UK Lyme sufferers have asked 38 degrees to run a campaign on our behalf.

 38 Degrees is a British not-for-profit political-activism organisation that campaigns on a diverse range of issues, it has a good record for effecting change and putting pressure on the politicians. Please vote for this campaign if you haven't already, it's easy to sign in and vote. You get given three votes, it would help us if you used all three to vote for this campaign. Please also share the link so as many people as possible can sign. Thank you!

http://38degrees.uservoice.com/forums/78585-campaign-suggestions/suggestions/3947361-improving-the-testing-diagnosis-and-treatment-of

Improving the testing, diagnosis and treatment of Lyme disease in line with current research not biased American guidelines

Lyme disease is frequently misdiagnosed, in the early stages as flu, cellulitis, rash, fevers; in the late stages as chronic fatigue syndrome (ME), fibromyalgia, multiple sclerosis, motor neurone disease (ALS), lupus, glandular fever etc. Despite many of these latter syndromes having no diagnostic test or treatment, a diagnosis is made due to the lyme test being negative in many cases. Yet a paper by the former head of the lyme borreliosis unit showed 14% of screening tests do not pick up a borrelia infection (http://www.ncbi.nlm.nih.gov/pubmed/21117376 ), without a positive screening test the NHS will not pursue further testing or diagnosis of lyme disease. In glandular fever, 3 negative tests aren't sufficient to rule out a diagnosis, yet in lyme the NHS/HPA refuse to accept the possibility that their current tests are inadequate.

In the lucky early cases identified by the erythema migrans rash or those detected by blood test between 7 and 28 days of antibiotics are prescribed. This is also insufficient (http://cid.oxfordjournals.org/content/43/6/704.full and http://www.ncbi.nlm.nih.gov/pubmed/21117376) with documented cases of active infection continuing post treatment - these cases will not be treated any further by the NHS. Other cases may relapse many years after the original infection, this is not treated by the NHS either.

Lyme disease can be complicated by a number of co-infections including bartonella and babesia - non-classical presentations of these infections due to altered immune response from multiple infections are not accepted by the NHS either.

Testing, diagnosis and treatment of Lyme disease and its co-infections are completely inadequate in the UK. NHS guidelines are based on flawed American guidelines, which suffered heavily from conflicts of interest by panel members, and are based on the American, not European strain of the bacteria; they need to be updated to reflect current research, European presentations and the interests of patients who have to leave the country to get proper treatment.

This cause has already gained 10,000 UK signatories athttp://www.ipetitions.com/petition/uklymepetition/ but now needs the help of 38 degrees to make the NHS and Department of Health take notice.

654votes

Sophie shared this idea  ·  May 12, 2013