Saturday, May 5, 2012

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:
For full article, follow the link
in upper right corner, 34.95$US. 
Comment from Journal of Rheumatology:

Margaret Parlor
National ME/FM Action Network

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. 

1 comment:

  1. Kati, I know it is discouraging. However, look over the long-term and see we are making progress. But, we will have setbacks. And the fact that FM and ME/CFS was not mentioned as neurological disease needing research must be very disheartening, considering your efforts.

    Now, for the other, I have had rheumotologists here in my city tell me they don't treat FM or CFS. I have said that we belong to everyone, but no one wants us but the psychiatrists. (And some of them know they can't help us and don't want us.) Neurologists don't want us. And I agree, GPs are not going to keep up with the research to know what is best for us. It's too complex for that setting. I say we need a new specialty. Call it NEI doctor. All we have to do is get it taught in the universities. (That's all we have to do, LOL)