Discussion in 'General ME/CFS Discussion' started by Tired of being sick, Feb 9, 2015.
Should Members with a post count below 100 be able to post CFS/ME "cure" claims?
I don't think anyone should post with a "cure" claim. Maybe if its 10 yrs from the time of improvement but a year or two isn't even the standard of cure with cancer
As long as the writer follows the forum guidelines of NOT blatantly advertising their own product or paid advice, what the heck, post away. Do we really need to be forum Nazis and try to control what others post? Freedom of speech, please.
The answer to this question is 'yes' any member, no matter what their post count is, may start a thread about what they feel has cured them. As long as members do not breach the rules, they can post whatever they want. The moderation team, being Sushi and myself, vet all new members and ban spammers and advertisers. If a member feels that somebody has come here to promote THEIR OWN product/book then click on the report button and we will investigate.
For those who have not done so yet, please review our rules to see what is allowed and not allowed on Phoenix Rising.
I just don't like people using the word cure. What is the definition of cure for us? Cancer patients are not considered cured for 5 years. When someone has felt good for a few months, how is their status defined? Cured, remission, good patch? Is there a specific criteria for us?
I don't think this is the right question. I would rather they didn't post a claim of cure, regardless of how often they posted, if all they have is anecdotal evidence. Now I have to be specific here. This is not about whether or not they are cured, but whether or not we can trust the claim when expanded to the general member population. Claiming an hypothesis is far different from claiming a certain cure. Its also different from claiming remission.
I have no problem with people saying they got better, they think its because of A, B, C, and they are interested in discussing it. However they need to realize we will regard such hypotheses critically, both in support and against. This is about finding the truth of the hypothesis and its limits.
Some claims I am extra suspicious of though. Usually any form of "if you believe it will be so" claim, or of mind over matter cures, I will regard with deep suspicion and ask about the hard physical evidence. Even PACE fails under that level of scrutiny.
The relapse rate is high. I don't think "cure" is at all appropriate at this point.
That is why I voted no.
If somebody has a credible story of significant improvement or even a cure, then I want to hear about it.
I like to hear what people say works even though we know what works for one does not work for another
What people are saying helped is a purely subjective observation not based on anything but how they feel. It's great they feel good but imo that is not a cure.
I felt really good a few years into my disease and I was taking absolutely nothing. That doesn't mean I was cured.
My objection is using the word cured vs remission
I have to agree and I don't want to miss out on hearing of anything that could possibly help me. I read about it and then make my own decision. I disagree with using the word "Cure" as there is no cure for this illness. But if someone legitimate with similar symptoms to my own found something that helped them, then I want to know about it!
I see the point in contextualising "cures" but also in allowing freedom to post, should there be two tiers in that subforum perhaps ? one only available to people who have been members for X amount of time or made X amount of posts and replies (whichever the forum is capable of using for criteria)
- maybe we should be talking about remission considering the number of people here who have mysteriously had massive improvements in function only to go off the cliff again in a couple of years .
I think there should probably be a subforum in the cured/better/remission section that says "new member recovery stories" or something similar.
getting technical now but is it possible for the posts in a subforum to be set to question the original poster with a couple of compulsory answers that will be at the top of the post ? if so , they could list which criteria they qualified for CFS diagnosis under, number of years with CFS and then number of months of remission.
all depends on the limits of the forum i think.
Why make things more complicated? Wouldn't this make more work for the mods?
Let each post stand on it's own merit. The posts that make outrageous claims or are selling something usually become readily apparent.
We can ask questions about the treatment, how long they've been sick and get clarification from the OP will give the same information.
But making new members jump through hoops to might seem off putting as well as nonsupportive to others who want to join.
Some of the new threads could provide useful information.
I would hate to see the forum ever moderated so that free speech on cures was removed... that being said thou I have a pet hate of the word "cure" being used if a person isn't back to how they were before this illness. I so often see this word used when a person is only 90%-95% improved or still having to be careful, that though isn't cured
Also I don't think the word cure should be used before at least several months or more go by with no signs at all of this. Its like cancer.. people aren't seen as being cancer free until they've been in remission for a certain amount of time. It isn't unusual for people to have remissions with this but get it back (Dr Cheney has talked about this pattern and I myself have experienced that).
You can also try a Google Site Search
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