“I have suffered with M.E. for the past 9 years, it is an absolutely miserable thing to have, sometimes I feel that I have no life at all and I feel that everything is pointless because there never seems to be and end to it! I ve tried to fight the illness but I ve had to learn that this is not the way. The only real thing that ever helps is to Fast for 24 hours which is horrible too beause I feel weak and hungry but strangely I began to feel more normal. The way I usually feel is a bit like trying to move through glue .. its just difficult to do the most simple chores!! I do try to pace myself by not doing too much but many people I know do not understand when I can only do only one thing a day i.e. go shopping for instance or maybe go for a walk instead. I really hope that a cure can be found and I can be made well again.. I just want my life back .”

“So I wonder what psychological or social problems nearly all the staff at the Royal Free Hospital had in the 1950s? Come on. Are you diagnosing these people with the same illness? sounds like you've invented something new.”

“I have a scientific background and I have studied the contents of the presentation made by Prof Kenny de Meirleir. His hypothesis is that high levels of hydrogen sulphate in the urine may possibly be diagnostic of the presence and or overgrowth of relatively certain common microbes living within the gut. This he then claims produces the symptoms of Myalgic Encephalomyelitis.

This is not a new idea; it is a new variant on the “leaky gut” hypothesis that has been around for some time and has been associated with the Candida overgrowth hypothesis of ME which produces the same kind of “leaky Gut” in which candida travels through the gut and invades the body through the gut walls. This hypothesis has been largely discredited although it still has its supporters. How can such organisms penetrate the gut wall and invade the body in the manner claimed, as this was the Achilles Heel of the previous Candida hypothesis?

Assuming it is possible then the person would be suffering from a case of infection by one of the micro organisms concerned, and not ME, since all the micro organisms cited by Prof. Kenny de Meirleir are already known to medicine and medical science, and this would be picked up by a battery of microbiological tests which would confirm the presence of a bacterium as being the cause of the infection suffered by the patient. Not all the organisms concerned are easy to treat and some can be resistant to antibiotics, but diagnosis and treatment are relatively strait forward. This leads to the academic scientific question as to whether certain levels of some of these microbes live in the gut anyway, and speculation as to what would lead them to cause an infection.

In order for a specific disease to be produced through the invasion of the body by a specific microbe, there must be an equation made between the microbe responsible and the disease. One cannot have the same disease produced by an unspecified number of unspecified microbes because this would simply be a general bacterial infection. It would not be ME.

In order for a diagnostic test to detect the presence of a single microbe a test must detect the microbes concerned in the presence of other microbes which may be harmless, or not the subject of the test, and therefore the test will not produce false positives results when applied to samples taken from patients. There is no indication that the proposed test will do this.

In order for a diagnostic test to detect the presence of a microbe it is necessary for the test to have a provable and reliable sensitivity to the organism it is intended to be a test for so that medics and researchers can have confidence that if the test says that there is nothing there, then that is indeed the case. This is to avoid the problem of false negatives. There is no information whatsoever from Prof. Kenny de Meirleir on this subject, so I can only assume that the proposed test does not meet the stringent standards of any national or international Health Board.

That in order for a diagnostic test to be accepted as the means of diagnosing a given disease it must be accurate, and it must be reliably accurate to a very high standard so that again medics and researchers can have confidence that the test really does do what it claims it can. Again, there is no information whatsoever from Prof. Kenny de Meirleir on this subject, so I can only assume that the proposed test does not meet the stringent standards of any national or international Health Board. This is presumably also why the test is not being marketed to doctors or to governments or Health Boards, but only to individuals.

The theory behind the test must be based on a unique aspect of the pathophysiology of the disease because only then can the equation between a given specific microbe and a given specific disease be made. In order to be in a position to make this equation the theory which underpins the use and application of any diagnostic test mu”

“i am so pleased they are actually recognising me as an illness , my son has suffered with me for 2 years now he has two young daughters who he never has the energy to play with , he was struck with this illness shortly after taking out a mortgage ,his partner was forced to take full time employment and my son has to take care of their daughters which is not easy for him , he has had to go through all sorts of tests to eliminate all other illnesses , and has only just been referred to the me clinic at frenchay , if a test was available to diagnose this illness treatment could have started two years ago”