(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.
ME/CFS receives low levels of funding world-wide
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.
Not Alone
Disorders like ME/CFS and fibromyalgia have amongst the smallest piggybanks at the NIH
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.
Consequences
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.
Effective advocacy has enormously increased funding for other disorders.
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:
– Kronerullingen, fundraising effort by The Norwegian ME Association
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!
Please Support This Author and Health Rising!
Forty Percent of Paypal Donations Go to the Author of this Blog
Anne will contribute her share of donations to ME/CFS research
Thanks Anne (and Cort). I have in the past made small donations to three of the named researchers, but a timely reminder the need is still very much there.
Thanks Enid. I should take this opportunity to let everyone know that Simmaron made its funding goal for its spinal fluid collaboration with PHANU. Simmaron’s pilot data was critical in helping PHANU get that big grant.
Hello Anne and Cort,
I would like to help spread the word. I am writing about ME/CFS for public awareness and education. I am in Canada. Would you like me to share this article in the book with the resources mentioned? I would request your permission to do so.
Thank you, Please contact me by email if so.
Thanks
Val
It’s fine on my end Valerie….Good luck with the book.
It’s an excellent point that even a small contribution can multiply our progress greatly.
I’ve been on the fence about where to put my money because I would like to fund areas of research that I really believe in. But in the end, you’re right. Any biological research is valuable, even if it only rules something out and thus allows other researchers to go in different directions.
I have made a donation today. Thank you for the inspiration.
Dear Anne and Cort:
I want to thank you both for the excellent article on the NIH’s current funding for ME research. You are right, it is imperative that the level of funding for this disease be raised significantly. A major factor in gaining additional support from the NIH comes from the number and quality of research applications that are made by researchers who have the ability and infrastructure necessary to do this work. However, most of these grants require preliminary data. Funds that support the preliminary work are the responsibility of the researcher or research organization. For this reason public support,(your support) is critical to assure the continued success of researchers who are engaged in ME research such as Dr. Lombardi and Dr. Khaiboullina of the WPI. The institute’s researchers have gained the support of the NIH, DOD and collaborators beyond the institute because of their scientific skills and substantial research infrastructure, including sophisticated research equipment and organization.
The public can learn more about WPI’s most recent research results at the upcoming lecture by Dr. Kenny De Meirleir, January 28th, 2013 at the David Lupan Auditorium in Reno, NV. Please visit: http://www.wpinstitute.org to learn more about WPI’s research program and to donate funds in support of this critical work.
Thank you,
Annette Whittemore
A great piece and a great reminder, Anne. Thank you for doing this. Cort and Anne, do either of you know of a way that those of us here in the U.S. can make a financial gift to to the Norwegian Rituxan study and receive a tax deduction for it?
Good question, Brennan. I will forward it to the boards of the two Norwegian initiatives and see what they reply.
If it’s not possible to get a US gax deduction for a donation to the Norwegian foundations, maybe you could go with a donation to the OMI-MERIT initiative, which also has a Rituximab study in the pipeline:
http://openmedicineinstitute.org/donate-to-research/current-me-cfs-campaign/
I think what would help is also a big campaign between the patients and ME organisations. Regarding our forces and possibilities – I would chose 3 small research projects with maximum amount of 100 000 USD for each project (maybe 1 on each continent – America, Europe, Australia to get worldvide interest) and then 1 big project like maybe OMI or Norwegian Rituximab study.
If a study would get that amount of money we would chose another one – so there would be neverending fundraising campaign. There could be a website or facebook page (I would prefere one which already exist because we have alreay so many sites that many patients are already lost) where we could see the promotion for the studies. it would be also good to see each 1-2 weaks the results how much money were donated what can motivate also the patients who are sceptical on the beginning.
Your ideas make a lot of sense to me! If individuals can see their small donations are really adding up to fund worthwhile projects, that should make a difference in the amount donated. There are already well established sites with fundraising information, like the ME(ME/CFS) Fundraising Group on Facebook, Advocacy and Fundraising forums on Phoenix Rising, the Advocacy forum at Co-Cure, and others. Information could be frequently updated.
Thanks for this great article. I agree that private fundraising beginning with us is an excellent way to begin. Any amount of cash is an improvement, and the relatively small amounts we can raise do make a difference for those initial research projects. There is still lots we don’t know, so lots of room for these.
Lobbying the government, and seeking alliances with philanthropic organizations and individuals would be great, too. Some of the needed research needs larger grants. As noted above, we already have lots of leads to follow up on, some very promising for treatment, for diagnostic aids, and for understanding biomedical pathology. More coming in, and more possible.
Ethics and common sense both indicate better research for a thorough understanding of our disease/disease spectrum so we can have appropriate treatments, possibly a cure, and either way take a greater part in society (including self-care and hopefully work) and so reduce the cost to society (the common sense part) and a better quality of life (the ethics part).
Anne, thank you for your critical analysis of the NIH’s neglect of ME/CFS research funding. That’s precisely the question I asked President Obama in the Reno Town Hall meeting, which prompted the President to urge the Secretary of Health to “elevate CFS in priority” at NIH and the Department of Health and Human Services last fall. The President’s engagement is unprecedented for ME/CFS, but funding remains a crisis. We certainly have more organizing work to do. I also support your encouragement to contribute something to pilot research happening outside the NIH. There is real scientific progress happening by foundations like Simmaron Research and others, and we have to fund what we can to lead the way.
In hope and action,
Courtney Miller, Reno
Pilot studies are our ‘entree’ into the NIH and big money :). The more data gathering pilot studies Simmaron and other research foundations can do, the better chance we have at bringing in the big multi-million dollar studies the NIH specializes in…
We need the small private/non-profit research foundations such as Simmaron, WPI, CAA and others to be successful…
Thank you so much, Anne and Cort, for bringing up the awarness amongst your readers!
Truly, people do not know their true power to change our world-and in this case; the science and the road to knowledge. It´s not one person that do the change, it´s everybody that contribute in small ways. Right?
Supporting science is to be on the winning team, although it sometimes take time.
I am the initiator of http://www.meandyoufoundation.no/ and the leader of the board, a medical doctor, sick for years with ME, got Rituxan on Haukeland-and, at the time beeing, feel completely healthy.
The board also consists of one of the most wellrenovned scientist in Norway, Ola Didrik Saugstad, with a high international reputation, and of course, people that know the financialworld and how to deal with money.
Even though this is a professional board, we are all closely related to ME. Please read more about the board if you are interested. ( http://www.meandyoufoundation.no/the-foundation.html)
I now use my regained health and strenght to work for, both political and through this MEandYou-campaign, to get more awareness and money where they belong: Biomedical research in, finding the mechanism for and a way to diagnose ME. We are working with, and informing, Haukeland Hospital at every step.
In MEandYou we are all working complety pro-bono, including juridical and accountant services, professional advertising agency etc, so that every Norwegian kroner possible are transfered directly to the Rituxanstudy. This organization has only one goal: Full finance of the 3 phase of Rituxan study, which is absolutly necessary for it to have any impact and as a plattform for further research.
We will do this through to channels:
1. Crowdfunding: patients, relatives, friends, colleagues, politicians and “ordinary people” who support knowledge. We have allready had great meetings with Norwegian govermental politicians who actually supports us.
2. Philantrophist: Gathering for larger and smaller meetings and through the business network which the board represent.
MEandYou are now working with a launching campaign, and are actually not launched officially yet. Nevertheless, the sita allready has a Pay Pal button on the site that is alive, and kicking in money directly for Haukeland Hospital and their research on ME lead by Drs Fluge and Mella.
When it comes to financial gift to the Norwegian Rituxan study and tax deduction, the organization either
1. Have to be an charity organization approved for tax deduction must have received their 501(c)(3) tax-exempt status by the US goverment. No Norwegian org will get such an approvement.
2. Have to collaberate with an organization in US that gets such an acceptance from the goverment and are raised for this purpose, collect gifts, and then transfer the fund raised to our organization in Norway. If someone would like to take such an initiativ we would be really excited! Please contact us on MEandYouFund(at)gmail.com
All contributions, small or big are heartly appreciated. Spreading the word and lifting this fundraising up so it can fly world wide, equally. Together we can actually make things happen for the benefit of the patients.
/Sorry for my stumbelling English, but nevertheless,
A heartly thank you from,
Maria Gjerpe,
Medical doctor, initiator and the board chairman
Thanks Maria and good luck with your efforts. Fluge and Mella’s exciting work shows how much of a difference a small group of people can make. In some ways Norway is ground zero for treatment options for ME/CFS and its great to hear that you’ve built such a strong team. Congratulations on your improved health as well 🙂
Thanks for comments, everyone!
Here’s info on another ME research foundation:
Ramsay Research Fund (RRF)
http://www.meassociation.org.uk/?page_id=1086
From the RRF:
“The most effective way of donating to the RRF is by sending a cheque to the MEA Ramsay Research Fund, or doing a direct bank transfer. (…) All money sent to the RRF is ‘ring fenced’ and goes into research. There are no salaries to pay in the RRF and all RRF administrative costs are paid out of our general funds.
The RRF is currently funding post-mortem research, the second year of the UK (blood sample) biobank, further research into mitochondrial dysfunction, and a new study which aims to investigate the pathophysiology that causes post-exertional malaise.”
An illustration of the amount of money invested in research into ME/CFS from ME Analysis:
http://www.youtube.com/watch?v=eZkoKObgvfs
Thanks for the great analysis and the ideas for action.