The West Lothian Bulletin, a free paper circulated to all West Lothian residents by the local council has an article regarding the partnership between LRC and West Lothian Council and Gus’s charity bike ride. Please have a look, as it also includes really good awareness advice.
From: West Lothian Bulletin (Spring 2022)
(Article can be found on Page 18)
After a scientific review process that took multiple years and documented testimony from patients and experts, it’s time to celebrate a milestone for the Lyme community: The new International Classification of Diseases (ICD-11) codes have taken effect as of January 1, 2022. These codes include important updates that recognize persistent and congenital Lyme disease, along with other improvements.
Examples include (but are not limited to) Rash at site of bite or on other parts of your body,
unexplained hair loss, tiredness, aches and loss of energy etc.
What is the Living Well programme?
Examples include (but are not limited to) joint or muscle pain, brain fog, fatigue, pain, anxiety, low mood, chest pain etc.
From: Autoimmune response found in many with COVID-19 | National Institutes of Health (NIH)
Are our current #Lyme treatment protocols all wrong? Read the new evidence on Lyme persistence beyond 28-days of doxycycline.
In the free medical education course, “Serologic testing in Lyme disease,” Elizabeth L. Maloney, MD, a Minnesota family physician and tick-borne disease educator, reviews published studies that evaluate current Lyme disease tests and discusses how these tests should be used in diagnosing patients.
Retraction request cites harm to pregnant women and children
A useful resource site we came across recently can be found here:
Montecalvo Platform for Tick-Borne Illness Medical Education
Invisible International: Montecalvo Foundation
About the platform:
TICK-BORNE INFECTION AT RISK GROUPS
Targeting of Personal Protective Advice
The following is a breakdown of potential at-risk groups and target markets for personal
protective messaging. This a general guide and not exhaustive.
The pdf contents includes:
FRAMEWORKS FOR CONSIDERING POTENTIAL RISK
INDIVIDUAL/PERSONAL ‘TARGET MARKET’
Lyme Resource Centre now sells a range of birthday, general and Christmas charity cards. Pop over to our to our online card store and find something to send to family and friends. As well as being attractive, they help us raise awareness.
An investigational polymerase chain reaction (PCR) test that detects the presence of a viral gene in Lyme disease–causing bacteria can distinguish between early and late infection, according to the results of a study that the authors describe as "systematic and comprehensive."
At the end of March 2021, we marked the second year anniversary of our charity. We reflect with pride on what have we achieved so far.
Highlights of 2020-21
Lyme Resource Centre's second year has seen more efforts to raise awareness of all tick-borne diseases, including Lyme disease. This year we have had a particular focus on professional education.
A huge thank you to Angus Walker! In the year he ticks off hitting the ripe old age of 40 he's raising money for Lyme Resource Centre by aiming to ride at least 4040km throughout 2021 as part of his #TickOff4040Challenge!
As of 16th November 2020, all eight insurers have now settled in the US lawsuit on Lyme disease, Torrey vs. IDSA et al. The lawsuit was brought by 24 Lyme disease patients in the US against the Infectious Diseases Society of America (IDSA), 8 insurance companies, and 6 physicians involved in writing and enforcing the IDSA guidelines.
The suit focuses on the denial of longer courses of antibiotics to patients under the IDSA guidelines, which rigidly hold that 10-to-28-day courses almost always eliminate Lyme infection.
Public Health England have announced the diagnosis of a case of human babesiosis and a probable case of tick-borne encephalitis (TBE) in England.
On 21st March 2020, we mark the first year anniversary of our charity. We reflect with pride on what have we achieved so far.
Justin Bieber has revealed that he is suffering from Lyme disease (https://www.bbc.co.uk/news/entertainment-arts-51041033). His announcement comes in the wake of a number of developments that are changing attitudes towards tick-borne diseases in the US. Lyme disease is six times more prevalent than HIV, yet until now the Lyme budget of the US National Institutes of Health (NIH) has been less than 1% that of HIV.
The Telegraph reports on a deadly new tick-borne virus. It is not present in the UK, but it is spreading rapidly throughout Asia.
The new virus – severe fever with thrombocytopenia syndrome (SFTS) – is spread by tick bites, has a fatality rate around 30 per cent, no effective treatment, and should be treated as a biosafety level three pathogen, on a par with diseases such as Ebola.
On Friday 22nd November, a patient representative from Lyme Resource Centre attended a meeting in Liverpool hosted by the National Institute for Health Research and involving Public Health England, Liverpool University Institute of Infection and Global Health, and Liverpool School of Tropical Medicine. It also included sessions lead by representatives of the Scottish Lyme Disease and Tick-borne Infections Reference Laboratory (SLDTRL) based at Raigmore Hospital and the Health Protection Scotland Lyme Disease sub-group.
Wednesday 20th November 2019
Lyme Resource Centre will be urging the authorities to step up their efforts to address tick-borne diseases at a workshop, "Lyme and tick-borne disease research in the UK: addressing the scientific uncertainties", to be held at the National Institute for Health Research on 22nd November 2019. We will be providing evidence of persistent Lyme disease infection and calling for acknowledgement of the complexities of Lyme disease and other tick-borne illnesses.
How one foundation assumed leadership in the fight against a fast growing health threat.
"It was 18 increasingly unpleasant months between Alex Cohen’s first symptom—a pain in the sole of her foot—and her diagnosis of Lyme disease. Along the way, she was told she had everything from lupus, fibromyalgia and multiple sclerosis to mercury poisoning from her fillings. 'I had none of the above,' she said. 'Finally, I met this doctor in New York who treated me for Lyme, and it was a new day.' That was about 12 years ago, but it wasn't the end of her journey with Lyme disease."
Public Health England have announced that Tick-borne encephalitis virus has been detected in ticks in the UK for the first time.
"Tick-borne encephalitis virus (TBEV) has been detected for the first time in ticks in the UK. The findings are part of ongoing research by Public Health England (PHE) and the Emerging and Zoonotic Infections National Institute for Health Research (NIHR) Health Protection Research Unit at the University of Liverpool."
The views represented at the Science Media Centre briefing on 9th October and reported on in an article in the BMJ are one extreme of a diverse range of views on Lyme disease. However, there is an ever-increasing body of science showing that Lyme disease is not rare, that the tests are unreliable, that chronic illness is common, and that it involves more than 'residual symptoms' and can be life-threatening.
"Fiona Stalker travels around Scotland to investigate the spread of Lyme disease. One tiny tick under the skin can cause chronic illness but GPs are often slow to diagnose and to give treatment. Fiona hears from sufferers who feel let down by the health service and asks what more can be done to combat this debilitating disease."
Tick-bites can lead to long term illnesses.
May is Lyme Disease Awareness Month and as ticks are most active from spring to autumn, it pays to know how to tackle them.
We are celebrating the launch of our charity. Lyme Resource Centre was registered as a Scottish Charitable Incorporated Organisation (SCIO) with OSCR, the Scottish Charity Regulator, on 21st March 2019. Irish registration is also intended.
