Tag Archives: European Society for ME

ESMEs uttrykker bekymring for at ME kan bli klassifisert under “Complex Somatic Symptom Disorders”

Hentet fra ESMEs Facebookside:

“The board of ESME (European Society for Myalgic Encephalomyelitis) wishes to express its concern over the proposed category of Complex Somatic Symptom Disorder.

Myalgic Encephalomyelitis (ME), is a potentially severe and chronic multi-system illness, commonly triggered by a virus infection, of which a key symptom is post-exertional malaise. It has been classified as a neurological condition by the WHO since 1969 and carries the code G93.3. Since the 1980’s, ME has also been called Chronic Fatigue Syndrome and it is under this name, that ME has commonly been mistaken for a somatoform disorder. It is our experience that giving an ME patient a psychological diagnosis of somatoform disorder, or functional somatic syndrome, has severe consequences for the patient, as their biological illness is then ignored. This also leads to patients being treated with psycho-pharmaceuticals, exercise therapy and other inappropriate and potentially harmful treatments.

The parents of children with ME are often blamed for the child’s illness by doctors and psychiatrists who do not understand the biological basis of ME. We feel that the category of Complex Somatic Symptom Disorder would only increase this problem as it takes focus away from the child’s physical symptoms and places them on the reaction to the illness.  The diagnosis of Complex Somatic Symptom Disorder can be given if the parents of a young child express:

Excessive thoughts, feelings, and behaviors related to these somatic symptoms or associated health concerns: At least two of the following are required to meet this criterion:

(1) Disproportionate and persistent concerns about the medical seriousness of one’s symptoms.

(2) High level of health-related anxiety

(3) Excessive time and energy devoted to these symptoms or health concerns

If a doctor or psychiatrist does not understand the biological basis of a disease, it then becomes very difficult, if not impossible, to determine what amount of worry is disproportionate or excessive.

The board of ESME feels that the adoption of the umbrella term, Complex Somatic Symptom Disorders, would increase the risk of ME patients receiving a psychological misdiagnosis, therewith increasing the risk of neglect or direct physical harm to this patient group. We therefore strongly advise against the creation of the vague category, Complex Somatic Symptom Disorders.

Sincerely yours,

The Board of the European Society for ME



European Society for MEs referat fra Mikovits XMRV-seminar 28 november

Hentet fra esme-eu.com:

“Excerpts of the XMRV-conference in Oslo on 28/11/2010. Lecture by Dr. Judy Mikovits, Whittemore Peterson Institute and Lecturer of Dr. Mette Johnsgaard, Lillestrom Helseklinikk, Center for Treatment of Chronic Diseases”

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European Society for ME (ESME): Why XMRV-research is importent for us all

Hentet fra European Society for ME (ESME) nyhetsmail og publiseres med tillatelse fra ESME (link til referat fra seminaret er lagt til av meg):

Excerpts from ESME’s openings speech at the Oslo XMRV-seminar, (28/11/10) where Dr. Judy Mikovits (WPI) and Dr. Mette Johnsgaard (Lillestrom Helseklinikk, Center for Treatment of Chronic Diseases) gave the latest updates in research.

During the last 2 decades, nothing had really happened in the field of ME/CFS. There was not much serious research, no real search for cures, and the disease received no credibility whatsoever despite the immense suffering of patients and skyrocketing prevalence numbers. The future for ME/CFS patients looked bleak….

And then came October 2009 with the publication of the Science paper where Dr. Judy Mikovits and colleagues showed a correlation between a recently discovered retrovirus, XMRV, and ME/CFS. This study was a collaboration of 3 major American institutions: the National Cancer Institute, the Cleveland Clinic, and the Whittemore Peterson Institute. This was the first time that major institutions had collaborated on ME/CFS research.

This research was confirmed in August 2010 when another important study was published in the Proceedings of the National Academy of Sciences, PNAS. This study was done by the highly-respected Dr. Harvey Alter and colleagues from the National Institutes of Health in the US.

Since October 2009, the retroviral story has become a big international issue and a matter of great discussion in the scientific community. Conflicting results and conflicts of interest have emerged and several negative studies have been the subject of great controversy. The current XMRV-story is very similar to the early days of HIV/AIDS-research – a disease which also involves a retrovirus. After the discovery of HIV, there were many conflicting results and the field was messed up by bad science, politics and conflicts of interest. Many top scientists involved in HIV-research are clear regarding the new XMRV-story: “We have to make sure the HIV-story is not repeated.

That is why it is so important that the ME/CFS field has top-notch research that cannot be disputed. Until now, some of ME/CFS research has not been done in a reliable systematic way so the results have been inconsistent. The XMRV-story has shown us that in order for ME/CFS to be taken seriously, every step in the process needs to be reliable and professional – from the way the patient group is defined, to how samples are gathered and processed, to the way they are transported and tested. It is also very important that scientists and specialists work with top-quality, certified labs. Only when all of these things are in place will the results be accepted by respected scientific journals and the disbelievers will be shut down.

The research from Drs. Alter, Mikovits and colleagues is so important because they did all of these things right and they set the standard for quality research in the ME/CFS field.

Since the Science and PNAS publication we have for the first time:

  • Serious research by dedicated top-level scientists. As Louis Pasteur said back in the 19th century: “In the fields of observation, chance favors only the prepared mind.”
  • Scientists and experts willing to collaborate internationally and share information. The recent breakthroughs in Alzheimer’s disease show how collaborative efforts and sharing information can make the difference in researching complicated diseases. The Alzheimer’s researchers put their scientific egos and personal agendas aside and shared information. The result is biomarkers for Alzheimer’s and over 100 drugs being tested for treatment. This can happen in ME/CFS research too.
  • Scientists and experts from outside the ME/CFS field who are bringing fresh ideas to the research. In the past decades, researchers avoided ME/CFS as it was thought to be career-damaging, but the interest of new researchers shows that there is a change in the way ME/CFS is viewed.
  • The attention of governments, blood banks, medical organizations and multinational organizations like the WHO, CDC, NIH and FDA.
  • Extensive international media attention focused on ME/CFS research
  • Strong evidence that ME/CFS is not a psychosomatic disorder.

It is clear that Drs Alter, Mikovits and colleagues gave the patients and the field new HOPE!

So why do we need further research? Isn’t it obvious that the retrovirus is important in ME/CFS? Can’t we just jump from these few positive studies and focus all our energy and money on treatment? Unfortunately that’s not how it works. In the meetings ESME has had with government officials, people in the medical community, the scientific world and with drug company representatives, it is very clear to us that they will only invest money and change policy if more solid research studies are done. But once the correlation between XMRV and ME/CFS is undoubtedly proven, then they will, without doubt, get involved. Because then it will be 100% clear that this is an important health issue which can no longer be ignored.

In summary, it is important to support research in your country because solid research:

· Will convince your government to invest money in research and to change policy about testing and treatment. These are often very expensive and as a result too many patients are excluded

· Will help ME/CFS gain credibility in the medical environment and help get more doctors and specialists into the field.

· Will encourage pharmaceutical companies to sponsor much-needed clinical trials for drugs. Clinical trials are important in order to get a clear picture of exactly which testing/treatment works and which does not.

· Will help ME/CFS gain credibility in the international scientific community and attract more top scientists and reliable labs.

Remember, it is only when we have really good scientific papers printed in the top scientific journals, that the credibility of ME/CFS will continue to grow. And only then will our politicians, doctors and pharmaceutical companies get involved.

So in the meantime, what can the patient community do for ME/CFS research? They can help by volunteering time, by helping to find sponsors and by donating money to support serious top-notch research. And every donation helps. Barack Obama, the first black president of the US, received a lot of his campaign money from small donations made on the internet. He used these small donations to change American politics and we can use this same tactic to change ME/CFS politics – by supporting serious research. Most of the scientists that ESME has spoken with are really focused on helping the patients and not on their egos, so every Euro donated to research will help all of you.

ESME - the European Society for ME – offers prominent scientists in the field a professional framework to enhance scientific research. At this moment ESME is discretely working on a few international collaborative research projects with some of the world’s leading experts. We are also organizing a few discrete round table meetings where these top minds – including European and American specialists – can brainstorm. The focus of these projects is prevalence, causes, missing links and treatment.

For donations to help ME/CFS research in Europe, please go to: http://esme-eu.com/home/donate-article427-6.html

The European Society for ME is a non-profit group, operated entirely by volunteers.”

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.



Prof. Dr. Luc Montagnier(Nobelpris for oppdagelse av HIV) æresmedlem i European Society for ME

Hentet fra esme-eu.com:

“Prof. Montagnier is a Professor Emeritus of Virology at the Pasteur Institute in Paris, France, where he was the director of the Viral Oncology Unit from 1972 to 2000. He is the co-discoverer of the HIV1 virus and HIV test. He received the Nobel Prize for Medicine in 2008 for discovering viruses that cause severe human diseases.A second similar HIV virus (HIV2, West-African Aids virus) was discovered by Prof Montagnier and colleagues in April 1986.”

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DVD fra ME-konferansen i Danmark 28.05 i salg nå

Hentet fra European society for ME:

“Two ME experts and a nutritionist will share their experiences with ME/CFS patients. They are: Dr. Mette Johnsgaard from Lillestrøm Health Clinic in Norway, Dr. Ritchie Shoemaker from Chronic Neurotoxins in Maryland, USA, and nutrition expert Christine Tobback from Himmunitas, Belgium.”

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European Society for ME etterlyser blodgiverforbud for ME-syke i Europa

Hentet fra esme-eu.com:

“On June 18th, 2010, the  AABB Interorganizational Task Force on Xenotropic Murine Leukemia Virus-Related Virus released a bulletin recommending that ME/CFS patients should be actively discouraged from donating blood or blood components until further definitive data are available.  By doing this, America joins Canada, New Zealand and Autralia in recomending that ME/CFS patients refrain for donating blood products.”

“We, the Think Tank panel of ESME, applaud the actions of the task force and again call for a similar ban to be issued in all European countries. Until the connection between XMRV and ME/CFS is fully understood, it is strongly advisable to prohibit donations of blood and blood components from these patients and irresponsible to act otherwise.”

“We encourage you to contact your government officials and ask them to ban ME/CFS patients from donating blood.”

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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.”

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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.”

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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)


  • 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)


  • 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

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