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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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What has helped you the most - SURVEY (the first of many)

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wabi-sabi

wabi-sabi

Senior Member
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1,489
Location
small town midwest
Nuno said:
Guys my intention is to help everyone, if you dont want then dont do it, it is simple

I understand the frustation of being sick, I lost everything myself, but you're coming at the wrong guy.
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Actually, we want to help you too since we are all invested in this info. Yes, there's some worry about privacy concerns and anonymity.

But I think the main question is survey design. Think of what we are trying to do here is building you a better survey. You'd think writing a survey would be easy to get at the info you want, but actually it's not. Any survey you meet in healthcare has gone through loads of revisions, tests with patients and healthcare people to make sure it works to get the correct info. Think of the feedback you're getting here as a revising with experts stage to make sure it will get the best quality info. For our part, we'll try to give constructive criticism and not just tear into you. You might also pass the survey around to other ME/CFS sites to make sure you don't get too much similar opinion here.

Here's an article on making surveys for healthcare: https://learn.uvm.edu/blog/blog-health/how-to-design-public-health-research-surveys
 
H

hapl808

Senior Member
Messages
2,116
lint7 said:
Knowing that 10 people benefited from one treatment doesn't mean all that much on it's own, but if all 10 people who tried it benefited from it, that is valuable information. If 10 people benefited out of 100 who tried it, that is a totally different story.
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This is incredibly important. Otherwise if 10 people all picked one drug as the most helpful, but it's missing that 30 people found the drug the most damaging, then it could be dangerous.

As others have mentioned, that's a very short list that doesn't include 90% of what I've tried.

Regarding privacy concerns, I would recommend people at least make separate emails for their ME/CFS world. Google still probably knows what you're doing anyways, how many minutes you spend on PR, etc. Anything that Google doesn't know, Facebook surely does.
 
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