May 12, 2010 marks the 18th anniversary of

International Awareness Day for ME/CFS and FMS

AUSTRALIA

Lesley McLeod

FIND A CURE, AUSTRALIA

I did not do as much as I had hoped this year but I did put some articles about cfs/me and some letters that I wrote to Government and a poem to celebrate mecfs awareness week on my wordpress blog. sleepysunshine.wordpress.com

CANADA

ALBERTA

EDMONTON,

Cheryl Kowalewski, Guaigroup Leader

FIBROFREE, EDMONTON, ALBERTA

FIBROFREE, Edmonton's Fibromyalgia Guaifenesin Recovery Group, had a display from 9:00 am to 5:00 pm on May 12th at the University of Alberta Hospital. We were promoting awareness of Fibromyalgia, the Fibromyalgia Treatment Center in Marina del Rey, California, and the Guaifenesin protocol which is changing the lives of many of our 160 members.

Diane Mowat, Vice-President

ME SOCIETY OF EDMONTON

Dr. Gordon Broderick, one of the CFIDS scientists ocated at the University of Alberta, Edmonton, was our guest speaker. We are very fortunate to have him within our community. The M.E. Society of Edmonton (CFS) has chosen him as our 2010 Florence Nightingale Award Recipient. He is passionate about his research in the ME/CFS field, committed to increasing awareness about the illness to the public as well as to the medical students he teaches. Dr. Broderick is very gracious with his time, staying afterwards, having individual conversations and answering numerous questions.

We also had a surprise visitor attend our event, Dr. Pierre Flor-Henry. He was very interested in hearing Dr. Broderick's lecture and we also enjoyed conversations with him after the presentation.

BRITISH COLUMBIA

PENTICTON, BRITISH COLUMBIA

Sheryl Ann Wilson, Penticton, British Columbia

SOUTH OKANAGAN FM-ME SUPPORT ASSOCIATION

South Okanagan FM-ME Association had a special speaker, Dr. Ronald Cridland, Kelowna Sleep Specialist, who spoke of his 2009 FM Sleep Study and also gave details about Sleep and Fibromyalgia for us to learn. He is a Diplomat, American Board of Sleep Medicine, and believes that sleep can do a lot to assist in the betterment of the pain of Fibromyalgia and worked with persons with Fibromyalgia for over a decade

Other than that we gave special certificates to Board and certain helpful members. and. . .

Dear Media / Press Contact:

VANCOUVER

Sherri Todd, Director for British Columbia, Canada

NATIONAL ME/FM ACTION NETWORK

On Monday, May 17th, 2010, I spoke at a local MEFM support group, that meets monthly in the boardroom at the Arthritis Society, in Vancouver. I had to postpone it last month when I had the blood poisoning in my leg, so was pleased to be able to finally meet with them.

In brief, I spoke a little about me and my history, but the majority was to updated them on the National ME/FM Action Network and all its projects, the present work on a brand-new website being developed with the latest technology. I also informed them about our resource book, TEACH-ME for teachers and parents of children with ME/CFS and FMS.

I also advised them about our Network hosting the 10^th International IACFS/ME research and clinical conference in September 2011 in Ottawa and my work on spreading awareness on ME/CFS and FMS.

The meeting went very well and I conveyed the message of how important it is that they do their part in bringing awareness and that each and every person can make a difference in the way they are capable. Small steps lead to big results.

MANITOBA

Karen Klos, Winnipeg, Manitoba

FIBROMYALGIA SUPPORT GROUP OF WINNIPEG, INC.

To help create awareness our group has an ad running on our cities Community Relations Bus. This bus travels a different route of the city everyday for the entire month of May. Last year they continued it well into June for us.

We continue to do this every year now as we have had a great response to it. A lot more calls to our office and hits to our website.

ONTARIO

BROCKVILLE

Mary Fairburn, Brockville, Ontario

BROCKVILLE, ME ASSOCIATION

We had two booths at different malls in Brockville, Ontario. At the booth, we offered information packages, pamphlets, book marks and we had a free draw for a basket of goodies. We also had a donation jar and had cards made up with our logo, the turtle, and magnets with information on them with the email address and web site. We had a selection of library books from our library as well as posters showing our recent events, i.e. the Mayor’s walk, pictures with the local MP and MPP's as well as the mayor.

We had radio advertising with an interview of one of our members early in the morning of May 12th. advertising our booths and we had newspaper advertising in local papers three weeks prior to May 12th. Each week was a different article stating information about ME/CFS and FM.

We had a very good turn out from people who specifically came to talk to us about their illness. Since we have a monthly meeting, the last Thursday of each month, many people wanted to join us and see what we were all about.

We gave them web addresses of other organizations that they could access. For example MEAO, the National ME/FM Action Network, Drs. Bested’s and Bell's web sites.

A member of The Brockville ME Association met with Mr. Guy Lauzon, Member of Parliament and National Conservative Caucus Chair, April 23rd with a reporter from The Morrisburg Leader, a local newspaper. The main points covered were:

- 724,000 people in Canada have M.E/Fibromyalgia (Statistics Canada, 2005)

-The devastating impact of ME/CFS & FM

-Canada Bans Blood donations from people with chronic fatigue

-The discovery of the XMRV virus and what it means

-Only one clinic in Canada, which is in Toronto at the Women's College Hospital, where ME/CFS & FM is diagnosed and treated.

-The personal effects of the disease.

-The need for Government funding for research and training for doctors for early diagnoses.

I presented Dr. Bested's book to Mr. Lauzon and a picture was taken. I wore my MEAO t-shirt as representing both Ontario ME and our local ME Assoc.

Mr. Lauzon said that the more we make this invisible illness know to government representatives the better it will be.

He suggested that I get in touch with our provincial representative because the money is given to the provinces for health care spending and they have no say as to what it is spent on.

My next step is to contact the provincial MPP.

Thanks for your interest. If enough people make this illness visible we can make a change.

THE MORRISBURG LEADER, Local Newspaper

By: R. Comfort, Leader staff

MORRISBURG

International M.E. and Fibromyalgia Awareness Day is May 12

Local sufferer strives to make invisible illness visible

Most people dont know what MyalgicEncephalomyelitis (M.E.) or Fibromyalgia are even though 724,000 Canadians suffer from the illness. We are working to make this invisible illness visible, says Mary Fairbairn, who was diagnosed with fibromyalgia about four years ago. She explains that the disease is invisible because often its sufferers dont look sick even though they are often affected to the point that some days they cant even get out of bed. Quite often the illness is so severe that they can no longer work,

like Fairbairn. Myalgic Encephalomyelitis (M.E.) is a severe chronic illness that is more commonly known as chronic fatigue syndrome.A person with M.E. has a number of serious symptoms other than fatigue. The illness affects the brain, central nervous system, heart, muscles and endocrine system and is similar to Fibromyalgia.

Fibromyalgia Syndrome (FM) is a chronic and complex disorder of the musculoskeletal system, characterized by widespread pain amplification and multiple tender points. A wide range of symptoms contribute to the disabling nature of this illness. Although M.E. and FM are not the same, there is a significant overlap of symptoms, leading some researchers to believe they are related conditions

Because there are so many symptoms and the affects of the disease change from day to day, Fairbairn says it is really hard to make people who do not suffer from it understand that herdisease is real.

Quite often people suffering from fibromyalgia and M.E. dont look sick, says Fairbairn. Thats mostly because when we are having a really bad day, people dont see us because w are home in bed. Although she was diagnosed with FM and M.E. four years ago, Fairbairn estimates that she has been suffering from its affects for about 10 years.

As part of raising awareness of M.E and Fibromyalgia, Fairbairn decided to share her story with local MP Guy Lauzon, who arranged for her to meet with The Leader to further her efforts.

We need more people with important names to become aware of this, said Fairbairn, who was thrilled Lauzon took the time to meet her and listen to her.

Its wonderful to have the support of our MP, said the Williamsburg resident. This is the first time that someone other than a sickperson has listened to me.

Lauzon said that taking the time to listen to his constituents is his job. I cant make any promises about the results, but I can guarantee that I will try, he said. If one person gets diagnosed because we took the time to listen, we all benefit, said Lauzon.

Mary Fairbairn recently presented MP Guy Lauzon with the book Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia

by Alison C. Bested of the Womens College Hospital, the only clinic in Canada that diagnoses and treats M.E. and FM.

TORONTO

Transcript from the Hansard Report on Proceedings in the Legislature of the Government of Ontario.

This year,2010, marks the 18th year for the May 12th Awareness Day. In Canada, May 12th is included in Health Canada’s Calendar of Health Promotion Days as “Fibromyalgia and Chronic Fatigue Syndrome National Awareness Day”. The month of May is also used to raise awareness for Multiple Chemical Sensitivity and Toxic Injury Awareness.

Chronic Fatigue Syndrome or Myalgic Encephalomyelitis, as it is known in Britain is an acquired illness that affects all body systems; predominately the neurological, endocrine and immune systems. It is classified as a neurological illness in the WHO International Classification of Diseases. ME/CFS can be severely debilitating. Although the exact cause is unknown, ME/CFS has developed after a viral illness. Multiple factors that stress body systems may be involved, including physical trauma and environmental pollutants. ME/CFS affects all age groups, including children, all racial/ethnic groups and all socioeconomic strata. It is more common in females. This may be because of circulatory factors, females having a smaller heart and lower blood volume than males and have a lesser ability to cope with pathogens & toxins.

Have you ever had a flu so severe that you sleep all day and every time you try to get up, you are so weak you have an urgent need to lie down before you fall down? That is what the acute phase of ME/CFS is like and it can last for months or years. In the chronic stage, the majority of patients have some periods of time of the day that they can function but not at the level that they did before they became ill. Patients face many physical, mental, educational, social and mental challenges which also affects their families and work opportunities. One thing that makes ME/CFS so difficult to manage is that symptoms fluctuate from day to day and from hour to hour, even when the patient is able to do limited activity. Many remain too ill to work while others with milder ME/CFS are able to work part-time. Presently there is no known cure. Patients are treated on an individual basis. Early diagnosis and treatment may lesson the severity of ME/CFS in some patients. Medications must be closely monitored and given in smaller doses. Exercise must be individualized and in some cases is not tolerated at all.

Research is ongoing and there is hope that there will be a lab marker to diagnose ME/CFS soon. In recent years researchers have detected the presence of XMRV ( xnetropic murine leukemia virus- related virus) in many CFS patient samples. Other areas of research include neuropathy and brain imaging, neurocognitive dysfunction and abnormalities in the immune system.

Fibromyalgia Syndrome involves widespread pain of the muscles, ligaments and tendons.There appears to be a genetic factor in some patients. A physical trauma, such as whiplash or spinal injury can trigger FMS in some patients. In other cases it comes on gradually with no known cause. FMS and ME/CFS share many of the same characteristics and are considered by some researchers to be variations of the same illness. Some unfortunate souls are afflicted with both conditions. FMS is more easily diagnosed, widespread pain and tender points being the criteria. Again treatment must be individualized, exercise if tolerated, stretching and gentle exercising are best. It often takes time and experimentation to find the right combination of medications to relieve the pain of Fibromyalgia. As with ME/CFS there is no cure but there have been new medications such as Lyrica that have been created to treat FMS. Some areas of research involve the central nervous system imaging, autonomic nervous system, sleep dysfunctions and pain and neurochemicals.

Most of us with these conditions have tried everything to get our previous life back. As I told my family Doctor, shortly after my diagnosis of ME/CFS, I would try walking on hot coals, should there be a shred of evidence that it would help. Now I take a more reasoned approach, take my supplements, medication for my sleep disorder, chiropractic for my aches and pains, tai chi chih and walking, as my energy level allows. I’m ready to doff my socks and shoes should the hot coals prove effective.

There are awesome people out there working on our behalf. The National ME/FM Action Network was founded in 1993 by Lydia Neilson, who has ME/CFS. She along with others, including medical advisors keep on top of what’s happening and send out a newsletter quarterly. They have been front and centre bringing awareness for ME/CFS & FMS to the powers that be. Over the years they have created Clinical Case definitions for FMS and ME/CFS, an invaluable resource for physicians. Presently they are busy organizing an International conference on ME/CFS and FMS that will take place in Ottawa in September, 2011. check out their website , www.mefmaction.net for more details. There will be a day set aside for people with the conditions.

To all those out there and I know there are many, we are more than aware of ME/CFS and FMS and their impact on our lives every day of the year. May 12th Awareness Day puts it out there for everyone else.

Material from Hansard, Session 39:2 – May 12 2010

MORNING INTRODUCTIONS:

Hon. Kathleen O. Wynne: I apologize for a slightly longer introduction, and they're long medical terms.

I'd like to welcome my constituents Maureen MacQuarrie, Eleanor Johnston and Alison Rae who are here today with the Myalgic Encephalomyelitis Association of Ontario and the Environmental Health Association of Ontario for International Awareness Day for myalgic encephalomyelitis chronic fatigue syndrome, fibromyalgia and multiple chemical sensitivities.

I'd also like to welcome representatives from nine different groups who provide support for those living with these conditions. The groups here today are: the Waterloo-Wellington ME Association; the Scarborough ME, FM and MCS support group; the Toronto, north Toronto, Mississauga and Brampton fibromyalgia support groups; the ME/FM Association of Peterborough and District; and the Vaughan and the York region Fibromyalgia/CFS Wellness Support Group. Welcome to Queen's Park.

Mr. John O'Toole: I'd like to acknowledge three of my constituents: Judy Derrett, who is from my riding of Durham. She's here with the chronic fatigue syndrome group, as well as Chrissy from Whitby and Lynn from Pickering.

Hon. Linda Jeffrey: I'd like to welcome a member of the fibromyalgia association of Brampton visiting the Legislature today. Her name is Joanne Saraiva.

AFTERNOON INTRODUCTIONS:

Mr. Joe Dickson: Please join me in welcoming Jeanne Samonas, president of Myalgic Encephalomyelitis Association of Ontario, and volunteers from a number of support groups from across Ontario who are here with her today. Welcome.

RIBBON STATEMENT:

Mr. Joe Dickson: Prior to my statement, I would appreciate requesting unanimous consent, Mr. Speaker. Today is International Awareness Day for Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivities. The ribbons being distributed to all members have three colours and represent awareness of each illness: blue for myalgic encephalomyelitis, purple for fibromyalgia and green for multiple chemical sensitivities. I would like to ask for unanimous consent that all members be allowed to wear the ribbons that represent these conditions.

The Speaker (Hon. Steve Peters): Agreed? Agreed.

MEMBER’S STATEMENT

Mr. Joe Dickson: Today is May 12, the International Awareness Day for Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivities. These illnesses have many overlapping symptoms, including neurological and cognitive problems, muscle and joint pain, and overwhelming fatigue. These illnesses are all debilitating, multi-system physical illnesses that affect individuals of all ages, youth and children included.

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According to the Canadian Community Health Survey, over a million Canadians have been diagnosed with one or more of these conditions, and 440,000 of these people live in Ontario. These are real people with real illnesses, and they need our help and support. More research is needed into the causes and treatments. No treatment or research centre exists yet in Ontario.

The Myalgic Encephalomyelitis Association of Ontario is hosting an awareness event outside Queen's Park today to put a real face on those people who live with these life-changing illnesses. It takes courage every day to live knowing that there is no cure and no ongoing funding for treatment, research and education of our Ontario health care practitioners. Let's look at educating Ontario and making all Ontarians aware.

Please join me in applauding the efforts of many dedicated volunteers who do their best to provide education, information and support. We in this province can make a difference.

MYALGIC ENCEPHALOMYELITIS ASSOCIATION OF ONTARIO (MEAO)

TORONTO, ONTARIO

Many volunteers and many hours of hard work resulted in a successful May 12th Awareness Day. Our thanks go out to everyone that contributed to the success.

Here are some of the details from the day:

· Introductions were made in the morning and afternoon session of the Ontario Legislature. Several people were in the gallery. The blue t-shirts helped make the group stand out. See Hansard Transcript.

· At least 32 MPP’s received emails from individuals. Also, all 107 MPP’s received an invitation to the event and a follow up email with information on the 3 illnesses. As you can see from Hansard, MPP’s agreed to wear the tri-colour ribbons made for the event.

· Approximately 200 people attended the event in front of the Legislature. Here are some photos http://community.webshots.com/album/577658554aMWsQm

· The event MC was Jaan Meri, MEAO Board Member. Speakers were Dr Alison Bested, Dr Darryl Appleton, Hugh Scher-Lawyer, Lin Grist(www.ehaontario.ca) and Jeanne Samonas, President of MEAO.

What is Hansard?

Briefly, Hansard is the official, complete report of proceedings in a parliament or Legislature. It's named after Thomas Hansard, the publisher of the report of debates at the U.K. Parliament in the early 19th century. Two of the parliamentary rule books used across Canada provide the following general, official definitions. Each legislature or parliament, of course, has developed its own specific rules and practices governing editing style, deadlines for publication, and the like.

The Official Report is a full report, in the first person, of all speakers alike, a full report being defined as one "which, though not strictly verbatim, is substantially the verbatim report, with repetitions and redundancies omitted and with obvious mistakes corrected, but which on the other hand leaves out nothing that adds to the meaning of the speech or illustrates the argument."

PRINCE EDWARD ISLAND

“Cassandra” Prince Edward Island Contact

NATIONAL ME/FM ACTION NETWORK

I was successful in getting the Premier's Office to make a statement in the House this week. I provided some background information on the National ME/FM Action Network and referred them to the Network for more information on ME/CFS and FMS. The Premier’s Office is willing to declare May 12^th Awareness Day in Prince Edward Island and will pursue this further to make sure this happens next year.

I also plan to meet with the PEI Minister of Health and the PEI College of Physicans and Surgeons to request funding for at least one doctor to attend the International Conference the Network is hosting for the IACFS/ME research and clinical conference in Ottawa in September 2011. I will also request that a commitment be made for that physican upon his or her return to make a presentation on the conference to the College members so that they too can be brought up to date about the latest research.

UNITED STATES
Florida

Daniel Moricoli, Founder

ME-CFSCommunity.com

Dr Nancy Klimas spoke at the recent ME/CFS Awareness Day event at the University of Miami. Dr. Irma Rey, who recently joined the CFS Clinic at the university, was also on the program. Dr. Rey, who also is a university team physician, spoke on CFS & Exercise.

The final speaker on the program was William K. Scott, Ph.D. who is a member of Dr. Klimas' research team. His talk on CFS Genomics Research provided key insights into the research methodology as well the potential impact of it for each of us.