Eight Days of May Project: Countdown to International Awareness Day

[Cort]

Eight Actions to take to increase awareness for ME/CFS as we count down to May 12th.

#1 (May 4th): Sign the Change.org Petition to increase funding for ME/CFS.

Mary Gelpi's petition on Change.org has gathered an amazing 29,000 signatures. I can't remember any petition effort that has come close to that figure. The petition will be presented to NIH Director Francis Collins. Find the petition here.

Bonus Action:

Read Jorgen Jelstad's blog on the chronic underfunding of ME/CFS - The Male Pattern Baldness Disease? Chronic Fatigue Syndrome's Chronic Lack of Research Funding

___________________

From the Petition:

Before I became sick, I was able to travel in college, fall in love, enjoy SEC football and graduate. Now, just a trip to the grocery store can land me in bed for days. I take 25 pills a day just to manage the pain and symptoms of the illness.

[bimg=fright|no-lightbox]https://d22r54gnmuhwmk.cloudfront.net/photos/9/ta/zv/YxtAzVleVvdhHUz-800x450-noPad.jpg?1459541012[/bimg]I am respectfully asking the NIH to officially fulfill the promises they have made regarding ME/CFS, and to drastically up the funding allocated for research so we can finally find a cure, and at least possible treatment options in the meantime.

I started this petition because people suffering from ME/CFS just want our lives back, and that will only happen with an effective treatment and eventual cure. With your signature, we can hold the NIH and congress accountable for taking our illness seriously and honoring our request to increase the NIH research budget to $100 million for ME/CFS funding.

 

[Cort]

Day II of the Increase ME/CFS Awareness and Support Project

# II - Join the MEAction Network

[fright]

[/fright]The ME Action Network is the funnel through which many advocacy actions are taking place. You can create petitions, join up with groups to take actions, learn about advocacy and events and more.

Join the ME Action Network here.

 

[EmpathAnonymous]

Hello, First Post ever. Thank you Cort and everyone for this space.
Upon hearing about May 12th, I was impassioned to share my less than exceptional CFS/ME story. It's hard to write with so much fog and so little focus and a tight word limit... So, this is the best I could do. My top priority is to have someone start a local support group. The invisibility factor is perhaps the hardest element of having CFS/ME and feeling heard is a rare experience. Sharing the post at the link below - my grassroots effort for the larger goal.

http://www.theunion.com/entertainment/21853808-113/may-12-national-invisible-illness-day-in-nevada

 

[Cort]

Hello, First Post ever. Thank you Cort and everyone for this space.
Upon hearing about May 12th, I was impassioned to share my less than exceptional CFS/ME story. It's hard to write with so much fog and so little focus and a tight word limit... So, this is the best I could do. My top priority is to have someone start a local support group. The invisibility factor is perhaps the hardest element of having CFS/ME and feeling heard is a rare experience. Sharing the post at the link below - my grassroots effort for the larger goal.

http://www.theunion.com/entertainment/21853808-113/may-12-national-invisible-illness-day-in-nevada

You did a great job. How did you manage to get it in there? Congratulations on a very nicely done story!

 

[Cort]

Day III - of the Increase ME/CFS Awareness and Support Project

Action #III: Join the Solve ME/CFS Initiative's Biobank / Patient Registry

[fright]

[/fright]The SCMI's Biobank and Patient Registry makes research easier and more affordable and has even brought new researchers into the field.

Getting patients and their samples for a study is one of the most time-consuming and expensive parts of a study but the SCMI's Biobank/Registry makes that job a piece of cake. Their ability to provide researchers with the samples they need has brought several new researchers into the field.

Plus, they just got a grant to expand their program.

If you haven't please click here to enroll in the program.

 

[Cort]

Day IV - of the Increase ME/CFS Awareness and Support Project

Fourth Action: Watch the Llewelyn King - Mary Dimmock You Tube Interview

Mary Dimmock retired early several years ago from a pharmaceutical company to care for her severely ill son. Since then she's immersed herself in the history and politics of ME/CFS and has produced the first comprehensive history of it.

Bonus Action : Download Mary Dimmock's Book "Thirty Years of Disdain: How the HHS Buried M.E." (free download)

Put together over several years "Thirty Years of Disdain" is a comprehensive history of M.E. or ME/CFS in the United States. "Osler's Web" took us so far, "Thirty Years of Disdain" takes us the rest of the way.

From Mary:

"for the last thirty years, political agendas, institutional neglect, and bad science have buried ME under a vague condition of "fatigue," often associated with mental illness. The most widely accepted treatments have been cognitive behavioral therapy and graded exercise, used to convince patients they are not really sick, just deconditioned. Medical care is abysmal and too often results in physical harm. ME patients have been so neglected, disbelieved, and stigmatized that some have lost hope and committed suicide.

Thirty Years of Disdain examines the forces and factors that have denied the reality of ME and resulted in such a misguided national and international response. It examines how that misguided response has impacted research and drug development, degraded clinical care, and stigmatized and harmed ME patients. It shines a light on the magnitude of systemic change that is needed to correct this medical travesty and give ME patients hope in the future.

Check out the short version (64 pages plus references) and the longer version (150+ pages plus references)

 

[Cort]

Day V - of the Increase ME/CFS Awareness and Support Project

Action V - Get Inspired by the SMCI's IOM Briefing

Check out and share one of the most powerful calls for more funding ever. Watch Morgan Fairchild and Carol Head give stirring calls for more federal support for ME/CFS.

Bonus Action

Carol Head speaks about ME/CFS - or as she calls it M.E. - for her Stanford Business School Reunion

 

[Cort]

[fright]

[/fright]Day VI - of the Increase ME/CFS Awareness and Support Project

Action VI: Put Yourself on the ME/CFS and/or FM Disease Maps

Increase awareness for ME/CFS and/or FM by making yourself visible and putting yourself on the ME/CFS and/or FM disease maps on DiseaseMaps.org

• Chronic fatigue syndrome / M.E.
• Fibromyalgia

 

[Mark C]

Day II of the Increase ME/CFS Awareness and Support Project

# II - Join the MEAction Network

[fright]View attachment 1420 [/fright]The ME Action Network is the funnel through which many advocacy actions are taking place. You can create petitions, join up with groups to take actions, learn about advocacy and events and more.

Join the ME Action Network here.

MEACTION Needs to get added to diseasemaps.org under Chronic Fatigue syndrome /ME to people worldwide can advocate for funds and cures, and organize regionally for lobbying and legislation. Can put location US or Antarctic if you prefer since very International. Great organization need to be not missing either.

 

[Mark C]

[fright]View attachment 1453 [/fright]Day VI - of the Increase ME/CFS Awareness and Support Project

Action VI: Put Yourself on the ME/CFS and/or FM Disease Maps

Increase awareness for ME/CFS and/or FM by making yourself visible and putting yourself on the ME/CFS and/or FM disease maps on DiseaseMaps.org

• Chronic fatigue syndrome / M.E.
• Fibromyalgia

Thanks for promoting using the existing diseasemaps.org for making M.E. visible, but key organizations with fantastic information need to get listed also. Can Cort J add healthrising to organizations on diseasemaps.org, joining OMF, SolveCFS.org, others in UK, Australia, Netherland so would can work together, get to cures sooner, using your healthrising.org splendid info and other sites. Hope lobbying by MEACTION.NET can also get listed for advocacy. We had 1000 people listed a month ago, now almost 2000, with Corts help and had zero organization, now 8, but need two more ASAP! Trying to get Norway, Sweden etc added too since great R&D there, and great ME/CFS doctors, R&D centers should also consider listing, then will start getting more fund, training & hiring more MD's, find biomarkers, treatment Cure for M.E.

 

[Cort]

Thanks for promoting using the existing diseasemaps.org for making M.E. visible, but key organizations with fantastic information need to get listed also. Can Cort J add healthrising to organizations on diseasemaps.org, joining OMF, SolveCFS.org, others in UK, Australia, Netherland so would can work together, get to cures sooner, using your healthrising.org splendid info and other sites. Hope lobbying by MEACTION.NET can also get listed for advocacy. We had 1000 people listed a month ago, now almost 2000, with Corts help and had zero organization, now 8, but need two more ASAP! Trying to get Norway, Sweden etc added too since great R&D there, and great ME/CFS doctors, R&D centers should also consider listing, then will start getting more fund, training & hiring more MD's, find biomarkers, treatment Cure for M.E.

Thanks Mark. I tried to add Health Rising but they wanted a different email address (official website email address) which I've forgotten but I will get that and get us in.

Thanks for your support!

 

[EmpathAnonymous]

You did a great job. How did you manage to get it in there? Congratulations on a very nicely done story!

Thank you Cort, your opinion means a lot. I've never written an article before but was inspired when I learned of May 12th in a CFS/ME group in March. I live in a small town and I thought, what the heck, It's a small local paper and why wouldn't this be appropriate? I found a newspaper contact online and asked for parameters: word limit, deadline etc. Got my mom to take the picture, purposely showing that I look fine... the point being that for those of us who aren't bed ridden, we DO look healthy. That's why it's invisible, and invisibility = lack of funding, educated doctors, available healthcare... of course there are politics too. I also put it on my Face Book which I've not had a presence and not shared about my illness. Everyone is welcome to use the link and share the article if it is helpful. I'm willing to come out of the closet as it doesn't appear I'll be able to work again.

I've been putting all my attention to getting disability for the last 3 years, so while I've read your blogs, I've not had the pleasure of joining in the group conversation. Thank you for the warm welcome.

My name shows as Empath Anonymous, right? You-all can call me EA if it's too much.

 

[Cort]

[fright]

[/fright]Day VII - of the Increase ME/CFS Awareness and Support Project

Action VII: Check out the NIH's List of Disease Funding

The NIH posts it's list of funding for all the diseases and conditions every year.

Go to this link zoom down to the C's and then to F's and get the scoop on how much funding the NIH gives to ME/CFS and FM and other conditions.

 

[Cort]

Thank you Cort, your opinion means a lot. I've never written an article before but was inspired when I learned of May 12th in a CFS/ME group in March. I live in a small town and I thought, what the heck, It's a small local paper and why wouldn't this be appropriate? I found a newspaper contact online and asked for parameters: word limit, deadline etc. Got my mom to take the picture, purposely showing that I look fine... the point being that for those of us who aren't bed ridden, we DO look healthy. That's why it's invisible, and invisibility = lack of funding, educated doctors, available healthcare... of course there are politics too. I also put it on my Face Book which I've not had a presence and not shared about my illness. Everyone is welcome to use the link and share the article if it is helpful. I'm willing to come out of the closet as it doesn't appear I'll be able to work again.

I've been putting all my attention to getting disability for the last 3 years, so while I've read your blogs, I've not had the pleasure of joining in the group conversation. Thank you for the warm welcome.

My name shows as Empath Anonymous, right? You-all can call me EA if it's too much.

Thanks Empath...It just shows how one person can make a difference. I imagine that a lot of us think there is no way our local newspaper is going to feature our story and we don't even try. Actually, though, I'll be newspapers LOVE human interest stories like that - and your entire area just learned about ME/CFS

 

[Cort]

Day VIII - of the Increase ME/CFS Awareness and Support Project

8th Action: Sign up for Jennie Spotila's OccupyCFS blog

[fright]

[/fright]Jennie Spotila was a lawyer before she got ill and a Board Member of the Solve ME/CFS Initiative (then the CAA) and patient representative to the FDA after she got ill. She has deeply immersed herself in the politics and infrastructural blocks facing ME/CFS at the federal level and she's an excellent writer.

Sign up for OcccupyCFS to keep abreast of the issues surrounding federal funding.

Bonus Action: Read Jennies latest superb blog - PACE-Gate - and get up to date where we are with the attempts to have the PACE study reconsidered or even retracted.

 

[Lissa]

HAPPY MAY 12th!

Gonna try to make it to an Awareness Event in Burlington tonight! Wish me luck!

 

[Cort]

HAPPY MAY 12th!

Gonna try to make it to an Awareness Event in Burlington tonight! Wish me luck!

Good luck! Tell us how it went