Monday, June 29, 2009

Charcot's Bad Idea

Author: Simon Overton
ISBN: 1409265420

Angela Kennedy:
"This book charts the ways in which the ideas of a 19th Century neurologist became enshrined in the thinking of modern neuropsychiatry. It looks at how the diagnosis of hysteria and conversion disorder was revitalised by a group of like-minded physicians under the terms of "functional weakness" and "functional neurological deficit" in order to "develop constructive ways of talking with patients". Overton claims this approach has fundamentally failed and the often hilarious jibes he makes at some sectors of the medical profession only highlight further the need for doctors to listen to their patients. "Deserves to be part of the literary canon"-"

Jodi Bassett:

"Simon Overton is a fellow advocate that I communicate with regularly.

Simon was kind enough to ask me to write the forward for this book.

An excerpt from the forward text:

"Substantial medical evidence spanning many decades continues to be ignored by those in positions of power who are abusing that power to further their own vested interests. Once an idea takes root in the scientific community it is not reason but the ability to gather kudos and grab research funding that informs dominant thinking. These groups and individuals are helped immeasurably by the creation of bogus disease categories, categories such as 'Chronic Fatigue Syndrome' and other unscientific concepts such as somatisation disorder, functional weakness, conversion disorder, hysteria, and so on.

Despite an utter lack of scientific legitimacy and the enormous costs to the many patients involved and to the community at large, these massive medical frauds have continued in perpetuity almost entirely unchallenged by the world's media, human rights groups, and governments. It is a worldwide disgrace and one of the biggest scandals in the history of medicine.

How much more extreme do the suffering and abuse caused by these malign scams have to be? How many more very ill patients have to be denied even basic medical care? How many more hundreds of thousands of children and adults worldwide have to be left severely disabled or dead through inappropriate treatment?

Simon Overton is to be congratulated for creating such a timely, intelligent and compelling book on this important topic. More uncompromising educational efforts like this one must be produced if change is ever to occur. The fox has been left in charge of the hen house for far too long already. Knowledge is power.

May the day soon come when such books (and other advocacy projects) are no longer needed, and when patients can rely on something as simple as treatment based on legitimate scientific evidence and on the reality of their pathology - rather than being subjected to various self-serving and illogical pseudo-scientific `theories'. Such ideas are extremely unlikely to help any of the patient groups involved to regain their health."

I highly recommend this book. The chapter which deals with the case of Ean Proctor in particular is a must-read for anyone involved in this field of medicine.

Jodi Bassett, founder of the 'Hummingbirds' Foundation for Myalgic Encephalomyelitis' (HFME)"

ORDER via Amazon

Thursday, June 25, 2009

cognitive dysfunction in CFS/ME ...

Chief Medical Officer’s Report (2003):

“Magnetic resonance imaging studies have found subtle white matter abnormalities in some individuals, more common in those without coexistent psychiatric conditions, leading to the hypothesis that some CFS/ME patients have a subtle encephalopathy.

The numerous studies on cognitive functioning have not always found consistent results and can be criticised for not reflecting the severity of subjective complaints.

However, it seems likely that cognitive dysfunction in CFS/ME cannot be explained solely by the presence of a coexistent psychiatric disorder. Vestibular dysfunction is proposed to explain the widely reported symptom of “dysequilibrium”.“

A gene signature for post-infectious chronic fatigue syndrome

The ME Association is delighted to announce that a provisional abstract and paper on research into gene expression, funded by our Ramsay Research Fund, has today been published by BMC Medical Genomics.


Sunday, June 21, 2009

"Anyone who has a classic car hates his wife ... "

Volvo 1800E
"Classic cars are all rubbish. My Mercedes Grosser is rubbish. The Ferrari 250 GTO is rubbish. Even a Lancia Stratos is rubbish. They are typewriters in a computerised world. So why would anyone choose to buy such a thing?

Simple. Anyone who has a classic car hates his wife ....."

Lancia Stratos

Saturday, June 20, 2009

Professor Luc Montagnier and ME

"Scientists have already uncovered a lot about ME, but this information does not reach professional healthcare personnel, and the disease is still not taken seriously.

It is about time this changes."


Dr. Montagnier is best known for his 1983 discovery of the human immunodeficiency virus (HIV), which has been identified as the cause of AIDS. This discovery led directly to the development of a test for detecting the presence of HIV in blood samples.

Telephone interview with Luc Montagnier immediately following the announcement of the 2008 Nobel Prize in Physiology or Medicine, 6 October 2008. The interview was recorded while Luc Montagnier was attending a conference in the Ivory Coast, and the interviewer is Adam Smith, Editor-in-Chief of

Monday, June 15, 2009

Future hope for ME sufferers?

Despite affecting up o 240,000 people in this country, the true nature of M.E. has eluded scientists. A group's been set up to examine the condition and try to work out a prevention - there are claims that a cure may be near.

Wednesday, June 10, 2009

Lady GaGa and Speedy !!!

The Poker Face star is taking a break with her boyfriend, known only as Speedy, in Hawaii......

The spy who started the Cold War

MI5 and KGB files have at last revealed the identity of the agent who passed Britain’s atomic bomb secrets to the Soviet Union — and triggered the Cold War

BY Ben Macintyre, The Times

For ten years a Soviet spy codenamed “Eric” fed Britain’s nuclear secrets to Moscow, paving the way for the Cold War. The KGB treasured him as its “main source” of atomic intelligence; MI5 suspected him, trailed him, opened his letters and monitored his every move. But he was never caught.

Today, 70 years later, with the opening of MI5 and KGB files, “Eric” can finally be identified as Engelbert (Bertie) Broda, a brilliant Austrian scientist who evaded Britain’s spy-catchers for a decade while working as a Soviet mole in the heart of the wartime nuclear research programme.

The amazing story of Bertie Broda reads like a John le Carré novel: it is a tale of espionage and counter-espionage, elaborate spycraft, love and deception. But, above all, it is the story of a double-life, filling in one of the last pieces in the complex jigsaw of Cold War espionage.

Broda was the KGB’s prize spy: from the Cavendish Laboratories at the University of Cambridge, he provided Soviet spy chiefs with a stream of Britain’s nuclear secrets, including the blueprint for the early nuclear reactor used in the US Manhattan Project.

Agent “Eric’s” secrets enabled the Soviet Union to catch up in the race to build the bomb and set the stage for the nuclear standoff that followed. The most remarkable thing about the scientist-spy was his ability to evade detection: he died in 1983, a celebrated professor of science at the University of Vienna.

Tuesday, June 9, 2009

Hydrogen sulfide and mitochondria

FASEB J. 2007 Jun;21(8):1699-706. Epub 2007 Feb 21..

Sulfide, the first inorganic substrate for human cells.

Goubern M, Andriamihaja M, Nübel T, Blachier F, Bouillaud F.
Ecole Pratique des Hautes Etudes and Nurélice
UR909, INRA, F-78352 Jouy en Josas, France.

Hydrogen sulfide (H2S) is produced inside the intestine and is known as a poison that inhibits cellular respiration at the level of cytochrome oxidase.

However, sulfide is used as an energetic substrate by many photo- and chemoautotrophic bacteria and by animals such as the lugworm Arenicola marina.

The concentrations of sulfide present in their habitats are comparable with those present in the
human colon.

Using permeabilized colonic cells to which sulfide was added by an infusion pump we show that the maximal respiratory rate of colonocyte mitochondria in presence of sulfide compares with that obtained with succinate or L-alpha-glycerophosphate.
This oxidation is accompanied by mitochondrial energization.

In contrast, other cell types not naturally exposed to high concentration of sulfide showed much lower oxidation rates.

Mitochondria showed a very high affinity for sulfide that permits its use as an energetic substrate at low micromolar concentrations, hence, below the toxic level.

However, if the supply of sulfide exceeds the oxidation rate, poisoning renders mitochondria inefficient and our data suggest that an anaerobic mechanism involving partial reversion of Krebs cycle already known in invertebrates takes place.

In conclusion, this work provides additional and compelling evidence that sulfide is not only a toxic compound. According to our study, sulfide appears to be the first inorganic substrate for mammalian cells characterized thus far.

PMID: 17314140 [PubMed - indexed for MEDLINE]

Bereaved children: We need to talk about death

Sir Al Aynsley-Green knows how it feels to lose a parent at a young age – and now he wants to help other bereaved children. By Amol Rajan

Not many people know that every half an hour a child in Britain loses a parent.

Fewer still know that the rate at which British children lose either a grandparent, close school friend, or mentor is higher still.

Our ignorance of these alarming figures is partly due to the fact that no official statistics exist for the number of young people experiencing the trauma of bereavement.

The above figures are simply the conservative estimates produced by an organisation known as the Childhood Bereavement Network.

And yet the severity of the problem is beyond dispute. Bereavement means "to leave desolate or alone, especially by death". It is distinguished from grief, which means any form of deep mental anguish, by its emphasis on the solitude of those who endure it. And to a much greater extent than adults, children struggle to cope with the toxic combination of sorrow and solitude.

Monday, June 8, 2009

DO NOT ...

Abusive Behavior in Treatment of ME/CFS patients

By Mary Schweitzer on June 4, 2009 at 7:30pm

"From Slightly Alive, unpublished book manuscript, Mary M. Schweitzer, Ph.D., ©2009

As I read back through the psychiatric studies used to back the therapies of CBT and GET, and also as I began to read the mammoth and brilliant piece of work just released by Malcolm Hooper:

The Mental Health Movement: Persecution of Patients?

I found myself thinking about the steps that an abusive spouse or parent takes to perpetrate the crime. People often ask victims of abuse, "Why didn't you report this the first time it happened?" The victim generally has no good
answer, because he or she has been the unwitting subject of a psychological campaign by the abuser to prevent any disclosure of what is going on. Here are the main means by which abusers are able to continue their cruelty for years.

1. Isolate the victim
2. Tell the victim nobody will believe his/her story.
3. Threaten the victim with harm if he/she tries to tell the story anyway.

1. Isolate the Victim

This is accomplished by a diagosis that leaves the worst patients bereft of medical care and isolated at home. People in the "real world" do not see the worst cases. They do not see them when they come in to clinics - because they
don't come in to clinics. They do not see them at the grocery store or outside because by leaving them untreated, they have rendered the worst victims unable to participate in any way in the outside world. And by laughing at our disease,
they keep the walking wounded invisible too, because no one wants to confess to HAVING this disease. So the victim has been isolated. In the places where M.E. was a valid diagnosis, the abusive relatioship first required the premise that
M.E.=CFS (it does not), followed by the premise that CFS = "maladaptive coping mechanisms to illness" or "inappropriate desire to play the sick role."

2. Tell the victim that nobody will believe his/her story

Now, this has a twist. The recommendations of the Wessely-White-Sharpe-Chalder-Deary school of professional abuse don't have to tell the victim he/she won't be believed - we already know that. The twist in this case is in the information they are giving health care providers.

They say NOT TO BELIEVE WHAT WE TELL THEM. The concept of "false illness beliefs" is heavily emphasized in all of the literature, including the CFS website of King's College London.

They recommend that the medical profesional offer sympathy and PRETEND to believe what the patient is saying, but they warn not to get drawn in. Doctors who DO believe what the patient is saying are themselves isolated by
being charged with supporting abnormal "illness behaviors."

The CDC's version of this was to say - There were no cluster outbreaks. There were just outbreaks of diagnosis. Patients would go from doctor to doctor, seeking a diagnosis to confirm the patient's own beliefs about his/her
illness. it is, of course, an insult to the doctors who helped patients in the cluster outbreaks as well as an insult to patients - but the argument succeeded. Few people know about the cluster outbreaks of the 1980s, and nobody knows about those that have happened since. You will find evidence of this in Hillary Johnson's masterpiece, Osler's Web, and I was present to hear Dr. Reeves use this argument to explain away the "theory" of cluster outbreaks at the CFSAC.

3. Threaten the victim with harm if he/she tries to tell the story anyway.

This is the scariest one of the three - scary because we are not talking here about an individual, but about a society, about a government entity.

About the very people who are supposed to help you (doctors).

What is the threat?

In the UK it's very clear: You will be sectioned.

You will be sent to a psychiatric hospital. The threat can be the withdrawal of any medical care at all. That is, if you persist in peppering me with information about CFS, I will no longer be your doctor - so where will you go when you need medical treatment for something else? I'll treat you - but don't bring up that silly disease fantasy.

Sophia Mirza needed care, but no doctor would agree to her simple request that she just see somebody without the threat of being sent into a psychiatric hospital.

Sophia had been mistreated badly in a mental hospital and did not want to go back.

No doctor would promise not to send her back to the psychiatric hospital, so she saw no doctors. She had been threatened into isolation.

It was abuse by the medical profession that killed her.

The threat is greater in both nations when applied to young people who become severely ill with M.E., because it is the young who are the most vulnerable. The threat is that they will be taken from their parents, because their parents
have gone to a lot of trouble to seek a diagnosis and find a way to make their child more comfortable - perhaps even find a cure.

This should be perceived as admirable behavior, but the diagnosis of "factitious illness" and "factitious illness by proxy" represent cruel violations of the normal doctor-patient relatioship. In the U.S., the threat of "coming out" - of trying to get treatment and accomodations for your child - is that your child will be sent off to the foster care system and never returned. The threat is to have happen to you what is happening to the Baldwin family in North Carlina, whose son Ryan was removed from his parents' home apparently because his parents were successful in finding a diagnosis that could help relieve some of his discomfort, successful in getting him a wheelchair to help him be more independent, and successful in being accepted for disability payments in his behalf with which to make his life more comfortable, and fund
his medical care.

In England, the threat is to be "sectioned" - to be sent to a mental hospital. And in both nations, this threat is very, very real. So this is the final threat:

If you come out about what you have, we will make your life miserable. We may even kill you.

So says the abuser.

So say the advocates of the British psychiatric school of "CFS treatment."

So say the marketing wizards behind cognitive behavior therapy and graded exercise therapy.

What does history tell us about abuse? The victim needs help from the rest of society.

Last week there were meetings in London and in Washington that - hopefully - can inform society about the institutionalized pattern of abuse which has been directed towards patients so unfortunate as to be diagnosed with "CFS".

God willing, things will change."
Mary Schweitzer

Saturday, June 6, 2009

Carefully ...

ME: Proof that it isn't all in the mind?

Belgian doctors, Professor Kenny De Meirleir and Dr Chris Roelant, have developed a simple test that, they claim, solves the mystery of 'yuppie flu'.

By Liz Hunt, Published: 7:00AM BST 01 Jun 2009

Anna's deterioration was rapid and unrelenting. One moment the pretty, young Scandinavian woman was at the peak of youthful vitality, newly married and excited about the future. The next, that future was much diminished, her life limited to the environs of her bedroom, and dictated to by the illness that had overwhelmed her.

It had started with persistent fatigue, muscle pain, and a growing sensitivity to light after a honeymoon trip to Mexico in the summer of 2006. By December, she was in a wheelchair. Three months later she was bedridden, her face pale, her features shrunken, barely able to move or talk, and being fed through a naso-gastric tube.

Anna – not her real name as her identity is being protected at the request of her family – was the subject of a short film shown at a conference in London last week. Her case, according to Professor Kenny De Meirleir of the Vrije Universiteit Brussel, Belgium, illustrates the worst ravages of myalgic encephalomyelitis/encephalopathy or ME, also known as chronic fatigue syndrome or post viral fatigue syndrome.

Once it was derided as "yuppie flu" because, following its emergence in the early Eighties, its "typical" victim was, supposedly, a high-achieving young professional. ME was also assumed by many doctors, and much of the public, to be psychosomatic in origin – if it existed at all.

In more enlightened times, ME is now accepted by the World Health Organisation, and Britain's medical royal colleges, as a complex, chronic disease of varying severity characterised by a complex set of symptoms. (In addition to extreme fatigue, and general malaise, there are musco-skeletal symptoms, especially muscle pain, brain and central nervous symptoms, evidence of immune system dysfunction, mood swings, depression etc.) According to the ME Association, there are 250,000 sufferers in Britain.

The debate about the cause of ME continues to flourish at conferences, in journals and on websites: are the symptoms a physical manifestation of a problem in the brain such as a chemical imbalance; is sustained stress or exertion to blame; or is ME the result of abnormal physiological functioning, with an organic cause, such as a viral or bacterial infection, or exposure to a toxic agent?

The answer is crucial because it determines the direction of research funding which has, according to Prof De Meirleir, for too long been skewed in favour of a psychiatric approach. He hopes to change that. After more than 20 years of investigation, and having assessed and treated thousands of patients in Europe and America, Prof De Meirleir, who is an internist at the Himmunitas Foundation in Brussels (a non-profit organisation specialising in chronic immune disorders), believes he has identified a mechanism to explain the development of ME that opens up new treatment options.

In addition, he and his fellow Belgian, Dr Chris Roelant, Chief Operating Officer of the diagnostics company Protea biopharma, have developed a self-diagnosing urine test for ME. If they are correct – and that must be determined by scrutiny of their research and use of the test by other scientists and doctors – then it marks an encouraging breakthrough.

The symptoms of ME are wide-ranging and occur in a number of other conditions, so a diagnosis of ME is currently reached only after eliminating other causes.

"This test will tell patients that it is not a problem between their ears, but a real physiological problem," insists Dr Roelant.Prof De Meirleir and Dr Roelant have, somewhat controversially, opted to go public with their findings before publication in a peer-reviewed journal.

They say this is because of the implications of their research, especially for severely debilitated ME patients. At the Invest in ME conference in London last Friday they also raised the possibility of "transmissability" of the illness in this group of patients – another controversial claim.

Prof De Meirleir has never believed that ME is an "illness of the mind". Exercise physiology was his initial area of expertise and it was in this capacity that he was asked by a psychiatrist to assess some of his patients who were suffering from a mystery illness characterised by extreme fatigue.

"One of them was a banker who started work at 9am and had to finish at 11am because he was so exhausted," says Prof De Meirleir. "He did not appear to be suffering from any psychiatric disorder."

The case ignited the young doctor's interest. During a six-month sabbatical at the University of Pennsylvania in 1990, he heard about the "Lake Tahoe epidemic". In 1984, hundreds of people living in a small town on Lake Tahoe in California succumbed to a flu-like illness. The symptoms, including fatigue, neurological and immunological symptoms, persisted in just under 10 per cent of the population (about 300). This was followed by numerous reports of outbreaks of a similar illness around the world, and persuaded Prof De Meirleir of the likelihood of a causative agent being involved in ME, a fact that has heavily influenced his research interests. Since the early 1990s, he has built up a large clinical practice in Brussels where he sees around 2,000 new patients a year. Antibiotics are a cornerstone of his therapeutic approach, as dictated by his research.

In recent years, and in collaboration with a microbiologist, Dr Henry Butt, and his team at the University of Melbourne, Prof De Meirleir has focused on bacteria in the gastro-intestinal tract. "This is an obvious place to start since 80 per cent of immune system cells are located here," he says. A healthy, functioning gut is colonised by "good" bacteria that aid digestion and contribute to our wellbeing. Many ME patients suffer from multiple intestinal symptoms, and Prof De Meirleir believes that an overgrowth of "bad" bacteria, including enterococci, streptococci and prevotella, is to blame. These bacteria are normally present in very small quantities in a healthy gut, but can initiate a sequence of events leading to the multifarious symptoms of ME if they proliferate. (This research will be published in the journal In Vivo, in July).

These "bad" bacteria produce hydrogen sulphide (H2S)– a gas naturally occurring in the body, where it has several functions – in minute quantities. However, in larger quantities, it is a poisonous gas that suppresses the immune system, and damages the nervous system, according to Prof De Meirleir. (Hydrogen sulphide is produced by some animals in preparation for hibernation because it "shuts down" the body which, in effect, is what occurs in ME.) In addition, Prof De Meirleir described how he believes the gas reacts with metals, including mercury, introduced in minute amounts as contaminants in food. The form of mercury produced after reacting with hydrogen sulphide also disrupts the normal production of energy (known as the Krebs Cycle) by individual cells, and this, he says, would explain the energy shortfall experienced by ME patients.

Normal cellular functioning is inhibited and, over time, this generates damaging free radicals, highly reactive molecules that distort the structure of key proteins, such as enzymes and hormones, necessary for chemical reactions. This results in what Prof De Meirleir calls "aberrant" proteins (or prions), which lead to further symptoms as the body is increasingly compromised, and which he says may play a role in the transmissibility of ME.

The urine test, developed by Prof De Meirleir and Dr Roelant in their privately funded research, detects the presence of hydrogen sulphite metabolites, which they say confirm the presence of abnormal quantities of hydrogen sulphide-producing bacteria. The intensity of the colour change in the urine indicates the severity of the disease progression.

Not every ME patient progresses to its most severe form, says Prof De Meirleir, but the varying symptoms can all be explained by this proposed mechanism for the disease. In the worst cases of ME, he says it can be shown that there is an almost complete eradication of "good" bacteria (such as E. coli), the presence of a high number of "bad" bacteria in stools, metal deposits in tissues, and the presence of aberrant proteins in saliva. "What we have shown is that these patients have an organic disease involving one of the most toxic substances [H2S] that exist," he says.

So what causes the proliferation of harmful bacteria in the first place? There are, he says, many potential triggers ranging from food- borne bacterial (eg salmonella) infections, viruses, and toxins, or mental stress. He says many ME sufferers have a history of gut disorders including gluten and lactose intolerance, which may predispose them to colonisation by enterococci and streptococci.

Anna, the 28-year-old Scandinavian patient, is typical in this respect, he claims; she had gut problems in the past, including possible food poisoning while in Mexico. Her treatment focuses on short courses of antibiotics to decrease the numbers of bad bacteria, treatment with probiotic supplements to help restore the good bacteria, plus vitamin and mineral supplements. "She is improving," says Prof De Meirleir.

ME support groups and the medical profession are now considering Prof De Meirleir's work. However, Sir Peter Spencer, chief executive of Action for ME, welcomed the findings, albeit with a caveat: "It is always heartening to see new developments that might bring hope to the 250,000 people in the UK affected by this horrible illness.

"We look forward to seeing Professor Meirleir's findings published in a peer-reviewed journal so that we can develop a better understanding of this research."

Prof De Meirleir says that helping patients like Anna, of whom he has known many, is what has brought him to this point. "This has preoccupied me for more than 20 years. I told [the psychiatrists] we would find a cause, and I believe we have." There are many ME patients and their families who must hope that he is right.

• For more information on the ME urine test see

By Liz Hunt, Published: 7:00AM BST 01 Jun 2009

Friday, June 5, 2009

The National Institute for Clinical Excellence (NICE) and ME ...

Nuclear test veterans win right to sue MoD

Military veterans who claim they were negligently exposed to excessive radiation during nuclear tests in the 1950s won a high court case today permitting them to sue the Ministry of Defence, exposing the government to a potential compensation bill running into hundreds of millions of pounds.

A group of around 1,000 veterans of tests in the South Pacific and Australia between 1952 and 1958 launched the case as they believe radiation exposure caused illnesses including cancer and chromosome damage.

The MoD argued that the group had waited too long to lodge its claim and was thus excluded under limitations regulations. It also argued that the cases were certain to fail at any eventual trial.

But giving his verdict in the high court in London today, Mr Justice Foskett rejected these arguments, pointing to a recent scientific study involving veterans in New Zealand which provided new evidence of the potential health impact of the tests, which would be "crucial and pivotal" for any potential case against the MoD.


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