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

October 7, 2009

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

2 thoughts on “Lyme Disease and ME/CFS – according to the Chief Medical Officer”

  1. Veronica Di Grigoli

    The HPA no longer exists and Lyme disease testing is carried out on behalf of Public Health England by the Rare and Imported Pathogens Laboratory (for patients in England, Wales and Northern Ireland) and by the National Lyme Borreliosis Testing Laboratory at Raigmore Hospital (for patients in Scotland). The test kits they use for western blots have been independently verified by five scientific teams and they have a sensitivity of 57% at the best estimate and just 23% at the worst, which means blood infected with Lyme borreliosis that is tested using these kits stand a statistical probability of obtaining a negative result ranging from 43% to 77%. This is partly because of the limited native antigens in the test: there are 25 strains of Borrelia which cause Lyme borreliosis and the test kits currently used by these two testing laboratories only contain two of them, excluding the strain (Borrelia Garinii) which is proven to be the commonest strain in the United Kingdom.
    The charity I represent, Caudwell Lyme Disease, considers this an unacceptably high rate of false negatives and is currently in negotiation with Jeremy Hunt and Simon Stevens to campaign for a superior and more sensitive test.
    Public Health England has withdrawn the allegations made by HPA against foreign testing laboratories which use CE marked testing kits in formally accredited laboratories as unfounded. Therefore I request that you remove this misleading information from your website and provide more reliable information, which can be obtained from the following web page:
    You may also be interested to learn that in a survey of 500 Lyme disease patients, Caudwell Lyme Disease found that 47% of patients with Lyme disease confirmed by erythema migrans rash or positive serology had been given a diagnosis of Chronic Fatigue Syndrome by their doctor.

  2. My Endocrinologist at Southampton General sent my blood to be tested for Lyme disease I got sick in North America the test came back IGM Positive for Burgdorfi but remain IGG Negative he the asked the consultant Microbiologist about this testing his response was there is not

    enough evidence to say it is Lyme disease so I was more or less dismissed…I was never ever tested for babesiosis or bartonella donconi microti etc…I tested years back with Garh Nicolson Positive to Mycoplasma Fermentan plus I was also tested for C. Pneumonaie at Vanderbilt

    University in Nashville Tenn by Dr Chareles Startton to this day the NHS has not treated me at all I have told them countless times in the Emergency room at SGH their response was give me a simple round of Doxycycline…I plan on doing some Lyme Private tests in the UK soon &

    if Positive I will order my Antibiotics from India Pharmacy & start treating myself I have lost faith in the NHS entirely now I am told I have possible Ehlers Danlos Syndrome, again another Quack diagnosis label…How can anyone say there is no infection when the last guy I fought in

    Boxing is sick as well it is ludicrous I got sick over night I was 100% healthy before this torture came on abruptly & no I had no stress on my life I had the perfect life plus I was in the best pound for pound shape anybody in Boxing could ask for I was in with the best of the best &

    No I was never damaged in Boxing I have been damaged by these pathetic Governments who dismiss Millions who are now Sick & yes Dying…It better not be Lyme I will be back with huge lawsuits…I was told I have CFS or at one point suspicion of MS but that was ruled out, I had a

    pressure in my spine fluid over 500 it shot across the room Prednisone save my life but never recovered…Garth Nicolson said years ago he found 45% of the HIV AIDS Virus inside the Mycoplasma its funny now we never ever hear anymore about this supposedly biological

    warfare agent it has been kept entirely away from the Public after he was threatened by the establishment…

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