Lyme Disease and ME/CFS – according to the Chief Medical Officer

The Chief Medical Officer’s Autumn Update, sent out to all doctors in England, has some comments on the misdiagnosis of Lyme disease. To read them, click here.

The section on Lyme disease testing from the CMO Update is reproduced below.

The ME Association has a patient information leaflet on Lyme disease, which can be ordered using the pdf order form on the MEA website.

The diagnosis of Lyme disease, and its overlap with ME/CFS, is also covered in section 6:3 of ‘ME/CFS/PVFS – An Exploration of the Key Clinical Issues’, which is published by The ME Association.

Testing for Lyme disease (from CMO Update, Autumn 2009)

Lyme disease, caused by Borrelia burgdorferi and transmitted by the bite of an infected tick, is the most significant vector-borne infection in the United Kingdom and continues to receive media attention. Cases occur predominantly during the late spring, early summer and autumn, during peak tick feeding season. High-risk areas for Lyme disease in the United Kingdom are the New Forest, Exmoor, woodland or heathland areas of southern England, the Lake District, the Scottish Highlands and Islands, the North York Moors, Thetford Forest and the South Downs. At least 15% to 20% of laboratory-confirmed infections are acquired abroad.

The Department of Health remains concerned about the growing number of patients, particularly those suffering from chronic conditions such as myalgic encephalopathy (ME) or chronic fatigue syndrome, who receive a false diagnosis of Lyme disease from private laboratories offering unvalidated tests that lack the sensitivity and specificity to detect B. burgdorferi. A report of the Department’s investigation into the use of such tests in the diagnosis of Lyme disease is available at 89/17/04138917.pdf

Misinformation about Lyme disease is readily available to patients via the internet and can lead them to seek inappropriate diagnosis and treatment.

Comprehensive guidelines for clinicians on the diagnosis and treatment of Lyme disease are published on the Health Protection Agency’s (HPA) website. The HPA’s Lyme Borreliosis Specialist Reference Unit in Southampton provides validated tests for the NHS that comply with internationally agreed criteria for the detection of B. burgdorferi. Those claiming to have chronic Lyme disease’ or who believe it to be the cause of their chronic condition can be diagnosed definitively through using the HPA’s tests.

Lyme disease is usually treated effectively by a short course of antibiotics; however, in a small number of cases, if left undiagnosed for a long period, Lyme disease can be difficult to treat. There is no biological evidence of symptomatic chronic Lyme disease amongst those who have received the recommended treatment regimen.

Clinicians can contact the HPA’s Lyme Borreliosis Specialist Reference Unit to discuss the diagnosis of patients with difficult clinical presentations:

HPA lyme Borreliosis Specialist Reference Unit Southampton Laboratory Level B South Laboratory Block Southampton General Hospital Southampton SO16 6YD tel: 023 8079 6408

National Travel Health Network and Centre fact sheet on Lyme Disease
Health Protection Agency page on Lyme Disease


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