Chronic fatigue syndrome in children. All studies must be subjected to rigorous scrutiny

Editor—Over the years, the ME Association has noted that some of those writing in the BMJ make assumptions about the views of organisations concerned with myalgic encephalomyelitis. These assumptions concern the organisations’ views about the aetiology and treatment of the disease. We wish to put the record straight as regards the position of the ME Association. We do not regard the mind-body issue as clear cut. We accept that, as in any long term disabling illness, symptoms will include both physical and psychological components, and we make this clear in our literature. We find unacceptable the often voiced assumption that our views on aetiology and treatment are coloured by prejudice against psychological illness or a wish to stigmatise such illnesses as less valid than physical illness. All illness, whatever the cause, is legitimate, and patients with that illness are worthy of respect and acceptance.

You can read the rest of this article here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2127598/pdf/9361555.pdf

 

Source: Hume M. Chronic fatigue syndrome in children. All studies must be subjected to rigorous scrutiny. BMJ. 1997 Oct 11;315(7113):949. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2127598/

 

Chronic fatigue syndrome in children. Patient organisations are denied a voice

Comment on: Managing chronic fatigue syndrome in children. [BMJ. 1997]

 

Editor—Action for ME is one of the two patient support groups referred to in “editor’s choice” in the issue of 7 June. The organisation, which represents 8000 members, accepts that any illness can have both physical and psychological components. In fact, for the past five years it has offered psychological support in the form of professional telephone counselling, and our journal has carried numerous articles testifying to a more complex understanding than the editor implies.

What we have a problem with, however, is some medical journals’ overemphasis on psychological factors when they refer to myalgic encephalomyelitis. Provocative features about hysteria and wandering wombs have not helped.1 Because of the possibility of cognitive malfunction,2 we believe that getting better is more complex that letting go of “symptom dependency” and “therapeutic nihilism”—terms that are frequently used in research attempting to show that abnormalities are not components of a primary pathological process but are secondary to behavioural aspects of myalgic encephalomyelitis, such as reduced physical activity.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2127601/pdf/9361554.pdf

 

Source: Jacobs G. Chronic fatigue syndrome in children. Patient organisations are denied a voice. BMJ. 1997 Oct 11;315(7113):949. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2127601/

 

Chronic fatigue syndrome in children. Journal was wrong to criticise study in schoolchildren

Comment on: Managing chronic fatigue syndrome in children. [BMJ. 1997]

Editor—In his editorial on managing the chronic fatigue syndrome in children Harvey Marcovitch implies that a 37% response rate to our questionnaire about long term sickness absence in schools was poor and insufficiently explained, and he states that we overinterpreted the resulting data.1 2

You can read the full comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2127623/pdf/9361553.pdf

 

Source: Dowsett EG, Colby J. Chronic fatigue syndrome in children. Journal was wrong to criticise study in schoolchildren. BMJ. 1997 Oct 11;315(7113):949. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2127623/

 

Graded exercise in chronic fatigue syndrome. Chronic fatigue syndrome is heterogeneous condition

Comment on: Randomised controlled trial of graded exercise in patients with the chronic fatigue syndrome. [BMJ. 1997]

 

Editor—The study reported by Kathy Y Fulcher and Peter D White will provide new hope to many patients diagnosed as having the chronic fatigue syndrome.1 Before exercise regimens become the treatment of choice, however, it is worth noting that over two fifths of the patients in the study reported no or little improvement. It is a pity that the researchers did not compare those who were “very much better” with those who were not, in terms of variables such as the onset of illness (acute or gradual, history of infection) 2 and the presence of additional symptoms frequently associated with the syndrome—for example, cognitive difficulties, nausea, and malaise after exercise. This might have shown whether one particular subgroup fared better than another, allowing doctors to tailor their advice and further improve patients’ care.3

The possibility that subgroups may have different prognoses also deserves consideration. For instance, a recent study found that 70% of patients diagnosed as having epidemic neuromyasthenia recovered within two years.4 If two thirds of the subjects studied by Fulcher and White also had disease of acute onset linked to infection, one could argue that the exercise regimen reflected the natural course of the illness while the flexibility training made patients worse.

A final point concerns the 20 subjects taking full dose antidepressants. The authors do not specify why these drugs were being taken by people who did not have clinical depression or sleep disorders. Moreover, since many patients with the chronic fatigue syndrome cannot tolerate therapeutic doses of antidepressants,5 some of the reported fatigue and malaise may have been drug induced.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2127599/pdf/9361552.pdf

 

Source: Goudsmit EM. Graded exercise in chronic fatigue syndrome. Chronic fatigue syndrome is heterogeneous condition. BMJ. 1997 Oct 11;315(7113):948. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2127599/

 

Graded exercise in chronic fatigue syndrome. Patients were selected group

Comment on: Randomised controlled trial of graded exercise in patients with the chronic fatigue syndrome. [BMJ. 1997]

 

Editor—Kathy Y Fulcher and Peter D White conclude that their findings support the use of graded aerobic exercise in the management of the chronic fatigue syndrome.1 Those readers who delve no further than the abstract and key points may welcome this “take home message.”

Several flaws in the paper, however, make accurate interpretation of the findings difficult and greatly limit its applicability. Firstly, less than two fifths of those screened for the trial actually entered it. Many of those who did not enter it were excluded on the basis of current psychiatric disorder, even though the Oxford criteria used by the authors do not specifically exclude patients with anxiety and depression.2 Given that this is already a subgroup selected by their referral to psychiatric outpatient departments, to select out those with a current psychiatric disorder makes them an unusual group indeed.

Secondly, successful randomisation should make the intervention and control groups similar. Such comparability should enable the problem of confounders, known or unknown, to be accounted for. Evidence of the comparability of cases and controls should be presented.3 Age and sex are almost universal confounders. In this study one might also add body mass index, duration of illness, and even previous athletic training as other possible confounders. The paper does not break down the age and sex of the two groups to enable comparison.

Thirdly, the main outcome measure is the self rated clinical global impression change score. This score is a validated measure of overall change.4 However, the validity of the subsequent categorisation of patients into those with a score of 1 or 2 and those with a score of 3-7, and whether this was a post hoc categorisation, is not stated. A categorisation into 1-3 (all scores representing an improvement) and 4-7 (the rest) would not have produced a significant change. Numerous other physiological outcome measures are provided, but more clinically relevant would have been consultation rates, use of drug treatment, and time off work (time off work was measured only at one year, after the crossover). In short, for those considering the options for managing this condition, especially those who commission services, the message should be that we need more information before we can tell if graded exercise will help most patients with the chronic fatigue syndrome.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2127633/pdf/9361551.pdf

 

Source: Sadler M. Graded exercise in chronic fatigue syndrome. Patients were selected group. BMJ. 1997 Oct 11;315(7113):947-8. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2127633/

 

Graded exercise in chronic fatigue syndrome. Including patients who rated themselves as a little better would have altered results

Comment on:

Randomised controlled trial of graded exercise in patients with the chronic fatigue syndrome. [BMJ. 1997]

Managing chronic fatigue syndrome in children. [BMJ. 1997]

 

Editor—“Editor’s choice” in the issue of 7 June states, “we agree that myalgic encephalomyelitis (or chronic fatigue syndrome) is a serious condition” and “all conditions have a mental and physical component.” This is the stance of the patient organisations supporting patients with this condition. Unfortunately, some doctors have trivialised this illness; ridiculed patients and their supporters; and subjected a few of them, including children, to oppressive, perhaps even abusive, forms of treatment. Hopefully, this is now a thing of the past. We need, as Harvey Marcovitch says, to explore what might be done to help them.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2127632/pdf/9361550.pdf

 

Source: Franklin AJ. Graded exercise in chronic fatigue syndrome. Including patients who rated themselves as a little better would have altered results. BMJ. 1997 Oct 11;315(7113):947; author reply 948. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2127632/

 

Graded exercise in chronic fatigue syndrome. Patients should have initial period of rest before gradual increase in activity

Erratum in: BMJ 1997 Nov 1;315(7116):1165.

Comment on: Randomised controlled trial of graded exercise in patients with the chronic fatigue syndrome. [BMJ. 1997]

 

Editor—We remain firmly opposed to exercise programmes that encourage patients with the chronic fatigue syndrome to increase their levels of physical activity progressively without making allowance for fluctuating levels of disablement. Nevertheless, we welcome Kathy Y Fulcher and Peter D White’s finding that an individually tailored programme can produce benefits in a carefully selected subset.1 We have concerns, however, about the way in which these results have been oversimplified in the media and may now be put into practice by health professionals with no experience of this approach to management.

You can read the rest of this article here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2127628/pdf/9361549.pdf

 

Source: Shepherd C, Macintyre A. Graded exercise in chronic fatigue syndrome. Patients should have initial period of rest before gradual increase in activity. BMJ. 1997 Oct 11;315(7113):947; author reply 948. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2127628/

 

Disagreements still exist over the chronic fatigue syndrome

Editor—Although the ME Association welcomes the royal colleges’ unequivocal conclusion that the chronic fatigue syndrome is a genuine and disabling condition,1 we also agree that their report will “engender disagreement on both sides of the Atlantic.”2 We have no problem in accepting that the alternative name for the condition—myalgic encephalomyelitis (ME)—is pathologically incorrect, and this is a matter that we now intend to address. However, labels are important to patients as well as doctors, and support groups throughout the world are unanimous in their view that “chronic fatigue syndrome” is a totally inadequate way of describing the symptomatology and associated disability. The chronic fatigue syndrome may well become a dustbin diagnosis for anyone with chronic fatigue, and a new name that is acceptable to both doctors and patients clearly needs to be found.

You can read the full comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2125625/pdf/9006489.pdf

 

Source: Shepherd C. Disagreements still exist over the chronic fatigue syndrome. BMJ. 1997 Jan 11;314(7074):146. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2125625/pdf/9006489.pdf

 

Chronic fatigue syndrome

“Biopsychosocial approach” may be difficult in practice

This week a joint working group of the Royal Colleges of Physicians, Psychiatrists, and General Practitioners in Britain issued a report on chronic fatigue syndrome.’ The report constitutes, arguably, the finest contemporary position statement in the field, and physicians and patients are well advised to read it, but it is sure to engender disagreement on both sides of the Atlantic.

The term chronic fatigue syndrome is relatively new. It first appeared in the 1988 proposal by the United States Centers for Disease Control to formalise a working case definition for symptoms that had been variously named and attributed to numerous causes for over two centuries. Through field testing, the case definition was revised and simplified in 1994. In essence, it classifies a constellation of prolonged and debilitat ing symptoms as worthy of medical attention and study (see box). Related case criteria were developed by consensus at Oxford in 199 .4 Neither the American nor the Oxford criteria assume the syndrome to be a single nosological entity. As the royal colleges’ report concludes, the term chronic fatigue syndrome is appropriate because it carries none of the inaccurate aetiological implications of the alternative acronyms-myalgic encephalomyelitis, chronic fatigue syndrome, and immune dysfunction syndrome.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2359057/pdf/bmj00562-0007.pdf

 

Source: Straus SE. Chronic fatigue syndrome. BMJ. 1996 Oct 5;313(7061):831-2. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2359057/

 

Cognitive behaviour therapy for the chronic fatigue syndrome. Patients’ beliefs about their illness were probably not a major factor

Comment onCognitive behaviour therapy for the chronic fatigue syndrome: a randomized controlled trial. [BMJ. 1996]

 

EDITOR,-Michael Sharpe and colleagues’ study confirms that the best medical advice for patients with the chronic fatigue syndrome is not “nothing can be done” or that “the disease will burn itself out.”‘ The study produced improvement in 73% of the patients, which is comparable to the 80% improvement produced by my management techniques.2 3 Interestingly, my approach seems to be fundamentally different from that of Sharpe and colleagues.

You can read the full comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2350897/pdf/bmj00539-0053d.pdf

 

Source: Ho-Yen DO. Cognitive behaviour therapy for the chronic fatigue syndrome. Patients’ beliefs about their illness were probably not a major factor. BMJ. 1996 Apr 27;312(7038):1097-8. http://www.ncbi.nlm.nih.gov/pubmed/8616430