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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Please sign this petition!

Kati

Kati

Patient in training
Messages
5,497
i am bumping this thread up with an update.

We are nearing 1450 signatures and at least a hundred of personal comments. I am pleased and thankful for each and every signature we have so far.
There is still time for you to participate if you haven't signed yet. You so not have to give your full address but city and postal code are sufficient.
You may choose to not have your name showing up on the list.
You do not have to be canadian to sign.
Share widely!

Thanks!
 
Kati

Kati

Patient in training
Messages
5,497
Hi K-2 for hope, each signture is a bonus for me. I do not expect to reach 5000 but it would be nice. It could still happen if each people who signed fanned it out to their contacts.

Thank you so much for signing.

Kati
 
Ember

Ember

Senior Member
Messages
2,115
Time to remove stigma

By David Mann, The Ottawa Citizen May 1, 2012

http://www.ottawacitizen.com/health/Time+remove+stigma/6544422/story.html

Re: Chronic pain a growing problem, health summit told, April 25. I strongly support this Citizen article's statements about the lack of options for treatment facing millions of Canadians living with daily and unrelenting chronic pain.

Fibromyalgia, chronic fatigue syndrome and myalgic encephalomyelitis - soft tissue chronic pain conditions - bring heavy pain burdens and additional problems like overwhelming fatigue, irritable bowel syndrome and cognitive and other functional impairments. This burden is overwhelming to many and can lead to a tremendous degradation in quality of life.

FM-CFS Canada provides help by encouraging self-management, and physician, patient and caregiver awareness. We have developed multimedia guides that can be used freely by the public and health community (see www.fm-cfs.ca).

In Canada, virtually no research is being conducted into the etiology or potential outcomes related to these illnesses. The annual cost to the Canadian health system (of pre-diagnostic testing alone) is estimated to be in the billions. As there is no cure, and no recognized treatment, people with these conditions face many obstacles: years to diagnosis that are often marked with loneliness, social isolation and disbelief from family, friends and, yes, the medical community.

It is time to remove these stigmas, acknowledge the problems, and make care and research a priority.

David Mann, Ottawa President, FM-CFS Canada
Click to expand...
 
elbosque

elbosque

Messages
53
I am doing a push on the petition with friends and family as well as spamming my Facebook with articles on FM, ME / CFS. Also posted it on Dr Hyam's Facebook page. But now noticed that someone else had already done it. I still don't understand why there are so few signatures with so many people impacted by this illness???
 
Kati

Kati

Patient in training
Messages
5,497
elbosque, i a totally happy for each and everyone who hae signed this petition. It is making noise around and the silence from Mrs Aglukkaq and Health Canada is deafening.

Add that with advocacy demonstration in Ottawa later this week, an advocacy letter I have sent along with a few paper midFebruary, social media advocacy aimed at canadian politicians, the heath minister, the canadian doctors, and I have just been interviewed for a canadian radio show called DisRespect, promoted the petition, things are happening.

The change may not happen tomorrow, but I believe we are making strides. We need to be consistent and keep on asking questions- for instance why is ME not mention in their 100 million $ Brain research fund announcement?

Please introduce yourself to your MLA. tell him/her what's important to you, and why. Tell them about the burden to the government and how neglected this disease is- and how this could bea mtter of human rights.

And yes, I will take more signtures, please!!! But most importantly, thank you.
 
peggy-sue

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
We're a one pc couple - (and it runs on steam. )
We have not progressed to laptops or mobile phoney things.

I tried clicking on the "outside the US" button after I'd entered my info, and all my info vanished.
So I tried it the other way round, but it wouldn't let me put my info in.

I'm even already signed up to change.org - have been for years!
 
elbosque

elbosque

Messages
53
I've just done another Facebook push on this Kati proceeded by posting the stories of the deaths of Emily Collingridge and Patrick Kelly in the US. Too many people just think ME/CFS is you are just a bit more tired. I don't know how many times people have told me that they feel tired too. It makes it even more aggravating that many doctors don't have a clue about ME/CFS.

If people want to post the same stories I used to wake up your firends and family on Facebook, here are the links. I think it is what these two victims of ME/CFS would hope for us to do.

http://www.guardian.co.uk/commentis...-fatigue-syndrome?fb=native&CMP=FBCNETTXT9038

http://phoenixrising.me/archives/9932
 
Kati

Kati

Patient in training
Messages
5,497
Thank you Elbosque. I really appreciate that. We are very invisible in Canada, and rare are the opportunities to be heard as patients. Every little effort counts in changing people's perception of our illness.

Today in the House of Commons (Canada), a MP who also happens to be a MD spoke about ME Awareness day. She had only 1 minute to do so, and it was not perfect, but it was something. (Still I hate to be mentioned in the same sentence as "chronic tiredness")

We need everyone to get onto social media, beyond our closed groups- and participate in general discussions- and how it applies to our illness. A good example of this is Twitter with Tweet Chats, and ReTweeting others' tweets. Facebook government groups are also a great example. Tell the CDC, HHS, Health Canada, etc how neglected our disease is- when given the opportunity.

That's my take.
 
elbosque

elbosque

Messages
53
People might try adding a link to a short video that clearly and quickly explains what is ME/CFS. This video done by ME/CFS suffers is excellent for that.

 
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