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

M.E./CFS Awareness Video

Here is a video about M.E. (C.F.S.) which I recently took part in. It's produced out of the U.K. by Giles Meehan (Get Well From ME)

Giles has produced several videos about M.E. (some of which I've posted elsewhere on this blog). They are all very informative.

I have two lines in it...can you spot me?

Sunrises and Icebergs

I posted these on my facebook page, but for those of you not on my fb, I'm posting them here too.

A recent sunrise Click on pictures to enlarge...



A couple of icebergs that have stopped by for a visit. There are a lot off shore, but at present too far out for a picture. Hopefully, there will be a lot more in the days and weeks to come.

This one is a bit blurry and the iceberg appears small, but comparing it to the boat behind it, puts the size into perspective.

Interesting Insight

from Brittney today. She posted the following on her Facebook page:

"For those who are in piano lessons....even if it is sooo boring and hard... don't give it up! I absolutely love sitting down and playing now! So relaxing! Thanks mom(Linda) for making me stay with it :) "


So much for the thinking that says we shouldn't make our kids do anything they don't want to do! There have been some very intense moments over the years...let me tell you ;) However....she stuck with it (wasn't always her choice ;) ) and is obviously glad today that she did. Me too --- I just love to hear her play!

Jake and His Magazine Interview

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Jake was recently interviewed by the Homeschooling Magazine Homeschool Horizons about his cookie business

The story starts with...


"Young Entrepreneurs – Pouch Cove Cookie Company
by SHANNON RATCLIFFE on FEBRUARY 16, 2012

Here at Homeschool Horizons, we recognize that the Entrepreneurial Spirit is alive and well in the homeschool community. With parents who encourage children to develop their passions, and budding business people who are not trapped all day in a classroom, we believe that the future of creative business is in these vibrant youngsters.

We’d like to introduce you to Jake, the future Cookie King of Newfoundland:"
For the rest of the interview...click here


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Next Steps for Brittney

Seems like yesterday she was like this .....




and now.....




It's hard for me to believe, but we now have two children in post secondary education.

Brittney has been busy for some time mapping out a route for her future. She took into consideration many things...such as...

~ Her deep interest in Science (Biology). Many times she's gotten way off track from her other studies because she couldn't put the Biology book down.

~ Her life-long interest in food *grin*

~ My health issues and improvement through alternative treatments (homeopath, naturopath, holistic nutrition)

~ Her own health improvement and overall well being through the same naturopath and holistic nutrition


A Holistic Nutritional Consultant.

From there she researched schools and courses until she found one that met her needs. It was a long route tweaking here and there but now that she's decided, it is a perfect fit for her. Once done this course, she wants to also pursue massage therapy but will concentrate on one area at a time.

She's registered, the books have arrived and she's now on her way. She's also started her own blog found here in case you want to follow along her journey.

Way to go, Brittney!

When you really matter

Saw this on facebook and it really caught my eye....




When you really matter to someone....they *will always* make time and you won't be last on their list.....