research funds, where are they?, start screaming now!

Discussion in 'Fibromyalgia Main Forum' started by planegirl2, Dec 6, 2002.

  1. planegirl2

    planegirl2 New Member

    ok, so you dont want to be heard, read this and be ready to scream, we need to be heard, we are on the bottom of the list for research funds, read it for yourself,,,,cfs and fms are the lowest funded of all, NATIONAL INSTITUTES OF HEALTH
    Research Initiatives/Programs of Interest
    (Dollars in millions) FY2001 FY 2002 FY 2003
    Research/Disease Areas Actual $ Estimate $ Estimate $
    Aging Research 1,667.4 1,878.2 2,039.6
    AIDS (Budget Authority) 2,247.0 2,515.0 2,770.0
    Minority AIDS 439.5 487.9 535.8
    Pediatric AIDS 272.8 296.8 319.1
    Vaccines AIDS 269.2 339.5 422.3
    ALS 27.5 30.0 32.3
    Alzheimer's Disease 524.9 594.7 644.0
    Anthrax Research 7.3 42.1 287.4
    Arthritis Research 278.1 316.2 342.6
    Asthma 208.8 233.7 255.6
    Autism 55.8 65.1 70.5
    Autoimmune Disease 495.1 563.4 608.6
    Behavioral and Social Science 2,100.6 2,364.0 2,575.2
    Bioengineering 692.4 792.5 960.6
    Bioterrorism* 52.8 274.5 1,747.9
    Brain Disorders 3,916.5 4,437.7 4,809.1
    Cancer Research 4,376.4 4,929.8 5,558.8
    Breast Cancer 580.9 655.2 732.3
    Lung Cancer 225.6 259.2 297.0
    Ovarian Cancer 90.3 104.0 118.9
    Prostate Cancer 320.1 362.1 408.3
    Cardiovascular Research 1,723.1 1,920.8 2,064.6
    Clinical Research 6,433.3 7,235.7 8,037.3
    Complementary and Alternative Medicine 212.9 247.6 269.1
    Cystic Fibrosis 107.3 117.2 126.7
    Diabetes Research** 688.1 781.3 845.1
    Diagnostic Radiology 489.5 574.0 633.3
    Emerging Infectious Diseases 222.6 382.4 1,466.6
    Chronic Fatigue Syndrome 5.8 6.2 6.5
    Fibromyalgia 9.5 10.6 12.3
    Gene Therapy 349.4 390.1 427.4
    Hepatitis - C 84.0 95.2 103.0
    Hypertension 277.0 307.5 329.5
    Infant Mortality/ (LBW) 448.8 506.8 561.3
    Kidney Disease 320.7 367.1 399.1
    Lupus 64.6 73.4 78.9
    Mental Health 1,446.3 1,635.0 1,769.6
    Multiple Sclerosis 69.8 77.5 83.9
    Muscular Dystrophy 21.0 23.4 25.4
    Neurosciences Research 3,800.7 4,305.7 4,665.0
    Nutrition 755.7 859.2 942.7
    Obesity 222.6 252.3 274.1
    Osteoporosis 173.0 193.9 209.6
    Parkinson's Disease 175.1 198.9 215.1
    Pediatric Research 2,509.6 2,829.2 3,052.9
    Polycystic Kidney Disease 18.7 21.0 22.9
    Prevention 5,124.2 5,927.1 6,852.3
    Sexually Transmitted Diseases/Herpes 167.8 190.0 208.6

    (Dollars in millions) FY2001 FY 2002 FY 2003
    Research/Disease Areas Actual $ Estimate $ Estimate $
    Schizophrenia 276.1 312.4 338.4
    Sickle Cell Disease 71.6 79.7 85.5
    Sleep Disorders 148.1 166.0 178.8
    Smoking and Health 448.3 503.7 554.9
    Spinal Cord Injury 71.5 78.9 84.7
    Stem Cell Research 306.0 346.0 380.2
    Stroke 238.9 263.5 283.1
    Sudden Infant Death Syndrome 54.2 62.0 67.5
    Topical Microbicides 47.0 55.7 68.2
    Transmissible Spongiform Encephalopathy (TSE) 24.0 24.3 26.4
    Tuberculosis Research 87.3 99.4 108.4
    Vaccine Development 550.9 704.3 1,195.7
    Women's Health 2,923.1 3,390.1 4,120.4

    * Amounts include $180 million appropriated to the PHS Emergency Supplemental Fund through the FY 2002
    Department of Defense and Emergency Supplemental Appropriations (P.L. 107-117).
    **Funds available for diabetes research (P.L. 105-33 and P.L. 106-554).
  2. planegirl2

    planegirl2 New Member

    ok, so you dont want to be heard, read this and be ready to scream, we need to be heard, we are on the bottom of the list for research funds, read it for yourself,,,,cfs and fms are the lowest funded of all, NATIONAL INSTITUTES OF HEALTH
    Research Initiatives/Programs of Interest
    (Dollars in millions) FY2001 FY 2002 FY 2003
    Research/Disease Areas Actual $ Estimate $ Estimate $
    Aging Research 1,667.4 1,878.2 2,039.6
    AIDS (Budget Authority) 2,247.0 2,515.0 2,770.0
    Minority AIDS 439.5 487.9 535.8
    Pediatric AIDS 272.8 296.8 319.1
    Vaccines AIDS 269.2 339.5 422.3
    ALS 27.5 30.0 32.3
    Alzheimer's Disease 524.9 594.7 644.0
    Anthrax Research 7.3 42.1 287.4
    Arthritis Research 278.1 316.2 342.6
    Asthma 208.8 233.7 255.6
    Autism 55.8 65.1 70.5
    Autoimmune Disease 495.1 563.4 608.6
    Behavioral and Social Science 2,100.6 2,364.0 2,575.2
    Bioengineering 692.4 792.5 960.6
    Bioterrorism* 52.8 274.5 1,747.9
    Brain Disorders 3,916.5 4,437.7 4,809.1
    Cancer Research 4,376.4 4,929.8 5,558.8
    Breast Cancer 580.9 655.2 732.3
    Lung Cancer 225.6 259.2 297.0
    Ovarian Cancer 90.3 104.0 118.9
    Prostate Cancer 320.1 362.1 408.3
    Cardiovascular Research 1,723.1 1,920.8 2,064.6
    Clinical Research 6,433.3 7,235.7 8,037.3
    Complementary and Alternative Medicine 212.9 247.6 269.1
    Cystic Fibrosis 107.3 117.2 126.7
    Diabetes Research** 688.1 781.3 845.1
    Diagnostic Radiology 489.5 574.0 633.3
    Emerging Infectious Diseases 222.6 382.4 1,466.6
    Chronic Fatigue Syndrome 5.8 6.2 6.5
    Fibromyalgia 9.5 10.6 12.3
    Gene Therapy 349.4 390.1 427.4
    Hepatitis - C 84.0 95.2 103.0
    Hypertension 277.0 307.5 329.5
    Infant Mortality/ (LBW) 448.8 506.8 561.3
    Kidney Disease 320.7 367.1 399.1
    Lupus 64.6 73.4 78.9
    Mental Health 1,446.3 1,635.0 1,769.6
    Multiple Sclerosis 69.8 77.5 83.9
    Muscular Dystrophy 21.0 23.4 25.4
    Neurosciences Research 3,800.7 4,305.7 4,665.0
    Nutrition 755.7 859.2 942.7
    Obesity 222.6 252.3 274.1
    Osteoporosis 173.0 193.9 209.6
    Parkinson's Disease 175.1 198.9 215.1
    Pediatric Research 2,509.6 2,829.2 3,052.9
    Polycystic Kidney Disease 18.7 21.0 22.9
    Prevention 5,124.2 5,927.1 6,852.3
    Sexually Transmitted Diseases/Herpes 167.8 190.0 208.6

    (Dollars in millions) FY2001 FY 2002 FY 2003
    Research/Disease Areas Actual $ Estimate $ Estimate $
    Schizophrenia 276.1 312.4 338.4
    Sickle Cell Disease 71.6 79.7 85.5
    Sleep Disorders 148.1 166.0 178.8
    Smoking and Health 448.3 503.7 554.9
    Spinal Cord Injury 71.5 78.9 84.7
    Stem Cell Research 306.0 346.0 380.2
    Stroke 238.9 263.5 283.1
    Sudden Infant Death Syndrome 54.2 62.0 67.5
    Topical Microbicides 47.0 55.7 68.2
    Transmissible Spongiform Encephalopathy (TSE) 24.0 24.3 26.4
    Tuberculosis Research 87.3 99.4 108.4
    Vaccine Development 550.9 704.3 1,195.7
    Women's Health 2,923.1 3,390.1 4,120.4

    * Amounts include $180 million appropriated to the PHS Emergency Supplemental Fund through the FY 2002
    Department of Defense and Emergency Supplemental Appropriations (P.L. 107-117).
    **Funds available for diabetes research (P.L. 105-33 and P.L. 106-554).
  3. JaciBart

    JaciBart Member

    A few yrs ago believe me I could have gotten the attn of anybody and everybody, now I am just worn out. I don't seem to have any fight left in me. I do all I can to take care of my hubby & son and talk to you guys!

    How about if one of you with a writing talent write a really thorough and painful letter and we all just copy & paste & send it out, I do have a list of all of the media connections nationwide to all of the major media and all the talk show people, I would be happy to send it out, we could all send it to our local papers too as a letter to the editor??????

    Let's do this you guys!

    Jaci
  4. Kathryn

    Kathryn New Member

    I think that it is past time for us to get the attention that we deserve. My mind is too fuzzy to compose an articulate letter these days, but if somebody wants to start one I will help add content and check for spelling & typos. I think something like this should be sent to the media, especially the national outfits.
    Kathryn
  5. Dara

    Dara New Member

    so do you want us to compose a letter and then post it on here and let everyone read it and critique it, add their own suggestions, or what? Do you want to appoint just one person to do it or several to write the letters and then maybe post all of them here and possibly use something from each letter. What one person doesn't think of somebody else might. My problem with all this is that I've had this DD for so long that sometimes I think I've become to use to it that I don't even mention some of the things we have to live with, it's just a part of my daily life.

    When any of my family or friends has a problem with a legal issue or a complaint with a company they bring it to me to write the letter for them. I always tell them if you have a problem, "Write a Letter". Helps to get their attention and it always makes you feel better. I have helped to recover a lot of money that people were unfairly charged, myself included.

    Let me know how you want to get his started. I'm willing to do my part.

    Dara
  6. JaciBart

    JaciBart Member

    Exactly, you start the letter, maybe get some input thru here by the writers, we perfect it and then I send it off to all the nat'l media, we all send it to our local paper.


    Jaci
  7. dojomo

    dojomo New Member

    ........I'm not surprised !!!!!!

    Does it really matter how much money they allocate for CFS.....They usually divert it, or only approve grants for research on cognitive therapy and graded excercise.......
    All smoke and mirrors research to avoid finding the real answers.

    Most of the relevant studes have been privately funded.

    I wrote a letter to NIH requesting a list of all research grants...past, present, and future approved for the study of Chronic Fatigue Syndrome......I'll let you know how they respond.......DJ



  8. dojomo

    dojomo New Member

    ........for current studies.....I found NONE underway for Chronic Fatigue Syndrome at this time......

    But there is currently 3 studies underway for Fibromyalgia......we can look forward to the results of these 3 studies in 2003.......Thanks NIH


    #1)Behavioral Insomnia Therapy for Fibromyalgia This study is currently recruiting patients. Sponsored by
    National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
      Purpose
    This study tests the effectiveness of a nondrug treatment for the insomnia that often occurs in people with fibromyalgia. The treatment is a type of psychotherapy called cognitive-behavioral therapy. Cognitive-behavioral therapy combines cognitive therapy, which can modify or eliminate thought patterns contributing to the person's symptoms, and behavioral therapy, which aims to help the person change his or her behavior.
    Condition Treatment or InterventionPhase Fibromyalgia


    #2)Assessing Fibromyalgia Treatments
    This study is currently recruiting patients. Sponsored by National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)   Purpose
    This study will compare the effectiveness of combination therapy with the drugs amitriptyline and fluoxetine (AM+FL) and amitriptyline (AM) alone in the treatment of people with fibromyalgia. Doctors will treat each study participant with both AM + FL and AM alone for 6 weeks at a time. The study uses a method that combines results from treatment of individual patients to assess overall treatment effectiveness and help individual patients and their physicians with their treatment decisions. This study will also help compare the results of community-based studies (studies involving private doctors) and studies based at clinical research centers.
    Condition Treatment or InterventionPhase Fibromyalgia  Drug: Fluoxetine and Amitriptyline
    Phase IV


    #3)Tailored Treatments of Fibromyalgia
    This study is currently recruiting patients. Sponsored by National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)   Purpose
    This study will evaluate the effects of matching treatments to people with fibromyalgia syndrome (FMS) on the basis of their psychosocial and behavioral characteristics. We will look at how patients respond to a rehabilitation program that includes physical therapy and information about fibromyalgia. We will combine this program with psychological treatments that are either matched or mismatched to the way patients cope with and adapt to symptoms of FMS. The second aim of our study is to better understand how different FMS symptoms may vary together and how these symptoms change as a result of treatment in a person's natural environment. People with FMS and healthy people of the same ages will record their moods, thoughts, symptoms, activities, and fatigue levels three times a day for 2 weeks. Participants will use palm-top computers to record these "real-time" assessments. This approach will permit people to rate how they feel at a particular time rather than looking back in time.
    Condition Treatment or InterventionPhase Fibromyalgia  Behavior: Cognitive-behavioral psychotherapy and physical exercise Phase
  9. opala

    opala New Member

    My husband is a writer. If you guys are interested, I can ask him to help write a letter for us. I have thinking about lobbying my elected officials for funding research into this DD.
  10. Dara

    Dara New Member

    I attend a Fibromyalgia Clinic at Oregon Health Sciences University which is headed by Dr. Robert Bennett. I don't know how much money they have for it, but it was my understanding it was quite a large grant. They are doing many clinical trials right now and they are posted on Dr. Bennetts website for fibromyalgia. I am scheduled to have a stimulation done on my petuitary gland to find out why my growth hormone level is only at 60 compared to the norm which is about 250-300.

    Dara
  11. Dara

    Dara New Member

    I was just going through the past postings I have submitted to see what other replies followed. On this posting someone had suggested writing a letter, then someone posted saying her husband was a writer and that he would do it. Do you know if anyone has followed through yet??

    Dara