Research, Analysis, Strategy
THE SURVEY IS NOW CLOSED
THANK YOU TO ALL WHO TOOK PART
PRELLIMINARY RESULTS CAN BE SEEN HERE
Please Note. We are getting feedback that the online survey is not friendly for mobile devices (phones) - so a PC is the best way to participate. 'Pop-up' blockers can also prevent all the options from working so might need turning-off temporarily.
The National Institute for Health and Care Excellence (NICE) Guideline Development Group for Lyme Borreliosis, propose to exclude M.E., CFS and Fibromyalgia from being considered as misdiagnosed Lyme 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.
To help us challenge this, we are asking patients to complete the Isabel Health Care online 'Symptom Checker' if they have any of these physician diagnosed illnesses:
ME (Myalgic Encephalomyelitis)
CFS (Chronic Fatigue Syndrome)
This might help to show if Lyme, ME, CFS and FM have overlapping symptoms which might lead to misdiagnoses. 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.
This is what Isabel Health Care say about their Symptom Checker:
"The Isabel Symptom Checker is very different. For the first time, it gives you access to a highly sophisticated medical diagnosis tool that is much more powerful than previously available symptom checkers. Using the latest searching technologies, the system can take a pattern of symptoms in everyday language and instantly compute from our vast database of 6,000 diseases, the most likely ones." ((c) 2012-13, Isabel Healthcare Limited All rights reserved)
Dr Hugh Derham in Australia tested 300 of his ME, CFS and FM patients and found that 95% were positive for Lyme.
Dr Samuel Shor in the USA reviewed 210 patients and found that a, "potentially substantial proportion of patients with what would otherwise be consistent with internationally case defined CFS [...] actually have a perpetuation of their symptoms driven by a persistent infection by Borrelia burgdorferi."
Dr. Kenny De Meirleir in a presentation to the Belgium Senate, observed that 95% of Chronic Fatigue Syndrome and ME (Fukuda & Canadian criteria) were cases of Late Stage Lyme Disease. 95% having had positive Borrelia burgdorferi LTT tests.
You are invited to take part in the survey if you have any of these diagnoses:
ME, CFS, FM, Lyme
You must be at least 18 years old to take part.
PLEASE FOLLOW THE INSTRUCTIONS CAREFULLY.
The Symptom Checker can only be completed once by each person for this survey.
NO PERSONALLY IDENTIFIABLE INFORMATION WILL BE COLLECTED.
RESULTS WILL BE MADE PUBLIC AND PROVIDED TO NICE/PHE/NHS.
If you have many symptoms that fluctuate, it might help to list some on a piece of paper before using the online Symptom Checker.
It is not necessary to include every single symptom (especially if you have many) but please try to include the main ones you experienced in recent weeks.
If you have difficulty recalling your symptoms the quick reference list at the bottom of this page might help.
PLEASE NOTE: the Symptom Checker can suggest some other terrible illnesses as well as Lyme, M.E. and FM. None of these illnesses are diagnosed on symptoms alone, but require medical evaluation and a physician's experience and judgement. So please do not be alarmed by the alternative Symptom Checker suggestions. If you have concerns, please consult your doctor.
We have information that the Symptom Checker will not work on an iPad - it needs to be done on a PC.
Security settings on a PC that Block Pop-ups can prevent the Symptom Checker Email option from working.
THE SURVEY IS CLOSED. The following details are only for record.
Click the orange box 'Symptom Checker':
In the left-hand box enter your details and symptoms:
Click 'Add Symptoms' to add more symptom boxes
When you finish entering your symptoms, Click the 'Search' button at the bottom of the LEFT-HAND box (you might have to scroll down to see it if you entered a lot of symptoms).
when the results appear, in the right-hand box click 'Email':
In one of the email address boxes type
(or copy and paste)
In the Comments box type your physician diagnosed illnesses in the order you were diagnosed with the earliest one first. Without this information a submission cannot be used. Only include these illnesses:
Lyme, ME, CFS, FM
Symptom categories reference list to aid memory:
Mental and mood
For support and information about
Lyme borreliosis see:
Lyme Disease UK Patient Support
Lyme Research UK
International Lyme and Associated Diseases Society
For support and information about M.E. and CFS see:
ME Support UK (facebook)
ME Association (UK)
For support and information about Fibromyalgia see:
Fibromyalgia Support Group (facebook)
Disclaimer: VIRAS is not associated with Isabel Healthcare though we appreciate the online services that they provide. VIRAS do not provide any medical services or individual advice. Participation in the survey is voluntary and cannot provide a diagnosis. It should not be considered medical advice. VIRAS accept no liability for participation.
Back to VIRAS page