Problems with the "ME test"

BY: Ciaran Farrell, Myalgic Encephalomyelitis sufferer

Medical tests for a specific disease need to be an accurate and reproducible means of establishing the unique pathophysiology of the disease concerned

I have a scientific background and I have studied the contents of the presentation made by Professor 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.

The current hypothesis follows much the same lines, that the micro organisms that ought to be contained within the gut are somehow able to penetrate the walls of the gut and end up just about everywhere in the body including the brain.

There are a number of problems and issues here which can be summarised but are not limited to :-
1] 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?

2] Assuming that it is possible for these micro organisms to invade the body in the way Prof. Kenny de Meirleir hypothesises, then the person would be suffering from a very nasty case of infection by one of the micro organism 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 not that 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.

3] That in order for a given 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 certain specified and also by other un-named and or un-specified microbes because this would
simply be termed a general bacterial infection. It would not be ME.

4] That in order for a diagnostic test to detect the presence of a given single microbe or family of microbes a given 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.

5] That in order for a diagnostic test to detect the presence of a given microbe or family of microbes it is necessary for the test to have a given 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. This is presumably why the test is not being
marketed to doctors or to governments or Health Boards, but only to individuals.

6] That in order that 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.

Lastly but by no means least, 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 must account
directly for the disease process itself and not be a consequence or artefact of that disease process that could be produced in other ways.

I consider that Prof. Kenny de Meirleir’'s hypothesis and Hydrogen Sulphide diagnostic test based upon it fails this test on the grounds listed above and for the simple reason that he has not accounted for the well known fact that patients with ME/CFS/CFIDS are known to have compromised immune systems.
This would mean that as with HIV/AIDS patients who also have compromised immune systems that there is very considerable likelihood that in ME/CFS/CFIDS patients the presence of the microbes that Prof. Kenny de Meirleir observes and the numbers in which he observes them are simply due to the secondary consequences of having ME/CFS/CFIDS as a result of opportunistic infections by microbes that would largely be kept at bay by the body’'s immune system in a healthy person.

I note that Prof. Kenny de Meirleir has been a controversial figure when he served as a Board Member of the American Association for Chronic Fatigue Syndrome, and editor of The Journal of Chronic Fatigue Syndrome put out by The Haworth Medical Press and that the Board of The National CFIDS Foundation, Inc. (NCF), in America, called for his resignation as the result
of his previous research activities.

I also note that Prof. Kenny de Meirleir’s recent work on this matter is not published in a Peer Reviewed Journal, and that he does not appear to have any plans to publish his work in such a journal, possibly because his work on this matter may not reach the standards required by such journals.

I further note that Prof. Kenny de Meirleir is one of the Editorial Panel of the proposed new Journal of Fatigue where presumably he would be able to publish this work as presumably this journal does not have the same status and standing as a regular Peer Reviewed journal, and he would be standing in favourable judgement over his own work.

In view of the entirety of the above, my advice would be to think long and hard before committing £13 or any other sum of money to buy the home testing kit proposed by Prof. Kenny de Meirleir or on whether to have the test performed in any other way, and I would be very wary indeed of any treatment options that may be advanced by Prof. Kenny de Meirleir on the basis of a positive test result, or the consequences of a negative test result.

Ciaran Farrell
Myalgic Encephalomyelitis sufferer

Simple £13 test 'could be used to diagnose patients with ME'

A simple £13 test could be used to diagnose patients with Myalgic encephalopathy (ME), scientists believe, and potentially offer hopes of treatment for many.

The researchers believe that the condition, thought to affect around 250,000 people in Britain, is triggered by an overabundance of certain bacteria in the gut and a build-up of toxins in the body.

Myalgic encephalopathy (ME), also known as Chronic Fatigue Syndrome, can leave sufferers bedridden for years.

Twice as common in women than men, it typically affects patients between the ages of 20 and 40 and common symptoms include severe fatigue, muscle pain, forgetfulness or trouble concentrating and difficulty sleeping.

Once dismissed as "yuppie flu" it has since been recognised as a disease by the Department of Health.

However, confusion has surrounded the cause of the condition, with some doctors believing its roots are viral or psychological.

Studies in Australia have shown that between 60 and 70 per cent of diagnosed patients suffer from large numbers of bacteria called enterococci and streptococchi in their gut.

Prof Kenny De Meirleir, from Vrije University, in Brussels, who created the new test, said that these bacteria ...

Launching ...

BBC journalist Frank Gardner on life in a wheelchair

Frank Gardner, the BBC journalist who has spinal-cord injuries after being shot in Saudia Arabia, swaps tales of life in a wheelchair with our writer, who has the same condition.

In 2005, my wife Penny watched a news item about the BBC security correspondent Frank Gardner, who had suffered a spinal-cord injury after being shot by al-Qaeda gunmen in Saudi Arabia. He was pictured standing in callipers and taking his first tentative steps.

Penny was in the waiting area of the Royal London Hospital; I was in the operating theatre after falling from a tree in which I was working. I had broken my spine, leaving me paraplegic.

HARRY Potter ...

'Thalidomiders': still fighting for justice

Fifty years after the Thalidomide scandal, its victims' compensation funds are dwindling. Jeremy Laurance meets Nick Dobrik, whose extraordinary campaign aims to give them dignity and independence in old age.

Medically unexplained symptoms--GPs' attitudes towards their cause and management.

Reid S, Whooley D, Crayford T, Hotopf M.

Academic Department of Psychological Medicine, Guy's King's and St Thomas' School of Medicine and Institute of Psychiatry, London SE5 8AZ, UK.

"BACKGROUND: Medically unexplained physical symptoms present one of the most common problems in modern medical practice but often prove difficult to manage. The central position of the GP in the care of patients with medically unexplained symptoms has been emphasized repeatedly, but little is known about the attitudes of GPs to this role.

Understanding how GPs view these patients may inform the development of effective strategies for management.

OBJECTIVE: Our aim was to survey the attitudes of UK GPs towards medically unexplained symptoms (MUS) and somatization.

METHODS: A random sample of 400 GPs in the South Thames (West) region were surveyed using a postal questionnaire. Respondents' attitudes toward the cause and management of MUS were recorded.

RESULTS: A total of 284 completed questionnaires were returned (22 returned incomplete), giving an adjusted response rate of 75%. Although it was broadly felt that patients with MUS are difficult to manage, most GPs felt that patients with MUS should be managed in primary care.

Providing reassurance, counselling and acting as a 'gatekeeper' to prevent inappropriate investigations were considered important roles for GP management.

A majority felt that patients with MUS have personality problems or psychiatric illness. Fewer than half of the respondents felt that there are effective treatments available for somatization.

CONCLUSION: GPs consider the management of patients with MUS to be an important part of their workload, but there is a perception that effective management strategies are lacking. Psychiatrists need to offer greater support and training for GPs in this area of health care."

NO need for silly CBT ...

Ernie Els: I want to find the causes of autism

From The Times

To the outside world he seems to have it all. He is one of the world’s great golfers, has a multimillionaire’s lifestyle, lives with his young family in beautiful houses in England, South Africa and the United States, and travels the world in his private jet.

But one day, two years ago, the world fell in on Ernie Els — or so he thought at the time. The South African was told by doctors that his son, Ben, who was 5 at the time, was autistic. And life for Els and his wife Liezl was about to change for ever.

Yet after a period of deep reflection, and not a little self-pity, Els is devoting much of his energy into promoting research and raising public awareness of the condition. “It’s like an epidemic,” Els says. “It’s a complete mystery.”

Last week at Wentworth Golf Club in Surrey, where he was competing in the BMW PGA Championship, Els, 39, talked at length about Ben’s condition.

As the winner of three major championships, including the Open in 2002, he knows that he is lucky to be able to fund intensive treatment and care for his son — in fact he has moved his family to America, where there are private schools for autistic children — but he is also determined to help others less fortunate than himself.

Carpark ...

The NICE Clinical Guideline: convincing evidence?

"For the Judicial Review of the NICE Guideline on CFS/ME on the 11th and 12th of February 2009, at the High Court in London, Dr Neil Abbot provided an Expert Witness statement on the evidence base underpinning the main ‘treatment’ recommendations .

In this article, he summarises his conclusions, mainly with reference to cognitive behavioural therapy (CBT), though many points also apply to graded exercise therapy (GET)."

CBT: Civic Bread pitT

Missed Diagnoses Myalgic Encephalomyelitis & Chronic Fatigue Syndrome

"Where M.E. and CFS overlap, they undoubtedly represent the same illness, however, due to the considerable definitional and conceptual differences, CFS and M.E. should not be considered the same illness."
-Dr. Byron Hyde-

Dr. Byron Hyde, founder of the Nightingale Research Foundation, Ottawa, Canada, has written some of the most insightful articles on the clear distinctions between historically described M.E. and the current CFS definitions. He has also been vocal in criticizing the methods, creation of, and flaws in the CDC CFS definitions (see sidebar).

"Thirty years ago when a patient presented to a hospital clinic with unexplained fatigue, any medical school physician would have told the students to search for an occult malignancy, cardiac or other organ disease or chronic infection. The concept that there is an entity called chronic fatigue syndrome has totally altered that essential medical guideline.

Patients are now being diagnosed with CFS as though it were a disease. It is not.

It is a patchwork of symptoms that could mean anything.

The original concepts of searching for occult disease are relevant to patients today with CFS, ME and other fatiguing illnesses.

Furthermore, because you do not find pathology does not mean there is none."

Byron Hyde MD

Missed Diagnoses Myalgic Encephalomyelitis & Chronic Fatigue Syndrome
With a Forward by Prof. Malcolm Hooper

Also available at Amazon.com; © 2009 Byron Hyde MD

CBT for ME: Plane crazy ...

CBT in 1782 ...