London ME/CFS conference report

Discussion in 'Fibromyalgia Main Forum' started by consuegra, May 24, 2008.

  1. consuegra

    consuegra New Member

    I am a patient advocate for my 34-year-old daughter. I attend CFS conferences and try to learn about this disease. I am not a scientist. Consequently, much of what I hear, I do not understand. However, after a number of years now, I do have a feel and a respect for the complexities of this disease. For those interested, here are my observations of the one-day ME/CFS conference in London May 23, 2008. Having written these notes for my own use, I have no further comment to make on them. More knowledgeable and useful reports will hopefully appear, and there will be a DVD of the presentations at this conference

    The conference was chaired by Dr. Malcolm Hooper, a revered UK ME/CFS doctor.

    The conference began with a very excellent hour-long lecture by Dr. Leonard Jason from DePaul University in Chicago. He is a psychologist who studies CFS statistics, demographics and terminology. He spoke at the International conference in Ft. Lauderdale and gave the same lecture addressing the importance of precisely defining the CFS population. He also elaborated the various shortcomings of not having done this yet. He spoke of the various weaknesses of the 1994 Fukada definition (a committee decision) - and of the 2005 Canadian definition, which is slightly better. His lecture was both fascinating and depressing, as there are great pressures from different directions to either expand the definition or contract it. As usual in such matters, the bottom line is money.

    Dr. Jason makes huge efforts to sort out the patient population. Part of this involves developing apt questions to tease out a meaningful response. For instance a particular question or set of questions will try to measure “the severity of self-reproach” in various overlapping patient populations. If you ask a patient with depression, “If you were well tomorrow, what would you do?” you will not get much of an answer. If you ask this of a CFS patient, you immediately get a long list of things that they would do. The response in the room indicated that most attendees understood exactly what he was saying.

    As an example Dr. Jason spoke of the recent CDC definition, which instantaneously expands the former estimated CFS patient population of 400,000 to 4 million. It is a nice trick and many people are happy with this - as it supposedly makes the disease more prevalent and real; and this will supposedly draw more researcher money. Dr. Jason aptly pointed out the flip side of this where under the new definition a “CFS patient” need not have “post-exertional fatigue” or “fatigue of six months duration” and other hallmarks of the disease. The reality is that these new parameters host a great number of patients suffering from other disease states, including depression. After hearing Dr. Jason speak, one would have to worry about the CDC. All this is a little desultory and depressing, as Dr. Jason soldiers on with very impressive arguments to define CFS more accurately and tightly, which will eventually lead to more identifiable subtypes, the subject of this conference.

    Next up Jonathan Kerr gave his usual fine low-key and precise lecture. He is usually allotted a half-hour, which I suppose is all that he needs to elaborate his work. He presented his gene expression work in his soft-spoken voice, and there was nothing new here. He and his group have identified seven subtypes, each which has a potential treatment with existing drugs. They are working on a marker (or markers) in order to identify subtypes. No timeline for a marker, or makers, was given. Presumably and eventually, trials with specific existing drugs with subtypes could be done. Kerr did reveal that his application for a trial of Enteracept on a subgroup was turned down by the government, and that this trial is not going to happen. The most poignant moment came at the end of his lecture where he put up a picture of his “group”, the same photo he has shown in the past - six researchers. This group has now dwindled to three - as his funding has been cut, and he gets no funding from the UK government health ministries. Fortunately he is working in collaboration with a group of Americans, who have a deeper appreciation of his work.

    Dr. Martin Lerner made a longer presentation on his work sponsored by the A. Martin Lerner Foundation. This was the first time, I believe, that Dr. Lerner has spoken in the UK; and there was the sense that few members of the audience had a clear idea who he was or what he does. Dr. Lerner presented a lecture similar to the one that can be seen on the Internet, with the significant addition of recent long-term data. Dr. Lerner is probably the most experienced doctor in using anti-virals for subsets of CFS in the world. Highlights of the lecture are expressed here. Dr. Lerner has compiled six years of data of 180 patients, including 5000 visits and 45,000 pieces of information.

    Dr Lerner has separated the 180 patients into two groups with similar demographics: Group A (138 patients) - CFS Herpes virus illness (EBV, HCMV, and HHV6, in some combination) with no coinfections, and Group B, CFS Herpes virus illness (EBV, HCMV, HHV6 in some combination), with co-infections (Lyme, Babesia, etc). He presented information only on group A. Lerner uses the Fukada definition. Patients in Group A were identified through positive IgM recombinant p18 monoclonal VCA, abnormal Holter monitor assessment and abnormal cardiac wall assessment. More specific details of this screening are publicly available. Specific long-term pharmacokinetic therapy, (Valacyclovir, Valgancyclovir) was administered to each patient. Using his own Energy Index (EI) point score (1-10), Lerner determined the mean score for 138 patients at baseline was 4.5. The mean final EI point score was 6.0. These data indicate that specific long-term pharmacokinetic administration of Valacyclovir/Valgancyclovir provides long-term significant benefit to Group A patients. There was no toxicity to this long-term antiviral therapy. In answer to a question, Dr. Lerner indicated that there were remarkable improvements to heart irregularities.

    Dr. Lerner strongly believes that viral subset CFS treatment options exist right now, today. His foundation is working on a DVD training film for physicians. While Dr. Lerner holds various patents on his treatment protocols, with several more pending, he gives every indication of being a dedicated practitioner and researcher who wants to get his information on antiviral treatment to a wider audience.

    Dr John Chia followed, as he presented his ideas on the causal relationship of enteroviruses and CFS, including his treatment with alpa-interferon and ribavin. This man is a very serious doctor and with his son has made great steps towards identifying a CFS subset. As with Dr. Lerner, it seemed that few in the UK knew of Dr. Chia and his research. Information on his investigations is available on the Internet.

    The last major lecture was an incredibly high-powered presentation by the American researcher, Dr. Judy Mikovits. She is the research director of the new Peterson Whitmore Center of Neuro-Immune disease in Reno, NV. In a lecture of which I understood next to nothing, she gave every indication that this institute has the funding, the drive and the independence to reveal some important elements of this disease. She also indicated a no-nonsense willingness to cooperate with others world-side in this struggle. I have seen many scientists make presentations, and this gal was amazing. With this presentation, along with the others, there was a clear picture that the Americans were back in the UK doing what they do best.

    Additional lectures were given by Dr. Julia Newton, who gave a very clear and useful talk on Autonomic Dysfunction, a distinct subgroup in CFS, by Dr. Irving Spurr, a UK doc with great practical experience, who presented his ideas for treatment of CFS, and by Dr. Jean Munro, who gave case histories of CFS treatment by her group in the UK.

    The final set of questions to the entire panel (including the addition of Dr. Tae Park from S. Korea, who had a poster paper on his IVIG treatment), gave some coherence to the topic of the day. At times, it was difficult to believe that these different speakers - with their diverse angles and experiences working with ME/CFS - were actually talking about the same disease. A nice bit of drama was added when Dr. Spurr stated that there was no evidence that anti-virals were effective. At this moment, Dr. Lerner looked a little dispirited. However, Dr. Lerner quickly recovered and reemphasized the positive results of his work; and various others joined him in expressing the belief that there are treatments available at present for distinctive subsets, and that more treatments with existing drugs will come online as subsets are identified.


  2. mindyandy420

    mindyandy420 New Member

    for the information. I'm glad that you are sharing this with us.
  3. Juloo

    Juloo Member

    That report took a lot of time and effort, and I truly appreciate it! There are many on here that have been eagerly awaiting news of the conference, and will be happy to see this.
  4. znewby

    znewby Member

    I was a little confused about the reference to Dr. Lerner: "Specific long-term pharmacokinetic therapy, (Valacyclovir, Valgancyclovir) was administered to each patient. Using his own Energy Index (EI) point score (1-10), Lerner determined the mean score for 138 patients at baseline was 4.5. The mean final EI point score was 6.0. " I find that 4.5 improving to 6.0 is a smaller improvement than I expected. It doesn't sound like much of an improvement to me.
  5. consuegra

    consuegra New Member

    here is a direct quote from the brochure:

    “Among the 138 Group A herpesvirus CFS patients there were single virus infections, EBV patients (27.5%); HCMV (13.8%) and HHV6 (1.4%). However, more commonly, each CFS patient was infected with several herpes viruses simultaneously: (79 patients with multiple herpes virus infection (57.2%). There were EBV/HCMV co-infections (28.3%), EBV/HHV6 coinfections (10.9%); HCMV/HHV6 coinfections (5.1%); and EBV/HCMV/HHV6 coinfections (13.0%). Specific long-term pharmacokinetic therapy was administered to each patient until the EI point score reached 8, at which time, antiviral medicines were tapered, stopped, or continued, as appropriate with no change in the EI point score. The EI point score at 3 month intervals for the 6 years of the study was recorded. There were a mean of 46 EI patients at each 3 month time interval and 25 time intervals over the 6 year longitudinal study. The mean EI for the 138 CFS patients at baseline was 4.5. The mean final EI point score was 6.0, an increase of 1.5 EI units and, therefore, a large EI effect size change (Spearman’s p nonparametric correlation test, Spearman’s p= 0.562, p=0.0019). These data indicate that specific long-term anti-herpes virus pharmacokinetic administration of Valacyclovir/Valgancyclovir provides long-term significant benefit to Group A CFS patients. “

  6. findmind

    findmind New Member

    You are absolutely amazing! Thank you so much for these very clear and diverse notes on the conference.

    Beware of the CDC, indeed; I've been aware and bewaring of them for 14 years, ever since they changed the criteria for CFS.

    I can't wait until the Whittmore Institute opens its doors and begin testing/treating patients. Then we can see if they are serious, or are just filing patents and waiting to get rich, like so many others. (Like Dr. Lerner, maybe.)

    Thank you again....

  7. ladybugmandy

    ladybugmandy Member that was an AMAZING post. thank you!!!

    i, too, was a little disheartened that dr. lerner's patients' mean EI score went from 4.5 to 6...i was expecting something very different, given the fact that he followed these patients for 6 years!


  8. Rafiki

    Rafiki New Member

    What a wonderful effort! We've all been on tenterhooks over here. Now, I feel as though I missed nothing.

    A very grateful Canadian,

  9. 28years

    28years New Member

    thanks so much for posting all that information!!!!!!!!

    I too am a little disappointed that Dr. Lerner's numbers for improvement weren't larger. But then I thought about it. As far as I know this is the first long-term study of any treatment that is shown any improvement (I may be wrong).

    Also, my energy level index is 2. So if I was able to increase that by 1.5 points, that would almost double my available energy. And perhaps more importantly for me, it would stop the progressive nature of the illness.

    does anyone know how to get the DVD of this conference in the US?[This Message was Edited on 05/24/2008]
  10. znewby

    znewby Member

    Thanks so much. I vote you our best conference reporter! Now, when did you say you were going to the next conference?

    I'm only kidding of course.
  11. gapsych

    gapsych New Member

    Your advocacy has not only benifited your daughter but has also helped many on this site who are interested in what happened at this confrence.

    Thanks so much for posting.

  12. acer2000

    acer2000 New Member

    His results are very impressive. I wonder if we can get more details about his workup and his treatment. IVIG seems hit or miss in previous studies. I wonder how he decides who to use it it.
  13. znewby

    znewby Member

    Dr. Lerner stops antivirals when the EI score is at 8. I wonder why? I would have thought that if he had a cure he would bring the index to 10.
  14. victoria

    victoria New Member

    Thanks, I didn't know Dr. Lerner put people into 2 subgroups, it makes a lot of sense....

    but I have to wonder what he does with pts that he feels fits into Group B (those with stealth bacteria like lyme, mycoplasma etc)?

    Food for thought and further research; I hope he doesn't just leave them hanging - ?

    all the best,

  15. Lichu3

    Lichu3 New Member

    The thing that is confusing to me is whether the results Lerner talks about are clearly expressed. In the sense that if an "average" of 46 patients were at each time interval, whether some people dropped out during the time he was following them.

    If individuals are not tracked effectively at each time point, it makes the results difficult to interpret. Having read Lerner's papers in the past, I find he tends to be convoluted in how he expresses his results. I have a scientific background and I still have to read what he's written a few times to get at what he's talking about.

    This looks like a retrospective study -- i.e. people weren't adhering to a specific protocol where they were all seen regularly every 3 months for 6 years. Rather, data put together after the fact. So the data is likely limited but still useful.

    So, I hope he publishes these results later on.
    [This Message was Edited on 05/24/2008]
  16. consuegra

    consuegra New Member

    Dr. Tae Park is an interesting figure. He hangs out at the edge of these conferences with his wife and talks to anyone who will listen. His IVIG treatment is closely tied with dietary and lifestyle (pacing) strictures, items about which very few others talk.

  17. acer2000

    acer2000 New Member

    So do his patients do as well as he claims in his paper? He says they have KFS score increases to almost normal and go back to work. Are they really better? Or is he just eggagerating? It certainly is encouraging. I wonder how he selects which patients will do well on this regieme. Does he have contact info on his paper? I kind of want to email him... I'm curious.
    [This Message was Edited on 05/24/2008]
  18. very interesting post,many thanks.

    love fran
  19. consuegra

    consuegra New Member

    There is another report on this UK conference at the Myhill message board and it makes very good observations.

    The important point of this conference to me is that it seems to indicate a turning point in thinking about this disease or set of diseases. People get together in this conference room and hallways and share ideas, and you can sense things are happening. The days are past of just dosing a drug on an experimental basis and seeing what it will do.

    Several things are happening at the same time. The mechanisms of certain subsets of CFS are being better understood, an awareness of the necessity of tighter definitions of CFS is being expressed, and the diagnostic tools are becoming better.

    In watching Dr. Lerner operate, it is difficult to determine whether he is primarily a practicing physician or a researcher. He seems to be both, and he has the curious habit of not tooting his own horn, at least not in public. Dr. Lerner is a quite fantastic fellow. He indicated that people at the A. Martin Lerner Foundation (privately funded) had diligently assembled this data based on retrospective and current information of 180 of his own patients. I think Dr. Lerner assembled this data to convince others of what he already knows: with the correct diagnostic workup, judiciously and professional administered long-term anti-virals make many people (in this subset) feel a whole lot better - and the drugs are safe.

    A few other thoughts: Dr. Lerner spoke of the importance of not exercising until reaching the stage 8 on his EI. Dr. Lerner’s diagnostic slides of EBV in the heart muscle are a little scary, but he had presented this before. I asked Dr. Lerner about the EBV IgG antibodies as a diagnostic tool and he said that they were “totally useless”. Dr. Lerner had another good piece of advice. “Increase what you do when it is easy.”


  20. ladybugmandy

    ladybugmandy Member

    i agree...dr. lerner is very passionate ...probably because he had the disease.

    i honestly do not know why there is still so much resistance to using long-term antivirals. there have been several studies showing that antibodies do not tell the whole story. in many cases, tissue culture shows active virus despite low antibody levels.

    i am glad dr. lerner knows this!

    i suspect many - if not most - patients, such as myself, who got sick after mono or some flu, were always convinced they had persistent infection and wanted antivirals. i know i tried hard to obtain acyclovir 15 yrs. ago and was laughed at.

    funny how we need doctors to prove what so many of us already knew.

    i just do not understand why the concept of persistent, low-grade infections is so hard for doctors to swallow. have we learned nothing from the mistakes of the past...of not thinking outside the box?

    (i am talking only about the EBV/CMV/HHV6 subset of CFS here, of course).

    there is a quote i came across in an HIV article i was reading...a researcher said "beware of grey-haired scientists who tell you something is impossible."

    40 years ago, HIV was thought to be untreatable...and until very recently, definitely incurable. however, a german group has recently the laboratory only.... that a particular enzyme (Tre) can actually remove the HIV viral DNA from the host DNA! this is integrated virus!

    [This Message was Edited on 05/25/2008]