IDSA Lyme Guidelines Panel acted improperly

May 2008
Lyme Disease Action welcomes Connecticut Attorney General’s Investigation of official guidelines on Lyme disease.

Guidelines on Lyme disease published in 2006 by the Infectious Diseases Society of America (IDSA) are taken by doctors in the UK to be best practice for treating patients with Lyme and are promoted by the UK’s Health Protection Agency (HPA). The Attorney General of Connecticut, Richard
Blumenthal, has published findings that reveal serious flaws in the process by which these guidelines for doctors treating Lyme disease were compiled. (1)

In the UK, where the Health Protection Agency and the NHS have placed a great deal of reliance upon the IDSA guidelines, it is likely that many patients have suffered as a result. Mr. Blumenthal said “My office uncovered undisclosed financial interests held by several of the most
powerful IDSA panelists. The IDSA’s guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.”

Patients in the UK, Europe and the US have long been saying that the disease affects them in a much more major and devastating way than the IDSA guidelines indicate. GPs in the UK have been led by these guidelines to deny that symptoms could be due to Lyme disease because the HPA advisers to
the NHS have insisted upon the veracity of the IDSA guidelines. The guidelines have made many assertions that do not match the ‘lived experience’ of having Lyme disease. (6)(9)

The Attorney General found that the IDSA process lacked important procedural safeguards and the IDSA blocked appointment of scientists and physicians with divergent views on chronic Lyme who sought to serve on the 2006 guidelines panel. Now patient hopes are high that the result of this
investigation will encourage the Department of Health to consider drawing up new UK guidelines to take account of European research and patient experience, instead of relying on the work of a flawed panel in the USA.

Lyme Disease Action has taken the lead in calling upon the Government to ensure that much needed UK clinical guidelines are produced. (2)(3)(4)(5)

Notes for Editors:

(1) Press release on the IDSA Lyme Guidelines from the Office of the Attorney General of Connecticut is available here:

(2) Lyme disease is endemic in virtually the whole of the UK and in Europe – it’s not just an American problem. Lyme disease has different variants in many parts of the world. The variants that occur in the UK and Europe are often different from the US ones. The variants can differ
in clinical presentation and that is why Lyme Disease Action (LDA) is calling on the Department of Health to put in place Clinical Guidelines specific to the UK. At the moment, UK doctors do not have this information.

(3) Lyme Disease Action is presenting a motion to Parliament through Julia Goldsworthy MP calling for UK specific guidelines to be compiled without delay.

“I first became aware of this serious health problem when I was contacted by constituents who had symptoms of Lyme disease, but who had been told they did not have this disease. I learned that there are difficulties surrounding this diagnosis and it should be diagnosed on clinical
symptoms. In the case of my constituents, treatment against Lyme disease was successful, enabling both to work and become active members of the community again. The Department of Health really needs to look at this issue again.”

Julia Goldsworthy MP

(4) Text of Parliamentary Motion:

Early Day Motion 958.

LYME DISEASE 19.02.2008

Goldsworthy, Julia

That this House acknowledges that Lyme disease, also known as Lyme borreliosis, is a serious and potentially chronic disease which is becoming more widespread across the United Kingdom; notes the growing body of evidence which suggests patients with the disease are frequently subject to
misdiagnosis and under-treatment; is concerned that the disease appears to be under-reported and inadequately investigated; and calls upon the Government to put in place a national strategy for reducing the growing toll of ill-health caused by this disease, including the development of clinical
guidelines specific to the UK for the use of all medical practitioners dealing with patients with this disease.

(5) In addition Lyme Disease Action has a No 10 Petition calling for UK Clinical Guidelines on the Prime Minister’s website.

(6) Lyme disease is caused by the bite of a tick infected with Borrelia bacteria that are injected into the bloodstream. Lyme disease can be difficult to diagnose and consequently many people with Lyme disease are not being recognized as having the disease. Lyme Disease Action is aware of
many cases where debilitating symptoms force patients to take long term sick leave which would not have been necessary had their illness been recognized.

Very unlucky patients can have an extremely bad outcome. This is not an illness to treat lightly as the recent tragic death leap of Ms Jan Linton whilst suffering the neuro-psychiatric effects of infection by Lyme bacteria serves to highlight.

Details about the death of Jan Linton available here:


(7) Cases of Lyme disease with a mild, uncomplicated primary infection, if treated in time, have a good prognosis. The majority of these people return to good health.

(8) The incidence of the disease has been increasing in recent years.

Ticks and the diseases they carry are becoming increasingly widespread in the United Kingdom. Official figures for numbers of laboratory-confirmed cases of Lyme disease in England and Wales were 500 in 2004 and 595 in 2005 and 768 in 2006. The Health Protection Agency (HPA) acknowledges that
these numbers do not equate to actual numbers of cases, which they estimate could be up to 3000 per annum. Lyme Disease Action has evidence that even these figures may be an underestimate.

(9) Early symptoms include feeling unwell and may include a spreading bull’s eye rash. Symptoms typically shown in chronic cases include: feeling unwell, flu-like symptoms, extreme tiredness, muscle pain, muscle weakness, joint pain, upset digestive system, headache, involvement of the
nervous system, including the brain and a great variety of other symptoms

(10) Spokespeople are available, please contact Stephanie Woodcock on 01326 375419 or Katy Weston on 0208 279 0378.
Or email contact can be made through LDA Lobby team:

(11) Lyme Disease Action – Striving for prevention and treatment of Lyme Disease and associated tick-borne diseases.