Over ME

Januari 2007: Eindelijk een doorbraak in de behandeling?
Kort samengevat: Amerikaanse onderzoekers boeken succes bij de behandeling van ME-patiënten met een antiviraal middel. Dit middel werd eerder gebruikt bij de behandeling van mensen met chronische Herpes-infecties.

New Therapy for Chronic Fatigue Syndrome to Be Tested at Stanford

bron: Business Wire
datum: 8 januari 2007

STANFORD, Calif.--(BUSINESS WIRE)--A preliminary study suggests there may be hope in the offing for some sufferers of chronic fatigue syndrome with a new therapy being tested by researchers at the Stanford University School of Medicine.

José Montoya, MD, associate professor of medicine (infectious diseases), and postdoctoral scholar Andreas Kogelnik, MD, PhD, have used the drug valganciclovir — an antiviral often used in treating diseases caused by human herpes viruses — to treat a small number of CFS patients.

The researchers said they treated 25 patients during the last three years, 21 of whom responded with significant improvement that was sustained even after going off the medication at the end of the treatment regimen, which usually lasts six months. The first patient has now been off the drug for almost three years and has had no relapses. A paper describing the first dozen patients Montoya and Kogelnik treated with the drug was published in
the December issue of Journal of Clinical Virology.

“This study is small and preliminary, but potentially very important,” said Anthony Komaroff, MD, professor of medicine at Harvard Medical School, who was not involved in the study. “If a randomized trial confirmed the value of this therapy for patients like the ones studied here, it would be an important landmark in the treatment of this illness.”

Montoya has received a $1.3 million grant from Roche Pharmaceutical, which manufactures the drug under the brand name Valcyte, to conduct a randomized, placebo-controlled, double-blind study set to begin this quarter at Stanford. The study will assess the effectiveness of the drug in treating a subset of CFS patients.

Montoya is speaking about his efforts at the biannual meeting of the International Association for Chronic Fatigue Syndrome in Fort Lauderdale on Jan. 11 and 12.

Chronic fatigue syndrome has baffled doctors and researchers for decades, because aside from debilitating fatigue, it lacks consistent symptoms. Although many genetic, infectious, psychiatric and environmental factors have been proposed as possible causes, none has been nailed down. It was often derided as “yuppie flu,” since it seemed to occur frequently in young
professionals, though the Centers for Disease Control and Prevention says it’s most common in the middle-aged. But to those suffering from it, CFS is all too real and its effects are devastating, reducing once-vigorous individuals to the ranks of the bedridden, with an all-encompassing, painful and sleep-depriving fatigue.

More than 1 million Americans suffer from the disorder, according to the CDC. The disease often begins with what appears to be routine flulike symptoms, but then fails to subside completely — resulting in chronic, waxing and waning debilitation for years.

Valganciclovir is normally used against diseases caused by viruses in the herpes family, including cytomegalovirus, Epstein-Barr virus and human herpes virus-6. These diseases usually affect patients whose immune systems are severely weakened, such as transplant and cancer patients. Montoya, who had used the drug in treating such patients for years, decided to try using it on a CFS patient who came to him in early 2004 with extremely high levels
of antibodies for three of the herpes family viruses in her blood. At the time, she had been suffering from CFS for five years.

When a virus infects someone, the levels of antibodies cranked out by the immune system in response typically increase until the virus is overcome, then slowly diminish over time. But Montoya’s patient had persistently high antibodies for the three viruses. In addition, the lymph nodes in her neck were significantly enlarged, some up to eight times their normal size, suggesting her immune system was fighting some kind of infection, even though a comprehensive evaluation had failed to point to any infectious

Concerned about the unusual elevations in antibody levels as well as the swelling of her lymph nodes, Montoya decided to prescribe valganciclovir. “I thought by giving an antiviral that was effective against herpes viruses for a relatively long period of time, perhaps we could impact somehow the inflammation that she had in her lymph nodes,” said Montoya.

Within four weeks, the patient’s lymph nodes began shrinking. Six weeks later she phoned Montoya from her home in South America, describing how she was now exercising, bicycling and going back to work at the company she ran before her illness. “We were really shocked by this,” recalled Montoya.

Of the two dozen patients Montoya and Kogelnik have since treated, the 20 that responded all had developed CFS after an initial flulike illness, while the non-responders had suffered no initial flu.

Some of the patients take the drug for more than six months, such as Michael Manson, whose battle with CFS has lasted more than 18 years. The former triathlete was stricken with a viral infection a year after his marriage. After trying unsuccessfully to overcome what he thought were lingering effects of the flu, he had no choice but to drastically curtail all his activities and eventually stop working.

During his longest period of extreme fatigue, 13½ weeks, Manson said, “My wife literally thought I was passing away. I could hear the emotion in her voice as she tried to wake me, but I couldn’t wake up to console her. That was just maddening.”

Now in his seventh month of treatment, Manson is able to go backpacking with his children with no ill after-effects. Prior to starting the treatment, Manson’s three children, ages 9 to 14, had never seen him healthy.

Montoya and Kogelnik emphasized that even if their new clinical trial validates the use of valganciclovir in treating some CFS patients, the drug may not be effective in all cases. In fact, the trial will assess the effectiveness of the medication among a specific subset of CFS patients; namely, those who have viral-induced dysfunction of the central nervous

“This could be a solution for a subset of patients, but that subset could be quite large,” said Kristin Loomis, executive director of the HHV-6 Foundation, which has helped fund a significant portion of the preparatory work for the clinical trial. “These viruses have been suspected in CFS for decades, but researchers couldn’t prove it because they are so difficult to detect in the blood. If Montoya’s results are confirmed, he will have made a real breakthrough.”

“What is desperately needed is the completion of the randomized, double-blind, placebo-controlled clinical trial that we are about to embark on,” Montoya said. People interested in participating in the clinical trial must live in the San Francisco Bay Area. More information about the clinical trial is available online at http://www.vicd.info/clinicaltrial.html.

Stanford University Medical Center integrates research, medical education and patient care at its three institutions — Stanford University School of Medicine, Stanford Hospital & Clinics and Lucile Packard Children’s Hospital at Stanford. For more information, please visit the Web site of the medical
center’s Office of Communication & Public Affairs at


Het grootste misverstand over ME is dat ME hetzelfde is als vermoeidheid. Alle behandelingen in Nederland zijn gericht op vermoeidheid. Met behulp van psychotherapie en bewegingstherapie moet de patient leren anders te denken, voelen en bewegen. Patienten die niet opknappen, wordt verweten dat zij niet beter willen worden. Toch het zijn niet de patienten die hier foutieve aannamen hebben, maar de deskundigen die denken dat ME niets anders is dan chronische vermoeidheid.
Anders gezegd: wie opknapt van psychotherapie en beweging heeft nooit ME gehad!!!
Iedere ME-patient merkt, dat hoe zorgvuldig je ook traint, je lichaam niet in staat is om conditie op te bouwen. Integendeel: de meesten merken dat meer beweging en activiteit gepaard gaat met meer pijn, uitputting en algeheel ziektegevoel. De opvatting dat ME-patienten kunnen genezen van gedragstherapie is even onzinnig als beweren dat iemand op deze wijze kan genezen van Parkinson of Aids.

Wat is ME?
De naam ME werd in 1956 in het medisch vakblad The Lancet gebruikt om een ziektebeeld te beschrijven, dat in die tijd in veel landen zowel individueel als in epidemische uitbraken voorkwam. Onder mannen evenzeer als onder vrouwen! Later hebben Amerikaanse onderzoekers ervoor gekozen om de term ME (myalgische encephalomyelitis) te vervangen door de algemenere term CFS (chronic fatigue syndrome). Helaas heeft dit vooral in Nederland geleid tot het zeer onzorgvuldig op één hoop gooien van alle vormen van vermoeidheid. De termen ME, CVS en CV (chronische vermoeidheid) worden in ons land door elkaar gebruikt alsof het in alle gevallen om dezelfde problematiek gaat. Maar niets is minder waar. Het oorspronkelijke begrip ME betreft een ziekte met griepachtige symptomen, waarvan vermoeidheid niet meer dan één symtoom is. Gezien het feit dat ME (over de hele wereld) ook in epidemische uitbraken voorkwam,  kan het niet anders zijn dan dat in beginsel sprake is van een virusinfectie of een bacteriële infectie. Net zoals mensen die als kind de waterpokken hadden, op latere leeftijd door dat zelfde virus gordelroos kunnen ontwikkelen, is het heel goed mogelijk dat bijvoorbeeld het Epstein Barr virus dat de vrij onschuldige ziekte van Pfeiffer veroorzaakt, onder bepaalde omstandigheden (stress en genetische aanleg) ME kan veroorzaken. Mensen met ME zijn vooral ZIEK en niet vermoeid.

Criteria voor de diagnose van ME:
De meest gebruikte criteria, de CDC-criteria, zijn bedoeld voor de selectie van proefpersonen voor wetenschappelijk onderzoek en niet voor de diagnostiek in de spreekkamer!!! Er is veel discussie over deze en andere criteria voor ME resp. CVS. Gaat het wel om ME of veel meer om langdurige vermoeidheid? Bij alle criteria-clusters staat vermoeidheid bovenaan, maar dat is m.i. een te algemene formulering. Wat ME het meest kenmerkt, is abnormale spiervermoeidheid, spierzwakte en spierpijn na geringe normale inspanning en een traag en onvolledig herstel na rust. De malaise bij ME is zonder enige twijfel gerelateerd aan fysieke en mentale inspanning. Elke vorm van activiteit -hoe gering ook- die de individuele marge van de patiënt overschrijdt, versterkt de malaise.

Ik deel het standpunt op de website van de Engelse ME-Stichting:

'The clinical features of ME were first clearly described by the late Dr Melvin Ramsay (a physician at the Royal Free Hospital in London during the 1955 outbreak, and The ME Association's first President). Since then, in the light of there being no diagnostic test, there have been several more attempts to define the illness by way of its symptoms although never with all-round agreement.

In recent years there have been the American Center for Disease Control (CDC) definition and the 'Oxford Criteria', and although these tend to be used as a diagnostic aid by many clinicians, they were compiled primarily for researchers to identify particular sets of people for their studies.

These later definitions (of "CFS" as opposed to "ME") give various physical and neurological symptoms; however, in these definitions, the cardinal features of "ME" - the muscle fatigueability and pain, and post-exertional malaise - do not have to be present for such a diagnosis. This suggests that nowadays, not everyone with a diagnosis of "Chronic Fatigue Syndrome" necessarily has the disease "ME" as described by Dr Ramsay. It also seems that CFS can cover a spectrum of fatigue-prominent diseases, possibly including illness based in depression, stress or 'burn-out'.

Two other features of ME are first the fluctuation of symptoms from day to day, or within the day; and secondly the tendency for the condition to persist for several years.'

Meer informatie over ME:
kijk op www.steungroep.nl  en op www.me-cvsvereniging.nl

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