Thursday, May 10, 2012

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 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


Renee said...

Linda, This is an EXCELLENT post on CFS/ME. Wow. I am going to write something later on May 12th and hope it is okay I give you a shout out on this...I am impressed. I also see myself in what you have written about symptoms. I have been suspicious since knowing the Lyme is gone and I STILL am having problems that this is CFS still hanging around, but don't know for sure what is going on. Just trying to be patient here with little success. Again, this is so good, thank you for sharing it and congrats Ontario and Canada for stepping up to the plate!!!

At Home on the Rock... said...

Thanks, Renee! And's certainly ok to go ahead and mention my post. We still have a way to go though (ie disability benefits) but it's still steps in the right direction for sure.

sophia blue said...

A good way to work through the core workout tissues is with doing planks. This exercise doesn’t call for any gear, but to offer comfort, having a yoga mat may be ideal. This train begins with the particular person confronted down on her stomach with arms tucked within the chest to make a triangle.

upnorth said...

Great post. Thanks for such a wonderful about what M.E. is about and why we need better support and advocacy across the board. (and p.s., that was my specialist speaking at Queens Park, she is an amazing advocate).

At Home on the Rock... said...

Thanks, Upnorth.

Wow...she's your specialist? That's fantastic! She's one of the best in our country.

Anonymous said...

Hi, I was reading about homeschooling and newfoundland and I came across your page. Congrats, you have raised your kids beautifully. As I briefly read about CFS on your site, I saw that it is immunity problem, I would suggest researching LDN, low dosage naltrexone. It boosts the bodies immunity without side effects so the body can fight and be strong on its own. I am not a doctor but please search it. It is available in pharmacies in Toronto. Your doctor might not know about it but you can print out the research and take it to them and ask them for a prescription. Good Luck dear, god bless

At Home on the Rock... said...

Thanks, Anonymous for your comments. I will look into that for sure :)