There’s alot going on right now; check out the different events in this ‘Events blog’.
Aviva ME/CFS!
Help Canada create a successful nationwide ME/CFS awareness event that other countries can emulate
The National ME/FM Action Network’s May 12th Awareness Day for ME/FM submission in the Aviva contest is on the edge of winning $10,000 with the possibility of winning as much as $100,000 more. All they need is for us to keeping voting through Oct 14th.
Their project is to blast Canada on International Awareness day with a campaign to open the countries eyes to the true cost of ME/CFS. It will also lay the foundation for a powerful network to advocate for research and change in the future. It’s a coordinated effort to educate an entire country. We’ve never seen anything like this.
“We will use the funds to hold events in as many communities across Canada as possible ….We’ll connect with every MP and provincial/territorial representative… and have May 12th proclaimed in cities nationwide. We’ll sport t-shirts, carry signs and have engaging speakers…..we’ll advertise in national and local papers, and, if funding permits, on TV and radio….we’ll target physicians, medical students and other health professionals with our letters and/or advertising. “
Who knows what seeds this effort could plant. Let’s help Canada create the template for a successful public awareness campaign on a country-wide scale.
Everybody – Canadians, Yanks, Brits, Germans, Japanese – everyone can vote….Simply click on this link, register and vote once a day for an ME/CFS enlightened Canada.
Your Brain for Science. An ME/CFS Research Project Wants You!
The University of Wisconsin’s study to uncover the roots of post-exertional malaise in chronic fatigue syndrome is going to see what happens to your brain after you exercise. Given my cognitive declines my guess this scan is going to show something significant.
If you’re female and want to help determine why exercise can be so, so damaging in ME/CFS, this study is recruiting now. The study takes place over 3 days. Participants will receive $225. (Meals and lodging are not included.)
Call this number (608) 262-2457 for more information.
Draw Your Pain – Caricature Contest
Make the invisible – visible. Many people with ME/CFS/FM look just fine on the outside but the inside is a different story. Celeste Cooper’s Caricature Contest is giving you a chance to make your pain visible in a black and white drawing contest. The winning drawing will be published in Celeste’s book. Find out more here.
Petition to Support ME/CFS Experts
ME/CFS experts came together to attempt to block the DHHS’s efforts to have an outside organization create a clinical case definition for chronic fatigue syndrome. Shortly after that the DHHS published the outlines of a contract which had been amended to account for some concerns. The CFIDS Association of America and Dr. Bateman endorsed the effort and others are still opposed.
This petition thanks 35 ME/CFS experts for getting together to support the Canadian Consensus Criteria and block the IOM contract. It will be sent to Secretary Sibelius.
Your Amazon.com Shopping for Made Easier
We definitely blew it with our tricky and user-unfriendly Amazon.com stores. We’ve learned, though; if you shop on Amazon.com please check out out our new search widgets that let you quickly search the entire Amazon.com catalog for the products you want. They’re efficient and easy to use.
U.S., Canadian and U.K. shoppers can find search boxes for their countries on the right sidebar on every page on the website.
Health Rising gets 4-10% of every purchase you make while using our them.
Simply search and then shop….:)
Cort, when I read the heading I thought maybe somebody wanted our brains after we die. My mom gave her body to science and I have signed up with the same organization, but I’d rather it go to the study of fibromyalgia or CFIDS. Do you know of anyone who is doing this? Seems like it could really help the research. Also, did you see 60 Minutes last night? There was a segment on people scamming the government with false disability claims. Fibromyalgia and CFIDS were mentioned. They didn’t actually say that the conditions weren’t real, but suggested that people were using this diagnosis to falsely get disability, which some probably are, but too bad they were mentioned in that context.
Re: Those who scam Disability using our diagnoses. This is the trouble when there are no accepted biomarkers yet. I heard a program on NPR about how Disability is the new welfare, the current way for unemployed or poor people to gain an income. A larger part of the story is the lack of enough jobs which pay enough for people to live on. Young people without an education geared for the marketplace and without a job history–what are they going to do? I expect more of them get a psychiatric diagnosis like Depression or an Anxiety Disorder or PTSD whether or not they have had these or if so, found them to be permanently disabling. But our conditions are also used, and we are going to suffer negative consequences due to public anger and even more medical scepticism.
Jeez, that’s all we need – that’s why we need objective biomarkers!
I don’t know of anyone who’s collecting brain tissue altho I think there would be many people who would love to provide it after they’re gone. I certainly would.
Cort,
I called the University of Wisconsin to get more information about the study. It is not too far from Chicago. It requires about 10 hours worth of time over a 3 day period. There are no accommodations for meals or lodging, you are own your own at your own expense! There is very little of the information that they gather that they are able to give to patients individually. It will be done on a group basis. While I know and believe in the value of research, it is a high price to pay to gain little or no insight into our own personal situations. I hope that they are able to get a patient population from their surrounding areas so that people do not have to travel. They also expect 25 minutes on a stationary bike. That would indeed be a high cost, can’t even imagine the damage that could do to an ME patient. We are damned if we do and damned if we don’t.
Thanks for checking it out Cheryl; it sounds like its something for the local population…I’ll include those facts in the write-up.
Why is the post exertional malaise study open only to women? why aren’t they studying men’s brains, too?
My guess is it’s because men’s and women’s brains are different (no surprise there :)) and it makes it simpler (and less expensive) to focus on one gender…
Thank you for including the petition to support our ME experts in this blog post, Cort. While it’s true the petition is gathering signatures for a thank you letter to be sent to each of the experts, please note that it will be sent to HHS afterwards. This sentence is highlighted in bold in the text of the petition: “The following thank you message will be sent to the signatories of the letter [and] sent to Secretary Sebelius once at the end after signatures have been collected.”
Thanks Liz. I added that to the blog.
Hi Cort, Just to clarify The petition is a simple thank you to show support to our ME/CFS experts for taking the leadership position that they have taken in the September 23 letter to Secretary Sebelius – reaching consensus on the CCC, calling HHS to adopt it, urging HHS to abandon the IOM but especially standing up for a better future for all ME/CFS patients. The thank you will be sent to all of those who signed the September 23 letter to Secretary Sebelius. Secretary Sebelius can be CCed but she is not the primary recipient.
Read more: (A)viva ME/CFS! Contest, Your Brain for Science, Making the Invisible Visible, the Definition Question – An Events Blog http://www.cortjohnson.org/blog/2013/10/07/aviva-mecfs-contests-cartoons-definitions-events-blog/
Hi Cort, Thanks for all you do.I appreciate it a lot. Do note that alot is not one word,it is two words!
I did it again! OMG….(the post didn’t go through my editor – who has repeatedly warned me about this…:)) Thanks
The new Amazon link works like a charm!
Hi Cort
First , a most sincere thanks for putting Canada on the map! This is were I live and I as many others of my fellow canadians truly appreciate being backed up by you right now.
Second I’ll take a chance and ask you what are your thoughts on the fact that there are no longer 35 but 34 signatories to support… Why would one of the top signatories of this powerful and unambiguous letter suddenly switch to the other side?
I seldom drop responses, however after reading a bunch of comments
here (A)viva ME/CFS! Contest, Your Brain for Science, Making the Invisible Visible, the Definition Question – An Events Blog – Health Rising.
I do have 2 questions for you if you tend not to mind.
Could it be just me or do a few of the responses look
like they are written by brain dead folks? 😛 And, if you are writing on other
social sites, I’d like to keep up with you. Could you make a list of the complete urls
of your social sites like your Facebook page, twitter feed, or linkedin profile?
Hi London accountants – you can find the social networking sites on the right upper sidebar. Please connect with us there. Thanks for asking!