London Conference report May 29. 2009

Discussion in 'Fibromyalgia Main Forum' started by consuegra, May 30, 2009.

  1. consuegra

    consuegra New Member

    I am the Patient Advocate for my thirty-five year old daughter. I travel to conferences to observe what is going on in the field. This is not a scientific report. It is a record of my impressions, as limited as they may be. They are presented to give some impression of this conference to those who were not able to attend, particularly patients and patient advocates. I apologize ahead of time for my own biases and editorializing. A DVD will be released of the conference in July and can be purchase for 12 pounds.

    This was the third consecutive year that I have attended this conference. It takes place in a beautiful old building on the southeast corner of Green Park. In many ways I could just reprint my report from last year. One positive note was that there were more participants at the conference. Each year it has gotten larger, and this year it was sold out. The government ministers, who were supposed to attend, were “tied up” and couldn’t make it. The conference resolved to send them a DVD of the lectures, urging them to consider these research and treatment efforts for CFS/ME.

    The attendees seemed to be mostly from the UK. Not very many Americans attend this conference. I don’t know why. Instead there were Norwegians, Danish, Swedes and Australians. There were a good number of patients and some in wheel chairs.

    As with last year, American presenters dominated the conference. These included Garth Nicholson, Dan Peterson, Annette Whittemore, John Chia, and Judy Mikovits. The Belgium doctor/researcher Kenny de Meirleir gave a talk. Basant Puri and Jonathan Kerr gave fine lectures. There were a few British and Australian doctors in attendance, but many were missing.

    The subject of this year’s conference was severe ME - but many other subjects were introduced.

    Professor Brostoff chaired the conference. I had never heard of him and, by the end of the day, I wished that it had stayed that way. I missed the balanced, coordinated discussion and summaries of last year’s leader, Malcolm Hooper.

    Annette Whittemore gave the keynote speech. She spoke of the new Neuro-Immune Institute and the immediate goals. While the Institute building will not be finished until September 2010, the scientists, Mikovits and Vincent Lombardi, and are working feverishly. Annette Whittemore also gave details of the struggle with her daughter’s illness.

    Annette Whittemore’s efforts are very noble and far-reaching. I don’t suppose the ME folks in the UK have ever seen anyone like her. She mentioned that Senator Harry Reid was the greatest supporter of CFS in the U.S. Congress, and that that Senator Reid has made great efforts to bring the Neuro-Immune Institute to Reno. Previous of this, I had never had a very positive picture of Senator Reid - but now that has changed.

    Garth Nicholson gave a lecture on mycoplasma infections in immune compromised diseases, particularly Gulf War Syndrome. He spoke of the connections of CFS/ME in the families of these sick veterans. Dr. Nicholson of course was dragged into this research after his daughter got sick after the first Gulf War. Much of the information presented scan be garnered from the internet and various studies that Dr. Nicholson has presented over the years. It was very good opening lecture and laid the groundwork for subsequent presentations and discussions.

    A Norwegian MS doctor named Harald Nyland spoke of an outbreak of an epidemic of giardia in Bergen, Norway and its connection to CFS. Flashes of humor punctuated his talk.

    The soft-spoken Jonathan Kerr gave an update on his search for subsets and markers for CFS. About five years ago Dr Kerr announced that it would be a year until a marker and two years for a treatment (or the other way around). At that time he was thinking of using existing drugs like Enteracept. That did not work out when he was denied funding. Many people speak very highly of Dr. Kerr’s work and of the strides that he has made. These days he announces no time line and soldiers along, making slow but steady progress. He is involved in important collaboration with the Whittemore-Peterson Neuro-Immune Institute.

    Kenny de Meirleir gave a precise lecture on his experience with very severe ME patients in Norway. He unexpectedly began his talk with a very short film documenting a young Norwegian woman’s descent into a near death isolation. He also had the sister of another very severe ME patient tell briefly of her sister. This young woman has lived in the same house with her sister for four years without every seeing her. Her sister cannot tolerate any stimuli. It was a powerful moment.

    Often the sickest patients, the housebound and bed bound, are forgotten - even at these conferences, where most participants can move about. The ones who need the most help are not represented - although there were a number of patient advocates in the audience. Through this film, Dr. de Meirleir brought the news home and, despite the shocking unpleasantness of the reality,

    Dr. de Meirleir visited, observed and tested 22 very severely ill CFS patients in Norway. In the US, you can’t even get a doctor to bother to make a home visit. Dr. de Meirleir does not fall into such a category and he is looking for answers. He believes the answer resides in the sickest of patients. As a result of his investigations in Norway Dr. de Meirleir has come up with a simple “marker” test for severe CFS. This is a self-administered home urine test that measures hydrogen sulfide. Protea Biopharma makes the test.

    De Meirleir also presented his concepts of the connection of CFS/ME with a specific form of intestinal dysbiosis and presented his manner of testing and treating it. He does not have a particularly treatment for the very severe form of ME, which he characterized as “difficult”.

    At the end of his talk, a variety of pettinesses broke out. I suppose there was some lingering irritation over his “press” conference of the day before. De Meirleir said that he has an independent group examining his protocol and its success rate. There were some expressed differences about the need for a control group. He said that he would do that.

    Dan Peterson gave perhaps the best overview of current antiviral work done at his clinic. He presented the concept of translational medicine, a new paradigm for studying and treating illness. He covered a lot of ground and spoke of his use of Vistide. This guy is terrific.

    Dr. John Chia gave another one of his fine presentations. Dr. Chia has identified a serious subset of CFS, which is identified by real markers – stains of enteroviruses in the stomach. (Of course as soon as a subset is identified and markers established, this no longer is CFS in the mind of the establishment and they use this to further substantiate that CFS does not exist.) Among other things his treatment is Oxymatrine, a Chinese medicinal compound. Oxymatrine brings some improvement in about half of the patients that he treats. His son Andrew, who works closely with him, accompanied Dr. Chia. Andrew is going to Pharmaceutical school with the specific intention on working on pharmacological treatments for enteroviruses. Dr. John Chia was dragged into the field of CFS research and treatment by the enteroviral illness of his son. Andrew is mostly recovered and also dedicated to the field. Dr. Chia is a precise diagnostician, who presents a very clear avenue for some people to explore and possibly get well. Surprisingly very few people are paying attention to this, although this conference has now presented him twice in two years - so they must have some sense of the peculiar diagnostics and success that he has reached with his approach to enteroviruses involvement.

    Dr. Judy Mikovits, who astonished so many folks at this conference last year, was back for another lecture. She made her usual complex and far reaching talk, most of which passed over my head. (I should have studied biochemistry.) Her work at the Institute involves sub-setting CFS through gene array chips and cytokine testing. The Institute is moving very fast and I get a sense that specific information is going to emerge here sooner than later. Certainly talking to Annette Whittemore and hearing Mikovits and Peterson makes one sense something is afoot, although they are smart enough not to say anything. During the question period Dr. Mikovits was asked if they had been working on a specific virus involved in CFS. She answered: yes, and then she followed up that there is a novel virus that has never been associated with this disease and that they had submitted their research for publication. I could not hear the particular publication although I was listening hard.

    This particular one-day UK conference has a distinctly different feeling that the longer and broader conferences that I have attended in the US. However the one-day format is particularly hard-hitting and intense. The lectures ranged from Basant Puri’s report on brain scans, which was quite detailed and scientific, to Norwegian Barbara Baumgarten’s very practical presentation of efforts to develop ME clinics at hospitals in Norway. Needless to say these are quite different areas of consideration, and it becomes almost incomprehensible to the listener trying to combine these various threads.

    However, certain continuity was given by the lectures of de Meirleir, Kerr, Mikovits, Peterson, Nicholson, and Chia, which are tied together by several threads. These include the search for diagnostic markers, the treatment of gut dysbiosis through diet and probiotics, and the search for complicating pathogens, and their treatment.

    Once again I got the sense that the UK has there own specific and serious problems in regards to this complex disease. Many of the participants expressed dismay that the ideas and treatments presented to this conference are unavailable to them under the NIH. (Some of the attendees seemed to be hearing this information in these lectures for the first time.) For instance the NIH will not pay for extensive thyroid testing, or for Acumens’ mitochondrial tests or any specialized experimental tests for this disease. Much like the CDC, the government in the UK does not believe that this disease exists or, if they do, they have no idea what it is, and they don’t seem to want to know. Private doctors like Myhill are available, but the populace is not conditioned to seek out such treatment, which is not reimbursed by the national insurance. The questions from the audience indicate that many patients in the UK live in a bubble, as if the internet does not exist. So much for the managed health system of the UK.

    A final question of the day came from a man who asked the panel of speakers for their assessment of when a marker and further treatments would be available. The questioner expressed his feeling that the speakers had been upbeat, but that he, the questioner, felt that he was lacking specifics about diagnostics and treatment. Somehow he seemed disappointed at the day’s events. A few of the speakers gave vague answers - but no one would give the questioner what he wanted. There was a long silence. Dr. Chia indicated that the question was a bit more complicated; he said that diagnostics for various subtypes were present now and that the problem was getting these accepted. For instance the process that he uses, staining, is not new, nor is it experimental. However, he has difficultly getting anyone to pay attention to or care about his results. Meanwhile he goes forward searching for treatments, and lobbying Pharmaceuticals for drug development for enteroviruses. This fellow’s question ended this conference on a bit of a down note. It was a shame, as it was a day of fascinating talks.


  2. znewby

    znewby Member

    Thank you so much for this. Very much appreciated.
  3. quilp

    quilp New Member

    I am almost the same age as your daughter. I trust that with your help and support she will improve.

    Take care and kind regards, Mark
  4. simpsons

    simpsons Member

    wow thank you very much for this i went last year but could not go this year.

    i was very interested to hear how it went and what was said

    i got the impression last year that judy annette and dan were working on something big and from the you tube clips of annette and judy speaking that there is something coming in the not to distiant future.

    last year i found that it was so much in one day that i just couldn.t comprehend what was being said after a while it became information overload.

    i am so pleased that dr kerr is working still with the whittlemore peterson institute he is such a brilliant dr and you can tell when you speak to him that he really cares so much. i am so sad that he doesn.t get the funding he needs and that the uk government makes life so difficult for him.

    i have geat hopes for the whittlemore peterson institute but also dr chia is brilliant we are so lucky really that we have such brilliant dr's/scientists working for us

    it will be interesting to see the results of prof de M's tests from the patients.

    thank you very much for your excellent report
  5. Forebearance

    Forebearance Member

    Thank you so much for the report, Chris!

  6. QuayMan

    QuayMan Member

    I don't know why one would be proud of that questioner - I don't see what amazing thing he did.

    And somebody saying effective treatment will likely come from research outside the CFS community looks to me like an excuse to not donate to ME/CFS research. I'm sick of people who can spend thousands on speculative treatment, most or all years give little or nothing to research (or try to raise money from they or their family/contacts fundraising) and then complaining that research progress is slow. If more people put their shoulder to the wheel their might actually be progress at a faster rate. (Of course, if people are excited by theories in other areas of medicine and financially supporting this research through donations/fundraising that's ok).
  7. denis321

    denis321 New Member

    It's invaluable for those of us unable to go to the UK ourselves.

    I suspect Americans don't usually attend because there are meetings within the U.S. for those who have the physical and financial means to attend.

    However, I do wish there was more unity among patient groups internationally. It was great to hear Tom Kindlon calling from ?Ireland to testify at the CDC meetings to send a message that this was not only a US issue but an international issue. I'd like to do more on the UK side but dealing with the US tends to take up enough of my physical resources.

    Re: the most severe cases. In writing to the U.S. gov't, I did ask for them to put more research emphasis than they do now on people who are homebound/ bedbound. The people they see in clinics are just the tip of the iceberg.

    One thought would be if people who have particularly severe cases of CFS could send video links of themselves to the CFS advisory committee.
  8. outofstep

    outofstep Member

    The news that Dr. Mikovits has confirmed that WP has a novel virus and are still planning to publish their findings is so incredibly encouraging. It's tragic that funding was not provided to further research the novel viruses detected in the 80s, but it sounds like WP is making up for lost time. We'll have to wait for publication for the details but I bet that it will be worth it!

  9. acer2000

    acer2000 New Member

    So... lets say you order this test from him and its positive for this H2S stuff that he thinks comes from bacterial dysbiosis. Then what? You have to travel to belgium to see him? Does he have a treatment?
  10. consuegra

    consuegra New Member

    Dr. de Meirleir will be giving the details of his recent work at a conference in Norway on June 12th.

    Identify gut pathogens, kill them and then rebuild the gut.

    No, you do not have to go to see him.

    This is not so mysterious.

  11. acer2000

    acer2000 New Member

    Did he mention how he finds out what gut pathogens you have? He had a test in the past called the immunobilan test. I wonder if thats what he uses....