E2 ModerateModerate confidencePEM not requiredCross-SectionalPeer-reviewedReviewed
Standard · 3 min
Lyme disease in a British referral clinic.
Cottle, L E, Mekonnen, E, Beadsworth, M B J et al. · QJM : monthly journal of the Association of Physicians · 2012 · DOI
Quick Summary
This UK study looked at 115 patients who were referred to a specialist clinic because doctors suspected they had Lyme disease. The researchers found that only 23% actually had Lyme disease, while about one-third had ME/CFS instead. Importantly, some ME/CFS patients had been incorrectly told they had Lyme disease by non-specialist doctors, leading them to take unnecessary antibiotics.
Why It Matters
This study highlights a critical diagnostic problem: ME/CFS patients are being misdiagnosed with Lyme disease in non-specialist settings, resulting in unnecessary antibiotic treatment and delayed appropriate management. The data provide evidence that ME/CFS and Lyme disease are being conflated despite distinct diagnostic criteria, which has direct implications for patient care pathways and treatment access.
Observed Findings
Only 23% (27/115) of patients referred with suspected Lyme disease were confirmed to have the condition.
33% (38/115) of referred patients received a diagnosis of ME/CFS.
45% (17/38) of patients diagnosed with CFS had been previously misdiagnosed as having Lyme disease by non-NHS practitioners.
At least 53 unnecessary antibiotic courses were given by non-NHS practitioners and 21 by NHS practitioners.
33% (38/115) of referred patients received no specific diagnosis.
Inferred Conclusions
Lyme disease is significantly over-diagnosed by non-specialist practitioners, reflecting difficulties in clinical and laboratory diagnosis.
ME/CFS patients are particularly vulnerable to misdiagnosis as Lyme disease in private non-NHS settings.
Non-NHS practitioners prescribed unnecessary antibiotics more frequently than NHS practitioners, suggesting variable diagnostic standards outside the NHS.
Improved specialist referral pathways and diagnostic standardisation could reduce misdiagnosis and inappropriate treatment of both conditions.
Remaining Questions
What are the specific diagnostic criteria and testing methods used by non-NHS practitioners that led to over-diagnosis of Lyme disease?
What This Study Does Not Prove
This study does not prove that Lyme disease never causes ME/CFS-like symptoms, nor does it establish that antibiotics are never appropriate for any of these patients. Being a retrospective case note review, it cannot determine causality or establish whether misdiagnosed patients experienced harm from delayed appropriate care. The findings are specific to one UK region and may not generalise to other healthcare systems.
About the PEM badge: “PEM required” means post-exertional malaise was an explicit required diagnostic criterion for participant inclusion in this study — not that PEM was studied, observed, or discussed. Studies using criteria that do not require PEM (e.g. Fukuda, Oxford) are tagged “PEM not required”. How the atlas works →
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