WANTED: A dynamic …


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:

  • raise awareness,
  • raise money, and
  • get rid of the stigma attached to ME/CFS.

Basic duties:

  • Advocating for a cure for ME/CFS
  • Taking part in media campaigns
  • Creating a foundation (in your name if you wish)
  • Lobbying various groups

Benefits: Knowing that you can make a difference in people’s lives will bring you many benefits:

  • You will feel a sense of achievement and motivation, generated from your desire and drive to help others.
  • You will strengthen your personal/professional mission and vision by expanding your horizons.
  • You will feel good about yourself, which in turn increases your overall sense of physical and mental well-being.

How to Apply: Please contact any of the following organizations:

Please Note: 

  • You will be representing the needs and hopes of ME/CFS sufferers worldwide.
  • You will also be ensuring that ME/CFS sufferers are able to speak out, by helping to express their views and defend their rights.
Posted in Advocacy, Celebrities with ME/CFS, Raising Awareness | Tagged , , , , , , | 4 Comments

New Clinic Needs Your Vote

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:

  1. To vote on the Aviva website, click here.
  2. To vote on Facebook, “like” the Aviva Community Fund  then click on the yellow button. Click here.

Note: You can vote every day from October 1st to October 15th.

Posted in Fundraising Efforts | Tagged , , | 1 Comment

President Obama Lives Up to His Promise

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.

Posted in President Obama, Research | Tagged , , , , , , , | 2 Comments

How to Regain Control of Your LIfe

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:

  1. Rest (sleep, gentle exercise, pacing within limits, but GET and CBT don’t help with ME)
  2. Good food and nutrition (lots of suggestions)
  3. Support mitochondria (which make energy in our cells)
  4. Detox (cut down on and try to avoid a number of products)
  5. Chiropractic, acupressure and reflexology therapies, pain control
  6. Hormones (thyroid problems, the pill and HRT)
  7. Circulation (blood circulation or heart problems, POTS, beta blockers)
  8. Emotions and Life (life difficulties affecting us)
  9. Immune System (improve the body’s antioxidant status to help the immune system and detoxification)
  10. Medicine (a number of pharmaceuticals and even some herbs that may help)

For Giles Meehan’s website click here.

Posted in Treatments | Tagged , , | 2 Comments

Andrew McGorrian’s ‘mis-treatment’ in Hawaii

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!

Posted in Children with ME/CFS, Treatments | Tagged , , , , | 7 Comments

Nice to get away

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!

Posted in Personal, Relaxation | Tagged , | 2 Comments

What’s it like to live with ME/CFS?

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…

Posted in Personal, Raising Awareness, Respect, What is ME/CFS | Tagged , , | 2 Comments