Reports from London -Invest in ME Conference

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(http://www.cfids.org/cfidslink/2009/060302.asp) Reports from London

By Suzanne D. Vernon, PhD

_http://www.cfids.org/cfidslink/2009/060302.asp_

(http://www.cfids.org/cfidslink/2009/060302.asp)

 

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.

 

Marian Dix Lemle

 

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.

 

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:

_http://www.steungroep.nl/index.php/component/content/article/195

 

_ (http://www.steungroep.nl/index.php/component/content/article/195)

Commercial website about the urine test:

_http://www.proteabiopharma.com/page/diagnostics.php

 

_ (http://www.proteabiopharma.com/page/diagnostics.php) Marian Lemle’s

testimony before the CFS Advisory

Committee on October 28, 2008:

_http://www.cfids.org/advocacy/testimony-lemle-oct2008.pdf

 

_ (http://www.cfids.org/advocacy/testimony-lemle-oct2008.pdf) Statement

from Marian Lemle about May 28, 2009

Announcement:

_http://www.cfids.org/cfidslink/2009/060302a.pdf

 

_ (http://www.cfids.org/cfidslink/2009/060302a.pdf) Statement from the ME

Association:

_http://www.meassociation.org.uk/content/view/875/161/

 

 

 

_ (http://www.meassociation.org.uk/content/view/875/161/) ````

 

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