Please help us develop a new test for Lyme disease

For: Patients with Lyme disease
United Kingdom
Organizer: Dr. Chris Newton and Dr. Armin Schwarzbach
£382
of £100,000 goal.
Raised by 12 donors
0% Complete
This fundraiser is not active at this time.

The Story

To promote our FIGHT LYME NOW campaign, we are offering everyone a free download of our campaign song, 'Fight it!’.  We hope you'll enjoy it and feel compelled to share it!

Click here for free download of FIGHT LYME NOW campaign song
FIGHT LYME NOW campaign song 'Fight it!' (YouTube)
FIGHT LYME NOW campaign song (Christmas version) 'Never give up' (YouTube)

Nationwide Survey Launched!

UK Citizens please complete this survey for Neil Coyle MP if you or anyone you know has symptoms consistent with Lyme disease.

http://www.boslabour.org.uk/lyme_disease_survey

UK Citizens please sign and share this official petition for parliament to debate Lyme disease.

https://petition.parliament.uk/petitions/113475

Campaign summary

Lyme disease (Lyme Borreliosis) is a life-changing illness caused by a bacterial infection which can be transmitted by the bite of an infected tick.

For the last 25 years the NHS has been using diagnostic tests for Lyme Borreliosis that are known to be inaccurate and unreliable.  This has resulted in hundreds of thousands of symptomatic patients being systematically denied treatment.

This is unacceptable and unethical; we must ACT NOW to end this suffering.

Alarmingly, there is evidence that Lyme Borreliosis could be transmitted sexually and maternally.  Research from 1986 onwards, shows that it has caused stillbirths and damage to the foetus in pregnancy.

Additionally, the bacteria that cause Lyme disease have also been associated with conditions such as Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Multiple Sclerosis (MS), Parkinson’s disease, Alzheimer’s disease, Bi-polar disease and Autistic spectrum disorder (ASD).

Our aim is to develop a more specific and sensitive test that will reliably diagnose people and allow appropriate treatment for this cruel disease through the NHS. 

Please donate to our research fund.

Note: This is a free site but when you proceed to make a donation to our fund, the site automatically suggests an amount for you to donate to the website organisation.  THIS IS NOT OBLIGATORY.  If you do not wish to donate to the site, all you need to do is delete the amount they suggest and replace it with zero (0.00).

Statement from patient-mandated scientists Dr. Chris Newton (MSc PhD Research Scientist) and Dr. Armin Schwarzbach (MD PhD Specialist in Laboratory Medicine):

We are concerned that NHS testing for Lyme disease will continue to be based solely on the detection of antibodies to the infective agent of Lyme disease (Borrelia)Over the last 25 years, it has been well-documented that antibody testing for cases of clinically diagnosed Lyme disease is only between 20% and 60% accurate, depending on the test system employed.

Antibody tests are INDIRECT methods of looking for infective agents.  We believe that all future testing regimens must include a DIRECT testing method which is capable of identifying the very low numbers of Borrelia bacteria that may be present in the blood (and tissues) of individuals with symptoms consistent with Lyme disease.

The Head of Clinical Services at the Rare and Imported Pathogens Laboratory (RIPL), PHE (Public Health England) at Porton Down, Dr. Tim Brooks, has suggested that currently the only way we could undertake new research into developing new diagnostic methods for Lyme disease is to apply for a government research grant.  We know from past experience that this approach is time consuming and success is by no means guaranteed.  Considering the urgency of this national health issue, we believe that we have no other choice but to ask for financial assistance from the British public to fund this important work.

There is evidence for an association between the infective agents of Lyme disease (Borrelia) and conditions such as Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Multiple Sclerosis (MS), Parkinson’s disease, Alzheimer’s disease, Bi-polar disease and Autistic spectrum disorder (ASD).  For this reason, we are asking other patient groups afflicted with these conditions to back our initiative.

We aim to use funds generated by this campaign to develop a highly sensitive DIRECT testing method for the detection of Borrelia burgdorferi and other pathogenic Borrelia species.  Once developed, we plan to discuss this new methodology with Public Health England with a view to making it available to the public as quickly as possible.

Dr. Chris Newton and Dr. Armin Schwarzbach

More about the scientists:

Dr. Chris Newton
is an experienced biomedical research scientist who was acclaimed for his work in London and Munich on the development of a new class of cancer treatment.  In late 2010, Dr. Newton began working with Dr. Beryl Beynon of the Well One Clinic in Yorkshire where she was seeing an increasing number of patients with suspected Lyme disease.  This is where Dr. Newton began his research into better laboratory testing and treatment strategies for patients with Lyme disease.  Since then, he has established a network of biomedical scientists across Europe and America who share the same aim.

http://www.welloneclinic.org.uk/services.html

Dr. Armin Schwarzbach is already well-known across Europe for his array of diagnostic tests for Lyme disease, co-infections and other tick-borne diseases.  These tests are the best available at the moment and have been found to be more specific and more sensitive than the standard NHS tests.  Dr. Schwarzbach has kindly offered to collaborate with Dr. Newton in researching and developing a new test based on DNA technology.  The new testing method could take a while to design but in the meantime, UK patients and those who suspect they have Lyme disease are strongly encouraged to contact Dr. Schwarzbach’s laboratory for help and guidance.

http://www.arminlabs.com/en

Introduction from campaign organiser Demetrios Loukas:

On the 19th January 2015, I, together with Sir Simon Hughes, organised the first ever UK patient-led parliamentary conference on Lyme disease.  I invited the Health Minister, Jane Ellison, but she sent four members of PHE to attend on her behalf.  Two of the most important speakers at the conference were Dr. Armin Schwarzbach, the European expert on Lyme disease and MD of Armin Labs in Augsburg, Germany, and Dr. Chris Newton who is an expert in cell and molecular biology and the development of medical treatment modalities.

As a result of the parliamentary conference and the continued involvement of Sir Simon Hughes, Dr. Schwarzbach, Dr. Newton and I (as patient representative) were invited to RIPL on the 16th June 2015.  We had a 6-hour meeting with Dr. Tim Brooks and his team and he agreed that the current diagnostic tests used by the NHS are not totally reliable.  A major outcome of this meeting was that he would remind all NHS clinicians that a negative blood test should not be used to exclude a clinical diagnosis of Lyme disease.

In view of the fact that many NHS Infectious Disease doctors are still turning patients away because of negative NHS blood tests, UK Lyme patients are deeply concerned that this important reminder from Dr. Brooks has yet to be acted upon by all NHS clinicians.  Furthermore, UK Lyme patients feel that the Department of Health is failing to recognise this national health issue and make funds available for the development of new testing methods for the pathogenic agents of Lyme disease.

Shortly after the general election, the successor to Sir Simon Hughes, Neil Coyle MP, invited Dr. Newton and myself to a meeting at the Houses of Parliament to discuss the Lyme disease issue.  Mr. Coyle advised that a patient survey should be undertaken to demonstrate the cost to society of undiagnosed and/or misdiagnosed Lyme disease in the UK.  He offered to host this patient survey on his personal website and he promised he would use the results to lobby parliament about this national health problem.  For this patient survey to have credibility, we need close to 1000 patients to take part.

Please share the survey link with as many Lyme patients as possible.  It's important that everyone who has symptoms consistent with Lyme disease, including patients who have been successfully treated, completes the survey.

British Lyme patients: for fantastic online support, please visit Lyme Disease UK.

http://lymediseaseuk.com

Please 'like' our Facebook page:

https://www.facebook.com/FIGHT-LYME-NOW-1001949283182018/#

Please follow us on Twitter:

https://twitter.com/FightLymeNow

Demetrios



Fundraiser Updates

Posted on February 9, 2016

Posted on February 9, 2016

Thank you very much to all the patients who kindly came forward to be interviewed by their local radio stations in support of our FIGHT LYME NOW awareness campaign.

We've uploaded a compilation of patient interviews that were featured in radio news bulletins all over the country and you can listen to it here:

https://www.youtube.com/FIGHT LYME NOW campaign compilation of radio press


Posted on January 14, 2016

Posted on January 14, 2016

Dear Fight Lyme Now contributor,


On behalf of my fellow campaign organizers Demetrios Loukas and Dr Armin Schwarzbach, I would like to thank you most sincerely for your donation to the Fight Lyme Now campaign. 

This has been a difficult decision to take and I have to say that it is with great regret that we have decided to close down the current fund-raising campaign and return your generous donation.

It was always a controversial decision whether to ask for donations from patients, carers and the general public, but considering the importance of our aim and the lack of available funds from other sources, we felt that we had to try this route.

Crowd funding is about many people giving a small amount of money; this campaign in the six weeks that it was live, received substantial funds from a relatively few individuals. At the rate that funds were accruing, my co organizers and I felt that our £100,000 target, necessary to achieve the stated aim of the project, could not possibly be met in a realistic timeframe. Rather than wait for the slow trickle of funds to amass, we felt that the campaign should be closed and the donations reimbursed.

Our stated aims of the campaign were, ‘to use funds generated by this campaign to develop a highly sensitive DIRECT testing method for the detection of Borrelia burgdorferi and other pathogenic Borrelia species’. If successful, this methodology would not have replaced existing serology methods or T-lymphocyte tests (such as the EliSpot or MELISA), rather it would be used alongside these methods. It is still our intention to pursue this aim, however it is clear that our strategy will have to change if we are to raise the considerable amount of money that will be needed to initiate the project.

I must make it clear that the above only applies to the funding side of Fight Lyme Now. The campaign is still open to receiving completed surveys in order that we may present some of the information to the MP, Neil Coyle.

Thank you all once again.
Many best wishes, 

Chris

Chris J. Newton Ph.D.
Biomedical Scientist, Fight Lyme Now campaign

Posted on January 13, 2016

Posted on January 13, 2016

A massive thank you to the following UK radio stations for covering our FIGHT LYME NOW campaign: 

Star Radio (North East England) 
http://www.starradionortheast.co.uk/online news article

TFM Radio (North East England) 
http://www.tfmradio.co.uk/online news article

Spire FM (Salisbury) 
http://www.spirefm.co.uk/online news article

Minster FM (York) 
http://www.minsterfm.com/online news article

Sam FM (Swindon) 
http://www.samfm.co.uk/online news article

Pirate FM (Cornwall) 
http://www.piratefm.co.uk/online news article

Central FM (Scotland) 
http://www.centralfm.co.uk/online news article

LGR (London Greek Radio) 
http://www.lgr.co.uk/online news article

Eagle Radio (Surrey)
http://www.964eagle.co.uk/online news article

Splash FM (Sussex)
http://splashfm.com/online news article

Bright FM (Sussex)
http://brightfm.net/online news article

Arrow FM (Sussex)
http://arrowfm.co.uk/online news article

Sovereign FM (Sussex)
http://sovereignfm.com/online news article

The Beach radio (East Coast)
Kingdom FM (Scotland)
Juice 107.2 (Brighton)
Free Radio (Midlands)
Bob FM (Home Counties)

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