Mast Cell Activation Syndrome Websites and Books

MCAS resources

  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Lolinda, Lissa and Who Me? like this.
  2. Who Me?

    Who Me? Well-Known Member

    @Cort. I think @Remy brought this up but what about a mast cell and histamine sub forum? There seems to be a lot of interest lately.

    Also YouTube videos by Dr theoharides.
     
    Lolinda likes this.
  3. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    We can do that...just need to do it and move threads over there.
     
  4. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Where would it be - in research or treatment or ?
     
  5. Who Me?

    Who Me? Well-Known Member

    I think treament. I have something I just found that I want to post. I'll wait if you're going to do it.
     
  6. Lolinda

    Lolinda Member

    I am glad to see that meanwhile, there is a "mast cell" section both under research as well as under treatment!

    But is a comment welcome on the structure?
    I write it in good intention, hoping to be helpful.
    I find that the whole navigation structure is based on technical & systematic aspects. It would be better if it would reflect people's desires.
    Let me tell my observation as a story. When I first found HR, I opened the navigation and found: ME/CFS, Fibromyalgia, Forums, Resources, Videos. ➞ HR is unfortunately not for me. I have POTS, etc. Months later, I found some interesting things via search. I was inspired by Cort's enthusiastic style of writing :). Hence saved the link. Today, I searched MCAS and found this discussion ➞ I knew there must be something "mast cell" and I have to look under some "research" and some "treatment". ➞ I found it all.
    A process of a year or more!
    Now, when one is familiar with a website, structure does not matter much. Navigation structure is mostly for the newbie. A newbie comes with some desires, and these desires connect to terms. In my case it was POTS and MCAS. Other people will come with other terms. But in the very beginning, most likely all will come with disease names or with symptom names to start with. It does not matter much for a newbie if something is a "resource" or a "forum". Also, it doesnt matter that much if something is treatment or research (in fact, I hope there is a big overlap: scientific treatment! :) ) But ... unfortunately, these are the choices one is confronted with in the navigation of HR! Dont tell me anyone that a newbie would straight find this path:
    HR ➞ Forum ➞ Treatment ➞ Mast cell
    In each step there are say some 6 choices ≈ 6*6*6 choices in total = 216 = a lot :)
    However, the newbie would easily find:
    HR ➞ <my main desire> ➞ ...

    In sum, my point is:
    The newbie thinks: "I wana read stuff about my problem, please" :)

    (in German, there is a joke web design term "DAU" = "dümmster anzunehmender User" = dumbest assumable user. So, I was a DAU. Maybe you are a DAU, too, sometimes? :) )
     
    Last edited: Apr 30, 2017
    Remy likes this.
  7. Remy

    Remy Administrator

    It's a point well taken. I agree there is a lot of complexity to the forum list. Working on simplifying it is a worthwhile goal in my opinion. Thanks for the feedback!
     
    Lolinda likes this.
  8. Lolinda

    Lolinda Member

    Thanks for receiving my comments so nicely. I was hesitant of posting sthg critical. - I am new here and criticising things is not usually what I like to do when being new, as more often than not, things have reasons not obvious to a newbie... :)

    If my help is welcome, we could think together about a navigation structure that helps people. For the moment, I still have the view of a newbie to HR, which is imo useful for this. I have some experience to bring in as I worked in web design for a year, though, my job was that of the manager and not designer or SW dev. My main learning was that the best way to find a good navigation for a website is not to have a very smart biggg idea, but to ask users to describe recent use cases they actually had in real life. Give them access to the contents via their own terms (without actually changing technical structure much).

    Thanks also for your comments on the other thread! I am learning with much interest about experiences you guys had with mast cells and -inhibitors.
     
    Last edited: Apr 30, 2017
    Remy likes this.
  9. Remy

    Remy Administrator

    Change happens slowly around here though so please don't get impatient. If I can help you find anything in the meanwhile, please don't hesitate to reach out!
     
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