CDC and NIH Funding

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Wow...

350 mio on prostate cancer, 5 mio on ME/CFS...

One perspective is very impressive. Lets assume 1 mio ME/CFS sufferers in the US, that would make $5 per capita per year. And then assume economic costs of $50.000 per patient...
 

eric_s

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I think those figures are very important. No matter what the Alter paper will look like (it will only change the arguments), this far we always got disproportionately little funding and this has to change.
Only research can help us and research obviously needs to be funded.
So we should get funding that is proportional to the seriousness of CFS (number of people affected, gravity and costs it creates).

I think we should try to get those numbers as exact as possible (funding for CFS and costs CFS creates for the economy).
If we can show the public and politicians that we don't get as much as we should (compared to others) and that not helping us is expensive, this might help change things.

Does the CAA have those numbers? I think this is something they (and any advocacy organization) should do, gather that sort of information.
 
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The Economic impact of ME/CFS: Individual and societal costs
http://www.dynamic-med.com/content/7/1/6
Leonard A Jason1, Mary C Benton2, Lisa Valentine3, Abra Johnson1 and Susan Torres-Harding4



Using ME/CFS prevalence data of 0.42 and indirect costs estimates from Reynolds et al. (2004), the direct and indirect cost of ME/CFS to society was estimated to be $18,677,912,000 for the community sample and $23,972,300,000 for the tertiary sample. These findings indicate that whether or not individuals are recruited from a community or tertiary sample, ME/CFS imposes substantial economic costs.
 

muffin

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http://report.nih.gov/rcdc/categories/ will find more

http://report.nih.gov/rcdc/categories/

Trans-NIH Chronic Fatigue Syndrome Research: NIH coordinates chronic fatigue syndrome research through a trans-NIH Working Group on Research on Chronic Fatigue. This working group developed an action plan to enhance the status of chronic fatigue syndrome research at the NIH and among the external and intramural scientific communities. The working group held a workshop on grantsmanship in FY 2007 to provide researchers with an overview of funding opportunities, an understanding of the NIH funding process, and an opportunity to meet with program officials. In addition, the Office of Research on Womens Health and a subset of the working group ICs issued an RFA in FY 2006 to explicate how the brain, as the mediator of the various body systems involved, fits into the schema for understanding chronic fatigue syndrome. This RFA solicited proposals from multidisciplinary teams of scientists to develop an interdisciplinary approach to the study of chronic fatigue syndrome in men and women across the lifespan and resulted in seven new research projects on chronic fatigue syndrome.
For more information, see http://orwh.od.nih.gov/cfs.html
For more information, see http://grants.nih.gov/grants/guide/rfa-files/RFA-OD-06-002.html
For more information, see http://orwh.od.nih.gov/cfs/2006NIHfundedCFSstudies.html
For more information, see http://orwh.od.nih.gov/cfs/cfsFundingGMWs.html
This example also appears in Chapter 2: Chronic Diseases and Organ Systems.
(E) (ORWH, NIAID, NIAMS, NIAAA, NIA, NICHD, NIDA, NIDDK, NINDS, NCRR, CSR, NIEHS, NIDCR, NINR, NHLBI, NIMH, NCCAM, FIC, ODS, OBSSR)
http://orwh.od.nih.gov/cfs.html
NIH Funded CFS Research
Overview
The following is a compilation of abstracts of NIH grants directly related to CFS. Abstracts are taken from the CRISP database. Most NIH grants are funded for more than one year. Thus, a particular abstract usually appears more than once in this list.
CFS-related grants for the years 1999 - 2004 primarily involve the following topics:
CFS and the cardiovascular system, including neurally mediated hypotension and orthostatic intolerance, as well as clinical trials of medications to treat these conditions. Grants in this category also cover other aspects of potential circulatory dysfunction in CFS, such as muscle blood flow and venous dysfunction.
The epidemiology of CFS, including incidence in community samples, twin studies and CFS in adolescents.
Immunology of CFS, including mechanisms of immunologically mediated fatigue, and involvement of natural killer cells and inflammatory factors.
Neurobiology of CFS, including pathophysiology.
Psychological aspects of CFS, including studies of psychiatric co morbidities and efficacy of cognitive behavior therapy.
CFS Cooperative Research Centers, emphasizing integrated multi-faceted research programs, including studies of the immunology, neurophysiology and genetics of CFS.
Other aspects of CFS, including studies of physiological parameters, virology and sleep disturbance.
Microarrays and Proteomics in MZ Twins discordant for CFS
NIH-Funded CFS Research
2006
 

muffin

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DHHS numbers, link included

http://report.nih.gov/rcdc/categori...?FY=2009&ARRA=N&DCat=Chronic Fatigue Syndrome


Project Listing by Category

category
FY
Funding IC
Project Number
Sub Project #
Project Title
PI Name
Org Name
State / Country
Amount

Chronic Fatigue Syndrome 2009 NIAID 5R01AI065723-03 Immunologic Mechanisms, Biomarkers and Subsets in Chronic Fatigue Syndrome (CFS) FLETCHER, MARY UNIVERSITY OF MIAMI SCHOOL OF MEDICINE FL $375,233
Chronic Fatigue Syndrome 2009 NINR 5R01NR010229-02 Fatigue Self-Management in Primary Care: Efficacy, Credibility, and Economics FRIEDBERG, FRED STATE UNIVERSITY NEW YORK STONY BROOK NY $230,603
Chronic Fatigue Syndrome 2009 NHLBI 5R01HL087803-02 Vascular Dysfunction in CFS STEWART, JULIAN NEW YORK MEDICAL COLLEGE NY $385,700
Chronic Fatigue Syndrome 2009 NIEHS 5R01ES015382-04 Proteomics of Cerebrospinal Fluid in Chronic Fatigue Syndrome BARANIUK, JAMES GEORGETOWN UNIVERSITY DC $366,587
Chronic Fatigue Syndrome 2009 NCCAM 5R21AT004537-02 Pilot Study of Alternative Treatments of Unexplained Chronic Fatigue HARTZ, ARTHUR UNIVERSITY OF UTAH UT $263,375
Chronic Fatigue Syndrome 2009 NHLBI 5R01HL059459-10 Orthostatic Intolerance in CFS FREEMAN, ROY BETH ISRAEL DEACONESS MEDICAL CENTER MA $412,046
Chronic Fatigue Syndrome 2009 OD 5R01NS055672-04 Cognitive Behavioral Stress Management for Chronic Fatigue Syndrome ANTONI, MICHAEL UNIVERSITY OF MIAMI CORAL GABLES FL $343,219
Chronic Fatigue Syndrome 2009 NIAMS 5R01AR053821-03 HERV-K18 as a Risk Factor for CFIDS HUBER, BRIGITTE TUFTS UNIVERSITY BOSTON MA $146,621
Chronic Fatigue Syndrome 2009 OD 5R01AR053821-03 HERV-K18 as a Risk Factor for CFIDS HUBER, BRIGITTE TUFTS UNIVERSITY BOSTON MA $164,058
Chronic Fatigue Syndrome 2009 OD 5R01NS055670-04 Autonomic Nervous System in Chronic Fatigue Syndrome BIAGGIONI, ITALO VANDERBILT UNIVERSITY TN $383,438
Chronic Fatigue Syndrome 2009 NIAID 1R01AI078234-01A2 New Strategies to Decipher the Pathophysiology of Chronic Fatigue Syndrome MIKOVITS, JUDY WHITTEMORE PETERSON INSTITUTE NV $335,600
Chronic Fatigue Syndrome 2009 NHLBI 1F30HL097380-01 Inhibition of NO Dependent Splanchnic Hyperemia Improves CFS/POTS OCON, ANTHONY NEW YORK MEDICAL COLLEGE NY $27,784
Chronic Fatigue Syndrome 2009 NINDS 1R13NS066634-01 From Infection to Neurometabolism: A Nexus for CFS WITKOWSKI, JAN COLD SPRING HARBOR LABORATORY NY $25,000
Chronic Fatigue Syndrome 2009 OD 1R13NS066634-01 From Infection to Neurometabolism: A Nexus for CFS WITKOWSKI, JAN COLD SPRING HARBOR LABORATORY NY $10,000
Chronic Fatigue Syndrome 2009 NIDDK 5U01DK082345-02 0002 Pain and Sensory Processing in IC/PBS and Fibromyalgia WILLIAMS, DAVID UNIVERSITY OF MICHIGAN AT ANN ARBOR MI $328,680
Chronic Fatigue Syndrome 2009 NCRR 5M01RR023942-03 7301 PROTEOMICS OF CEREBROSPINAL FLUID IN CFS BARANIUK, JAMES GEORGETOWN UNIVERSITY DC $178,703
Chronic Fatigue Syndrome 2009 NCRR 5M01RR023942-03 7317 CNDP1 IN GWI (CARNOSINE DIPEPTIDASE 1 - GULF WAR ILLNESS) BARANIUK, JAMES GEORGETOWN UNIVERSITY DC $14,677
Chronic Fatigue Syndrome 2009 NCRR 5M01RR000071-46 7864 EFFECTS OF AEROBIC EXERCISE ON COGNITION, MOOD AND FATIGUE FOLLOWING TBI ASHMAN, TERESA MOUNT SINAI SCHOOL OF MEDICINE OF NYU NY $2,692
Chronic Fatigue Syndrome 2009 NCRR 5G12RR003020-25 5373 HHV-6 INHIBITION: IMPLICATIONS IN CHRONIC FATIGUE SPENCER, SHAWN FLORIDA AGRICULTURAL AND MECHANICAL UNIV FL $146,610
Chronic Fatigue Syndrome 2009 NCRR 3P20RR011145-14S2 6918 CLINICAL TRIAL: USE OF VIAGRA TO ALTER SYMPTOMS IN PTS WITH CFS FRIEDMAN, THEODORE CHARLES R. DREW UNIVERSITY OF MED & SCI CA $1,597
Chronic Fatigue Syndrome 2009 NCI 1ZIABC005725-18 Complex Human Diseases - From Gene to Function to Therapy DEAN, MICHAEL NIH $701,821



Home > Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC) > Project Listing by Category


Project Listing by Category
Click the column headings to sort project listings.
Category
FY
Funding IC
Project Number
Sub Project #
Project Title
PI Name
Org Name
State / Country
Amount

Chronic Fatigue Syndrome 2008 NIAID 5R01AI065723-02 Immunologic Mechanisms, Biomarkers and Subsets in Chronic Fatigue Syndrome (CFS) FLETCHER, MARY UNIVERSITY OF MIAMI SCHOOL OF MEDICINE FL $375,233
Chronic Fatigue Syndrome 2008 NHLBI 1R01HL087803-01A1 Vascular Dysfunction in CFS STEWART, JULIAN NEW YORK MEDICAL COLLEGE NY $376,313
Chronic Fatigue Syndrome 2008 NINR 1R01NR010229-01A1 Fatigue Self-Management in Primary Care: Efficacy, Credibility, and Economics FRIEDBERG, FRED STATE UNIVERSITY NEW YORK STONY BROOK NY $230,603
Chronic Fatigue Syndrome 2008 NCCAM 1R21AT004537-01 Pilot Study of Alternative Treatments of Unexplained Chronic Fatigue HARTZ, ARTHUR UNIVERSITY OF UTAH UT $188,125
Chronic Fatigue Syndrome 2008 NIEHS 5R01ES015382-03 Proteomics of Cerebrospinal Fluid in Chronic Fatigue Syndrome BARANIUK, JAMES GEORGETOWN UNIVERSITY DC $366,587
Chronic Fatigue Syndrome 2008 NINR 5R21NR010539-02 Behavioral Insomnia Treatment in Chronic Fatigue Syndrome KRYSTAL, ANDREW DUKE UNIVERSITY NC $188,345
Chronic Fatigue Syndrome 2008 OD 5R01NS055670-03 Autonomic Nervous System in Chronic Fatigue Syndrome BIAGGIONI, ITALO VANDERBILT UNIVERSITY TN $365,169
Chronic Fatigue Syndrome 2008 OD 5R01NS055672-03 Cognitive Behavioral Stress Management for Chronic Fatigue Syndrome ANTONI, MICHAEL UNIVERSITY OF MIAMI CORAL GABLES FL $327,582
Chronic Fatigue Syndrome 2008 NIAMS 5R01AR053821-02 HERV-K18 as a Risk Factor for CFIDS HUBER, BRIGITTE TUFTS UNIVERSITY BOSTON MA $149,538
Chronic Fatigue Syndrome 2008 OD 5R01AR053821-02 HERV-K18 as a Risk Factor for CFIDS HUBER, BRIGITTE TUFTS UNIVERSITY BOSTON MA $160,777
Chronic Fatigue Syndrome 2008 NHLBI 2R01HL059459-09A1 Orthostatic Intolerance in CFS FREEMAN, ROY BETH ISRAEL DEACONESS MEDICAL CENTER MA $412,046
Chronic Fatigue Syndrome 2008 NIDDK 1U01DK082345-01 0002 Pain and Sensory Processing in IC/PBS and Fibromyalgia WILLIAMS, DAVID UNIVERSITY OF MICHIGAN AT ANN ARBOR MI $328,680
Chronic Fatigue Syndrome 2008 NCRR 5M01RR000071-45 8240 MRS NEUROMETABOLITES IN CHRONIC FATIGUE SYNDROME, GAD AND HEALTHY VOLUNTEERS MATHEW, SANJAY MOUNT SINAI SCHOOL OF MEDICINE OF NYU NY $14,840
Chronic Fatigue Syndrome 2008 NCRR 5M01RR010710-11 8385 CLINICAL TRIAL: PSYCHIATRIC COMORBIDITY IN CHRONIC FATIGUE SYNDROME FRIEDBERG, FRED STATE UNIVERSITY NEW YORK STONY BROOK NY $940
Chronic Fatigue Syndrome 2008 NCRR 5P20RR011145-14 7085 CLINICAL TRIAL: USE OF VIAGRA TO ALTER SYMPTOMS IN PTS WITH CFS FRIEDMAN, THEODORE CHARLES R. DREW UNIVERSITY OF MED & SCI CA $19,164


 

muffin

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V99

If you saw Viagra for funding I would just NOT be surprised. You know that men do the funding and research and that that THANG :victory: ;) of theirs is so important to them. I am blown away by the number of ED meds on the market and on our TV stations where kids can ask (and my niece, of course, just HAD to ask about them). You would think that issue was an epidemic! People don't get that nature has specific plans on when we should mate and when we should not mate (older ages due to the issues that nature hands us).

The US has its priorities so mixed up right now. Too much. Too upsetting. Spend money on things like Viagra yet kids don't have teachers, and we don't have firefighters, police, etc. and people are jobless. I think I must be on some strange planet where everything is so mixed up and messed up!!!

Miss BSing with you!!!! Big HUGS!!!!!! Muff :sofa:
 

eric_s

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I've never heard of that problem, seriously :cool: but i don't know many PWCs outside of this forum. And probably no one would talk about it.
But just to be fair, probably women would want treatment too, if an illness for whatever reason would make them feel less like a woman.
But ok, it's really quite strange to do a study :D Btw it says symptoms, maybe it has some beneficial side effects, and that was studied as well.
 
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I wonder if they are trying to change the mood of patients. (And because I know journalists are reading these threads - we don't all have mood problems, and they have tried it before, it doesn't affect the underlying disease)
 

biophile

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The lack of funding, despite the relatively large numbers of sufferers and the massive drain on society, is not only disgusting but also irrational. There needs to be a huge increase in funding for all areas of ME/CFS research. If XMRV turns out to be "it", there will be no longer be any excuse for the government recalcitrance and the medical curmudgeons.
 

eric_s

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I wonder if they are trying to change the mood of patients. (And because I know journalists are reading these threads - we don't all have mood problems, and they have tried it before, it doesn't affect the underlying disease)
I don't think there is a "they". As you say, it does not make you better. I've never tried drugs for CFS but i don't think it makes sense if you feel good but are getting worse and worse, because you do more than is good for you. At some point you will have to face reality or crash.
 

eric_s

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The lack of funding, despite the relatively large numbers of sufferers and the massive drain on society, is not only disgusting but also irrational. There needs to be a huge increase in funding for all areas of ME/CFS research.
I agree and i think that's the point we have to make. Back that up with numbers of as good as possible quality and communicate it to people so that everybody knows about it. And in a clear and simple enough way.
If the XMRV connection is proven, it will be much easier and the arguments will be a bit different.
 
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This is an issue we plan to address in the ad. But we will have to say it in one sentence. I made a sentence on that. But I think it can be better. I expect the other PR advisors will find the most powerful way to say it.

Plus, I personally am concerned on how to make the point without minimizing other illnesses. For example, people do die of prostate cancer. So I know a strong point is made by comparing. But, we want to win over the public, including those with other illnesses. So we don't need to say "We deserve as much as they do."

I know Dr. Klimas made such a contrast with erectile dysfunction. I think her point was appropriate, especially in the venue it was in, a feminist magazine. And, as a researcher, she was in a good position to make that point.

But, we are trying to get support from public, particularly middle-aged powerful men. If our primary message is to government folks, they will understand figures such as "cost the economy ______________ annually." Although, it means nothing to me. You could say $18 billion or $500 billion and I can't wrap my mind around either one. But that is their language; they sit and figure nationwide figures every day. Reporters also talk that language also, and we want spur news media coverage.

And Muffin, I think I see a particular talent you can offer the campaign besides what you are already doing. We need fact checkers. I can help with because I was a news editor, I will be very nit picky and lobby for specifically accurate in the wording. I also can look for how a news reporter will challenge it. Evidently you can help with understanding government documents, and we have some researchers that are in discussion with us.

Thank you guys. I love the feedback. Helps us know what direction you want us to go.

Tina
 
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I would say that we need to highlight how research funding is different for ME/CFS.

Right now the amount a disease gets is based on number of patients, and severity of the disease. Well, both of those would equal tons of research funding. So where is the rest of the money. Where are the millions that match the numbers and severity?