Patients want to see improvements in the diagnostic and treatment process of Lyme disease as well as recognition of the role that co-infections play in the clinical picture. Many patients feel as though they’ve been completely abandoned by the NHS and as a result, they are forced to seek help elsewhere. There are 2,000 – 3,000 serologically confirmed cases annually in the UK but patients believe this figure to be far higher. In 2013, the American CDC increased the estimated number of cases tenfold and UK patients believe this increase could potentially be applicable to this country too.
Many other countries across the world, from Australia to Sweden, from Canada to Spain; held similar rallies and events during May, the month chosen to highlight Lyme disease worldwide. German patients protested in 5 major cities, French patients in 3, while US patients protested outside the 2 main offices of the Infectious Disease Society of America – the authority that has influenced all medical treatment of Lyme disease for the past 35 years.
The UK protesters had travelled from all parts of the country to demonstrate outside the Department of Health building, Richmond House in Whitehall, and to show their dissatisfaction with Lyme tests and treatment. They insisted that the evidence about the persistence of the disease is being ignored by the Department of Health, who are failing to acknowledge that many thousands of patients have become chronically infected. Leaflets and tick-warning cards were handed out to the public, giving information on how to deal with a tick bite, plus measures to reduce the risk of being bitten. At the same time as the protest in London, a similar event was held in Hull outside the Guildhall, where it attracted the attention of local dignitaries, including the ex deputy Prime Minister, John Prescott.
The event was mentioned in several local and national news articles.
Protesters outside the Department of Health in London.
Donna Hopskinson in Hull.
In Whitehall, the demands of the UK Lyme petition were read out as part of the following declamation;
”We call on the Government of the United Kingdom and Northern Ireland to heed us. We speak with the voices of 13,000 who have signed their names to these demands….
- We demand that Lyme borreliosis and all tick borne diseases be made a Schedule 1 notifiable disease, so that the true incidence becomes apparent.
- We demand that better methods are actively explored to test for and diagnose both acute and chronic infections; and doctors should be allowed to make clinical diagnoses, rather than depend on the present unreliable blood tests.
- We demand that doctors be trained in the treatment of borreliosis and other tick-borne diseases. Given the number of patients who may now be infected, we ask that special clinics are established where the diverse range of the effects of the disease can be acknowledged and treated.
- We demand that treatment is extended for as long as necessary, and to include the use of high dose, combination or long-term antibiotics, especially in those patients who have been ill for a long time. We need patients to be followed up and monitored for years in some cases, to monitor relapses of the infection.
- We demand that medical schools and practising physicians be made aware of the research and latest knowledge in diagnosis and treatment of Lyme disease, as well as the other emerging infectious diseases carried by arthropods, which may cause co-infections in patients with borreliosis.
- We demand that all government agencies for the Environment, Health, Sport and Tourism use their resources to make the general public in the UK aware of the potential risks from tick bites.“