1. Patients launch $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!
Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
Discuss the article on the Forums.

CDC's Updated CDC/CFS Website: 21 July 2010 - CYA Plan for their desperate cover-up!

Discussion in 'General ME/CFS News' started by muffin, Jul 24, 2010.

  1. George

    George waitin' fer rabbits

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    Wow Shrew, was that like an orgasim??? and can I have some of whatever you're YESSING (big grins)
  2. Frickly

    Frickly Senior Member

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    Wow George! Thanks for the vote of confidence but have to admit that Kati was the one who found this within the website. Also, I really suck at writing but have alot of drive and determination, not to mention, awesome friends who actually can write. This is a major issue that I think we should all pay attention to.

  3. Anika

    Anika Senior Member

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    CDC Website - No Changes on Diagnostic Tests

  4. Mya Symons

    Mya Symons Mya Symons

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    Wow, I am so angry right now about their statements on children. Before my son started having seizures and was diagnosed at Seattle Children's Hospital, he was in a gifted and talented class. He has never experienced stress from being abused in any way. He has always been well adjusted with many friends. What the h@ll is wrong with these people!!!!
  5. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Brisbane, Aust
    Sorry Tina. Missed your comment and kinda said the same thing on another thread. I agree wholeheartedly with your assessment. It makes the most sense.
  6. aruschima

    aruschima I know nothing

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    Actually muffin it was not me who can take credit for the discovery of the CDC site changes, it was another member of another board. But i will take credit for the following thought process (if it is worth any) , which i posted another board, just at the same time, when the CDC Revamp was discovered. So here it is:



    Since days and weeks I am on different boards reading about the topic of the day, XMRV and the controversy surrounding the hold on the FDA, Alter paper. While I was watching and listening I started to realize that most of the researchers and agencies working on XMRV/ME/CFS know shockingly really very little about ME/CFS and definitively nothing about the urgency for us patients, to get help and results. We, on the other hand, do know very little about these big agencies; how they work and think. (I am not talking about the few mentally retarded at the CDC. We know how they think, but they are not representative of all the agencies and researchers, although they had far too much influence on the politics surrounding ME/CFS. )
    I ask myself the question if we are doing a good job, the way we advocate for our "cause”?
    First thing, shouldn't we get to know who your dealing with.....?
    In the search for this answert i started searching and found this transcript covering the meeting of FDA EMERGING INFECTIOUS DISEASES CONFERENCE ....
    It is long and really boring, but it shows what is going on behind those doors and how these people work and think. Here just a few phrases which caught my eye:

    “From a public policy point of view, I think there's a lot of pressure, there's a lot of pressure particularly from people with CFS, which is a disease of considerable concern, and their belief is that if this is -- does have an infectious cause, and that's a very open question, shouldn't we be reducing the risk of transmitting this to other people. But the problem of transmission of XMRV if it is a problem, it's going to be very much bigger than I think CFS alone. “

    "In the context of XMRV, I think that there is an emergency, but it's a perceptual emergency. And I'm not as well versed in the tools of managing that, but I think that what we need to do is to manage people's reactions rather than people's safety at this point. "

    "Just a follow-up to the last comment that Roger made that I agree very much, and I think you touched the important point, is that I believe that we are going to confront this type of issues more and more frequently. It became a pattern with for instance, Gulf War syndrome, and all that where affinity groups as you called -- have adopted transfusion as a way of calling more resources to their issues.
    And in fairness to them, it's a very serious problem and they haven't gotten enough in attention and support. But I think that we have to be able to deal with the issue because it is going to become more frequent than it is now.
    MR. DODD: Thank you. I'm glad you said it, not I"

    DR. ALTER: "Yeah, well, I was going to say something very similar to Roger. I think this theoretical formula that I would have -- you can do the same by logic and eyeball (phonetic). But if you had a formula and you took XMRV we know a rough donor prevalence that we'd be okay there but we haven't yet proven it's blood transmissible. That information should probably be coming out soon. But we don't have a disease. So I think -- so that would turn your formula right now to zero but -- so that puts it into a very low priority based on science. That's where maybe perception would come in and then the perception would say well, maybe we should do something but something mild. You know, maybe ask a question or give more information to the donors. Those are mild interventions which are commensurate with the risk. If it turns out that it really causes chronic fatigue syndrome that it moves up the ladder on your priority list. "

    http://www.fda.gov/downloads/Biolog...ts/WorkshopsMeetingsConferences/UCM214030.pdf

    I posted this train of thought on another board and someone on that board directed my attention to other agencies involved in the of ME/CFS.

    Here is what he said:
    There are those who know, and they don't want the blood supply issue to come up.

    You need to see who has been in charge of the NIAID at NIH for 26 years.

    http://oslersweb.com/blog.htm?post=693814

    RE-POST; ANTHONY FAUCI April 17, 2010

    http://oslersweb.com/blog.htm?post=635123

    I continue my train of thought and try to summarize:

    So, who do we have there at NIH ? Anthony Fauci .
    Seems he as well does not know ME/CFS, does not understand the urgency and it seems he is mainly interested in getting HIS research grants. (Do we know where this grants are really going?I mean now?)

    We have the FDA: does not know much about ME/CFS and they do not see the urgency in XMRV as long as the virus is not associated with a disease, but want further studies!
    They also want to control public reaction to the new retrovirus XMRV, rather than control the spread of the virus XMRV! (See text of conference above)

    The CDC has just revamp their website , they continue more than ever to propagate ME/CFS abnormalities are theoretical and experimental, even though all the experts and all of them use the Canadien Consesus Diagnostic Criteria and have accepted those test as part of the diagnostic process.


    So, where are we?

    The publication to the study which could prove the disease link of XMRV to a disease (Alter publ.), which according to the FDA is needed to upgradeXMRV to an emergency topic, has been halted.

    First international Workshop on XMRV has topic speakers wich are NOT ME/CFS speakers ! Micovits is getting side lined?

    ADVISORY COMMITTEE BLOOD PRODUCTS MEETING does not list the FDA/Alter studies and goes into a Meeting without the results of the most important replication study on XMRV , which could prove disease association !

    The CDC denies any biological abnormalities are valid in ME/CFS, that it self endangers Micovits study to be seen as questionable and possible all other future studies, because we do not have a patient cohort criteria which is validated !


    All three Agencies seem to have one factor in common, although because of different reasons:

    All three agencies want to dissociate XMRV from ME/CFS !

    I ask myself the question if we are doing a good job, the way we advocate for our "cause”?
    What do we need to do to get results AND HOW DO WE REACT TO THE RECENT EVENTS?
  7. aruschima

    aruschima I know nothing

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    ad

    I just want to add some thoughts and findings. I have not yet come to a definite conclusion on what to think about all the recent events and really do not know if my summary is correct. So go ahead an find loop holes in my train of thought......


    I just checked the NIH site and there was a little passage on the site, which I want to add. It shows how those agencies have contradicting information posted.

    http://www.nih.gov/researchmatters/october2009/10192009cfs.htm


    No specific cause for CFS has yet been identified. However, patients with CFS are known to have some abnormalities in their immune system. Recently, scientists found evidence of a virus called xenotropic murine leukemia virus-related virus, or XMRV, in the tumors of patients with prostate cancer. Some patients with XMRV-positive prostate cancer were reported to have a specific immune system defect that was also seen in CFS patients. Suspecting a link between the virus and CFS, a team of scientists from the Whittemore Peterson Institute at the University of Nevada, NIH's National Cancer Institute (NCI) and the Cleveland Clinic set out to look for the virus in blood samples.
  8. muffin

    muffin Senior Member

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    USA!
    CDC Continuing Medical Education (CME) on CFIDS, Course WB1032 - Who Knew?

    Did anyone else know that the CDC provided a CME/CNE on CFIDS? I didn't. Look way down at the bottom where they list Cognitive Behavioral Therapy and Graded Exercise Therapy (GET). Seems the boys in the UK helped our morons at the CDC with this CFS Toolkit! Great! The Sleep section was really helpful as well. As noted, my mother could have written this part. That's how much she understands about CFIDS. Again, thanks to the CDC for all your great work!

    Cognitive Behavioral Therapy (Look how the sociopaths in the UK helped the CDC with treatment! Thanks Weasel!)
    Cognitive behavioral therapy, or CBT, is an individualized, structured, goal-oriented form of therapy often prescribed to help chronically ill patients cope with illness and develop behaviors and strategies that help improve symptoms.
    CBT has been shown to be effective in CFS, but it must be paced, personalized, and tailored to the individuals level.
    More

    Graded Exercise Therapy (GET) (Look how the sociopaths in the UK helped the CDC with treatment! Thanks Weasel!)
    Graded activity and exercise is defined as starting from a low, basic level of exercise and/or activity and gradually increasing it to a level where people can go about their daily life. NOTE: the level of activity may not be the same as before the CFS diagnosis. Graded exercise therapy (GET) has shown to be very helpful to CFS patients.
    There should be a 1 to 3 ratio with exercise to rest. For example, if a person walks for 5 minutes, then they should rest for the next 15 minutes. Activities need to be spread evenly throughout the day and should not make symptoms worse. If activities are not spread out, patients will "push" themselves too much and "crash".
    More

    Sleep (WOW! Very helpful info on sleep. But what about the damage to our Delta Waves? This sounds like something my Mother would write - "You just need to go to bed at the same time each night and then you won't be so tired all day" Maybe my mother should go work for the CDC.))

    The majority of CFS patients experience some form of problems with sleep. Most CFS patients experience non-restorative sleep as compared to their pre-illness experience.
    Health professionals can help people with CFS adopt good sleeping habits. Patients should be advised to practice standard sleep hygiene techniques:
    schedule regular sleep and wake times - try to get up at the same time everyday
    establish a regular bedtime routine, which may include a warm bath or shower, or listening to soothing music
    avoid napping during the day
    incorporate an extended wind-down period
    use the bedroom only for sleep and sex; not for other activities such as watching TV, reading, or working on a computer
    control noise, light and temperature in the bedroom
    avoid caffeine within 6 hours of bedtime, and alcohol and tobacco within 2 hours of bedtime
    light exercise and stretching earlier in the day, at least four hours before bedtime, may also improve sleep.
    When sleep hygiene is not successful, the use of pharmaceutical drugs may be indicated.
    -----------------------------------------------------------------------------------------------------------
    http://www.cdc.gov/cfs/education/wb1032/index.html
    Diagnosis and Management, Course WB1032
    The web-based curriculum, CFS: Diagnosis and Management provides a general overview of chronic fatigue syndrome (CFS), offering specific information concerning care of persons with the illness. The material was developed for primary care professionals and is applicable to physicians, nurse practitioners and physician assistants who have primary responsibility for diagnosis and management of CFS. The content was developed by CFS experts on the basis of their clinical and/or research experience and has been approved by the Centers for Disease Control and Prevention (CDC).
    Participants have the option to earn CME, CNE or CEU free of charge. We ask that before you register, you review the course information below.
    This program provides information for use in clinical practice. Feedback on the course content and its usefulness is welcomed; please note your observations in the comment section of the course evaluation. For those who wish more in-depth information, references follow the course material.
    Continue to course content
    Faculty and Credentials
    This educational module is based upon curriculum content from the primary care provider education project and CFS clinical and research experts also contributed to the development of the programs content.
    The following individuals are considered content experts for this activity:
    James Jones, MD, Research Medical Officer, Centers for Disease Control and Prevention
    Teresa Lupton, RN, BSS, Coordinator for Medical Opportunities, CFIDS Association of America
    Kimbery McCleary, BA, CEO, CFIDS Association of America
    William Reeves, MD, Branch Chief, Centers for Disease Control and Prevention
    Vicki Walker, BA, Manager, Research and Public Policy, CFIDS Association of America (formerly)
    CDC, our planners, and our content experts wish to disclose they have no financial interests or other relationships with the manufacturers of commercial products, suppliers of commercial services, or commercial supporters. Content will not include any discussion of the unlabeled use of a product or a product under investigational use. There was no commercial support provided for this activity.
    Please see the development team page for a complete listing of program advisors.
    Origin Date: August 2, 2006 Renewal Date: August 8, 2009 Expiration Date: August 8, 2012
    Goal Statement
    The goals of this educational activity are to offer a general overview of chronic fatigue syndrome (CFS) and provide information that is valuable in the clinical setting.
    Course Objectives
    After completion of this activity, participants will be able to:
    1. Define CFS according to the 1994 International Case Definition (Fukuda et al., 1994).
    2. Explain the diagnostic process for CFS.
    3. Identify management strategies for CFS.
    4. Recognize the wide-ranging impact of CFS.
    Course Instructions
    1. REVIEW course information on this page.
    2. READ The course features an up-to-date curriculum, two case studies, downloadable booklet on Assessing and Documenting Impairment in CFS and additional fact sheets on CFS.
    3. COMPLETE LEARNING ASSESSMENT AND EVALUATION Following the course, participants are given two opportunities to score 70% or higher on a learning assessment and are also required to complete a course evaluation.
    4. REQUEST After the participant successfully completes the learning assessment and evaluation, they may print a certificate.
    Continuing Education
    In order to earn continuing education (CE), participants in this learning experience must complete:
    1. Core content and associated supplemental graphics/pages
    2. Two case study reviews
    3. Learning assessment
    4. Course evaluation
    Participants are given two opportunities to score 70% or higher on the post-course learning assessment and are also asked to complete a course evaluation. At that time, a certificate can be printed.
    Accreditation Continuing education qualification is determined by the organization from which you are licensed. The best way to determine if any of the categories listed below apply to your discipline is to contact the licensing organization directly. Most states and organizations have their own set of regulations; generally CME (physician and non-physician), CNE and CEU, all of which are offered for this course, are generally accepted nationally.
    CME

    Introduction
    Course Instructions
    1. Read all required materials. These include:
    1. Didactic Text
    2. Appendix: Energy Conservation in CFS
    3. Appendix: Cognitive Behavioral Therapy Fact Sheet
    4. Appendix: CFS Resources
    5. Case Study One: Lillia
    6. Case Study Two: Rita
    2. If your session times out or if you must re-enter the website go to the CDC/ATSDR Training and Continuing Education Online. Access your progress profile by clicking on the course description for Course Two, WB1032, CFS: Diagnosis and Management. Once you open the new screen click on Begin Exam located under Status and complete the Self-study Learning Assessment. After participants successfully* complete the exam, they are given access to the Self-study Course Evaluation and the certificate of completion.
    * Participants are given two opportunities to score 70% or higher on a learning assessment and are also asked to complete a course evaluation. At that time, a certificate can be requested. Please note that all certificates are sent after evaluation of participants registration requirements. The amount of CE credit may vary and is determined by the actual length of time participants spend on the materials. (Note that this time will not exceed the approved program length for each credit type: CME, CME non-physician, CNE and CEU.)
    Learning Time
    Chapter One
    Approximately 10 minutes to complete.
    1. Overview of CFS
    2. Possible Contributing Factors
    3. Myths Surrounding CFS
    Chapter Two
    Approximately 25 minutes to complete.
    1. CFS Case Definition
    2. Diagnosis
    3. Management of CFS
    Chapter Three
    Approximately 10 minutes to complete.
    1. Impact of CFS
    2. Prognosis
    3. Disability
    4. Conclusion
    Appendices
    Approximately 30 minutes to complete.
    Case Studies
    Approximately 25 minutes to complete.
    References
    Contributors
    This course was authored, reviewed and/or edited by the following individuals:
    James Jones, MD, CDC/NCZVED
    Teresa Lupton, RN, BSS, CFIDS Association of America
    K. Kimberly McCleary, BA, CEO, CFIDS Association of America
    William Reeves, MD, CDC/NCZVED
    Vicki Walker, BA, Graduate Certificate in Public Health Issues, formerly of the CFIDS Association of America
    Curriculum advisory panelists:
    Kristine Healy, MPH, PA-C, Midwestern University, Downers Grove, IL
    Leonard Jason, PhD, DePaul University, Chicago, IL
    Nancy Klimas, MD, University of Miami School of Medicine, Miami, FL
    Charles Lapp, MD, Hunter-Hopkins Center, Charlotte, NC
    Contributors for special topics:
    Lucinda Bateman, MD, The Fatigue Consultation Clinic, Salt Lake City, UT
    Staci Stevens, MS, Workwell Foundation, Ripon, CA
    Case Study: Lillia
    Note: This case study is largely based upon course content; however, there may be some topics included that were not covered in course content. This will serve to enhance the learning process. There is no scoring associated with the case study questions.
    Emphasis: Diagnosis
    Patient Description
    Lillia, a 43-year-old Hispanic female, presents with a one-year history of a chronically fatiguing illness. She is a physician who has been on temporary disability status in her job since the eighth month of her illness. Lillia is married to a cardiologist and has two children, ages four and six. She was born in Argentina, immigrated to the U.S. at age eight and has traveled extensively in South America and the U.S.
    Chief Complaint
    "I am tired all the time no matter how much sleep I get, and my memory is deteriorating."
    History of Present Illness
    Lillia describes persistent fatigue, which she characterizes as a 24-hours/day complaint. She awakens "exhausted" and reports sleeping or resting 16-hours/day, rising for about two hours in the morning, then resting until noon, followed by another 2-hour period awake. She naps in the afternoon, arising around 4pm, and "lasting until around 8pm." In addition, she complains of difficulty concentrating, severe enough to keep her from reading a book or even the newspaper. Her forgetfulness is one of her primary concerns, and she feels it has impacted her parenting.
    The illness began with an acute viral syndrome, described as flu-like but with an extraordinary degree of myalgia, in addition to photophobia, low-grade fever and fatigue. The illness began at work, and caused her to leave work early and go to bed for five days. When she returned to work the following week, she was profoundly fatigued, had difficulty concentrating and complained of arthralgia of the large joints and hands.
    At this time she noted both fatigue and cognitive impairments, including poor concentration and forgetfulness to the point that they affected her ability to perform her work as a physician. Her other symptoms included episodes of dizziness, persistent generalized pain, sore throat and tender lymph nodes in the neck and axillae.
    She has been on temporary disability status in her job since the eighth month of her illness. She agreed to stop working after her supervisor pointed out that she had used all of her accumulated sick leave and was averaging three days a week on the job. Of greater concern was the quality of her work, which had been previously outstanding. At the time of her disability decision, she worked as a physician in a hospital-based outpatient program. Her supervisor noted several serious errors in judgment, as well as a series of errors prescribing common medications. She was advised to take advantage of the disability policy and seek further medical treatment.
    1. To better understand the nature of a patients fatigue, what additional questions are important if a clinician is considering a diagnosis of chronic fatigue syndrome (CFS)? (Select all that apply.)
    A. Has the patient had any previous unexplained bouts of prolonged fatiguing illness?
    B. Is the fatigue alleviated by rest periods?
    C. Does exertion worsen the symptoms of fatigue and muscle pain?
    D. All of the above
    Answer #1: D
    In illnesses with multiple symptoms, a careful review to determine if there was ill health before the onset of a chronic fatiguing illness is the key to resolving the differential diagnosis of pre-existing medical or psychiatric diseases, including somatoform and somatization disorders. A long-standing history of frequent medical investigation and treatment for unexplained physical symptoms, persistent fear of medical ill health, despite adequate assessment, preoccupation with unusual physical explanations of illness and persistent rejection of the potential relevance of psychosocial factors may suggest a diagnosis of somatization.
    In order to meet the 1994 case definition, the fatigue must be severe, not relieved by sleep or rest, nor the result of excessive work or exercise. The fatigue substantially impairs a persons ability to function normally at home, at work and in social situations.
    During postexertional periods, muscle groups not immediately involved in the exertion are often affected. In most instances, the symptoms of CFS can be distinguished from the closely related phenomena of somnolence, muscle weakness, neuromuscular fatigability, depressed mood and anhedonia.
    Differential Diagnosis of Fatigue
    Findings Etiology
    Reduced muscle strength at rest
    Difficulty walking or lifting weights Muscle weakness (e.g., myopathy, polymyositis)
    Loss of muscle power over time with activity Neuromuscular fatigability (e.g., myasthenia gravis)
    Physical and mental fatigue at rest Central fatigue (e.g., multiple sclerosis)
    Lack of motivation to commence tasks and lack of pleasure from tasks undertaken Anhedonia (e.g., major depression)
    Daytime sleepiness or short sleep latency Sleepiness (e.g., sleep apnea, narcolepsy)
    Breathlessness at rest or on exercise Dyspnea and weakness (e.g., cardiac failure, airflow limitation, anemia)
    Muscle pain, joint pain, fever, malaise Inflammation (e.g., systemic lupus erythematosus)
    Infection (e.g., influenza)
    2. What symptoms would be described as key features of chronic fatigue syndrome, if the symptoms were to last more than 6 months? (Select all that apply.)
    A. Persistent fever greater than 101
    B. Arthralgia of the large joints and hands
    C. Sore throat and tender lymph nodes in the neck and axillae
    D. Vertigo
    Answer #2: B and C
    CFS is defined as chronic persistent fatigue and four of eight symptom criteria, after other medical and/or psychiatric reasons that would explain the symptoms have been excluded. The eight symptom criteria include: impairment in short-term memory or concentration, sore throat, tender lymph nodes, muscle pain, multijoint pain without swelling or redness, headaches of a new type or severity, unrefreshing sleep and postexertional malaise lasting more than 24 hours.
    Arthralgia is a symptom that can occur in many different diseases. Osteoarthritis or degenerative arthritis must be ruled out, though it is usually limited to large joints. Rheumatoid arthritis, systemic lupus erythematosus (SLE), inflammatory bowel disease, Hepatitis B and C and German measles (rubella) are other illnesses that may present with arthralgia. CFS pain can occur in muscles or joints, but does not include redness or edema.
    Sore throat and tender axillary and/or cervical nodes are less common complaints of patients with CFS and are generally associated with non-exudative pharyngitis. The finding of splenomegaly, hepatomegaly, diffuse lymphadenopathy or persistent fever greater than 101F are exclusionary for CFS and should trigger a diagnostic evaluation for other causes, for example, malignancy, HIV infection or SLE. Fibromyalgia causes prolonged fatigue and widespread muscle aches and pains. A characteristic feature of fibromyalgia is the existence of at least 11 of 18 distinct sites of deep muscle tenderness that hurt when touched firmly. The muscle pain fluctuates and is often aggravated by various physical, environmental and emotional factors. Recurrent sore throat, headache, lowgrade fever and depression are also commonly reported symptoms of fibromyalgia.
    Vertigo is not typical of chronic fatigue syndrome but must be distinguished from lightheadedness or dizziness, both of which are reported by CFS patients (but not part of the case definition).
    Past Medical History
    Lillia had the "usual" childhood illnesses, including mononucleosis at age sixteen. While a medical student, she had several episodes of "strep throat."
    Social History
    No alcohol, drug or tobacco use.
    Family History
    Significant for coronary artery disease (father died at age 54), cousin with SLE, maternal aunt with 20-year history of unexplained fatiguing illness and lung cancer (maternal uncle and paternal grandfather).
    Medication
    Birth control pills
    Multivitamins
    Temazepam for sleep disturbance
    She had been prescribed cyclobenzaprine HCl but found it too sedating.
    NSAIDs (non-steroidal anti-inflammatory drugs) had also been tried, but were ineffective and upset her stomach.
    3. According to practicing clinicians, which medications have shown some success in treating CFS? (Select all that apply.)
    A. Sedatives
    B. Muscle relaxants
    C. Pain medications
    D. Stimulants
    E. Antidepressants
    F. Immunosuppressants
    Answer #3: A, B, C, D and E
    All, with the exception of immunosuppressant agents, may be helpful. Sedatives and hypnotic medications used to assist patients to achieve sleep may be helpful in managing symptoms of unrefreshing sleep. Although helpful, they (as well as antihistamine and antidepressant medications) can also enhance symptoms of fatigue and cognitive dysfunction. The clinician should prescribe the lowest dose that achieves symptom control and for a limited-time trial period. Muscle relaxants may also contribute to the symptoms of weakness, as well as cognitive complaints, but they can help to relieve fibromyalgia pain.
    While non-steroidal anti-inflammatory drugs (NSAIDS) are usually tolerated well, opiates and codeine derivatives can cause serious fatigue and cognitive dysfunction. It is recommended that a pain management specialist be consulted to direct the use of narcotics.
    Stimulants, self-prescribed by patients, can intensify sleep disorder symptoms. Exploring the use of caffeine, over-the-counter (OTC) stimulants and their potential impact on sleep may be useful.
    Antidepressants can be either sedating or stimulating and have the potential to worsen some symptoms. Because of the high rate of depression in people with CFS, antidepressant therapies have received considerable attention, but empirical evidence from trials is limited. Studies of combination therapy with a low dose tricyclic antidepressant and NSAIDS in people with fibromyalgia found beneficial effects on muscle pain and sleep disturbance, but not on fatigue or mood. Reports show that about 50% of CFS patients will suffer from a major depression at some point during their illness; therefore, therapeutic doses of antidepressants may be of benefit in this context.
    Immunosuppressants are not indicated in the management of patients with CFS.
    Phyisical Examination
    Vital Signs
    BP 95/60, HR 82, Temp 97.6F
    HEENT
    Tender cervical lymph nodes, 1 to 2 cm diameter; pharyngitis
    Thorax
    A single tender 1 cm R axillary lymph node; normal breast examination
    Abdomen
    A tender spleen tip, barely palpable
    Musculoskeletal
    14 of 18 tender points; no joint effusions
    Neuro
    Neurological examination within normal limits
    Laboratory (Based on this patient's history and physical exam findings)
    CBC and differential
    Normal
    ESR
    8 mm/hour
    Chemistry Panel 23
    Unremarkable
    Monospot
    Negative
    Cytomegalovirus serology
    Undetectable
    Lyme serology
    Undetectable
    Thyroid function studies
    Noncontributory
    Antinuclear antibodies
    Noncontributory
    Rheumatoid Factor
    Noncontributory
    4. What findings are diagnostic of fibromyalgia? (Select all that apply.)
    A. At least 11 of 18 specific tender points on physical examination
    B. Tender abdomen
    C. Pharyngitis
    D. Lymphadenopathy
    E. Headache of a new type
    Answer #4: A
    Diagnostic findings (for Lillia) include 14 out of 18 possible tender points on physical examination. The symptoms of fibromyalgia closely resemble those of chronic fatigue syndrome. One main difference is fibromyalgias relative emphasis on musculoskeletal pain rather than fatigue. Fibromyalgia is a syndrome of chronic muscle pain of at least three months duration that is recognized as a distinct medical condition with characteristic findings. Discrete areas of tenderness in specific locations called tender points are case defining. There are 18 body locations of which at least 11 must be present to make the diagnosis of fibromyalgia. Tender points must be located on both sides of the body and above and below the waist. They may be constant or migratory.
    Fibromyalgia has a number of associated symptoms. The muscle pain may fluctuate and is often aggravated by a variety of physical, environmental and emotional factors. Patients also report weakness, swelling, cold intolerance, poor sleep and dry eyes. Tension and muscle contraction headaches, chest pain, mitral valve prolapse, irritable bowel syndrome, temporomandibular joint (TMJ) dysfunction, irritable bladder, depression and CFS have also been linked to fibromyalgia.
    Pharyngitis, tender cervical and axillary lymph nodes and headaches are CFS diagnostic criteria.
    Diagnostic Challenges
    Diagnosing chronic fatigue syndrome (CFS) can be complicated by a number of factors:
    1. There's no diagnostic laboratory test or biomarker for CFS.
    2. Fatigue and other symptoms of CFS are common to many illnesses.
    3. CFS is an invisible illness and many patients don't look sick.
    4. The illness has a pattern of remission and relapse.
    5. Symptoms vary from person to person in type, number and severity.
    These factors have contributed to an alarmingly low diagnosis rate. Of the four million Americans who have CFS, less than 20% have been diagnosed.
    Getting Tested for CFS
    Because there is no blood test, brain scan or other lab test to diagnose CFS, it's a diagnosis of exclusion. If a patient has had 6 or more consecutive months of severe fatigue that is reported to be unrelieved by sufficient bed rest and that is accompanied by nonspecific symptoms, including flu-like symptoms, generalized pain, and memory problems, the physician should further investigate the possibility that the patient may have CFS. Your health care professional will first take a detailed patient history, including a review of medications that could be causing your fatigue. A thorough physical and mental status examination will also be performed. Next, a battery of laboratory screening tests will be ordered to help identify or rule out other possible causes of your symptoms. Your professional may also order additional tests to follow up on results of the initial screening tests. A diagnosis of insufficient fatigue could be made if a patient has been fatigued for 6 months or more, but does not meet the symptom criteria for CFS.
    The complete process for diagnosing CFS can be found here.
    It can be difficult to talk to your physician or other health care professional about the possibility that you may have chronic fatigue syndrome. A variety of health care professionals, including physicians, nurse practitioners and physician assistants, can diagnose CFS and help develop an individualized treatment plan for you.
    Additional information for diagnostic tests for healthcare professionals can be found here.
    Criteria for Diagnosis
    Your clinician should consider a diagnosis of CFS if these two criteria are met:
    1. Unexplained, persistent fatigue that's not due to ongoing exertion, isn't substantially relieved by rest, is of new onset (not lifelong) and results in a significant rEducation in previous levels of activity.
    2. Four or more of the following symptoms are present for six months or more:
    o Impaired memory or concentration
    o Postexertional malaise (extreme, prolonged exhaustion and sickness following physical or mental activity)
    o Unrefreshing sleep
    o Muscle pain
    o Multijoint pain without swelling or redness
    o Headaches of a new type or severity
    o Sore throat that's frequent or recurring
    o Tender cervical or axillary lymph nodes
    Self-diagnosis
    Chronic fatigue syndrome can resemble many other illnesses, including mononucleosis, Lyme disease, lupus, multiple sclerosis, fibromyalgia, primary sleep disorders, severe obesity and major depressive disorders. Medications can also cause side effects that mimic the symptoms of CFS.
    Because CFS can resemble many other disorders, it's important not to self-diagnose CFS. It's not uncommon for people to mistakenly assume they have chronic fatigue syndrome when they have another illness that needs to be treated. If you have CFS symptoms, consult a health care professional to determine if any other conditions are responsible for your symptoms. A CFS diagnosis can be made only after other conditions have been excluded.
    It's also important not to delay seeking a diagnosis and medical care. CDC research suggests that early diagnosis and treatment of CFS can increase the likelihood of improvement.
    ===============================================
    CFS Toolkit Introduction to the Toolkit
    Chronic fatigue syndrome (CFS) is a complex and serious disease. The CFS toolkit was prepared to provide quick and easy-to-use resource for clinical care. It provides the best practices for diagnosing, treating and managing CFS. The approach may also be considered for people with CFS-like illnesses.
    Healthcare professionals can use this toolkit to work with patients suffering from CFS by managing symptoms, improving function, conserving energy (for example, not becoming overtired), and monitoring activity levels. Even though there is no cure yet for CFS, there are treatment options that improve CFS patients quality of life and increase daily living activities.

    Making a Diagnosis
    Because there is no specific test to diagnose CFS, the diagnosis is made through clinical and laboratory examinations to exclude other conditions. A detailed patient history and thorough physical and mental status examination will help in making the diagnosis. A series of laboratory tests will help identify or rule out other possible causes of symptoms. A diagnosis of CFS-like illness could be made if a patient has been fatigued for 6 months or more, but does not meet the symptom criteria or the rest or activity criteria of fatigue for CFS.
    A clinician should consider a diagnosis of CFS if these two criteria are met:
    1. Unexplained, persistent fatigue present for 6 months or more that is not due to ongoing exertion; is not substantially relieved by rest, is of new onset (not lifelong) and results in a significant reduction in previous levels of activity.
    2. Four or more of the following symptoms are present for six months or more:
    o Impaired memory or concentration
    o Postexertional malaise (extreme, prolonged exhaustion and sickness following physical or mental activity)
    o Unrefreshing sleep
    o Muscle pain
    o Multijoint pain without swelling or redness
    o Headaches of a new type or severity
    o Sore throat that's frequent or recurring
    o Tender cervical or axillary lymph nodes
    Treatment and Management
    Managing chronic fatigue syndrome can be as complex as the illness itself. There is no cure yet, no prescription drugs have been developed specifically for CFS, and symptoms vary considerably over time.
    The management of CFS may require working with a team of doctors and other health care practitioners, which might include mental health professionals, rehabilitation specialists, and physical or exercise therapists, to create an individualized treatment program. This program should be based on a combination of therapies that address coping techniques, symptoms and activity management. If a team approach is not practical, primary care providers can address the individuals needs.
  9. usedtobeperkytina

    usedtobeperkytina Senior Member

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    So I am hanging out on the CDC website, and what do I see? used to be Major depressive disorder was something considered comorbid, but a completely different condition. Now, in one of the lessons for Allied Health Professionals, there is a whole subheading on CFS and depression. And, it seems, a new theory for them:

    "On the basis of symptom patterns and clinical course, several subtypes of depressive disorders have been defined in the Diagnostic and Statistical Manual for Mental Disorders (DSM-IV) (American Psychological Association, 1994). Some of these subtypes are clearly different from CFS, whereas other subtypes resemble CFS, which might suggest that these disorders and CFS are part of a spectrum of disorders."

    The whole course lesson is here: http://www.cdc.gov/cfs/education/wb3151/chapter2-2.html

    Tina
  10. SOC

    SOC Moderator and Senior Member

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    I suspect CDC's big play right now is to cover their behinds. George may be onto it here. All those tests don't apply to us because we don't have "CFS" by the CDC's new/old definition. I think their line is going to be that those of us with neuro-immune symptoms "are not and never were CFS patients" (wink, wink). We were misdiagnosed by our physicians. The CDC has always [Hah!] been talking about those people who don't have infectious diseases (even hard to detect) or immune abnormalities, or......

    "If you don't believe it, just look at the cohort of our last few studies. Those are not really sick people with neuro-immune illness." [wide-eyed innocent CDC PR stare]

    So maybe CDC is aiding us [choke, gag] in getting rid of that blasted name, CFS. They want us all to be called something else so that, in hindsight, they don't look like the.... whatever.... they are.

    By that argument they're throwing all the doctors who diagnosed us with "CFS" to the dogs. It's their fault we've been misdiagnosed and mistreated all these years, not the CDC's fault.
  11. shrewsbury

    shrewsbury member

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    Yikes - Tina - this is so frightening. I think it deserves it's own thread - something like WARNING: CDC now teaching that CFS and some depression subtyes are of same spectrum (if somehting that long can fit in a title)

    People need to know this.
  12. shrewsbury

    shrewsbury member

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    I am finding this quite ominous. After reading people's ideas on several sites,

    to me it looks like HHS has been busy and we're now starting to see some of it's strategy

    The CDC's resources go into this revision - no bio-physical testing for CFS. Phsychological treatments. A flashing box on the first page that says childhood adversity

    The NIH cosponsors the 1st XMRV conference. Dr Mikovits is not invited and Mr Switzer speaks on Assay Development.

    The FDA/NIH Alter paper is still not published and final submission date for participation at the xmrv workshop is June 30. I'm beginning to be afraid that the Alter paper will not appear, will be altered (bad pun - sorry), or will come out after the xmrv conference.

    The CDC is teaching doctors that CFS may be part of a spectrum of depression (with no research to support this theory?? - see tina's post #50 for more info on this or check it out for yourself here)

    IIn reading over your thoughts and my own puzzling over this, 'm wondering is HHS has a 2-pronged plan

    1. try to get rid of all research on xmrv and cfs

    2. if that's not successful, then xmrv-caused-disease is not cfs, it is XAND, and testing is appropriate for it only.

    In both cases, they are strongly moving to make CFS a psychological illness, with no testing that they will pay for, are they supporting the reeves criteria?, sub-grouping cfs with chronic fatigue?................and useless or harmful treatment + lower SSDS benefits I think some Americans said?

    And what then happens to the other research on other aspects of ME/CFS that is looking so promising?
  13. V99

    V99 *****

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    It really is!
  14. shrewsbury

    shrewsbury member

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    does anyone have a copy of the CDC site before it was revised or know how to find one?

    think it could be useful to show the changes side by each
  15. V99

    V99 *****

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    May be a ridiculous question, but could you ask the CDC if they do?
  16. Cloud

    Cloud Guest

    The SSA also uses some of these tests to qualify disability.

    http://www.ssa.gov/OP_Home/rulings/di/01/SSR99-02-di-01.html
  17. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Well, I would say that my blood pressure rises at looking at the CDC site, but mine usually falls, thanks to my mom spanking me for not cleaning my room when I was 7.

    CDC, get ready, phone calls start Monday. Have you got extra staff? My question is how do you distinguish between the neurological condition of ME and the possible depression spectrum disorder of CFS? Where can I go to get information about ME?


    And, I saw the goal of differentiating the CFS from neurological patients was in the CDC study just published. SickofCFS, you can look on that thread and see Switzer's conclusion is that possibly the Science cohort have a neurological condition and not CFS. (and my point is that a good percentage of the Science cohort were Incline Village folks, although not all, and that is the very condition that initiated the term CFS. And now they say those people don't have CFS? So basically they will be throwing those investigators under the bus saying they missed the neurological condition that was in Incline Village. A neurological condition that was transmissable, as whatever was in Incline Village was? So does that mean Reeves was also wrong when he told a T.V. producer that it was hysteria?)

    You know, it really is circular reasoning here:

    CDC: CFS is a set of symptoms without a testable abnormality, oh, except low cortisol

    Question: But not all with CFS have low cortisol. How do you explain that?
    CDC: Well, yeah, but we think CFS has to do with altered stress response and cortisol is part of stress response. So we say that is something associated with the illness. It doesn't have to be in all of them to be associated with it.

    Question: So could the same be said for low natural killer cells?
    CDC: Oh no, now that is not associated with the illness. It doesn't occur in all of those with CFS.

    Question: But it does occur in high number in CFS patients, according to the definition you created. It is not just low numbers, but they don't function right, a clear disease process. And by the way, aren't other infections shown to be more likely to be reactivated in CFS patients? Might the low natural killer cells explain that? Aren't you making a double standard when you say low cortisol is associated with the illness but not low natural killer cell dysfunction, when both occur in higher number of these patients, but not in all of them?
    CDC: Now you are getting things confused. Maybe those folks with this abnormality have an immune system dysfunction. Anyway, it can't be with CFS, the CFS folks we tested don't show this at high numbers.

    Question: But you changed the criteria of who has CFS for the study. Might low natural killer cell function be a factor in those that met your first criteria?
    CDC: No, malfunctioning natural killer cells have nothing to do with stress.

    Question: That's the point. Maybe stress is not the major factor associated with the illness, an immune system abnormality is. Why do you say stress is part of it?
    CDC: Well, we saw that many with CFS said stress was a trigger. So we did this very expensive study. (by the way, take a look at our website. We have a whole page just on this study. It is long. We are very proud of it. You should have seen the effort we went through to find these folks.) And lo and behold, we found that a greater number of CFS patients have had childhood traumas. It became clear that these folks have obviously developed poor stress coping mechanisms.

    Question: Maybe those in your new definition of CFS do. How do you explain all the other studies of biological abnormalities in people that met the definition you had first, you know, the one that doesn't include psychological conditions as part of the criteria?
    CDC: Well, obviously they either had messed up studies, had a bias because they are clinicians also, or they don't know that we have changed the criteria for research.

    Question: Why don't you use the Canadian Criteria?
    CDC: That's obvious. We didn't create it.

    Question: But it is more narrow, which is generally considered better for research. Isn't that right?
    CDC: No, no, no. See, the CCC describes a neurological condition, although admittedly similar, that is different. If they use that for research and surveillance, then they won't know the true nature of the illness or its prevalancy.

    Question: But even you say there are cognitive problems with CFS. Might this mean that it is the same illness, only they have it more clearly defined?
    CDC: See, what you don't realize is that cognitive problems are also part of depression.

    Question: What does depression have to do with it?
    CDC: Well, lots of CFS folks, especially the ones we studied, have depression or symptoms like depression. Since depression is a common reaction to stress, we think that maybe this is just a "different kind" of depression. That is, some people develop melancholy, while others develop CFS.

    Question: But wait a minute, don't studies show that people with depression tend to have higher levels of cortisol? But now you say CFS folks have a different kind of depression. Yet low cortisol is associated with CFS. That don't make sense. How do you explain that?
    CDC: Well, now, that is why we say it is a "different kind" of depression. Because these people had a childhood trauma, or other factor, that caused them to develop abnormal stress responses, their bodies react differently to stresses. Hey, I have met these people. They are high strung and extremely defensive, always trying to justify that they are sick. And as Steven Strauss said, no matter what treatment they have, most of them get better. I can tell you, there is a personality type that goes with this illness. Why I have seen some get better with anti-depressants.

    Question: You mean those that meet your current definition, right?
    CDC: Exactly.



    As upsetting as this is, the key will be in title in the upcoming studies. They will not erase CFS from XMRV unless they can control all medical journals. We know the XMRV positives will soon be moved into a different illness, that's a given, and has been since WPI published. But it doesn't matter what the CDC study or website says if the other studies say, "XMRV Found at High Rate in {insert country here} Chronic Fatigue Syndrome Patients" It's all in the title in the studies. It will be reported in news media as it is labeled in the studies.

    Tina
  18. guest

    guest Guest

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    Looking forward to reading the phone protocols. ^^
  19. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Diesel, see above.

    Tina
  20. Angela Kennedy

    Angela Kennedy *****

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    Sadly, Shrewsbury, everything you've just said here sounds conspiratorial, raving...

    And completely, logically, plausible.

    There's been precedent after precedent to support such an analysis.

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