Saturday, May 30, 2009

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

Friday, May 29, 2009

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 ...

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.

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."

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.

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)."

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

Postnatal psychosis: 'I wanted to hurt my baby daughter'

It can plunge new mothers into despair, paranoia and terrifying delusions. Rachel Day describes how postnatal psychosis nearly tore her family apart

It's spring 2007. I'm walking towards the ocean near my home in Bournemouth. That's where my babies are and I want to join them there.

I want to stop and think about it but there isn't time – I know they're coming and I have to act now. The water's icy, but the shock makes me feel alive.

I can hear my Dad calling me and I run further into the water. Then my mum's there, she's shouting and I think she's going to hit me but she puts her arms around me.

We're both sobbing, but nothing needs to be said. I say, "Mum, I need my babies," and she says, "your babies are in the car."

Who benefits from 'CFS' and 'ME/CFS'?

'Copyright © by Jodi Bassett and co-written/edited by Lesley Ben, January 2009 on www.ahummingbirdsguide.com
This version updates March 2009

For whose benefit was ‘Chronic Fatigue Syndrome’ created, and for whose benefit is it so heavily promoted despite its utter lack of scientific credibility? Who benefits from the artificial ‘CFS’ construct?

Who benefits from Myalgic Encephalomyelitis and ‘CFS’ being mixed together through unscientific concepts such as ‘CFS/ME’ and ‘ME/CFS’ and Myalgic ‘Encephalopathy’? Who benefits from the facts of M.E. remaining ignored, obscured and hidden in plain sight?

The short and simple answer to this question is: medical insurance companies.

The problem is not a lack of scientific evidence supporting M.E., but that the mountain of evidence which exists is continually ignored by those in positions of power who are abusing that power to further their own vested interests, helped immeasurably by the creation of 'CFS.'

For 20 years this massive scientific fraud has continued almost unchallenged by the world’s media, human rights groups and governments. It is a worldwide disgrace. The bogus and financially motivated disease category of ‘CFS’ must be abandoned.'

'Milestone' celebrated as ME document is sent to GPs

Published Date: 18 May 2009
By Adam Morris

FOR years it has been dismissed as "yuppie flu", fuelling a perception that it has received little attention from doctors.

But campaigners for recognition of ME as a serious illness both in the medical world and among the general public are celebrating what they are branding a "milestone" move.

Following pressure from an NHS Lothian study, the Scottish Government has .....

Honda Insight 1.3 IMA SE Hybrid


'Much has been written about the Insight, Honda’s new low-priced hybrid. We’ve been told how much carbon dioxide it produces, how its dashboard encourages frugal driving by glowing green when you’re easy on the throttle and how it is the dawn of all things. The beginning of days.

So far, though, you have not been told what it’s like as a car; as a tool for moving you, your friends and your things from place to place.

So here goes. It’s terrible. Biblically terrible. Possibly the worst new car money can buy. It’s the first car I’ve ever considered crashing into a tree, on purpose, so I didn’t have to drive it any more.......'

Subjective quality of life in patients with chronic fatigue syndrome ...

Rakib A, White PD, Pinching AJ, Hedge B, Newbery N, Fakhoury WK, Priebe S.

Queen Mary's School of Medicine and Dentistry, Newham Centre for Mental Health, London, UK.

"The aim of this study was to (1) assess Subjective Quality of Life (SQOL) of patients with Chronic Fatigue Syndrome (CFS) using a generic concept and to compare the findings with those in groups with mental disorders and healthy subjects, and (2) investigate whether and, if so, to what extent socio-demographic and clinical variables predict SQOL in CFS patients.

Seventy-three patients diagnosed with CFS were randomly selected and interviewed from two specialised clinics.

CFS was diagnosed using the Oxford Criteria.

SQOL was assessed on the Manchester Short Assessment of Quality of Life (MANSA) and Health-Related Quality of Life (HRQOL) on the Medical Outcome Study Short-Form 36 (MOS) SF-36. A battery of mood and symptom questionnaires, including the Symptom Checklist Questionnaire (SCL-90-R), was administered to assess various aspects of symptomatology as potential predictor variables. Multiple regression analyses were conducted to identify predictors of SQOL. Overall, SQOL was low in CFS patients and less favourable than in groups with mental disorders and healthy subjects. Satisfaction was particularly low with life as a whole, leisure activities and financial situation.

Whilst SQOL was only moderately correlated with HRQOL, the SCL-90-R score, especially SCL-90-R Depression scale score, was the best predictor of SQOL explaining 35% of the variance. HRQOL and generic SQOL appear distinct despite some overlap.

The findings underline that SQOL is significantly disrupted in CFS patients.

Depressive symptoms are statistically the strongest 'predictor' of SQOL, although the direction of the relationship is not established. These data suggest that treatment of depression associated with CFS, regardless of causation, could help to improve SQOL in CFS patients."


A shame though that ONLY patients with Chronic Fatigue were selected using the Oxford Criteria i.e. Fatigue only..


SO this is about Chronic Fatigue, NOT about Chronic Fatigue Syndrome, let alone ME;

WAKEY WAKEY guys .....

Life's too short not to get on with your doctor


'A good GP is a vital asset but one that rarely attracts the investment it deserves. We are very picky about the things that we pay for — for instance, we expect the best from our solicitor and local restaurants — but are overly tolerant of “free” public services, often going back to the same GP no matter what care he or she offers .......'

The Politics Show (May 10) on You Tube

Samantha Brown, a student with ME, took her struggle to obtain disability benefit to Parliament recently – with the results being broadcast on BBC1's The Politics Show on Sunday, 10 May 2009. Read more...

Carol was told she had fibromyalgia but ..



"Carol Cavallotti watched her body progressively crumble over a two-year period before finding out the fibromyalgia she was told she had was actually something far more serious - multiple myeloma.

As bad as that was, when time came to address the problem, she had one bit of good luck - her sister ........"

Can people with ME be mentally ill?

"Imagine this.

You are a doctor. You have a patient who has a delusional belief that the only way he can cure an illness from which he suffers is by drinking huge quantities of water. Quantities so huge that he is endangering his own life. It may sound implausible but water intoxication can kill you. Remember Barbara Nash, the quack nutritionist, who nearly killed a patient with the Amazing Hydration Diet?

Your patient refuses to stop drinking water so you arrange an urgent compulsory psychiatric admission so that he can be looked after in a place of safety whilst his delusion is treated. Few would disagree with that course of action. Sadly, amongst the few who do disagree, are the militant wing of the ME brigade. For this is a real case.

Writing under the pseudonym of Dr Speedy, a doctor who is himself currently bedridden with ME, highlights the case of Brian Nicholson who is currently detained on a mental health ward with precisely this problem. A short digression to say that, whatever your views on ME may be, “Dr Speedy” writes an excellent and at times very funny blog about his own experiences. Well worth a read.

But back to Brian Nicholson. Dr Speedy says:
Though of no danger to society Brian has now joined the ranks of those patients whose human rights are flouted and abused. Brian is now imprisoned in a secure psychiatric unit because he has ME. The psychiatrists treating him consider this to be "an abnormal illness belief".

Dr Speedy

Dr Speedy has let himself get carried away. Brian Nicholson has not been sectioned because he has ME. He has been sectioned because, in a delusional state, he is behaving in a way in which he is likely to kill himself. He is a danger to himself. He is drinking vast quantities of fluid to try to control his POTS. POTS is a well recognised medical condition of uncertain aetiology. It is not just found in people who think they have ME. Brian’s delusional state leads him to believe that he can control his POTS by drinking vast quantities of fluid.

Sadly, you cannot have a rational discussion about such an issue with the militant ME brigade. They have sprung into action. There is already a Facebook site run by a teacher who considers that being a teacher gives him as much knowledge and experience as a psychiatric nurse." by http://nhsblogdoc.blogspot.com/ under:

Can people with ME be mentally ill?

OPEN LETTER to the CHIEF MEDICAL OFFICER

from Invest in ME

Dear Sir Liam,

The 12th day of May is recognised (celebrated would be an inappropriate term) as ME Awareness Day in many countries. It is the focal point of what has become ME Awareness Month – a month dedicated to raising awareness of myalgic encephalomyelitis (ME or ME/CFS).

As you know Invest in ME is a UK charity that was created by families of children with ME or persons who suffer from ME themselves and who were appalled and frustrated at the lack of action from government, departments of health, healthcare organisations, charities and individuals – all purporting to service or represent people with ME yet seemingly doing little or nothing.

Since it was formed Invest in ME has organized and hosted an annual International ME/CFS conference in Westminster, London, with the aim of educating healthcare staff, the media, politicians, ME support groups and people with ME of the biomedical research which is taking place.

On 28th/29th May 2009 we are holding our fourth conference.

How a tiny tropical fish could hold the cure to motor neurone disease


A tiny tropical fish could provide the key to curing motor neurone disease and some forms of paralysis, scientists believe.

Scottish researchers have found that zebrafish are capable of producing new motor neurones - the cells that control muscle movements like walking - when repairing damage to their spinal cord.

The team believes the discovery could lead to a drug for the nerve illness that has crippled Professor Stephen Hawking and help people paralysed by spinal damage, like Superman star Christopher Reeve.

The 4th IiME International ME/CFS Conference 2009


The conference will be held on 29th May 2009 in London and builds on the successful biomedical research conferences organised by Invest in ME in previous years.

As in previous years Invest in ME aim to raise awareness of the neurological illness myalgic encephalomyelitis (ME/CFS) and we shall be focusing on severely and moderately affected patients with ME as part of our campaign for a national strategy for biomedical research into ME which will lead to treatment and a cure for this devastating illness - an illness which is about 5 times more common in the UK than HIV/AIDS - yet which has had little funding spent on biomedical research.

At the 2009 conference we will raise more awareness of severe ME - a group of patients who are not represented in research trials and misunderstood by healthcare services.

Many believe that studying severe ME will yield treatments and cures for this illness and have repercussions for other services including management of ME.

Fair tests of treatments in health care


Over the past half century, health care has had a substantial impact on people’s chances of living longer, and being free of serious health problems. It has been estimated that health care has been responsible for between a third and a half of the increase in life expectancy and an average of five additional years free of chronic health problems (Bunker et al. 1994).

Even so, the public could have obtained - and still could obtain - far better value for the very substantial resources invested in research intended to improve health. Furthermore, some of the treatment disasters of the past could have been prevented, and others could be prevented in future.

The James Lind Library has been created to improve general understanding of fair tests of treatments in health care, and how these have evolved over time.

Misleading claims about the effects of treatments are common, so all of us should understand how valid claims about the effects of treatments are made.

Without this knowledge, we risk concluding that useless treatments are helpful, or that helpful treatments are useless.

Sunday, May 10, 2009

UK patient with ME sectioned for "abnormal illness beliefs"


"Brian Nicholson a young UK patient with POTS a subtype of ME (postural orthostatic tachycardia syndrome) has found himself sectioned under the UK's notorious mental health act.

Though of no danger to society Brian has now joined the ranks of those patients whose human rights are flouted and abused.

Brian is now imprisoned in a secure psychiatric unit because he has ME. The psychiatrists treating him consider this to be "an abnormal illness belief".

To find out more and to support Brian please go to the facebook group:

http://www.facebook.com/group.php?gid=75273923533

(this is what happened to Sophie Mirza - she died as a result)"

Birth control for men in one injection


Scientists believe they are one step closer to developing an effective male contraceptive jab after successfully carrying out the largest feasibility study to date.

Researchers at the National Research for Family Planning in Beijing injected 1,000 healthy, fertile male patients with a testosterone-based jab over a two-year period and found only 1 per cent went on to father a child. The men were all aged between 20 and 45 and had fathered at least one child in the two years before the testing began. They were also all involved with healthy female partners between the ages of 18 and 38 who had no reproductive problems of their own.

Friday, May 8, 2009

Royal Society meeting - ME and CFS, hearing the patient's voice, July 11

The Royal Society of Medicine is now taking bookings for the latest in its series of Medicine and ME meetings on "ME and CFS – Hearing the patient's voice" which will be held at 1 Wimpole Street, London W1G OAE on Saturday, July 11. The arrangements have been a joint collaboration with The ME Association, Action for ME, the Association for Young People with ME (AYME), The 25% ME Group for severe sufferers, and the Young ME Sufferers Trust.

Read more...

Wednesday, May 6, 2009

Speed camera boss banned for... speeding

Tom Riall
A senior executive at a speed camera firm was banned from driving for six months today after admitting speeding at more than 100 mph on a 70 mph limit dual carriageway.

Tom Riall, a divisional chief executive at Serco, was recorded driving at 103 mph in his blue Volvo on the A14 in Newmarket, Suffolk, just before 1pm on 4 January.

Riall was sentenced at a hearing at Sudbury Magistrates' Court, the Press Association reported.

Riall is head of Serco's Home Affairs division, which has installed Gatso speed cameras at around 4,500 sites around Britain since 1992.

Professor Wessely: "Chronic fatigue is not all in the mind"


"AT LONG last, we are beginning to get to grips with chronic fatigue syndrome. Differences in gene expression have been found in the immune cells of people with the disease, a discovery that could lead to a blood test for the disorder and perhaps even to drugs for treating it.

While nobody doubts CFS exists, just about every aspect of it is controversial.

Some say it is the same as myalgic encephalomyelitis, or ME; others disagree.

Many specialists are convinced it does have a biological basis, but pinning down physical abnormalities common to all patients has proved tough. People with CFS have often received little sympathy from doctors who dismiss it as "all in the mind".

Now Jonathan Kerr's team, which is moving to St George's University of London, has compared levels of gene expression in the white blood cells of 25 healthy individuals with those in 25 patients diagnosed as having CFS according to strict criteria. The researchers found differences in 35 of the 9522 genes they analysed using DNA chip technology."

Professor Wessely: CDC agrees that ME is not the same as CFS, OOPS ...



"Various terms are often used interchangeably with CFS. CFS is the preferred term because it has an internationally accepted case definition that is used in research and clinical settings.

The name chronic fatigue and immune dysfunction syndrome (CFIDS) was introduced soon after CFS was defined; there is no case definition for CFIDS, and the name implies an understanding about the pathophysiology of CFS that does not currently exist.

Chronic active Epstein-Barr virus (EBV) infection (chronic mononucleosis) was thought to be the cause of CFS during the 1980s, and this association is now known to be rare.

However, post-infection fatigue syndromes have been associated with EBV and other infectious agents. The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS."

Monday, May 4, 2009

The electric Tesla is jolting competitors like BMW.


We may never know who or what killed the electric car. The real question now is whether PayPal founder Elon Musk can revive it. By Jonny Lieberman

I HONESTLY WASN’T OUT TO PLAY BOY RACER in someone else’s hundred-thousand-dollar car. But what was I supposed to do when I pulled up at a stoplight next to a BMW M5, with its snarling 507 horsepower V10, in a Tesla Roadster, the all- electric sports car I had on loan from a dealership?

The race was on.

But it quickly became more like a chase as the mighty Bavarian was bested by the fleet Tesla. With my opponent far behind me, I hit the regenerative brakes, which sound strangely similar to the Millennium Falcon exiting hyperdrive.

I pulled over to give my now bloodless knuckles a rest, and so did the vanquished M5. The driver walked up, mouth agape, and exclaimed, “Wow!”

Portuguese Men o'War invade Med for first time in a decade


Anyone planning to take a Mediterranean holiday in defiance of the plunging pound may be stung by something more painful than the exchange rate: the killer Portuguese Man o' War, one of the world's most poisonous jellyfish.

The graceful glutinous creature, whose trailing tentacles carry a potentially lethal poison, was spotted this week off Spain's favourite beaches for the first time in 10 years.

Charities launch £1m appeal for ME research

Two charities are launching a recession-busting campaign to raise £1,000,000 for biomedical research into the much-misunderstood illness ME/ Chronic Fatigue Syndrome. Read more...

Sunday, May 3, 2009

'Dr Death' arrives in UK

Dr Nitschke

A controversial Australian doctor dubbed "Dr Death" for his promotion of euthanasia will today launch a kit to test the effectiveness of suicide drugs.

Philip Nitschke runs Exit International, which distributes detailed information on how to commit suicide. The new kit, which he plans to sell in the UK for £35, allows people to test the potency of a sedative drug – sodium pentobarbital – to make sure it will be fatal.

A growing number of Exit International's 3,500 members are buying vials of the drug from online shops in Mexico and South-east Asia, but labels detailing the required dose are often missing. The kit lets users extract a tiny amount of the drug with a syringe and then mix it with testing chemicals.

Dr Nitschke and his partner Fiona Short were held for nine hours by immigration officials at Heathrow yesterday before being allowed into Britain to begin their tour.

Beating the science cheats


FOR 13 years, Scott Reuben was at the top of his profession. An anaesthesiologist at Baystate Medical Center in Springfield, Massachusetts, he was an influential figure in the treatment of post-operative pain. But in March, Reuben was exposed as a fraud. An internal audit found that he had faked 21 of his studies. As a result of his misconduct, thousands of patients may have been treated with drugs that did nothing to aid their recovery.

A Recent Example. . . .
Sat May 02 11:29:20 BST 2009 by Susan Marshall

And NS recently published an interview with psychiatrist simon wesseley, promulgating his highly dangerous notions that WHO CDC-10 G 93.3 (Myalgic Encephalomyleitis) is a somatoform disorder, whose "work" should never have got past peer review because he refuses to distinguish it from chronic fatigue, thus studying a gamut of heterogenous patients, and despite well over 500 comments, including multiple references to a mass of real scientific studies demonstrating it to be the very real organic multi-system disease that it is, robbing thousands of folk of their ability to live their lives, and repeated requests to publish a review of these, or at least to publish an article to balance the original, has still done nothing.

We're still waiting, NS......

Evidence that ME/CFS is not a somatisation disorder

Margaret Williams 26th April 2009

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) is not a somatisation disorder. That ME/CFS is not a somatisation disorder is not simply a matter of belief or opinion but is a matter of substantive fact.

ME has been internationally classified since 1969 by the World Health Organisation (WHO) as a disease of the Nervous System.

There are now over 5,000 peer-reviewed published scientific papers which demonstrate unequivocally that it is not a somatisation disorder. To assert otherwise signifies either a serious failure to keep up-to-date with medical science (as NHS Consultants are – or used to be – contractually required to do), or a perverse and irrational denial of a large body of biomedical evidence that shows ME/CFS to be a complex neuroimmune disorder affecting every major bodily system and that recovery is rare.

The wealth of scientific biomarkers that distinguish ME/CFS from “chronic fatigue” (which may indeed be a somatisation disorder) include the following:

· abnormal brain scans (SPECT & PET scans) and MRI scans that are consistent with organic brain syndrome, showing focal demyelination and/or oedema in the sub-cortical area

· a dysregulated HPA axis

· a dysregulated antiviral pathway (RNase-L)

· cardiac abnormalities

· abnormal capillary flow

· low circulating blood volume

· abnormal ergometry test (indicating immediate anaerobic threshold)

· haemodynamic instability

· abnormal immune profile

· gene profiling

All the above investigations are specifically not recommended by NICE in its Clinical Guideline 53 on CFS that was published on 22nd August 2007. This means that they are effectively proscribed in the UK, as no Primary Care Trust (PCT) will fund them if NICE does not recommend them (and NICE Guidelines are to become legally enforceable in 2009).

A (documented) major cause of death in ME/CFS is heart failure.

A mismatch between metabolic demand and cardiac output, even very briefly, will kill.

Any kind of muscle exercise can cause the patient to be almost incapacitated for some days afterward. In severe cases, the patient is usually confined to bed. What is certain is that when one reviews (the) clinical features and laboratory results, it becomes plain that this is an organic illness in which muscle metabolism is severely affected”. (Postviral fatigue syndrome PO Behan WMH Behan Crit Rev Neurobiol 1988:4:2:157-178)

“In my experience, (ME/CFS) is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages” (Dr Daniel L Peterson: Introduction to Research and Clinical Conference, Fort Lauderdale, Florida, October 1994; published in JCFS 1995:1:3-4:123-125)

“ME in adults is associated with measurable changes in the central nervous system and autonomic function and injury to the cardiovascular, endocrine and other organs and systems. The patient with the diagnosis of ME/CFS is chronically and potentially seriously ill. These ME/CFS patients require a total investigation and essentially a total body mapping to understand the pathophysiology of their illness and to discover what other physicians may have missed. A patient with ME is a patient whose primary disease is central nervous system change, and this is measurable.
The belief that ME/CFS is a psychological illness is the error of our time”. (The Complexities of Diagnosis. Byron Hyde. In: Handbook of Chronic Fatigue Syndrome. Leonard A Jason et al. John Wiley & Sons, Inc. 2003)

“Our patients are terribly ill, misunderstood, and suffer at the hands of a poorly informed medical establishment and society”
(Professor Nancy Klimas, University of Miami, AACFS In-coming Presidential Address: Co-Cure, 21 March 2005: http://www.co-cure.org)

“There is evidence that the patients with this illness experience a level of disability that is equal to that of patients with late-stage AIDS, patients undergoing chemotherapy (and) patients with multiple sclerosis” Professor Nancy Klimas, University of Miami, speaking at the launch of the US CDC campaign to raise awareness of ME/CFS, 3 November 2006, National Press Club, Washington DC)

Margaret Williams 26th April 2009

Friday, May 1, 2009

Johann Hari: Life-threatening disease is the price we pay for cheap meat


Modern factory farms have created a 'perfect storm' environment for powerful viruses

A swelling number of scientists believe swine flu has not happened by accident. No: they argue that this global pandemic – and all the deaths we are about to see – is the direct result of our demand for cheap meat. So is the way we produce our food really making us sick as a pig?

At first glance, this seems wrong. All through history, viruses have mutated, and sometimes they have taken nasty forms that scythe through the human population. This is an inescapable reality we just have to live with, like earthquakes and tsunamis. But the scientific evidence increasingly suggests that we have unwittingly invented an artificial way to accelerate the evolution of these deadly viruses – and pump them out across the world. They are called factory farms. They manufacture low-cost flesh, with a side-dish of viruses to go.

To understand how this might happen, you have to compare two farms. My grandparents had a pig farm in the Swiss mountains, with around 20 swine at any one time. What happened there if, in the bowels of one of their pigs, a virus mutated and took on a deadlier form?

At every stage, the virus would meet stiff resistance from the pigs' immune systems. They were living in fresh air, on the diet they evolved with, and without stress – so they had a robust ability to fight back.

If the virus did take hold, it would travel only as far as the sick hog could walk. So if the virus would then have around 20 other pigs to spread and mutate in – before it would hit the end of its own evolutionary path, and die off.

If it was a really lucky, plucky virus, it might make it to market – where it would come up against more healthy pigs living in small herds. It had little opportunity to fan out across a large population of pigs or evolve a strain that could be transmitted to humans