(Thanks to Anne for providing this eye-opening guest blog on the funding situation facing Chronic Fatigue Syndrome (ME/CFS). Anne has pledged to donate her share of any blog donations to ME/CFS research. Part II of Anne’s series on ME/CFS funding will appear shortly) Find out more about Anne here and more about our guest blogging policies here.
In federal budgets around the world, biomedical research into ME/CFS (chronic fatigue syndrome) has been allocated either ridiculously small amounts of money, or no money at all.
Take the world’s largest medical research funder; the NIH (National Institutes of Health) in the US. The NIH theoretically distributes funding for disorders based on parameters such as the number of patients affected, illness severity and societal costs in the form of health care and lost productivity.
National Institutes of Health Plays Favorites
That’s theoretically… The US government in fact plays favorites – showering some disorders with cash, modestly funding others and virtually ignoring others. How it actually allocates funds is not clear, but need is clearly not its only driver. Let’s look at different disease groups.
The NIH allots around $5,450 million per year to cancer, $800 million to obesity, $230 million to arthritis, $150 million to Parkinson’s disease, and $130 million to epilepsy. The figure for chronic fatigue syndrome is $6 million per year.
And per person afflicted? According to the Fair Allocations In Research Foundation in 2013 cancer research received $4,400 in funding per cancer patient. Compare that to the $150 per patient prostate cancer and Parkinson’s Disease research receives yearly. Then compare that to the $85 per patient for Alzheimer’s research and the $45 per patient for Hepatitis B.
Finally compare that to the funding for ME/CFS research: $6 per patient per year!
Based on prevalence, suffering and societal costs, the funding for ME/CFS in the US is about 20-30 times smaller than it should be. For instance, multiple sclerosis (MS) prevalence is about half that of chronic fatigue syndrome yet multiple sclerosis’ NIH budget ($120 million) is 20 times higher than that of ME/CFS. Both ME/CFS and asthma cost the US economy around $20 billion per year in economic losses, yet asthma gets 40 times as much NIH funding ($250 million/year).
Among the 233 disease categories the NIH lists, chronic fatigue syndrome – at $6 million per year – is 218th in funding.
ME/CFS is not alone at the bottom. In fact, all of its so-called allied disorders such as fibromyalgia (FM), irritable bowel syndrome (IBS) and interstitial cystitis get short shrift at the NIH. Fibromyalgia gets about $2 per patient per year in research support and TMJ less than $1 per patient per year. Interstitial cystitis affects around 700,000 people and gets about $18 per patient per year in funding. IBS is conservatively believed to effect 30 million people in the US and cost the US economy $22-30 billion dollars a year in economic losses, yet the NIH does not even break out spending for IBS.
These are all complex disorders that primarily effect women, have low death rates, are relatively new on the research scene, have high social costs and for which few treatment options are available. Their clustering at the bottom of the NIH’s funding list suggests the NIH has trouble funding these types of disorders.
With only a handful of NIH funded ME/CFS studies published each year it’s no wonder there are no biomarkers or effective treatments or that there’s such little understanding of the underlying disease processes. In fact, with such scarce funding the opposite would have been more surprising!
In the past 25 years biomedical ME/CFS research has come up with a number of interesting findings and launched several possible theories. There has been no lack of promising leads and exciting possibilities. But all too often successful initial pilot studies have not been followed by larger studies or independent confirmation. It’s no surprise, then, that many researchers have chosen a different, more lucrative and rewarding, career path.
When we hear that “there has been no proof of a biomedical cause for ME/CFS” and “in spite of decades of research, there is no cure for ME/CFS”, we should perhaps answer: “First, let’s spend as much money on biomedical research for ME/CFS as we do with other diseases, for a decade or two. Then, let’s resume this discussion.”
Even with its low level of funding, the USA, remarkably (and sadly), is still the world’s leader in biomedical ME/CFS research and many countries devote no money at all to this area. In some countries the government claims to be promoting ME/CFS research, but is in fact only funding research on the much broader, Oxford criteria defined “chronic fatigue”. This research is not exploring biomedical issues in ME/CFS, but trying out various psychosocial approaches to chronic fatigue, and is of very little help to patients with actual, Canadian criteria defined ME/CFS.
This deplorable situation must change. Increased funding for ME/CFS research is absolutely necessary if ME/CFS patients are to have a chance of one day getting better and returning to functional lives.
What Can We Do?
Quite a lot, in fact. For one thing, patients need to get organized in patient associations, so that effective advocacy can be carried out. Advocates for other poorly funded and supported disorders have successfully used advocacy techniques to increase research funding, implement treatment changes and provide support.
Until Betty Ford announced she had breast cancer in 1974, breast cancer was mostly a topic discussed behind closed doors. Using techniques pioneered by AIDS activists, breast cancer advocates were able to institute significant treatment changes into standard breast cancer protocols ( including using less invasive procedures), receive federal funding support and counseling, and most importantly hugely increase federal research funding. Autism is another disorder that has parlied strong activism into greatly increased federal funding. (Over the past five years federal funding for autism funding has increased approximately 40%.)
ME/CFS does not have to continue to get low funding.
Small Amounts Add Up If Everyone Provides Them
We also need to come together and start raising the money needed, little by little. Even when it comes to diseases with a decent federal budget, important research efforts are carried out with private funding. Charities are raising substantial funds for cancer, Alzheimer’s and many other diseases. We need to follow their lead. We need to start helping ourselves, by giving small donations, and then reach out to our family and friends and ask them to contribute.
It doesn’t take much to make a difference. Small pilot studies by non-profits can reap dividends if they strike gold. A small pilot study enabled the Australian ME/CFS research group PHANU to snap up a $800,000 grant. The CFIDS Association of America has been able to translate limited research funding into millions of dollars of federally funded studies.
Any sum directed at biomedical ME/CFS research could make a difference. With federal funding at around 6 dollars per patient a year, we could easily multiply the research budget if we all gave a little. If all ME/CFS patients donated 15 dollars, we would have at least tripled the budget right there. If everyone asked two friends or family members to do the same, it would again multiply.
Since non-profit ME/CFS research tends to be effectively targeted our money should make even more of a difference.
Donate $15 – Multiply the ME/CFS research budget!
Let’s all try to donate at least $15 to biomedical ME/CFS research, and then ask family and friends to do the same. Donations are easily made online (via a credit/pay card or PayPal).
Here are a few trustworthy funds, where all gifts are directed towards biomedical ME/CFS research:
- ME Research UK (MERUK)
- CFIDS Association of America (CAA)
- Let’s Do It for ME – Invest in ME
- Simmaron Research
- OMI-MERIT Initiative lead by the Open Medicine Institute (OMI)
Rituximab Clinical Trial Support
Two fundraising efforts have been initiated to support the Norwegian research on Rituximab/Rituxan in ME/CFS, with the goal of getting the planned large multi-center study started:
If you are in Sweden, you can easily contribute to Kronerullingen through RME, see www.rme.nu
– MEandYou Foundation, patient driven crowdfunding foundation
Got more funding suggestions? Please let us know in the comments.
And please leave a message in the comment section if you make a donation or spread the word. It’s always encouraging to see that we’re moving things forward together!
Many thanks to Cort for his help with this post!
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Learn how a 67 year old retiree and his wife felt compelled to lace up his running shoes and get into action to support their son – and everyone else with this disease in A Run For His Son…and Everyone