Autumn Updates 2013
*Newly Added 15th October 2013* –
notes of the PHE Meeting mentioned below are now available as follows:
Please note that the slides file is very large & may take some time to download. After reading hit the back button to come back to us 😉
For Public Health England’s review go to: conference wrap up
Open Meeting to be held in London, UK
On Wednesday October 9th 2013 Public Health England will be holding their first open meeting on Lyme Disease. Set to attract patients, scientists, reporters, clinicians & support groups there will be many topics covered on the day from testing, epidemiology through to research. Lyme & ME advocate Countess of Mar will be opening the event followed by talks by UK Lyme charities Lyme Disease Action & BADA UK. This is planned to be the first of many meetings, proof that Lyme isn’t so easy to diagnose & treat after all? Also being discussed will be the new Lyme clinic set to open in Winchester.
Per the PHE conference web page ‘Public Health England (PHE) conference on Lyme disease will provide an opportunity to discuss the latest research and developments in the field of Lyme disease, an infectious disease that can lead to very serious health problems, if left untreated. This conference will provide an opportunity for partners from a wide range of disciplines to work together to explore patients’ needs, and discuss issues ranging from long-term symptoms and infections of the nervous system, to testing methodologies.’
For more details click here for the day’s agenda
Patients who are members of a Lyme UK Discussion Group are worried that patients may fall into the ‘mentally ill’ category. I guess that’s no surprise following a meeting held at Public Health England where patients with ‘unprovable symptoms’ will be offered ‘disengagement strategies’. Simon Wessley will be involved in a new guideline for Lyme disease patient management, which leads us back to the NICE guidelines for ME/CFS where ongoing symptoms are put down as of mental origin. Until Lyme tests can be proven 100% accurate I would say it is too early to claim that sero negative patients (particularly those who did report lyme rashes, tick bites & symptoms following a tick bite) are mentally unwell.
http://www.hse.gov.uk/aboutus/meetings/committees/acdp/161012/acdp_99_p62.pdf (PDF download – hit the back button to return to the page!)
Members of the discussion group have put forward a large selection of questions to the RIPL Lyme testing labs & Dr Dryden of the new Lyme disease clinic. With permission I have uploaded a copy of the questions asked, this is for personal download only & please not for onward distribution.
Patients concerns – GROUP QUESTIONS FOR PHE CONFERENCE
(PDF download – hit the back button to return to the page!)
Lyme Research UK & Ireland publishes survey results
In collaboration with Tick Talk Ireland surveys were issued to patients by social research team Lyme Research UK & Ireland to find more about their experiences with health care in the NHS & Irish HSE with regards to acute & chronic Lyme disease. Both sero positive & sero negative cases were recorded. Lyme is mostly a clinical diagnosis supported by lab tests however negatives cannot be used to rule out a diagnosis as antibiotics & the state of the immune system have been known to affect results, aswell as the strain of borrelia being tested. Interestingly even patients testing positive are finding problems accessing treatment. This is most likely compounded by the differences of opinion between US health organisations IDSA & ILADS on how best to treat Lyme patients. Consultants prefer to err on the side of caution & offer minimum treatment to a patient, being told often that IV antibiotics for example would cause deaths in patients or that too long a treatment orally would cause complications with gut health. Although both scenarios are true in a subset of patients, patients can be rendered very sick by under treating them or not treating them at all. At the Irish Lyme disease conference June 2012 lead researcher Kate Bloor reported some of the findings of the patient survey.
The final written report, with statistics, is now available for download: Examining the Gap
ILADS conf US
International Lyme & Associated Diseases organisation will be holding their annual conference at San Diego, California 18-20 October. Next years conference in Europe has been set to be held in Augsburg Germany between April 25-26 2014.