Ms Kathy Forde:

The members of Tick Talk Ireland thank the Chairperson and the Joint Committee on Disability Matters for the invitation to attend here today and discuss our role in self-advocacy under the UNCRPD. We are here to provide an insight based on our lived experiences that patients with Lyme disease and co-infections are adequately represented and treated in a timely manner while adhering to international best practice. We feel strongly that there needs to be greater awareness of Lyme disease if we are serious about protecting quality of life, dignity and human rights. The pervasive culture of ambiguity must cease immediately. It is imperative such treatment is administered through a centre of excellence, preferably in Ireland.

Lyme disease is one of the fastest growing vector-borne diseases in the western world, and the threat it poses has become increasingly apparent in recent years. New cases of Lyme disease in the United States are more common than breast cancer, HIV, AIDS and tuberculosis combined. It is likely that more than 14% of the world's population has had tick-borne Lyme disease. Lyme disease bacteria is spread to humans through the bite of an infected tick. Lyme disease is known as "the great imitator" as symptoms are non-specific and can mimic many other conditions such as myalgic encephalomyelitis-chronic fatigue syndrome, ME-CFS, fibromyalgia, anxiety, depression, Alzheimer's and Parkinson's. The chance of misdiagnosis is high.

Ticks are often referred to as "nature's dirty needles" because in addition to Lyme disease, they can, while feeding on mice, birds, and other animal hosts, carry numerous other infections known as co-infections. Infected ticks have been found all over Ireland in woodland, open countryside and even in urban parks and gardens.

Lyme disease infection can occur at any time of the year.

Early diagnosis and prompt antibiotic treatment are crucial to prevent life altering complications. Symptoms include, but are not limited to, fever, chills, headache, fatigue, muscle and joint aches, swollen lymph nodes and may occur in the absence of rash, along with multiple other symptoms. It is irrefutable that there is a culture of medical ambiguity worldwide, with inappropriate timely interventions for patients and their families, that are not aligned with best practice on multiple fronts. Its impact is such that it can lead to family break-up, the sale of the family home, sustained heightened stress levels, child and parent alienations over many years. This is further exacerbated and compounded with patients regularly experiencing unequal access to and in the quality of legal services, such as differences between public and private legal practice and gender bias through the courts.

We have deep concerns that persons with Lyme disease continue to face barriers with their participation in society as equal citizens. The fact that the majority of persons with Lyme disease are pushed into poverty enforces the critical need to address the negative impacts accordingly for the patients and society. The over reliance on delisted and discredited guidelines has seen people with Lyme disease question their own sanity, emotionally invalidated, ignored, maligned, misdiagnosed, denied medical treatment and adequate care. Quite simply, lives are being put at risk.

Not having access to modern, accurate testing, diagnosis and treatment is significantly impacting people’s health, degrading individuals rights and dignity, is a human rights violation. Internationally accredited laboratory testing within the EU is being ignored. Policy needs to adequately reflect the fluctuating nature of the realities people with Lyme disease live with. We seek the implementation of medical treatments with a whole-system approach for the care of patients with Lyme disease. Together with the pooling of knowledge with the patient, based upon honouring the interconnection of the whole person, the pathology they are faced with and the multitude of treatment options that are available to formulate customised treatment plans. In the same way that clinical attention, public awareness and funding were brought to the issue of HIV-AIDS and other once-mysterious conditions, this must be done for Lyme disease today. We are solution focused and will be happy to contribute in any way we can to develop these outcomes. We need urgent intervention which is based on best practice. Far too many medical personnel across disciplines have been happy to adopt a deflective and evasive approach, centred on a culture of willful blindness, for far too long. This serves no one well - not the patients or their families. It works against the development of a more equitable society, increased costs for mental health and it does not abide with the principles of open government. Can we agree here today that we will meet again in six months, with a clearly defined pathway to achieve patient-centric Irish guidelines for Lyme disease and co-infections building on all available best practice? We wish the committee well in its work today. I will hand over to Anthony in case he wishes to add anything.