As things stand right now, one could say that it takes 20 years to get 1 year’s worth of ME/CFS research done. Why? Because the level of funding allocated for ME/CFS research is 20 times lower than that of comparable diseases.
Relative to other diseases the NIH has provided pennies for ME/CFS research …but that does not mean progress is not being made
For example, the NIH spends around $120 million per year on research about MS. The figure for ME/CFS is $5 million per year. (This in spite of the fact that ME/CFS affects at least as many citizens as MS, perhaps even twice as many.)
This means that it takes ME/CFS researchers 20-25 years to accomplish what MS researchers can get done in one year.
Actually it’s even worse than that. At least MS researchers are able to focus on damage to myelin covers of the nerves and spinal cord. Lacking a specific cause for ME/CFS, researchers, on the other hand, are all over the map. Many efforts are surely chasing ‘shadows’; i.e. secondary manifestations of the disorder that more obscure than illuminate.
At this pace, many years of many lives will go by before disease mechanisms, biomarkers and treatment are finally unveiled for ME/CFS. On the other hand, if ME/CFS was granted a level of funding on par with other high-impact diseases, we could quickly see very promising progress.
A case in point illustrating this:
The OMI-MERIT round table identified critical projects that could be done for a moderate amount of funding
In June 2012 the Open Medicine Institute (OMI) convened a round table forum in New York City for 27 international ME/CFS researchers, the OMI-MERIT group. Their goal was to identify and prioritize potential research projects into ME/CFS that could deliver practical results for patients in the shortest amount of time. In 2013 OMI-MERIT published their list of 10 prioritized project that would quickly create ground-breaking progress in the ME/CFS field. They have also estimated costs for these projects.
- See the list here and see detailed project descriptions plus a roll of the researchers involved in OMI-MERIT
OMI-MERIT estimates that $13.502 million in total will be needed to complete all of these projects. Some of them are urgently needed, like a confirmatory Rituximab study, an international biobank and the search for biomarkers via protein panels and immunologic studies.
At first glance, the figure of $13 million seems large. However, it could easily be covered if the yearly NIH funding for ME/CFS was raised to an equitable level. A budget matching that of MS, $120 million per year, would cover all the OMI-MERIT initiatives ten times over – in just one year! That way we wouldn’t have to wait 20 years for 1 year’s worth of research to get done.
What Can We Do? – Advocate and Crowdfund!
ME/CFS patients of course need to continue advocacy to get NIH and other funding bodies to move ME/CFS up their list of priorities. With NIH, right now things sadly seem to be moving in the wrong direction: Estimated funding for ME/CFS has dropped from $6 million/year to $5 million And as Cort stated in a recent blog, the ME/CFS share of the total NIH budget has in fact been halved, from less than .04% of the NIH’s budget in 1992 to .02% of its budget by 2012
(Also read Jennifer Spotila’s excellent piece here )
Crowdfunding has been an effective way to raise funds for ME/CFS
But we can also act on our own, by Crowdfunding ME/CFS research.
Some very successful fundraising efforts are being carried out. The MEandYou Foundation raised large sums of money for the Norwegian multi-site Rituximab trial (now 95% funded) and Invest in ME crowdfunding a UK Rituximab trial is now 81% funded ($474,000). The OMI Crowdfunding B-12/MFTHR trial was successfully funded.
Let’s all try to rally friends and family to donate to biomedical ME/CFS research.
Choose your favourite cause/organization and spread the word. Donations are easily made online (via a credit/pay card or PayPal).
Here are a few tips (all gifts to these organizations are directed towards biomedical ME/CFS research):
Projects
Lipkin Microbiome Project
Dr. Lipkin believes ‘the action’ in ME/CFS is in the gut
Probably for the first time ever, an eager Dr. Ian Lipkin is turning to crowdfunding to get a study done. Dr. Lipkin’s $1,000,000 Crowdfund effort aims to get at where he very strongly believes ‘the action is’ in ME/CFS – the gut microbiome. If everyone with ME/CFS in the US donated $1 or if 10% contributed $10, the study would be mostly funded. Find out more about the study here and contribute here.
OMI-MERIT/Open Medicine Foundation
The OMI has almost too many funding opportunities to mention. It’s OpenMedNet online bioinformatics program will open soon. Learn more about the OMI here and donate here.
Simmaron Research – Redefining ME/CFS
Simmaron’s goal is to ‘scientifically redefine ME/CFS”
Simmaron recently sponsored 8 immunologists to go to the IACFS/ME conference to produce immune recommendations for the CDC. The only organization given access to the NIH’s biobank of XMRV associated samples, Simmaron has a slew of projects underway, and right now there’s an opportunity to double your donation to Simmaron through a matching donor offer!
ME Research UK (MERUK)
MERUK has a variety of projects underway including a Vit D3/cardiovascular study, a study on muscle bioenergetics and an autonomic nervous system study by Dr. Julia Newton. Donate here.
Rituximab Clinical Trials
Norway
Another successful Rituximab trial would be a turning point for ME/CFS
Another successful Rituximab trial could break this disease wide open. Two initiatives are raising funds for the multi-site Norwegian Rituximab trial by Drs Fluge and Mella:
- MEandYou Foundation (PayPal donations)
- ME-forskning, a Norwegian ME Association initiative (donations through VISA and Mastercard)
UK
The UK Rituximab Clinical Trial – Just 20% to go and this big trial is fully funded!
CFIDS Association of America (CAA)
The CAA is making use of it’s Biobank in creative ways including a large study by Lasker award winner, Dr. Michael Houghton, that may have found a biomarker. Find out more here and donate here.
Lasker award winner, Dr. Miachael Houghton may have found a biomarker at the CFIDS Association of America
Workwell Foundation
Help the top ME/CFS exercise physiologists continue their investigations into the core issue in ME/CFS: the post-exertional breakdown.
The ME Association
The ME Association’s Ramsay Research Fund (RRF) is funding research into the post-exertional fatigue present in ME/CFS
Thanks for a great article, Anne. “20 years to get one year’s research done” is a briilliant line.
Thanks too for covering Ian Lipkin’s million dollar microbiome appeal. We have a long way to go with this but some patients are working very hard in the background to get a website and social media campaing up and running. If anyone wants to join in, they can reach me on psimcgrath@gmail.com.
Hi Cort/Anne
Just in case they were off your radar, there are a couple of other UK ME/CFS charities that also fund research:
Action for ME – http://www.actionforme.org.uk/get-informed/research/our-research-related-activity/
CFS Research Foundation – http://www.cfsrf.org.uk/index.php?option=com_content&view=article&id=65&Itemid=57
Don’t charities like actionforME support time (and money) wasters like counselling and exercise therapy?
I have to say is there know one in cfs community who knows real pr people or fund raisers? Is there no one who knows of any actors or celeberties? are we going to keep hoping that nih or some government agency will one day help? Why don’t we get it together already? maybe we are all to blame? Why keep trying the same things and keep complaining about the same results? It takes case examples, new research studies that we already have and an open heart with the truth.Period. Who wants to help me? I have never gotten any response from anyone in cfs community. Maybe it’s my poor spelling. I can do it with someone with records and information about patients ect. No I guess will just keep playing the same old song. Get it together cause you are going to be your own saviour not any government agency or anyone else.
Jimmy
Jimmy,
I love auto correct and an M.E./CFIDS brain, so you wrote
is there know one
when you probably were thinking
is there no one. 🙂
I am typing sound-alike words way too often lately. Fair when I meant fare, and so many others.
We have had actors help us, like director Blake Edwards, late husband of Julia Andrews. He had the disease for while and was very public about it. Laura Hillenbrand, author of two books, both jumped rapidly to be high in the NY Times best sellers list, one is already a movie, and I think the second is in process for release at the end of this year. So ill, she became a celebrity author, and is still so ill.
Various sports stars have spoken up for us, too. I am not so good with sports names so those fall out of my brain rapidly.
Now we have Ian Lipkin, a scientist of high repute taking our disease on. That is really very good.
I think we do get help, but we also have a very committed core of what I call enemies, that group based in England that thinks we are all incurable psych cases, a notion so appealing to too many. They keep spreading a view far away from compassion, and the pressure to find the treatments that work, that help.
It is unbearably slow, the progress of our supporters, I agree. But new people keep getting ill with this disease, it is not going away for me, or for the world at large. This is a life lesson that I did not want to learn, that medicine has its own politics, is only partly based on science, and my old field of transportation advances far more rapidly and logically to do its work in the world. That was a big surprise to me.
So it is, and so we keep being our own advocates, and letting the world know we are still here, still ill, still wishing for better.
What sort of response are you looking for, from someone in the M.E./CFIDS community?
Sarah
Jimmy, you hit the nail right on the head. I don’t believe crowdfunding is going to be more than a drop in the bucket. So many of us are too disabled to work so we have very little money to donate, and we have little energy to do the promotion that crowdfunding needs. We simply HAVE to get through to the wider world. As far as celebreties (I don’t know how it is spelled), we would need a huge star – as much as I love Laura Hillenbrand, people don’t run to the mall to buy her clothes or pay thousands to attend her concerts. Look what HIv/AIDS and breast cancer have done. We need an effort similar to those, which means we need deep pockets and passionate, influential people. Oh, and someone in the government who will listen to us (or better yet, understand the facts).
Maybe we need to work with both of these strategies? (crowdfunding AND getting through to the bigger world) In fact, I think they are interrelated.
When I think about crowdfunding I dont think it’s us, the patients, ourselves who are going to do it, but we need to reach out to friends and family. Something that’s been really successful for many people is letting friends and family know that donations to ME/CFS research is a good way to celebrate one’s birthday (and a great Christmas gift). This has brought in some decent figures, without taxing the strained economy of the patient herself/himself.
The Whittemore Peterson Institute is also raising funds for Research.
Dedicated to Neuro-Immune Disease integrating: patient treatment, basic and clinical research, and medical education.
Our Mission
To bring discovery, knowledge, and effective treatments to patients with illnesses that are caused by acquired dysregulation of both the immune system and the nervous system, often resulting in life long disease and disability.
Goals
1. Facilitate and advance patient care
2. Research the pathophysiology of neuro-immune diseases such as ME/CFS, fibromyalgia, Gulf War illness, atypical MS and autism.
3. Develop therapeutics, diagnostics and prevention strategies for this spectrum of diseases
4. Advance and support medical education and physician training