NICE Guideline Scope Stakeholder Comments Published

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‘Lyme Disease UK is a patient support network with nearly 4000 members and bears witness daily to thousands of patients who are suffering on an inhumane scale. Many have been ridiculed by medical professionals in various disciplines, dismissed, belittled, neglected and left with increasingly frightening and painful symptoms for which no help or guidance is offered.’ – LDUK

Lyme Disease UK is a stakeholder in the NICE Lyme disease guideline writing process and we submitted detailed comments on the NICE draft scope.

Our comments and the comments from other stakeholders have now been published by NICE along with official  responses, which can be viewed here. Some changes suggested by Lyme Disease UK and other stakeholders have been incorporated by NICE and the final scope can be found here.

To see all documents relating to the NICE Lyme disease guideline writing process, click here.

‘The general overview is that EM rashes are frequently being ignored by GPs and that people aren’t being asked about potential tick exposure. Furthermore, it often appears that people are not being offered Lyme disease testing despite presenting with numerous symptoms consistent with the disease. Some people even report hostility from doctors if they request a test and many are told that Lyme disease is either very rare or that it does not exist in this country and that they should not be researching the disease online.’  – LDUK

We look forward to continuing to be part of this process and we hope that the guidelines serve Lyme disease patients well and that our comments raise important issues surrounding the testing, diagnosis and treatment of the disease.

“It also appears that people are all too readily being turned away or misdiagnosed with CFS, fibromyalgia and mental health issues without tick-borne infections even being considered.” – LDUK

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