Sunday, 28 December 2014


POSTING UPDATE - A quick note to say that we are not meeting in Portcullis House after all - but going straight to the House of Commons.
Demetrios will write all the details later tonight - but briefly :
We go to entrance 8 (please see the map in the files of the group or download it from the Parliament web site))
which is known as the Cromwell Green Entrance; it's in St Margaret's Street.
We are being given a bigger room, Committee Room 14, for the whole of the meeting. It seats 170

There is to be a patient led Parliamentary Conference in the UK in January 2015 - details below

Lyme Disease Forum: 19th January, 2015

PART 1 - Atlee Room, Portcullis House: 1:00 p.m. to 2:00 p.m.
• Welcome speech from Rt. Hon. Simon Hughes MP 
• Words from Countess Marr 
• Meet and greet Opportunities

PART 2 - Committee Room 15: 2:00 p.m. to 5:00 p.m.
Attended by:Ruth Parry, Scientific Policy Manager, Department of Health (Micro-biologist, Virologist) 
Dr. Tim Brooks, Head of Rare and Imported Pathogens Laboratory, Public Health England, 
Amanda Semper, Scientific Program Manager, Rare and Imported Pathogens Laboratory, Public Health England (TBC).

Presentations by:
1. Dr. Armin Schwarzbach and Chris Moore 
2. Dr. Chris Newton and Dr. Beryl Beynon 
3. Peter and Denise Kemp Longman 
4. Dr. Mark Ashworth and Dr. Michael Wetzler 
5. Demetrios Loukas 
6. Q & A

Laptop and Projector will be provided in the Committee Room for presentations.
Final Q&A period will be for any discussion points that need raising following presentations.
People should leave questions for this final period rather than raising them while presentations are being given.

Regards, Michael Paul
Parliamentary Assistant 
Rt Hon Simon Hughes MP 
Minister of State for Justice and Civil Liberties 
MP for Bermondsey and Old Southwark 
House of Commons 

Those wishing to attend please email your name, email address and phone number contacts.To: 
Please title your email: LYME DISEASE CONFERENCE Attending
Proof of identification will need to be brought`along and presented at Portcullis House.
Please arrive at Portcullis House at least 30 minutes before the conference is scheduled to start, ie by 12.30pm.

A petition is to be sent to
Jane Ellison MP, Professor Dame Sally Davies and The Rt Hon Jeremy Hunt: 
'UK Lyme patients and concerned scientists and doctors have been preparing since May 2014 to meet with you: we hoped to inform you directly of our concerns about the dire state of diagnosis and treatment of Lyme Borreliosis and tick-borne diseases in Britain.'
'We cannot emphasise enough how much we need to talk with you and to explain directly what our concerns are. A panel of experts from Public Health England has been proposed to hear our presentations on your behalf.  Unfortunately, those same panel members have already heard similar presentations from our fellow patients and colleagues in several symposia and conferences over the last 2 to 3 years.  They are very welcome to attend but we also need fresh hearts and minds to appraise the overall situation, and in particular, a government minister from the Department of Health.'

Please go to the link to read the full details of the petition and if you live in the UK please add your voice and sign the petition.

Saturday, 13 December 2014


Federal Framework on Lyme Disease Act has passed in Canada.

The Senate has passed a private member's bill on Lyme disease, The legislation sponsored by Green party Leader Elizabeth May won Commons approval last June and now only needs royal assent to become law.
It calls on the government to call a conference of provincial and territorial ministers, medical experts and representatives of patient groups to develop a comprehensive Lyme disease strategy. Reported in the Huffington Post - 
Bill C-422 Federal Framework on Lyme Disease Act. 
For immediate release
12 December 2014
Senate Unanimously Passes Elizabeth May’s Federal Framework on Lyme Disease Act
OTTAWA - Elizabeth May’s Private Member’s Bill, C-442, the Federal Framework on Lyme Disease Act, was passed unanimously at third reading by the Senate the morning of Friday, December 12. The bill now awaits Royal Assent by the Governor General for it to become law.
“I am so thankful to my colleagues in the Senate, especially the bill’s sponsor Senator Janis Johnson, for passing C-442,” said Elizabeth May, Leader of the Green Party of Canada and MP for Saanich-Gulf Islands. “This victory belongs to all Canadians coping with Lyme disease and their loved ones. This bill never would have been passed into law without their advocacy and willingness to tell their stories.”
First introduced in June 2012, Bill C-442 was passed unanimously with multi-partisan support in the House of Commons in June 2014.  It will establish a framework for collaboration between the federal, provincial and territorial Health Ministers, representatives of the medical community, and patients’ groups to promote greater awareness and prevention of Lyme disease, to address the challenges of timely diagnosis and treatment, and to push for further research.
“The hard work of Minister of Health Rona Ambrose and the entire Lyme community was instrumental in making this bill a reality. I am also grateful to Senator Kelvin Olgilvie, Chair of the Standing Senate Committee on Social Affairs, Science and Technology, who helped to move C-442 through the committee process, after it was delayed by the shooting on October 22,” added Ms. May.
“C-442 is now the first piece of Green Party legislation in Canadian history,” stated Bruce Hyer, Deputy Leader of the Green Party of Canada and MP for Thunder Bay – Superior North. “I am proud of the way Elizabeth was able to work across party lines to pass the first Green Party bill. The passage of this bill will make such a tangible difference for those dealing with Lyme disease.”
Although it is rare for private member’s bills to be passed through both the House and Senate, Bill C-442 has received multi-partisan support from Senators and Parliamentarians, in addition to the Canadian Medical Association, the College of Family Physicians of Canada, and the Canadian Lyme Disease Foundation.
“Now that the bill has passed, I look forward to working with all relevant interest groups and governments, under the guidance of Health Minister Ambrose, for the national conference to develop the federal framework to deal with this dreadful illness,” concluded Elizabeth May.

Link to Senate hearing

The usual response from the IDSA caused last minute concerns 

Thank you Dr Cameron for your insights

Thank you Lyme Disease Action for reminding us to listen to the science (All the science) 

Thank you Elizabeth May and Canadian Advocates for Lyme disease patients, your success in paving a way forward is a shining example for other countries to follow.