SNAKES AND LADDERS – SNAP – EMPATHY AND COMPASSION…..

In the press recently, titled Snakes and Ladders, Professor Garner has relayed his experiences of Covid-19. No doubt we all empathize completely, and wish him a speedy recovery. He also had a place of comparative ‘luxury’ where, on the BMJ blog site, he was able to tell his important story. Conversely, if he were sat in front of his GP, his GP would not be allowed enough time to listen to all he had to say and make a suitable diagnosis, or definite plan for recovery. CFS or ME would be mooted, and as they are only descriptions and not a definitive diagnosis, it would mean a dead end as far any useful treatment. The symptoms that he and many others describe would be judged as being ‘too varied’. Multitudes of patients have witnessed their overworked GP being expected to make life changing judgments in the ten minutes allocated to each patient, with 20 minutes allowed only when particularly requested beforehand. Life changing, because in reality that is precisely what happens. It is the job of a physician to interpret for medical purposes, what a patient is saying, that interpretation is then added to medical records, for life! With the best will in the world, those 10 minute interpretations are often woefully lacking in reality, often perpetuated and as accurate as Chinese Whisper. When a physician or scientific researcher experiences an illness from ‘the inside’ rather than from a detached clinical or research setting, that position, hopefully, has to be one of the most important aspects in driving medical advancements. The validity and opportunity of shared personal experiences from...

THE COUNTESS OF MAR

Margaret of Mar is the 31st Countess of Mar, our oldest peerage, and has been a member of the House of Lords since 1975. When the House of Lords act was passed in 1999 to restrict the number of hereditary peers, Lady Mar was elected to the new House receiving the highest number of votes in support. She has been one of the most active members of the House of Lords and in addition to her political work has been Chairman, President and Patron of many groups including Gulf Veterans Association, Environmental Medicine Foundation, Elderly Accommodation Council and founder of Forward-ME which works with many charities related to chronic fatigue syndrome and myalgic encephalomyelitis, ME. Her extensive work related to organophosphates contributed to most of these chemicals being banned in the UK, and this work has expanded to bring attention to the risks to airline staff from aircraft engine fumes A huge effort with many difficulties has been associated with her work in support of patients with a diagnosis of ME/CFS. It had been a battle to expose the failure of the mainline treatments used by the NHS for these conditions such as talking therapy and exercise regimes. In addition, Lady Mar has taken on a major roll supporting patients with the often devastating tick-borne illnesses. This has involved direct work supporting, and as advocate for patients, leading to extensive work with the Health Protection Agency (now Public Health England) and the Department of Health. After raising many patient issues in the House of Lords she engaged directly with these organisations starting in 2012 resulting in specific action plans...

Crypto-Infections Conference 2020

  The 2nd European Crypto-Infections Conference is being held in Dublin, Ireland on 27th-28th March 2020, looking behind the science of Lyme Disease and co-infections. Crypto-infections, which include tick- borne bacterial pathogens and others, are well recognised as a significant burden of disease in both human and animal hosts. However, much remains to be done to further diagnose, understand the underlying pathogenesis, and optimally treat these infections. This conference will bring together a wide range of scientists, both in human and veterinary medicine and in other disciplines dealing with these infections, to share their current knowledge of these infections and to develop a ‘blueprint’ to progress our study of these infections. ​Friday 27th March 2020: 13:00 – 18:25 Saturday 28th March 2020: 08:00 – 16:00 Location: Catherine McAuley Centre, 21 Nelson Street, Dublin 7, Ireland Cost: €100 (incl. dinner on Friday, lunch on Saturday) Target Audience: The conference is designed for research PhDs, scientists, medical doctors, and other medical professionals in appropriate fields. In addition, the general public with an interest in these topics are also encouraged to attend. To register, please complete the form at https://www.iddoctor.info/crypto-infections-conference Following on from a very successful 2019 conference, this will be one not to miss.  ...

Chronic Lyme Disease: An Evidence-Based Definition by the ILADS Working Group

Abstract Objective: Chronic Lyme disease has been a poorly defined term and often dismissed as a fictitious entity. In this paper, the International Lyme and Associated Diseases Society (ILADS) provides its evidence-based definition of chronic Lyme disease. Definition: ILADS defines chronic Lyme disease (CLD) as a multisystem illness with a wide range of symptoms and/or signs that are either continuously or intermittently present for a minimum of six months. The illness is the result of an active and ongoing infection by any of several pathogenic members of the Borrelia burgdorferi sensu lato complex (Bbsl). The infection has variable latency periods and signs and symptoms may wax, wane and migrate. CLD has two subcategories, CLD, untreated (CLD-U) and CLD, previously treated (CLD-PT). The latter requires that CLD manifestations persist or recur following treatment and are present continuously or in a relapsing/remitting pattern for a duration of six months or more. Methods: Systematic review of over 250 peer reviewed papers in the international literature to characterize the clinical spectrum of CLD-U and CLD-PT. Conclusion: This evidence-based definition of chronic Lyme disease clarifies the term’s meaning and the literature review validates that chronic and ongoing Bbsl infections can result in chronic disease. Use of this CLD definition will promote a better understanding of the infection and facilitate future research of this infection.  ...

WORKSHOP on Lyme and Tick-borne diseases

HPRU-EZI/ RIPL/ NHS   Lyme and tick-borne disease research in the UK: A workshop, addressing the scientific uncertainties   On Friday, 22nd November, 2019, at a tick-borne disease workshop in Liverpool, we were invited along with other charities and patient groups to attend and contribute orally in a ten minute slot, our top 5 research suggestions.   This meeting was held jointly by: Health Protection Research Unit in Emerging and Zoonotic Infections (HPRU-EZI) Public Health England (RIPL) The National Institute for Health and Care Excellence (NICE) Liverpool School of Tropical Medicine (LTSM) Health Protection Scotland (HPS)   We were very pleased to be given the opportunity to present our top research priorities, plus other important points needing equal and urgent consideration and attention.   We are pleased to be able to inform you that the report is now publicly available through the NIHR HPRU EZI website at the following link: http://www.hpruezi.nihr.ac.uk/about-us/news-and-events/lyme-and-tick-borne-disease-research-in-the-uk/    We would like it to be noted that had we been given the opportunity to present, as seems to be the norm for most other illnesses, the 10 top research priorities, then the subject of tick related ecology would have been included. However,  as we were limited to just 5 top research priorities, we focused on what we felt were the most pertinent from the perspectives of useful inclusion for medical research.   Our five research priorities presented were:- What is the seroprevalence of Borrelia infections and other tick-borne diseases in cohorts of the general population and at-risk occupations and lifestyles.  What are the test methods that have the highest sensitivity and specificity for all stages of...