Chronic Fatigue Is Not

All In The Mind

New Scientist, 23 July 05

Article by Rowan Hooper

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.

The symptoms of chronic fatigue syndrome have been compared to those of a really bad hangover: extreme weakness, inability to think straight, disrupted sleep and headache. But unlike a hangover, the symptoms linger for years, devastating people’s lives.

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 DNS chip technology. The few similar studies done in the past have produced conflicting results, so the team double-checked their results using a more accurate method called real-time PCR. That confirmed that 15 of the genes were up to four times as active in people with CFS, while one gene was less active. The results will appear in the Journal of Clinical Pathology next month.

Kerr is repeating the study in 1000 CFS patients and healthy controls, this time looking at 47,000 gene products. So far, the larger study backs up the earlier results, he told New Scientist.

 

If Kerr really has succeeded where many have failed, and identified clear physical changes in people with CFS, the lingering opinion that it is “all in the mind” could finally be laid to rest. “This exciting new work shows that some aspects of this complex illness may be understandable in molecular terms, and that CFS is not a ‘made up’ illness,” says Russell Lane, a neurologist at Charing Cross Hospital in London.

 

It should also be possible to develop a blood test for CFS. The team has already discovered differences in blood proteins related to the changes in gene expression.

Kerr hopes the work might even lead to treatments. “We have shown that a significant part of the pathogenesis resides in the white blood cells and in their activity,” he says, “It will open the door to development of pharmacological interventions.”

Several of the genes identified by the team in CFS play important roles in mitochondria, the power factories of our cells. “The involvement of such genes does seem to fit with the fact that these patients lack energy and suffer from fatigue,” Kerr says.

One of these gene products, EIF₄G₁, is involved in protein production in mitochondria. It is hijacked by some viruses, so cells may compensate by ramping up gene expression. “I am excited by the paper,” says Basant Puri, a CFS expert at Hammersmith Hospital in London. “The group’s finding of upregulation of  EIF₄G₁ is consistent with subclinical persistent viral infection.”

This fits in with the idea that CFS is sometimes triggered by viruses such as Epstein-Barr, Q fever, enteroviruses and parvovirus B₁₉. “CFS often begins with a flu-like illness which never goes away,” Kerr says.

Of the other genes whose expression varies in CFS patients some are involved in regulating the activity of the immune system. Others play important roles in nerve cells, including a gene called NTE, which codes for an enzyme affected by organophosphates and nerve gases.

Love of Writing Made it Plain

Sailing for Clare [Francis]

Response to Article in The Weekly News, 1 October 2005

Anyone suffering from ME will be happy to hear of someone who has it mildly enough to “get on with their life in spite of it”. (‘Love of writing made it plain sailing for Clare’, The Weekly News, 1 October 2005).

However it should be made clear that this is not always possible and that this is not the choice of the individual, but determined by how severely you have the illness.

The 25%ME Group represents the people with ME who are so severely affected that many of us are totally bedridden and wholly dependent on carers for the basic functions of daily living, others of us are lucky enough to be able to leave home in a wheelchair occasionally. None of us are this ill because we are somehow failing to control the illness, this is how ill we are after trying everything possible and taking into account what works for us.
 

Hayley Klinger

25% ME Group Media Relations

ME, Royal Free Disease and a Psychiatric Obsession
 

The debate about whether the outbreak at the Royal Free was ME is sadly relevant today as the psychiatric profession still attempt to convince doctors that ME is not a physical disease but a state of mind.

The 300 plus studies worldwide which have found serious immunological, neurological, endocrinological and cardiac abnormalities in ME patients have recently been added to by research finding genetic abnormalities. The psychiatrists never refer to this available medical literature but obsessively attempt to find the cause of ME in the personality of patients; initially we were 'yuppies' or type A high achievers, then when this picture did not fit the epidemiological research we became malingerers attempting to avoid work and the stress of everyday life. When this did not quite work either we became people who felt genuinely ill, but weren't!

The disgrace of taking a seriously ill group of people and constructing psychological theories about why they are ill was bad enough back when the Royal Free was closed, but it is still going on in the face of significant medical research proving it irrelevant.

The 25% ME Group represents the interests of severely ill ME patients, many of whom are so ill that they are totally bedridden, some of whom are wholly dependent on carers for the basic functions of daily living and others who are lucky enough to be able to leave home in a wheelchair occasionally. To be so ill and to be faced with a medical profession that thinks ME is somehow psychological has been devastating for thousands of sufferers.
 
Maybe the latest genetic studies will finally silence the psychiatric lobby who have been so peculiarly intent on persuading doctors and the media that nothing much is wrong with such extremely ill patients.

Hayley Klinger

25% ME Group Media Relations