Find out More
- Protect yourself from tick bites: https://lymediseaseuk.com/2016/02/10/avoiding-bites-preventing-lyme-disease/
- Learn how to remove embedded ticks (not everyone sees them): http://lymediseaseuk.com/2015/10/26/tick-removal/
- Recognise a bulls-eye rash (not everyone gets one): http://www.lymediseaseaction.org.uk/about-lyme/rashes/
- Lyme disease is often called the “Great Imitator” - learn about other symptoms: http://www.lymediseaseaction.org.uk/about-lyme/symptoms/
- Understand why early treatment is essential: http://www.lymediseaseaction.org.uk/about-lyme/treatment/
- Watch how to remove a tick and learn how difficult it is to diagnose: https://youtu.be/jY63Yb3QehA
- Understand what it feels like to have Lyme Disease: https://www.amazon.co.uk/Finding-Joy-Morven-May-MacCallum/dp/178545157X
- Watch a BBC documentary on Lyme Disease in the Western Isles: https://youtu.be/SUht_DJew-4
Presenting the Petition to The Petitions Committee
Scottish Parliament Motion
M-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.
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
Professional Support for Change
A Holyrood presentation (Dr. Joshua Berkowitz): https://youtu.be/RqUpzjUH0EU
An Irish point of view (Dr. Jack Lambert):
http://lymediseaseuk.com/2017/12/19/dr-john-lambert-expert-qa-video/
and https://on-lyme.org/en/sufferers/lyme-stories/item/273-we-don-t-have-perfect-tests-for-diagnosis-of-lyme
A French point of view (Prof. Peronne, in French): https://youtu.be/h7_zu0eYGwg
More French context (Prof. Francisco Veas): http://www.contagionlive.com/videos/issues-faced-by-lyme-disease-patients-living-in-europe
A US expert (Dr. Richard Horowitz):
in the Belgian Senate: http://youtu.be/SXxWxMuUh8w
and in a 2018 documentary: https://www.youtube.com/watch?v=UdGeB0szaBA
Another US point of view (Dr. Daniel Cameron): https://youtu.be/FaMWoKhn_dw
And another (Dr. Steven Phillips): https://youtu.be/Fy0ViOX7xNk
About the ILADS Physician Training Program (Dr. Joseph Jemsek): https://www.youtube.com/watch?v=4nrfbWKeQHM
Political Support for Change
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/
Scottish MSPs showing support for urgent action to tackle Lyme Disease:
UK Official Documents
Draft NICE Guidelines: https://www.nice.org.uk/guidance/indevelopment/gid-ng10007
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/frenchnationalplan
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: http://www.ticscotland.org.uk/lymeinidc11
Support and Information Groups
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 8000 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/
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 11,000 signatures on petition (now closed) on treatment in England: https://petition.parliament.uk/petitions/113475
US Petitions:
- Over 47,00 signatures: https://www.change.org/p/president-trump-and-congress-drain-the-cdc-swamp-and-legalize-lyme-disease
- Over 35,000 signatures: https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf
Other Countries:
- Over 44,000 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 30,000 signatures (Canada): https://www.change.org/p/minister-philpott-ticking-lyme-bomb-in-canada-fix-canada-s-lyme-action-plan-now