Cpnhelp.org - Chlamydia Pneumoniae Treatment

 Mac- I agree. Our site is both visually and functionally confusing for anyone coming new to it. I've had a couple ideas too. I'd love to hear comments on this. 

• Rants and complaints about treatment, etc please blog. Save real questions for forum topics.
• I'd like to reset the default blocks (those boxes in the sidebars) so that
  
• the left sidebar only shows the links, the Support  Cpnhelp, and the Syndicate button;
  
• The right sidebar only the Site News block. 
• Members could choose to show any blocks they want by using their account edit page. That way there is less visual clutter confusing the issue on the front end.
• Similarly, the top tabs could be narrowed down.
  
• I think the Physicians page is probably outdated at this point and could be made into a Handbook appendix to get it off the top tabs.
  
• Likewise the Image Gallery and Surveys could be added to the left sidebar links so that the main orienting tabs are simplified.
  
• The Getting Started should be moved before the Handbook tab.
• There is no one maintaining the Research Pages, which I want to move into a book format anyway, it's easier to maintain that way. I don't know whether to leave this as a top tab or, with someone maintaining it, make this tab linking to a page that has all the "books" listed, including Sarah's supplementsi booklet, research book pages, the Handbook and so on.
• There is also no one maintaining the glossary or taxonomy categories. The glossary is what makes that little superscript with the definition of words popping up when you mouseover it. It's not at all up to date. The taxonomy categories help in organizing and searching, at least I think they do, and are also not up to date. These need a dedicated volunteer who has a bit of the science and some writing skills to do it right. Glossary upkeep would really help the new folks.

 I need your fresh eyes everyone. What are people saying about what's confusing? Most sites are pretty much forums with a few "sticky on top of lists" info posts and the rest is comments and discussions. We have a lot of info to present here, and we have the blog feature which adds another layer to the usual forum posts. We can arrange these things to show any way we want! 

We could have a front page (home page) with blocks in the main text area that take people to different areas (I'll come up with an example from another site to show you). You could post links to different pages you've seen that might help us.

CAPi for Cpn 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 300mg Roxithromycin, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3

I completely agree. I didn't really want to say too much as I'm relatively new and no matter what I think, you guys have been fine tuning for some considerable time, but what the Lyme guys were saying is what I felt when I first arrived.

I'm a professional web developer and because of that I try very hard not to poke my oar in on other people's sites. My areas of specialism are Accessibility and Usability and I have done site reviews when asked. If you would like a review I would be happy to do one (don't panic Jim, free of charge). Speedbird (Carol) works in the same field so she would be just as qualified. Failing that, I could also ask a totally disinterested 3rd party to take a look.  

Berkshire, UK. Diagnosed RRMS Feb 4th 2008.

NACi 2400mg. All supplementsi. Doxyi 200mg. Zithi 250mg M/W/F.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008.

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Berkshire, UK. Diagnosed RRMS Feb 4th 2008.

NACi 2400mg. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008. First pulse June 2008

 Absolutely open to site review by someone with expertise! Please, please!

"Fine tuning" is not what we've been up to, except during the first year of the site. We've been mostly adding-- and you know how that goes in websites whose upkeep is ad hoc!

Since we are going to get the drupal system upgraded, I could add usability changes to that. We have the money to cover some additional changes.  

CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 300mg Roxithromycin, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3

change is good.

Having said that, if this site was handed to me, like an olive branch; I would stop of nothing to get to the bottom of the opportunity to be well.

That is precisely what I did when I arrived here.  I was frustrated due to the fog more than anything, but I persevered.  Now I know our site pretty well, except, I still don't know how to put more than one pic in a post & how to have it not look like a thumbnail. 

When I travel to other sites, I still get that  kind of confusion, because I am not familiar with the new site.

Let's face it, we are packing in a lot of information here.

CFIDSi/ME 26yrs, FMSi, IBSi, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#9 750mg 5.5 day, 4-25-8

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CFIDSi/ME 32 yrs, FMSi, IBSi, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#11 1000 mg 5 days 6-14-08

We might consider having a frontpage and getting the discussion topic a page of it's own.  That way it would look quite a bit less confusing.  Yes, my Lyme friends have found the site overwhelming.  So the less that is on the first page the better.  I still like the tabs but with all the rolling texts from the topics they can be easily missed and they are oh so important.

It is quite difficult to actually train people regarding posting catigories etc.  Many are foggled to start with and I have participated in sites that had lots of post rules and moderators and we don't want to get into that, at least I don't want to do it!  

It is really hard to put brakes on people and train them, people are as they are. 

I have finally realized that I just cannot read everything and things I want to follow I make a comment so that it shows up in my recent posts.  This is working for me at this time.

Louise

CFSi/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi, Roxi, Full Tinii Pulses. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

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LouiseUSA. CFSi.WheldonCAP6/24/07. IntermittentCholestyramine 1-2 packets at HS with pulses &periodically as needed for porphoria&endotoxini. VitD-3,4000IU.Magnascent Iodine 8gtts/1-2x/day.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

I think that one of the things I have found most difficult to cope with recently are the discussions that have very little to do with Cpni and the CAPi. Questions regarding comparisions with other protocolsi, or treatment of other diseasesi is time consuming for people such as I who are not high flyers in science. And therefore I tend to ignore people asking those kinds of questions, or reply with platitudes which are less than supportive or welcoming.

I don't think that moderators would help us, I don't think the problems lies here. I think it may be helpful to have categories of blogs, giving them more prominence on the page: lets say a radio button for ABXi/CAP blogs, help me blogs, supplementsi blogs- so that it would be easier for some people to make a choice about which to answer. For example I would choose to answer help me blogs and supplement blogs as a mattery of priority, but might leave the discussions about abxi and caps to other more qualified people.

And if we make some changes to how the site operate, is there some way in which the welcome message can be sent out automatically to new members? 

Michèle (UK) GFAi: Wheldon CAP 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMS, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMS, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

 There may be ways to have the 'recent posts' page group posts by type (blog, forum) and we can could add categories (treatment update, help question, supplementsi) that folks have to choose when they post to further break it down. This probably would take some custom coding but we can manage that. The look to the forums/blogs listing could be made to match the more traditional forums so that it's more familiar to people, there are modules to do this.

For the site theme, especially for the front page, we might look at a theme that organizes things in page blocks rather than strick three columns. This gives the option to put blocks on the page that group things for the reader so they can see what's on the site more clearly.

http://drupal.org/node/204943 is an example.

Another if you go to http://demo.roopletheme.com/ and look at Litejazz and Newsflash from the pull down menu. 

CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 300mg Roxithromycin, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3

 I'm with you on this analysis, Andesine. The only problem I can forsee is grouping the blogs by catergory. It's the legacy problem, as none of them have been categorized this way (via taxonomy in drupal) previously, so to start with such categories would leave out all the previous (uncategorized) blogs. Someone would have to tag these by hand. Can't imagine who would do the job. Still, it's a good idea...

CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 300mg Roxithromycin, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3

 Up to Michele- it's her baby!

CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 300mg Roxithromycin, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3

I don't mind what you call it so long as it has a tab of its own, and does not get cluttered with high flying science stuff. (<But then I'm not a type A personality like Mac is and don't feel like being imperative.>)

It may be time to divide the site up.   We did discuss this earlier but thought it would be divisive, but now that we are getting so unweildy it may be the only way forward.   Certainly a thread such as this would best be in a different place to treatment and diseasesi... as it only concerns a few of us. 

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMS, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMS, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Louise, I think I outlined what I thought on my post further above my last post.   I'm not an expert here and don't know what is possible... In terms of organisation it would make sense to have different categories of blog space.... 

I'm not sure that updating blogs is the best way forward for most people.   It works as a personal record, but not as a place to get help and discuss things....

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMS, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMS, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

(< Yeah! Mac I know what you meant!>) I was only joking....  I really don't mind what we call it.... I REALLY MEAN THAT. (<SHOUTING NOW>)   So long as it means this is the place to get a quick and easy overview of what this site is all about, it has its own tab, is seperate from the handbook and does not get cluttered with stuff that might confuse....  

The module  may well be too simplistic for some people... They can go on to do more studying in the handbook... but for lots of people it should be the 'place to start'.   Maybe we can get a concensus about what to name it, and then get Jim to change the TAB when we have decided.   I don't know how to do that....

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMS, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMS, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

 I'm resistant to the notion of splitting posts up into diseasesi. The whole point to Cpnhelp is that it has allowed us to see the commonalities and differences amongst Cpn related diseases. We've learned a lot from that which we never would have if we'd stayed in disease-segregated communities.

There are clearly MSi questions that I scan and I don't poke my nose into because I'm not knowledgeable about them. But issues like porphyria, which was not a big problem for the early adopters with MS such as Sarah and Mac, but has been quite an issue for a number of MS folks (Artile for example), would not have gotten identified as early without the CFSi and Rosaceai folks identifying the symptoms so quickly. Secondary porphyriai is one of those things that's linked more to overall bacterial loadi and target organs infected than to disease state, although a number of the MS folks appear to have a more focal infection and less overall bacterial load.

My concern with disease-segregation is that people won't scan widely enough for patterns and may not recognize them within their group if their mindset is "Our group doesn't have that Cpn problem...". I know it seems that it would be clearer for new folks to have forums "MS questions" "CFS questions" and so on, but is "I'm nauseaus and in pain" an MS question because the person asking it has MS? And will all the answers to it be read only by MS? Is "I'm having loss of sensation and muscle weakness" a CFS question because the person asking it has CFS?" Frankly, most of us with CFS would not be knowledgeable enough to respond to that one. Do we then refer them to post their question on the MS side of the site? 

Now blogs might be more usefully categorized into diseases. But what about multiple diseases? There are people with MS who "qualify," pardon the term, for Fibro and CFS diagnosis. There are folks who have Fibro and neuroi symptoms.

Little boxes... 

CAPi for Cpn 11/04. Dx: 25yrs CFS & FMSi. Protocol: 200mg Doxyi, 300mg Roxithromycin, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3

START HERE! Has my vote because I know I would have welcomed such an option when I first landed here. My view is that it should come directly after the "Home" link and before the Handbook.

Blogs - we should maybe call them Journals to discourage commenting on them? Then if anything arises in the blog/journal where help is needed then a link to the relevant blog/journal can be given in a forum question to save repitition. This would also free the flow of the treatment record from interruption.

About categories: I had thought that disease classification would apply to blogs only. It's important to realise that categories applied are not mutually exclusive. You already have the facility with the glossary of adding more than one category to a blog post (if that really works for everyone?). So in theory this should work with Search to bring everything together in the results. This approach of course depends on the searcher doing the work neccessary when framing the question - like all search engines. Unless you have a back-of-the-book style index, which is a massive project, then there is no escape from users having to work pretty hard for answers. (Maybe we should look more to the Search facility and refine it?) Which is why questions get repeated - behaviour not confined to the foggled users of this site, as this report shows.

GOOGLE GENERATION
A new report from the Joint Information Systems Committee (JISC), commissioned in part by the British Library, counters the common assumption that the 'Google Generation' - young people born or brought up in the Internet age - is the most adept at using the Web.

The report ‘Information Behaviour of the Researcher of the Future’ also shows that research-behaviour traits that are commonly associated with younger users – impatience in search and navigation, and zero tolerance for any delay in satisfying their information needs – are now the norm for all age-groups, from younger pupils and undergraduates through to professors.

http://tinyurl.com/2ouzxl

When I first came here I was naturally more interested in the application of this CAP to MS so I looked first at the Patient Stories to find examples. As I became more familiar with the site and began my treatment I appreciated the mix of posts where despite the primary illness some tips on managing the fall-out from treatment helped enormously eg. Elinor's post about the Chi machine. So I can see the benefit of having a forum section devoted to treatment help, tips and questions. I am not so sure about segregation within the forum by primary illness since the origin of that tip came within a thread by Daisy on Lymph treatment for her husband, who is the one and only with Balo's here to my knowledge.

As far as the donation information is concerned then given the aspersions cast elsewhere about our money-making aim, the notice should stand as it is and on the landing page.

We also have to take note that not all our visitors are ill, we must also make it easy for physicians to get to their information. So an obvious signpost for them is essential on the landing page too.

Whilst I agree that we can streamline the look of what we have now we also have to take account of the purpose of this site which is not like many other forum communities. We also need to be taken seriously by mainsteam medics and should not lose sight of that.

New Forest, UK. Progressive MSi dx 12/06 LDN 3/07 CAP 6/07: Wheldon version. Pulses so far #9

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Progressive MSi 2006. LDN & CAPi: Wheldon version. Pulses #11. I can because I think I can.