FW: Alberta Action for ME/CFS, MCS, FMS, Lyme
Linda J. MacDonald
Hello ME-CFS, FMS, MCS, Lyme advocates
This is for Albertans only – submit gov’t input relevant to social policy and healthcare for these illnesses.
Please fwd to your Albertan contacts. This action is supported by Ellie Stein.
My original submission is at
http://socialpolicy.alberta.ca/Content/Effect_exclusion_complex_neuroimmune_illness_social_policy_AB
For more info see email below; templates attached. First deadline Sept 30th but there are several rounds of consultations after that.
Please cc me if you submit something. Original letters and impact statements also welcome.
Contact me for the longer templates referred to below.
Need responses from all over AB so please fwd or post a template on your Facebook page for me.
Thanks so much,
Linda MacDonald
Alberta Action …
From: Linda J.
MacDonald [mailto:ljm...@telusplanet.net]
Sent: Saturday, September 15, 2012
4:02 PM
To: 'Linda J. MacDonald'
Subject: Alberta Action for ME/CFS chronic fatigue
syndrome, etc
Dear friends
You are getting this email because you have pledged to contact the gov’t on behalf of Albertans with: ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), fibromyalgia, multiple chemical sensitivities and chronic Lyme disease. As you know, I have struggled with these illnesses myself x 20+ years. Thank you for your help.
Forgive any repeat sends.
Background
The government is asking for public input regarding Social Policy (Human Services Ministry), Health and Finance. Deadline for Social Policy input is Sept 30. The Health and Finance public consultations are just beginning, deadlines TBA. You can submit under Social Policy online and it will get to the other ministries as well. There is a wiki at www.socialpolicy.alberta.ca or you can ask your MLA to submit your letter for you so the public will see it.
Goals of this Action
1. Finally get these 4 badly underserved neuro-immune illnesses on the provincial radar, all departments
2. Ask the government for funding for Alberta Dr. Ellie Stein's ME/CFS patient education initiatives – this is an immediate goal to build capacity. The mid and long-range goals are specific clinics, physician training, clinical trials and social support services equivalent to what we see for cancer, heart, arthritis, etc.
3. Maximize public response. Pass these materials to friends/family and ask them to make a submission on behalf of a sick loved one.
Templates to use as you wish (or not):
- Shortest template: Response to ministerial requests… (= half a page)
- Next shortest: Patient template (one page)
- Ministry-specific templates are designed to give details. Longer submissions are also welcome.
Please cc your MLA. Your MLA contact info is at:
http://www.assembly.ab.ca/net/index.aspx?p=mla_home
My original submission is at
http://socialpolicy.alberta.ca/Content/Effect_exclusion_complex_neuroimmune_illness_social_policy_AB
There are links to relevant references at the end of my submission, including the stats from two Canadian Community Health Surveys (CCHS), which compare the status of 23 chronic illnesses with respect to the internationally recognized social determinants of health. There the unmet needs of these illnesses become very clear.
Personal Impact
It would be good if you could make statements about what you have seen happen to family or friends who have the illness – how it affects them and their loved ones; not being able to get medical help, diagnosis, disability pensions, and being unable to work and left out of society for decades, for instance.
If you have already submitted something, thank you very much. Please cc me or fwd me your submission. I am going to be keeping track and tally for longer term follow-up and to watch for gov’t accountability.
By the way we need more responders in Southern AB including Calgary – can you please fwd to friends?
Big Thank you – we can make this happen!
Linda
Karen Lambert
Hi Linda,
Do you have their email addresses (not just drop down boxes)?
I am in the USA, but I'd be happy to email/snail all the UK reps too.
I have plastered the USA Senate & Representatives a few times (primary, secondary, trinary offices). I even got the White House to open an investigation.
Additionally many people worldwide have signed my petition against Allied NATO Government.
My petition is here: http://www.change.org/petitions/hiv-negative-aids
--- On Sat, 9/15/12, Linda J. MacDonald <ljm...@telusplanet.net> wrote: |
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