On the eve of May 12th, this is what's going on in Canada.

For the uninitiated, May 12th is ME Advocacy day. Just like Christopher Columbus has his own day. May 12th is Florence Nightingale's birthday. She got sick with ME and had to give up nursing.

This year will mark the 20th anniversary of May 12th ME Advocacy day. A year to notice certainly. But who will notice can be left to anyone's imagination. Chances are, the ones that patients want to notice won't give even a first look.

Just yesterday, our health minister Leona Aglukkaq announced a 100 million $ funding for brain research. You can view the press release here.

"One in three Canadians will face a neurological disorder, injury, or psychiatric disease, at some point in their lives," said Minister Aglukkaq. "This investment will strengthen Canada's position as a world leader in research in the identification and treatment of brain disorders."

Common brain disorders include: depression, Alzheimer's disease, Multiple Sclerosis, autism, brain tumours, traumatic brain injury, chronic pain, schizophrenia, addictions, post-traumatic stress, Parkinson's and epilepsy.

They just could not mention 1.1 millions of citizens who are affected with M.E., fibromyalgia or both. The 18oo signature petition that I have been working on has done nothing for the health minister, it seems that we are still seen as tired people who are increasingly complaining of not getting enough attention.

But the news don't just stop there. The ontarian rheumatologists have been hard at work, they have been voting on whether fibromyalgia should get kicked out of their medical specialty or not. I will copy the brief article from Margaret Parlor (director at ME/FM Action) who posted this on Facebook:

Dear Friends

This week, a study was released in the Journal of Clinical Rheumatology entitled "Should rheumatologists retain ownership of fibromyalgia?  A survey of Ontario rheumatologists". 

As background, the American College of Rheumatology developed a definition of fibromyalgia in 1990, bringing fibromyalgia into the rheumatology orbit.  However, there is a debate underway within the rheumatology community about whether fibromyalgia really belongs under rheumatology.  A comment was published in the Journal of Rheumatology in 2009 which stated:

"The time is ripe for rheumatologists to consider abrogating care of these patients for these reasons: the pathogenesis of FM is now firmly centered in the nervous system, and FM is not a musculoskeletal complaint. Optimal patient management requires attention to the many symptom components of FM in addition to pain management. Patients with FM will also require prolonged care with continued tailoring of treatments, as symptoms are likely to change over time. Finally, as 2% to 4% of the population suffers from FM, it would be unrealistic to require that all or most of these patients be evaluated or followed by rheumatologists."

In the current study, the authors invited all 150 rheumatologists in Ontario to participate in an on-line survey.  Eighty of them did so.  Of those responding, 71% said that rheumatologists should not retain ownership of fibromyalgia, while 89% said that the family physician should be the main care provider for these patients.  Though we are not sure what the seventy rheumatologists who did not respond would have said, the findings suggest that there is a reasonable level of support among rheumatologists for withdrawing from the fibromyalgia area.  And if these are the feelings of Ontario rheumatologists, these are very possibly the feelings of rheumatologists in other province and states as well. 

These survey findings are not a particular surprise.  We already recognized the ambivalence within the system.  In many ways, we welcome the fact that the issues are now on the table. However, this also means that we could be entering a critical time of change in the health care system for fibromyalgia patients.  The Canadian Community Health Survey made it clear that Fibromyalgia patients already have a high level of unmet needs.  We certainly do not want to see existing services withdrawn without new services to replace them.  There is a need to address  the concerns of the rheumatologists, but any dialogue must first and foremost address the concerns of patients. 

Abstract of current study: 

http://www.ncbi.nlm.nih.gov/pubmed/22547393

For full article, follow the link

in upper right corner, 34.95$US. 

Comment from Journal of Rheumatology: 

http://jrheum.org/content/36/4/667.full

Margaret Parlor

President

National ME/FM Action Network

www.mefmaction.com

So take this. The GP's can apparently do an as good job as we do. There are too many of them patients for rheumys to be encumbered with them. 

This is bad news because having a home under a medical specialty means that there is research happening. Who have seen GP's perform medical research, or clinical trials? They can't be bothered. We have a terrible penury of GP's in Canada. They barely have time to see you 10 minutes, let alone dealing with the complex difficulties of a patient with fibro or ME. Patients know more than GP do when it comes to these illnesses. 

This, for Rheumatologist, is finding a convenient way to get rid of an entire illness. As for ME, I have asked around, at the Canadian Association of Rheumatology and also the Arthritis Society why ME was not accepted by rheumatologists as a disease they treated. I told them that the norwegians felt it was an auto-immune disease especially that we seem to respond rather well to Rituximab. I got crickets. Zip. Nada. No answer. 

Not only these 2 pieces of news are disappointing, they are scary. We patients with invisible disease such as Fibro and ME have no respect, and basically nowhere to turn to in Canada. I got someone highly placed in Canada's health agency told me (I got the email) to go to pain clinic. That was the most insulting answer I ever got after giving him the ME-ICC paper, the Norwegian Rituximab study paper, David Tuller's piece on the CDC and my 4 pages advocacy letter. The pain clinic... who will told me to relax, send me for CBT, GET and maybe even give me pain pills to shut me off. Errrr no... This is not the way I'm gonna go. 

What is there to do? 

This is time to make noise people. Be loud, be heard. Sign a petition. This one, and this one. Better yet, start a new petition, this one pen and paper, and ask your MLA to read it in parliament. 

Write. Send a letter to your MLA, provincial medical association, provincial health care, federal health agencies. There are 1.1 millions of us. That's a lot of voices. 

Protest. Engage the media, written, spoken and television. Tell them about the health care you've received so far and how bad it's bound to get. Tell them about the neglect, the stigma and discrimination you encounter. Tell them about how bad your governments- and physicians have let you down. 

Join and support your local, provincial and national ME and fibro organizations. We have to be united. We have to act. 

X-treme ignorance

in the past 2weeks, I heard 2 different stories of women that got denied health care even though they knew something was wrong.

The first one had a lump in her breast. she told the doctor who dismissed that as being part of fibromyalgia. It was cancer.

The second one is a long time patient with fibromyalgia also, Who had severe pain after a fall, was returned home with no treatment. 3 years later, after continuous suffering, she committed suiicide. her post mortem examination demonstrated that she had a pelvis fracture.

http://niceguidelines.blogspot.com/2011/07/post-mortem-shows-fractured-pelvis-yet.html

These stories show the horror of discrimination that us patients with invisible diseases go through day in day out. ME/CFS, Lyme disease and fibromyalgia are horrible, often lifelong diagnosis where it seems like many physicians are given the opportunity to think that any symptoms these patients report are fake, unreal, imaginary, and benign.

If you are a physician, a health care professional, or working with a few million dollars of health care budget, please remember that this patent could be your mother, your daughter, your brother, or your spouse. Also please remember that only a very small minority of patients invent symptoms in order to attract attention. All of us patients would rather live the only life we've been given by doing what we love dooing and not being in pain, in bed.

Nuff said.

Xtraordinary

Globe and Mail article

It is 2 Am and I am sitting at my desktop, in a daze. I almost fell off my bed when I read the news. It felt unreal. Now all of a sudden, we are legit? We are not malingerers anymore? We don't have to avoid doctors, or worse, speak really loud because we don't feel heard (or perhaps we thought they were deaf)?
The British Columbia minister of health has announced a 2 millions $ funding for chronic diseases such as Lyme, ME/CFS and fibromyalgia. 2 millions dollars is just about half of the yearly budget of the CDC CFS program that has been investigating false illness beliefs and sexual abuse as a child in CFS patients. 

The Globe and Mail calls these diseases "rare".  Rare? Well the BC government thinks there was only 30 cases of Lyme disease in British Columbia. However they are wrong since physicians have steered clear of diagnosing and reporting Lyme disease, and let's say that the canadian blood test is not sensitive at all.

We all know that fibromyalgia is not rare at all, the last number I saw was 340 000 in Canada. Everyone knows someone with this mysterious disease. But no one has paid attention.

The latest numbers for ME/CFS in Canada was 330 000. For British Columbia, apparently 28 000 people reported having the disease. Rare disease you said? Well we certainly won't rely on the government to count the cases of Lyme disease... It could be embarrassing.

The great news is a new clinic is coming, with a study, apparently. They even said they suspect infectious disease involved. You're telling me. They didn't mention XMRV, but I think they are thinking of breaking the news slowly, so they don't shock the citizens. Who knows, them citizens could get scared.

My thoughts are, what kind of clinic, what kind of studies are they planing? Could they please don't get in the habit of calling it chronic fatigue? Could they please not read anything from the UK, especially papers, or anything that has Wellcome Trust on it? Could they please phone Judy Mikovits tomorrow? She is expecting their call? Could they please collaborate with the Li- Ka Shing Institute of Virology in Alberta? Can they please leave the psychiatrist well away from us? Can they include patients in the decision making, to ensure that the best health care possible can be provided?  And my personal opinon, leave alternative medicine behind, focus on science. Focus on evidence-based medecine.

The BC Cancer Agency model is very successful, in fact other countries come and visit here in Vancouver to copy the model. Essentially it is a provincial program with protocols for every types of cancer and accessible for everybody in the province.  Attached to the BC Cancer Agency is a separate building that offers alternatives for cancer patients. From diet to therapeutic touch, to supplements and everything in between. It is a pay for service, but patients that desire that kind of service are happy to pay and are treated just the way they want to be treated.

Since here in Canada we have socialized health care, I believe that the care that is paid by the system will  consist of medical doctors and real science. At least I hope.