Despite Our Losses, People with ME/CFS Want More
We've been cheated by ME/CFS and we all know it. That's a no-brainer, if you'll pardon the cognitive pun. And loss didn't just result from the bad things that befell us. It also encompasses the good things that just ... never came. The absence of bounty. Of wholeness. Of peace.
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Preliminary Web Templates are Here!

Discussion in 'Create A 'PatientsLikeUs' ME/CFS Treatment Program' started by Cort, Aug 12, 2010.

  1. Cort

    Cort Phoenix Rising Founder

    1.0 Patient Profi&#.jpg 5.1 Summary Of Tr&#10.jpg 10.0 Specific Lab &.jpg 8.0 Specific Symp&#1.jpg 6.0 Specific Trea&#11.jpg 7.0 Community Sym&.jpg 9.0 Community Lab&#3.jpg 5.0 Total Treatme&#1.jpg

    Jade created these preliminary templates for the website. In order to see them in all their glory you have to fi click on them twice and then use the zoom mechanism (with the +) to zoom in on them. Please let us know what you think.

    Some more templates are being created and discussed using a program called Creately. If you'd like to join in on that just PM me. Thanks.
  2. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    Hi.. I noticed CMV is missing from the Pathogen tests (CMV is closely related to EBV and is of the herpes family too).. I believe this has been implicated in CFS/ME. Also lyme (i've read that 10% of those with lyme end up developing CFS),

    Toxoplasmosis is something else that once you have.. sits there in your brain. (thou im not sure if Toxo is implicated in CFS)
  3. Stone

    Stone Senior Member

    Can you expand a little on what these are and what they should mean to us as PR users? I don't have any background or frame of reference for understanding what these are for. Can you help me out a bit? Is it a proposed or future change for the website? Just need a clue. Thanks :)
  4. Cort

    Cort Phoenix Rising Founder

    This for a treatment review project for the website that is separate from the Forums but will have some links to them. The templates are preliminary. We'll have some more up soon. They're just models at this point. You can find out more in the other threads in this forum. Thanks.
  5. shannah

    shannah Senior Member

    Cort - Templates looking good.

    I have one comment regarding allowing for treatments that can commonly backfire and make one worse. For instance, in the examples posted, (the 4th set of templates) under 5 HTP, can actually backfire and make some worse.
  6. Cort

    Cort Phoenix Rising Founder

    Thanks Shannah - a common problem. We will have a side effects section where you can list side effects and why you stopped using a treatment. When you rate the treatment you can also click - made me 'a bit worse', much worse or much, much worse - something to that effect. thanks for the question.
  7. Cort

    Cort Phoenix Rising Founder

    Thanks Tania - these are just preliminary shots. I promise you CMV will be in there.
  8. leela

    leela Slow But Hopeful

    Couchland, USA

    This is *such* a cool project, and the templates are beautiful!
    The project seems staggering to me, and yet you've forged ahead and created this amazing resource, not to mention the myriad other helpful and interesting things you create, post, and oversee. A hearty and heartfelt thank-you from this direction, with the hope that someday I, and a whole army of us denizens of Couchland, will have the creative/mental energy back to be of some assistance to endeavors such as these.
  9. Cort

    Cort Phoenix Rising Founder

    Think how energy we could unleash if we could just raise the energy level of everybody by about 30%! Of course, this program could increase peoples energy levels by directing them to treatments that work for them. I hope we can get you actively engaged in the project when your energy picks up. :)

  10. energyoverload

    energyoverload Senior Member


    Those mock-ups look great. This site would be such an informative resource for so many. Also if you need any help with the graphic design. I am able to do quite a lot of design work in Adobe Photoshop/Illustrator, perhaps if you need a mockup of the site layout etc, I am very happy to do it in terms of graphics. I'm just useless at the technical coding side...

    If this would be in any way useful, I'm very happy to help.

    Thanks for all your work so far on this great innovative project,

  11. BEG

    BEG Senior Member

    Southeast US
    Cort, I've looked at these templates but can't remember. Will there be a question on whether a patient has had a cancer diagnosis while sick with CFS? The low-level radiation treatment thread has got me thinking that cancer radiation treatment could have a long-lasting and profound effect on a person with CFS.
  12. Cort

    Cort Phoenix Rising Founder

    Absolutely it will; in fact an subset of post-cancer patients, that is, people who have been cured, come down with a very CFS-like condition; why - no one knows but one study is looking at mitochondrial problems, believe it or not.
  13. rydra_wong

    rydra_wong Guest

    Rich, I think this is a great and sorely needed idea - especially after seeing how people keep introducung threads to the effect "Has anyone seen anyone with xxx recover?" and then seeing how the thread scrolls away into oblivion.

    A few comments though...I think - it's maybe just me, because no one selse has commented thusly - but aren't some of your questions rather personal and not pertinent? What difference does level of ediucation and financial status have to any disease? Well, I guess you have more options with money, but let's put it this way -- I never respond to any questionaire which asks these types of questions as I consider that sort of thing no one else's business and I was in fact raised by my parents to strictly leave forms that ask those types of questions alone. You may not get as much participation as you'd like if you ask these types of questions, for there will be at least some people who will just stop righ there and not read further.

    Another point is that in this economy don't you think it is more informative to make your question regarding work say "able to work full time; able to work part time; unable to work" or something like that?

    I didn't look carefully at all your tests so forgive me if I missed it, but some doctors who treat CFS patients claim that the ESR test is important in diagnosis. Did you include that one?

    I think maybe for what you are trying to do you probably have to limit this to CFS/ME, but I should point out that that will limit participation from people who genetically are vulnerable to this disease and have avoided it from being able to participate for whatever light they (such as me) could shed. It will also limit people like Freddd from participating, who also beat serious issues in this cycle. (He beat them entirely, I have only just managed to stay afloat myself). I believe CFS runs in my family but everyone with this problem was diagnosed with diabetes and their doctors blamed every last thing on that.

    Do you have a screen for entering genetics?
    Do you have a screen for analyzing diet and lifestle issues? In particular, if I personally were to use such a database, I would want to see not only the supplementation regime of anyone whom I was considering following, but also something about their diet -- foods they commonly eat that they feel are important (such as sulfur containing foods, foods containing probiotics like yogurt, foods that some have ascribed particular value to like apple cider vinegar (acetic acid turns into hormones and is the poor man's treatment for high blood pressure), kombucha, perhaps others), what level of junk food they consume, what level of salt, how many servings of fruits and vegetables they eat everyday, whether they eat only organic, what level of chemicals - either from junk foods and pre-preprepaired foods or from environmental toxins - like use of air fresheners, perfumes, fabric softeners, lawn chemicals, pesticides, insecticides, cleaning products, etc. To include a complete list of foods and supplements taken on a typical week day and a typical weekend day. I think many of these things can have almost as great an impact as a supplementation regime.

    Great project! I can see it will be of tremendous benefit. I hope it is progressing well.

    Rydra Wong
  14. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    Ryda .. I guess the money thing will show that many of us are financially compromised and disadvantaged due to this illness and even if working part time.. often unable to work high paid jobs eg doctors, lawyers etc.

    There have been many money myths out there as far as this illness goes too. eg "yuppie flu". Maybe data base can help smash stupid myths like that.
    ArgyrosfeniX likes this.
  15. ArgyrosfeniX


    River Falls, WI - USA
    Interesting thought came to me as I was looking at Cort's mock-ups...

    Would there be a method to categorize, or make generalized subsets of symptoms?
    Maybe a list of symptoms where they could rank the level they are subjected to and
    then see if any patterns emerge? We could then cross analyze that to see if any treatment
    options work well for specific patterns (not that I'm suggesting PR plays doctor). This might
    allow those that feel their pattern matches to suggest treatment options to their doctors.

    Just a thought. ;)
    Leopardtail likes this.
  16. Leopardtail

    Leopardtail Senior Member

    You made some interesting points. I would also prefer demographic data be 'health relevant' such as age/gender rather than employment related. One obvious point though, employment status is a good indicator of health, educational status less so.

    Bearing in mind most people with ME cannot complete masses of data that food / chemicals stuff may be more useful as a second stage to avoid excessive workload & focus creep.

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