Reports from London
By Suzanne D. Vernon, PhD
Invest in ME Conference
The 4th Invest in ME International ME/CFS Conference was held on May 29th in Westminster, London. The one-day conference featured a series of lectures on treatment, care and research given by prominent speakers within the ME community. Last year’s conference addressed subgroups and ME/CFS treatments; this year organizers focused on the management and treatment of severe ME/CFS. Speakers representing the U.K., Europe and the U.S. were selected to give presentations.
Annette Whittemore of the Whittemore Peterson Institute in Nevada gave the opening keynote address. Professor Garth Nicolson from California spoke about mycoplasma and co-infections found in CFS and neurodegenerative and neurobehavioral diseases; Dr. Harald Nyland spoke of lessons learned about ME from a giardia epidemic in Norway. Dr. Jonathan Kerr of London spoke on ME/CFS subgroups and Dr. Barbara Baumgarten of Oslo gave a presentation on services for correct diagnosis and management of ME. The afternoon featured a presentation by Dr. Kenny De Meirleir of Brussels on his observations and data on severely ill ME patients (see more details below). Dr. Dan Peterson, also of the Whittemore Peterson Institute, spoke about treatment regimens for the most severe CFS cases and London’s Professor Basant Puri gave a presentation on neuroimaging of ME patients. Dr. John Chia from California presented his work on diagnosis and treatment of chronic enterovirus infection associated with ME/CFS and the Whittemore Peterson Institute’s Dr. Judy Mikovits gave a presentation on research and diagnosis of difficult and complex medical cases of ME.
Dr. Kenny De Meirleir
PROTEA Biopharma Press Conference
On May 28, the day before the conference, De Meirleir and his company, PROTEA Biopharma, hosted a press conference for credentialed media at the Ritz Hotel in London. The subject was described as “the true nature of ME,” based on De Meirleir’s study of extremely disabled ME patients in Norway. He first presented a short film about severely ill patients and then described the function of a molecule known as lipopolysaccharide (LPS) in gut permeability and the abnormally high counts of three families of bacteria found in a CFS study performed by Dr. Henry Butt of University of Melbourne. LPS is a part of the cell wall of gram negative bacteria and is a well-known trigger of inflammation. They found high levels of LPS in the blood of bedridden ME patients and, based on some of their other work, hypothesized that this extra LPS may be coming from “leaky” intestines arising from the inflammation. Intestines naturally contain a variety of bacterium that help with digestion and metabolism, but these must be contained within the gut.
When the gut becomes leaky, bacteria and some of their by-products get into the rest of the body. One substance produced by bacteria is hydrogen sulfide (H2S) – the chemical known to smell like rotten eggs. Cells produce H2S as an important chemical to transmit signals, but too much H2S can be dangerous and have possible toxic consequences. A connection between H2S and CFS was first published by Marian Dix Lemle, an independent researcher in Washington, D.C., in August 2008 (e-published ahead of print) in the Journal of Medical Hypotheses.
Marian Dix Lemle
De Meirleir announced that PROTEA Biopharma has devised the first “bedside test” for H2S in ME and that it would be commercially available for 13₤ (approximately $25 US). According to De Meirleir, urine from bedridden ME patients turned dark blue quickly when mixed with proprietary chemicals, compared to a slower color-change reaction in less ill patients, or no color change at all in controls. In addition, De Meirleir reported finding prions in 20% of the severely ill ME patients using a special luminescence technique and termed this “aberrant prion disease,” or APD (patent pending). De Meirleir reported that 10% of APD patients have very high prion counts in their saliva and can therefore transmit it to others. He also tested healthy blood donors and identified prions in the blood of one individual. He stated that in light of the nature of the discoveries and consequences for public health, he felt obliged to hold a press conference prior to publication of the results in a medical journal.
Since the press conference announcement, many scientists and observers have taken issue with the conclusions drawn by De Meirleir and his team based on little data and no publications. Being bedridden has profound effects on muscle, bone, heart size, blood volume and possibly every aspect of living including possibly increasing leakiness of the gut with resulting increase release of LPS into the blood. While LPS is a powerful toxin and may result in increased H2S, it will be important to determine the role of H2S in CFS. It is not clear from the De Meirleir/PROTEA Biopharma press release if prions were found in the same severely ill patients with high H2S levels. Prions can be detected in body fluids, but usually occur at very low levels. This data and report, when published, could be important to the field of transmissible spongiform encephalopathies.
Lemle, the author of the original H2S hypothesis, offered this statement after attending the London press conference and Invest in ME presentations. “Although many doctors have been aware of my theory, the fact is that Dr. De Meirleir pursued the idea. I am gratified that Dr. De Meirleir’s findings appear to have confirmed my hypothesis. However, serious questions about the reliability of his data and his methodology were raised by the participants at the Invest in ME Research Conference in London on May 29, 2009. It now is important to follow standard verification procedures that are designed to protect patients from spending money on tests and treatments whose reliability, effectiveness and safety have not been proven. It is also important that other investigators confirm his findings (e.g., abnormally high levels of Streptococcus, Enterococcus, Prevotella, lipopolysaccharides and aberrant proteins) in other groups of CFS patients.
Slides of Dr. De Meirleir’s presentation:
Commercial website about the urine test:
Marian Lemle’s testimony before the CFS Advisory Committee on October 28, 2008:
Statement from Marian Lemle about May 28, 2009 Announcement: http://www.cfids.org/cfidslink/2009/060302a.pdf
Statement from the ME Association:
CFIDSLink is offered free-of-charge to anyone who requests it. Please help us continue being able to provide this service. Donate now.