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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.

Alexander Burnett MSP with Lyme patients

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

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/

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

Scottish MSPs showing support for urgent action to tackle Lyme Disease:

Scottish MSPs showing support for urgent action on 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 9000 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 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