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Lessons from ME/CFS: Finding Meaning in the Suffering
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Invest in ME conference (2010) DVD

Discussion in 'General ME/CFS News' started by Bob, Jul 24, 2010.

  1. Bob


    England, UK
    Invest in ME conference 2010 - A Review of the DVD

    The Invest in ME 2010 conference DVD has now been produced and is available to purchase from the Invest in ME website:
    http://www.investinme.org/IiME International ME Conference 2010 - DVD Order.htm

    There are 4 DVD's which include 8 research presentations, a 2-hour round-table discussion (2 hours, 8 minutes), and a number of questions and answers sessions.
    (So, if you have ME, please don't attempt to watch it all in one sitting!)

    I recommend watching the DVD and so I've given a link (above) to the Invest in ME webpage, for ordering the DVD.

    Here is some feedback after my first viewing of the DVD...

    A very interesting conference

    I found the conference DVD exceptionally interesting and a helpful over-view of the current state of biomedical research for ME/CFS.

    It was great to be able to put the faces to the names of the top ME/CFS scientists, clinicians and researchers who I read about so often, and to see them presenting their own work with their own words, in person, rather than just reading published papers and third party reports.

    For me, as an avid follower of the ME/CFS research news, it was worthwhile watching the DVD to get an understanding about the individual researchers that I'm not always able to by reading the individual papers. There were some subjects which were completely new to me, such as Prof Huber's work on HERVs. And some speakers made presentations about subjects I am familiar with in an inspirational way which re-ignited my interest in the subjects, such as Prof Leonard Jason's presentation about diagnostic criteria and diagnostic tools.

    For anyone looking for an overview of the current biomedical research, then this DVD would be a very useful resource which gives an invaluable insight into the biomedical nature of ME/CFS, with evidence presented by the top biomedical researchers in the field.

    Overall, the conference had a very friendly, positive and constructive feel to it. I was left with the impression that all the speakers very much enjoyed Invest in ME's hospitality, the conference atmosphere and each other's company. The speakers appreciated being able to exchange ideas with each other. It was also heartening to see the speakers discuss areas of possible future collaboration, such as future diagnostic guidelines, and to talk about projects which they have in common, such as between Nancy Klimas and Jonathan Kerr.

    I felt very supported when watching these researchers who seem like amazing trail-blazing warriors who dedicate their lives to helping everyone who has this illness.

    Here are some bits of the conference that caught my interest...

    'Pre-Conference Round Table Meeting'

    The DVD includes a very interesting 'Pre-Conference Round Table Meeting' (an informal discussion) between Malcolm Hooper (chair), Nancy Klimas, Leonard Jason, John Chia, Paul Cheney, Judy Mikovits, Annette Whittemore and Brigitte Huber.

    This was a fascinating, dynamic and exciting exchange of ideas, and there seemed to be a consensus about the way that research should be going forwards.

    I especially enjoyed this pre-conference discussion. In my opinion this was an inspired addition to the conference.

    One subject of discussion, which I found particularly helpful, was the researchers' observations of their patients' symptoms and 'function', the nature of the progression of the illness, and how symptoms can change over time. There seemed to be a consensus on how symptoms and 'function' are typically inversely related (i.e. one goes up and the other comes down) and how symptoms can change over time in an individual (i.e. how a sore throat can be prevalent early on in the illness, but as time goes by and patients learn to manage their symptoms, then a symptom such as a sore throat can become less prevalent). My own experiences with the progression of my symptoms, over time, mirror exactly what they discuss, so I found this very helpful, validating and reassuring. They discussed the need for a patient's symptoms need to be evaluated over time, with these long-term changes taken into account, in order for an accurate diagnosis, rather than for a snapshot picture of the symptoms.

    An interesting observation, by more than one speaker in the discussion (I think this specific interaction was between Cheney, Mikovits and Whittemore, but I can't quite remember), was that, since the Science paper on XMRV was published, there had been a noticeable increase in the number of male teenagers turning up at surgeries, asking about XMRV and ME/CFS, and asking for help. Someone mentioned that they thought that maybe these teenagers had been labelled as psychiatric patients and given psychiatric diagnoses and psychiatric medications, up until the point where they heard about XMRV and turned for help to a clinician specialising in ME. My interpretation of the discussion was that maybe the families, of these teenage males, were not satisfied with these psychiatric diagnoses, and so were now looking at the XMRV research as potentially a better explanation of their child's illness.

    There was an interesting discussion between Prof Brigitte Huber and Dr Judy Mikovits on XMRV research, after Huber stated her opinion that there should be 'caution' regarding XMRV. (More about this, below).

    The round-table discussion is about two hours in length, and so various interesting subjects are discussed at length. I have just highlighted a few bits which have stuck in my mind.

    I have combined what the speakers said in their speeches, with what they said in the round-table discussions, without indicating which is which.

    Dr Paul Cheney
    Dr Cheney said that about 80% (81%?) of his patients are testing positive for XMRV - but I noticed that this is not with the most sensitive test - He stated that it is not with the WPI's antibody test - so this leads me to believe that his patients would be testing positive at something similar to the WPI's samples (97%) when he uses the WPI's new standardised antibody test.

    In his presentation, Dr Cheney mainly talked about heart dysfunction and oxygen 'toxicity' which he states is a problem for his ME patients. He talks about how this oxygen 'toxicity' causes the body to protect itself by minimising the impact of damage by this 'toxicity' by altering its function, which leads to some (or all?) of our symptoms. (I didn't find this presentation as interesting as some of the others, so I didn't pay too much attention - a second viewing may be necessary to do it justice).

    Dr Judy Mikovits
    Judy Mikovits outlined the XMRV research which she has already published and gave a brief mention of some of her ongoing work saying that she is involved in studying families with CFS and Autism, looking at the links between family members.
    Judy Mikovits restated that the samples for her study were international, not just USA samples, and reiterated why her XMRV testing could not possibly be due to contamination.
    Otherwise, I didn't pick up any new info in Dr Mikovit's speech... she was mainly covering her previous year's work since the last Invest in ME conference, in 2009.

    Dr Jonathan Kerr
    It was great to see our friend Jonathan Kerr again, as I haven't heard anything about his work since his involvement in the XMRV study.
    I was glad to see Dr Kerr continuing, and presenting, the genetic work which he does so well.
    He gave a fairly short talk about his ongoing genetic research with SNPs (pronounced 'snips').
    He then explained that SNPs are segments of our DNA which hold information about our genetic heredity (for example, if we have European or Asian descendancy). He is applying this research to the 88 genes which he previously found dysregulated in people with ME/CFS. I am not quite clear what he ultimately hopes to achieve from this research, but I think he might still be looking for practical genetic bio-markers for people with CFS/ME.

    Prof Nancy Klimas
    Nancy Klimas concentrated on bio-markers, and her work looking at dysregulation of cytokines in people with ME/CFS. She stated her opinion that cytokines could be used as a definite practical bio-marker for CFS and was very enthusiastic about this work, and all of her ongoing work, and collaborations with other scientists. She said that her work ties in closely with Jonathon Kerr's work, and seemed to be on very friendly terms with him, which I thought was heartening.

    Prof Leonard Jason
    Leonard Jason gave a very interesting talk (one of the most interesting, in my opinion), mainly concentrating on diagnostic criteria. It was a surprise to me that this was one of my favourite presentations, as I expected the subject to be rather dry, but actually I felt that Prof Jason made a very powerful, and engaging, case for better diagnostic criteria and tools etc. I found it a rich subject area, thanks to his presentation.

    I was already aware of the need for more exclusive diagnostic criteria, but Prof Jason expresses this need extremely well, in a way that made the subject feel fresh and exciting.

    Prof Jason said a lot about the need for better diagnostic tools and criteria, and demonstrated exactly why and how this is so important. He showed how people with major depression can easily get given a CFS diagnosis using the current Reeves' criteria. He gave what I thought was a very powerful speech The impression he gave was of an emerging consensus among the scientists at the conference and that there should be some movement in terms of addressing problems with diagnosis, and collaborating to form a new diagnostic criteria and tools for diagnosis. There seemed to be a consensus that new work was needed in updating the diagnostic criteria and tools, and that things had moved on even since the Canadian consensus definition was established. Prof Jason made a powerful case for this, which I found surprisingly useful, and interesting.

    Prof Jason emphasised the most important symptoms for diagnosing people with ME (i.e. post exertional malaise), and all the speakers seemed to agree that symptoms should be measured over time, and that changes over time should be taken into account. For example, more than one of the researchers said that some of their patients say they used to get sore throats, but don't any longer. There seemed to be consensus that symptoms (in their patients with ME) decreased as disability increased. By this, they meant that people learnt to do less in order to decrease their symptoms, but doing less activity, by definition, decreases function and therefore increases disability.

    Prof Jason reiterated the need to separate ME/CFS patients from patients with 'affective' disorders (i.e. depression).
    The importance of developing criteria in order to enable defining and diagnosing subsets of CFS was specifically expressed by some present (I think that Nancy Klimas specifically expressed an interest in this).

    Dr John Chia and Prof Nora Chapman
    Dr Chia and Prof Nora Chapman spoke (separately) about their individual work with enteroviruses. Dr Chia talked about his new herbal treatment which he developed and which he prescribes to some of his patients with some success. He explained where it can be purchased, and how to take it. He said it doesn't work for everyone (i.e. only works for a subset of patients), but that some patients have experienced considerable improvement in health and symptoms. I believe that Dr Chia's son, who has ME, has taken herbs prescribed by Dr Chia and has experienced a significant improvement in his health. Dr Chia's herbs are based on some herbs used in Chinese medicine, and which are aimed at reducing the viral load of enteroviruses, which Dr Chia believes contribute to the symptoms of a subset of people with ME. Dr Chia said that he thinks the mechanism of the herb is to boost the patient's natural immune system.
    Both sets of research (Chia and Chapman) appeared to be referring to subsets of patients, rather than the whole CFS population.

    Prof Brigitte Huber
    Prof Huber talked about her own research with HERVs (Human Endogenous Retro-Viruses) which, due to evolutionary processes, are integrated into the human DNA. She is particularly interested in HERV-K18, which she has been studying for 10 years. She explained how HERV-K18 genes interact with Epstein-Barr virus (EBV) (EBV is also known as Human Herpesvirus 4 or HHV-4), HHV-6 and other pathogens. This interaction can cause the upregulation of the expression of certain specific HERV-K18 genes. There is a possible relationship between this upregulation of HERV-K18 genes and ME or, more specifically, the severity of symptoms of a subset of ME/CFS patients. Prof Huber described how specific HERV-K18 genes code for certain protein particles. The env gene of HERV-K18 encodes a 'Superantigen', 'a very reactive molecule which reactivates the whole population of T-cells'. This can be up-regulated when an individual is exposed to pathogens, including EBV, and these protein particles can have a disruptive nature which may cause an 'abnormal immune activation', or the immune system to go 'haywire'. Prof Huber has established in her research that HERV-K18 gene expression level is upregulated in CFS patients (without EBV infection) compared to healthy controls, and more so in EBV patients who go on to develop ME. She is interested to find out if there is a definite link between HERV-K18 gene expression and severity of ME symptoms. Prof Huber also expressed an interest in finding out if there is any similar interaction between HERV-K18 genes and XMRV, which is an interesting possibility, as they are both retroviruses.

    Most of this information was new to me, and I found it a fascinating subject because of it's possible implications and because of the interesting aspects of human biology and evolution which it encompasses. This field of research also crosses over into other fields of medicine, such as MS and Schizophrenia which I think also has interesting potential.

    Prof Brigitte Huber - XMRV research
    Prof Huber mentioned that she would be interested in looking at the relationship between XMRV and her own work with endogenous retroviruses (HERVs), and looking to see if the genes of HERVs and XMRV might cross-react or interact. But this has not happened yet, because she was unable to find XMRV in her own research and expressed scepticism regarding the nature of XMRV itself.

    Prof Huber works with retro-viruses (HERVs), and as such, she expressed her excitement, and enthusiasm, for working with XMRV. However, this was dampened after she was not able to find XMRV in her own research.

    In her presentation, she explained how she believed that she should have been able to detect XMRV in her own study, because she was using such very sensitive tests. She demonstrated the sensitivity of her tests and I got the impression that this was a sincere and genuine attempt by an honest scientist to look for XMRV in her samples, and that she was genuinely disappointed not to find it. I think that she genuinely (if misguidedly) thought her science was more than capable of detecting XMRV if it was present (hence her confidence in expressing the need for caution.) This was my interpretation of her opinions which takes into account the round-table discussions.

    Huber said that all her samples are now resting with the NCI, and the impression she gave in the presentation is that she would be very happy for them to be tested positive for XMRV, and that she had no 'ulterior motive'.

    After Huber's samples initially all tested negative, when using a highly specific assay based on XMRV taken from prostate cancer cells, she tested them with another type of test (nested PCR). This gave some positive results. But on further study, she found that her positive samples were contaminated from her own laboratory, and were not showing positive for XMRV (i.e. she was getting false positives due to contamination). "The final conclusion which we came to is that this was due to a contamination... Some reagent in our lab is contaminated."

    For this reason she expressed her opinion that she thought that all the XMRV research, to-date, might be based on contaminants.

    She did not explicitly say that Judy Mikovits' study had been contaminated, but she did imply it when she suggested a possibility of contamination, in terms of XMRV research, generally.

    In the discussion on the DVD, Judy Mikovits successfully challenged Huber's opinion, re-stating that the XMRV virus had been 'isolated', and that it had also been proven in other ways so that it was not a 'contamination' in her study. Huber appeared to soften her previously stated point of view, and re-stated how excited she was about the XMRV research. Judy Mikovits was more than able to defend her research, and Huber accepted that her own opinion was not set in stone, and that she was open to future developments. Prof Huber did seem to be a rather out of her depth in terms of expertise specifically with XMRV research when discussing this subject with Judy Mikovits.

    I hope the conference has enabled Prof Huber to re-evaluate her opinions about XMRV research. I was left with the impression that she will, as she seems so enthusiastic about studying retro-viruses, and appeared to listen to what Judy Mikovits had to say.

    I really thought that this was honest science in action. Some of the negativity on the internet, surrounding Prof Huber's presentation, was somewhat unfair, in my opinion, after watching the DVD. I felt that she was expressing her honest opinion based on the best science that she knew.

    From my point of view, the controversy which surrounded Prof Huber's presentation, reported on the forum, and on at least one blog, was not as pronounced, or significant, as i had expected it to be. Actually, I felt that the negativity was rather blown out of proportion, and detracted from a very positive and constructive conference.

    However, I understand the disappointment surrounding Hubers's statements with regards to XMRV.

    I believe that Prof Huber was expressing her genuine opinion, in an up-front and honest way which did not particularly detract from the conference. But I did have the benefit of being mentally prepared for the worst after reading the blogs, and it was also helpful to have seen the pre-conference discussion between Huber and Mikovits, which is on the DVD, but which those at the conference would not have seen.

    Prof Huber was certainly very forward in expressing her opinion that there is a need for 'caution' with regards to XMRV research.

    She clearly stated that she is not convinced by the Science paper and the WPI research. But she did not explicitly dismiss XMRV research outright; she just expressed her opinion that there is a need for 'caution'.

    I have focused on Prof Huber's presentation because of the previous discussions on the forum. I wanted to point out that I did not find her presentation at all detracting from an excellent conference.

    Please note, that I have written all of this from memory, so there maybe some inaccuracies that I'm not aware of. I have tried to represent the speakers fairly and accurately.

    Please also note that, in some places, I have lazily used the term 'ME' in this discussion, but actually the speakers used the terms 'ME', 'CFS', 'chronic fatigue' or 'chronic fatigue syndrome'. I have been careless in not quoting the exact term that the speakers actually used in their presentations. Prof Leonard Jason used very specific terms in his presentation, and in his discussions, regarding diagnostic criteria. He also referred to "pure ME", at least once, in relation to making a distinction between ME/CFS which has 'post exertional malaise' as a symptom, and other fatiguing illnesses.
  2. Bob


    England, UK
    Has anyone else watched the DVD yet?
    If so, any thoughts to share?
  3. V99

    V99 *****

    Yea it's great. You cover it well.

    Huber may have just stated her case, but she still accused them of contamination, and repeated this more than once. The one as she left the platform was delivered in a dismissive way toward Mikovit's. I do suspect that if she starts to understand how hard this is to find, unless you follow the methods used in the 'Science paper', she is not a problem. After all, this is someone who is looking for the cause.

    As I was lucky enough to be there, the 'Pre-Conference Round Table Meeting' was the most interesting part. The consensus is that heath authorities need to stop prating about and stop ignoring the known science.
  4. Bob


    England, UK

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