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Nytt referat fra Invest In ME hentet fra ESMEs Facebookside

European Society for ME har lagt ut en rapport fra konferansen på Facebook, skrevet av en tilstedeværende. Jeg vet det er mange som leser bloggen som ikke er på Facebook derfor legger jeg det ut i sin helhet her også:

«Exactly at nine o’clock, Annette Whittemore gave the first speech. I like this woman and I pray to God she will lead the WPI for many, many years. Dr. David Bell was the following speaker. I would like to emphasize the following ideas: Initial severity marks the rest of the illness / Children with CFS don’t recover, though sometimes in their twenties they may feel or do a bit better, but they will remain ill for all their lives / “I’m doing well”: people with CFS have a false perception of health and tend to say they are doing well in comparison with when they were terribly ill, but that does not mean that they are doing well in comparison with healthy people / Some people talk of recovery when they should talk of adaptation.

Dr. Andreas Kogelnik, a young MD, one of those guys who believes he has an answer to everything and has the world in his hands. He told us that some years ago he had been working with Dr. Montoya but is now the Founding Director of the Open Medicine Institute. He believes that with translational informatics and high technology, he will advance in the detection and implementation of clinical trials for CFS patients across a network of sites. He has his faith in the OMI Network. I send him my best wishes.

Then it was Dr. John Chia’s turn. (Richard and Pia, please bring the Chia’s back every year). What he said is so interesting and has so much sense that it’s always a pleasure to hear him. His son, Andrew Chia, has CFS, but he is doing fairly well. He is sure we have an enterovirus infection in the gut, he talked about treatments, basically immune boosters (herbal immune boosters or interferon) and warns us about steroid intake because he said it boosts the infection. He said Oxymatrine works in 50% of his patients but has side effects and about “equilibranthealth” he said that if in six months it doesn’t work, you had better forget about it.

Professor Geoffrey Burnstock’s lecture, which was very technical, was about autonomic neuroscience. He has never worked on CFS patients but said that all that he was learning about this illness agreed with what he had discovered on P2 purigenic receptors. Dr. James Baraniuk spoke next. He is conducting a CFS and a GWI research study, doing lumbar punctures where they measure the spinal fluid pressure during the procedure and search for specific proteins that may help understand these two similar conditions. As a treatment, he is trying Carnosine as an antioxidant that could relieve symptoms.

I was late to the next lecture, and I think it was Professor Simon Carding who was talking about the immune response in gut functions. As Dr. Chia does, he said he was studying intestinal flora, Simbionts, Bacteroides and Firmicutes. As treatments he talked about sour milk, probiotics and bifidus. Dr. Chia and his son took notes during this lecture.

Dr. Oystein Fluge and Professor Olav Mella were next with their hypothesis that at least a subset of CFS patients have an activated immune system as an autoimmune illness, and these people could benefit from a B-cell depletion therapy using Rituximab.

Then, it was Dr. Kenny de Meirleir’s lecture. We were all expecting him to talk about his novel XMRV gut test. Surprisingly, he didn’t say a word about this and his well built lecture was based on different markers CFS patients have: low uric acid, increased copper/ceruloplasmin, elevated Gamma GT, and Alcaline Phospatases can be very low, etc. Then he talked about therapies that work for some as antibiotherapy, Probiotics, Prebiotics, and Enzymes, etc and warn us about oral NSAID. It was very interesting, indeed.

At last it was the turn of Dr. Judy Mikovits. We were all surprised by the strength and passion with which Dr. Mikovits presented her lecture. It was about Clinical implications of XMRV and MLV-Related (MRV) Human Gamma Retrovirus infection. We could see in her slides that her lab has identified several footprints of HGRV infection. She said that XMRV infection may accelerate the development of B cell malignancies, and since viral load in peripheral blood is low, she believes that B cells in tissue such as spleen and lymph nodes could be an in vivo reservoir for XMRV. She also told us that they have identified an inflammatory cytokine and chemokine signature in positive XMRV CFS patients. Then she told us that a subset of these patients have responded favourably to treatment with the immune modulator GcMAF, others to antiretroviral therapy, others to Ampligen and others to Stem Cells.  I understood that she said that Hormones and Inflammatory cells increases XMRV, that oxidative stress, glutathione depletion and DNA hypomethylation all increase viral replication, that we should never take steroids and that if women want to breastfeed their children, they must do it only up to the sixth week. Watching her while she was talking, all of a sudden, I felt how alone she must feel with everybody trying to prove she is wrong and immediately after rush to patent their proper test, or give a new name to her retrovirus. Money and other researcher’s ego can ruin Dr. Mikovit’s work, and patients could have to wait twenty long years more before science admits that Eleine de Freitas and Judy Mikovits were right. For some seconds I had to struggle not to let my tears fall. In one of the breaks I managed to get near her and I heard her say “Please, do not be discouraged about the negative papers. The positive papers will eventually come out.”

The big surprise of this Conference was the three minute lecture of Dr. Wilfried Bieger. He said he had presented a negative paper about XMRV, that Dr. Judy Mikovits had offered to show him how to find XMRV, that following her advice they had found XMRV in German patients and that now they were working on a most efficient new test. And as this positive data had not been published, he would say no more. Time will give us the clue if he is a serious researcher or another charlatan.

The big elephant in the room: Dr. Daniel Peterson, attended the conference, though he was not invited to give a lecture. He did not sit in the first row in the Conference room, and I never saw him talking to Annette Whittemore, Dr. Judy Mikovits nor with Dr. Kenny de Meirleir, with whom he had been a very close friend a year ago. He was only interested in talking to Dr. Andreas Kogelnik. Some people tried to talk to him, but he was not in a good mood. One of the patients told me Peterson was behind a new XMRV negative paper that is expected to come out in two or three weeks. Another one told me that this paper would be signed my Dr. Levy. If all this is true, friends, we must take it easy. Better think it could be the last negative paper. Other people were saying that before this year comes to an end, everything could change dramatically and some positive papers could pop up and XMRV validation finally accepted. »

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Les det på norsk med Google Translater HER 

9 responses to “Nytt referat fra Invest In ME hentet fra ESMEs Facebookside

  1. Perle 25.05.11, kl. 11:25

    Dette som står om at bør unngå NSAIDS oralt, noen som vet noe mer om det?? Jeg bruker nemlig å stappe i meg ibuprofen /voltaren som smertelindrende. Kanskje ikke så smart det da??

    • Perle 25.05.11, kl. 23:58

      Var litt kjapp her tidligere, det jeg lurer på er:
      -Har noen av dere som går til behandling hos KDM hørt noe om dette tidligere?
      -Vet dere i såfall hvorfor han fraråder dette?

      Og takk til Rutt for at hun nok en gang legger ut oppdatert info:)

      • Rutt 26.05.11, kl. 12:14

        Disse medikamentene inneholder noe som heter salisylsyre og dette er sterkt etsende. Det kan gi magesår og når man har en inflammert tarm/lekk tarm (noe veldig mange ME-pasienter) har, er ikke dette lurt å fylle på med. KDM anbefaler også at man bruker minimalt med paracetamol. Det finnes smertestillende som ikke er så belastende på mage/tarm, men dette bør du evnt snakke med lege om..

  2. TaS 25.05.11, kl. 14:19

    Det med Dr. Peterson hørtes merkelig ut. Hva skjer? Det kan jo være flere muligheter her.

  3. Måne 25.05.11, kl. 14:27

    Takktakk, Ruth, for at du la det ut her :-). Jeg er en av dem som ikke er på Facebook..
    Og etter å ha lest raskt igjennom, kan jeg tilslutte meg denne oppsummeringen. Dog uten at jeg var klar over dette siste ang. Dr Daniel Peterson. Dette er jo trist, da.. Og jeg kjenner at jeg er vedlig glad for at Mikovits og Meirleir tydlelig er på bølgelengde 🙂 Samarbeid mellom forskj.forskere (og klinikere) er det som til slutt vil føre oss mot adekvat og kurativ behandling. Det er mitt høyeste ønske at forskere verden over setter pasientene i fokus og velger riktig side i kampens hete!

  4. enur 25.05.11, kl. 18:23

    Rart at de omtaler Dr Peterson på denne måten. Et referat fra en konferanse bør jo være mest mulig objektivt med tanke personkarakteristikk.

  5. Cristina 25.05.11, kl. 21:32

    This post was written by Mike Turris and posted in his Facebook Wall, on Tuesday at 18.55.

  6. Måne 25.05.11, kl. 22:50

    «This post was written by Mike Turris and posted in his Facebook Wall, on Tuesday at 18.55.»

    -Da er det vel ikke en offisiell rapport fra ESME, men en personlig ytring.. Jmf enurs kommentar, (som jeg forøvrig er enig i ) «Et referat fra en konferanse bør jo være mest mulig objektivt med tanke personkarakteristikk.»
    Ellers er det flott at vi kan ha kontakt og informere hverandre over landegrensene! -Slik ruller ballen fortere og fortere 🙂

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