Pain Management Community
how did we get off our purpose?
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This patient support community is for discussions relating to pain management, chronic pain, arthritis, back pain, cancer, headaches, movement disorders pain, and muscle pain.

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how did we get off our purpose?

Our descriptor says "patient supported"--and three months personal experience w/pain--we're not "ask a doctor"place! How do we take back our community?
19 Comments Post a Comment
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875426_tn?1325532016
I think the patient communities are for people to share experiences as well as answer other's questions out of our own experiences.  I guess if you want to expand it in a way you are not seeing, you might try opening threads asking people to share what you would like to see them sharing about?

If a person addresses a doctor on a patient forum, you might refer them to the professional forum side of things, even providing them a link for the correspondindg medhelp professional forum, though it could cost them some money, I think, to get an answer.  On certain patient forums, I've seen doctors kind enough to answer some questions for free.
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Avatar_m_tn
you just said it perfectly---"answer others questions out of our own experience"  and to share experiences. This is a community not a forum---read the guidelines and descriptors of this community at the top of the page. I would love a doctor who experiences chronic pain to shaere for sure. Read the current posts---none of them here do that--and some just confuse the poster with medical terminology right out of a reference book. I don't want to "expand it in a way i am not seeing" i want it to conform to the guidelines posted for all to see. And i agree with you---we can do what we can for them---of course. Thanks for youe energy and your response livinginhop.    omhome.
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875426_tn?1325532016
The third definition of forum on Webster's speaks of the availability of place for the discussion of questions or matters, so I think that definition fits in pretty well to the description.

Noticed after I posted that a couple of professionals are posting in this community, and many likely welcome the professionals responding for free.   I think professionals should keep in mind that many are not educated in medical terminology when formulating their replies.  They may not all be able to relate from personal pain experience, but definitely can contribute to assisting people with guidance on pain management.
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Avatar_m_tn
thanks again living and i have to agree about the free thing. And any help we can give of course we will.  Again  This Is Not A Forum!!!!   Community---like minded---shared experience etc. Chronic Pain---at least three months! Most of us are into years of pain. Sharing experience----sharing our way to deal with it. How did it come about we answer questions about "woke up and my foot hurt--what to do? with medical jargon for two paragraphs. My guess is they are fulfilling some requirement by U.S. to get a license here---like work in a "community" for two years!!!! OK so i'm paranoid---least of my worries.  What do the rest of you guys think?
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875426_tn?1325532016
For some reason, Medhelp uses Forum and Community interchangeably- note this page: http://www.medhelp.org/forums/list

I think there are a number of doctors from India that come on here.  India has great need for them with its large population.  I don't know motives, but if they help people on here, that's important.

Please see a suggestion I made on this thread, because I think a lot aren't realizing this as a chronic pain management section:

http://www.medhelp.org/posts/Pain-Management/Is-there-not-an-actual-Pain-Management-Dr-on-MH/show/1853905?personal_page_id=862335

Know too that the Report with the triangled exclamation point to the upper right on each post can be used to report anything you feel is miscategorized.
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Avatar_m_tn
Thanks for that info. Alright then any doctors want to post in? That would be great. What do the rest of you guys think?
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Avatar_m_tn
and i think it is more "important" to support those who need it most---and that would be their home country India-----and ummm--livinginhope---i think most of us can see that big red thingy over on the right and it does say report sooo--were you being funny--or do you think i am that dumb?  
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Avatar_m_tn
i just researched old posts a little and guess what! the posters that the docs answered just seem to disappear after. Other "real" posters seem to post again at least a few times. Kinda weird doncha think??
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875426_tn?1325532016
I know people who are non-professionals who reside in India also post on Medhelp and are seeking answers to questions.  I think we should leave it up to the professionals as to how they want to allocate their time.

Regarding reporting miscategorized posts, I was trying to be helpful, actually, in case you were unaware of the report feature.  I noticed a number of posts that did not fit the welcome post description of the community and went on to report more than one myself as miscategorized.  Your example above of someone posting on this forum about waking up and their foot hurt and wondering what to do assuredly was an issue that wouldn't have fit in to a chronic pain category.  I apologize if I gave you the impression I thought you were stupid.

I got responses from Medhelp on this thread re: the name of the community:

http://www.medhelp.org/posts/Improve-MedHelp-Suggestions/Change-the-name-of-a-community/show/1855549?personal_page_id=862335

As to people who disappear after- I don't regard it as weird at all if you mean outside the norm.  As a non-professional answering people's posts, I'd guess about eight out of ten do not post back on the thread.  This can be discouraging, but I've grown to expect it.

Perhaps either the professional gave the information the person who posted was seeking or the person with the issue who posted did not come back and check to see if anyone had responded.  

I have noticed at times with professionals that a person will post back to the professional and often times, the professional does not come back and reply to their follow-up.  This is unfortunate, but when it is on patient forums, the fact that they contributed any of their time to respond in the first place can still be viewed as a blessing if they addressed any part of the person's concerns.
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Avatar_m_tn
not if they mislead the person---not if they aren't professional! Just because it says M.D. doesn't mean much as you probably know. So i am not sure where you are finding all these professionals.
     My question is "how do we take back our community?". What do you suggest.
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875426_tn?1325532016
If they don't address a concern properly, that's not a good thing.  

Maybe there needs to be a moderator keeping a tacked up announcement like they have in the groups (like Migraineur's group) where it always shows at the top above everyone else's posts.  It could say- please read this before posting (in the title) and give guidelines, including not to expect professional responses in this community section and to please post replies in easy to understand language.  That would cover those who go directly to the community.  However, there is the answer question feature accessed from our home pages that can easily mean they never would view that bulletin.

I think professionals answering in patient communities is a positive thing, unless that professional is proven to be a detriment by either giving out bad information or hampering others participating in a community.  I imagine the procedure would then be to report to Medhelp the concerns about that individual, though I admit when I had an issue with a professional a long time ago, I may have just ceased posting in that particular community without reporting my concern.

There are many communities where I think a lot of questions can go unanswered by anyone at all- I've had it happen to me with the first question I ever asked on Medhelp.  I think it's Medhelp's job to screen professionals and weed out any who they deem to be liabilities rather than assets.  I think Medhelp has a disclaimer about any advice given here, regardless of who it's given by, so that likely ought to be prominent in the tacked bulletin at the top of the community board.

Examples of professionals posting- there is a professional in the patient community for eye care I've noticed (had one answer me there one time) and in the past, there was a professional pretty regularly posting replies in the Undiagnosed Symptoms forum.
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Avatar_m_tn
i am with you livinginhope------you bring up in a sense the old "buyer beware" tag thatnowadays seems to apply to everything---beware someone is going to cheat you for $$$$. I know---pessimistic fer shure. Have you noticed there is a consistent misspelling of words (and not the right ones) in a number of the iffy 123 or xyz posters who give no personal info even when asked? Buyer beware? Maybe MH needs to monitor that too----but the problem becomes the $$$$ to pay for MH to do all that ?"monitoring". Always a catch. Buyer beware. I am so negative for a "think positive" teacher---makes me laugh! Makes me cry!   Anyway---good point (points) there livinginhope.  om
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Avatar_m_tn
well---it is just you and me it seems. So let's keep brainstorming about some things we'd like to see to help us but also to help MH get more and more folks coming here. More the merrier and the more the energy---healing energy. Hey?  Why can't it happen here at MH. And what is the
"it" that could happen?
     What i started to offer is this:   What if MH had a little box or window somewhere (i've seen this put at the bottom) that displayed who was on MH at the time!!  Not nercessarily posting but reading etc.   It is really cool to know that as a discussion can start and more will come "on" when they see
who is there. Doncha ya think that would be cool?    
OTHER People Where Are You or do you care? (ok---a little prod---sorry) omhome
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Avatar_m_tn
DO you see what i mean--this morning a question about suboxone for a dog??? And from an "iffy" poster--if he is real? Is there a "screen" for these posts?
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Avatar_m_tn
WOW! what about the guy asking about flossing and rinsing?? Chronic pain? Hey? 16 yrs old--poor kid! And i mean it if they are real i worry for them as to why they are reduced to asking here--do they have parents--a doc---man!
Safest i guess is to act like they are real with real problems (in their perception) so compassion is in order and never hurts. Humor is a little risky (i got in trouble with mh once for that!) but So Much Fun--and healthy.  What? Do? Or? Do? You? Think? HA!               omhome
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875426_tn?1325532016
I go on another site that shows who in the community is online- it is nice to know there are others on if you are familiar with who those others are.

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Avatar_m_tn
it is probably a simple program MH could have if enough of us made our desire known! How about it you guys---it would be a big help to us so post in your request! OK?
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Avatar_m_tn
let's all focus on  pain and on chronic pain---please post in your ideas.
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3147776_tn?1349200103
Hi - if you have suggestions for improving the MedHelp experience, you are welcome to post them in our Improve MedHelp forum here:
http://www.medhelp.org/forums/Improve-MedHelp-Suggestions/show/110
or, you can contact our Community Manager directly by PM:
MH Community Mgr

Additionally, there's a "contact us" link at the bottom of each page.  If you have questions or concerns, that's the best way to express them rather than in our medical discussions.

Our Experts do drop by the P2P forums from time to time, and they're as welcome to participate here as our "regular" members.  

*************** THIS THREAD IS CLOSED ***************
NO MORE POSTS, PLEASE.
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