West Midlands MEP James Carver is backing calls for a “revolution” in the diagnosis of the little-known Lyme disease.
The issue of mis-diagnosis was raised with him by a constituent, a chronic sufferer for more than 20 years, who is campaigning for increased awareness among GPs, improved medical guidelines, testing and treatment.
GPs often mis-interpret the symptoms as chronic fatigue syndrome or fibromyalgia, but it is a bacterial disease caused by tick bites, and possibly mosquitos and other biting insects.
Symptoms often, but not always, start with a distinctive skin rash, and can include malaise, unexplained flu-type symptoms, soreness, light and noise sensitivity, cognitive problems, facial palsy, stiff neck, numbness and tingling.
Left untreated, the infection can spread to anywhere in the body leading to around 70 recognised symptoms ranging from joint pain and swelling, to muscle weakness, to confusion, to seizures.
Mr Carver, an independent Euro MP, said: “My constituent is campaigning for a revolution in the diagnosis of Lyme disease because so many infected people are denied early and correct treatment because of mis-diagnosis.”
In a recent UK patients’ survey a staggering 29 per cent had had Lyme disease symptoms for 10 years before being diagnosed and two-thirds of respondents had been ill for more than two years.
Of the 500 respondents, 210 reported that they have an alternative or additional diagnosis, mainly chronic fatigue syndrome or fibromyalgia, according to their NHS notes. Both these conditions are diagnosed subjectively as there is no objective test.
Mr Carver added: “Patients have even been wrongly diagnosed with mental health conditions, offered anti-depressants or cognitive behavioural therapy.
“There are also concerns about the reliability of the test, which has a false negative rate of 66.8 per cent and fails to identify many of the different strains of Lyme
“Early diagnosis should make Lyme disease easier to treat successfully. We want to see the proper teaching of the disease, which it is estimated affects 65,000 people a year across Europe, as a compulsory component of medical students’ curriculum and for definitive instructions for the reading of test results across the nations.”
Last November Mr Carver voted in favour of a European Parliament resolution calling for improvements in prevention, awareness and diagnosis of what it called the “silent epidemic” of Lyme disease spreading across member states.