dSavannah note: If you follow me at all on social media, you’ll see that I am frantically tweeting and posting a BUNCH of articles & whatnot this week for #MEAwareness Month, and for the #MillionsMissing events that will be held on this Saturday, May 12. Because, as I said in my last blog post (and my first post in two months), it’s important. Not just for me, but for everyone else who suffers from this horrible disease.
(Please also note, I have done a bunch of advocacy already today, and I am very very tired. My eyes are burning. My back and wrists and neck and arms are throbbing, and the rest of me is not in much better shape, pain-wise. My brain is sputtering like an old engine that’s out of oil. But I’m determined to finish this post. So, as usual, please forgive any errors.)
Per the #MEAction Network, “Myalgic Encephalomyelitis (ME/cfs), also known as Chronic Fatigue Syndrome, is a systemic neuroimmune condition that causes dysregulation of both the immune system and the nervous system. The effects of ME are devastating enough to leave 25% of patients housebound or bedbound. An estimated 15-30 million people around the world are suffering from ME (emphasis mine).”
Also per the Network:
ME Research Funding Statistics Around the Globe:
1) In the US, ME research funding is between $3-8 per patient per year. A similarly disabling disease such as multiple sclerosis receives about $242 per patient per year.
2) In the UK, MS has received 20 times the funding as ME.
3) In Canada, where 1.9% of the Canadian population have been diagnosed with ME, funding for ME patients averages around 11 cents per patient.
4) In Australia, approximately AUD 110,000 is allocated to ME/CFS each year.
Not only is funding very low, a preeminent researcher and reporter of #MEcfs, David M. Tuller, PhD, at University of California, Berkeley – has had to CROWDFUND his research! That’s right. He has been forced to ask the MEcfs community, many of us unable to have jobs, with no disability benefits, no income, and little support, to help fund his work! (Note: the goal for 2018 has been made, so the current campaign is closed, but clicking on that link will give you more details on the research and reporting Dr. Tuller does.)
Well, as dire as those numbers are, some other diseases have it worse in terms of funding.
If you’re wondering where such funding comes from, well, in addition to private donations, it comes from our government. In the U.S., the National Institutes of Health (NIH).
I was inspired to write this article when I came across a Facebook post by Charis Hill, a fellow advocate. She has Ankylosing Spondylitis (AS), a form of arthritis that (in my simple terms, as I understand it, causes severe pain from joints fusing together).
I asked if I could share her words on my blog, and she gave me permission, so here they are, exactly as she wrote them:
This is a message about your tax dollars at work.
April was Spondylitis Awareness Month. This past Saturday was World AS Day, and May is Arthritis Awareness Month.
What do all these awareness periods have in common? Ankylosing Spondylitis (AS). It’s the most common form of Spondylitis, which is one of the most common forms of arthritis.
I’m sharing the link to the National Institutes of Health (NIH) disease research budget. This is the Nation’s medical research agency – it’s federally funded, just to be clear.
Nowhere on it will you see a line item for Ankylosing Spondylitis, or even Spondylitis. And yet Spondylitis impacts 2.7 million people in the USA.
For reference, here are some other diseases that do have a line item in the NIH budget:
- Multiple Sclerosis (MS) – 400,000 impacted
- Rheumatoid Arthritis (RA) – 1.3 million impacted
- Amyotrophic Lateral Sclerosis (ALS) – 30,000 impacted
If you add those up, the amount is less than the number of people impacted by Spondylitis.
Seem unfair? I think so too.
All life-threatening and/or severe incurable diseases deserve adequate funding – at least, that’s what I think. More research means greater awareness, better treatments, and a path to a cure.
Unfortunately, funding isn’t simply allocated based on a special algorithm of which disease needs it more or how many are impacted. Rather, it gets decided based on whose voice is louder – which grant proposals are sexier, who shows up to lobby for funding, and what shows up in the media more. Oh, and there’s also some data mining.
Funding for each disease category is up for vote by Congress every year and only a certain number of disease categories can make the list (this number has grown or shrunk depending on the total budget – someone correct me if my logic is wrong). If it sounds like some sort of sci-fi game show where the stakeholders die if Congress votes them out, it is. Is that like the Hunger Games? I don’t know, I didn’t watch it.
If you think about it, those who already have a line item of funding in the budget find it easier to convince a politician to vote to renew it – because existing funding provides resources for advocates to return to ask for it again. It’s a sort of foot-in-the door privilege. Politics.
Which, you guessed it, makes it harder for diseases without funding to get that first line item. Advocates have to convince Congressmembers it’s worth funding a ‘new’ disease, and the convincing has to be good, because if a ‘new’ disease gets a line item that means another disease that had funding can now lose it or get less.
It’s a wicked game.
And we can, and should, do better.
- Advocacy training from the Arthritis Foundation (2014-2016)
- Also – pay attention to other diseases that also lack funding. I can only speak from an educated place about the disease I personally live with. *
So, in essence, if you look at the NIH Budget page, “Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC)”, you’ll see this for MEcfs:
And this, for fibromyalgia, one of my conditions (which, by the way, many doctors don’t believe even exists, same with MEcfs):
That is compared to three types of arthritis (which, by the way, I have osteoarthritis; again, note no line item for AS):
And (if I counted correctly), 15 types of cancer:
The highest amount of funding goes to Clinical Research (what kind is not explained… so many questions):
I could spend hours looking at that list, and only get mad and confused. So I’ll stop there, as you probably get the idea, but I urge you to look at the funding yourself.
And once again, you probably have no idea what to do with this information, or what you can do.
Well, you can write your congresspeople. You can lobby your local politicians. You can do the things I mentioned in my last post.
AND, you can: Sign the #MillionsMissing Global Petition for ME Equality to Health authorities around the world: https://my.meaction.net/petitions/the-timeforunrest-global-impact-petition
It’s Time for Unrest!
(PS thanks again to Charis Hill for allowing me to share her post and spurring me to find and share the additional information. And apologies if the screenshots from the NIH page aren’t clear. I’m too tired to try to figure out why or to fix it.)