Just a thought. Is it possible that Phoenix rising could send out an email to anyone who is still a member or who was once a member, asking them do they consider themselves cured or say at least 90% cured now. And what exactly do they attribute their success to. Apologies if this is a daft suggestion.
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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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treatment outcomes survey?
- Thread starter ruben
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Hip
Senior Member
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- 17,901
It's an interesting idea, though might fall foul of European GDPR privacy laws.
Sushi
Moderation Resource Albuquerque
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- Albuquerque
Yup, I believe Hip is right.
andyguitar
Senior Member
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- South east England
I think it's a great idea @ruben but the website would almost certainly be breaching the UKs Data Protection Act. But a member could do it as there is nothing to prevent one member contacting others. Could be a bit of a long job though!!
Pearshaped
Senior Member
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- 580
What about a simple medication-Poll, where most widely used meds for ME/CFS (like those who are described here on PR) are listened and patients can vote for ONLY one (or two) they think has helped them most(all in all) ?
Hip
Senior Member
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That's actually something I have been working on (using Google Forms): an external poll which covers all the major treatments used by ME/CFS doctors and patients, and asks people how much improvement these treatments made for them.
I like to quantify improvements by the number of levels than patients move up on the scale ME/CFS scale of: very severe, severe, moderate, mild, remission. Even if you move up just one level (eg, from severe to moderate), that is a major improvement which has a big and welcome impact on your life.
A smaller version of this poll can be found here; you can see that Valcyte came out very well in this poll, moving 50% of patients up by one level on the scale.