Search found 994 matches

by Camp Other
Thu 31 Jul 2014 5:06
Forum: General Topics
Topic: Patient-Formulated Lyme Disease Survey Draft
Replies: 357
Views: 47734

Re: Patient-Formulated Lyme Disease Survey Draft

While I decided to place more of my input here on the draft, I noticed that members were continuing to post ideas for the survey on the patient-centered thread. Are we going to continue to post about the survey in two separate places - or did I miss something and have the two separate threads transf...
by Camp Other
Wed 30 Jul 2014 22:09
Forum: Lyme Café
Topic: Seriously-Suicide is Optional
Replies: 12
Views: 6268

Re: Seriously-Suicide is Optional

Did a search on existing LNE threads on suicide and figured this one as as good (if not better) as any to re-open this discussion because it's been at the front of people's minds lately in the Lyme community... On another recent thread, velvetmagnetta wrote: I, and many others, experienced or are ex...
by Camp Other
Mon 28 Jul 2014 21:22
Forum: General Topics
Topic: LymePolicyWonk: Patient-Powered Research and Lyme Disease
Replies: 132
Views: 22871

Re: LymePolicyWonk: Patient-Powered Research and Lyme Diseas

Drafting the survey, and exercising it are two different things. Certainly, you have to build the survey with administering it in mind. But often the two functions are done by distinct groups. I'd feel immense satisfaction if we can just build a survey that asks the right questions of what actually...
by Camp Other
Mon 28 Jul 2014 20:20
Forum: Medical Topics
Topic: PTLDS Issues
Replies: 29
Views: 8076

Re: PTLDS Issues

I am astounded by the sheer arrogance it must take for a non-psychiatric MD, NP, or PA to diagnose a patient with "Somatoform Disorder". Hi velvetmagnetta. Welcome to the club! To their credit: Diagnosis of Somatoform Disorders To accurately diagnose a somatoform disorder, a thorough physical exami...
by Camp Other
Mon 28 Jul 2014 19:47
Forum: General Topics
Topic: LymePolicyWonk: Patient-Powered Research and Lyme Disease
Replies: 132
Views: 22871

Re: LymePolicyWonk: Patient-Powered Research and Lyme Diseas

If anyone can take the survey, then the results are less reliable. If those who have been identified as having had Lyme disease - even if only a clinical diagnosis, and serology was negative - then the reliability improves. I agree with you, but the way I see it, who you ask and what you ask are tw...
by Camp Other
Mon 28 Jul 2014 19:21
Forum: General Topics
Topic: LymePolicyWonk: Patient-Powered Research and Lyme Disease
Replies: 132
Views: 22871

Re: LymePolicyWonk: Patient-Powered Research and Lyme Diseas

By the way, HIPAA is an American construct. If you offer a survey online to an international population, you'll need to familiarize yourself with medical privacy rulings from every country and design a survey that acknowledges those rulings. Either that or only accept entries from specific countries...
by Camp Other
Mon 28 Jul 2014 19:12
Forum: General Topics
Topic: LymePolicyWonk: Patient-Powered Research and Lyme Disease
Replies: 132
Views: 22871

Re: LymePolicyWonk: Patient-Powered Research and Lyme Diseas

However, I think one has to somehow determine that those who take that survey have had Lyme disease and been clinically diagnosed with it at the very least - even if they only had partially positive serology and didn't meet the CDC band spread for positive. Or even if they were negative, but had a ...
by Camp Other
Mon 28 Jul 2014 18:55
Forum: General Topics
Topic: LymePolicyWonk: Patient-Powered Research and Lyme Disease
Replies: 132
Views: 22871

Re: LymePolicyWonk: Patient-Powered Research and Lyme Diseas

I honestly think we're tripping over our feet because there's been some argument as to who has Lyme disease and who does not - let alone who has CLD/PTLD.
by Camp Other
Mon 28 Jul 2014 18:52
Forum: General Topics
Topic: LymePolicyWonk: Patient-Powered Research and Lyme Disease
Replies: 132
Views: 22871

Re: LymePolicyWonk: Patient-Powered Research and Lyme Diseas

Duncan: I'm almost embarrassed to admit that I overlooked an absolutely vital essential feature in the development of a Lyme disease specific questionnaire, namely, a precise definition of CLD/PTLD as a distinct clinical entity so that it can be distinguished from other medical conditions with simi...
by Camp Other
Mon 28 Jul 2014 18:19
Forum: General Topics
Topic: LymePolicyWonk: Patient-Powered Research and Lyme Disease
Replies: 132
Views: 22871

Re: LymePolicyWonk: Patient-Powered Research and Lyme Diseas

Duncan: "...... Lyme disease with persistent symptoms that have proven refractory to recommended treatment." Yes, but are the persistent symptoms you suggest SPECIFIC for Lyme disease? Couldn't they also be due to a neuroblastoma, MS, ALS or some as yet to be identified neurotropic virus etc? You m...