The Chronic Fatigue Initiative (CFI) announced today is an exciting development in the field of CFS research, where so many promising avenues remain unexplored. The CFIDS Association congratulates the Hutchins Family Foundation and Scott Carlson on the engagement of top institutions and leading experts to help solve CFS. We thank the Hutchins Family Foundation for the infusion of $10 million to speed answers.
“In a field where there are not just gaps, but huge chasms to fill, we are thrilled about the enormous boost in scientific capital the CFI provides to the study of CFS,” said Kim McCleary, CFIDS Association CEO. “There are few diseases of the magnitude of CFS that have such sparse resources dedicated to them. Our missions are solidly aligned and we are pursuing highly complementary approaches to transforming research that will improve patients’ lives.”
The CFIDS Association is focused on objective diagnostics and improved treatment. Our most recent Request for Applications generated 36 letters of intent this spring; full proposals invited from 27 investigators in six countries are due on Sept. 30. New awards will be announced in early 2012 after a thorough review of scientific and strategic merit. The CFI will focus first on pathogen discovery and epidemiology, funding projects at Columbia University and the Harvard School of Public Health.
Early in the CFI’s discovery process, the Association helped CFI leaders understand the CFS landscape, identify key players and assemble the infrastructure needed to launch the Initiative. Russell Bromley, principal of TRAC Consulting and former chief operating officer of the Myelin Repair Foundation, advised CFI during the planning stages. He is now a member of the Association’s Scientific Advisory Board. Two other members of the Association’s Scientific Advisory Board, Nancy G. Klimas, MD, and Lucinda Bateman, MD, will recruit study subjects for CFI.
“In order for CFS to be widely understood, diagnosable, curable and preventable, we have put research first to build a critical mass of researchers dedicated to unlocking its mysteries. Today’s announcement is welcome news to all of us working to end the suffering caused by CFS,” said Suzanne D. Vernon, PhD, the Association’s Scientific Director.
In October, Research1st.com will feature updates on results from the latest group of research projects funded by the CFIDS Association. Make sure you’re up-to-date on all the research news; subscribe to new posts by email: http://bit.ly/mX0qRE.
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I think it’s going to take one huge study to truly get a handle on CFS in a reasonable amount of time. A study with hundreds of patients which measures gene expression, cytokine/chemokine profiles, SPECT/PET/MRI, pathogen detection, complement C4a, RNaseL, elastase, interferon, etc., with all of these done before and after standardized exercise testing. Basically measure anything and everything that has ever shown up positive in any ME/CFS study and then try and put the puzzle pieces together to see what, if anything, matches what.
Then if subtypes did emerge you would have a solid basis to start treatment studies with participants divided by subtype to see if one subtype got better, one group maybe nothing happened and another might even be made worse, which is basically the norm for ME/CFS treatments. I bet big pharm would have a field day trying out all kinds of off the shelf drugs on an entirely new patient population with tens of millions of patients worldwide.
You could even do an updated C3 computational challenge where you released the raw data from the study upon publication and let other groups, institutions, etc. have a crack at it, even overseas like IIT in India. I bet computer science professors would have a blast having their students try and analyze the raw data from a study like that. If someone from CFI reads this, put it all in one basket and let’s roll! Thank you so so much to everyone involved, this is absolutely fantastic news!
Edit- Sorry, forgot to say please!
Why is CFS still being used when the rest of the world has incorportaed ME/CFS. Will the research be for the CDC’s CFS?
The name, various definitions for clinical and research purposes and classifications for insurance purposes, etc. are very much in flux. Patients for CFI’s studies will be selected by well-known and respected clinical experts: Dr. Nancy Klimas, Dr. Lucinda Bateman, Dr. Jose Montoya and Dr. Dan Peterson. (http://cfinitiative.org/lead-researchers/)
I think the Initiative looks great, but I too am hesitant about the name. We are finally moving away from the fatigue focus, with the use of the term ME/CFS and not least with the new ICC definition published this summer. “Chronic Fatigue Initiative” is an unfortunate title, I feel.
However, hopefully it will still be a fantastic research program!
Is the CFI biobank mentioned the same as the CAA biobank? Or are these two different projects?
Forgive me for not following – brain fog…
These are independent efforts, Camilla. It will be advantageous to have two sources of well-characterized samples available to validate discoveries.
This news is so exciting, I feel like jumping for joy! Thank you to the Hutchins Family Foundation for funding the Initiative and to everyone involved in setting it up. We know we don’t have to worry about whether the patient population involved in the studies will truly have ME/CFS (as opposed to just fatigue or something else) because the patients are coming from Drs. Klimas, Bateman, Montoya and Peterson.
It’s just so nice to hear good news for a change!
Wonderful news! The more I read, the happier I get. Isn’t this what the NIH and the CDC should have done ten, or twenty, years ago? (Even though I am aware that some of the techniques probably didn’t exist at that time.)
This should move the field forward in a huge way. And it’s great to here that there will soon be two well-characterized biobanks, as you say, Kim, for validation. Things could really be happening soon!
Thanks to the CAA for guiding the CFI leaders in this process.
Thank you Hutchins Family. You are wonderful!
I am very annoyed at the name, “CHRONIC FATIGUE Initiative” ! I cannot believe it!
Ms. McCleary’s response to the previously noted incredulity about the name, given the new ‘International Consensus Criteria’s’ huge push forward is a *non-response*. HOW MANY hundreds of times will sufferers have to lament and struggle in seeming futility to rectify the horrible wrong foisted upon all ME sufferers by the CDC with the name “Chronic Fatigue Syndrome”.
I would think the doctors mentioned would know how to diagnose ME sufferers from all others…. That is not the point!
There is no dispute that the name ‘CFS’ has been the bane of everyone involved in this stupefying multi-decade battle.
Now, when an ‘ME organization’ (?) puts out a press release of the “INITIATIVE”, we seemingly cannot even manage to include the word *Syndrome* in between the words Fatigue & Initiative.
This undertaking, no matter how successful it could be will still serve to reinforce the words CHRONIC FATIGUE in the medical & research community’s minds, not to mention the media’s and everyone elses and thus the patheitic & incredibly dangerous stereotype that this illness still has right to this day!
How could you, in all good conscience NOT EVEN make the title, “The Chronic Fatigue Syndrome Initiative” if not The ME/CFS or ME Initiative?!
If the name isn’t changed (quickly) , you will flagrantly betraying the hopes of all who suffer so much & the memories of those that are not here anymore : from the illness AND from stereotypes that are only propagated EVERY TIME the “CHRONIC FATIGUE INITIATIVE” is mentioned in press release or media article.
It is exactly due to the cavalier attitude (nurtured by such ill conceived monikers) far too many MDs have, thinking this illness is harmless at worst why I’m so profoundly ill today & SO MANY OTHERS ARE AS WELL.
I do not have CHRONIC FATIGUE!
Signed,
A Very ill & very angry M.E. patient/sufferer.
Steve, your feelings and concern about the name chosen by those at the Hutchins Family Foundation who are funding this effort have certainly been expressed by many others. Just to clarify, the CFI is an independent effort. Anyone with questions for or comments about the announcement or the project is encouraged to contact CFI directly at info@CFInitiative.org.
I do not care what they call it as long as they find successful treatments & a cure for this horrible, monsterous illness!!! However, I hope that once they find out the answers (causes, treatments) then they will classify it appropriately…
You said: “Early in the CFI’s discovery process, the Association helped CFI leaders understand the CFS landscape, identify key players and assemble the infrastructure needed to launch the Initiative.”
Could you please tell us exactly what you tell them about the CFS landscape and who you identified as key players?
Thank you.
The CFI leaders conducted a very thorough assessment of the field. They had numerous meetings, spoke to many of the leading researchers and physicians directly and attended several events over the course of their planning stages. Their research and clinical team represents some of the top names in the field and draws on new expertise from individuals who are top names in other fields. http://cfinitiative.org/lead-researchers/
“The CFI leaders conducted a very thorough assessment of the field. They had numerous meetings, spoke to many of the leading researchers and physicians directly and attended several events over the course of their planning stages.”
Were patients ever included in this thorough assessment? Patients work so hard to try and get people to stop calling it ‘chronic fatigue’, even CFS researchers do this. Note to everybody, if you want to shorthand ‘chronic fatigue syndrome’, just call it ‘CFS’- ‘CFS’ has even less syllables than ‘chronic fatigue’ so it’s a win/win. ‘Fatigue’ and ‘chronic fatigue’ are almost slurs against ME/CFS patients, with ‘chronic fatigue syndrome’ not being much better to begin with. Did the CFIDS Assoc. ever bring up the subject of the name? This fatigue crap has got to go. Diabetes isn’t called ‘chronic thirst’, Parkinson’s isn’t called ‘chronic shaking’ and autism isn’t called ‘chronic fecal smearing’. It’s just dangerous and gives a totally skewed representation of what the disease actually is.
PS- Good job to the CFIDS Assoc. for picking out such a solid group of researchers. I think a lot about what I’d do if I won the lottery and they are the same individuals who I’d pick to lead a collaborative as well.
Would it be possible for the CFIDS Assoc. to do an interview with the people involved in the CFI for the CFIDS Link or something? It would be neat to hear what the CFI’s gameplan was, for instance it kind of seems to me that in contrast to peoples’ fears about the CFI studying non-specific ‘fatigue’, what they actually might be doing is selecting a ‘classical ME’ cohort of sudden onset, sore throat, swollen lymph node patients to try and circumvent the subset issue from the outset by careful cohort selection.
Kudos again, CAA, and thanks again to the Hutchins family.
Last thing- ME/CFS patients are sick, not tired!
John, we’ll continue to include information about the CFI’s plans and progress here on Research1st.
As reported in ScienceNow, the Hutchins family has several friends with CFS. (http://news.sciencemag.org/scienceinsider/2011/09/family-puts-10-million-into-chronic.html?ref=hp) We and others certainly questioned the name they had selected but it was an issue firmly settled.
It looks like a good group of experts to work on this initiative. I, too, dislike the CFI name. It is like saying one is climbing an anthill when faced with Mount Kilimanjao.
Friends of mine just do not understandd this disease, partly because of its misnomer. One friend, a retired health professiona, said to me one day as I tried to walk six bloks, “Oh, if you go outside and walk, you’ll perk up.” Yikes, as I struggled to walk a short distance, feeling like I was walking 5 miles.
I’m glad this group of doctors and researchers gets that this is a serious disease.
How did the CFI come about? Who organized it? I can see that the Hutchins Family Foundation and an individual gave $10 million for research. Great!
It is too bad that the government isn’t funding much, although NIH did give money to the Lights and to Natelson and one other. That is a start.
Hope to see a lot more and soon.
Any progress on research is great. However, I would continue to encourage everyone to modify the name for this disease – for many reasons, but the most critical is it’s impact on funding. I have a number of friends/family/acquaintances who would happily contribute to a worthy cause. However, in their minds, “fatigue” is not a worthy cause. So I’ve stopped telling people the name of the illness which has disabled me (stolen my life), because they don’t take it seriously. And if they don’t take it seriously THEY WON’T CONTRIBUTE MONEY. So realistically, we’re losing (easily) $1 Mil each year from just my circle of friends/acquaintances. And I’m sure I’m not alone in this dilemna. So just think about the multiplier of what we’re losing in funding each year. e could ensure the maximum contribution from their circle of – just from the people we know. Then add the funding from strangers who, with a new name in place, might think the disease is actually worthy of funding. I’m guessing we could easily achieve 10 times the current level of funding, just by changing the name of this disease. probably much, much more, but I’d like to be conservative for the sake of this argument.
Realistically, IT’S ALL ABOUT THE MONEY. If anyone is “indifferent” to the name issue, they need to understand that it’s not just about the name – it’s about funding to treat/cure patients. So we just need to bite the bullet and quit “f-ing” around with this “name” thing. It is holding back the research needed to find effective treatments and cures. And the longer we sit with grossly inadequate funding, the longer all of us patients will contine to suffer and die early due to the slower pace of research. This is not a debate about word preferences – IT IS A DESPERATE PLEA RELATED TO SAVING LIVES. So let’s all find the courage and the discipline to just do this. It is a very manageable task. In Chicago, for instance, it took less than a year for people to start calling the iconic Sears Tower by it’s new name, the Willis Tower. Almost no one was familiar with the Willis company when it changed the name. But since everyone who mattered (newscasters, CEOs, politicians, etc.) started using the new name religiously, everyone else fell in line. I’m certain the same thing would happen if ALL of our Leaders in the CFS community started CONSISTENTLY using a new name. Reporters would repeat what the Leaders say, so the proper name would consistently appear in print. Patients and physicians would follow. And we could link the old name with the new for as long as it takes for the insurance companies and medical community to adjust. Lot’s of work, but quite do-able. And a relatively small investment for the resulting change to how the illness is perceived and funded.
Please everyone – our lives depend on finding effective cures/treatments for this awful disease. And the success of these efforts is directly tied to research funding. Without adequate funding, we (patients) will continue to suffer without hope for another 30 years. Are we really willing to accept that reality because we’re afraid/unwilling to tackle a name change??? My challenge is for the Leaders in this field to either step up to this challenge step down. We can’t win this fight without monumental increases in research funding, and we need our Leaders to do whatever is necessary to maximize the funding for this terrible disease. So it’s time to get off the fence – either you’re in or you’re out. This is not a gray area, and it’s not a bureaucratic issue. This is life or death. So step up to the challenge or step out – for the sake of all the patients suffering from this cruel diesease.
Respectfully,
Julie Decker
Chicago
Could CAA do a webinar with CFI reps on the Initiative? This would be one that I bet you’d get a lot of pre-questions on. Thanks a bunch.
In my view, if CFS/ME patients truly want billions of dollars of funding to be allocated to studying their illness, they need to first demand of their government officials’ that our medical establishment (NIH/NIAID) conduct a “Re-Appraisal of AIDS” (i.e., admitting that HIV is not the cause of AIDS).
I am not suggesting that CFS is AIDS, as I know most people don’t like sound of the ‘scarlet letter.’ I am stating is that AIDS patients are simply more CFS patients, which as CFS patients’ we already know it’s not caused by HIV.
Perfectly healthy HIV+ people are not even sick and they get billions of dollars in research and service funding. How does that make any sense to anyone? CFS/ME patients are the ones who are immunodeficient. Why can’t people see that the medical establishment simply has their paradigms (CFS, HIV) backwards? I measure success based on how many billions of dollars backs my government’s stale (“it’s caused by HIV.”) rhetoric.
ME + CFS + AIDS = 1 catastrophic epidemic (not caused by HIV)
7 Step Plan to resolving our World’s catastrophic public health disaster:
1. Demand research funding parity for CFS with AIDS.
2. Suggest that CFS & AIDS be researched together by scientists rather than as separate entities.
3. Urge the CDC to move their AIDS division under the CFS umbrella so they research all the infections that AIDS and CFS have in common.
4. Urge that AIDS organizations (like Amfar) include CFS under their umbrellas so that CFS advocates don’t have to reinvent the wheel.
5. Demand that the White House, Fauci and the Director of NIH make a public statement that (just from what we know today) in terms of the immune dysfunction and human suffering, CFS is just as serious a public health problem as AIDS.
6. Request that an annual international joint CFS & AIDS conference be held by the World Health Organization.
7. Suggest that next December 1st be declared the first “World AIDS/CFS Day.”
I stopped fighting for myself a long time ago. My fight is for humanity.
http://www.cfsstraightttalk.blogspot.com