Tag Archives: invisible disease

Diagnosis: Chronic Fatigue Syndrome for Julie Rehmeyer, Science Writer for the Washington Post

Prior to reading this post, please be aware that the term, “Chronic Fatigue Syndrome,” is used by a small contingent of the medical community who might be aware of the medical condition.

Most do not know of it by its actual proper and medically correct nameMyalgic Encephalomyelitis (M.E.).  It is incorrectly referred to as CFS, Chronic Fatigue Syndrome or simply, Chronic Fatigue.

I was “rummaging” through my Twitter account, when I came across a tweet from “Canary Film” (Twitter handle, @canaryfilm).  I have a vested interest in the making of that still-in-production film entitled, “Canary in a Coal Mine.”  I supported it, because my daughter has M.E.  The link in the tweet brought me to the Myalgic Encephalomyelitis Daily.

There are several posted articles relating to Myalgic Encephalomyelitis, of course, and a couple of the headlines stood out to me:

  1. What is chronic fatigue syndrome and why aren’t we doing more to treat the illness?
  2. How the definition of chronic fatigue keeps changing.

Both articles, dated October 6, 2014, were written by Julie Rehmeyer, Science Writer, for the Washington Post.  In the first, she describes her physical ailments she was suffering while she visited her neurologist, and what she describes are some of the symptoms suffered by M.E. patients.  Since M.E. is a multi-symptom disease, not all of the patients suffer all of the symptoms all of the time.  She also states some doctors have little understanding of the condition and are skeptical that it exists.

In the second article above, Julie did her research and found out about how the change occurred from the original, correct name of the disease, Myalgic Encephalomyelitis, to the CFS misnomer.  Julie also describes some part that the CDC played in this unfortunate renaming of the horrible disease.  (There is more to the CDC involvement than what she mentions).

I personally feel very badly for Julie, that she received this diagnosis.  I see, through the gradual – over the years – increasing of this debilitating disease, the toll it’s taking on my daughter.


New Video Made By M.E. Patients in the UK: Disease Effects Clearly Described

I found a video made in the UK, with M.E. sufferers making short comments regarding the way they have been “hit” with the disease.  These patients very clearly outline the different ways in which this multi-faceted and multi-symptomed chronic illness manifests itself.

It takes only 4 minutes.  Please view if you have had any questions about how patients are affected by this “invisible” illness.

I am an advocate for M.E. because my daughter is a sufferer, and whenever I come across anything new (to me) about this disease, I need to post that information.

Thank you.


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,

My Letter to President Obama Regarding Myalgic Encephalomyelitis

As you all probably know, from reading some of my blogs, my daughter suffers from the debilitating invisible multi-symptom chronic illness called M.E., or, myalgic encephalomyelitis.  I have joined thousands who advocate for a diagnosis criteria, referred to as the CCC (Canadian Consensus Criteria), which has been adopted by many other countries around the globe.  I believe it should be adopted by the Department of Health and Human Services.  In choosing not to adopt a researched, scientifically-approved criteria, our government is choosing to push these greatly suffering patients aside; letting them flounder without an accepted diagnosis; letting them suffer without medical treatment geared to relieving them of extreme pain and other severe symptoms; and allowing them to lose education, employment and, in reality, the full, active lives they had known before falling severely ill.

Below is a copy of my latest letter to President Barak Obama, trying to obtain attention for these chronically ill patients who, for the most part, cannot advocate for themselves.  They are too sick.

Dear Mr. President;

I have written several letters so far this year, and I have tried to explain to you the urgency for M.E. (commonly referred to as the misnomer, “CFS”), to be recognized as a REAL DISEASE. It is an invisible, multi-symptom, chronic illness, of which there are over 1 million sufferers nationally, and 17 – 20 million worldwide. There are about the same number of sufferers as from HIV/AIDS.

May 12th has been designated as International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Awareness Day, and there will be a peaceful demonstration (permit has been secured) in 2 major U.S. cities: San Francisco and Washington DC, to draw attention to the disease. M.E., is a serious one that not only disables but, also, is fatal. Displayed will be pictures of deceased patients in empty wheelchairs and their obituaries read. Senator Dianne Feinstein (CA) will be given their message.

What is myalgic encephalomyelitis, and why should anyone care about something that requires 11 syllables? But that is not why Steven Straus at the NIH decided to “rebrand” myalgic encephalomyelitis (ME) as “chronic fatigue syndrome” in 1987. That name that Straus chose for this illness has resulted in decades of misconceptions. “So, you’re tired? Everybody is tired, and besides, being tired won’t kill you.”

Wrong assumptions! M.E./Chronic fatigue syndrome does not make people tired. M.E. is a neurological illness that produces inflammation in the brain; thereby, producing great pain all over the body. The inflammation is the result of an acquired immune system dysfunction which prevents the body from fighting viral invasions. There are 8 different herpes viruses that remain in everyone’s body for life. They reproduce, interfering with production of cell energy, causing abnormal bodily fatigue.

Cellular energy reduction causes abnormal heart function; blood flow decreases; lower blood flow leads to orthostatic intolerance (the inability to stand up). This leads to cognitive function decrease; students have to leave school; adults cannot function at work and lose their jobs.

Why has the Department of Health and Human Services buried this illness (M.E.) by calling it CFS? An illness which can kill a healthy teenager (David Tscherpel) after only 18 months? Food for thought.


Mark Your Calendars!

Advocates are promoting ME (myalgic encephalomyelitis) Awareness Day. ME is a misunderstood, neurological disease which causes multiple symptoms and which also can lead to death, when very severe. Please read and find out about it, and spread the message, please.


From: www.ProHealth.com
By Erica Verrillo •  April 20, 2014
May 12th! This Is Your Day!

This year marks the 30th anniversary of the Incline Village outbreak, making this a special May 12th for people with ME/CFS.

For those who are not familiar with the history of May 12th International ME/CFS and FM Awareness Day, it was started in 1992 by Tom Hennessy to promote awareness of chronic neuro-immune diseases, including ME/CFS, FM, MCS and GWI.  Tom chose May 12th as ME/CFS Awareness Day to commemorate the life of Florence Nightingale, who suffered from an illness much like ME/CFS (probably brucellosis). May 12th is her birthday.

Tragically, Tom died in September 2013 after a 25-year battle with ME. He was 59 years old.

Why hold an awareness day?

International awareness days are intended to draw attention to specific medical or ethical problems. They are particularly important for diseases that are poorly understood by…

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