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Tag Archives: ESME

Fjernet innlegg om invitasjonene til XMRV/MLV-seminar til helsemyndighetene

Dette innlegget måtte dessverre tas av bloggen av grunner som ikke kan offentliggjøres. Tusen takk til de av dere som brukte av sin energi på å legge igjen en kommentar og beklager at den ble fjernet. Det vil ikke skje igjen.

Mvh

Rutt

Forby ME-pasienter å donere blod i Europa!

Hentet fra European Society for ME:

«The Canadian, Australian and British governments have all banned ME/CFS patients from donating blood. We, the Think Tank panel of ESME, applaud their actions and believe that a similar ban should be issued in all European countries. ME/CFS patients should be banned from donating blood.»

«A study from the Whittemore Peterson Institute detected the XMRV retrovirus in over 95% of the more than 200 ME/CFS, Fibromyalgia and atypical MS patients tested. XMRV closely resembles the HIV virus and is thought to be transmitted in similar ways – through bodily fluids such as blood, semen, and breast milk. Until the connection between XMRV and ME/CFS is fully understood, it is advisable to prohibit blood donations from these patients.»

Les mer av anbefalingen som er skrevet under av alle legene i European Society for ME HER

Hvordan diagnostisere ME

European Society for ME (ESME) skriver på sine Facebook sider:

«Clinical evaluation begins with a thorough history, an extensive clinical examination and laboratory testing. Although standard tests are useful to exclude other possible organic illnesses, they may be inadequate to reveal the distinct abnormalities found in ME/CFS patients. Immune and gastrointestinal dysfunction andinflammatory markers are hallmarks of ME/CFS and it is recommended that specific tests be used. Information about the recommended tests can be found in: ME/CFS: A Clinical Case Definition and Guidelines for Medical Practitioners, Carruthers, van de Sande, 2003 – the so-called Canadian Criteria.»

Les artikkel på ESMEs hjemmesider HER

Blod- og immunologi tester for ME-pasienter

European Society for ME har lagt ut en liste over blod- og immunologi tester som kan være aktuelle å ta hvis du har ME. Disse testene viser ofte store avvik hos ME-pasienter og kan taes på vanlige sykehus.

Normal Blood

  • Full blood account
  • Hemoglobin, Hematocrit
  • Erythrocyte Sedimentation Rate (ESR) ( most of the time very low)
  • Prothrombin Time (PT), Activated Partial Thromboplastin Time (PTT), Fibrinogen
  • Eosinophils (elevated by allergy or parasite infection)
  • CRP
  • Rheumatic factor and/or rheumatic panel
  • ANA antinuclear antibody (slightly increased)
  • Liver panel (ALT, ALP, AST, Bilirubin, Albumin, Total protein, Blood Urea nitrogen, Chloride, Glucose,
  • Renal Panel (Urine acid, Creatinin, Natrium, Potassium, Ureum, Magnesium)
  • Cortisol ( decreased)
  • Blood sugar level or Insulin Levels and Glucose Tolerance test (decreased)
  • Ferritin,
  • CK ( muscle enzyme)
  • Vitamin D
  • Cholesterol ( LDL- C, HDL-C, Triglycerides)

Hormones

  • TSH, T3, T4 (thyroid hormones)
  • Hormones: DHEA, oestrogen, progesterone and testosterone levels, IGFBP-3 / IGF-1  ratio (ratio   greater than 3.5 indicates an IGF-1 deficiency)

Infections:

  • HIV test
  • Nose swap Staphylococci
  • Antistreptolysin O titre
  • Helicobacter antibodies
  • Viral blood test on IgG, IgA, IgM: HSV-1 and 2 (Herpes simplex), HHV-6, 7 and 8, EBV (Paul Bunell), EBV, Varicella
  • IgA, IGM, IgG testing on: Coxsackie virus, Stealth virus, Parvovirus B-19, Entero viruses mainly Cocksackie B virus,
  • ECHO virus
  • IgA, IgM, IgG for Mycoplasma`s infections: M. fermentans, M. pneumoniae, M. hominis, M. penetrans, M. pirum,  M. incognito
  • IgA, IgM, IgG for Chlamydia Pneumonia, Chlamydia Psittaci, Borrelia burgdorferi,Q fever, Bartonella, Parvo virus

Les mer hos ESME HER

Dr. Kerr medlem i Europan Society for ME

Klippet fra European Society for ME (ESME) hjemmeside:

«The European Society for ME (ESME) is pleased to welcome Dr. Jonathan Kerr as an honorary member. Dr. Kerr is a much respected ME/CFS researcher. He has participated in many ME/CFS conferences, where he has presented important findings,especially concerning genomic subtypes in ME/CFS patients.

He currently works at St. George’s University in London where he and his team are examining the role of XRMV in modulaton of NK cell cytotoxicity and NK cell gene abnormalities in ME/CFS patients and normal blood donors.

He is also collaborating with the Whittemore Peterson Institute in a study to develop diagnostic biomarkers in order to predict response to immune modulating therapy and vaccines.»

Les hele artikkelen og mer om Dr. Kerr  her

Banebrytende ME-forskning skal gjøres kjent i Europa!

European Society for ME, med Prof. Dr. Kenny De Meirleir i spissen, vil være med å bidra til at WPIs banebrytende forskning på ME blir kjent i Europa!

ME agenda publiserer følgende:

Dear Whittemore Peterson Institute,

The Scientific Panel, the Board of Directors and the staff of ESME wish to congratulate the Whittemore Peterson Institute on the groundbreaking work they are performing in the area of neuro-immune diseases and especially their work with the XMRV virus. We applaud the thoroughness of your research and the openness with which you are sharing this research information with the world. We believe that by sharing scientific knowledge with this openness, you are starting a new era of scientific cooperation.

ESME would like to help the Whittemore Peterson Institute with information flow in Europe. We have the capacity to professionally translate information to Danish, Dutch, German, Norwegian, French and Spanish and we have a professional website where information can be posted in any of these languages: www.esme-eu.com  

ESME has also established a database of approximately 3000 e-mail addresses of European scientists, doctors, medical associations, national and regional ME associations, politicians, journalists and other people interested in ME/CFS. This database allows us to easily distribute information to professionals in many fields. We will gladly use our resources to assist the Whittemore Peterson Institute with the distribution of information in Europe.

In 2009, ESME held two conferences in Norway to educate healthcare personal (and patients) about the diagnostics, treatment, causes and consequences of ME/CFS. ESME will continue organizing these conferences in the coming years throughout Europe. We would like to invite a representative of the WPI to be a guest speaker at future European conferences to help us inform and train European MD’s and therapists better.

With Kind Regards,

ESME

 

Fakta om XMRV-viruset fra European Society for ME(ESME)

European Society for ME (ESME) har lagt ut en faktaside om XMRV-viruset. Mange interessante linker her. Det står bla at ME/CFS nå blir kaldt XAND (X Associated Neuro-Immune Disease). Kanskje vi endelig kan bli kvitt det tåpelige navnet Cronic Fatigue Syndrome?

Presentasjoner fra Stavangerkonferansen!

PowerPoint presentasjoner av De Meirleir og Saugstad fra konferansen i Stavanger, holdt i juni-2009.

http://www.me-forening.no/index.php?option=com_content&task=view&id=161&Itemid=98

10 ledende forskere vil finne sannheten om ME!!

STATEMENT FROM ESME – EUROPEAN SOCIETY FOR ME
More Biomedical Research Needed
 
ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) is a physical disease. It is not a product of the patients’ imagination and is not a psychological problem. Funds have been used for research into the hypothetical psychiatric nature of the disease at the expense of biomedical research. Future research needs to be interdisciplinary and focused on the causes, early diagnosis and treatment of ME/CFS.
 
The British National Health Service has published NICE guidelines for this disorder which, according to ESME, are not helpful and might even induce relapse in some cases.
 
ESME will encourage research leading to the accumulation of new knowledge and to a better understanding of the disease, and will endeavour to raise funding for biomedical research in, and education about, ME/CFS.
 
Stavanger, Norway, June 13, 2009
Launch Meeting ESME
 
PhD Dr. Liv Bode
Prof. Dr. Med. Kenny De Meirleir
Dr. Med. Derek Enlander
Dr. Med. Ana Garcia Quintana      
Prof. Dr. Hanns Ludwig
Prof. Dr. Med. Mária J. Molnár
Prof. Dr. Bodil Norrild    
Prof. Dr. Med. Ola Didrik Saugstad
Prof. Dr. Med. Babill Stray-Pedersen
Prof. Dr. Med. Umberto Tirelli
 
ESME website:  www.esme-eu.com

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Kjenner at jeg er skuffet..

Pressekonferansen til European Society for ME i forbindelse med konferansen i Stavanger ble avlyst! Hvorfor? Fordi det ikke kom noen pressefolk! Vi hadde vel begynt å innse at det ikke ble noen bred mediadekning av dette som for mange av oss var den beste nyheten på lenge, nemlig at 10 ledende forskere fra Europa hadde slått hodene sammen for å fokusere på kompetanseoverføring av ME til helsepersonell. Egentlig burde frafallet kanskje ikke komme som en overraskelse.. Det gjenspeiler og understreker vel egentlig bare holdningene vi møter så altfor ofte i helsevesenet, nærmiljøet, media og samfunnet forøvrig.

Når jeg sitter her og skriver dette, hører jeg på TV’n at man bør satse på rehabilitering av kreftsyke. De skal få en verdig sjanse til å bygge om fundamentet i livet sitt igjen og i tillegg er det samfunnsøkonomisk. Selvfølgelig – kjempe bra! Oppriktig talt – det skulle bare mangle i vår rike sosialistiske stat! Jeg ser frem til den dagen verdig behandling av vår pasientgruppe blir en like stor selvfølge i vårt sosialistiske land. I den grad at tom media vurderer nyheter innenfor feltet som informasjonsverdig.