The surge of the internet has changed the way we interact with people. It cannot be more true for patients with ME who more than often are housebound and bedbound. Devices that are bed friendly provide an even better access to our population.
Advocacy for ME can and should be done through internet. There are many ways to get involved, through Twitter and Facebook, which are 2 good examples on how to reach out.
There are quite a few tweet chats on health care topics. Join in the fun! Talk with others who are not ME related and make new contacts, and let them know about your illness. You can see the schedule and how it all works over here and you can use the tweet chat application to participate. The chats that I have joined have been #hcsm (health care social media) and #hcsmca, #meded #MDchat #rheum and #s4pm (society for participatory medicine).
But today I want to focus on one particular chat I have had on Facebook with Toronto MP Carolyn Bennett who also happens to be a MD. In May, she spoke for 1 minute about ME/CFS at the House of Commons of Canada, urging for action for this disease. You can hear the speech here (no image, just sound)
So on Facebook, the conversation went like this:
There is a true opportunities for us the patients to engage with the politicians. Talk to your MP!!! I will discuss the matter with some key people and will get started with some action.
But first, thank you to Carolyn Bennett for knowing that ME has been neglected and that it's about time we get some decent research going.
Advocacy for ME can and should be done through internet. There are many ways to get involved, through Twitter and Facebook, which are 2 good examples on how to reach out.
There are quite a few tweet chats on health care topics. Join in the fun! Talk with others who are not ME related and make new contacts, and let them know about your illness. You can see the schedule and how it all works over here and you can use the tweet chat application to participate. The chats that I have joined have been #hcsm (health care social media) and #hcsmca, #meded #MDchat #rheum and #s4pm (society for participatory medicine).
But today I want to focus on one particular chat I have had on Facebook with Toronto MP Carolyn Bennett who also happens to be a MD. In May, she spoke for 1 minute about ME/CFS at the House of Commons of Canada, urging for action for this disease. You can hear the speech here (no image, just sound)
So on Facebook, the conversation went like this:
There is a true opportunities for us the patients to engage with the politicians. Talk to your MP!!! I will discuss the matter with some key people and will get started with some action.
But first, thank you to Carolyn Bennett for knowing that ME has been neglected and that it's about time we get some decent research going.
Kati Rituximabtourist sorry for self promotion here but my blog discusses the neglect and stigma towards patients with myalgic encephalomyelitis. I am one of them, previously a chemo nurse, currently getting out of country Rituximab http://bikechick06.blogspot.ca/ There are 411 500 patients with ME in Canada, according to 2010 community health survey, 24% more than in 2005 and LEona Aglukkaq is doing nothing about it, funding for research is 0$- So I speak up.
5 hours ago · ·
Kati Rituximabtourist These days, you are a hero and survivor if you have cancer. If you have ME, you are a second class citizen.
Kati Rituximabtourist I appreciate you, Carolyn Bennett, speaking in the House of Common at the end of May, but we need so much more work! Stigma and discrimination is what it is. And I know the health care system!
Mary Penner Interesting Kati, I'm workiing to shatter the stigmas surrounding ostomy surgery - we lost a tremendous young girl, one of my Ostomy Toronto members on Friday, she was an amazing ostomy ambassador and one of the kids we sponsored to go to ostomy camp just 3 weeks ago
Bernice Graham my problem is not as serious as those already mentioned but still an example of the lack of concern Harper has for ordinary citizens
Kati Rituximabtourist Patients with myalgic encephalomyelitis have no specialists. Rheumatologists, which you'd think would be the most appropriate speciality, will do everything to wiggle themselves out of our care. Health Canada funds AIDS research (70 000 patients) cancer, rheumatoid arthritis. ME is always last in terms of priority. People think we're tired lazy overweight bunch- my illness started with mono. Not only I didn't recover, my health all went downhill from there. From accomplished bicycle tourist to someone who cannot walk to my car. Multiply that by 411 500 patients, cost to society is up high.
Kati Rituximabtourist thank you @Mary Penner I had and still have to expose all the details of my health care, and speak up on behalf of so many who are housebound and bedbound.
Carolyn Bennett thanx .. Kati.... I agree ME/CFS is truly misunderstood.... the costs are huge ... we nd much better research....
5 hours ago · · 1
Kati Rituximabtourist Thank you Carolyn Bennett, I appreciate your compassion. I have written a letter to Leona Aglukkaq earlier this year, have started an online petitionhttp://www.change.org/petitions/ minister-of-health-of-canad a-fund-research-for-patien ts-with-myalgic-encephalom yelitis, have shared tweets about our illness with her on twitter but she has blocked me off twitter. In the meantime, she announced 25 millions (or is that 50?) for aboriginal health, promises to fund Ebola, and attended an AIDS conference in Washington, but couldn't walk across the street in Ottawa last fall for the international ME/CFS conference. Just saying. I hope I don't come too agressive. I am seeking out every avenue, trying to fight for us, we are truly neglected. I am thankful that I can get health care in San FRancisco but there should be no need for me to do that. We are supposed to have the best health care system.
5 hours ago · · 1 ·
Bernice Graham Carolyn, do you have any suggestions of what more I can do about the CC for HOC? I am stuck
Mary Penner Ty Carolyn, we are devestated, her mom found her unresponsive Thursday, brain dead.http://uncoverostomy.org/2012/07/27/ a-future-shattered/ I was Ostomy Toronto president when we met a year ago at your Canada day picnic, I'm not anymore but I'm a director of the United Ostomy Association of Canada and we are working so hard on public awareness, but we can't get any media attention - all you hear about ostomies is negative - even my blog on Alison's death on Friday, google put ads for seniors care on it because it said ostomy. We are hosting the national conference here in 3 weeks.
Bernice Graham I have been writing everyone about the lack of captioning for all proceedings of the HOC. Cons don't even respond to emails James Moore just shoved me somewhere else 3 months after the original email too hm
Carolyn Bennett Bernice.... we need the Board of Internal Economy to deal with this ..... The Speaker doesn't get it... you need as many people as possible to write to the whips of all parties....
Mary Penner It's here in Toronto at the Delta Chelsea. We will be voting on a strategic plan that will change our name to Ostomy Canada Society - we'll have new mission statement and vision - "Canada's VOICE for people with an ostomy."
Kati Rituximabtourist Pardon my hysteria, but see what I mean, Carolyn?!? Truly, people feel compelled to help everyone else but a group of sick patients with ME.
4 hours ago · Edited ·
Mary Penner Our conference chair is the past president to me for Ostomy Toronto, she'd know how you could help, Di Bracken, dib@ostomytoronto.com
4 hours ago · · 1
Mary Penner We are trying to do a public awareness campaign around "coming out of the bathroom." We have a 19 year old girl who climbed to Everest base camp and has had an ostomy since 9 receiving the Great Comebacks National Ambassador award on August 17
4 hours ago · · 1
Mary Penner We will celebrate world ostomy day in Toronto September 29 with a theme of "Let's Be Heard." Unfortunately with conference coming up I don't think they've planned anything yet - I had plans I wanted to do but I lost the election for president.
Carolyn Bennett Kati, I think lots do.... it's just that there is so much misunderstanding.... the reason we need waaaaay more research.....
Mary Penner Kati, it's so tough. I'm working on inequity in ostomy supply funding across Canada - we can't get anywhere. You need someone to champion your cause, and that's difficult to find. Other health issues get all the attention and the funding, rightly or wrongly.
Kati Rituximabtourist MY question to you Carolyn Bennett, is what more can I do? MY own MP JAmes Moore is not answering me, Leona has blocked me and not answering my concerns. I am reaching out for many tonight. Some of my fellow patients have been bedridden for decades.
Carolyn Bennett Bernice.... my office will give you the email addresses for the whips.... bennec@parl.gc.ca
Bernice Graham Thank you, I was thinking that I maybe would write to the members of the IEX as well?
Carolyn Bennett Kati... wd be great if you cd get your network to try and meet with their MP's in their ridings before Parlt resumes..... then we shd try and organize a brkfst with MP's in the Falll with one of the experts and some patients
4 hours ago · · 3
Bernice Graham That sounds like a great idea for Kati.... lol my MP's staffer suggested I learn French Sign Language if I wanted access to HOC
4 hours ago · · 1
Kati Rituximabtourist Well my MP James Moore will be pleased with me I will ask for meeting in french! If all of you want to help, could you please sign my petition in solidarity? the link is towards the begining of the chat with the blue picture. Takes 2 minutes.
Carolyn Bennett Well I need to go a rewrite a chapter of a book on leadership !!! Talk next MONDAY .... in the summer on long wknds we chat on Mondays !!!
4 hours ago · · 2
Mary Penner Night all. Ty for the talk - gl Kati and Bernice. Must get some sleep, I have 2 days work then I'm off for day surgery/sick leave/vacation. Will ask Di or our new national president to send you some info Carolyn - there is info on both their website - http://www.ostomycanada.ca/events/ biennial_conference_of_uoac and Ostomy Toronto's website - http:// www.ostomytoronto.com/
ME/CFS is allready known about in the US and UK
ReplyDeleteIn the uk their is research been done but it has been made a "State Secret" and cannot be opened until 2072.
See link
http://forums.phoenixrising.me/index.php?threads/cause-of-me-a-state-secret-in-uk.1344/page-4
Also there has been a rise of children getting
ME/CFS which is very distressing.