| WANTED:
A dynamic, high-profile celebrity To do for ME/CFS what Elizabeth Taylor did for AIDS, what Jerry Lewis did for muscular dystrophy, and what Michael J. Fox is currently doing for Parkinson’s:
Benefits: Knowing that you can make a difference in people’s lives will bring you many benefits:
How to Apply: Please contact any of the following organizations:
Please Note:
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The Aviva Community Fund competition has returned with another $1 million to encourage Canadians to lead, empower and support community initiatives across the country.
The Aviva Community Fund enables groups or individuals to submit a community initiative for funding. Launched in the fall of 2009, the competition has already provided over $2.5 million in funding to 31 charities and community groups, including youth programs, animal shelters, public schools, camps and centres for those affected by disabilities or illness.
This year, Kati Debelic has decided to be actively involved in the Aviva Community Fund. The idea she submitted is to help provide funding to help furnish a new Complex Chronic Diseases Clinic in Vancouver with much-needed medical equipment. The clinic will be opening its doors in 2013 in Vancouver, with Dr. Alison Bested as its medical director. 
Dr. Bested is a a hematological pathologist specializing in chronic fatigue syndrome and fibromyalgia.
There are two ways to vote:
Note: You can vote every day from October 1st to October 15th.
On April 21, 2011 I posted about a town hall meeting in which President Obama promised Courtney Miller to look into ME/CFS research at the NIH.
Courtney Miller- Reno, Nevada Town Hall Meeting April 21, 2011
Today, Cort Johnson of Phoenix Rising reports that, in a letter addressed to Courtney Miller last July 25, President Obama asked his Deputy Chief of Staff for Policy, Nancy-Ann DeParle, to “stay in touch with Dr. Collins at NIH and Dr. Koh at HHS about my interest in their efforts on CFS.”
Cort Johnson notes that this is the first time the Deputy Chief of Staff was ever asked to follow up at the Department of Health and Human Services on a specific disease.
Cort suggests we all to write a thank you letter to President Obama because it’s “important that the President know that many patients and their families are affected by CFS and that we are grateful for his efforts.”
To read Cort Johnson’s full report and the letter from President Obama to Courtney Miller, click here.
You can also read Llewellyn King’s column related to this topic here.
This post is for Evelyn Metts (and others) who wrote me about her 26-year-old son who has just been diagnosed with ME (or CFS). She asked how people could regain control of their lives considering there is no cure for ME. I suggested a few things for her son to try, but Giles Meehan’s advice in the video below is much more wide-ranging.
The video contains an overview of the ten main areas to look at for the treatment of ME, which are the things that have really helped me and many others cope with this illness.
Giles says that, since there are many different triggers, predispositions, symptoms and even causes of ME, different people can respond differently to the same treatments. So he recommends using a planned approach to implement some of the main suggestions, and then try other treatments or “bits of the jigsaw”, as he puts it. He also emphasizes how important it is to give a treatment the time to take effect.
Overall, really good advice and an excellent video.
Here are the ten main areas Giles suggests we look at for the treatment of ME:
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For Giles Meehan’s website click here.
According to Dr. Jamie Deckoff Jones’ June 23 blog post, Andrew McGorrian was responding very well to the treatment he was getting at her clinic in Hawaii. She reported that he was doing “brilliantly” and that ”what has happened so far is very encouraging and bodes well for Andrew to have an improved quality of life going forward, using the gentlest of treatments.”
It seemed like good news, so on June 26th I decided to post an update on Andrew’s condition. A few weeks later Jacqueline McGorrian McMurdie wrote me, wanting the “truth to be shared’:
Hello Im Andrews Mum we are sorry to inform you all that Dr Jamies treatment did not take affect on Andrew. He was given medication prescribed to the doctor herself and this was totally unacceptable. Blood tests werent complete when she said Andrew was to have an IV outside the enviroment of a sterile hospital. We said no to this as we would not take such a risk with a young sick child. Andrew continued to sleep not as long but for short intervals for an hour or so and we were told these were cap naps and didnt need to be mentioned but i believe in the truth to be shared as it will help others decide on a course of treatment. We have listen to a lot of people who have tried so many treatments and we thought it would help our son get a better quality of life but it didnt work for him and we are so disappointed with that outcome.
On August 1st, 2012, Jacqueline issued a public statement about her son’s treatment in Hawaii, “to let the public know in detail what happened, both to tell my side of the story and to provide full information to those considering treatment by Dr. Deckoff-Jones in the future”. To read the statement follow this link: Summary of Treatment by Dr. Jamie-Deckoff Jones, M.D.– interview by Lisa Petrison.
It’s very unfortunate that Andrew and his mom had to go through such an ordeal.
Jacqueline has started a new blog, Hope for Andrew, for public discussion, comments and questions concerning her family’s involvement with Dr. Jamie Deckoff-Jones and Little Acorns.
Jamie Deckoff-Jones wrote another blog post on this topic just a few days ago: Reply to Jacqueline McGorrian McMurdie and Lisa Petrison
On a more positive note, I hear that Andrew has now found a new treatment plan. We all wish him well!
We just got back from the country for a little R&R away from the urban jungle. We went to the Laurentians, just an hour’s drive from Montreal.
The Laurentians region, or Les Laurentides in French, is famous for its gentle rolling mountains, crystal blue lakes, meandering rivers, great resorts and quaint towns and villages that draw vacationers all year round in search of clean air and lots of ‘elbowroom’.
We stayed in a rustic little cottage without TV and Internet connection, and forgot about the bustling city for a little while. The kids loved it and the dog was in heaven.
Here are a few pics …
Our dog seemed to really appreciate being off the leash…
Kids and water go together like spaghetti and meatballs,
… or ham and cheese!
Lots of beautiful wildflowers everywhere!
Has anyone ever asked you what it’s like to live with ME/CFS?
Most people think you’re just ‘tired’ or ‘anxious’. Just like the HR person in charge of disability claims at my workplace said to me, “I don’t want you to get anxious about this or you’re going to have a relapse.”
Since she deals with claimants on a daily basis I assumed she would be cognizant of the particular challenges of their illnesses. Perhaps she is, but she doesn’t seem to know much about mine.
She, like many others, has this preconceived idea of what it means to have what most people refer to as chronic fatigue. They just think it’s about “being tired all the time” or “getting stressed or anxious”.
Unfortunately, the reality is that most people don’t know very much about Myalgic Encephalomyelitis or Chronic Fatigue Syndrome, and they don’t take the time to find out. They have their own lives to live. I get that. But those whose job it is to help navigate you through the roadblocks should at least make a concerted effort to be better informed about it or ask you how you’re coping.
During the first few years of my illness, people regularly asked me how I was. It’s old news now, but it’s still relevant to me! They believe since I’m not going to die- at least not anytime soon- I must be fine. And they avoid the subject altogether now.
Once in a while someone may ask a seemingly unimportant question, until they realize they’ve just stumbled into a minefield- and then you get this peculiar stare from them. 
For example, someone asked me why I don’t do Taekwondo with my children and husband. She probably assumed it’s because I don’t like the sport or don’t do sports. So when I explained the reason why I cannot do any sport I got the ‘stare’ that said it all.
Some people actually think you’re a malingerer or even lazy. They don’t understand, and don’t know that if you have ME/CFS you cannot take part in any cardiovascular exercise. People with ME/CFS have an extremely low anaerobic threshold. Severe sufferers can’t even go out for walks. A short walk for them can be similar to the effects of a healthy person running a marathon.
Most people are usually polite and say something like, “Oh yeah, my cousin’s friend has that disease and can’t do very much.” But then they add, “Well you look alright. You must be one of the lucky ones.”
Looks can be deceiving, as we all know. People with this illness can actually ‘look’ healthy but feel miserable. That’s one of the ironies of having ME/CFS. Most people cannot ‘see’ how you are feeling; only those really close to you can tell. Only they recognize that when the sparkle in your eyes fades you are feeling abysmally dreadful.
In the end, the people that take the time to ask you how you are feeling on a regular basis are those who really care about you, those who really count.
I’m very fortunate to be surrounded by many such people. I hope you are too.
One of my all-time favourite songs and bands…
Last May I posted about a little boy named Andrew McGorrian in Northern Ireland with severe ME/CFS whose family and friends were trying to raise money for treatment in the United States with Dr. Jamie Deckoff-Jones.
I am happy to report that Andrew, who has been in treatment for a few weeks now, has been improving. After three years of being completely bedridden Andrew is now awake for 9-10 hours a day, instead of 4. 
Dr. Jamie reports that he is doing “brilliantly” and that “what has happened so far is very encouraging and bodes well for Andrew to have an improved quality of life going forward, using the gentlest of treatments.”
To read Dr. Jamie’s blogpost click here.
On Saturday May 12 please wear blue and save a 
blue ribbon to your computer to help raise awareness for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, or purple for Fibromyalgia.
The month of May is ME/CFS and FM Awareness Month, and 2012 marks the 20th anniversary for an International May 12th Awareness Day.
The idea originated with Tom Hennessy, the founder of RESCIND (Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases). Mr. Hennessy designated May 12 as the International Awareness Day for the spectrum of illnesses he called Chronic Immunological and Neurological Diseases (CIND).
May 12 was chosen as it corresponded with the birthdate of Florence Nightingale, the English army nurse who inspired the founding of the International Red Cross.
Nightingale became chronically ill in her mid-thirties with an ME/CFS-like illness. She spent the last 50 years of her life virtually bedridden. Despite suffering from an incapacitating illness, she managed to found the world’s first School of Nursing.
This determined woman of the late 19th century is a symbol of inspiration and hope to sufferers of these chronic disorders in the late 20th century.
To connect with May 12th International Awareness events click the following links:
Kati says it’s almost time to deliver the petition to the Canadian Minister of Health, so if
you haven’t signed it yet please click here . 
Also, don’t forget to share this petition with family and friends on Facebook and other social media.
Here’s a message from the petition organizer, Kati Debelic in Port Moody, British Columbia:
In the light of the Harper government funding 100 million $ for brain research, but mentioning most diseases that would benefit but not ME or fibromyalgia.
And in the light of a recent paper suggesting that Ontario rheumatologists were thinking of dropping fibromyalgia as part of the diseases they treat (they feel GP’s can now take care of them just as well),
I feel that this petition is very relevant to tell the Canadian government that it is not ok to sweep us under the carpet (once more) and to start contributing to international research and start educating our physicians on the severity and the neglect of our illness.
I have been invited to an interview for a radio show called DisRespect (from Hamilton, Ont) and we will mention this petition so I will wait a week or 2 before handing it out to maximize the number of signatures.
Thank you to all for signing and for your efforts in sharing this very important petition.
Kati
Posted By Kati Debelic Petition Organizer on May 08, 2012
Raising Awareness for ME/CFS 
