ME/CFS patients sicker than AIDS patients

This week leads up to May 12th, which is International ME/CFS & FM Awareness Day.

There was a rally on May 8th at Queen's Park, (Ontario's parliament) in which several Ontario gov't representatives spoke. So nice to see them stepping up to the plate!

The mayor of Toronto has declared May 12th to be Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivities Awareness Day (Found Here) Again, nice to see!

Dr. Nancy Klimas, has said (she treats AIDs patients as well as ME/CFS patients) saying "I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V" (interview here)

Dr. Alison Bested said the same thing (video below) about her patients.

I am proud of my country for the steps it has taken in ME/CFS/MCS acknowledgement, but more needs to be done. I'm not sure why it seems to lose something in the translation, but it just does.

For example, if someone were to say "My mother has Alzheimer's" reasonable people would not respond with, "Oh ya, I sometimes forget where I put my glasses so I know exactly what it's like. Your mother should just exercise more, or perhaps do things like crossword puzzles, to improve her memory. Forgetting things is just part of life and I have to deal with it, so she should too."

I have heard the extreme fatigue experienced by many ME/CFS sufferers being compared to the fatigue experienced by people with cancer. Reasonable people would not dare to suggest to the cancer patient, "You just need to get more exercise" or "I get tired too, it's just part of life" yet .... those are common statements to people with ME/CFS.

It is worse though, because the extreme exhaustion is only one small part of it. ME affects so many other systems in the body and produces a whole list of other problems... like this explanation: (taken from here at the cfids.org website)

"Although its name trivializes the illness as little more than mere tiredness, chronic fatigue syndrome (CFS), also known as chronic fatigue and immune dysfunction syndrome (CFIDS), brings with it a constellation of debilitating symptoms.

CFS is characterized by incapacitating fatigue (experienced as profound exhaustion and extremely poor stamina) and problems with concentration and short-term memory. It is also accompanied by flu-like symptoms such as pain in the joints and muscles, unrefreshing sleep, tender lymph nodes, sore throat and headache. A distinctive characteristic of the illness is post-exertional malaise, a worsening of symptoms following physical or mental exertion occurring within 12-48 hours of the exertion and requiring an extended recovery period" and even more symptoms Additional symptoms are reported by people with CFS (PWCs) such as word-finding difficulties, inability to comprehend/retain what is read, inability to calculate numbers and impairment of speech and/or reasoning. PWCs may also have visual disturbances (blurring, sensitivity to light, eye pain, need for frequent prescription changes); psychological problems (depression, irritability, anxiety, panic attacks, personality changes, mood swings); chills and night sweats; shortness of breath; dizziness and balance problems; sensitivity to heat and/or cold; alcohol intolerance; irregular heartbeat; irritable bowel (abdominal pain, diarrhea, constipation, intestinal gas); low-grade fever or low body temperature; numbness, tingling and/or burning sensations in the face or extremities; dryness of the mouth and eyes (sicca syndrome); gynecological problems including PMS and endometriosis; chest pains; rashes; ringing in the ears (tinnitus); allergies and sensitivities to noise/sound, odors, chemicals and medications; weight changes without changes in diet; light-headedness; mental fogginess; fainting; muscle twitching; and seizures"

Video of Dr. Alison Bested speaking at Queen's Park Toronto Ontario Canada - May 2012

My M.E. (CFS) and Fibromyalgia Story

Dominique, over at her website, Becoming Visible 4 ME, has posted my CFS/ME story for this month. (M.E. being Myalgic Encephalomyelitis which is another, more appropriate name for Chronic Fatigue Syndrome).

Her website is dedicated to making ME more visible. Each month, she publishes a CFS/ME story in order to accomplish this. From her other site, 4 Walls and a View, she writes:

"We are now onto our fifth story of this year. I find it amazing as I read each new story, how vastly different they are … and yet … how similar they are. Linda’s story, for me personally, was quite riveting. I was completely taken in the very first time I read it. Here is a excerpt of her unique and captivating story: As I stopped to look around, a “sensation” shot up the left side of my neck, then"...

Click here to read my full story at Becoming Visible 4 Me Once at the site, my story is featured in June, 2011. (There is a new story posted each month) By clicking on my picture, it will bring up the full story.

Dominique, who also has ME, has been a great inspiration, support and help to me in my battle with CFS and Fibromyalgia.

I've posted these videos from Get Well From ME before, but he explains ME/CFS so well, they bear repeating. Over the course of these two videos, he touches on all aspects of this illness.




He goes into more detail in this one: