Tag Archives: diagnosis criteria

My 6th Letter to President Barak Obama

Today, I mailed my sixth letter to President Obama, regarding advocacy for M.E. (myalgic encephalomyelitis).  In this letter, I quoted an excerpt from an M.E. sufferer who lives in the UK.  Her name is: Hayley-Eszti and by clicking on her name, you will be taken to her blog.

Here is the latest letter to the President:

Dear Mr. President;
Yesterday, I celebrated another birthday, and gratefully, have enjoyed a healthy life: however, there are too many people in this United States of America and in the world who, through no fault of their own, suffer pain and weakness.

My focus and advocacy is M.E. (myalgic encephalomyelitis). My daughter is one who suffers from the “invisible” disease that shows no outward signs of illness in sufferers; however, their lives are so affected as to have them cut short. Yes, some die, but the majority of the more than 1 million patients in the US and between 17 and 20 million globally, are relegated to house or bed, or have their quality of life diminished so that, in order to perform a daily task that would be “normal” and taken for granted by most people, performing simple tasks will force them to bed to “recover” from increased bodily pain and great abnormal fatigue.

Below are quotes from a blog, written in honor of International M.E. Week (May 12th), by a lovely 22-year-old UK patient who describes herself as a “bargain hunter/professional sleeper/lover of patterned trousers”:

“M.E. dominates every part of my life and I blog about my journey towards (hopeful) recovery and how I am trying to live a normal(ish) life whilst being a full time ill person. M.E is an illness that leaves a lot of people needing wheelchairs, but they aren’t permanently disabled which can leave a lot of sufferers being accused of faking their disability. Not all disabled people are permanent wheelchair users, and not all disabled people necessarily even use wheelchairs. The sooner that misconception is demolished the better.

Sufferers can (as long as they are well enough to get out of bed) hide those black eyes, put foundation on their pale grey skin, put clothes on, and smile as if nothing is wrong. Weeks prior to a trip out, are normally spent at home resting and preparing just for a few hours of normality, and weeks are spent in pain recovering from that one afternoon too. I think that is why a lot of people underestimate the severity of the illness – the real extent of it is almost never seen. M.E is alive inside of me, but the real me inside is just about surviving; she is definitely not living.”

Mr. Obama, please communicate with the HHS and Ms. Sebelius, letting her know that research to find a cure is important for these sufferers. First, the Canadian Consensus Criteria should be the US accepted diagnosis criteria. The illegal IOM contract to decide a diagnosis criteria is a waste of taxpayers’ money, when there is accepted criteria already. How can members of the panel, who are not experts on M.E., be chosen to decide such an important issue?

Did you know that there are the approximately same number of AIDS victims as there are M.E. patients in the US?  M.E. leaves the patients too weak, and they cannot advocate for themselves; hence, we, who are fortunately healthy and who care for our beautiful children, must do our best to raise our voices.

With Sincerest Wishes,

How the U. S. Government is Abusing M.E. Patient Rights

Anyone who has been following blogs and tweets that highlight the plight of M.E. (myalgic encephalomyelitis) sufferers will know how desperate this fight is.

Myalgic Encephalomyelitis Awareness Blue Ribbon

Myalgic Encephalomyelitis Awareness Blue Ribbon

The US government through the Health and Human Services Department (HHS) and NIH (National Institute of Health) is doing all it can to push down and stop the fight for proper recognition of M.E. as a neurological, not a psychological, chronic illness.

Please watch this video courtesy of Jeannette Burmeister, to view experts, patients, and advocates addressing the IOM (Institute of Medicine) at its first public hearing (it isn’t a long video, but brings out the important highlights).  The IOM has been charged, by the HHS, and with the approval of the NIH, to come up with a diagnosis criteria.  (BTW, it has been suggested that the IOM might even change the name of the disease to “Chronic Multi-symptom Illness,” like they did with the Gulf War Syndrome – what a fiasco for the veterans that was!)

The HHS contracted secretly with the IOM at a cost of taxpayers’ money of $1 million, to convene a panel of experts and non-experts of this disease (non-experts outweigh experts on this panel), to “work” on the criteria.  This is being terribly mishandled by our government, in the face of medical experts, patients, researchers, and advocates, who say “adopt the CCC” (Canadian Consensus Criteria).  Money is the underlying reason why M.E. sufferers are faring so poorly in more ways than one.  Insurance companies don’t want to pay for all the expensive tests that are required to establish diagnoses.

The CCC has been accepted by many countries around the world as their criteria for diagnosing M.E., and it would give verification and acceptance for the more than 1 million M.E. patients in the U.S. (the same number as HIV/AIDS patients) who are suffering with this debilitating disease.

Please do what you can to forward the advocacy for these patients who, for the most part, have lost their lives (literally) and those who have seen their former rich, qualitative, productive lives taken away by this debilitating illness.

And, what is the ray of sunshine in all of this?  We have hope.  Without hope, all is lost.

 

sunshine

Images taken from bing dot com