UK Invest in ME conference report

Discussion in 'Fibromyalgia Main Forum' started by consuegra, May 25, 2010.

  1. consuegra

    consuegra New Member

    London Conference

    Here is my report from the Invest in ME conference in London that took place on May 24, 2010. This report is my attempt to communicate to others - to those patients who could not attend (including my daughter) - what I saw and heard. I am aware that this report reflects my own bias.

    This is the fourth year that I have attended the Invest in ME conference in London. The guiding lights of this effort are Richard and Pia Simpson. These dedicated individuals work tirelessly to make this conference happen. Their hospitable and generous presence is felt everywhere, and I cannot imagine a CFS/ME speaker having a better platform from which to make a presentation.

    The one-day conference takes place in a beautiful lecture hall at the very edge of St. James Park. During breaks you can go out and sit in the sun on a park bench and see the world go by. The hall seats 230 people. Each year this conference grows in number, and this year the hall was packed – mostly with patients and patient advocates. Soon the sponsors will have to find a bigger venue. Each year the appropriate government and public health officials are invited to attend and to make a contribution - and each year no one shows up. At least they show a great consistency. (In the UK one is startled by what the NHS does not provide for the citizens of this country. The health care for CFS/ME is Kafkaesque and anyone interested in government run health care should take a good look at this situation and disabuse themselves of their utopian dreams. The situation is pathetic and very sad for the patients, who are desperate.)

    Invest in ME invites the top medical or research practitioners to present at this conference. Surprisingly (or not surprisingly) the participants are increasingly American researchers and doctors. The all-day conference delivers a disciplined and hard-hitting set of lectures, one after another. It is an exhausting but rewarding day and the audience member has a front row seat to the most current issues in CFS/ME, warts and all. In the past I have seen Garth Nicholson, Sarah Myhill, John Chia, Kenny de Meirleir, A. Martin Lerner, Basant Puri and Jonathan Kerr. The lectures are usually 45 minutes long and the day is broken into several sections with two tea breaks and a lunch break. A fine lunch is served. During the breaks conversation is encouraged and it is possible to pigeonhole the speakers.

    The concept behind this conference is healthier and more focused than the semi-annual meetings in the US. These US conferences, of which I have attended two, are four days long and have a great amount of “filler” or academic cannon fodder. The sponsors try to please everyone and in the process please no one. The viewer gets none of this feeling at the Invest in ME conference.

    Mondays lectures started early with Dr. Leonard Jason. He is a good choice to get the day going. I have heard Dr. Jason speak a number of times and each time he is better. He has been previously well received at his conference and for good reason. He presents precise and well-organized statistical information attempting to define the parameters of CFS/ME in a legible and understandable fashion. Given the history of CFS/ME and its various confusions, this is not an easy task. Along the way, he delves into subject matter that is quite surrealistic, often bizarre and funny. Dr. Leonard works is a disciplined way, mostly on his own, out of DePaul University in Chicago. He strives towards clarity regarding the language and definitions of CFS, and he is appreciated and respected by a growing number of people.

    Dr. Jason’s inclinations and work can be gleaned from the internet. This is true of all the speakers. My intention in writing this report is less to detail the contents of the lectures and more to give a feeling about the conference from my perspective. Things are changing with rapid dissemination of information worldwide and personally, I did not expect to learn a whole bunch of useful items that I did not already know. There were a few tidbits that I will include in this report.

    The second presentation was a solid academic talk by Nora Chapman from the University of Nebraska. I imagine that the science of this talk passed over the head of most of the audience, including mine. Chapman and her associates have demonstrated that selection of defective enterovirus in heart and other tissues leads to persistent infections despite active antiviral immune responses. Paired with this lecture was Dr. John Chia, who also works with enteroviruses. Dr. Chia was back for the third straight year and he gave updated research information, including case studies, enumerating his belief that enteroviruses are a major causes in CFS/ME. Dr. Chia strikes a nice balance with his research ideas and his treatment possibilities. In this case, he spoke at length about Equilibrant (Oxymatrine) and its effectiveness in about half of his CFS patients. As he likes to point out, this is a quite a high percentage of success for any CFS protocol. Dr. Chia lectures can be seen online or on DVDs. Cort Johnson has several good interviews of and discussions with Dr. Chia on his site. Dr. Chia collaborates with his son Andrew on research. This year Andrew had to attend classes at the U of Southern California where he is in pharmaceutical school. Among other things he wants to learn and lobby for the development of anti-enteroviral drugs. I was hoping that Andrew could meet my son Peter, who is about his age. Peter was attending the conference and doing a little filming. Maybe next year, the two can meet.

    After the morning break, Cheney gave a lecture on oxygen toxicity and diastolic dysfunction. Cheney’s big problem was squeezing his usual three-hour lecture into 45 minutes - and I can say that he did not do a good job of this. Twenty minutes into the lecture I turned to my son Peter and said that Dr. Cheney was proceeding as if he had three hours - and that he had better speed it up. He didn’t and the consequence was that Dr. Cheney had to just stopped in the middle of his lecture. However, it was not a big problem as any 45-minute slice of Dr. Cheney is worth its weight in gold, and this day was no exception. Dr. Cheney is a quite fantastic fellow. This was his first appearance at this UK conference. Most of what he presented can be culled from his research website or from his recent DVD from April 2009. Dr. Cheney gives credence to the new discovery of a retrovirus. After all, Dr. Cheney has long believed that a retrovirus could be at the center of this disorder. In his lecture, Dr. Cheney indicated that 38 of 47 consecutive patients in his practice were XMRV positive by culture testing at VIP lab.

    Jonathan Kerr gave one of his exquisite low-key barely audible presentations. He plows along in his genetic work, this time speaking on his continuing work to subtype CFS by SNPs. In a nice bit of symmetry his slides matched his inaudibility - and they were completely washed out and unviewable. What was with this? I guess under current circumstances he was embarrassed to be at this conference and wished he were somewhere else. Dr. Kerr used to do very important work. Each year he seems to have less funding. In the past, at the end of his lecture, he would show his band of researchers, shrinking magnificently each year. This time I noticed that he didn’t show the usual picture of his colleagues - so I guess he doesn’t have any. This sophisticated research is fueled by cash and it seems to be drying up. Certainly the UK government gives him nothing. One gets the feeling that the research of this lonely aspirant languishes. He was going to fetch up with the WPI but I wonder what happened to that? Long ago it was my suggestion that Dr. Kerr move to the US where he could make a real contribution to CFS/ME research instead of stalling out. Surely he knows that there are a lot of Brits living in the US and if he moved to Minneapolis I would take him to Brit’s Tavern for a Speckled Hen.

    Nancy Klimas spoke next. She has this sophisticated data sharing system run by Gordon Broderick of the University of Alberta, which could prove elemental in future studies. She gave a talk on immunological biomarkers, which others have described exquisitely This study ties in handsomely with what goes wrong in various pathways and extends the work of other studies. She has a loyal patient base with far reaching implications, including a new treatment center. I prefer Kerr’s quietness or Peterson’s dour seriousness to Klimas’ cheery optimism - to each his own. I have seen her talk on various occasions, perhaps five or six times, and I cannot personally get beyond the impression that "she overplays her part".

    Towards the end of the day, things heated up a bit. Brigitte Huber gave a talk on her HERV-K18 research and then added a coda on XMRV. She did an unexpected and gratuitous job of sandbagging Judy Mikovits, who was the next speaker. Huber methodically went through her recent XMRV “study”, explaining in her officious voice that her PCR test was the “assay of choice” and “very sensitive”. She tested 228 samples, 112 from Susan Levine, 105 from Taylor in Chicago, and 11 from the HHV6 foundation. Then she put up a slide with red letters that said, “All samples were negative for XMRV integrase”.

    Huber said, “We cannot see in our patients XMRV like in the Science article”. In a further confounding maneuver she hinted or charged that the WPI study was “contaminated”. This charge needs to be challenged, as it is a lie. As she was leaving the lectern Huber said in a wonderfully disingenuous voice (to no one special, but I suppose it was directed towards Judy Mikovits), “Sorry”. It was a revealing and weasily moment.

    To me it is becoming obvious that certain people, especially doctors who have been treating patients unsuccessfully for years with half-baked treatments, or researchers who are connected to the academic research money tit, are trying to sink Mikovits and the WPI. This is not science; this is venality. This negative reaction has little to do with whether XMRV has any validity or not. That is a separate issue and there are two sides to the argument; and it needs to be fought out according to established scientific methods. I think that certain critics sense, perhaps correctly, that soon they might be out of a job.

    The day before the conference, there was a brain storming session with the various participants at this conference – Cheney, Chia, Huber, Jason, Whittemore, Chapman. It is a great idea and discussion/disagreement (sometimes fierce) is often a necessary and useful result of such exchanges. In this afternoon session, Huber launched an attack on Mikovits. Mikovits did her usual job of defending herself. Huber left the group early (maybe to go shopping?). As she left Huber promised that she would not create a controversy by revealing her study results the next day.

    Overnight Huber changed her mind, honest soul that she is, and made her awkward revelation. It was all quite unseemly, and did not fit the tone and tenor of this conference - which is heavily ladened with sick patients, hanging on by a thread. They make a great sacrifice to get to this conference, but not to hear this kind of shit. After all this is really not a scientific conference, and this nice bit of spite was entirely out of place.

    When was the last time that Huber gave one iota of thought about CFS patients? I can tell you exactly – it was… Never!

    I watched this with fascination, realizing that Huber in her righteousness had put her head on a block and asked to have her face kicked in. It was a great setup, a “once in a lifetime situation”, and Mikovits came through big-time, doing what she needed to do. She remained calm (inside she must have been boiling) and delivered a splendid lecture (the best that I have seen her do) and demolishing Huber. The effect was that Huber shrank down to the size of a pea. I had talked to Mikovits the day before about Huber and advised her in general to disregard her critics and just roll over this woman (not that Mikovits spends one moment listening to me). Some critics need to be rolled and this was just what happened. At the end of her lecture, Mikovits got a loud and sustained applause showing deeply felt appreciation.

    The moderator of the conference once again was Malcolm Hoover, who represents the best of the UK ME doctors and researchers. Dr. Hooper is known for the Hoover files, which are included on the conference DVD to be released in several weeks. Dr. Hoover has an easygoing manner, moves things long nicely, keeps the conversation focused and gives helpful commentary when necessary. This man obviously has multiple gifts.

    Invest in ME’s primary idea (I believe) in creating this conference was to bring the most recent research and treatment information to the UK, a tidal backwater in regards to recognition of the seriousness of this disease (not that the US is much better). Beyond this they want to facilitate these personalities to sit down and talk together and to share their ideas. In general CFS doctors and researchers are a lonely band of folks, comfortable and happy with their isolation. In other words their social skills are limited, especially in relating to each other. In the last few years, things have gotten much better in this regard, mainly due to this conference and a few other “retreats” of CFS/ME notables, supported by private donors.

    The high-mindedness of these talks always disintegrates at the end of the day with a plenary session where patients and patient advocates plead for treatment advice – treatment readily available in the US and denied the patients in the US. (Whether these treatments work or not is another conversation.)

    The question is why, with so much of this information readily available, one would bother to attend this conference. It is a good question. My answer is that this conference allows me to get a sense of the direction of things, the “zeitgeist” of this field - and also to talk directly to the participants in the more informal parts of the conference. Unexpected things happen and one picks up bit of information or has other items reinforced. For instance, I got to hear Dr. Chia talk for a few hours at dinner. What a pleasure this was! I got to watch him “interrogate” a patient advocate about their patient. Dr. Chia seeks out particular symptoms and circumstances that occur at the onset of the illness. It is a bit like 19th century medicine - but CFS/Me is a 19th century disease. And this form of questioning yields answers for Dr. Chia.

    I have been inclined towards Dr. Chia since I first heard him speak. He has a forthright, unadorned quality that is makes you pay attention. Dr. Chia has worked in the trenches for twenty or more years, learning about this illness the hard way, and developing his own resources to maintain and increase his research. Dr. Chia is definitely onto something “specific” - in a field where so much is elusive and speculative. If I were going to give a newcomer to this field a bit of advice (and I do not have a whole lot to give) I would recommend learning about Dr. Chia, his testing and his treatment. It is a good bet, and perhaps you will get lucky.

    At another point, I got to hear Dr. Cheney give an informal mini-lecture on parts of his protocol: artusenate, minocycline, wormwood, and cell signaling factors. In regards to this last item Dr. Cheney related his enthusiasm about a new gel that he has made from afterbirth material. Citing studies on hamsters, Cheney described a process where non-stem cell material is extracted from stem cells and injected back into the hamsters, curing them as if it were stem cells. Dr. Cheney has made a similar gel from human afterbirth that gets a very strong reaction on his Echo machine, much stronger than any existing CSF. He is very excited about this.

    I observed several individuals from the WPI doing their presentations and establishing connections. I can assure you that the announcement of the demise of the WPI is premature. They are moving faster than ever. The WPI is on a trajectory that will leave its critics in the dust. While others quibble over this and that, and lay traps to distract them, the WPI are putting all that aside and focusing on the task at hand. More specific and accurate testing is close at hand, as is means to track improvement in patient’s immune status, as well as clinical trials using various existing anti-retroviral drugs. Peptide T is still in the picture. (Another non-WPI source indicates that GCMAF might be a player.) (Time will tell in all this and the nay-sayers have put great effort into trying to cut off the funding and grants for the WPI. In this they have been somewhat successful, leaving it to the rest of us to do what we can to increase funding for this important scientific research.)

    The WPI is in the process of projecting and clarifying their mission and of making collaborative connections with the international community in a manner that has never been seen before in this disease.

    This was a great conference.


    [This Message was Edited on 05/28/2010]
  2. simpsons

    simpsons Member

    thank you i looked here as i remember you post here every year i left it to late to get a place this year so will have to buy a dvd

    its so sad that these scientists can.t get together and test each others samples and patients and work together more the only ones i can see doing this are dr chia judy and cheney

    three cheers for cheney chia and wpi

    what if we the patients could put together a fundraiser and split it between the three and the only condition being that they cross check each others patients

    interesting to see that the german scientist found xmrv in respiratory tract of some patients was that mentioned at all

    if there were for example a fault with the wpi system then how come their controls don.t show up positive

    can.t wait to see how this pans out over this year to come

    again thank you
  3. bigmama2

    bigmama2 New Member

    thank you so much for posting this. so helpful to hear what is "going on" in cfsland.

  4. quanked

    quanked Member

    I copied and pasted your post into word so I could make the document readable. It was worth the effort.

    Your descriptions of the relational transactions are interesting and entertaining on some levels. What your words make me think is progress in research for cfids/me is seriously threatened by all this relational stuff.

    Was the applause for Huber strong? If these Huber types have their way we will never find the cause of CFDIS/ME.

    Thanks for all your effort to take the time to write this up.
  5. consuegra

    consuegra New Member

    Frankly I do not remember if there was any applause. If there was it was perfunctory.

  6. gapsych

    gapsych New Member

    Thank you for taking the time to report on this conference. I am sure it took a lot of time and effort. You perform a great service for those of us unable to attend.

    I do have one bone to pick, not with you per se as you are upfront that this is your perspective. However, I find the the criticism of Dr. Huber that I have seen on several sites worrisome. Science is about presenting research, to digest it, question it, turning it upside down if need be to come up with valid conclusions. You mention how important this vigorous debate is in your summary.

    However, I get the feeling that people did not like what Dr. Huber had to say as it could be construed as criticism of the WPI. We can't simply dismiss someones research simply because we don't want to hear the outcome.

    Don't think for a second that I don't want XMRV to pan out. I don't know Dr. Hubers research so cannot comment on that however it appears that people are focusing on her conclusions without looking at her studies. Her research may be shoddy, it may be excellent, but until we look at all the research out there in an objective manner, science will not go forward.

    Perhaps, I am missing the part about where her research fails. It may be that it does and I would love any information on this.

    The bottom line is by looking at all sides of a scientific query, science will eventually come out ahead. We need to focus on how the research is done, its validity, reliability instead of just coming to the conclusion that someone is incompetent simply because of an outcome that may not be to our liking.

    A medical conference is for presenting different ideas. Did I misread the intent of this meeting?

    I think people are confusing the enthusiasm for XMRV with science/research. This is the equivalent of shooting ourselves in the foot.

    Please accept this as it is intended. I think it is an important point. If we start being selective about outcomes of a study without giving the study a through dissection, we are not helped in the long run.

    Again, thank you so much for your reports. As always, they are appreciated.

    Take care.


    [This Message was Edited on 05/27/2010]
  7. consuegra

    consuegra New Member

    Thanks for your carefully articulated points. I believe very much in serious science and it is the only real hope of how to get out of this disease.

    I have no problem with Huber's science. When I first read about it, I was excited and will continue to follow it. She made a nice presentation about it and presented very early results, which in itself was questionable as I had not seen many people do this so early. It seemed an unnecessary effort to pump up her study. That was how I saw it.

    The revelation about her XMRV study was pure politics, a great sandbagging attempt. It had nothing to do with science. I think most people in the room felt this. Of course many people are attached emotionally to XMRV, but not I. I think XMRV should live or die based on its scientific merits.

    I, a non-entity in this field, have known about the complete failure of one wing of this study for a number of months. The announcement came as no surprise to me. What was surprising is that she lied about making the presentation. In my estimation, the dropping of this bomb in this conference was motivated by something else. I am not sure what this "something else" is, but it is deeply troubling, particularly for patients of this disease who have been so underserved for so long, and sandbagged so often by forces that none of us completely understand.

    As I see it CFS patients have two major problems: isolation, and the disbelief factor (of the illness). This is a deadly combo. The discovery of XMRV cracked open the situation and gives this community it first real break to get to some real research to answer this illness. If the situation disintegrates at this point, if it falls apart, it will be everyone for themselves again and no solution for many more years, if ever. That is why this moment is so very important.

    I think those who care about science have to stand up for it and not let it be hung out to dry. Dr. Bell is afraid is going to happen. He has seen it before. Someone, somewhere does not want serious research to go forward in CFS/ME. I know this is a difficult concept to really grasp as it is so paranoid and to have to think about these kinds of things as one fights an already taxing and confusing disease is a problem, a real problem. So I am searching for clarity, to the degree that I can find it.

  8. gapsych

    gapsych New Member

    It is so frustrating that these types of "politics as usual" are often seen in the scientific community. There's a pervasive "publish or perish" mentality that is counterproductive to the true meaning of science. Competition among researchers can be brutal. Please understand I am not talking about any particular group or even CFS/ME research, but in general.

    The above only contributes to any negative perceptions regarding why research is not always forthcoming.

    The CFS/ME community has been so disenfranchised it is understandable why we want answers as soon as possible. I know I do.

    The reality is that we first need more research on replicating the WPI's results and the scientific community has an obligation to reach a consensus about what procedures are used to find this. If XMRV is there it will eventually be found. If found then further study will be needed as to what the association between XMRV and CFS/ME means, what treatments are viable, etc. This is all time consuming.

    We have to keep our minds open even to the fact that there is a possibility that XMRV won't pan out. It may apply to only certain sub groups (my hunch). It may take some time for all of this to fall into place. I am not being negative, just realistic.

    It's painful to think about this process taking so long.

    There is still a lot of work ahead to settle this debate and we must make sure that the science behind any theory is sound.

    But I do believe that science will prevail. It just takes time.


    [This Message was Edited on 05/28/2010]