed under the rug or whispered about and may make some uncomfortable; for that I am truly sorry.

Suicide has been published to be one of the top three causes of death in those with ME/CFS. The other two are heart disease and cancer.  It is well known that individuals with chronic diseases, such as MS or lupus, die at younger ages than the general population and it has been reported to be no different for those with ME/CFS.  On top of that, too many of those who suffer with this disease, are not only without effective medical care but they are also without validation of their illness or psychological support.  Left without the hope of their lives improving, some take their own lives to end the unrelenting pain and suffering.  Family members, who watch helplessly as their loved ones suffer without end, still grieve for them at the time of their death.  Those who are gone leave behind confused and grief stricken parents,siblings,friends and often times children.

Anyone who has ever lost a loved one to suicide knows the extraordinary pain it causes.  The pain of losing someone you love is compounded by the fact that they took their own life. The awful feeling of guilt is added to the already painful grieving process. 

Many people working in this field have been hesitant to discuss the subject of suicide for fear that ME/CFS will be characterized as a mental illness.  It has already been proven that ME/CFS is not a mental illness, but rather a very real physical disease.  Yet, when life becomes hopeless, some individuals may decide to give up.  As a result doctors often question whether they could have done more, while other ME patients may identify with those who are gone and feel the loss in a profoundly personal way. 

Despite these possible outcomes, I believe that the very real subject of suicide should be openly and honestly shared with the public in order to help those who are at risk.  Knowing that individuals who suffer from ME/CFS, may be more likely to take their own lives when they are dismissed, should help doctors and other family members, realize the responsibility they have to take these individuals and their illness seriously.  Physicians also have a responsibility to help family members understand the severity of the illness and the hardships patients face when they are medically ignored and/or forgotten by friends and family.   For far too many, this disease causes tremendous physical suffering.  It is cruel and inhumane to add more pain by blaming them for their illness.  

The mischaracterization of this illness as simply fatigue, with the resulting medical disbelief and neglect of those who are ill, has to stop.  It is time to tell the world the truth about ME/CFS.  This disease is real, it is serious and it can have devastating consequences. But that statement does not go far enough.  We must find effective treatments. 

Only when we face those truths and educate the public, will others finally understand why we must dedicate much greater levels of funding for research to find significant answers.  Millions who suffer from this debilitating disease are counting on us to help.

For those of you who may be struggling with these serious feelings there is hope. Please consider reaching out to a trusted friend, your physician, or a loved one and let them know you are in need of their support.

It is also important to know that those of us at the WPI have not and will not give up this search for answers.

ME Drove My Daughter to Suicide

Friday, January 27, 2012

Looking Towards the Future!

The Whittemore Peterson Institute was excited to bring this blog to life in 2011, and we look forward to providing exciting news in 2012.  Watch for upcoming blogs about WPI and neuro-immune disease.

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Your Friends at WPI!