Tag Archives: advocate

Llewellyn King Is Passionate In His Advocacy for ME

Llwellyn King offers his take on how sufferers of ME cannot enjoy this holiday season as others can, who are not afflicted.  Those suffering with ME are forced to bear the loneliness that the isolation of being ill with this chronic illness brings.  Socializing is drastically reduced.

He speaks of the necessity of focusing on the love that the family members, lovers and dear friends give to the chronically ill, especially ME patients.  Llewellyn is passionate as he reveals why he and others have taken up the torch to advocate for this debilitating disease.

This video is short, but certainly to the point.  Please tune in.

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“This Illness Is Wicked” ~ Dr. Nancy Klimas

Dr. Nancy Klimas, who is an internationally-known expert and advocate for M.E. (Myalgic encephalomyelitis), is seen on this Youtube video.  She describes the multi-symptom disease as “Wicked.”  The video is only 1 minute and 30 seconds long, but in that short time, she gets to the “heart” of the symptoms – they are profound.

She also states that she and other experts regret that the name, “CFS” (Chronic fatigue syndrome) was ever given to the illness.

 

Dear Mr. President

After learning about Kathleen Sebelius’ resignation, I was prompted to write again to President Obama.  I usually write a letter a month, but this will be my second for April.  Will this change mean a different pressure on the reins?  Tighter or looser?  Is it too much to wish for a more positive outlook for the patients suffering from the chronic illness known as ME/CFS?  Of course, time will tell, as it always does.  But, we have to keep a positive mental picture.  And keep writing letters!

*****I’ve put asterisks before the start of each paragraph.  Copying from Word onto my post deletes the separation between paragraphs.

Here is a copy of my letter to the President:

President Barack Obama
The White House
1600 Pennsylvania Avenue
Washington DC 20500

Re: The Department of Health & Human Services; National Institute of Health

Dear Mr. President;

On the occasion of your acceptance of Kathleen Sebelius’ resignation, I take the opportunity to hope that her replacement, Sylvia Mathews Burwell, will do a better job of managing the health and well being of the American people. It will take more than organizational skills if the health of American citizens is taken seriously. And, I hope there will be no more “secret” contracts (IOM) without seeking bids, that have the backing of the “all-powerful” pharmaceutical industry.
*****As you know, I am an advocate for people suffering from the tremendously debilitating chronic illness referred to as ME/CFS (myalgic encephalomyelitis). I say “referred to” because it is not a recognized disease as far as the Department of Health and Human Services is concerned. And yet, how can it be ignored and pushed aside by all the departments under the umbrella of the Health and Human Services? There are more than 1 million patients in the United States, and more than 17 million who have their lives, hopes, goals, and yes, family and friends, snatched from them because of this misunderstood “invisible” illness. Patients’ numbers are growing exponentially, as more and more patients and their doctors are starting to realize that their symptoms are falling under the “umbrella” of ME/CFS.
*****May I recommend an excellent book entitled, “You Don’t LOOK Sick”? The author is Joy H. Selak PhD. To the uninformed about this chronic illness, it gives a very personal documentation of her journey from onset of symptoms to how she deals with her current living situation, and managing her illness.
*****As my daughter’s symptoms grow more intense and increase in number, her quality of life is diminishing. She is suffering constant pain, exhaustive (abnormal) unrelenting fatigue, weakness in extremities, cognitive impairment, painful migraines and so much more. Her chronic illness is getting worse. As her mother, you cannot imagine the emotional effect on me, and we can only assume the effect on her Autistic daughter. My daughter is well aware of the toll it’s taking on her life, and I marvel at her positive and hopeful attitude!
*****I hope the outcome of the IOM contract, now under way, will recognize the CCC criteria, giving these patients a medically recognized name for their illness, which will cause a surge in research and needed funding. They need advocates who have the strength and stamina to forward their cause. They cannot do it alone; they’re sick.
*****Very Sincerely,