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Presenting the Petition to The Petitions Committee

Video: 

https://www.scottishparliament.tv/meeting/public-petitions-committee-september-14-2017?clip_start=10:25:38&clip_end=11:03:06

Scottish Parliament Debates/Presentations

S5M-04825: Alexander Burnett, Aberdeenshire West, Scottish Conservative and Unionist Party, Date Lodged: 22/03/2017 – Lyme Disease, The Need To Do More 

That the Parliament recognises that Lyme disease is affecting many people across Scotland, including in Aberdeenshire; considers that there is a lack of awareness and education to prevent further infections in 2017; notes calls for the issues surrounding diagnosis and treatment to be explored further; further notes calls for public education on the dangers of tick bites and for doctors to become better informed so that patients are not left undiagnosed, and notes the support for Lyme Disease UK’s campaign to help increase awareness of this disease.
https://www.parliament.scot/chamber-and-committees/votes-and-motions/S5M-04825

Holyrood debate on the motion (14th June 2017):

Video: https://www.scottishparliament.tv/meeting/lyme-disease-the-need-to-do-more-june-14-2017
Transcript: http://www.parliament.scot/parliamentarybusiness/report.aspx?r=11005&mode=html#iob_100589

A professional presentation to MSPs, Dr. Jack Lambert, May 2018

http://www.ticscotland.org.uk/lambert-201805

S6M-07769: Evelyn Tweed, Stirling, Scottish National Party, Date Lodged: 14/02/2023 – National Lyme Disease Awareness Month

That the Parliament acknowledges that May 2023 is National Lyme Disease Awareness Month; notes that Lyme disease is a bacterial infection spread to humans by infected ticks, which are tiny spider-like creatures found in woodland and moorland areas that feed on the blood of birds and mammals, including humans; understands that many people with early symptoms of Lyme disease develop a circular rash around the tick bite three to 30 days after being bitten, often described as looking like a bull’s eye on a dart board, whilst some people may develop several rashes in different parts of their body, and around one in three people will not develop a rash; further understands that some people with Lyme disease also have flu-like symptoms, including tiredness, muscle and joint pain, headaches, a high temperature, chills and neck stiffness; notes the calls encouraging anyone who has been bitten by a tick and develops a rash or flu-like symptoms to speak to their GP and tell them that they have been bitten by a tick; further notes, however, that diagnosing Lyme disease is often difficult as many of the symptoms are similar to other conditions; acknowledges that NHS Scotland advises that Lyme disease is treatable, however, that without treatment, more serious and longer-term symptoms may develop, including pain and swelling in joints, nerve problems, memory problems, difficulty concentrating and heart problems; understands that there is currently no vaccine available and that the best way to prevent Lyme disease is to adopt simple measures when in the countryside or near wildlife, including tucking trousers into socks and wearing insect repellent, and notes the calls encouraging anybody who is concerned that they have contracted Lyme disease to contact their GP and for everyone to take precautions when in the countryside.
https://www.parliament.scot/chamber-and-committees/votes-and-motions/S6M-07769 

Holyrood debate on the motion (17th June 2023):

Video: https://www.scottishparliament.tv/meeting/members-business-s6m-07769-evelyn-tweed-national-lyme-disease-awareness-month-may-17-2023

Professional Support for Change

Lyme Resource Centre is the only Scottish charity dedicated to providing information and education on tick-borne diseases: http://www.lymeresourcecentre.com/

Lyme Disease Action provides UK-based information on tick-borne diseases: http://www.lymediseaseaction.org.uk/

Lyme Disease UK provides patient support: https://lymediseaseuk.com/ – they also have a Facebook support group with over 10,000 members: https://www.facebook.com/groups/481294698590907/

Caudwell LymeCo Charity seeks to improve awareness and knowledge amongst the general public and the medical profession: https://caudwelllyme.com/

Ticktalk Ireland provides support in Ireland: http://ticktalkireland.org/

LymeDiseaseAlba is a recently created Facebook group to provide support for Scottish patients: https://www.facebook.com/groups/580078822148906/

Lyme Resource Centre is the only Scottish charity dedicated to providing information and education on tick-borne diseases: http://www.lymeresourcecentre.com/

Lyme Disease Action provides UK-based information on tick-borne diseases: http://www.lymediseaseaction.org.uk/

Lyme Disease UK provides patient support: https://lymediseaseuk.com/ – they also have a Facebook support group with over 10,000 members: https://www.facebook.com/groups/481294698590907/

Caudwell LymeCo Charity seeks to improve awareness and knowledge amongst the general public and the medical profession: https://caudwelllyme.com/

Ticktalk Ireland provides support in Ireland: http://ticktalkireland.org/

LymeDiseaseAlba is a recently created Facebook group to provide support for Scottish patients: https://www.facebook.com/groups/580078822148906/

Political Support for Change

Scottish MSPs showing support for urgent action to tackle Lyme Disease in 2017 (but there has been virtually no action since)

A Westminster point of view (Lord Astor of Hever): https://youtu.be/-FbmcEsK5YQ

A Canadian point of view (MP Len Webber): http://youtu.be/S0OLJHQdzZ4

An Irish point of view (Michael Healy-Rae): https://www.kildarestreet.com/debates/?id=2017-09-27a.525#g526

… and calls from Ireland to achieve a European response: 
http://www.lyme-int.com/blog/2017/12/06/riada-liadh-irland/

MEPs call for change at a European level: https://www.euractiv.com/section/health-consumers/news/le-parlement-europeen-alerte-sur-la-maladie-de-lyme/

The European motion for a resolution (section 6): 
http://www.emeeting.europarl.europa.eu/committees/agenda/201809/ENVI/ENVI(2018)0910_1/sitt-8652098

UK Official Documents

NICE Guidelines: https://www.nice.org.uk/guidance/ng95

UCL reviews commissioned by the Department of Health in England: http://eppi.ioe.ac.uk/cms/Default.aspx?tabid=3701

French National Plan

French National Plan to Fight Tick-borne Diseases: http://www.ticscotland.org.uk/french-national-plan

US Department of Health Tickborne Diseases Working Group

A US Airforce officer: https://www.youtube.com/watch?v=WAeyjdc39Yo

A 13-year old patient: https://www.youtube.com/watch?v=0y7zHrruPbQ

A US attorney patient: https://www.youtube.com/watch?v=-YvMgMQWerw

Legal Counsel for the National Capital Lyme Association: https://www.youtube.com/watch?v=yQAufbYJf78

A human rights advocate: https://www.youtube.com/watch?v=cbPgi7sbAfY

World Health Organisation

International investigation of human rights violations of Lyme disease patients: https://www.linkedin.com/pulse/human-rights-violations-relapsing-fever-lyme-disease-luche-thayer
and the final World Health Organisation report: http://www.ticscotland.org.uk/humanrightsdefenders

Ground-breaking changes in 2018 to Lyme disease diagnostic codes: https://www.linkedin.com/pulse/press-release-ground-breaking-recognition-lyme-11th-luche-thayer/
and as presented in the World Health Organisation IDC11: https://ticscotland.org.uk/lyme-idc11

Support and Information Groups

Lyme Resource Centre is the only Scottish charity dedicated to providing information and education on tick-borne diseases: http://www.lymeresourcecentre.com/

Lyme Disease Action provides UK-based information on tick-borne diseases: http://www.lymediseaseaction.org.uk/

Lyme Disease UK provides patient support: https://lymediseaseuk.com/ – they also have a Facebook support group with over 10,000 members: https://www.facebook.com/groups/481294698590907/

Caudwell LymeCo Charity seeks to improve awareness and knowledge amongst the general public and the medical profession: https://caudwelllyme.com/

Ticktalk Ireland provides support in Ireland: http://ticktalkireland.org/

LymeDiseaseAlba is a Facebook group to provide support for Scottish patients: https://www.facebook.com/groups/580078822148906/

Global Petitions

There are numerous petitions worldwide. Included here are a few with over 10,000 signatures:

UK Petitions:
– Over 13,000 signatures on Lyme treatment in the UK: https://www.ipetitions.com/petition/uklymepetition/
– Over 10,000 signatures on petition (now closed) on treatment in England: https://petition.parliament.uk/petitions/113475 

US Petitions:
– Over 80,000 signatures: https://www.change.org/p/president-trump-and-congress-drain-the-cdc-swamp-and-legalize-lyme-disease
– Over 65,000 signatures: https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf

Other Countries:
– Over 45,000 signatures (Australia): https://www.change.org/p/hon-greg-hunt-mp-please-lead-the-health-department-to-recognise-and-support-lyme-and-lyme-like-disease-patients-and-their-doctors-in-australia
– Over 80,000 signatures (Canada): https://www.change.org/p/minister-philpott-ticking-lyme-bomb-in-canada-fix-canada-s-lyme-action-plan-now