Myalgic Encephalomyelitis

Part of the debate – in the Scottish Parliament at 5:03 pm on 23rd January 2002.

Alert me about debates like this

Photo of Alex Fergusson Alex Fergusson Conservative 5:03 pm, 23rd January 2002

I will do my best to overcome the background noise.

Diseases whose main symptom is disabling fatigue have been around for hundreds of years. Indeed, there is evidence that both Florence Nightingale and Charles Darwin suffered from such a condition. It was not until the 1950s that the term myalgic encephalomyelitis began to be used for a specific syndrome. Some did not like the term ME and preferred to call the condition post-viral fatigue syndrome. In 1998, the two names were subsumed under the official designation chronic fatigue syndrome, or CFS.

The names post-viral fatigue syndrome and chronic fatigue syndrome have caused untold damage. In the eyes of a sceptical general public, any name that involves the word "fatigue" simply translates to mean "I am tired." Phrases such as yuppie flu became commonplace. Some even referred to ME as an acronym for malingerer's excuse. In turn, that led to a general scepticism about a condition that was and is increasing at a rate that is so alarming that we should be greatly concerned.

In April 1994, UNUM—one of the largest disability insurers in the United States of America—reported that, from 1989 to 1993, claims for disability due to CFS for men increased by 360 per cent and claims for women increased by a staggering 557 per cent. No other disease category surpassed those rates of increase.

In Australia, researchers found that patients with the disorder have more dysfunction than patients with multiple sclerosis; that the degree of impairment is more extreme than in end-stage renal and heart disease; and that only in terminally ill cancer and stroke patients is the sickness impact profile greater than it is with ME.

In America, research found that chronic fatigue and immune dysfunction syndrome—as ME is sometimes known there—particularly and uniquely disrupts the quality of life. All sufferers related profound and multiple losses—including loss of job, loss of relationship, loss of financial security and loss of future plans, daily routines, hobbies, stamina and spontaneity. Any of us in the chamber who has met constituents with ME will acknowledge the dreadful truth of that statement. To that list, I would add the loss of one's house. Some sufferers' houses are repossessed because they are refused access to the benefits to which they should, in any truly caring society, have almost automatic access on being diagnosed.

Other members will speak about this aspect of the disease, but I cannot stress enough how important it is to re-educate—if members will forgive the term—those who assess ME sufferers when they apply for benefits. It is not enough to say that benefits are a reserved issue. The assessors are appointed by the Scottish Executive. The Executive can and must take immediate action in that field.

Further research has unveiled the intolerable facts that 77 per cent of sufferers experience acute pain; 80 per cent feel suicidal at some stage as a result of their illness; 70 per cent are either never able to, or are often too unwell to, attend general practitioners' clinics; 65 per cent have received no advice from their GP; and 80 per cent of sufferers who are currently bedridden have been refused a home visit. In the face of all those facts, the public remain sceptical and the medical establishment has, until now, considered the problem to be, in essence, a psychiatric one that can be dealt with by a solid dose of cognitive behavioural therapy with, possibly, a dash of graded exercise thrown in for good measure.

Nowhere is that line of thinking more obvious, and sometimes more damaging, than when we consider the growing number of cases of children with ME. Here I must declare an interest. My youngest son Christopher, aged 15, having shown signs of a lack of energy for some years, especially when something extra occurred on top of his normal routine, virtually collapsed on 29 December 2000. He became acutely light-sensitive; his sleep pattern altered alarmingly; his physical energy almost disappeared; and his mental energy did disappear. This was a boy who loved school, who was doing very well academically and who, two summers ago, was on the verge of playing cricket for Scotland at under-

15 level. Today, he would have trouble holding a bat aloft for more than a few seconds and although he might manage to walk the length of a cricket pitch, he certainly could not run it.

Medical opinion suggested that we give it six months to see whether the condition would clear up and also suggested a visit to the psychiatrist. Those are two phrases with which people in the public gallery who suffer will be all too familiar. [Applause.]