It’s great to see so many patient surveys taking place in the UK which collectively help to build a picture of the scale of the suffering Lyme disease patients are experiencing as well as the cost to society and the issue of misdiagnosis.
This latest survey is conducted by VIRAS (Vector-borne Infection – Research, Analysis, Strategy). a non-profit group comprised of patients and professionals with knowledge and experience in Lyme borreliosis and coinfections, Myalgic Encephalomyelitis (M.E.) and Chronic Fatigue Syndrome (CFS).
A message from the VIRAS team;
‘The survey, which involves the Symptom Checker Isabel, used by NHS doctors, is open to anyone who has been diagnosed by a physician with ME, Chronic Fatigue Syndrome, Fibromyalgia and Lyme disease to try and highlight the overlaps between these conditions. This is particularly important as the ‘The National Institute for Health and Care Excellence (NICE) Guideline Development Group for Lyme disease, propose to exclude M.E., CFS and Fibromyalgia from being considered as misdiagnosed Lyme disease on the basis of unreliable tests. This policy follows-on from the evident intention of Public Health England to direct Chronic Lyme patients into the hands of psychiatrists and a diagnosis of Chronic Fatigue Syndrome. If this is not challenged, it means that chronically infected Lyme patients will never have a chance of diagnosis and treatment….when Lyme is not diagnosed and treated early, the infection can become chronic with severe and even life-threatening symptoms. Yet even when patients have not been diagnosed for decades, treatment can still help. This is why it is important that NICE should not ignore patients with all these illnesses.’
For full instructions on how to take the survey, please click here
Please note that VIRAS are receiving feedback that the Symptom Checker is not mobile phone friendly, so a PC is usually needed. Also, that pop-up blockers might prevent all the options from working, so they might need to be switched off temporarily.
To see preliminary results of the survey, click here