Saturday, April 16, 2011

Differences Between CFS/ME and Multiple Sclerosis

 

"Currently the only method of differential diagnosis of MS and CFS/ME is by looking at the symptoms. While all other kinds of neurological symptoms are common to both, optic neuritis (inflammation of the optic nerve) is typical of MS but unusual in CFS/ME (many other vision disturbances, however, are normal in CFS/ME). Paresthesias (abnormal sensations) are often associated with both, but tend to be more migratory (moving around) in CFS/ME.

"Severe post-exertional malaise is unique to CFS/ME."

Friday, April 15, 2011

How Little Sleep Can You Get Away With? - NYTimes.com

 
My brain was useless when I was sleeping 2 hours a night.  Not that any of the doctors agreed with my personal assessment that I couldn't work unless they did something about the severe insomnia.

Montoya speaks

 

Disability in Media - Lesson 6: The 'Super-Crip' Phenomenon

 
 
  • Identify several examples of the "super crip" phenomenon, in different forms of the media (advertisements, television shows, movies, etc)
  • Discuss where this particular stereotype may have originated and link it to the historical context provided in previous lessons.
  • Understand how this particular stereotype perpetuates certain social problems faced by the disability community, and identify some of those social problems.
  • Recognize the role that talk shows in particular have played in perpetuating this stereotype and compare it to the freak shows of the 1800's.
  • Understand how both the "disability as pity" and "disability as super crip" stereotypes work to "other" persons with disabilities.
  • It makes audiences feel better about the condition of persons with a disability without having to accommodate them, reinforcing the notion that disability can be overcome if only the person would "try hard enough"

  • * * *
    Too many people in too many twelve-step programs, they've all become convinced that you just need to take responsibility for every bad thing that happens.  No one believes in "accidents" or "fate" any more.  If you're disabled, you did something to deserve it, and just need to pray harder, believe deeper, or do more physical therapy to be cured.
     
    Well, some of us have had entire churches praying over us without being cured.
     
     

    The gruesome math of hospital infections – The Chart - CNN.com Blog

     

    This is exactly the kind of attitude that's killing patients, Pronovost says.

    "What really struck me most in Maureen's column was the physician's lack of accountability," he explains. "He didn't see this as his problem. It was like, 'Well, this stuff happens.'"

    * * *

    Which we've seen in many areas of the medical profession.  Patients get sicker instead of better because they're being treated for the wrong thing, and doctors just shrug it off or -- worse yet -- blame the patient "not wanting to get well".

    As long as it's not a member of the doctor's own family suffering from malpractice, they see no problem with "stuff happens".

    The third leading cause of death in the US is ... doctors!

     

     

    Facebook Triggers Same Hormone As Cuddling

     
    Oxytocin can reduce pain ... so when you're in severe pain, check up on your Facebook friends and see if it helps!

    From 1978 -- yet STILL not taken seriously!

    BRITISH MEDICAL JOURNAL 3 JUNE 1978

    At a symposium held recently at the Royal Society of Medicine…there was clear agreement that myalgic encephalomyelitis is a distinct nosological entity.   Other terms used to describe the disease were rejected as unsatisfactory for various reasons: the cardinal, clinical features show that the disorder is an encephalomyelitis… the exhaustion and tiredness are similar to that described by patients with multiple sclerosis.  From the patient's point of view the designation benign is also misleading, since the illness may be devastating.  Originally, the term was used because no deaths had been recorded from myalgic encephalomyelitis.  Two patients who had had the disease have now been examined post mortem: one was found to have multiple sclerosis.  The adjective epidemic is correct, since most cases occur in an epidemic, but the disease may be endemic, and sporadic cases may occur.

    Some authors have attempted to dismiss this disease as hysterical (McEvedy, C.P and Beard, A.W in BMJ 1970), but the evidence now makes such a tenet unacceptable.  Some purely psychiatric symptoms may well occur, particularly in patients entering the chronic phase.  No doubt too, in an epidemic, some hysterical persons will simulate the symptoms of the disease.  Nevertheless, the organic basis is clear – from the finding that the putative agent can be transferred to monkeys (Pellew, R.A.A and Miles, J.A.R – Medical Journal of Australia, 1955),  the detection of an increased urinary output of creatine (Albrecht, R.M, Oliver, V.L and Poskanzer, D.C, Journal of the American Medical Association 1964), the persistent finding of abnormal lymphocytes in the peripheral blood of some patients (Wallis, A.L, Edinburgh University 1957), the presence of lymphocytes and increased protein concentration in the cerebrospinal fluid of occasional patients (Acheson, E.D. American Journal of Medicine 1959), and the neurological findings. At this symposium more evidence was produced to support the organic nature of the disease. Increased serum concentrations of lactic dehydrogenases and transaminases have been found in several patients examined during the acute attack.  In a recent outbreak in London immunological studies showed a high incidence of serum anticomplementary activity and the presence of ill-defined aggregates on electron microscopy of acute-phase sera (Dillon, M.J et al, BMJ 1974).  A perplexing finding suggesting the possibility of a persistent virus infection, was the ability of lymphocytes from patients to proliferate and survive in vitro for up to 19 weeks.  The results of electroencephalographic studies were also stated to be abnormal, confirming other reports (Ramsay, A.M and O'Sullivan, E, Lancet 1956).

    We still know nothing about the nature and cause of epidemic myalgic encephalomyelitis, but outbreaks are still occurring.  Future epidemics should be studied by a collaborative team of neurologists, epidemiologists, virologists and immunologists.  Its findings would be important not only for the study of epidemic myalgic encephalomyelitis but also for other neurological disorders, including multiple sclerosis.

    Thursday, April 14, 2011

    Table of Contents for PDF

    Page 2
    SAFER • HEALTHIER • PEOPLE

    UPDATES AT:
    http://www.cdc.gov/od/science/techtran/TechAvailableForLicensing.htm
    Contents
    BACTERIAL
    Bacillus anthracis
    Conjugates of Carbohydrates and Anthrax Protective
    Antigen.............................................................................................
    ......8
    Mass Spectrometry-Based Detection Assay for Anthrax Lethal Factor and
    Lethal Toxin Activity............................................8
    FRET-Based Detection Assay for Anthrax Lethal Toxin Activity in
    Serum..............................................................................8
    Bordetella pertussis
    Bordetella Specific Capture
    Reagent....................................................................................................................
    .....................8
    Diagnosis of Bordetella pertussis (whooping cough) via Nucleic Acid Tests
    and Diagnostic Algorithm..................................9
    Chlamydia
    Real-Time PCR-Based Fluorescent Assay Based on the ompA Gene for Detection
    of Chlamydia pneumoniae.......................9
    Diagnostic Peptide Sequence Discovered for Chlamydophilia
    pneumoniae...............................................................................9
    Rapid Method for Molecular Differentiation of Chlamydia Trachomatis
    Biovars Strains.........................................................9
    Methods and Compositions for the Simultaneous Detection of Multiple
    Analytes....................................................................9
    Enterobacteriaceae
    Oligonucleotide Probes for Detecting Enterobacteriaceae and
    Quinolone-Resistant Enterobacteriaceae................................9
    Legionella
    Real-Time PCR-Based Fluorescent PCR for Detection of Legionella
    pneumophila and Legionella spp.................................10
    Mycoplasma pneumoniae
    Real-time PCR Assay for the Detection of Mycoplasma-Pneumoniae Using a
    Cytotoxin Gene Target..................................10
    Development of Primers and Probe for Detection of Mycoplasma pneumoniae by
    Real-Time PCR.......................................10
    Highly Specific Primers and Probe for Detection of Mycoplasma pneumoniae
    Infection........................................................10
    Internal Controls and Control Probes for Identifying Inhibitors During
    Detection Assays of Mycoplasma Pneumoniae and Mycoplasma
    Fermentans.......................................................................................
    ...................................11
    Neisseria meningitidis
    Invasion Associated Genes from Neisseria meningitidis Serogroup
    B.....................................................................................1
    1
    Nocardia farcinica
    Rapid Identification of Nocardia farcinica by a PCR
    Assay..............................................................................................
    ......11
    Streptococcus pneumoniae
    Functional Epitopes of Streptococcus Pneumoniae PsaA Antigen and Uses
    Thereof...............................................................11
    Antibiotic Selection Panels for Use in Multiple-Valent Opsonophagocytic
    Assay for Streptococcus Pneumoniae.................12
    Real-Time PCR Primers and Probe for the Detection of Streptococcus
    pneumoniae...............................................................12
    Development of Real-time PCR Assay for Detection of Pneumococcal DNA and
    Diagnosis of Pneumococcal
    Disease.......................................................................................................................
    ...........................................................12
    Peptide from Streptococcus pneumoniae Surface Adhesion A (PsaA) Protein
    Associated with Adherence............................12
    Pneumococcal Fimbrial Protein
    A........................................................................................................................
    ....................12
    Pneumococcal Fimbrial Protein
    A.......................................................................................................................
    .....................13
    Reduction in Staphylococcus epidermidis Viable Biofilm Formation on the
    Surface of a Hydrogel Coated Catheter Using S. epidermidis Bacteriophage
    PH456...........................................................................
    ...............................................13
    Streptococcus pneumoniae 37-kDa Surface Adhesin A
    Protein.............................................................................................
    ..13
    Streptococcus pneumoniae 37-kDa Surface Adhesin A Protein and Nucleic
    Acids Coding Therefore....................................13
    Recombinant Lipidated PsaA Protein, Methods of Preparation and
    Use..................................................................................14
    Methods and Compositions for the Simultaneous Detection of Multiple
    Analytes..................................................................14
    Oligonucleotide Sequences for Amplification of Streptococcus pneumoniae
    Gene.................................................................14
    Multiple Antigenic Peptides Immunogenic against Streptococcus
    pneumoniae.......................................................................14
    Epitope Peptides Immunogenic against Streptococcus
    pneumoniae.........................................................................................
    14
    Multiplexed Pneumococcal Serotyping
    Assay..............................................................................................
    ............................15
    Streptococcus pyogenes
    Real-Time Polymerase Chain Reaction for Identification of Streptococcus
    pyogenes.............................................................15
    Group A Streptococci
    Peptide Vaccines against Group A
    Streptococci..........................................................................................................
    ............15
    ENVIRONMENTAL AND AGRICULTURAL
    Air Quality
    Air Sampler for Collecting Airborne Fungal Spores in a Microcentrifuge
    Tube for Molecular Analysis................................15
    Page 3
    SAFER • HEALTHIER • PEOPLE

    UPDATES AT:
    http://www.cdc.gov/od/science/techtran/TechAvailableForLicensing.htm
    Mold and Fungus
    Monoclonal Antibodies against Fungi and Methods for Their
    Use..........................................................................................
    .15
    Pest Control
    A New Device for Collecting Resting
    Mosquitoes.........................................................................................................
    ..........15
    Compounds for Pest Control and Methods for their
    Use..................................................................................................
    ........16
    A Simple Process for Producing Wash-Durable Insecticide Impregnated
    Bednets or Other Fabrics.......................................16
    Simple, Nondestructive Colorimetric Field Method to Identify and Quantify
    Cyanopyrethroid Insecticides..........................16
    Synergistic Combinations of Natural Plant Extracts to Control and Repel
    Arthropod Pests....................................................17
    MISCELLANEOUS AND METHODOLOGIES
    Cell Line
    Immortalized Endothelial Cell
    Line.....................................................................................................................
    ....................17
    Food-borne
    A Novel Method Developed to Analyze Saxitoxins in Human
    Urine.......................................................................................17
    Medical Device
    Inactivation of spores and vegetative bacteria on medical devices and
    instrumentation using elevated pressure carbon dioxide based
    mixtures.......................................................................................
    ......................................................17
    Method and Apparatus for Cough Sound
    Analysis.........................................................................................................
    ..........17
    Mixing
    Vial............................................................................................................................................
    ..................................18
    Auscultatory Training
    System..........................................................................................................................
    ........................18
    Medical Software
    Automated Microscopic Image Acquisition, Compositing, and
    Display..................................................................................18
    Finding Usable Portion of Sigmoid
    Curve...............................................................................................................
    ................18
    Methods
    Simultaneous Measurement of Multiple Drugs Using Fluorescent Covalent
    Microsphere Immunoassay (FCMIA)...............19
    Two Optimized Combination Assays To Examine Apoptosis Pathways in Clinical
    Samples..................................................19
    Primer Extension Enrichment Reaction (PEER)
    Protocol..................................................................................................
    .......19
    Microbial Biofilm
    Multicoupon Biofilm CFSTR....................................
    ..........................................................................................
    .....................19
    Miscellaneous
    Real-time TaqMan® PCR for Human RNaseP
    Gene...................................................................................
    .............................19
    Respirable Particle Sampler for the Collection of Air-Borne Fine and
    Ultrafine Particles Directly Into Surrogate Lung Surfactants for
    Bioassay...................................................................................
    ...........................................................19
    Artificial Human Mutation Controls for Diagnostic
    Testing.............................................................................................
    ........20
    Device to Measure Muscle Contractile/Relaxant and Epithelial Bioelectric
    Responses of Perfused, Intact Airways In
    Vitro..........................................................................................................
    .......................................................................20
    Method for Monitoring Local Reaction Associated with
    Injections..........................................................
    ...............................20
    Method for Retaining Methylation Pattern in Globally Amplified
    DNA..................................................................................20
    PCR Exchangeable Template
    Reaction....................................................................................................................
    ................21
    Methods for the Prevention and Treatment of Diseases Caused by an
    Inflammatory Response...............................................21
    Method for Testing Authenticity of Tamiflu
    (Oseltamivir)..............................................................................................
    .........21
    In-Tube Method and Apparatus for Blood Stimulation and Plasma
    Collection........................................................................21
    Use of Cyanidin-3-Glucoside as an Anti-Tumor
    Treatment................................................................................................
    .....21
    Rapid Method for Detecting Cardiovascular
    Disease.....................................................................................................
    ..........22
    Microarray
    PNI Microarray and
    Uses...............................................................................................................................
    ..........................22
    Integration of Gene Expression Data and Non-Gene
    Data.................................................................................................
    .......22
    Microscope
    Improved Compression Algorithm for Images in a Focal
    Stack............................................................................................
    ...22
    Improved Image Acquisition for Bright Field
    Microscopy................................................................................................
    .......22
    Organ Culture
    Artificial Organ Culture
    System........................................................................................................................
    .......................23
    Polymerase Chain Reaction (PCR)
    Photoinduced Electron Transfer (PET) Fluorescent Primer for Nucleic Acid
    Amplification...................................................23
    Fluorescent Primer for Nucleic Acid
    Amplification.....................................................................................................
    ............23
    Page 4
    SAFER • HEALTHIER • PEOPLE

    UPDATES AT:
    http://www.cdc.gov/od/science/techtran/TechAvailableForLicensing.htm
    MYCOBACTERIAL
    Tuberculosis
    Identification of M. Tuberculosis Proteins as Mucosal Vaccine Candidates
    Against TB.........................................................23
    SecA Gene of Mycobacterium tuberculosis and Related Methods and
    Compositions..............................................................23
    A Method for the Rapid Diagnosis of Infectious Disease by Detection and
    Quantification of Microorganism Induced
    Cytokines........................................................................................................
    ........................................................24
    Antibiotics Against Resistant Strains of M. Tuberculosis and Methods for
    Producing Them..................................................24
    MYCOTIC
    Aspergillus
    Development and Validation of a Microsphere Luminex-Based Assay for Rapid
    Detection of Clinically Relevant Aspergillus
    species...................................................................................................
    ............................................................24
    Development of DNA Probes to Identify Aspergillus
    Species.............................................................................................
    .....24
    The Production of Cross-Reactive Monoclonal Antibodies Against Aspergillus
    and Penicillium Species..............................24
    Detection
    Development of DNA Probes to Detect Fungal Pathogens Using a Multi-Analyte
    Profiling System......................................25
    Histoplasma capsulatum
    Development of an Antigen-Capture ELISA Using Rabbit Polyclonal Antibody
    to Detect Histoplasma Capsulatum Antigen in Physiological
    Specimens......................................................................................
    ...........................25
    Nucleic Acids of the M Antigen Gene of Histoplasma, Isolated and
    Recombinant-Produced Antigens, Vaccines and Antibodies, Methods and Kits for
    Detecting
    Histoplasmosis.........................................................................................25
    Rapid and Sensitive Method for Detecting Histoplasma
    capsulatum.......................................................................................
    25
    Stachybotrys chartarum
    Monoclonal Antibodies against Fungi and Methods for Their
    Use..........................................................................................
    .26
    PARASITIC
    Cryptosporidium parvum
    Methods for Detecting Cryptosporidium parvum
    Oocysts...................................................................................................
    .....26
    Reagent and Method for Detecting Cryptosporidium parvum
    Oocysts.....................................................................................26
    Malaria
    Colorimetric Assay for Artemisinin
    Derivatives........................................................................................................
    ..............26
    Counterfeit Drug
    Buster...............................................................................................................................
    ............................27
    Compositions and Methods for Inhibiting Transmission of
    Malaria.......................................................................................
    ..27
    An Improved Recombinant Multivalent Malarial Vaccine Against Plasmodium
    Falciparum..................................................27
    Recombinant Multivalent Malarial Vaccine against Plasmodium
    falciparum..........................................................................27
    Taenia solium
    Isolation of Diagnostic Glycoproteins to Taenia solium, Immunoblot-Assay
    and Method for the Detection of Human
    Cysticercosis......................................................................................................
    ......................................................27
    Compositions and Methods for Detecting Adult Taenia
    solium............................................................................................
    ...28
    Methods and Compositions for Detecting Larval Taenia solium with a Cloned
    Diagnostic Antigen.......................................28
    T24 Antigen for Immunodiagnosis of Taenia Solium
    Cysticercosis........................................................................................
    .28
    Trichomonas Vaginalis
    Efficacy of Dicationic Compounds Against Trichomonas
    Vaginalis........................................................................................2
    8
    RICKETTSIAL
    Ehrlichia
    Growing Ehrlichia Species in a Continuous Cell
    Line...................................................................................................
    ...........28
    Identification of a New Ehrlichia Species from a Patient Suffering from
    Ehrlichiosis.............................................................29
    Identification of a
    New...............................................................................................................................
    ..............................29
    Identification of a New Ehrlichia Species from a Patient Suffering from
    Ehrlichiosis.............................................................29
    Identification of a New Ehrlichia Species from a Patient Suffering from
    Ehrlichiosis.............................................................29
    Use of Human Immortalized Endothelial Cells to Isolate and Propagate
    Ehrlichia chaffeensis and Ehrlichia canis...............29
    Use of Human Immortalized Endothelial Cells to Isolate and Propagate
    Ehrlichia chaffeensis and Ehrlichia canis...............30
    Novel Granulocytic Ehrlichia Genes and Uses
    Thereof....................................................................................................
    .......30
    SOFTWARE
    Family Healthware - Assessment, Classification, and Intervention
    Guide................................................................................
    30
    Spatial Random Sampling Using GPS Receivers and Handheld
    Computers............................................................................30
    GSA Rent Data Download Tririga Component (Tririga 8i Software Add-on
    Component)......................................................31
    Page 5
    SAFER • HEALTHIER • PEOPLE

    UPDATES AT:
    http://www.cdc.gov/od/science/techtran/TechAvailableForLicensing.htm
    SEXUALLY TRANSMITTED DISEASES
    Chlamydia
    Methods and Compositions for the Simultaneous Detection of Multiple
    Analytes..................................................................31
    Syphilis
    Attachment of Cardiolipin to Protein for Development of Non-Treponemal
    Antibody Assays...............................................31
    DNA Polymerase from Treponema
    pallidum................................................................................................................
    ...........31
    Compositions and Methods for Detecting Syphilis Using Synthetic
    Antigens.........................................................................32
    Compositions and Methods for Detecting Treponema
    pallidum.............................................................................................
    ..32
    Immunological Immobilization of Cardiolipin Antigen to a Solid
    Support..............................................................................32
    Herpes Virus
    Novel Baculovirus Expression Vectors and Recombinant Antigens for
    Detecting Type-Specific Antibodies to Herpes Simplex
    Virus......................................................................................................
    .....................................................32
    Novel Baculovirus Expression Vectors and Recombinant Antigens for
    Detecting Type-Specific Antibodies to Herpes Simplex
    Virus.....................................................................................................
    ......................................................32
    VETERINARY
    Cat-Scratch Disease
    Methods and Compositions for Diagnosing Cat-Scratch Disease and Bacillary
    Angiomatosis Caused by Bartonella
    henselae..............................................................................................................
    ................................................33
    Compositions for Diagnosing Bartonella henselae and Bartonella quintana
    Infection............................................................33
    Nucleic Acids Specific for Bartonella
    quintana........................................................................................................
    ...............33
    Nucleic Acids of Bartonella henselae and Methods and Compositions for
    Diagnosing Bartonella henselae and Bartonella quintana
    Infection......................
    .........................................................................................................................33
    Nucleic Acids of Bartonella henselae and Compositions for Diagnosing
    Bartonella henselae and Bartonella quintana
    Infection.......................................................................................................
    ..........................................................34
    Composition to Protect a Mammal against Bartonella henselae
    Infection...............................................................................34
    Canine Influenza
    Mouse Monoclonal Antibodies Specific for the H3 Hemagglutinin of Canine
    Influenza Virus...............................................34
    Chlamydiosis
    Genotyping of Chlamydophila psittaci using Real-time PCR and High
    Resolution Melt analysis...........................................34
    Diagnostic Methods
    Use of Biotin to Conjugate Antibodies in Serum Samples to Enable Detection
    of Antigen-specific Antibodies in Species for Which Species-specific
    Secondary Antibody Conjugates are Commercially
    Unavailable.................................34
    Rabies
    Development of Vaccines for the Oral Immunization of Mongoose (Herpestes
    auropunctatus) against Rabies......................35
    Raccoon Poxvirus as Gene Expression and Vaccine Vector for Genes of Rabies
    Virus and Other Organisms........................35
    VIRAL
    Adenovirus
    Real-Time TaqMan® PCR for Human Adenovirus Type
    4.....................................................................................................
    .35
    Astrovirus
    Nucleic Acids Encoding Human Astrovirus Serotype 2 and Uses
    Thereof..............................................................................35
    Bocavirus
    Real Time TaqMan PCR Assays and Positive Control for Human
    Bocavirus..........................................................................35
    Ebola
    Vaccination Method to Protect Against Ebola
    Virus.....................................................................................................
    ...........36
    Immunization for Ebola Virus
    Infection................................................................................................................
    ..................36
    Mutant Form of Ebola Virus - Pseudotyped Retrovirus
    Vectors...........................................................................................
    ....36
    Recombinant Infectious Molecular Clone of a Simian Foamy Virus (SFV)
    Expressing a Truncated form of the Ebola Virus Glycoprotein
    Gene............................................................................................
    ................................................36
    Enterovirus
    Detection and Identification of Nonpolio
    Enteroviruses................................................................................................
    ...........36
    Typing of Human Nonpolio
    Enteroviruses................................................................................................................
    ..............37
    Sensitive, Semi-nested PCR-Amplification of VP1 Sequences for Direct
    Identification of Enteroviruses Serotypes from Orical
    Specimens.............................................................................................
    ............................................................37
    Flavivirus
    Nucleic Acid Vaccines for Prevention of Flavivirus
    Infection..........................................................................................
    ........37
    Nucleic Acid Vaccines for Prevention of Flavivirus
    Infection..........................................................................................
    ........37
    Page 6
    SAFER • HEALTHIER • PEOPLE

    UPDATES AT:
    http://www.cdc.gov/od/science/techtran/TechAvailableForLicensing.htm
    Hantavirus
    Nucleic Acid of a Novel Hantavirus and Reagents for Detection and
    Prevention of Infection.................................................38
    Nucleic Acids of a Novel Hantavirus and Reagents for Detection and
    Prevention of Infection...............................................38
    Black Creek Canal Hantavirus and Related
    Methods......................................................................................................
    ..........38
    Bayou Hantavirus and Related
    Methods..................................................................................................................
    ................38
    Hepatitis
    Systemically Delivered Nano-immunolipoplex Vaccine for Prevention/Therapy
    of Hepatitis C Virus (HCV).......................39
    Antigenically Reactive Regions of the Hepatitis A Virus
    Polyprotein...................................................................................
    ...39
    Neutralizing Immunogenic Hepatitis E Virus
    Polypeptides...............................................................................................
    .......39
    Synthetic Peptides Immunoreactive with Hepatitis A Virus
    Antibodies...................................................................................
    39
    Mosaic Protein and Restriction Endonuclease Assisted Ligation Method for
    Making the Same..............................................39
    Mosaic Protein and Restriction Endonuclease Assisted Ligation Method for
    Making the Same..............................................40
    Antigenic Epitopes and Mosaic Polypeptides of Hepatitis C Virus
    Protein..............................................................................4
    0
    HIV
    Development of a Rapid Assay for the Extraction, Amplification and
    Detection of Human Immunodeficiency Virus Nucleic
    Acid........................................................................................................
    .......................................................40
    Detection of HIV-1 p24 Antigen and HIV Specific Antibodies Using a Rapid,
    Paramagnetic Lateral Flow Assay................40
    Utilization of loop-mediated isothermal amplification (LAMP) for the
    Detection of HIV-1 Infection....................................40
    Soluable Human Dendritic Cell Specific ICAM-3 Grabbing Non-Integrin
    (shDC-SIGN).......................................................41
    A Simple Assay for Detecting Recent HIV-1 Infection and Estimating
    Incidence...................................................................41
    Development of a Chimeric Recombinant HIV-1 Envelope Protein Derived from
    Immunodominant Region (IDR) of Multiple
    Subtypes.......................................................................................................
    .....................................................41
    Method and Kit for Detecting Resistance to Antiviral
    Drugs............................................................................................
    .......41
    Method and Kit for Detecting Resistance to Antiviral
    Drugs............................................................................................
    .......41
    Methods and Compositions for Inhibition of Viral
    Replication..........................................................................................
    ......41
    Methods and Reagents for Molecular Detection of HIV-1
    Groups..........................................................................................
    .42
    Cytotoxic T Cell (CTL) Epitopes of HIV (Subtype E): Reagents for Research,
    Drug Studies and HIV Vaccines...................42
    Development of a HIV-1 Multi-Clade, Multivalent (HIV1MCMV) Recombinant
    Vaccine Construct....................................42
    Development of a Rapid HIV Diagnostic Assay for Diagnosis and Detection of
    Recent and Long Term HIV-1
    Infection...................................................................................................................
    .............................................................42
    Development and Characterization of Large Volume Panels of Plasma, PMBC,
    and DBS from HIV Strains from West
    Africa...............................................................................................................
    ............................................................43
    Multiple Antigenic Peptide Assay for Detection of HIV or SIV Type
    Retroviruses.................................................................43
    RAB9 and Uses Thereof Related to Infectious
    Disease...................................................................................................
    .........43
    Simple, Rapid, and Sensitive Real-Time PCR Methods for Detecting Drug
    Resistance in Human Immunodeficiency Viruses
    (HIV).........................................................................................................
    ...............................43
    Recombinant Infectious Clone of Simian Foamy Virus (SFV) Expressing HIV-1
    gp 120 for Vaccine Purposes....................44
    Prevention of Rectal HIV
    Transmission..................................................................................................................
    .................44
    Human Papillomavirus
    Human Papillomavirus (HPV) Variant Assignment by
    Pyrosequencing..................................................................................44
    Influenza
    Simultaneous Detection and Quantification of Influenza Proteins in Complex
    Matrices.........................................................44
    Mouse Monoclonal Antibodies Specific for the H5 Hemagglutinin of Avian
    Influenza Virus................................................44
    Enhancing Disease Resistance against RNA Viral
    Infections.............................................................................................
    ......45
    High Growth Reassortant Avian Influenza Virus with an Avirulent
    Hemagglutinin................................................................45
    Preparation and Use of Recombinant Influenza A Virus M2 Constructs and
    Vaccines............................................................45
    Primer and Probes for Detection and Discrimination of Types and Subtypes
    of Influenza Viruses by Real-Time
    RT-PCR................................................................................................................
    ................................................................45
    Lymphotropic
    A Novel Simian T-cell Lymphotopic Virus, Designated
    STLV-5............................................................................................
    46
    Novel Human T-Cell Lymphotropic Virus, Designated
    HTLV-3.............................................................................................4
    6
    Measles
    Measles Virus Specific Antibody Detection Using Recombinant Measles
    Proteins.................................................................46
    Norovirus
    A Monoclonal Antibody (McAb-NoV) Which is Cross-Reactive to at Least 2
    Genogroup I Strains and 8 Genogroup II Strains of Noravirus in the Family
    Caliciviridae...................................................................
    ..........................46
    Orthopoxvirus
    Rapid Protein-Based Diagnostic Test System that Can Detect Exposure to or
    Presence of Orthopoxviruses..........................46
    Page 7
    SAFER • HEALTHIER • PEOPLE

    UPDATES AT:
    http://www.cdc.gov/od/science/techtran/TechAvailableForLicensing.htm
    Monoclonal Antibodies Specific for Variola
    Virus......................................................................................................
    .............47
    Diagnostic Assay for Orthopoxviruses Other than
    Variola...............................................................................................
    ........47
    Diagnostic Assay for
    Cowpox...........................................................................................................................
    .......................47
    Therapeutic Treatment of Poxvirus
    Infections..........................................................................................................
    ...............47
    Parechovirus
    Three Parechovirus Diagnostic Assays Utilizing Real Time Taqman or
    Seminested RT-PCR................................................47
    Poliovirus
    Modulation of Poliovirus Replicative Fitness by Deoptimization of
    Synonymous Codons......................................................48
    Rabies
    Simplified Method for Whole Genome Sequencing of
    Lyssaviruses........................................................................................4
    8
    Vector for Recombinant Poxvirus Expressing Rabies Virus
    Glycoprotein...............................................................................48
    Method of Sequencing Rabies Whole Genome and its Application in Vaccine
    Development.................................................48
    Retrovirus
    Methods for Sensitive Detection of Reverse
    Transcriptase..............................................................................................
    .........49
    Methods for Sensitive Detection of Reverse
    Transcriptase..............................................................................................
    .........49
    Method and Kit for Detecting Resistance to Antiviral
    Drugs............................................................................................
    .......49
    Compositions, Methods and Devices for Detection of Retroviral
    Infection..............................................................................4
    9
    Methods and Devices for Detection of Xenogenic Graft
    Persistence......................................................................................
    ..49
    Respiratory Syncytial Virus
    Real-Time TaqMan® RT-PCR for Human Metapneumovirus, Human Parainfluenza
    Virus 1; 2; and 3, and Human Respiratory Syncytial
    Virus..................................................................................................
    ................................................50
    Compositions and Methods for Modulating RSV Infection and
    Immunity..............................................................................50
    CD40 Ligand Adjuvant for Respiratory Syncytial
    Virus..................................................................................................
    ........50
    Macroaggregated Albumin-Polyethylenimine (MAA-PEI) Lung-Targeted Delivery
    of RSV DNA Vaccines.........................50
    Rhinovirus
    Real-time TaqMan RT-PCR Assays for Human
    Rhinovirus...................................................................................................
    ..50
    Rift Valley Fever Virus
    Development of Rift Valley Fever Virus Vaccines Utilizing Reverse
    Genetics.......................................................................51
    Development of a Pan-Rift Valley Fever Virus Real-Time Quantitative RT-PCR
    Diagnostic Assay......................................51
    Rotavirus
    Novel Method to Inactivate
    Retrovirus.................................................................................................................
    ...................51
    Rotavirus Strain
    G9P11................................................................................................................................
    ............................51
    New Parenteral Human Rotavirus Vaccine Strains CDC-6, CDC-7, CDC-8, and
    CDC-9.......................................................51
    New Human Rotavirus Vaccine Strains - CDC-66 and
    CDC-81..............................................................................................5
    2
    SARS
    Novel Coronavirus Isolated from
    Humans................................................................................................................
    ...............52
    West Nile Virus
    Humanized Murine Monoclonal Antibodies for Arboviral
    Serodiagnosis................................................................................52
    Duplex Microsphere Based Immunoassay for Detection of Anti-West Nile Virus
    and Anti-St. Louis Encephalitis Virus, Immunoglobin M. Antibodies, and
    Development of
    Software...................................................................................52

    Follow the Money

    Petition–Change the way media portrays our disease!

     
    once we have signatures on the petition, we can present it to the media along with other literature in the form of a media packet.   The media packet will include:
    • The signed petition
    • An introductory letter to the media
    • Half a dozen case studies with photos
    • A short guide to the different definitions
    • A brief description of some of the most severe symptoms of our disease
    • A comprehensive list of groups such as IMEA, ANIDA, the MECFSForums Wiki, the new CFSUntied Resource Center, ME and CFS literate doctors, and patients that can be used as sources of information.

    San Francisco ME/CFS talk -- April 19

    In a message dated 4/13/2011 11:14:38 A.M. Pacific Daylight Time, tomkindlon@OCEANFREE.NET writes:
    [A doctor with ME/CFS has asked me to post this for them. Please forward far and wide. Tom]

    Dr. Kogelnik, the Infectious Disease doctor who did the groundbreaking work with Jose Montoya on anti-virals and Chronic Fatigue Syndrome up at Stanford will be doing a free talk on CFS. He has asked people to come out to show the hospital that there is strong community interest. It would be great if you could make it. Here are the details.

    Quote from Dr. Kogelnik: For those of you who are local and interested...I've been asked to do a 30 min talk on CFS with Q and A by the Women's Hospital at El Camino Hospital's Mountain View campus. For most patients who've seen me in the clinic - a lot of this will be review. All are welcome. Please come if you can as it would be nice to show the hospital that there is a strong community interest for this topic.

    El Camino Women's Hospital -
    Lunch N Learn: "Re-evaluating Chronic Fatigue Syndrome and Immunology"
    Tuesday, April 19 12:30 – 1:30pm
    El Camino Hospital Main Hospital, conference room G

    http://www.elcaminohospital.org/Locations/About_El_Camino_Hospital_Mountain_View
    i.e.
    http://bit.ly/eYoafJ
     

    Parenting When You Have Fibromyalgia

    In a message dated 4/14/2011 2:14:43 A.M. Pacific Daylight Time, newsletter@endfatigue.com writes:

    Parenting When You Have Fibromyalgia

    Dear Readers,

    It is hard enough taking care of yourself and your relationship with your spouse when you have fibromyalgia. But sometimes it breaks womens' hearts as they worry about the effect on their children. The good news? It's been my experience that fibromyalgia in parents usually results in their children feeling even more loved and closer to their parents!

    You may wonder how you can explain having fibromyalgia to your children without scaring them. Simply let your children know that you have a problem, but that it isn't dangerous. It just leaves you feeling tired and achy sometimes – kind of like when you have a cold or flu. So you can't do everything you'd like to do.

    Feeling like they can't be there for their children is one of the hardest things many women with fibromyalgia fear. What I have found in treating thousands of women is that the fibromyalgia actually results in their having a closer and very loving relationship with their kids – because the Mom actually spends more time at home with the children, in settings that are warm and close such as reading a book or watching a movie with them. Because of this, I've seen that the children of women with fibromyalgia usually feel very close to their Moms, feel very loved, and do just fine!

    As for your duties to your family, it's important to remember that if you don't take care of yourself first, you won't have anything left to give anyone else. Your body has a "use it or lose it" approach to efficiency. Because of this, if you don't stay somewhat active, you'll decondition and lose function. Do a walking program, but only to a level that feels comfortable. Use a pedometer to monitor your progress. Begin at a level that is comfortable (even if it's walking just a minute or 2) and aim over time to get to the 10,000 steps a day level.

    In addition, Yoga and Tai Chi have both been shown to be very effective in helping to decrease pain and increase function in women with fibromyalgia – so these are also highly recommended. For the few of you that are too ill to even walk for a few minutes a day, starting with exercises in a warm water pool, which increases your buoyancy, can increase conditioning to where you can advance to walking and then more active exercises.

    Taking care of yourself is a key to having energy for your kids. Having 5 children myself, I'll offer one more thought. If your children know that they are unconditionally loved, they will do just fine - no matter what! And your ability to love your children is something the fibromyalgia can't take away ;-)

    Love & blessings,

    Dr. T

    RESEARCH BRIEFS  

    Treating Fibromyalgia with Trazodone

    This study evaluates treating fibromyalgia through the use of trazodone, a non-addictive medication that helps you sleep in low doses (25-75 mg at night instead of the usual 300-450 mg dose). Read more »

    Chocolate Shown to Improve Mood and Brain Function

    Is that why people who eat chocolate tend to be happy and smart ;-)? Read more »

    FEATURED SUPPLEMENT  

    Coenzyme Q10 (CoQ10) 200 mg Chews - Chocolate or Maple Nut Flavor

    http://go.rm0001.net/rmgo.asp?tid=3614680&eid=17203&sb_id=729245
    30% Off
    This week $39.95 $27.95
    http://go.rm0001.net/rmgo.asp?tid=3614680&eid=17203&sb_id=729245
    Chocolate, OR
    http://go.rm0001.net/rmgo.asp?tid=3614682&eid=17203&sb_id=729245
    Maple Nut

    Coenzyme Q10 is critical for the electron transport system (ETS) to do its job of harvesting over 75 percent of the ATP energy from food. Because of this, it is very important in energy production. Although CoQ10 is found in the diet, it can become depleted during periods of excessive energy demands. Levels of Coenzyme Q10 are also significantly lower in women who use oral contraceptives and other estrogens.

    Supplementing with CoQ10 is especially important if taking cholesterol-lowering prescriptions (e.g., Lipitor) as most cholesterol-lowering drugs deplete your CoQ10 levels. This is especially tragic because this deficiency can aggravate both the pain and decreased heart function seen in CFS/fibromyalgia. It can also worsen the congestive heart failure (CHF) seen in patients with heart disease - and doctors are largely unaware of this, simply blaming it on the heart disease.

    In addition to helping energy and heart function, studies have demonstrated that Coenzyme Q10 can:

    • Enhance immune function.
    • Assist weight loss when dieting.
    • Decrease the frequency of migraine headaches.
    • Raise low sperm counts.
    • Help slow Parkinson's Disease.
    • Improve exercise tolerance in sedentary people.
    • Decrease allergies.

    For an outstanding morning energy cocktail, take the Coenzyme Q10 (200 mg) along with Ribose (Corvalen) 5 gm and the Energy Revitalization System vitamin powder. Give this combo 3 weeks, and prepare to be amazed!

    FEATURED QUESTIONS FROM READERS  

    Q: I have fibromyalgia and an elevated ANA (anti-nuclear antibody) blood test level of 1:160. What does this mean? Read more »

    COOL STUFF  

    Nostalgia Time - Remembering the 50's

    50's Nostalgia

    For those of you who remember and for those who missed out on the experience of the 50's, this is one of the best nostalgia video's I've ever seen. It's simple, but really brings out old memories. And if you weren't from this generation - well, listen and eat your hearts out. It was one of the best of times.

    Watch video »

    QUOTE OF THE WEEK  

    Destiny Awaits Us

    "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us."
    - Joseph Campbell

    [June H, who sent this to us, adds: I love this, especially because of the huge changes in my life because of CFS/FM/IBS. I attach it to all emails and have it written out in my journal. When I read it, it reminds me that the life I had planned is no longer going to happen, but perhaps there is a better, new life waiting for me!]

    ........

    We thank June H for this week's quote. June wins her choice of a free bottle of Corvalen or Energy Revitalization System vitamin powder. We invite you to email us your favorite jokes or quotes. If we use it, you'll win your choice of either of these.

    Wednesday, April 13, 2011

    Making temporary changes to brain could speed up learning | Science

     

    "In a breakthrough that may aid treatment of learning impairments, strokes, tinnitus and chronic pain, UT Dallas researchers have found that brain nerve stimulation accelerates learning in laboratory tests."

    Suit Alleges Bias in Disability Denials by Queens Judges

    Suit Alleges Bias in Disability Denials by Queens Judges
    By SAM DOLNICK
    Published: April 12, 2011

    The Queens office that hears appeals of Social Security disability
    cases is well known to lawyers, judges and many other New Yorkers as
    an inhospitable place to seek benefits.

    It has had the 10th-highest rejection rate among 166 offices across
    the country this fiscal year. Lawyers say many applicants have been
    reduced to tears by harsh questioning from the administrative law
    judges who hear the appeals; some lawyers have advised their clients
    to rent apartments or move to homeless shelters in other boroughs so
    they can plead their cases elsewhere.

    And federal judges have rejected scores of the Queens rulings in
    recent years, complaining of legal errors, "combative" hearings and a
    tone that one court called "brusque, intemperate and unhelpful."

    Now, a class-action lawsuit filed on Tuesday in Federal District Court
    in Brooklyn says that five of the eight Queens judges are not just
    difficult, but also biased against the applicants — many of whom are
    poor or immigrants — and have systematically denied benefits to the
    disabled by making legal and factual errors...

    ...Together, the five have rejected an average of 63 percent of the
    cases they have heard in the fiscal year that began in September,
    compared with a national average of 36 percent, according to an
    analysis of data by The New York Times...The Queens office, in a
    federal building in the Jamaica section, had the nation's
    third-highest rejection rate from 2005 to 2008, according to a
    separate analysis by The News Journal, a Delaware newspaper, that is
    cited in the lawsuit.
    The Times's analysis found that the rejection rate for the entire
    Queens office, 50.9 percent, was the highest in New York State, and
    far higher than in other New York City boroughs; in the current fiscal
    year, Manhattan has an average denial rate of 37 percent, the Bronx 33
    percent, and Brooklyn 14.5 percent.

    The Queens office also ranked fifth in the nation for the percentage
    of its decisions that were sent back for rehearing in the 2007 fiscal
    year, according to an audit by the Social Security Administration's
    inspector general.

    ...Mr. Frye said the adversarial tone cited in the lawsuit was common
    in disability offices, and "part of the process."
    But federal judges who have reviewed the Queens cases have disagreed.
    In remanding a 2005 case, Judge Dora L. Irizarry said the transcript
    offered "a study in combative questioning, which hampered the
    truth-seeking process."

    In that case, Joan Ginsberg, who had worked for years as a freelance
    proofreader and copy editor, sought benefits after her doctor
    diagnosed chronic fatigue syndrome. But the Queens judge, Mr.
    Nisnewitz, said he was skeptical of the doctor's credentials and
    refused to speak with the physician, even though judges'
    responsibilities include contacting medical experts.
    "I'm not going to call her," he said in the hearing. "I don't make
    calls. I don't do that."

    The full article can be accessed at:
    http://www.nytimes.com/2011/04/13/nyregion/13disability.html?_r=2&partner=rss&emc=rss

    Pat Fero's latest info on CFS Research Funding

    SoK videocast now available

    FYI:  The video of both days of the State of the Knowledge Workshop on ME/CFS Research (April 7-8, 2011) has now been uploaded to the NIH VideoCast Past Events page:  http://videocast.nih.gov/PastEvents.asp

     

    With regards, Dennis

     

    Dennis F. Mangan, Ph.D.

    Chair, Trans-NIH ME/CFS Research Working Group

    April 7/8 NIH State of Knowledge Conference - watch online to show

     
    By Rich van K

    Tuesday, April 12, 2011

    HHS takes aim at medical errors, health care costs

     
    According to a newly released study in Health Affairs, one in three patients hospitalized suffer some sort of medical error or adverse event, and approximately one in  20 get a hospital related infection.  According to the Centers for Disease Control and Prevention, each year, nearly 2 million Americans get an infection when hospitalized.  More than a decade ago, the Institute of Medicine found that up to 98,000 patients die each year as a result of medical errors.
     
    "We've known for years that millions of Americans are unnecessarily harmed in the hospital every year from preventable infections and other medical errors," said Lisa McGiffert, director of Consumers Union's Safe Patient Project.

    Twenty Years and Counting: NIH SoK: The Good, the Bad, and the Ugly

    "we have progressed from the Dark Ages to the Middle Ages, with no one seemingly to recognize we are in the Twenty-first century."
     

    Scientists Study How Retroviral Genes May Play a Role in Lymphoma

    Scientists Study How Retroviral Genes May Play a Role in Lymphoma and Other Diseases - WSJ.com  Unlike other kinds of viruses, retroviruses copy their own genes into a host's DNA. Some of the retroviruses are believed to have infected sperm cells and eggs, ensuring the virus would be passed from generation to generation in the genome.
     
     
    "There is more virus in us than there is us in us,'' he says.
     

    The trouble seems to start when the old retrovirus genes—broken down and disabled over time, and silent in healthy people—are hijacked, turned on again or put to a new use. "Retroviruses inserting themselves into our genome—or hijacking copies of other genes to insert in our genome—wreak havoc,'' says Stephen Tapscott of the Fred Hutchinson Cancer Research Center, part of a team that published a paper last year on the link between the ancient process and why some people get a common type of muscular dystrophy.

    In healthy people, one particular ancient retrovirus is barely detectable, but in HIV patients who also have lymphoma, the virus is found in high levels. The researchers think in some patients, HIV stirs things up, "turning on DNA that in healthy people is usually dormant,'' says Mark Kaplan of the University of Michigan, who has been studying the old viruses in people with HIV and HIV lymphoma.

    The researchers will see if the old retrovirus gene is activated in those who developed chronic fatigue syndrome compared with those who didn't. If a connection is demonstrated, therapies could be developed to turn off the old retrovirus gene. "The idea is that if you don't have chronic stimulation then the symptoms would go away,'' Dr. Huber says.

    Monday, April 11, 2011

    CFS Central: YOU'RE IT

     
    Dear Dr. Coffin,
    I was sitting near you at the State of Knowledge NIH Workshop when you said that the patients' online comments about you were "painful."  As the mother of a 25-year-old young woman who has been fully disabled with ME/CFS for ten years, and affected since childhood, I would like to tell you a little bit about "painful." ...
     
    Lilly later clarifies:
    I was sitting about eight feet away from the podium. I could see and hear very well. Dr. Coffin was indeed talking about his own hurt feelings.
     
    * * *
    Gee, I'm sorry his feelings were hurt.
     
    Does anyone ever care about OUR feelings when they make derogatory and accusatory statements?
     
    You're lazy, you're crazy, you just want to quit your job and live on the dole...  Does he think those are not hurtful to people who worked until they collapsed?
     
    If they ever looked on the rude things that have been said to patients, they'd realize we're not emotional basket cases who can't handle a little stress -- we're strong people who've put up with a lot of sh** and verbal abuse when all we wanted was someone to help us feel better.
     
    77% of CFS patients report a bad interaction with at least one doctor.  "They came to a doctor with Chronic Fatigue Syndrome; they left the doctor with PTSD." - Nancy Klimas, M.D., Miami Herald, March 24, 2009  We may go home and cry for a while, or whine to Mom after some doctor has verbally abused us, but then we pick up the pieces and go on.

    Sunday, April 10, 2011

    Transcript of Mikovits talk at NIH Workshop 04/07/11

    The Stigma of Chronic Fatigue Syndrome | Psychology Today

    When doctors ask what's wrong with me, I can give one of two answers, neither of which is satisfactory in the context of obtaining quality health care for myself and others with CFS. That leaves me in a no-win position in the doctor's office.

    Option #1: If I say, "I have Chronic Fatigue Syndrome," I'm likely to be discredited as a witness to my own condition. I've had doctors tell me there's no such thing as Chronic Fatigue Syndrome. One doctor said: "Just drink some coffee."

    Option #2: If I say, "I contracted a serious viral infection and never recovered," it goes down better, but by saying this, I'm undermining the effort to bring legitimacy to the illness. Legitimacy means research money

    ... "What's the diagnosis?" I was cornered. "Chronic Fatigue Syndrome," I said. I watched him disengage from me. He swiveled on his stool, put his note pad down, turned back to me as if we'd just met and said: "What have you come to see me about today?"

    On March 11th, Dr. Montoya said in a talk at Stanford University that it was his dream that the medical community would someday produce a formal apology to patients for not believing them all these years when they said they were facing a real illness.

    Millions of us share your dream, Dr. Montoya.

    * * *

    You're not alone.  I also have had doctors change their opinion of me as soon as I say CFS.  I'm no longer physically ill (no matter what their eyes tell them) -- I'm just depressed and they don't have to listen to any other symptom I bring up.  Whatever it is, it's psychosomatic.  No tests, no x-rays, it's all in my head.  I was even imagining the pain from three fractured vertebrae.

    The good news is, we now have two bulldogs in Dr. Judy and Annette Whittemore fighting for us.  If an apology is to be had, those two will get it for us.

    Moms on a Mission

    Help advocate for children for Awareness Day, May  12th!

    The National MOMS ON A MISSION (MOM) has raised funds  through their "Cents
    for CFIDS" campaign to enable advocates a chance to  identify more children
    with CFIDS/ME.  Last year, distributing booklets to  school nurses in their
    towns helped identify children who were  misdiagnosed.  MOM raised enough
    money this year to offer the booklet  "Guidelines for Schools: Understanding
    and Accommodating Chronic Fatigue and  Immune Dysfunction Syndrome and
    Fibromyalgia (CFIDS/FMS) to the first 30  nonmembers who reply to the National
    CFIDS Foundation, Inc. so that  they may distribute them to the schools in
    their area. 

    All is needed is the advocates name and regular address so  that the number
    of booklets requested may be sent out by the USPS within the  United
    States.  The number of booklets will be sent when you let us know  how many
    schools are in your town or district enabling you to distribute  one to each
    school.

    One mother from MOM said the problem begins with getting a  diagnosis and
    the consequences can be frightening.  She wrote,

       "It took three years and referrals to 5  specialists before my child was
        diagnosed and, by then, the school system  had labeled Michael as
        depressed and school phobic, filed against  me for neglect of my child's
        education and we got a 'no finding', they  took him to court as a
    truant.
        It was so confusing.  One symptom  would leave and three others would
        appear or reappear.  None were  that unique, but they were so very
        intense.  And we were the lucky ones  with good medical coverage to
        keep pursuing it!  No child has the  resources to pursue this on their
    own
        and Michael was too young to be able to  explain his complaints!"

    MOM wants advocates to know that the children with CFIDS/ME  are counting
    on you to help. Last year, there were eleven children identified  that they
    heard about who had not been diagnosed correctly.  MOM  is hoping to make
    that number higher this year but considers just one child  helped a major
    success.  The National CFIDS Foundation continues to offer  their "children's
    packet", consisting of over 30 pediatric medical journal  articles, for parents
    to help with individual advocacy with  the children.

    For better health,
    Gail Kansky
    President, National CFIDS Foundation, Inc.
    103 Aletha Rd.
    Needham, MA 02492-3931
    781-449-3535
    _http://www.ncf-net.org_ (http://www.ncf-net.org) 

    Dr. Jason's presentation at SoK Conference

    Extracts from Professor Leonard Jason's Presentation at the NIH State
    of the Knowledge Workshop on ME/CFS

    Bethesda, Maryland,  7th-8th April 2011


    Margaret Williams                       9th April 2011


    At the National Institutes of Health "State of the Knowledge" (SOK)
    Workshop on ME/CFS held in Bethesda, Maryland on 7th-8th April 2011,
    Professor Leonard Jason from DePaul University, Chicago, gave a
    hard-hitting presentation, repeatedly emphasising the absolute
    necessity for researchers to be looking at the same disorder.

    He specifically mentioned the UK PACE Trial (carried out by Wessely
    School psychiatrists) and noted the controversy flowing from that
    trial.

    The PACE Trial Principal Investigators (PIs) intentionally sought as
    heterogeneous a cohort of "fatigued" people as possible in order to
    enhance both recruitment to the trial and the alleged
    "generalisability" of the Wessely School's cognitive re-structuring
    and aerobic exercise programme to as many "fatigued" people as
    possible (Trial Identifier:3.6).

    Such intentional heterogeneity obviously captured people with
    affective disorders in which "fatigue" is a prominent feature, yet the
    PIs assert that they were studying patients with "CFS/ME" (which they
    insist is the same disorder as ME/CFS, a complex neuroimmune disorder)
    when their definition of "CFS/ME" has few of the features of classic
    ME/CFS. Indeed, the pathognomonic feature of ME/CFS  --
    post-exertional fatigability with malaise -- is not required in their
    definition of "CFS/ME" which has on-going "fatigue" as the primary
    symptom.

    This deliberate conflating of different disorders by the Wessely
    School has caused dismay amongst international scientists studying
    classic ME/CFS, who at the SOK Workshop emphasised the
    near-impossibility of validating the existing biomarkers when such
    divergent cohorts of subjects are used (for example, by psychiatrists
    with fixed beliefs about the nature of "CFS/ME" who continue to
    disregard the biomedical evidence and the key diagnostic criteria
    contained in the 2003 Canadian Guidelines).

    Despite the fact that the UK Department of Health accepts ME/CFS as a
    neurological disorder of unknown origin, in its recent submission to
    the NICE "consultation" process regarding any necessity to update the
    NICE Clinical Guideline 53 on "CFS/ME" that recommends only CBT/GET
    for people with "CFS/ME", The Royal College of Paediatrics and Child
    Health referred to the disorder as: "a psychological illness with
    physical manifestations" (http://bit.ly.gpdove) and on the Great
    Ormond Street (childrens) Hospital website, "CFS" is categorised as a
    somatic problem: it is placed in "Department of Child and Adolescent
    Mental Health" section and then under "Feeding & Eating Disorders
    Service" is to be found the following: "emotional eating difficulties
    (e.g. food phobias) or in the context of somatic problems such as
    chronic fatigue syndrome"
    (http://www.gosh.nhs.uk/website/gosh/clinicalservices/DCAMH/Homepage?forumid=331851  ).

    In the UK, NHS staff are likely to obtain their knowledge about the
    PACE Trial from the "NHS Choices" Information page on its website
    (http://www.nhs.uk/news/2011/02February/Pages/therapies-moderately-improve-CFS.aspx ).

    Perhaps unsurprisingly, this website contains frank misinformation
    about the results of the PACE Trial; for example, the PACE Trial was
    not a "controlled" trial as claimed; the Oxford criteria are not
    "standard diagnostic criteria for CFS" when "CFS" is deemed to include
    ME -- they are used only by the Wessely School who produced them in
    1991; PACE participants were not "confirmed as free of mental health
    problems such as depression and anxiety"
    ; participants did not meet
    the (proposed) "London Criteria" for myalgic encephlaomyleitis, but a
    version compiled by the Chief PI (Professor Peter White) himself,
    which was basically the Oxford criteria without psychiatric illness;
    SMC (specialist medical care) was not universally provided by a doctor
    "with specialist experience in CFS"; 22 of these "experienced
    specialists" were in fact trainees (all from the same centre) who, by
    virtue of being trainees, could not be called experts experienced in
    the medical care of people with CFS.

    Thus despite hollow assurances from the Department of Health, the
    grass roots situation in the UK remains dire for people with ME/CFS,
    so the following quotations from Professor Jason at the SOK Workshop
    are of particular relevance to patients themselves and to the various
    agencies of State to which the Wessely School are advisors on
    "CFS/ME":

    "If investigators select samples of patients who are different in
    fundamental aspects of this illness because of ambiguities with the
    case definition, then it would be exceedingly difficult for
    investigators to consistently identify biomarkers".

    "In summary, any scientific enterprise depends on reliable and valid
    ways of classifying patients into diagnostic categories.  When
    diagnostic categories lack reliability and accuracy, the quality of
    the treatment and clinical research can be significantly compromised".

    "If CFS is to be diagnosed reliably across health care professionals,
    it is imperative to deal with criterion variance issues and provide
    specific thresholds in scoring rules for the selected symptomatic
    criteria".

    In the discussion that followed his presentation Jason was emphatic:

    "Those folks who have primarily affective disorder need to be differentiated".

    "I think the key issue is the defining of the sample and in our
    current scientific publications, the basic description of who these
    samples are is completely inadequate, and we've got to do something to
    change that….if we don't tackle that issue…our foundation is just
    going to be shaky".

    During this discussion, Professor Nancy Klimas commented cogently:
    "Here we are, quite some 20 years into this, still talking about the
    bloomin' case definition"; she registered her frustration and pointed
    out that lack of a unified case definition prevents the existing
    biomarkers for neuroimmune disorders being utilised.

    Professor Jason responded:

    "There needs to be a decision as to which are the symptoms and which
    are the tests that we want to use (so that) everybody uses those
    particular symptoms and asks questions the same way – standardised
    questionnaires, and if we can get that accomplished by everybody being
    on the same page with that, I think we would do enormous benefit for
    our field".

    "What I'm really suggesting, because a lot of what we're talking about
    here is biological markers, is that ultimately, if we have samples
    that are different in different labs and have different
    characteristics, it's going to be very difficult for us to get the
    types of consistency of the biological markers…The problem we're all
    faced with is that when we don't get common findings across labs, it's
    very easy for the media – and others – to look at those results and
    not understand the complexities that we're faced with and (they) say –
    oh, you don't find the same abnormalities, you don't find the same lab
    findings, it's not like HIV (where) you find it everywhere….
    ultimately you end up (with it) being thought of as a psychogenic
    illness, and that's the problem.  It's the consequence of
    …attributions being made that I think are not correct".

    At this point, the Editor of the journal "Brain, Behaviour and
    Immunity" asked a question and then agreed to publish such
    standardised criteria in his journal, an undertaking that was
    well-received.

    Professor Jason ended the discussion by referring to the UK PACE Trial:

    "There's tremendous confusion about who's in particular samples.
    Those of you who have been reading about the PACE trial….one of the
    big issues was, was it the Oxford criteria, was it the Fukuda
    criteria, or the international, or the Reeves empiric case definition,
    and I think a lot of controversy came out of that trial in part
    because people were trying to figure out who were their patients, and
    I know that they did some subgroup analyses in that study, but I think
    it's absolutely critical for this diagnostic issue to be tackled
    head-on".

    Will the Wessely School psychiatrists pay any attention to this
    critical issue of diagnostic criteria for ME/CFS or will they persist
    in ignoring the international scientific research community and
    implacably insist that "CFS/ME" is a somatoform disorder that is
    reversible, if not curable, by their own brand of directive
    psychotherapy as they have done for the last 25 years, to the serious
    detriment of both patients and progress in medical science?

    Permission to repost.

                  ---------------------------------------------