Emails Seek Equal NIH Funding for ME/CFS: 213 so far!
Patients have kicked off the email campaign for Equal Funding at NIH with a bang! At least 213 emails have been sent to Secretary of Health Sylvia Burwell and Dr. Francis Collins, Director of National Institutes of Health, since last Tuesday. Emails seek funding for ME/CFS research on par with Multiple Sclerosis’ $100 million annually.
With May 12 being International ME/CFS Awareness Day, we’d like to make a strong push to double that number this week. We can only do that if every patient who has sent an email asks a few friends or family members to send one as well. And patients who haven’t sent one, we are trying to make it easier. We posted a template at this link that copies more easily, so try it if you are having a hard time making the email work.
There are many support groups who can help by sharing this blog on their facebook and twitter feeds, so if you have the ability to spread the campaign, please do! There are thousands of patients who haven’t heard about this action yet, and we need more emails to push a stronger funding program.
We now have powerful ammunition to advocate for Equal Funding!
Two scientific reports in two months by experts independent of the ME/CFS field say the same thing: “The committee stresses that more research is urgently needed.” A window of opportunity has opened. Now we must work together to push NIH to increase funding for research. Join us by emailing the Secretary of Health and Director of NIH for equal funding for ME/CFS research!
No one will do this for us. It is up to us to make our voices heard. Please take positive action to raise the pressure for Equal Funding for ME/CFS. We can make this opportunity bigger by organizing our community to speak with one voice on the need for more research funding.
We share your perseverance and your community, and we thank you for making this extra effort. ME/CFS patients deserve EQUAL FUNDING!
I sent my e-mail but I’m from Brazil so I don’t know if it counts.
Plus I posted everywhere on the Facebook but it’s hard to get those lazy people excited to help… it looks like they’re fatigued or something! (Im just kidding people don’t kill me)
🙂
About 1,800 people saw the first blog on this site and it’s been posted on other sites. If everybody who read the blog actually sent the message out we would have a far better chance of getting our message heard – and funding increased.
Please everyone send the message out….It’s pretty quick – just copy the template – put in the email addresses and click send. Easy peasy..
It would be amazing if they gave 100 million to cfs but when you think about the trillions spent on war even 100 million for a serious illness like ms or cfs is pitiful
I am confident it will happen over time…the question is how much time? I’d rather sooner than later!
I jsut sent the e-mail. Thanks Cort!
Do you want this to be international or just US?
Do you want it added to the msy12th master list at http://www.bit.ly/May12th2015 ?
If you have a minute can you do a quick simple blog to promote May12th? Mention the May12th Facebook page (www.facebook.com/may12th.awareness) , website http://www.may12th.org and the master list mentioned above?
Ask everyone to tell one person and then ask that person to tell one person so we really spread awareness.
Also stay tuned for a great night if lighting up the night blue, purple and green. See who wins the challenge.
If you put #May12BlogBomb in it and post to Facebook it will get picked up in the blogging event.
Thanks
Cort
I sent one anyway from Canada. But let me know if it’s supposed to be international and I’ll help you promote it around Facebook.
I just sent the e-mail. Thank you for making it easier Cort! Anything too confusing and I’m lost. lol
I sent it. Also a slightly revised version to President Obama @ the White House, emphasizing his promise regarding ME/CFS. Maybe it is because of President Obama promise that the IOM was asked to research & report on ME/CFS?
If there are really millions of ME patients why is it so hard to get 1000 emails? I don’t believe that are so many patiënts in the VS.
Gijs, my opinion is that its because its hard to light a fire under peoples a88es, a lot of people are undiagnosed, and not everyone with the disease follows the latest on ME/CFS. I know for a good year or so I was completely out of touch with anthing ME/CFS related on the internet or elsewhere.
Thank you for the tools! Done and Done. I’m forwarding this email on to friends and family. Surely our collective voices will be heard.
Thank you for organizing! I’ve sent an email and a number of my friends and family have too. Hope to see an updated larger number soon!
Email sent!
Sent a shout out to my eight siblings. That’s at least a few more!
Isn’t there a chance we can get that on the Avaaz.org?
People sign without even reading it, and millions of people do it, just cause they know Avaaz work.
Done. Thank you for making this easy. I personalized mine.
I just sent the e-mail! I sure hope those guys get the message and send some research money in the right direction.
Add one more to the list of e-mails sent – from the U.K.
Thank you Cort.
Cool – thanks
Please could you tell me the source of the excellent fact that introduced this post in the newsletter email. The fact explained: “people with ME/CFS are worse off functionally than people with depression, RA and the big C (cancer)? And not just a little worse off either.” This is such a crucial fact – can anyone tell me who and/or what body or institute made this statement?
Here’s part of it
http://www.ncbi.nlm.nih.gov/pubmed/8873490
Am J Med. 1996 Sep;101(3):281-90.
Health status in patients with chronic fatigue syndrome and in general population and disease comparison groups.
Komaroff AL1, Fagioli LR, Doolittle TH, Gandek B, Gleit MA, Guerriero RT, Kornish RJ 2nd, Ware NC, Ware JE Jr, Bates DW.
Author information
Abstract
PURPOSE:
To measure the functional status and well-being of patients with chronic fatigue syndrome (CFS), and compare them with those of a general population group and six disease comparison groups.
PATIENTS AND METHODS:
The subjects of the study were patients with CFS (n = 223) from a CFS clinic, a population-based control sample (n = 2,474), and disease comparison groups with hypertension (n = 2,089), congestive heart failure (n = 216), type II diabetes mellitus (n = 163), acute myocardial infarction (n = 107), multiple sclerosis (n = 25), and depression (n = 502). We measured functional status and well-being using the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36), which is a self-administered questionnaire in which lower scores are indicative of greater impairment.
RESULTS:
Patients with CFS had far lower mean scores than the general population control subjects on all eight SF-36 scales. They also scored significantly lower than patients in all the disease comparison groups other than depression on virtually all the scales. When compared with patients with depression, they scored significantly lower on all the scales except for scales measuring mental health and role disability due to emotional problems, on which they scored significantly higher. The two SF-36 scales reflecting mental health were not correlated with any of the symptoms of CFS except for irritability and depression.
CONCLUSION:
Patients with CFS had marked impairment, in comparison with the general population and disease comparison groups. Moreover, the degree and pattern of impairment was different from that seen in patients with depression.
Thanks very much Cort – a pretty solid and hence compelling study – much appreciate you sharing. It would be really wonderful to learn where the study/information that bears out the remainder of the claim comes from, ie that CFS sufferers (or at least those at the severe end of the spectrum)are functionally worse off than those with cancer and RA…would love to see if at all possible. thanks again
Thanks very much Cort – a pretty solid and hence compelling study – much appreciate you sharing. It would be really wonderful to learn where the study/information that bears out the remainder of the claim comes from, ie that CFS sufferers (or at least those at the severe end of the spectrum)are functionally worse off than those with cancer and RA. I would love to see if at all possible. thanks again
Thanks very much Cort; a pretty solid and hence compelling study – much appreciate you sharing. It would be really wonderful to learn where the study/information that bears out the remainder of the claim comes from, ie that CFS sufferers (or at least those at the severe end of the spectrum)are functionally worse off than those with cancer and RA. I would love to see if at all possible. thanks again
Thanks very much Cort; a pretty solid and hence compelling study – much appreciate you sharing. It would be really wonderful to learn where the study or information that bears out the remainder of the claim comes from, ie that CFS sufferers (or at least those at the severe end of the spectrum)are functionally worse off than those with cancer and RA. I would love to see if at all possible. thanks again
Thanks very much Cort – a pretty solid and hence compelling study – much appreciate you sharing. It would be really wonderful to learn where the study/information that bears out the remainder of the claim comes from, ie that CFS sufferers (or at least those at the severe end of the spectrum)are functionally worse off than those with cancer and RA…would love to see if at all possible. thanks again