Tuesday, 1 June 2010

IiME Conference Report - Andrea Pring

Reposted with permission. Andrea Pring, of Dancing With The Sandman, attended the Invest in ME Conference, and kindly gave permission to repost her report.

I struggle (a lot) with the science surrounding our illness, so I'm simply reposting without comments. Just want to draw one quote out from Andrea's report, for you to see before you get to the good stuff:

On a sadder note, not one member of the GMC or MRC attended and you may not be surprised to hear that the Chief Medical Officer turned down the invitation….yet again. One wonders how much longer these people will be able to bury their heads in the sand.

Unfortunately, the answer would seem to be 'as long as it remains profitable to do so' :(

Permission to Repost


Venue: 1 Birdcage Walk, Westminster, London
Date: Monday 24th May, 2010

Chair: Professor Malcolm Hooper

Speakers: Professor Leonard Jason PhD; Professor Nora Chapman PhD; Dr. John Chia MD; Dr. Paul Cheney MD, PhD; Dr. Jonathon Kerr MD, PhD; Dr. Nancy Klimas MD, Professor Brigitte Huber PhD and Dr. Judy Mikovits PhD.

It was beautiful and unseasonably warm in Westminster for the 5th Invest in ME International ME/CFS Conference. We travelled by car from Devon leaving at 4am and managed to get there before the sun truly bared its teeth.

This was the first ME conference I have attended in the 5 years I have been ill. When I heard that Dr. Judy Mikovits would be speaking, I was determined that however ill I felt, I would still make the journey to see her presentation. The analogy of a pilgrim making his way to Mecca isn’t too far off for me.

The event was held in a beautiful Edwardian building on the site of the Institution of Mechanical Engineers in the historical Birdcage Walk, south of St. James’ Park. The street got its name from the Royal Menagerie and Aviary which were situated there in the reign of King James l. Famous visitors include Samuel Pepys and John Evelyn who both mention the Aviary in their personal diaries.

We arrived a little late and as the lecture had already begun we had to contend with sitting on the steps that ran alongside the seating area. This, as you can imagine, was not the best thing for me, having been couch-bound for months, but I managed to get through it, albeit with a lot of fidgeting and clock watching. Needless to say, my note-taking during this part of the conference was not the best. Hopefully you will still find something useful from my scribbles.

Every year, Invest in ME invites the most eminent research and medical scientists to speak at the conference. The room buzzed with only the sort of energy felt when the most esteemed are gathered together. The excitement was almost too much for me – I’m sure you can all attest to the effects of adrenaline, so it will be of no surprise (at least not to the ME sufferers) to hear that I broke out in a sweat and promptly started shaking. However, despite the adrenaline rushes and resulting weakness, I have to say that I was truly honoured to be in the same room as all these great minds.

On a sadder note, not one member of the GMC or MRC attended and you may not be surprised to hear that the Chief Medical Officer turned down the invitation….yet again. One wonders how much longer these people will be able to bury their heads in the sand. They are quickly becoming the laughing stock of the world.

The lecture hall was full to the brim with patients, patient advocates, physicians, international scientists, international doctors, news reporters and even the editor of the BMJ; which is a real turn-up for the books. I am eager to read what she has to say about the conference. I will not be in the least surprised if she mentions the negative XMRV study. I think we all know the leanings of the BMJ. Perhaps she will prove me wrong. One can only hope.

The Chair for the day was the remarkable Professor Malcolm Hooper, Emeritus Professor of Medicinal Chemistry, Sunderland, UK. Well known for his political writings and his staunch, 'British Bulldog' support of patients. In my eyes he is a true hero because he stands in the face of opposition and will not back down, regardless of the outcome.

Professor Hooper’s commentary added a touch of the comedic to the proceedings. Perhaps he doesn’t intend this, or it is just me who sees the funny side of him, nonetheless his humour lightens the load when difficult subjects are touched upon. That is not to say that he isn't serious about his work, for no one shows such dogged determination and complete understanding of the political landscape surrounding ME than he. I suppose you can tell that I am a big fan of his.

The rest of this report will detail each of the speakers together with the key scientific facts from their presentations.

First to speak was Professor Leonard Jason PhD Prof. of Clin. And Community Psychology at the Center of Community Research, DePaul University, Chicago, USA.

His talk was entitled HOW CASE DEFINITIONS CAN STIGMATIZE: IMPLICATIONS FOR EPIDEMIOLOGY, AETIOLOGY AND PATHOPHYSIOLOGY. From the title, I think it is clear where Professor Jason was headed. He presented his work with precision and great clarity. His presentation mirrored his own desire to find a clear definition for ME/CFS.

Professor Jason believes that the future of ME/CFS depends on reliable and valid ways of classification, particularly with regard research activity. This in turn will allow investigators to better understand etiology, pathophysiology, and treatment approaches for CFS.

“The poor understanding of the pathophysiology of ME/CFS may be due to case definitions lacking reliability and validity, and improving the case definition may prevent complications in identifying biological markers in this illness. “ (Journal of IiME, Volume 4, Issue 1)

Next up was Professor Nora Chapman PhD, Associate Professor Department of Pathology and Microbiology, University of Nebraska Medical Center


Professor Chapman’s presentation was highly academic and perhaps not quite suitable for the type of audience present. I have a science degree and struggled with the details, although the concept was clear. Chapman believes that enteroviruses are normally cleared by the immune response, however, work carried out on inflammatory heart disease has demonstrated the persistence of enteroviral RNA in hearts even after non-detection by cytopathic assays. Persistent infection by a group of enteroviruses, the coxsackie B viruses (CVBs), normally occurs in tissues with a low level of cell division. This tenacious infection is down to the continued but low level infection by defective CVBs.

In other words, Professor Chapman and her team have found the existence of defective enteroviruses in heart muscle that escape detection by normal assays and which aren’t cleared by normal immune response. “As enteroviruses infect a number of tissues, muscular or neurologic effects of this infection may be associated with some of the symptoms of ME/CFS but confirmation of this type of persistence requires sensitive assays.” (Prof. Chapman, Invest in ME, May 2010)

Professor Chapman was followed by Dr. John Chia MD, Infectious Disease Specialist practicing in Torrance, California, USA.


“By analyzing samples of stomach tissue from 165 patients with CFS, Dr. Chia’s team discovered that 82% of these individuals had high levels of enteroviruses in their digestive systems. Dr. Chia’s research may result in the development of antiviral drugs to treat the debilitating symptoms of ME/CFS.” (Journal of IiME, Volume 4, Issue 1)

Dr. Chia spoke about the persistence of enteroviruses in ME/CFS. He spoke about the importance of getting a complete history when diagnosing the patient. Particular care should be given in finding out: what sort of travelling they had done, what kind of water they had been exposed to, past infections particularly of the respiratory and gastrointestinal kind, if they had suffered any flu-like episodes or taken steroids. He spoke of the need to look at surgery and vaccination history and exposure to molds, tick bites and sick people.

Dr. Chia spoke in great length about the use of a Chinese herb called Oxymatrine which he has developed into his own brand called Equilibrant. According to Dr. Chia, over half of his patients showed a positive response (56%: 75/134 people) to treatment. Which, all things being equal, can be considered a reasonably good success rate.

Dr. Chia’s presentation was full of colourful and informative slides and he broke the lecture up nicely by involving the audience with quick surveys. Although I found it interesting, particularly the treatment protocol, I am not convinced that enteroviruses are the cause of M.E. I personally believe they play a part in the condition but are not the root cause.

After a much needed break, we were joined by Dr. Paul Cheney MD, PhD,
Medical Director of the Cheney Clinic in Asheville, North Carolina, USA.


I was incredibly impressed with Dr. Cheney. It is apparent, from the way he presents, that he is an exacting, methodical researcher. As I have long believed I have a heart condition, the information he presented was perhaps the most interesting to me. It was a shame that he was not able to finish the presentation, due to the abominable time constraints. However, there is much information online regarding his research and I suggest that you take a look at what he has to say. I think you will be very surprised by what you read. For me, it makes perfect sense as it explains the pattern of my symptoms perfectly.

Dr. Cheney believes that we are suffering with oxygen toxicity and diastolic dysfunction, in other words Diastolic Cardiomyopathy, which is a relatively new condition. The problem is not that our ventricle functions poorly as is the case with Systolic Cardiomyopathy, but that it does not fill properly; it is a problem of cardiac output. Thus there is not enough blood to be pumped around the body, which leads to the symptoms of orthostatic intolerance amongst others. As this has only recently started showing up in the medical literature many doctors are unfamiliar with it. However, research is moving at a decent pace so it won’t be long before all cardiologists are able to diagnose and treat it.

According to Cheney, there are two types of diastolic dysfunction and the majority, if not all, of ME patients have Type I. Those who do go on to develop Type II have a 1 in 4 chance of surviving beyond 5 years of diagnosis.

So, how does this fit into the pattern of our symptoms? Well, Dr. Cheney explains that there are four distinct phases to our illness:
1) Onset
2) Triad (energy (push-crash dynamic), brain and pain)
3) Dynamic dysfunction
4) DNA phenotype adaptation

When we first fall ill our symptoms are often seen as much worse, yet our activity levels are normal. As the illness progresses we learn to cope with our symptoms and manage them to the detriment of functionality.

Dr. Cheney believes that many M.E. sufferers are so sick that they should be in a heart transplant ward. In a strange twist of circumstance, no one is more qualified to speak about this than Cheney, as he had a heart transplant himself.

Finally, Dr. Cheney tantalised us with the results from his XMRV work. He found that
38 of 47 (81%) consecutive patients in his practice were XMRV positive by amplified culture technique. He also noted that a higher incidence of positives were found within family groups, indicating that the virus is easily transmitted.

After lunch it was the turn of Dr. Jonathon Kerr MD, PhD, “Sir Joseph Hotung Senior Lecturer in Inflammation” at St. George’s University of London and Consultant in Microbiology in the Dept. of Cellular and Molecular Medicine.


After the wonderful lecture from Dr. Cheney, I was incredibly disappointed with Dr. Kerr’s presentation. Not only was he barely audible but his slides were appalling; ill-defined, faint, with the smallest of graphs and diagrams that it was quite impossible to read them. What a shame, as his work is immensely important. As, Nancy Klimas continually reminded us.

“We have recently reported gene expression changes in patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) and the utility of gene expression data to identify subtypes of CFS/ME with distinct clinical phenotypes (Kerr JR et al. J Infect Dis 2009;197:1171-84). Due to the difficulties in using a comparative gene expression method as an aid to CFS/ME disease and subtype-specific diagnosis, we attempted to achieve such a method based on single nucleotide polymorphisms (SNP) alleles.

To identify SNP allele associations with CFS/ME and CFS/ME subtypes, we tested genomic DNA of CFS/ME patients (n-108), endogenous depression patients (n=17_ and normal blood donors (n-68) for 454-504 human SNP alleles based within 88 CFS-associated human genes using the SNP Genotyping Golden Gate Assay (Illumina, San Diego, CA, USA). 359 Ancestry informative markers (AIM) were also examined.” (Journal of IiME, Volume 4, Issue 1)

Dr. Kerr believes we desperately need a means to differentiate subtypes. He says that SNPs (single nucleotide polymorphisms) alleles are just the ticket and will work as a clear biomarker. Dr. Kerr states that there are 21 SNPs significantly associated with CFS when compared to depression and normal controls.

His study “provides evidence that human SNPs located within CFS/ME associated genes are associated with particular gene expression subtypes of CFS/ME." (Journal of IiME, Volume 4, Issue 1) However more work needs to be carried out to develop it into a clinically useful aid to diagnosis.

Next up was the exuberant and addictively enthusiastic, Dr. Nancy Klimas MD
Professor of Medicine, Psychology, Microbiology and Immunology at the University of Miami School of Medicine, USA who states that we already have a biomarker! Tell that to all the government agencies in the world.

According to Klimas “The search for biomarkers in ME has become increasingly urgent, both in their potential role in diagnostics and in the design of clinical trials. Biomarkers can be used to define subgroups of patients appropriate for specific interventions such as immunologic abnormalities suitable immunomodulatory trials.” (Journal of IiME, Volume 4, Issue 1)

Dr. Klimas states that NK function is a good indicator of severity and is useful in defining population, but methodological issues limit its widespread use.

Dr. Klimas allowed us a glimpse into the findings from her newest paper which was published in PLoS One the day after the conference.

Professor Brigitte Huber PhD, Professor of Pathology at Tufts University, Boston, USA, followed Dr. Klimas and caused quite a stir.


Professor Huber began by explaining her hypothesis on the retrovirus HERV-K18 (Human Endogenous Retrovirus). Huber believes that EBV-infection activates transcription of the env gene of HERV-K18. “This provirus is normally silent, but when induced it encodes a superantigen (Sag), which is a class of proteins that is capable of deregulating the immune system.” (Journal of IiME, Volume 4, Issue 1)

Preliminary studies found that HERV-K18 mRNA levels were higher in B cells from CFS patients in comparison to those of healthy controls.

Huber then moved on to discuss her latest work on XMRV. I looked at my husband and smiled; the recent findings in Germany still fresh in my mind. Show me the money. Now we can get take this XMRV baby to the bank. Professor Huber went through the study in a very autocratic and business-like manner, stating that the PCR she used was the best assay for the job, being highly sensitive. Then we were told that she used a psychologist to recruit patients. Wait. Stop right there! Now back up. Did she just say she used a psychologist to recruit CFS patients? I really began to sweat when she failed to specify selection criteria. I knew what was coming but it still hit me like a ton of bricks…ALL SAMPLES WERE NEGATIVE FOR XMRV INTEGRASE. You could cut the atmosphere with a knife. To add insult to injury she then said that any positives she found were down to contamination, implying, without actually saying, that the WPI were responsible. As she walked off the stage she muttered that she was sorry.

Dr. Judy Mikovits PhD, Research Director at the Whittemore Peterson Institute for Neuro-Immune Disorders, Reno, Nevada, USA, followed this nefarious attack with the most wonderful display of humility and strength that I have ever witnessed. I would have been shaking with anger but Dr. Mikovits remained calm and composed and promptly knocked Professor Huber right off her officious high horse. She explained clearly, for the millionth time, how the study was carried out and why PCR wasn’t enough on its own. She also explained why contamination was not and could not have been a factor, and in my opinion, should now be put to rest. At the end she thanked everyone for their birthday greetings. It was only at this point that her voice shook with emotion, as she revealed to the audience that it was the best thank you she could have been given.

Dr. Mikovits received a standing ovation. A spontaneous show of affection, so very un-British, but wholeheartedly deserved.

Andrea Pring, May 2010

1 comment:

  1. This is a great review of this conference. Thanks for writing it.