Diagnostic criteria FMS

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Rockon
Regular Member


Date Joined Mar 2013
Total Posts : 269
   Posted 2/22/2018 9:02 PM (GMT -6)   
Published in
Ther Adv Musculoskelet Dis. Jan. 2018

/www.ncbi.nlm.nih.gov/pmc/articles/PMC5724646/

Post Edited (Rockon) : 2/26/2018 9:29:59 PM (GMT-7)


Rockon
Regular Member


Date Joined Mar 2013
Total Posts : 269
   Posted 2/26/2018 10:36 PM (GMT -6)   
Twice I have complained about my thread disappearing from the healingwell search feature. The one titled "There are markers for inflammation being found in fibro."

Twice after I complained, it could be found again. But once again, days after complaining, after it appears again, then once again does not appear when searching any form of "fibromyalgia inflammation"..
XXXXXXXXXXXXXXXXXXX




XXXXXXXXXXXXXXXXXXXX




Post edit.
The thread is now appearing again in a search.
To the person responsible for these disappearances:
_______
I decided to delete that portion of this comment^^^. It was possibly pointless.

Post Edited (Rockon) : 2/27/2018 4:31:45 AM (GMT-7)


Ljm2014
Veteran Member


Date Joined May 2014
Total Posts : 2189
   Posted 2/26/2018 11:13 PM (GMT -6)   
I was told that we have inflammation, that does not appear in the bloodwork, but is in the cells of the central nervous system... i tend to believe it because , without some type of anti inflammatory, i stiffen up badly..just something i was told by a head therapist, he s a bit of a genius and studies everything to try and help his patients.

Rockon
Regular Member


Date Joined Mar 2013
Total Posts : 269
   Posted 2/27/2018 7:31 AM (GMT -6)   
At 9:36 pm I posted about this problem.
At 4:31 am I checked and it was fixed, and I wrote an edit saying so. Now I have checked it again. It's 2 hrs later,. and the thread disappeared again from the search feature entirely again. I try doing searchers for the researchers names, and the thread will not appear.

wayup
Regular Member


Date Joined Nov 2013
Total Posts : 38
   Posted 3/1/2018 1:34 AM (GMT -6)   
This is a little crazy. Why don't you think about regularly posting a study related to inflammation, and link to the main inflammation thread within each post that you do? Maybe that improves the odds for people seeing it, who might actually need the information.

I just did the search, and it's not turning up (your first complaint about the situation turns up right away. Which is pretty ironic.)
I have to wonder:
How?
Why?
Who?

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17759
   Posted 3/1/2018 7:00 AM (GMT -6)   
Rockon, I just used the google custom search and your posts seemed to be there. When someone edited your thread, did you catch the name! If so, please email me and let me know there...not on the open forum. Then I can speak to the mod that is doing this.

I will say that our administrator is working on the site to update it. Maybe in the process things are getting messed up and then he corrects it.

No one should be deleting your threads on this. As we all know, medical knowledge changes as more is known on an illness. Right now they are saying fibro isn’t an inflammatory illness...probably because some fibro patients show no inflammatory markers in their blood work but still have pain. Maybe down the road things will change as they learn more about this illusive illness. What LJM posted does sound feasible. But please know it isn’t me editing or deleting your information.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Rockon
Regular Member


Date Joined Mar 2013
Total Posts : 269
   Posted 3/1/2018 11:22 PM (GMT -6)   
Sherrine, Hi, I did a search a few minutes after your post. Searched for fibromyalgia inflammation. The thread I am concerned with did not turn up. I didnt check through the day, but now, once again, the search will find the thread.

Maybe there was confusion. No one has edited this thread but me. I edited the first post down to just the study link. (Removing my quotes and comments.) But thanks for your concern in that regard.
-----
Wayup, I should have said thanks to you and Acheybody for responding on the other thread. It's always great to get feedback, and then I should have gotten back to you two. I appreciate you both.

Yeah, that might be a good idea you habe there. It's not what I want to do with my time; there are so many new topics to read about, after all. But I am already spending time to.be sure my post can be seen, so maybe it's 6 of one, half a dozen of the other.

Take care, everyone. Its a good day when I can force myself to pay bills and straighten out issues that are related to that! Progress is always a relief, it was the starting that challenged me this last month. Really screwed up. Too. One day they turnwd off my ekectric. Well all was well. No fines. I paid by phone, and it was back on in minutes. So glad I realized it was offduring business hours. Rather than at night, realizing by waking up cold. And I didnt have to be quite so disgusted with myself! Self Forgiveness is good.

Post Edited (Rockon) : 3/1/2018 10:46:26 PM (GMT-7)


Rockon
Regular Member


Date Joined Mar 2013
Total Posts : 269
   Posted 3/2/2018 1:39 AM (GMT -6)   
The thread once again does not appear in a search.

Or is this personal?
Does someone at HealingWell disagree with the science I posted? If they do, the proper way to voice their disagreement would be to make a post about their beliefs. You are free to write a post here.

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17759
   Posted 3/2/2018 7:27 AM (GMT -6)   
This has nothing to do with someone disagreeing with your posts. It could be the way the google custom search works. Maybe your thread goes further down the list and then back to the top. Perhaps it rotates because there is so much info on this site. Please don’t take it personally. If it keeps reappearing then no one has done anything to it.

We do allow people to voice their opinions...unless it could be harmful to members. So no worries there either! Your threads are on the site.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Rockon
Regular Member


Date Joined Mar 2013
Total Posts : 269
   Posted 3/2/2018 10:08 PM (GMT -6)   
Sherrine
If I run a search with words in this order:
"Inflammation fibromyalgia", a thread titled "Should I call my RA tomorrow?" always turns up.

Here page 36 of the board of thread titles.
/www.healingwell.com/community/default.aspx?f=24&p=36

See there that "Should I call my RA tomorrow?" has 625 hits.
On that same thread title board, on the same page, just 3 titles lower, is my thread "There are markers of inflammation being found in fibromyalgia".
It has 5000+ hits.

"Should I call my RA tomorrow?" always turns up relatively early in a search for "inflammation fibromyalgia".

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17759
   Posted 3/3/2018 7:08 AM (GMT -6)   
Obviously people are reading your thread and that’s what is important.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

wayup
Regular Member


Date Joined Nov 2013
Total Posts : 38
   Posted 3/3/2018 12:07 PM (GMT -6)   
By the way, the inflam. thread is back.

Post Edited (wayup) : 3/3/2018 12:22:30 PM (GMT-7)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16304
   Posted 3/3/2018 2:12 PM (GMT -6)   
Once a post gets deleted its gone!! It cannot ever be brought up again as it no longer exists. Since Rockon & way up are able to get the posts to reappear at times it is a glitch in the system. Healing Well is running off of a very old format & it has more than it's fair share of glitches as a result of being so outdated.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Post Edited (straydog) : 3/3/2018 1:25:32 PM (GMT-7)


Rockon
Regular Member


Date Joined Mar 2013
Total Posts : 269
   Posted 3/3/2018 11:44 PM (GMT -6)   
Hi straydog. I appreciate that you are trying to explain somethinv, but you are confusing two separate issues.

One is that Sherrine thought I also complained about parts of this thread having been deleted. I was not complaining about that. I had deleted parts of this thread myself.

I am unhappy about the supression of an inflammation research thread from site search results. I have not meant to imply that the thread is ever deleted. I can always find it on around PAGE 36 of the thread titles board. But for periods of time it won't appear in a site search for it. I complain, and it once again becomes searchable/findable. Then, like the other night, I write "The thread is now appearing again in a search." And I look for it again two hours later and it is gone from search results. I complain again, and it's back.

The timeline, because the timing is mighty suspicious (the timing may change now).
--------------------

On 12/22/2017 3:52 PM  I complained that it couldn't be found in a ste search. The next day it could be found.

On 2/27/18 I needed it again, and realised it was missing again. At 9:36 pm I posted about this problem.
On 2/28/18 at 4:31 am I checked and it was fixed, and I wrote an edit saying so.
2 hrs later I do the search again and the thread had disappeared again from the search feature entirely.

At 6:31a.m. I complain again. I am complaining that it can't be found if someone wants to do a search about research findings about inflammation in fibromyalgia.
It's not a complaint that its deleted. I can always see it myself now when I need access to some research in it.. It's never been deleted. Now I am saving the link to the thread on my phone, AND saving the link to page 36 of the titles board. But it should *Always be searchable.


3/1/2018. 6:00 AM Sherrine comments.
"Rockon, I just used the google custom search and your posts seemed to be there..."
It's still 3/1/18 10:22 PM
I write "Sherrine, I did a search a few minutes after your post. Searched for fibromyalgia inflammation. The thread I am concerned with did not turn up. I didnt check through the day, but now, once again, the search will find the thread.
 
about 2 hrs after I said it was searchable again (it could be found using the search feature), it disappears from the search results. By now the date is 3/2/18, its after midnight. I post a complaint. 12:39 a.m.

3/2/18 still. Sherrine responds in the morning.
3/2/18 I reply and complain again at  9:08 PM

3/3/18 4:15 a.m. I check and the thread can be found in a search. I don't post, tho.
Same day, wayup remarks that it can be found in a search. mad

Post Edited (Rockon) : 3/4/2018 1:27:38 AM (GMT-7)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16304
   Posted 3/4/2018 6:25 AM (GMT -6)   
As I mentioned before the format & system here at Healing Well is extremely outdated & certainly not without its glitches. I looked for a post last week & never could find what I was looking for. The post in question was about a month old. None of the mods have any control over how the system operates.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17759
   Posted 3/4/2018 7:28 AM (GMT -6)   
Rockon, I’m not a happy camper right now. Your implying that HealingWell is suppressing your thread is ridiculous. Our administrator started HealingWell many years ago because he couldn’t find information about one of his illnesses. He always is open to information about illnesses. And I told you I’m not suppressing your information too. So please stop the conspiracy theories.

Did you notice that when you put either “inflammation fibromyalgia” or “fibromyalgia inflammation” that there are 14,700 threads with these words that come up? Everyone that wrote these threads think what they have to say is important too! I’m actually amazed that your thread does come up on the first page sometimes by using just those two words! Google brings up any thread with one or both of these words in them. This should tell you that you need to be more specific. So, when I search “inflammation in fibromyalgia”, guess what? Your thread is not only on the first page but also is the first thread on the first page!!! This happens every time I type in “inflammation in fibromyalgia”!

This is how you use Google searches...even off this site. I do a lot of Google searches and can find information almost immediately. So I do think you owe HealingWell an apology for implying we are suppressing your information and manipulating it according to your complaints. As I said in all my posts on this thread, it is not happing.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Post Edited (Sherrine) : 3/4/2018 8:12:19 AM (GMT-7)


Rockon
Regular Member


Date Joined Mar 2013
Total Posts : 269
   Posted 3/4/2018 11:13 AM (GMT -6)   
Sherrine.
I have been complaining about this for a fair amount of time. Because it happens repetitively now. That you say you are not a happy camper...well you will notice that I have been saying that I am not a happy camper.

Please do not lock this thread in the usual fashion. Please.
I spend literally hours and hours doing the research work I have done. I have no idea how many hours were soent on that thread. Most people know it is important to me, since I have said so.

Perhaps you would want to know exactly how specific I had made my alternative searches, proving to myself that the thread will not turn up at those times.. I think using the unusual (unusual in the USA) names of two researchers is specific enough: "Kadetoff Cordero". Those are names I have used in the search box. And I have tried "Wallace and Kosek". Multiple combinations of words proved to me that it was not going to turn up at those times.

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17759
   Posted 3/4/2018 11:18 AM (GMT -6)   
Rockon, the issue has been resolved. I’ve checked it about ten times since 7 AM and it ALWAYS is the first thread in the first page. I don’t know what else you want! If someone typed “Is there inflammation in fibromyalgia?” , and even used a question mark which you really should not do, it still is the first thread on the first page! It can’t get easier than that.

The problem is solved. Your thread is there and it’s searchable. Even my thread on how most of the medical community says there is no inflammation with fibromyalgia...even went so far as to change the name of the illness...isn’t on the first page and I’m a mod! I checked the first 10 pages and it’s not there but I’m not losing sleep over it because it’s there somewhere and I would need to change my search to find it.

I never saw an apology from you for the conspiracy accusations you made about this wonderful site. That speaks volumes. I am locking this thread...”in the usual fashion”. Enough space has been used on this issue. I promise I will periodically check to see if it’s still coming up like that.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Post Edited (Sherrine) : 3/4/2018 10:24:12 AM (GMT-7)

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