Tuesday, June 4, 2013

Invest in ME conference 2013


Several friends have written to ask me: “How was the Invest in ME conference?” “Anything good?”  I can answer them. It was good, - very good.

I started the conference day quite early with my usual long walk down to the conference site. It takes me down past Buckingham Palace, through St. James Park, past the Horse Guards and along Birdcage Walk.  It was a fine enough morning although I was a little tired, not having gotten much sleep. (I am always anxious before this conference.) This part of London in the late spring is very beautiful and green - and quiet in the early morning. Along the way, I thought about my daughter and all the others who are so terribly limited by this illness.

Pia and Richard Simpson’s work to consolidate research in the field is beginning to pay off.  Each year they carefully select a group of clinician/researchers to present their work, often bringing back certain key individuals year after year.

Such was the case with the opening speaker, Dr. Dan Peterson, who is working hard to create a legacy for his lifetime’s work. Dr. Peterson religiously attends this conference every year, whether he has a speaking slot or not. More clinician/researchers should be doing this - as a great deal of information is exchanged at this conference. I preach to whomever I can that this is "the place to be", but so far I have been unable to persuade any other Americans to take this trip. Americans are making a big mistake not going to this conference.

Dr. Peterson gave a quick overview of the current state of affairs in ME/CFS research, and also spoke of the recent FDA meeting. These ideas, presented in two minutes at the FDA, are written up by Cort Johnson here. Dr. Peterson’s broad collaborative research ideas, based on his many years of clinical practice, were a perfect lead-in to the rest of the day’s lectures.

This conference day had been preceded by a pre-conference roundtable discussion involving 39 researchers in ME/CFS and various other fields. Invest in ME tries to promote a broad-based research approach to this complex illness or set of illnesses by reaching out to researchers outside the field of ME/CFS. The key words are collaboration, inclusion, and expansion. Some collaboration has been very successful, others not so much. Regardless, if you get this many serious people in one room for an entire day discussing a focused theme – "Infection and Immunity in Myalgic Encephalomyelitis" – something is going to happen. The Invest in ME model – a day of private meetings and a day of public lectures – is a very strong format.

Next up was Dr. Andy Kogelnik of Open Medicine Institute. Dr. Kogelnik gave an overview of the work at Open Medicine Institute and its offshoot, the OMI-MERIT ongoing effort.  He spoke less about clinical work and more about the larger picture in approaching this illness, involving collaboration, technology and data gathering.  OMI-MERIT has a game plan and he presented it. He also spoke of the explosion of tracking and measuring devices, including an EEG for the Iphone. Later, Dr. Kogelnik mentioned to me that Dr. Eric Schadt of the ME/CFS Center at Mt. Sinai has joined the OMI-MERIT collaborative effort. This, to me, is very good news. 

Dr. James Baraniuk is doing such important work on the brain and Gulf War syndrome. He was not able to make the conference this year. In his place was his colleague Rakib Rayhan. This was Dr. Rayhan’s first public presentation and he made it a good one, presenting information from a recent paper on Gulf Wall illness and indicating that there will be more papers to come - and an expansion of the research into ME/CFS patients. Rakim got a good taste of “scientific discourse” as a clinician in the audience tried to take apart his research. Rakim did a pretty good job at defending his work.

In an entirely separate incident I was surprised (in conversation) to hear Dr. Jonas Blomberg, a Swedish virologist from Uppsala, dispassionately challenge (or contest) Dr. John Chia’s work, work which I always held in such high regard. This is not really news to Dr. Chia, as the two of them have an ongoing discussion.  The nice thing about having an open, collaborative discourse environment is that when you ask a question, you get an answer.

Mady Horning gave a fine talk, echoing the one she gave in Florida in January. That talk can be accessed here. She spoke of the terrain and genetic defects leading to ME/CFS - what variables contribute to getting ME/CFS. In a follow-up question she was asked what we all want to know. What information can she give about the ongoing CFI Lipkin study? She said that 80% of the blood work is done, but that much additional work needs to be done on saliva, feces and urine. She said that they had identified several promising pathogen “candidates” including a “novel pathogen” - but the work was still early and no conclusions can be drawn. I have heard the term “novel pathogen” somewhere before. 

The policy of Invest in ME leans towards inclusion. This year they reached out to Dr. Clare Gerada, who is married to you-know-who. Dr. Gerada accepted the invitation, which might or might not have been a surprise. A person in this position, a high-level professional government figure, addressing a predictably hostile audience, has several means of handling this. Most would come and express their concern for the specific illness, promise to do what they can and answer a few questions, all the while maintaining a professional but friendly distance. Dr. Gerada chose a different approach that bordered on the bizarre. She chose to describe in detail her own job and the difficulties and unpleasantries that she suffers on a daily basis. Let me tell you about my problems. It was a surprising and confounding lecture to give to an audience of sick patients and their advocates. She reminded me of my mother. Enough about you, let’s talk about me. The message that she seemed to be delivering was if you think things are bad now (regarding the NHS), they are going to get worse. I kept saying to myself, "You have got to be kidding me. What is this?" I was astonished to hear her say that she would not know how to treat an ME patient. Perhaps she should be introduced to Dr. Irving Spurr. He would tell her - treat the ME patient with compassion, with understanding. He would explain the positive benefit of real doctoring - handholding, not handwringing. This is the very thing that I cannot get for my daughter in MN - a doctor who understands how to be a doctor and what it means.

Dr. Gerada took the audience into “wanting to shriek” territory. The moderator Ian Gibson put the lid on the situation in a rather heavy-handed fashion and attempted to guided the questions. Nevertheless, several extremely articulate patients (or advocates) were able to extract some acknowledgment from Dr. Gerada that ME was a serious illness, and some admissions that she might be able to help. The entirety had an unpleasant and disingenuous feeling to it. I always get worried when someone looks down or sits back as far as possible when answering a question. Psychologically speaking, Dr. Gerada's body language was not encouraging.

She left when she left - right away. There was no aftereffect. In this way she did us a favor - as an absurd counterpoint - an intermezzo really -  to the serious conversations that were about to resume. Rest assured that this "bizarre episode" made no dent in the positive flow of the day. The only consequence of the extended question period with Dr. Gerada was that it impacted the next two lectures, which had to be presented in truncated versions. It was unfortunate that Professor Sonya Marshall-Gradisnik had to cancel at the last minute. She is doing important NK cell research and I was looking forward to her update. Her colleague Dr. Don Staines presented her research for her, as I said, in a somewhat truncated fashion.

Two new researchers attending this conference were Dr. Amolak Bansal of Epsom and St. Heller University Hospitals and Dr. Carmen Scheibenbogen of Berlin Charite. They both gave presentations that tied in in many ways with the ideas of others. Dr. Sheibenbogen works with EBV and is developing a peptide test that very well might help nail down the involvement of EBV reactivations in patients. This would be a very important realization, and she feels she might have something conclusive in six months. Dr. Bansal is another one of these focused and sympathetic newcomers, and it was great to talk with him. His recent study is here. In fact it was great to talk to a lot of these clinician/researchers - as this in itself speaks to the shared values emerging in the wider clinical/research world of ME/CFS.

Mella and Fluge did a split presentation, as they did last year.  They provided additional trial information that they asked to not be distributed, pending publication. All I can say is that this research is ongoing, and it now has the feeling of inevitability to it. I spoke to Dr. Mella about using a Fitbit pedometer instead of using patient assessment, which in my estimation is a total waste of time. He indicated that he used a movement device, the same one that Kogelnik uses, but that it was too expensive to outfit each patient with the device. I told him the Fitbit was $100 and he was astonished. I am not sure he believed me, but I hope he hooks up all his patients long-term and gets some objective information on their progress. These guys and gals are very smart, but they do not know everything.

At the conclusion of the conference day the moderator Ian Gibson observed that the audience remained riveted the entire day, right up to the end. He repeated this to me later in the hallway.

Invest in ME sells a modestly priced DVD of the conference. Get ahold of it and look at it yourself.

What are my conclusions at the end of the day? It looks to me like Invest in ME has the ME/CFS collaborative research presentation firmly established and ongoing. The OMI-MERIT initiative, the CFI, Simmaron Research and the ME/CFS Center at Mt. Sinai all have continuing and expanding research. Next year’s conference should present some important results.

What is most urgently needed is a “Treatments Now” conference. Some will say that there are no existing treatments, but I beg to differ. A conference on this subject would result in the same kind of compression that comes out of the Invest in ME conference. One might have to knock some heads, but something very good and solid would come out of this. I will write more on this later.

Equally urgent would be a conference on Severe ME. This has been a long neglected topic - and efforts should be made to reverse this, and give consideration to the patients at the very core of the illness, patients whose blood, saliva, feces and urine could have a huge impact on understanding this illness or set of illnesses.

Dr. William Weir has posted his comments on the conference here.

Mark Berry writes on the conference here.

7 comments:

  1. Lisa Petrison, Ph.D.June 4, 2013 at 4:15 PM

    >Mady Horning gave a fine talk, echoing the one she gave in Florida in January. That talk can be accessed here. She spoke of the terrain and genetic defects leading to ME/CFS - what variables contribute to getting ME/CFS.

    Does Hornig seem to be considering toxins as part of the "terrain" or as a variable that might contribute to someone getting CFS? Did anyone at the conference give any indication that they think it's in any way conceivable that toxins could be a cause or substantial contributor to the disease? Or are they still taking the position that the only two options for causality are "pathogen" or "mystery disease"?

    With regard to treatments: here is a new Facebook page intended for patients to share information on locations where they feel particularly well. This effect keeps coming up over and over again, and in many cases it's a much bigger effect than anything that's ever been reported even anecdotally as a result of either Ampligen or Rituximab. If indeed this is a real effect, I wonder what is causing it. It would be nice if the doctors/researchers you spoke to were to become interested in that as well.

    https://www.facebook.com/LocationsEffect

    Thanks much for an informative blog post, Chris.

    Lisa Petrison, Ph.D.

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  2. Very heartening to hear Dr Eric Schadt is also on board at OMI-MERIT. This illness is now attracting some very big brains (at last!)

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  3. Thank you Chris,
    It was a relief to read a review of Dr Gerada's talk that sounded genuine.

    Having attended previous conferences it didn't seem likely that patients would have just sat there and not asked any pertinent questions.

    At least someone would have brought up the awful videos that she was involved with.

    There is one in which she tells a CFS patient to exercise and claims that this is safe!

    If she wanted to learn how to treat a patient in a less dangerous and more beneficial way then she had decades before in which to learn.

    The NHS has protected her and all the other doctors in the UK who have done so much to harm PWME and PWCFS. It was grossly insensitive of Dr Gerada to lecture an audience of patients who don't get medical treatment for their disease on the problems that the NHS faces. They don't have an NHS now.

    Sounds like wilful ignorance on her part.

    If anyone missed the video they are here
    http://www.youtube.com/watch?v=KYQpFtl2xe8

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  4. Chris, I am a patient and was at the event and I'm more ambivalent about Dr Gerada. I am very glad indeed that she was invited, that she came, and that she was treated with appropriate professional respect. I also thought her talk was strange, but given the enormous importance of the NHS changes politically right now, her talk was relevant even if it could have been targeted better for her audience. I think her point that "GPs are generalists" is a very good one - we patients often blame our GP (PCP) for the lack of treatment, when the real problem is the almost complete lack of specialist centres. However I think she showed a stark lack of understanding of the damage being done every day by many GPs who encourage their ME patients to think they are suffering from mental health problems - it's very damaging. My inclination is to see Dr Gerada is a passionate GP who could be better-informed about the illness, but not one who is malicious in her views. I think it was also good for her to be there for the patients, for us to see her as a person, and to assess for ourselves where we agree and disagree with what she says. I think it's a shame she left after her talk and missed other speakers, but I gather she did take some time to talk to some of them. Although I did not like or agree with some things she said, I have a certain respect for her for coming, as being married to you-know-who this area is very personal for her, and she was at risk of verbal attacks.

    The levels of collaboration appearing around this illness are truly wonderful, and by acting together we as a community can achieve so much more. I support the UK collaborative, even though it includes White & Crawley, as I think working together provides more influence and credibility. I see there's a Science Media Centre guy plumbed into the UK collaborative, and it seems to me as and when decent biomedical research comes the SMC are more likely to cover it.

    Lisa, FWIW my illness is unaffected by molds, and location makes no difference - subgrouping is so important. Dr Hornig did mention the mycobiome, and seems to have an interest in environmental triggers, but I do not know to what degree that's implemented in the research.

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  5. Lisa Petrison, Ph.D.June 6, 2013 at 7:45 AM

    I don't want to suggest that I know for sure that all people with ME/CFS are hyperreactive to toxic mold, because I don't know that. What I do know is that every single sufferer who has made a systematic attempt to find out using the military protocols designed to help people get clear of these toxins has concluded that mycotoxins are driving force in their illness -- even when (as has been the case with a number of people) they believed very strongly in advance that they had no sensitivities to mold (or no sensitivities to anything) whatsoever.

    This is an important enough phenomenon that it needs to be researched. If, as I believe, exposure to toxic mold (as measured by the ERMI environmental test) indeed is a risk factor for CFS, then we need to know about it in order to help with prevention of this illness.

    Research to determine whether toxic mold is a risk factor would not be difficult or expensive. It just would require that a random group of confirmed ME/CFS patients who are still living in the homes where they got sick have the ERMI done. This test gives percentile ratings of how relatively problematic the environment is in terms of these toxins, using a genetic analysis of the molds present. If we found that (as has been my observation) people with this illness were especially likely to be living in particularly problematic homes, than this would be important to know since it would permit people to evacuate those environments before they got sick or in the early stages of their illness.

    (Of course, even if toxic mold exposures are a driving force in all cases of the illness, we would not expect 100% of people to be living in horrible environments since they might have become ill from their workplaces or from outdoor exposures. But a high enough percentage of people appear to be getting sick as a result of being poisoned by their homes that at least this would be a good start.)

    The test is less than $300 per person and has been widely verified as reliable. Probably I even can find someone who cares about this issue to fund a project like this. What we need is a physician specializing in ME/CFS (who has not been focused on mold illness in the past) to agree to participate. That way, the objection that "these are not CFS patients, they're mold patients" can be proactively addressed.

    My preference for this study would be the Open Medicine collaboration (which includes both Peterson and Kogelnik). They currently are looking to do a study on risk factors in ME/CFS but at present are not planning to include toxic mold. Perhaps if people demonstrate to them enough interest in this topic though, they will reconsider. I hope so.

    Thanks much for your comment, Ollie.

    Best,

    Lisa

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  6. It looks like Quantified Self is being discussed a lot in CFS/ME circles now. Personally I'm very interested in Beddit, which is like a sleep study at home. It costs only like $99 or $149 for the iPhone version, but sadly the non-iPhone one is something like $499, which means I won't be getting it. But I am considering an EEG/ECG electrode (starting at about $49), a hydration-measuring scales for my diabetes insipidus (also about $49) and a heartbeat/oxygen saturation measuring device (about $19).

    I agree that we'd need a Treatments Now conference. I'd be up to speaking.

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  7. ME cartoons published by InvestInME :

    http://www.investinme.org/IIME-Cartoons-2013-01.htm

    "A little humour from Invest in ME newsletter published today.
    These excellent cartoons have been created over time due to severe illness and they reflect the person's own experiences of being diagnosed with ME."

    Also on Facebook:
    https://m.facebook.com/permalink.php?id=284529028240814&story_fbid=679999605360419

    Please support Invest in ME in their endeavour to fund a Rituximab trial under the guidance of the world-renowned Professor Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine at University College London (UCL)

    http://www.investinme.org/IIME%20UK%20Rituximab%20Trial%20Home.htm

    ReplyDelete