On November 28th, 2018, the Oireachtas Joint Committee on Health, heard evidence from patients, patient advocates and professionals about Lyme disease. The Infectious Disease Society of Ireland (IDSI), submitted a statement authored by twenty eight of its members.
Vector-borne Infection – Research, Analysis, Strategy (VIRAS) has written an excellent and detailed response to the IDSI challenging many points, this can be viewed at –
A copy of the IDSI statement ‘had not been provided to Dr John Lambert, who gave evidence in person at the hearing, even though he is a member of the IDSI. Dr Lambert is knowledgeable and experienced regarding Lyme borreliosis and its coinfections, having had years of first-hand experience in diagnosing and treating patients. This exclusion was discourteous – to put it mildly.
Before reading from sections of the IDSI statement during the hearing, Senator Colm Burke remarked, “Other than the Chairperson, none of us are qualified medical practitioners, so we have to rely on advice given to us by medical practitioners.”
This statement had implications for those providing evidence to the committee, especially those who are ‘qualified medical practitioners’. Evidence should provide government committees with information which they can weigh to inform policy and professional witnesses have an obligation to give evidence which is reliable and balanced.
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The IDSI statement showed that the authors had adopted wholesale, the Infectious Disease Society of America (IDSA) position on Lyme disease. The IDSI statement endorsed the outdated IDSA guidelines and repeated IDSA opinions on important aspects of the disease and patient care.
When second-hand opinions are submitted as evidence, the onus to verify the reliability of those opinions rests with the witnesses. As Senator Burke’s comment made clear, it was not for the committee to discern the veracity of the evidence because, “we have to rely on advice given to us by medical practitioners”. Therefore the twenty eight authors of the IDSI statement were severally responsible for verifying the opinions which they submitted as evidence to the committee.
The following quotes are from the IDSI Statement to the Health Committee which were presented as bullet-points in the Introduction section of the document.
“We seek to ensure that all patients under our care, including those with Lyme disease, receive the highest quality of evidence based care”
“Evidence based care” does not exist for Lyme borreliosis. The National Institute for Clinical and Care Excellence (NICE – England) guideline for Lyme disease was published on April 11th 2018. The development of the guideline included a comprehensive literature review. Published research was rated according to its quality and risk of bias. NICE found that almost every piece of evidence was of ‘low’ or ‘very low quality’ or at ‘high’ or ‘very high’ risk of bias. NICE found no good quality evidence to inform any aspect of patient care. See Table 1 for the source and ratings of evidence used for various sections of the guideline.
It is misleading for the authors of the IDSI statement to claim that they provide, “the highest quality of evidence based care”, because there is no good quality evidence available – not that NICE with all their resources could discover. In the absence of any good evidence, the NICE guideline committee made recommendations “Based on the experience and opinion of the Guideline Committee”. One problem with opinions is that they could be swayed by the influence of vested interests. These interests could include associations with patent holders, vaccine developers, test-kit manufacturers and investors, research sponsors and funding, medical insurance and reinsurance companies. The value to interested groups in controlling the narrative and perceptions around Lyme borreliosis, could run into billions of dollars over time. In view of the interests involved, uncritical adoption of opinions which could be influenced by these sources would be a dereliction of the duty that doctors owe to their patients.”
I don’t propose to copy and paste the whole VIRAS response as the link to the original is provided above and below. It is full of very interesting points, with references, that are frequently overlooked or ignored by Infectious Diseases Consultants and doctors who are all too happy to parrot the outdated IDSA guidelines. One of those is the misuse of the term (PTLDS) Post Treatment Lyme Disease Syndrome – who decides when testing is reliable, when treatment is sufficient, and whether patients are sick? are questions as patients we often ask.
I was particularly pleased to read VIRAS response “We can assuage the IDSI’s concerns about “non-accredited diagnostics” because there is no such thing. It is laboratories which gain accreditation to perform a test, if they have demonstrated that they can manage the test materials and protocol properly. This does not validate or make any judgement about the quality or accuracy of a test – only the competency of the laboratory to follow procedures.
On the topic of “unvalidated, exploratory diagnostics”, it appears that the authors of the IDSI statement are unaware that the two-tier (ELISA, Western Blot) test is not a validated diagnostic protocol and was not designed to be used as such. The two tier test is hopelessly insensitive. E.g., Cook and Puri (2017) report that two-tier Lyme borreliosis testing produces around 500 times more false-negative results than test protocols for HIV. The company which supplies test kits to the Lyme borreliosis Reference Laboratory for England, published figures showing that Two-tier testing had only 55.3% sensitivity for ‘all Lyme disease patients’ and it detected only 41% of culture-positive patients.” (read on)
VIRAS also propose a little research experiment the IDSI could do to try and solve some of the controversy.
Joanne Drayson was bitten by a tick whilst walking her dog in the woods in Guildford, UK in 2003 and had two further tick bites in 2005. She developed Erythema migrans rashes on all three bites but did not know the significance at that time of the rashes nor did the doctor she saw in 2005. She became sick with a summer flu unlike any other she had ever experienced and although that passed within a week, it left her with weakness in her upper arms and upper legs, and joint pain which migrated throughout her body, affecting every joint. It took 5 doctors, 3 rheumatologists and 4 years for her to be diagnosd with Lyme disease, after previous diagnoses of Fibromyalgia, ME/CFS, Musculoskeletal Disease and Polymyalgia Rheumatica, for which she was given 20 months of high dose steroids. Joanne was retired on ill Health Grounds from the Civil Service. She significantly regained her health after long- term combination pulsed antibiotic therapy. Fifteen years after her diagnosis she still occasionally relapses but responds well to a short course of antibiotics. She now maintains a blog called: https://lookingatlyme.blogspot.com.