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CatchMyPain Community and Pain Diary App to manage chronic illness

Community Improvements?

Jun 09, 2015 4:35 AM

Hi everybody,

I am very glad to see that the community is so active. The kindness you share and the support you provide is amazing! I guess the only thing that needs improvement is the community functionality itself ;-) Therefore I am inviting you to share your thoughts about how we can improve your community experience.

Here are some questions that we are especially interested in, but feel free to suggest anything else which is related to the community (but please no pain diary suggestions in this topic):

- There is a lot of content. Can you easily find those discussion threads which interest you most? What are you looking for?

- Other forums organize topics into groups e.g. "Family", "Doctors", "off-topic/fun". Would you like us to introduce such categories? Which would be the most important ones?

- There are a lot of different medical conditions. Should there be a room for discussions only about a specific condition? What would you like to discuss?

- If you are active in other communities: What are the things they do better than us and what are the things that we do better than them (feel free to mention the names of those other communities).

- Have you ever had a "Wow moment" in the community? What was that wow moment? (a "wow moment" is a moment in which you think "wow, this is amazing" or "wow, that's exactly what I was looking for".

I am looking forward to reading your feedback and suggestions.

For those who prefer to answer by email: contact@catchmypain.com

Kind regards,
Daniel

Jun 09, 2015 7:55 AM

Good morning Daniel.

Discussions: If I'm looking for a topic I started then I search for my name; someone else then I search their name. If I'm looking for a specific topic then I type in the topic, like sjogrens or arthritis, or TMJ, even meds. The search tool is simple to use. It does of course open every chat, even those older than a year. It would be nice to select a time frame for the search, like # of months/weeks old.

Groups: Personally speaking I'm not sure about the topic groups/labels. Many of us share experiences, and sometimes it gets off topic. But most times it stays on track. And even in a medical discussion, when someone is struggling with (doctors or pain issues) others come in to even give uplifting support and sometimes add humor or laughter. Others might see it differently, but I can't think of anything right now.


Medical Conditions: Too many conditions intercross with others. Are you talking about the part of the body affected, or the diagnosis?

Other Communities: I'm not in other chat forums for medical conditions & pain. Can't provide feedback.

Wow moments: I've had multiple wow moments when someone posts a topic and others respond, then I'm reading it, and it's like "Wow,"... I didn't know that, or... I need to check that out... ask my doctor, etc.

Sorry I don't have much to offer in suggestions. Maybe others will. Right now I'm in a brain fog and my coffee isn't strong enough! πŸ˜‰ LolπŸ™πŸŒΌ

Jun 09, 2015 10:45 AM

I think that we all have been begging foe a way to instant message people. Next it bugs the crap out of me when someone asks for advice or introduces themselves and the response they get is -well I have .......and it almost makes light of their issues. I know that it is not meant to come off that way. Maybe we just put our diagnosis on an about me link so that those of us that are active on the site can skip that part. As far as topics we can all start any thread we wan. I do not think it has to be built in. The statistics page or the graph is very cumbersome. I think numeric values would be easier to read. Just my two cents. Thank you all for everything. I love our community and yes, we have a great core group.

Jun 09, 2015 12:07 PM

I've liked the community a lot so far, and I am in other groups/forums about chronic pain. Sometimes the diagnosis specific topics are helpful, but in those cases I just go to the other groups.
In here I usually put more general topics, like family issues instead of asking what people do when the crps flares, or finding out how other teens cope.
I'm not sure how to make it better, but it'll be interesting to see what happens.

Jun 09, 2015 12:36 PM

Having specific areas for certain diagnoses might be helpful for newbies to find their way around, or for those who are looking for support and advice from people with the same problem. Then we could have just a general area for topics that don't fit anywhere else. Off Topic area even. It gets kind of confusing with just having everything in one area for me sometimes. I would really like to see a messaging component though! Personal Messaging, and maybe a chat feature. Profiles where we can actually say a little bit about ourselves.

Jun 09, 2015 12:40 PM

Being able to post pictures in our responses would be great too, and being able to edit our posts!

Jun 09, 2015 1:22 PM

Oh, actually if you could add a feature to post links, or be able to copy them into a browser in the tablet

Jun 09, 2015 3:18 PM

Editing and searching posts would definitely be helpful.

Jun 09, 2015 6:33 PM

I have given up for the most part on participating in this forum because I have found it to be overwhelming filled with chit chat rather than true discussion about pain issues and solutions. Its turned into peoples chat forums and it is difficult to wade through it all to find anything worth reading or providing possible help for others through my experiences.

I may not be as sensitive as others but I personally don't need someone to provide me hugs text through this forum or express to me their religious beliefs. I would get a lot more out of this forum if it were just real discussion about experiences with things that have helped others or questions raised from those who are newly experiencing chronic or acute pain.

I would find it helpful if there were a separate chat forum from the question/answer forum for which I believe was the true intent of the community forum.

Jun 09, 2015 6:45 PM

To make discussions easier to comprehend it would be helpful to not use acronyms and abbreviations, which I see a lot in this forum.

This site is used by people from multiple countries and jurisdictions with different laws and medical practices. The reader can often have a difficult time understanding your questions or answers when acronyms are used that are not familiar to the reader. I often see writers start their question with "I have XXX" and I haven't a clue what XXX is. Yet it may be something I may have some knowledge about and may have some helpful insight to.

Even drug names can be different from region to region so if you know the drug name rather than the generic brand name, then that would be more helpful.

Jun 09, 2015 6:59 PM

Struggling, it seems like you have more of a problem with the people in the community rather than the organization of the community.

Jun 09, 2015 7:59 PM

Struggling if you are looking for specific information and can't find it please start a new topic with your questions in it

Jun 09, 2015 8:10 PM

Also if you don't know what someone means when they use an acronym just ask. Honestly it's a pain in the ass to type out something like rheumatoid arthritis every time so ra gets used instead. Also many of us have joint issues and typing is difficult so typing out the bigger unnecessary words every time is not feasible.

Jun 10, 2015 11:13 PM

Struggling, you stated you wanted to provide help to others through your own experiences. Yet you've offered none. You've blatantly criticized one young participants posts twice. Everyone else on here offers personal experiences, and regardless of our differences in personal or religious beliefs, no one but you has criticized and insulted another. Several of us have asked you to create posts so we can know what you're looking for but you don't. All you've done is criticize and complain about the closeness we've all developed.

I'm personally glad to receive virtual hugs and prayer offers. And I pray for others too. Prayer & religious beliefs are two coping mechanisms for many on here, myself included. I don't get out with friends nor do I have coworkers anymore. The people in this community are like family or old friends.

I'm sorry you haven't found what you're looking for but you're the only one to complain so far. We've offered to help you but you've ignored us and not posted any questions or topics, just criticism. I'm sure many here will agree that politeness goes a long way.

Jun 11, 2015 7:44 AM

I apologize if some of you have taken my suggestion personally. I believe you have lost what I have asked and that was to have two separate forums, one for Community Discussion and one for Questions/Answers. I may be the first to express frustration with this issue but I don't believe I am the only one, just the only one who has had the forwardness to express it.

This community forum was very useful tool for information when I first joined two years ago. I believe that was about the time it was first launched and had fewer users. People shared what worked for them and responses were direct and relevant to the question asked. The first few times I posted questions I received some useful help with probably a dozen or so responses to each question. The last time I posted a question, there was over 200 replies with very few that were relevant to the question asked. There was three users who ended up holding a conversation on the posting with probably 40 or 50 postings that discussed completely irrelevant items such as the weather, what they were doing that day, and many other personal items.

When you research a posting with hundreds of postings that contains few and far between responses that are relevant, causes me and I am sure others to stop reading and give up on that posting. And who knows maybe a useful response could have been buried in the hundreds of postings which is lost to some.

I am not saying don't have a forum that allows people to connect and have their personal discussions, what I had asked is that it be a separate forum so that people who want to have relevant answers to questions don't have to wade through endless postings that aren't relevant. Most sites that have forums do supply that kind of structure, for example, I am a car enthusiast and have membership to several sites that have forums. On those sites there are forums for General Discussion and a separate forums for Specific Issues.

On CatchMyPain, there could be a General Discussion forum and a separate forum for Question/Answers. There could be even sub forums to the Question/Answers that are specific to diseases or syndromes but that would likely take some research to determine how that would be structured. I have no idea how much structure change that would be for them to create the change on the webpage but I suspect it is relatively small.

Jun 17, 2015 2:43 PM

Well said, Flappsy!! I think that many of us have become close and are able communicate as such. I too feel comforted by virtual hugs and the offers of prayers to help me feel better. If a specific question is not asked and you've been asked to please be more specific about what you're looking for and you don't do that, I don't know how we can help. I'm sorry you feel the way you do, we all do our level best to help each other.

Jun 19, 2015 8:00 AM

First of all, many thanks to all of you for providing such valuable feedback. We really appreciate it!

I can tell you that we are currently working on the private messaging feature... :-)
There will also be a kind of profile where you can write something about yourself (mention your diagnoses or anything else you like).

We will also develop the following features at some point in time (hopefully in the next couple of months): editing of posts, posting pictures (what kind of pictures would you like to post?), posting and copying links.

Last but not least, I would like to address the discussion about groups. In particular, the issue about "too much chit chat", which Struggling pointed out. I really appreciate the forwardness that Struggling showed. It takes courage to bring up such a delicate topic and it shows me that we truly have a strong pain family because we are able to discuss such things. Arguing is part of being a family, I guess. I agree that we need to provide room for both needs:
- room for questions and answers where you can quickly find advice (no chit chat)
- room for sharing general thoughts and support which is equally important.
I know how it feels when your are home alone and suffering from pain. In such moments there's nothing more valuable than having a pain family. But then there's also times when I am just looking for some advice or facts.

We will think about a solution which will hopefully make everybody happy. Any suggestions are very welcome.

Please feel free to provide even more feedback.

Kind regards,
Daniel

Jun 19, 2015 9:42 AM

Daniel, I like the suggested changes you mentioned. I think chit chat just sometimes happens. It shows how close we really are, comfortable too.

A problem I have is when someone posted a link but I can't remember which post it was in to research the site. Is there a way the app can auto capture the links and post them to a category specifically for them, like home, entries, graphs, and community is set up? That way if we needed to find a link, rather than going back through all the posts to find it we just leave the community and go to say "Resources." πŸ™πŸŒΌ

Jun 19, 2015 9:01 PM

One thing I think would be cool is if you could view the original post if a forum. There are some parts that have hundreds of replies, and I can't get to the top message without it bumping me back to the most recent message. It would be cool if you could scroll, but also see the original message hovering at the top. I wish I could draw a diagram of it because I don't think I'm Spain it this very well.

Jun 20, 2015 5:08 AM

You're spaining it wonderfully. I quite agree.

Oct 06, 2015 8:21 AM

I agree with ferretbandit.

Oct 06, 2015 9:05 AM

It would be great if you could get the iOS version up to date so that I can use the direct messaging.

Oct 06, 2015 9:33 PM

I would like to see categories that would be great. Like medicine questions, categories by pain conditions, maybe a therapy category and a book/hobby cstegory

Oct 06, 2015 9:59 PM

I think the categories would be awesome.

And being able to edit posts and after hitting the heart button, being able to un-heart it. sometimes when I'm scrolling through my finger will grade that button and wham! I have hearted something that is a painful experience for someone and i look like a heartless person.

I appreciate the warmth and the hugs that are given to one another. This is a support group and often i find that the support groups that get really large and don't have much moderation become a place for people to bring their anger and take it out on others.


@Struggling I don't mean you. You've started your opinion on a respectful way. One suggestion for those acronyms is "urbandictionary.com" I should know the acronyms but i don't. It's something i refer to often bc I understand how difficult is to type in full sentences sometimes and I know I've been sheltered from the Internet days. But just for the record i think 'xxx' means a bunch of hugs. Also, I know it can be frustrating to ease through messages when people start conversing in a post that is labeled something else. But it shows that we are close knit community. I hope that some of the improvements will help you to enjoy and utilize the site

@Daniel (CatchMyPain)
I think it would be awesome to have separate categories for discussion, "just for fun", advice, maybe even a place where we go to vent. That way when people sign on they know what they're getting into. Often i hold back bc i don't want to be a Debbie downer. I am really grateful that you've designed this community and o hope that it stays as supportive and infused with warmth and friendly, family like atmosphere.

As to separating the diagnoses, I would think it would become a very long list of conditions that could become overwhelming. On the other hand, it may also help those of us to connect with people who are going through similar trials with certain diseases. I really love this site because the other support groups I've been a part of become a stressful situation where it seems that people are more ugly and at some points actually become flame wars and less supportive and much more destructive. So so so so glad to find this community where that has not happened. And i pray that with our good group and good moderators we can help each other and continue to lift one another up.

Thank you for giving us a chance to give our input on this support website. What we have here is a gem πŸ’Ž , filled with good hearted people, and here's to hoping we can continue down this road. :) πŸ’–πŸ˜Š

Oct 06, 2015 11:56 PM

I wish we could have 2 different "bodies" with 2 different sets of colors. I have "numbness" and "pain"so it is hard to do that part of the app for me. If we had blues/greens to assign to our discriptive phrases that would make my day! And if the numbers were put on the range strip my doc would love that too.

Oct 07, 2015 12:33 AM

I find that the forum is fine. We all get together for information and support. My aha moment was reading some of the post and finding information about some natural pain relievers. These moments would not happen if we were funneled

Oct 07, 2015 3:18 AM

@Daniel, for pictures, maybe something like this:

1. In some of the comment sections of blogs I read, if there is a particularly depressing or disturbing article, someone will post a picture of cute animals as a sort of palate cleanser/mood booster.

2. There are a number of webcomics that describe the daily life of ppl with chronic pain, depression and anxiety. Being able to post a pic of a relevant webcomic would be nice.

3. Also, being able to use a picture as a link. Like, click on the image of the webcomic to bring you to the website.

4. There are many images of quotations/sayings/poems on lovely backgrounds.

There are many ways images could be utilized to enhance our experiences on the app 😊.

Oct 07, 2015 3:36 AM

Maybe instead of categories we could have tags associated with posts.

So let's say I wrote a post about what happened to me today. (For the purposes of this post I will use " " to identify the words I would check off or add at the end of my post to use as organizational or search tags):

I saw my "pain mngt doctor" today. We discussed my "anxiety medications" as well as my "pain medications" because my "PCP" cruelly and "wtf" just refused to refill them.

Am I making sense? Lol, it's like 3 am here and it makes sense in my head so I hope it makes sense to everyone else.

Oct 07, 2015 3:48 AM

And here is an example of a time I wish I could edit my first post lol.

I just wanted to point out that some kind of organizational system like tags or categories or the like would be nice in my case simply because I have quite a few chronic pain issues but I do not have Fibro (or at least I don't think so) and so many of the posts are specific to that that it does become daunting.

I remember specifically searching for a post that mentioned neuropathic foot pain for my stepfather (who has it due to chemo) but I never found it. I gave up looking thru the search results.

Oct 07, 2015 11:26 AM

Drawings are not updating when we post to new questions. I have not reported it because I really do not care that much, but others are reporting it now so I guess it might be a little glitch?

Oct 07, 2015 11:26 AM

Drawings are not updating when we post to new questions. I have not reported it because I really do not care that much, but others are reporting it now so I guess it might be a little glitch?

Oct 07, 2015 4:24 PM

I am new but a couple thoughts.
It does seem a bit confusing to have it all smashed up under community. I think having a few big topic ideas or areas would help.
Also I shouldn't have to scroll all the way to the end of everyone else's post to add my own. Maybe have a reply to this post at the top.
Also I see sometimes some one will say something in a reply and I would like to add my two cents to it or ask a question to that specific replyer, if we could reply to that sub post like I have seen on other forums and comments pages that would be nice.
Mabe have a Facebook like wall where we can post to select people in our group?

Oct 08, 2015 10:00 AM

Daniel, my drawings aren't updating, for the past week. I use to be able to "copy forward" any drawing, and then change any necessary colorations. My doc thinks these are good ways to document how my pain changed day to day, or within the same day. Thanks! πŸ™πŸŒΌ

Oct 08, 2015 2:33 PM

I am really new to this group. It's very different to any other group I have belonged to. I like the openness and the empathy shown by this community. I am not worried about posting exactly how I feel and know IIa. Not being judged. I am happy to receive hugs and even more happy that people are willing to pray for each other. There will always be folk offended by offers of prayer but I am not one of them. I will be interested to see how this community embraces any new changes. No community will ever please all of the people all of the time. Thank you for all the hard work that must go into running this group.

Oct 08, 2015 3:32 PM

Perhaps it might be good to have a flag Uk/USA etc next to our user names to quickly identify where a person is from to make understanding some comments easier?

Oct 08, 2015 7:43 PM

That could be a great idea. Although, I can usually tell if one of our pain gang is from here in The states or from across ther pond.

Oct 10, 2015 9:51 AM

(I just posted this in another thread, but it is even more relevant to this thread.)

Ok, my thought was to perhaps extend the Catch My Pain community into the social media sphere somehow.

I don't know if the ppl behind Catch My Pain ever considered utilizing any of the things myself and others have mentioned, but all of them could be used to introduce more ppl to this app, both ppl who are in need of it because of dealing with pain and ppl who are in need of it because someone they care about is in pain.

Detouring for a moment:

1. Something that would be useful to many is a place to list resources - both for ppl who r in pain and for ppl who need help understanding it. There could be links to things like SSDI, Medication Resources, Pain Clinics/Doctors, Medical Marijuana, Articles/blogs/studies, Clinical Trials, Therapists, etc.

2. Metrics & statistics & charts! Right now all we have to look at is our own pain info. What if all of our info could be pulled (anonymously of course) to show things like:
-There are this many ppl signed up for Catch My Pain.
-Out of those, whatever % has (let's use) Fibromyalgia.
-Of the % that has Fibro, this many % concurrently has IBS, or CFS, or Lupus.
-We could then look at other crossover info from the app like stress, the weather, time of day, medications, maybe add food as well.

3. Doctor/Specialist/Nurse/Psychologist/Physical Therapist etc AMA
An AMA is "Ask Me Anything". Reddit has them a lot, but ours would be more specific. We would find Practitioners who are willing to talk to the community and answer any questions we or our family had. AMA's can be quite informative.

Number 2 could be done within the catch my pain app itself, while the other two could capitalize on social media. Number 1 would work on a blog, Facebook, or the Community feature in this app if it is tweaked a bit. Number 3 could also be on a blog, Facebook, or Community feature.

I'm personally a fan of Pinterest. I love looking for interesting things and easily posting them to my page. Perhaps we could have an Official Catch My Pain Pinterest page that we could link to. Whoever ran it could post both informative tidbits, humorous and wise quotes, & adorable animals (unless we leave it open to user submissions).

I just think this community is wonderful and growing rapidly and the app keeps getting better as well but definitely could use outside of the box suggestions.

Whatcha all think? Any ideas or comments?

Oct 10, 2015 2:03 PM

I kind of feel protected here from the rest of social media but that's probably not typical and due to my circumstances. I might have been too intimidated to post if I thought it was going to many large social media venues --but I know we need visibility and support like Amie is talking about, and once anything is posted anywhere what happens with the content is out of my control. I find Facebook too triggering right now but maybe someday. Certainly would be great a great communityπŸ’•

Oct 10, 2015 2:14 PM

Oh Marsemouse! I'm so sorry that I accidentally implied that we should share our posts in the community section with any social media product! That is not what I meant at all! I only meant that we could utilize social media as a supplement if we wanted to. No way no how would I want anything anyone posts in the community section to be broadcast across any social media outlet. And of course, no one would be forced to use social media if they didn't want to; I wouldn't expect the Catch My Pain app to change, except maybe to have a section that allows users to view any Catch My Pain social media projects or simply to have links to them.

Oct 10, 2015 2:44 PM

You worded it fine AmieπŸ’• thank you for your sensitivity to my extreme oversensitivity--It is a great idea and a community I would greatly welcome. I just need a change of brain sceneryπŸ™. I'll re-re-iterate our iPhoner's requests for the private message function while I'm here though ☺️

Oct 10, 2015 3:13 PM

I am weird I know but I kinda like things as they are. I belong to a Fibro fb page where I find info as well and can also post questions. I find solace in replies that make me realise I'm not imagining certain symptoms. Just my 2 cents worth. Thanks for this app and the admin involved.

Oct 10, 2015 4:04 PM

There's a private message capability? Lol where? . How?

Oct 10, 2015 4:18 PM

I think it would be great to have a PM capability like fb messenger or similar. Not all of us have iPhone though πŸ˜‰

Oct 10, 2015 5:29 PM

I have an iPhone as well and am trying to wait patiently for the IOS companion to arrive so I can also send private messages to my peeps that I consider my friendsπŸ’•

Oct 10, 2015 6:46 PM

I have android and don't know how to send private messages to those i consider friends either.

Oct 10, 2015 6:49 PM

Kitty, you need to have "pain companion" for droid if you want to PM. Can't pm on the CMP site at the moment!

Oct 10, 2015 6:53 PM

A ha! Thanks, Amanda! (that's why i asked for your email. But I so didn't know about the PM.) I hope you have a droid! Thanks. I'll see if I can find it!

Oct 10, 2015 7:21 PM

Grace iPhones don't have the function yet--updated for android here already.

Oct 10, 2015 7:22 PM

Not the function, the app that goes with it that Amanda wrote about.

Oct 10, 2015 7:23 PM

I officially give up talking until I don't again.

Oct 10, 2015 10:38 PM

Marsemouse, don't feel alone. After being hacked via FB, I'm leary of online sites too. πŸ™πŸŒΌ

Oct 10, 2015 10:59 PM

Marsemouse, Flappys
I feel similarly about the online social media sites. Nothing is private. But i guess it is our new world. But what I'm most worried about is opening myself up to others and meeting betrayed as i have again & again.
But i trust y'all. So don't take it that I'm talking about y'all. ;)

Oct 10, 2015 11:40 PM

Is it the one ap that is catch my pain for fibro patients?

Of course. If it is, I can't remember my password! It's written down maybe? Ha but where that is the question.... Hmmm

Oct 10, 2015 11:48 PM

When I first started I didn't notice any guidance so I wrote about my issue and then the next day I wrote again about update all on new topics I didn't think about looking my initial post up to add to it therefore making extra posts. Maybe some kind of "my posts" option and please forgive me if there already is one and I just missed it lol

Oct 10, 2015 11:52 PM

OK so I worded that wrong I'm meaning someway to keep our posts on top of other people posts for us to add new posts. Maybe just ignore me. I can't say what I'm thinking. O my

Oct 11, 2015 8:56 AM

Achy, in the CMP app there is a tab above the posts for your own, I believe it has a head silhouette. The looking glass tab is to search for a specific topic or person. Topics are filled by the most recent date accessed.

However, in the Pain Companion app (PC) I don't see multi tabs, although there is a looking glass at the bottom. πŸ™πŸŒΌ

Oct 11, 2015 8:58 AM

PS: I newsstand what you're trying to say. I wish I had done that too for some of my entries.

Oct 11, 2015 5:43 PM

Kitty, I have an iPhone and the iOS version of the companion had not been completed as of yet. I wish it was because there are several of you here that I would love to chat with in a more direct way sometimes.

Oct 11, 2015 5:46 PM

I would love to chat with you! Do you have Skype? It has a chat function. But i know going through all that is a little harrowing to share that info on another venue. But if you want to email me and this goes for everyone who knows me and any of y'all who want to make a connection. kungfukittay@gmail.com
Please hit me up :)

Oct 11, 2015 5:55 PM

You got it, Kitty!!! I'd love to e-mail you. Then you'll have all my info and we can chat at random. Thanks for sending that for me. I think it's great!! πŸ˜ŠπŸ’•

Oct 12, 2015 1:50 AM

Super duper! πŸ’–πŸ’ž πŸ’•looking forward to it.... Now r if i can only remember my password! Hehehe talk to you soon! To all of y'all who wanna talk too. :) πŸ˜† πŸ’—this heart is smiling from ventricle to ventricle

Oct 12, 2015 2:05 AM

Omg your email addy is awesome Kitty26! Kung Fu Kittay - wish I had thought of something that clever πŸ˜‹.

Oct 12, 2015 2:08 AM

Thanls, Amie. Its been a handle of mine for twelve years lol

Oct 12, 2015 2:10 AM

I will explain the background someday :) is short and sweet but got a headache coming lol 😁 I don't know why i decided a laughing emoticon was appropriate for a headache. Maybe it goes to show how out of it i am Hehehe.
Ms Kitty out ;)

Oct 12, 2015 12:56 PM

What would be good is to be able to delete our own topic that we created. Or being able to delete our comments.

Oct 12, 2015 2:10 PM

Delete and be able to email or own posts to ourselves (without including others comments). πŸ™πŸŒΌ

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