Ms Kerry Lawless:

Tick Talk Ireland will be ten years old in 2019. We have 2,700 members, North and South, in urban and rural areas. The membership has grown by something like ten people a day in the past few months. In the 24-hour period after the documentary "Living With Lyme Disease" was aired, 150 people contacted us. That was the level of demand for the three voluntary administration workers and on the Tick Talk Ireland Facebook page. Other individual patients and local patient groups were contacted. One particularly active volunteer in the north west left her house on the following day to go to Penneys. It took her four hours to get there because people were stopping her to say their children or neighbours were sick or that they knew someone with the condition. They asked her if the sickness could be Lyme disease and, if so, what they could do. They described receiving negative test results and trying various approaches. Some said their doctors would not believe them, or that they did believe them but did not think they could actually care for them because of the guidelines. In some cases, passers-by described consultants laughing at them. They wanted to know what they should do and where they should go. That is what a voluntary group dealt with in one 24-hour period and patients who are sick are dealing with in trying to help other patients.

We will have a lot of reasons to be proud next year when the organisation will be ten years old. We are going to have a big celebration. We will look back at the individuals who have made it possible, the work that has been done, the level of awareness created and the people who have been helped. Then we will reflect on other things that have happened in that ten-year period. I refer to the huge advances made in science and the amount of peer-reviewed, validated research available. We do not know everything there is to know about Lyme disease and other tick-borne illnesses, but we know a lot more than we did ten years ago. There is so much new knowledge available, while there have been many advances in clinical practice. What have the Department of Health, the HSE and the Health Protection Surveillance Centre done? The answer is nothing. They have stuck rigidly to guidelines which are contested and have been removed from the CDC website because they do not meet the strict scientific criteria applied, yet we are clinging blindly and rigidly to them, insisting that the Earth is flat and that if we keep saying it is, it will somehow become flat. What happens when these bodies are blind to the science and new developments? The answer is that people suffer. People have lost their livelihood. They have had to sell farms and wind up businesses. They have gone bankrupt. Marriages have broken up. Children have missed school or never been able to go back. Mothers have been threatened by social services that their children will be taken away because they insist that they are ill, that it is not a psychological but a physical illness that can be cured.

All that has happened in the past ten years. Luckily, other people have managed to access treatment here in Ireland, through Dr. Lambert. I am one, I am a public patient, there are very few of us left and we have managed to get better. Other people, like my colleague, Mr. Symes, travelled abroad and got treatment for himself and his son and is back to farming. Ms Nicci St. George Smith, who is present, also got treatment. She went the herbal route because there is no one way to deal with this and she is in recovery. We are trying to make our voices heard for the people who have not been able to access treatment.

Apart from those 2,700 members of Tick Talk, how many people do not use social media, did not see the documentary, do not know how to contact us or reach out and believe what they were told by the general practitioner, GP, or the consultant? How many believe the diagnosis of fibromyalgia or chronic fatigue, that they "have to learn to live with it", are on symptom-modifying drugs and painkillers, and lead small lives when there is absolutely no need for it because antibiotic or herbal treatment can make them better? Maybe not everyone makes a full recovery depending how sick they were, which co-infections they got, how much damage it has done to their nervous systems and so on. We meet resistance, as Dr. Lambert has said. People insist it is rare when they do not know because they have not done studies. They insist it is easy to treat when there are countless studies that say that is not the case. They tell us they cannot give antibiotic treatment because it is dangerous. They give antibiotic treatment for tuberculosis. If one's spleen is removed, one remains on antibiotic treatment for the rest of one's life and the sky does not fall in. I have been on long-term antibiotic treatment and I have got better, week on week, month on month. I am not quite there but I am here today and two years ago I was in bed. I am monitored closely, my bloods are taken, my liver is doing fine, I am tolerating the antibiotics, I have made the lifestyle changes I need. I am taking the supplements and protecting my gut health because I am getting proper care. I am doing it right and I am getting better. Why cannot everybody have this opportunity? Why is it just because I was lucky enough to live in Dublin and was able to access the public system or others were lucky enough that their communities rowed in behind them and fundraised €25,000 or €30,000 for them to travel to the US, to Germany, to other places to get the treatment they should have here?

We are still met with the refusal by the Department of Health, the Health Service Executive, HSE, and the Health Protection Surveillance Centre, HPSC. A new report is coming out. One of the last times Tick Talk appeared before this committee the committee recommended the setting up of a sub-committee on Lyme borreliosis. The sub-committee was set up. The so-called experts were all gathered in the room, Tick Talk nominated a patient representative, and in three years it has done very little. I have seen the draft report – I do not know if other people in the room have – it is completely lacking in vision and ambition. It has kept as narrowly as possible to the terms of reference. It has not even satisfied those terms. For three years, every time one of our members has gone to their local Deputy and asked for a parliamentary question to be submitted we are told there can be no comment on this because the report is coming. The report exists in draft form now. I wonder why we waited three years and how many people have got sick in the past three years who could have got an early diagnosis and treatment and got their lives back by now but instead have been allowed to develop a chronic, lifelong debilitating illness. We are talking about clinging to contested guidelines that we do not support, that came out of the Infectious Diseases Society of America, IDSA, which is even beginning to say the test is not accurate and that perhaps relying on it is sub-optimal. Have we shifted? Are we looking at doing that? We claim we follow these guidelines and best practice. We claim everything we do here is based on the evidence yet when the very people who designed the guidelines are beginning to question them, we still say what we are doing is right.

Since the cross-party action group was set up last year there have been significant developments. The political support we get is heartening and has allowed us make some progress. We had meetings with the HSE and the Department of Health. We were received very politely, we were listened to, we were not quite patted on the head but it was close because this is quite a gendered issue too. As with many autoimmune issues, more women than men are affected. That all comes into play as well. We presented our analysis, which I believe has been circulated to the committee and we have hard copies for everyone in the audience of what they say, how the research refutes them and what we would like them to do. We were told more or less that there might be common ground on prevention, maybe we could get a few posters up in the national park but when it comes to matters such as testing, the proper diagnosis, the treatment of chronic Lyme, we have to listen to the experts.

We asked the Department and HSE at the meeting and we are asking the committee today, to help us make people step back from these fixed positions and read all of the science, not just the science that confirms what they already believe but all of the science that is available and that has been accepted by the World Health Organization and come up with fresh guidelines based on that. Let us not follow the UK blindly and replicate the guidelines it has come up with. There are improvements in them in respect of prevention and the acute cases when people have been recently bitten. All it did, however, was tinker round the edges and did not grasp how serious this is, how much has to be done and it certainly did nothing for people with chronic Lyme. The reason I had chronic Lyme for ten years was that I was undiagnosed, misdiagnosed and denied adequate treatment. There was no reason for me to lose ten years of my life. There is no reason for thousands of other people across Ireland to lose years off their lives. We are talking about treatment protocols that work and about antibiotics. For us to follow the National Institute for Health and Care Excellence, NICE, guidelines blindly and for someone from Tick Talk to be back here in another ten years telling the committee that more and more people have been bitten, got sick, lost their farms and become bankrupt would be a scandal because there is something we can do about this.

Another suggestion in the draft HPSC report is that one of the recommendations is that a new sub-committee will be set up to develop new guidelines. Will the very people who misdiagnosed me and other patients and who denied us treatment be the ones sitting around the room devising these new guidelines? Is the committee going to say that it suddenly trusts the people who for the past ten or 15 years have ignored the science, refused to read the new research, refused to keep up with evolving clinical practice to come with effective guidelines for the Irish health system? No. The reason we are in this mess is that these people would not read the science or keep up with evolving medical practice and have stuck to the idea that science never changes, medical practice never evolves, there is no new knowledge. There has to be a fresh group of people in the room, people who have a background in treating patients with Lyme disease and making them well if we are to have meaningful guidelines and a meaningful change of practice. This is where we need the committee's help. We need to bring political pressure to bear because the medical community at consultant level has shown itself to be incapable of change. Maybe as a patient and lay person I am being unfair. There are lots of good GPs who want to help their patients but they are scared to because they do not have the backing of a consultant. Will they be in trouble if they prescribe antibiotics for more than two or three weeks? I will ask Mr. Symes to read a text he received yesterday which backs this up.