The disease that defies description

'Loss of fine motor function hand co- ordination, back pain, depression, migraine headaches, insomnia, extreme fatigue, blurred…

'Loss of fine motor function hand co- ordination, back pain, depression, migraine headaches, insomnia, extreme fatigue, blurred vision, trouble walking, joint and muscle pain and shortness of breath."

These are just some of the complaints listed in the initial medical assessment of Carol Best, a 45-year-old US Army veteran who spent nine months in Saudi Arabia as part of a Gulf War deployment.

Her story is one of five which Jeff Wheelwright, a distinguished science journalist and former science editor of Life magazine, describes in great detail in his recently published book, The Irritable Heart - Medical Mystery of the Gulf War.

Wheelwright met Best at the West Los Angeles Veterans' Affairs Medical Centre, the largest medical complex within the largest healthcare delivery system in the US. It had also been the location for the investigation of the original "irritable heart" outbreak among ex-Union soldiers in the aftermath of the Civil War.

READ MORE

Veterans with this diagnosis had complained of palpitations, shortness of breath, chest pain on exertion, fatigue, headache, dizziness and disturbed sleep. Even by the standards of the time it was a vague sort of disease. To the military doctors, irritable heart was a mysterious condition.

Best was referred to the Veterans' Affairs Medical Centre in May 1997, specifically to be investigated as part of the Persian Gulf Referral Programme. This would take several weeks and involve a broad range of blood tests, X-rays, scans and other tests aimed at pinpointing a possible cause for her multiplicity of symptoms.

Best was sent to the Gulf in July 1991, some months after the fighting was over. She worked first as a clerk in Dhahran, Saudi Arabia, and then in Kuwait City. As an army reservist, she had volunteered to go; she liked to travel and had a military service ethic.

When Wheelwright asked her age, she said: "I'm 45. I only look 65." According to Best's medical chart, her weight had increased since she had been sick, "from 135 to 210lbs". She listed off her medications: "Excedrin extra strength for headaches. Ultram - that's a painkiller. Melatonin to help me sleep. Magnesium oxide to keep my food down; I have acid reflux."

Picking up another tablet, she said: "That one's Zoloft for depression. I call it my happy pill. I'm on a reduced dose, only a quarter of a tablet, because I really don't like pills."

As Wheelwright tells it, Best is a driven, high-achieving woman who has weathered more than her share of tribulations.

Divorced a number of times, she had gone from being her family's "rock" and powerhouse to a disabled and partially dependent individual. She now uses a cane, must rest after exertion, suffers bouts of deep depression and is never completely free of pain. As far as Best is concerned, all of these can be traced to her nine months in the Gulf in 1992.

She arrived at the Veterans' Affairs Medical Centre with a diagnosis of fibromyalgia. This was confirmed by the rheumatologist attached to the Persian Gulf Referral Programme. But there was disagreement among the specialists about whether she had Gulf War Syndrome or not.

What is a syndrome? It is a collection of signs and symptoms pointing to a unique disorder. But it is also a disease waiting to be clarified. If an exact cause is not found, then the collection of medical findings remains a syndrome, a distinct medical entity that can be distinguished from others but which falls short of being a specific disease.

There is an important difference between the symptoms and signs associated with an illness. Symptoms are felt by the patient and reported to the doctor. A sign is something that a doctor can determine independently. A doctor's description of a person's rash is a sign, as is the temperature reading given by a thermometer.

Generally speaking, when a number of signs are associated with a sickness, it is both easier to diagnose and more likely to carry a definitive disease label.

Seventeen per cent of British Gulf war veterans believe they have Gulf War Syndrome, according to research recently published in the British Medical Journal.

Not, you will note, that they have the medical syndrome. Merely that about one fifth of the 3,000 soldiers questioned thought they had the condition. So why weren't the authors able to say whether the soldiers had Gulf War Syndrome or not? Wheelwright attempts to pin-point the reasons for such vagueness in his book.

The title refers to an US Civil War malady known as "irritable heart". According to Wheelwright, Gulf War Syndrome is simply the latest manifestation of a line of vague and poorly defined illnesses. "Irritable heart" became "shell shock", which later re-emerged as "post-Vietnam Syndrome".

All of these had their civilian equivalents. The "neurasthenia" of the early 20th century has metamorphosed into the present-day "post-traumatic disorder". Wheelwright puts forward the thesis that Gulf War illness belongs in the company of chronic fatigue syndrome (CFS), fibromyalgia and multiple chemical sensitivity - symptom complexes which are on the increase and which have so far evaded a biomedical explanation.

Gulf War Syndrome is a real illness, involving both the body and mind, Wheelwright maintains. But because modern medicine deals with the body and mind separately, the investigation of veterans' illness was always going to fail. "The only way to understand these elusive sicknesses is to consider the mind and body as one suffering system," he says. This remarkable book takes the subject of chronic illness far beyond the medical aftermath of war.

Gulf War Syndrome has never been linked to a specific cause. There have been many theories. Did the Iraqi Army use chemical or biological weapons during the conflict? Could the coalition forces' use of depleted uranium shells be at the root of the syndrome? Did Gulf War Syndrome arise as a result of a cocktail of vaccines given to troops to protect them from possible biological exposure in the desert? The British Medical Journal notes that "it is possible that the 17 per cent of veterans who believed they had the syndrome had a unique adverse exposure not experienced by the 83 per cent who did not". But the researchers also say that those who believe they have Gulf War Syndrome do so because of something they have in common - their active service.

If it all sounds uncharacteristically vague and unscientific, that is because it is. Which leads us to Jeff Wheelwright's theory of a link between fibromyalgia, CFS and Gulf War Syndrome.

According to Wheelwright, "identifying a new syndrome is not just a medical process but something of a social negotiation".

Medicine concentrates on a reductive process of finding objective tests to match an illness. But this reductive method, by its very nature, blocks off a holistic approach to disease. Wheelwright and some of the veterans he has interviewed feel that many of the difficulties and uncertainties surrounding Gulf War Syndrome arise from a failure to appreciate that it results from the body and mind suffering together as a single system.

There are many similarities between Gulf War Syndrome and CFS in terms of the symptoms described by people with both conditions.

People with fibromyalgia syndrome also show many of the same symptoms as those experienced by some Gulf War veterans: fatigue, sleeplessness, stiffness, chest pain, heartburn, irritable bowel syndrome, headache, memory failings, poor concentration and depression.

Women with fibromyalgia outnumber men seven to one and there is also an association with less education and lower-than-average income, which mirrors the profile of a typical veteran with post-Gulf symptoms.

So much for the standard epidemiological approach. What does Best believe? Her perception is "of being afflicted by a neurological process precipitated by her tour of duty of the Middle East and her understanding that chemical warfare was used during that period of time".

As her daughter puts it: "She had many different doctors take a look at her and each one of them came up with the same conclusion. Carol Best indeed had Gulf War Syndrome. Of course they can't call it that, so once again they put it down as fibromyalgia, and also chronic fatigue syndrome".

Why couldn't the LA Veterans' Affairs Medical Centre "call it Gulf War Syndrome"? The answer is partly political - to admit Gulf War Syndrome would raise issues of blame and financial compensation. But it is also a reflection of a fundamental weakness in the strict medical model of disease. Because of the lack of "hard" signs, and the preponderance of "soft" symptoms, doctors begin to flounder and become uncertain.

This is not a situation for which, by and large, their training equips them. Many doctors will over-investigate in repeated attempts to find even one solid sign which will lead them away from uncertainty. Some will begin the process of diagnosis by negotiation with the patient.

Essentially, this means focusing on illness rather than disease. What are the symptoms unique to the patient sitting opposite you? How does this person feel about themselves? What can be done to minimise their symptoms?

Because there is no "disease label", a consideration of the physical, psychological and social impact of the person's illness is the way forward. Ultimately, the doctor must become the facilitator through which the person takes responsibility for their health and "wellness".

The "irritable heart" debate mirrors the one about Gulf War Syndrome. It reveals a confused picture of many views, and even more theories, as to a cause.

Edith Eifran, another science journalist, has written of "dangerous barriers which separate the scientific and humanist cultures". It is to Wheelwright's credit that he has straddled this barrier and introduced the mind-body model of sickness as a means of understanding chronic illness.

Cure, even where exact diagnosis is available, will always be elusive. Caring for the mind and body together is far more likely to ease our journey from the cradle to the grave.

The Irritable Heart - Medical Mystery of the Gulf War by Jeff Wheelwright is published by W.W Norton