Patients with a self diagnosis of myalgic encephalomyelitis

Comment on: Patients with a self diagnosis of myalgic encephalomyelitis. [BMJ. 1995]

 

EDITOR,-S J Hurel and colleagues should have checked their facts more thoroughly before making such a generalised attack on the content of literature produced by the two support groups for patients with myalgic encephalomyelitis (ME).

The ME Association does not believe that candida albicans is involved in the pathogenesis of the condition. Our booklet Guidelines for the Care of Patients states that “no reliable scientific evidence has ever been published to support such a link” and that “consequently, anti-candida regimes involving highly restricted diets, probiotics and antifungal drugs cannot be recommended.”2 Equally, we repeatedly warn our members about the serious dangers of colonic cleansing (particularly in relation to the risk of unhygienic operators transferring gastrointestinal pathogens) and advise extreme caution when consulting herbalists or buying over the counter herbal remedies. If we really were producing literature that contained pseudoscientific nonsense and advocated dubious forms of alternative therapy I doubt whether the Department of Health would be providing funding to expand the work of our information department.

Had the authors checked with our booklet they would have found that we are not in favour of self diagnosis and strongly recommend consideration of nearly 50 physical and psychological conditions that can present with chronic fatigue as the principal clinical feature. In this context pituitary tumours are specifically mentioned as we are aware of at least two other cases similar to that reported by Hurel and colleagues in which misdiagnosis occurred. Furthermore, our literature emphasises that “significant or progressive weight loss is not a normal feature of ME, and where it occurs alternative explanations (eg hormonal) should always be excluded.”

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2550999/pdf/bmj00614-0065a.pdf

 

Source: Shepherd C. Patients with a self diagnosis of myalgic encephalomyelitis. BMJ. 1995 Oct 14;311(7011):1021. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2550999/pdf/bmj00614-0065a.pdf (Full comment)

 

Chronic fatigue syndrome

Comment on: Chronic fatigue syndrome: a follow up study. [J Neurol Neurosurg Psychiatry. 1994]

 

Chronic fatigue syndrome: a follow up study by Bonner et al’ reported that 47 patients initially diagnosed with “chronic fatigue” were contacted for follow up four years later. The authors indicated that “These patients were initially assessed before the current criteria for chronic fatigue syndrome became available, but most would have satisfied the criteria retrospectively” (p 617). At the outset, all patients were offered cognitive behavioural treatment and some were offered antidepressant medications. Each patient then made a decision to either undergo or decline cognitive behavioural treatment. Four years later, those patients who reported functional improvement were more likely to have elected to receive the cognitive behavioural treatment. Additionally, patients in the group that did not report any functional improvement were more likely to score higher on measures of depression.

The US Centers for Disease Control and Prevention (CDC) case definition,2 the proposed revisions to the CDC case definition,3 and the guidelines for research set forth by Sharpe et al4 were cited, but the researchers did not make it clear as to which criteria were used to diagnose which patients. Thus it is unknown whether uniform criteria were applied to diagnose all patients at the outset. Moreover, the authors did not specify just how many of the initial 47 patients met any of the cited criteria for chronic fatigue syndrome, as opposed to chronic fatigue. In short, they did not differentiate the exact number of chronic fatigue syndrome v chronic fatigue cases.

Only 29 of the original 47 patients (62%) agreed to be interviewed for the follow up. Thus 18 (38%) of the original patients were not included in the outcome data, where 10 subjects reported little or no improvement and 19 subjects reported improvement or recovery. The authors acknowledged that the small patient sample size constituted a methodological shortcoming, but nevertheless concluded “that there is a strong association between successful completion of [cognitive] treatment and the absence of functional disability at the four year follow up” (p 620). They further suggest that costs associated with long term disability could be reduced by the utilisation of cognitive therapy in the treatment of chronic fatigue syndrome. We would like to emphasise that the small patient sample size, together with the lack of availability of almost 40% of the initial patients for interview at follow up, make such conclusions highly inappropriate.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1073573/pdf/jnnpsyc00030-0116.pdf

 

Source: Lipkin DM, Robin R, Vasquez L, Plioplys AV, Plioplys S. Chronic fatigue syndrome. J Neurol Neurosurg Psychiatry. 1995 Jun;58(6):764-5. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1073573/

 

Influence of patients’ expectations on disease

EDITOR,-Michael Loudon continues the debate about the contribution of psychological factors to the development of the chronic fatigue syndrome and the influence of patients’ expectations on the prognosis.

I developed glandular fever over a year ago. For three months earlier this year I had considerable but variable difficulty in getting out of bed in the morning, muscle “woodenness” all over, and wobbly legs in association with a still positive PaulBunnell test. Normal activities have not been a problem for some time now, but I am still struggling to resume sporting activities at something like my previous level.

Why do we seek to make general statements? It is so easy to illustrate the futility of trying to generalise. For example, the teenage son of one of my colleagues on the nursing staff at our hospice died of hepatitis arising from the early stages of glandular fever, despite his transfer to a liver unit. By contrast, I had a normal appetite from the beginning of my illness and no abdominal tenderness. If this lad died of hepatitis and I had no hepatitis at all, does anyone suggest that he did not have a helpful attitude to his illness, while I did to mine? I think not. Why not? Because when we understand and can measure we accept that there is a range of organically based illness.

Surely the reason why there is scepticism about whether the chronic fatigue syndrome has an organic basis is because of the implications for long term absenteeism from work as well as the cost to the country in benefits.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2541947/pdf/bmj00463-0066e.pdf

 

Source: Ife S. Influence of patients’ expectations on disease. BMJ. 1994 Oct 29;309(6962):1160-1. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2541947/

 

Chronic fatigue syndrome. Role of psychological factors overemphasised

Comment in: Chronic fatigue syndrome and myalgic encephalomyelitis. [BMJ. 1994]

Comment on: Longitudinal study of outcome of chronic fatigue syndrome. [BMJ. 1994]

 

Editor,-In concluding that psychological factors are more important than immunological ones in determining the long term outcome of myalgic encephalomyelitis or the chronic fatigue syndrome Andrew Wilson and colleagues seem overconfident of the validity of their findings. Although the use of self rated measures of outcome is necessary, the validity of the investigators’ treatment of such data is questionable. For example, the five point self rated global illness outcome was dichotomised such that an original response of “not improved at all” was recorded to “worsened”-a decision the investigators fail to justify. It is also dubious whether patients’ recall of their own premorbid psychological state is accurate, given that the average onset was 9 years before recall and the finding that memory of an event is affected by subsequent events.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2540179/pdf/bmj00440-0053a.pdf

 

Source: Blatch C, Blatt T. Chronic fatigue syndrome. Role of psychological factors overemphasised. BMJ. 1994 May 14;308(6939):1297. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2540179/