1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS and Beating the Clock
For Jody Smith, the ticking of a clock was enough at one time to chase her back to her bed. But with the passage of time, she has been able to reclaim her living room ...
Discuss the article on the Forums.

Time for the Big Talk. How's the CAA doing?

Discussion in 'General ME/CFS News' started by hvs, Oct 26, 2009.

  1. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Amp and Speakers

    CAA should be our...
    amplifier: receiving raw signal (patients' voices), cleaning it up and fine-tuning it, then amplifying it
    ; and
    speakers: projecting it at decision-makers and health-care workers.

    Instead it's been generating it's own noise drowning out our voices.
  2. starryeyes

    starryeyes Senior Member

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    That's poignant Justin.
  3. Dolphin

    Dolphin Senior Member

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    Lapp on exercise, "couch potatoes", etc

    Charles Lapp has been involved in writing physician education programs:

    http://cfids.org/webinar/lapp-slides.pdf

    Sample quote:
    I think the phrase "couch potatoes" for ill and disabled people is insulting. And I don't think there is much evidence that most people do a lot less than they are capable of.

    He seems to have been taken in by the hype of exercise programs - from p.11:

    For this and other reasons, I am not convinced he (and Lucinda Bateman, as explained before) should be in charge of writing the management part of guidelines for ME/CFS.

    If you choose to attend them and want their advice on exercise, that is your business but education programs affect "everyone".
  4. Cort

    Cort Phoenix Rising Founder

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    Its unbelievable! That's a great stat by the way - lets keep that around.
  5. Cort

    Cort Phoenix Rising Founder

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    Wilddaisy this is so off the charts its unbelievable; Please modify this post - the CAA knows what CFS is, this is a strategic partnership not an attempt to characterize CFS as a pain disease. By the way a recent study showed that exercise increases pain sensitivity in CFS instead of decreasing it as it does in healthy people. If I was exercise regularly I would be in pain all the time - I assume most people with CFS would as well. Thats what exercise does to me. There's a difference between ranting and critiquing an organization.
  6. Cort

    Cort Phoenix Rising Founder

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    As was demonstrated earlier you'll have to throw Dr. Cheney, Dr. Klimas, Dr Enlander, Dr. Bested, Bruce Campbell, Staci Stevens and god knows who else in the 'not capable of writing management guidelines' for CFS in there. They all advocate very small amounts of exercise to keep the body as fit as possible with the confines of the illness.
  7. Cort

    Cort Phoenix Rising Founder

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    with
    The CFIDS Association has several times changed its policy in response to Forum members. Do you disagree with that? I would suggest that that would mean that your voice has not been drowned out. Agreed?
  8. Cort

    Cort Phoenix Rising Founder

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    By the way RNase L dysfunction, HHV6 activation in CFS, Natural killer cell abnormalities, abnormal HRV reading, low cortisol, POTS, metabolic dysfunction (repeat exercise studies), low blood volume, brain atrophy,...I could go on and on were all found in FUKUDA studies..... I wouldn't call those findings a waste of time.

    But anyway.....

    http://www.cfids.org/cfidslink/2010/010607.asp

  9. Dolphin

    Dolphin Senior Member

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    Well, let's talk specifics:

    Dr. Lapp merges CFS and FM. I don't think that is what you want in somebody writing management guidelines on ME/CFS.

    Dr. Lapp also says:

    The people involved in the trials in those reviews weren't severely affected people.

    The Whiting review said:
    Basically the evidence isn't very good.

    It also said:
    I can't seem to find the updated 2005 York review but it was the basis of the Chambers 2006 review which said:
    Basically the evidence isn't there for the severely affected.

    You might not have problems with what he advises and assumes is possible for the severely affected, but I and I know others who are severely affected, do.
  10. Dolphin

    Dolphin Senior Member

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    And yet we have guidelines which as I recall claim exercise will help pain, extrapolating from what happens with healthy people.

    Here's another study which found something similar
  11. Robin

    Robin Guest

    I think there's a big difference between advocating "small amounts of exercise" and calling someone a couch potato.

    Consider people like myself who are currently 95% bedridden (at times during my up and down cycle) and those who are 100% bedridden such as the late Lynn Gilderdale. People at this level of severity can't do much. Are we couch potatoes?

    Like Dolphin points out, I've yet to see evidence that there is a significant portion of people who are avoiding safe levels of activity out of fear. Otherwise, this type of talk shows a lack of understanding about the basics of the illness; as someone who so badly wants to have a more active life I really feel personally insulted by it.

    To clear things up, Bruce Campbell's philosophy is one of caution about activity. He actually advocates "underdoing" on good days (which surely goes some of the rhetoric we've seen on this thread). In his own words:

    He calls it "pre-emptive" resting, or resting when you don't have symptoms:

    It's part of his larger overall strategy of pacing.

    Finally:

    I doubt he would call anyone a "couch potato". Please don't put him in with Lapp and Levine.
  12. Dorothy

    Dorothy

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    Regarding Dr. Lapp's views on exercise - in 2004, he commented on the Cochrane Review and said it was "horrible" and even went so far as to say that Peter White (one of the Wessely school members) was biased. The commentary can be found at


    http://www.prohealth.com/library/bulletinarticle.cfm?ID=5931


    Perhaps his views have changed since 2004? Saying that people with ME/CFS "can and must" exercise is a bit much, at least for the sickest patients. I, too, don't like the "couch potato" term. Also, I don't think all patients can be shoehorned into either "push and crash" and "afraid to exercise" types. If I'm on the couch all day, it's because I'm too sick to do anything else. I'd much rather be moving around. Also, how can people with limited ATP due to mitochondrial issues continually increase their activity? You'd have to hit a plateau at some point unless you are actually getting well.

    On the other hand, Dr. Lapp isn't telling people to go out jogging - he advocates very very short intervals of activity that stay under the anaerobic threshold. To the extent that he's worried about people getting unneccessarily deconditioned, I would agree with him. But I'm just not convinced that overall exercise capacity can be significantly changed in the absence of something that addresses the underlying disease process (i.e. Ampligen, or maybe antiretrovirals for XMRV+ patients). Time to get back to my couch.
  13. Cort

    Cort Phoenix Rising Founder

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    Thanks Dolphin for all the info. I appreciate how much you've looked into this.

    I absolutely agree Robin - terrible term - he really is a very nice guy, I don't know why he used such a loaded term. That was a mistake.

    I think this is crucial point - nobody is saying that you can exercise your way out of this or engage in vigorous exercise. These are very mild prescriptions; if they can enhance your ability to engage in aerobic exercise at bit -its just a bit. My understanding is that this is about maintaining conditioning as best as possible - no more. In some case thats just doing little arm exercises.

    Enjoy your couch.
  14. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    CAA has made some changes to materials in response to forum comments. I do think our voice is being drowned out by the CAAs much different voice (that has sometimes been modified by our input).
  15. muffin

    muffin Senior Member

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    I liked the NIH.gov funding chart so much I pasted it here...CFIDS bolded

    Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC)

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

    Table Published: February 1, 2010

    This table displays the annual support level for various research, condition, and disease categories based on grants, contracts, and other funding mechanisms used across the National Institutes of Health (NIH).

    At the request of Congress, the NIH embarked on a process to provide better consistency and transparency in the reporting of its funded research. This new process, implemented in 2008 through the Research, Condition, and Disease Categorization (RCDC) system, uses sophisticated text data mining (categorizing and clustering using words and multiword phrases) in conjunction with NIH-wide definitions used to match projects to categories. The definitions are a list of terms and concepts selected by NIH scientific experts to define a research category. The research category levels represent the NIHs best estimates based on the category definitions.

    The NIH does not expressly budget by category. The annual estimates reflect amounts that change as a result of science, actual research projects funded, and the NIH budget. The research categories are not mutually exclusive. Individual research projects can be included in multiple categories so amounts depicted within each column of this table do not add up to 100 percent of NIH-funded research.

    Consistent with the Administrations emphasis on transparency, a separate column has been added to distinguish FY 2009 actual support funded from American Recovery & Reinvestment Act (ARRA) accounts from projects funded by regular NIH appropriations. FY 2010 estimates for ARRA reflect only follow-on commitments related to grants awarded in FY 2009.

    The FY 2006 and FY2007 data were produced from a reporting process historically used by NIH. The technical elements of the previous reporting process did not have the ability to produce uniform results and led to wide variability in the way research categories were coded. This process caused inconsistencies in reporting data. RCDC use of data mining improves the consistency and eliminates the wide variability in defining the research categories reported. The table shows historical data for FY2006 and FY2007 and data produced with the new RCDC methodology for FY2007 through FY2009. The FY 2010-2011 estimates are based on RCDC actual data.

    Total Number of Research/Disease Areas: 218

    Click here for instructions on how to use the data table below.



    Research/Disease Areas
    (Dollars in millions and rounded) FY 2006
    Actual FY 2007
    Actual

    NIH Historical Method 12/ FY 2007
    Actual

    NIH Revised Method 12/ FY 2008
    Actual FY 2009
    Actual

    (Non-ARRA) FY 2009
    Actual

    (ARRA) 13/ FY 2010
    Estimated

    (Non-ARRA) FY 2010
    Estimated

    (ARRA) 14/ FY 2011
    Estimated
    Acute Respiratory Distress Syndrome $74 $48 $87 $82 $103 $17 $106 $9 $109
    Agent Orange & Dioxin $17 $18 $15 $13 $13 $2 $14 - $14
    Aging $2,431 $2,462 $1,879 $1,965 $3,015 $554 $3,093 $363 $3,172
    Alcoholism $511 $521 $443 $452 $441 $75 $452 $48 $467
    Allergic Rhinitis (Hay Fever) $4 $5 $7 $6 $4 $1 $4 $1 $4
    ALS $44 $39 $40 $43 $43 $13 $44 $11 $45
    Alzheimer's Disease $643 $645 $411 $412 $457 $77 $469 $58 $480
    American Indians / Alaska Natives $155 $141 $159 $142 $169 $19 $173 $6 $177
    Anorexia $15 $12 $8 $7 $8 $2 $8 $2 $8
    Anthrax $150 $105 $160 $134 $102 $13 $105 $10 $108
    Antimicrobial Resistance $221 $269 $209 $228 $251 $52 $257 $24 $265
    Aphasia $15 $14 $20 $22 $22 $3 $22 $1 $23
    Arctic $17 $19 $25 $22 $28 $6 $29 $1 $29
    Arthritis $355 $339 $222 $232 $246 $65 $252 $35 $259
    Assistive Technology $182 $184 $192 $215 $249 $43 $256 $26 $262
    Asthma $283 $294 $252 $246 $284 $51 $292 $27 $300
    Ataxia Telangiectasia $9 $11 $14 $13 $13 $2 $13 $1 $13
    Atherosclerosis $337 $347 $468 $460 $495 $112 $508 $91 $522
    Attention Deficit Disorder (ADD) $116 $107 $61 $60 $71 $13 $73 $10 $75
    Autism $108 $127 $93 $118 $132 $64 $136 $52 $143
    Autoimmune Disease $598 $587 $759 $762 $879 $138 $899 $83 $923
    Basic Behavioral and Social Science $1,062 $1,104 $1,119 $1,149 $1,410 $206 $1,447 $129 $1,490
    Batten Disease $8 $8 $5 $5 $5 $2 $5 $1 $6
    Behavioral and Social Science $3,001 $3,060 $3,157 $3,215 $3,471 $582 $3,562 $401 $3,668
    Biodefense 1/ $1,766 $1,735 $1,735 $1,736 $1,755 $213 $1,794 $96 $1,853
    Bioengineering $1,546 $1,469 $2,610 $2,853 $3,155 $569 $3,229 $318 $3,318
    Biotechnology $9,974 $9,814 $5,344 $5,179 $5,619 $1,051 $5,750 $580 $5,911
    Brain Cancer $178 $193 $204 $194 $234 $42 $240 $22 $248
    Brain Disorders $4,732 $4,670 $3,592 $3,729 $3,538 $685 $3,630 $450 $3,733
    Breast Cancer $718 $707 $729 $726 $722 $111 $741 $47 $765
    Burden of Illness $508 $524 $60 $48 $43 $11 $44 $6 $46
    Cancer $5,575 $5,643 $5,549 $5,570 $5,629 $1,120 $5,781 $346 $6,036
    Cardiovascular $2,349 $2,370 $1,942 $2,027 $2,008 $396 $2,058 $298 $2,115
    Cerebral Palsy $18 $16 $30 $28 $21 $4 $22 $2 $22
    Cervical Cancer $97 $96 $67 $69 $84 $15 $86 $8 $89
    Charcot-Marie-Tooth Disease $7 $7 $9 $12 $14 $2 $15 $1 $15
    Child Abuse and Neglect Research $38 $38 $41 $30 $32 $5 $33 $4 $34
    Childhood Leukemia $53 $55 $50 $39 $47 $12 $48 $9 $50
    Chronic Fatigue Syndrome $5 $4 $4 $4 $5 $0 $5 - $5
    Chronic Liver Disease and Cirrhosis $408 $379 $253 $241 $274 $37 $280 $25 $287
    Chronic Obstructive Pulmonary Disease $67 $91 $72 $75 $96 $18 $98 $14 $101
    Climate Change $50 $47 $4 $4 $4 $2 $5 $2 $5
    Clinical Research $8,785 $9,116 $9,862 $9,629 $10,336 $1,854 $10,617 $921 $10,931
    Clinical Trials $2,767 $2,949 $3,422 $3,562 $2,966 $485 $3,041 $190 $3,132
    Colo-Rectal Cancer $269 $282 $273 $274 $281 $48 $288 $20 $297
    Comparative Effectiveness Research + - ** + $194 $246 $199 $162 $205
    Complementary and Alternative Medicine $301 $299 $426 $430 $513 $70 $526 $43 $541
    Conditions affecting unborn children $103 $110 $81 $81 $95 $8 $97 $4 $100
    Contraception/Reproduction $335 $314 $460 $473 $427 $65 $437 $31 $449
    Cooley's Anemia $42 $34 $22 $22 $21 $3 $22 $3 $22
    Cost Effectiveness Research $143 $155 $50 $49 $52 $16 $53 $14 $55
    Crohn's Disease $64 $69 $47 $51 $55 $14 $56 $9 $58
    Cystic Fibrosis $85 $82 $78 $90 $86 $13 $88 $9 $90
    Dental/Oral and Craniofacial Disease $413 $417 $484 $463 $490 $75 $503 $56 $515
    Depression $335 $345 $398 $402 $402 $48 $413 $20 $426
    Diabetes 2/ $1,038 $1,037 $1,069 $1,080 $1,030 $121 $1,052 $63 $1,078
    Diagnostic Radiology $712 $694 $1,046 $1,095 $976 $206 $1,000 $134 $1,027
    Diethylstilbestrol (DES) $8 $6 $5 $4 $4 $1 $4 - $4
    Digestive Diseases $1,252 $1,234 $1,460 $1,426 $1,538 $243 $1,577 $137 $1,623
    Digestive Diseases - (Gallbladder) $7 $6 $6 $7 $7 $1 $7 - $7
    Digestive Diseases - (Peptic Ulcer) $17 $23 $15 $14 $17 $3 $18 $2 $18
    Down Syndrome $14 $16 $16 $17 $18 $4 $19 $3 $19
    Drug Abuse (NIDA Only) 3/ $990 $1,001 $1,001 $1,007 $1,040 $135 $1,068 $113 $1,102
    Duchenne/ Becker Muscular Dystrophy $18 $23 $23 $22 $27 $6 $28 $4 $29
    Dystonia $19 $16 $18 $15 $16 $2 $17 $1 $17
    Eating Disorders 4/ + - ** + $26 $5 $27 $3 $27
    Emerging Infectious Diseases $1,857 $1,816 $1,733 $2,098 $2,080 $307 $2,129 $143 $2,194
    Emphysema $17 $21 $30 $29 $28 $11 $29 $9 $30
    Endometriosis $12 $12 $12 $15 $15 $2 $15 $1 $16
    Epilepsy $103 $105 $145 $145 $128 $21 $131 $15 $135
    Estrogen $153 $164 $283 $245 $235 $34 $241 $17 $248
    Eye Disease And Disorders Of Vision $705 $714 $800 $796 $862 $129 $933 $61 $956
    Facioscapulohumeral Muscular Dystrophy $2 $4 $3 $3 $3 $2 $4 $1 $4
    Fetal Alcohol Syndrome $29 $34 $32 $34 $34 $7 $35 $4 $36
    Fibroid Tumors (Uterine) $15 $14 $20 $16 $18 $2 $19 $1 $19
    Fibromyalgia $9 $9 $11 $12 $11 $2 $11 - $12
    Food Safety $316 $278 $230 $244 $262 $37 $268 $19 $276
    Fragile X Syndrome $20 $27 $22 $26 $27 $5 $28 $4 $29
    Frontotemporal Dementia (FTD) $33 $31 $17 $17 $22 $2 $22 $1 $23
    Gene Therapy $356 $325 $250 $249 $221 $28 $227 $18 $233
    Gene Therapy Clinical Trials $32 $31 $12 $16 $11 $0 $11 - $11
    Genetic Testing $417 $395 $402 $383 $316 $76 $324 $53 $334
    Genetics $4,878 $4,878 $7,000 $6,872 $7,278 $1,676 $7,459 $792 $7,676
    Global Warming Climate Change $58 $56 $1 $1 $3 $1 $3 $1 $3
    Health Disparities 5/ $2,766 $2,744 $2,744 $2,614 $2,806 $434 $2,887 - $2,970
    Health Effects of Climate Change $157 $164 $258 $286 $179 $35 $183 $17 $188
    Health Services $929 $1,023 $730 $743 $1,102 $316 $1,131 $190 $1,165
    Heart Disease $2,087 $2,126 $1,126 $1,217 $1,202 $227 $1,232 $161 $1,267
    Heart Disease - Coronary Heart Disease $398 $382 $379 $367 $426 $98 $437 $70 $450
    Hematology $1,114 $1,128 $881 $894 $908 $151 $931 $88 $959
    Hepatitis $177 $174 $176 $180 $178 $23 $182 $15 $187
    Hepatitis - A $3 $2 $6 $6 $4 $0 $4 - $5
    Hepatitis - B $36 $42 $53 $53 $51 $6 $52 $2 $54
    Hepatitis - C $122 $108 $100 $93 $97 $12 $100 $9 $102
    HIV/AIDS 6/ $2,902 $2,906 $2,906 $2,928 $3,019 $319 $3,086 - $3,184
    Hodgkin's Disease $21 $17 $12 $16 $26 $1 $27 $1 $28
    Homelessness $21 $18 $14 $13 $16 $3 $16 $3 $17
    Homicide and Legal Interventions $11 $8 $1 * $2 $1 $2 - $2
    HPV and/or Cervical Cancer Vaccines $14 $20 $16 $19 $25 $2 $26 $2 $27
    Human Fetal Tissue 7/ $23 $19 ** $40 $41 $22 $42 $18 $43
    Human Genome $1,065 $1,099 $1,246 $1,259 $1,775 $566 $1,820 $356 $1,875
    Huntington's Disease $48 $53 $49 $51 $57 $12 $58 $7 $60
    Hyperbaric Oxygen $2 $2 $3 $4 $3 $0 $4 - $4
    Hypertension $395 $390 $231 $263 $266 $41 $272 $29 $280
    Immunization $1,438 $1,342 $1,713 $1,734 $1,773 $191 $1,815 $80 $1,870
    Infant Mortality/ (LBW) $478 $464 $227 $246 $246 $32 $257 $18 $265
    Infectious Diseases $3,132 $3,059 $3,433 $3,575 $3,627 $526 $3,712 $251 $3,822
    Infertility $40 $51 $65 $73 $75 $17 $77 $13 $82
    Inflammatory Bowel Disease $72 $80 $74 $81 $91 $22 $92 $12 $95
    Influenza $207 $271 $280 $204 $316 $46 $327 $13 $337
    Injury - Childhood Injuries $28 $27 $28 $26 $33 $3 $34 $2 $35
    Injury - Trauma - (Head and Spine) $233 $219 $164 $150 $161 $33 $165 $19 $170
    Injury - Traumatic brain injury $85 $82 $73 $59 $71 $15 $73 $8 $75
    Injury - Unintentional Childhood Injury $25 $21 $17 $15 $19 $1 $19 - $20
    Injury (total) Accidents/Adverse Effects $355 $403 $299 $299 $340 $58 $348 $30 $358
    Interstitial Cystitis $25 $23 $10 $10 $11 $1 $12 - $12
    Kidney Disease $434 $450 $531 $523 $570 $85 $585 $39 $601
    Lead Poisoning $15 $15 $13 $9 $11 $3 $11 - $11
    Liver Cancer $88 $90 $103 $89 $94 $12 $96 $7 $99
    Liver Disease $450 $423 $589 $562 $572 $79 $587 $48 $603
    Lung $978 $1,013 $1,169 $1,211 $1,265 $234 $1,297 $142 $1,335
    Lung Cancer $266 $249 $164 $169 $178 $36 $183 $20 $188
    Lupus $97 $84 $113 $126 $115 $19 $118 $11 $121
    Lyme Disease $24 $22 $26 $22 $25 $5 $25 $3 $26
    Lymphoma $170 $158 $186 $193 $184 $22 $188 $13 $194
    Macular Degeneration $60 $70 $135 $135 $85 $8 $87 $3 $89
    Malaria $98 $104 $112 $132 $110 $11 $112 $6 $116
    Malaria Vaccine $35 $36 $31 $32 $34 $3 $35 $2 $36
    Mental Health $1,824 $1,853 $2,061 $2,086 $2,129 $382 $2,185 $250 $2,252
    Mental Retardation (Intellectual and Developmental Disabilities (IDD)) $188 $204 $305 $350 $281 $94 $288 $71 $297
    Methamphetamine $45 $45 $66 $67 $69 $13 $70 $13 $72
    Mind and Body $136 $133 $571 $567 $494 $90 $507 $75 $521
    Minority Health 5/ $2,423 $2,407 $2,407 $2,396 $2,592 $378 $2,667 - $2,743
    Mucopolysaccharidoses (MPS) $10 $10 $8 $7 $7 $0 $7 - $7
    Multiple Sclerosis $110 $98 $149 $169 $137 $25 $140 $13 $144
    Muscular Dystrophy $40 $47 $58 $56 $66 $17 $68 $10 $70
    Myasthenia Gravis $9 $6 $10 $9 $9 $3 $9 - $9
    Myotonic Dystrophy $7 $8 $9 $9 $9 $4 $10 $2 $10
    Nanotechnology 8/ $192 $215 $257 $304 $343 $73 $361 $42 $382
    Networking and Information Technology R&D 8/ $423 $507 $959 $911 $1,174 $168 $1,201 $77 $1,235
    Neurodegenerative $1,217 $1,166 $1,579 $1,621 $1,553 $262 $1,593 $169 $1,633
    Neurofibromatosis $16 $13 $12 $14 $17 $2 $17 $1 $18
    Neuropathy $54 $59 $118 $121 $119 $13 $123 $9 $126
    Neurosciences $4,830 $4,809 $5,102 $5,224 $5,320 $848 $5,456 $513 $5,605
    Nutrition $1,039 $1,075 $1,327 $1,391 $1,400 $205 $1,435 $108 $1,475
    Obesity $594 $661 $595 $664 $745 $117 $763 $68 $784
    Organ Transplantation $363 $358 $187 $175 $139 $32 $142 $10 $146
    Orphan Drug $1,255 $1,158 $653 $645 $441 $118 $453 $55 $467
    Osteogenesis Imperfecta $5 $5 $8 $5 $5 $1 $6 - $6
    Osteoporosis $169 $164 $167 $183 $198 $21 $203 $10 $209
    Otitis Media $17 $15 $20 $18 $15 $7 $16 $2 $16
    Ovarian Cancer $102 $103 $89 $96 $102 $13 $105 $6 $108
    Paget's Disease $6 $4 $1 $1 $1 $1 $1 - $1
    Pain Conditions - Chronic $220 $224 $277 $279 $333 $53 $341 $31 $350
    Parkinson's Disease $208 $187 $143 $152 $162 $24 $166 $16 $171
    Pediatric $3,161 $3,173 $2,622 $2,771 $2,996 $505 $3,073 $308 $3,166
    Pediatric AIDS 9/ $276 $262 $262 $241 $227 $20 $233 - $241
    Pediatric Research Initiative $141 $171 ** $209 $214 $256 $219 $205 $226
    Pelvic Inflammatory Disease $4 $3 $4 $3 $3 $1 $3 $1 $3
    Perinatal - Birth - Preterm (LBW) $374 $351 $181 $197 $177 $23 $181 $15 $186
    Perinatal - Neonatal Respiratory Distress Syndrome $8 $9 $23 $18 $31 $5 $31 $3 $32
    Perinatal Period - Conditions Originating in Perinatal Period $407 $387 $413 $449 $470 $65 $482 $37 $495
    Pick's Disease $1 $1 $3 $2 $2 $0 $2 - $2
    Pneumonia $145 $132 $105 $93 $108 $15 $110 $8 $114
    Pneumonia & Influenza $351 $405 $382 $295 $392 $58 $402 $21 $414
    Polycystic Kidney Disease $32 $36 $33 $41 $38 $7 $39 $4 $40
    Prevention $6,815 $6,729 $4,596 $4,623 $5,332 $844 $5,465 $475 $5,626
    Prostate Cancer $348 $345 $295 $290 $310 $47 $319 $26 $329
    Psoriasis $8 $10 $22 $8 $13 $3 $13 $2 $14
    Regenerative Medicine $614 $575 $697 $723 $799 $144 $818 $90 $841
    Rehabilitation $324 $344 $379 $403 $404 $75 $415 $56 $446
    Rett Syndrome $5 $6 $6 $9 $9 $4 $10 $2 $10
    Reye's Syndrome $1 $1 $0 $0 $0 $0 - - -
    Rural Health $202 $208 $173 $170 $186 $42 $190 $21 $196
    Schizophrenia $364 $358 $220 $249 $265 $85 $272 $44 $280
    Scleroderma $11 $12 $12 $20 $21 $2 $22 $1 $22
    Septicemia $49 $49 $93 $95 $92 $19 $94 $10 $97
    Sexually Transmitted Diseases/Herpes $264 $288 $282 $245 $250 $43 $256 $25 $264
    Sickle Cell Disease $91 $94 $78 $80 $63 $14 $64 $10 $66
    Sleep Research $199 $190 $219 $225 $217 $33 $223 $19 $229
    Small Pox $149 $122 $142 $94 $94 $4 $96 $3 $99
    Smoking and Health $517 $534 $324 $310 $329 $78 $338 $46 $358
    Spina Bifida $11 $9 $14 $15 $14 $3 $14 $2 $14
    Spinal Cord Injury $66 $64 $90 $80 $80 $14 $82 $8 $84
    Spinal Muscular Atrophy $15 $11 $11 $10 $11 $3 $11 $3 $12
    Stem Cell Research $643 $657 $968 $938 $1,044 $187 $1,070 $112 $1,100
    Stem Cell Research - Embryonic - Human 10/ $38 $42 $74 $88 $120 $23 $123 $14 $126
    Stem Cell Research - Embryonic - Non-Human $110 $106 $120 $150 $148 $29 $151 $10 $155
    Stem Cell Research - Nonembryonic - Human $206 $203 $226 $297 $339 $58 $348 $40 $358
    Stem Cell Research - Nonembryonic - Non-Human $289 $306 $400 $497 $550 $88 $564 $52 $580
    Stem Cell Research - Umbilical Cord Blood/ Placenta $19 $22 $44 $46 $49 $10 $50 $7 $52
    Stem Cell Research - Umbilical Cord Blood/ Placenta - Human $16 $19 $38 $38 $42 $9 $43 $7 $45
    Stem Cell Research - Umbilical Cord Blood/ Placenta - Non-Human $4 $2 $9 $9 $10 $1 $10 - $11
    Stroke $342 $340 $288 $296 $329 $54 $338 $35 $347
    Substance Abuse 11/ $1,490 $1,523 $1,636 $1,763 $1,653 $245 $1,697 $180 $1,750
    Sudden Infant Death Syndrome $77 $81 $25 $29 $22 $6 $22 $2 $23
    Suicide $32 $43 $52 $39 $36 $15 $37 $3 $38
    Teenage Pregnancy $21 $16 $24 $21 $23 $5 $23 $3 $24
    Temporomandibular Muscle/Joint Disorder (TMJD) $17 $15 $18 $19 $15 $1 $15 $1 $15
    Tobacco $515 $536 $325 $311 $331 $78 $340 $46 $360
    Topical Microbicides $88 $99 $92 $102 $92 $7 $124 $1 $130
    Tourette Syndrome $13 $11 $9 $8 $7 $3 $7 - $7
    Transmissible Spongiform Encephalopathy (TSE) $35 $43 $50 $44 $43 $4 $44 $1 $46
    Transplantation $551 $534 $544 $519 $571 $94 $585 $48 $601
    Tuberculosis $150 $166 $188 $142 $189 $27 $195 $14 $199
    Tuberculosis Vaccine $22 $17 $23 $18 $15 $3 $15 $2 $16
    Tuberous Sclerosis $9 $12 $20 $20 $20 $3 $20 $2 $21
    Urologic Diseases $536 $526 $535 $534 $578 $81 $594 $39 $612
    Uterine Cancer $28 $22 $24 $16 $25 $4 $26 $3 $27
    Vaccine Related $1,449 $1,358 $1,659 $1,632 $1,593 $185 $1,631 $77 $1,680
    Vaccine related (AIDS) 9/ $566 $597 $597 $556 $561 $35 $567 - $603
    Vector-Borne Diseases $464 $424 $478 $417 $401 $66 $411 $38 $423
    Violence Against Women $20 $24 $49 $45 $39 $2 $40 $2 $41
    Violence Research $113 $106 $190 $183 $182 $21 $187 $16 $192
    Vulvodynia + - ** + $1 $1 $1 $1 $1
    West Nile Virus $85 $69 $81 $39 $59 $7 $61 $4 $63
    Women's Health 5/ $3,498 $3,470 $3,470 $3,514 $3,725 $506 $3,822 - $3,930
    Youth Violence $67 $60 $123 $115 $111 $12 $114 $9 $118

    [*] The minimum reporting threshold for a specific disease/condition is $500,000. Reporting of $0 does not indicate that no research is being conducted.
    [**] No methodology was identified for RCDC in 2007; therefore there is no data available under the FY 2007 Actual column.
    [+] Indicates a new category. Funding support data not available prior to the actual FY 2009 level reported.
    1/ Reporting for this category does not follow the standard RCDC process. The total amount reported is consistent with reporting requirements for this category to the U.S. Office of Management & Budget (OMB). The project listing does not include non-project or other support costs associated with the annual total for this category. Additional information on this category is available at http://www.niaid.nih.gov/topics/biodefenserelated/pages/default.aspx.
    2/ Includes research funded from the Type 1 diabetes appropriation of $150,000,000. These are project listings only.
    3/ Reporting for this category does not follow the standard RCDC process. Spending is reported consistent with U.S. Office of National Drug Control Policy (ONDCP) requirements (Only NIDA). More information on this area is available at http://www.drugabuse.gov/drugpages/.
    4/ Reported total for this category encompasses research for anorexia, bulimia nervosa, binge eating disorders, and eating disorders not otherwise specified.
    5/ Reporting for this category does not follow the standard RCDC process. This category assigns project funding according to populations tracked by gender or ethnicity. The databases used to track gender/ethnicity are complex and not currently compatible with the RCDC system.
    6/ Reporting for this category does not follow the standard RCDC process. These are project listings only and non-project or other support costs associated with the annual total for the category are not included. More information on this area is available at http://www.oar.nih.gov/.
    7/ Reporting for this category does not follow the standard RCDC process. This category uses a non-standard approach involving subject matter expert reviews of manually collected project listings.
    8/ The data provided reflects funding amounts reported by the NIH RCDC process for this category. Actual and estimate levels presented on this site supersede FY 2009-2011 amounts detailed in OMB MAX DE application tables that were based on preliminary FY 2009 funding support information.
    9/ Reporting for this category does not follow the standard RCDC process. These are project listings only and non-project or other support costs associated with the annual total for the category are not included. More information on the budget associated with the category is available at http://www.oar.nih.gov/. Research reported for this category is also captured under the broader HIV/AIDS category.
    10/ Human embryonic stem cell research projects awarded with restrictions may have been included in the FY2009 report.
    11/ Reporting for this category does not follow the standard RCDC process. This category includes all spending reported under the Drug Abuse category as well as projects categorized under the broader area of Substance Abuse. These are project listings only. More information on this area is available at http://www.drugabuse.gov/drugpages/.
    12/ To illustrate the effect of the RCDC methodology change, the table shows a side-by-side comparison of FY 2007 levels produced with the prior method (NIH Historical Method) compared with levels that would have resulted if the new methodology had been implemented (NIH Revised Method). NIH Historical Method figures are considered the official Actual for FY 2007. The NIH Revised Method levels provide for comparability to FY 2008 RCDC actuals.
    13/ A separate column added to distinguish FY 2009 actual support funded from American Recovery & Reinvestment Act (ARRA) accounts from projects funded by regular recurring NIH appropriations.
    14/ FY 2010 estimates for ARRA reflect only follow-on commitments related to grants awarded in FY 2009. Obligations associated with potential exercise of option years for contracts let in 2009 or new contracts as well as award of new competing grants are not included.
  16. Cort

    Cort Phoenix Rising Founder

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    Justin, if the CAA is making change relative to Forum requests then your voice is not being drowned out. You can't expect them or anybody else to agree to every request that you have. I, for one, disagree with many of your requests.
  17. flex

    flex *****

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    London area
  18. Cort

    Cort Phoenix Rising Founder

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    It depends on what your focus is.

    First of all I disagree with Justin's assessments of the CAA.

    Secondly, even if I did, if I saw a 10 pack a day smoker cut down to 5 packs or one pack I would aknowledge that and encourage them to keep improving rather than ignoring that it happened. Part of it comes down to what you're committed to? Are you committing to fostering a relationship that acknowledges the worthiness of both parties and proceeds in that fashion? Or are you committed to being right that whoever you're dealing with is a 'smoker' or whatever.

    It does feel good to be 'right', to be kind of righteous - its a powerful feeling but it just sets up opposing sides and nothing gets done. If I was the CFIDS Association and, after changing several things to accommodate some peoples concerns and then saw that post - I would just throw up my hands.

    I would rather form a relationship that treats everybody with respect.
  19. Cort

    Cort Phoenix Rising Founder

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    That is one of the most effective graphics I've ever seen. Look at all those big numbers surrounding that little number......I'll bet a graphic designer could really do something with that.
  20. flex

    flex *****

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    London area
    [​IMG]


    Smoking kills!!

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