The following is a summary of lectures presented by Dr. Judy Mikovits and Dr. Mette Johnsgaard at the European Society for ME (ESME) conference on XMRV in Oslo, Norway, on November 28th, 2010.
ESME works to further our understanding of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), in part by providing forums such as conferences where biomedical researchers in the field can present their findings.
Lecture summaries as provided by ESME:
Lecture by Dr. Judy Mikovits, Whittemore Peterson Institute
Dr. Mikovits began by acknowledging several other famous researchers and telling about her collaborations with them, including several researchers at the National Cancer Institute, the Cleveland Clinic, the SAIC and, of course, the Whittemore Peterson Institute.
Dr. Mikovits proceeded by explaining how the novel retrovirus was found in prostate cancer patients in 2006 and 2007, and named XMRV Xenotropic Murine Leukemia virus-Related Virus. She showed how the infectious clone was constructed and sequenced and found to be a novel human gammaretrovirus. Dr. Mikovits then showed how ME/CFS patients have several inflammatory sequelae including antiviral enzyme dysfunction (RNase L), decreased NK cell number and function, increase in activated T cells and increases in inflammatory cytokines/chemokines. She believes that these dysfunctions might be explained by an ongoing retroviral infection and proposed that these patients could be infected with XMRV.
Dr. Mikovits went through some of the technical information on how they were able to detect XMRV proteins and positive antibodies leading up to the October 9th , 2009 Science article. She also gave the audience a little insight into newer detection techniques that are currently being developed.
Dr. Mikovits showed possible reasons for the disparity in XMRV detection, including patient selection in heterogeneous diseases, variation in methods, possibility of scattered world-wide distribution (as in HTLV1), higher levels of sequence diversity, looking for retrovirus in blood, prostate cancer not being the in vivo reservoirs, and false positives due to PCR contamination with mouse cells.
She showed that infectious XMRV and antibodies were found in samples from UK ME/CFS patients and in Norwegian patients. The Norwegian study is ongoing and Dr. Mikovits is cooperating on it with Dr. Johnsgaard of the Lillestrøm Clinic. She then went on to explain the finding of 2 strains, XMRV and PMRV, and the probability that both can be present at the same time in the same patient.
Dr. Mikovits showed a slide that made it obvious that the virus has a simpler make-up than HIV and HTLV1. Interestingly, the LTR is stimulated by hormones, proving why the LNCaP cell line is the best choice. It might also be a possible clue to pathogenesis as hormones and inflammation might increase the replication of XMRV.
HTLV1, a complex deltaretrovirus is not present in Europe or the US, but does exist in many individuals in other countries and carries a 10% lifetime risk of developing cancer and inflammatory syndromes. XMRV is probably more similar to HTLV than to HIV. HTLV is asymptomatic in the majority of individuals.
Dr. Mikovits ended her talk by showing some cytokine/chemokine profiles found in adult T cell lymphoma/leukemia and comparing them to many of the same findings in patients with XMRV.
ESME in cooperation with Dr. Mette Johnsgaard – Medical Reporter of the ESME Think Tank
Lecture by Dr. Mette Johnsgaard, Lillestrom Helseklinikk, Center for Treatment of Chronic Diseases
Dr Mette Sophie Johnsgaard opened her speech by introducing Lillestrøm Helseklinikk, Center for Treatment of Chronic Diseases, where she is medical director. They see approximately 600 patients per month, most Norwegian patients, but also some Danish and Swedish patients visit the clinic, and lately patients have been contacting them also from the Continent. Today 3 physicians work at Lillestrøm, mainly with ME/CFS patients.
Dr Johnsgaard showed the audience the impressive list of her support group. Together with the two other physicians at the clinic, she has traveled extensively the last year, visiting several well known ME/CFS experts in order to learn as much as possible on diagnosis and treatment in patients with ME/CFS. This has enabled the doctors to find the best possible treatment plan for every individual patient.
She continued talking about the patient group in focus, especially what triggers disease and the amount of reactivating viruses and chronic infections, as this is information that can be important for treatment and also give a better understanding of the disease. She also mentioned gastrointestinal disorders including inflammation, bacterial overgrowth, parasite, inflammation and food intolerances. Both the chronic and reactivating infections and the bowel inflammation and persistent parasite inflammations are common in other retroviral disorders, making the XMRV story plausible.
Dr Johnsgaard honestly explained how a normal Norwegian GP has very little knowledge on retroviruses; neither HTLV nor HIV is often seen in a GPs office. This makes the connection between retrovirus and ME/CFS difficult to see, even after the positive studies showed possible connection to the disease. She told the audience how she was reluctant to send samples testing for XMRV virus until more was known on the matter, however, as patients constantly kept putting pressure on the clinic, they finally decided to send samples to VIPdx, a CLIA certified laboratory. The positive samples came as a big surprise to both doctors and some patients, and the need for Norwegian research seemed obvious.
She continued explaining how many samples where positive in cell culture and/or serology, and showed connections between Karnofsky score and positive samples. The material is of yet not published.
Dr Johnsgaard showed us a couple of patient examples. 2 co-workers got sick about the same time with a hard influenza-like disease. One developed a chronic neurological pain disorder but no exhaustion, the other a classical ME/CFS. They are both XMRV positive. A patient develops ME/CFS after an accident, but had bouts of chronic sinusitis and tendinitis years before the accident. The house proved to have molds and she could pin point many symptoms having started as she moved into the house. After renovating the house, she has experienced a great improvement on biotoxin therapy as used by Dr Ritchie Shoemaker, with whom Dr Johnsgaard is in close contact with. The patient does however also have positive XMRV.
Here is the conclusion to the Dr. Johnsgaard’s experience at Lillestrøm helseklinikk so far:
- Many different triggers give the same disease
- Chronic infections and reactivated viruses are common and need treatment
- Many patients have gastrointestinal disorders that can be treated
- Many patients have biotoxin disease that can be treated
- Clusters of ME/CFS are seen in families and areas
- Partners do and do not get sick
- There is an overweight of cancer and autoimmune diseases in the family of patients with ME/CFS
- Varying effect on treatment protocols makes it important to have individual, tight follow up
Many patients get better after treatment up to a certain point, pointing to the possibility of treating secondary effects in a retroviral infection.
What can be treated to day:
- Chronic / reactivated infections
- Gut inflammation
- Biotoxin disease
- Immune pathologies, to a certain degree
It is too soon to try anti-retroviral treatment. More research is needed.
Dr Johnsgaard continued her speech talking about the ongoing research: “NO-CFS, stage 1, confirmatory study for the detection of gamma retrovirus related sequences”. The research is being conducted in cooperation with the WPI, USA and the San Raffaele Scientific Institute in Milan, Italy. She also mentioned several planned research projects planned for 2011, including research in biotoxin disease in cooperation with Dr. Ritchie Shoemaker and bigger international studies for human gammaretrovirus.
Dr Johnsgaard’s speech was constantly pointed back to the patients, and at this point she talked about two patients she has been treating. The first was a young girl who was extremely sick without any offered treatment nor explanation for her ME/CFS symptoms. After one year of treatment she is back to normal life. The other, a young boy has been bedridden for years, mysteriously extremely ill. He is so sick that he cannot interact with even his parents without it being a great strain for him. He has told his mother he plays in the garden with his friends inside his head. That is all he can manage. No treatment has had any effect so far, and Dr Johnsgaard pointed out that the extremely ill patients are one of the major reasons she feels research is so important. He is also one of the reasons why it is so important to ban blood donations from ME/CFS patients. If there is the slightest chance that a transmissible agent can lead to such a debilitating disease, one should stop any possible route of transmission.
As a summary Dr Johnsgaard showed off the following slide:
- ME is a serious disease. It reduces life function more than most other diseases seen in a GPs office. It is also a great burden on society.
- We know through research that ME/CFS patients have reactivated viruses and chronic bacterial infections
- We know through research that ME/CFS patients have immune pathologies
- We know XMRV is a novel human gamma retrovirus
- We know HTLV is associated with cancer and inflammatory diseases
- We know HIV is associated with severe immune deficiencies
- We believe XMRV is related to certain types of cancer
- We believe XMRV is related to a chronic immune inflammation
- We believe XMRV is only one of several gamma retroviruses that will be isolated over the next years, opening up for the possibility for explaining different degrees of severity in patients with ME/CFS
- We need more research, and for research we need funding
- We need cooperation between researchers
- Relevant research has to benefit patients without delay
- We need an updated patient information channel
Lillestrøm helseklinikk will continue to treat what is possible, and to follow up research.
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