Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

Creating a resources page for patients - can you help?

Discussion in 'Advocacy Projects' started by JaimeS, Jun 3, 2016.

  1. JaimeS

    JaimeS Senior Member

    Messages:
    3,199
    Likes:
    11,799
    Mid-Ohio Valley, United States
    A small team at #MEAction (read: me, Paige, Stacy) is going to be working on a rough draft of a resources page for PWME. It would be amazing if you guys could paste the resources you have found to be most interesting, and tag other individuals who might be able to help locate the best tidbits.

    This is what we're looking for right now:

    1) General all - in - ones, like @Hip 's inestimable Road Map.

    2) A good document that describes how to tell if you have ME or describes 'ME in a nutshell'.

    3) Business-oriented resources for PWME, such as notes you can give to your physician, employer, or disability lawyer

    4) Locations of ME-friendly clinicians of any specialty -- let's stop going to those who denigrate PWME! Please list their specialty / area of focus and location.

    5) Places to go for support (of course, we're a little biased....) Local support groups are not just 'okay' but very desirable. So are groups on FB for specific things, maybe not necessarily directly ME-focused but peripherally related, like a forum for those with orthostatic intolerance, e.g.

    6) Any other, similar pages that other advocacy organizations have made in the past that you think might be helpful as we create ours.

    7) Pages here on Phoenix Rising (or other forums) that are considered generally invaluable by the community.

    8) Online counseling services, debt help, good lawyers -- think outside the box. What have you needed or wished you had within the past year that a good resources page might have been able to provide?


    Please include locations for 4 & 5 if you can; we are creating a map for PWME to find resources close to them, and we would love for it to grow into an invaluable tool! Please also rate the physicians listed there already, so that people can go to their doctor well-informed.

    Even if you know for a fact that I know about a resource, if you have a ready link, please paste it in your reply. We are trying to spend one afternoon getting this rough draft together, and any help you can provide would be so appreciated.

    Please respond by using the categories above, and consider #8 to be "other". That will help us collate the information in a meaningful way, very swiftly.

    Thanks so much for all you guys ALREADY do to keep patients safe, well-informed, and in the best possible health they can be with this crappy illness. We will be gathering info through Sunday afternoon for the draft, but please feel free to keep posting and we will add to the page gradually.

    Jaime
     
    erin, Jennifer J, ahmo and 7 others like this.
  2. Sasha

    Sasha Fine, thank you

    Messages:
    12,783
    Likes:
    34,200
    UK
    @JaimeS - I don't know if you're aware of Phoenix Rising's info pages:

    http://phoenixrising.me/

    Most of them were done by Cort, and I've also provided some new ones and have done some editing of Cort's to bring them up to date (mostly a question of removing old links). I don't know if any of them are the sort of thing you're looking for.
     
  3. JaimeS

    JaimeS Senior Member

    Messages:
    3,199
    Likes:
    11,799
    Mid-Ohio Valley, United States
    I'm just getting all the blogs there...
     
    Sasha likes this.
  4. Andrew

    Andrew Senior Member

    Messages:
    2,198
    Likes:
    2,428
    Los Angeles, USA
    I don't mean to be a party pooper, but setting all that up is a lot of duplication of effort. Maybe some of it can be handed by pointing to other sites.

    That said, here's my summary my blog.. I put up the first several posts to help others. Feel free to copy, point, modify, or whatever (assuming you want any of it).

    What I add to this is every patient should know about Phoenix Rising. And, I have a slew of links to other sites if you want them. Thing is, though. you will have to sort through them to see which are still of value.
     
    Ritto and Jennifer J like this.
  5. Snowdrop

    Snowdrop Rebel without a biscuit

    Messages:
    2,896
    Likes:
    10,090
    I will help if I am able and I have things to offer.
    Meanwhile, would it be useful to also have a resource section on the history of ME for those who want to know more?

    We could use Mary Dimmock's excellent document and have suggested reading of Osler's Web (don't know of others). I would provide links--to Margaret Williams doc also.

    8) For a disability lawyer in Toronto: http://www.lostjobs.ca/en/about-us.html
    They know about ME -- Hugh Scher was at a talk given by Byron Hyde in Toronto some time ago.

    ME/FM national network has a legal library (I don't know how up to date the info is but here are some links: http://www.mefmaction.com/index.php?option=com_content&view=article&id=272&Itemid=277

    http://www.mefmaction.com/index.php?option=com_content&view=article&id=258&Itemid=279

    Disability guide: http://www.mefmaction.com/index.php?option=com_content&view=article&id=425&Itemid=364

    Don't know if that helps.
     
    Last edited: Jun 3, 2016
    Jennifer J, JaimeS and mango like this.
  6. *GG*

    *GG* Senior Member

    Messages:
    6,148
    Likes:
    4,741
    Concord, NH
    Include the links here? Or did I miss you send an email to someone?

    GG
     
    JaimeS likes this.
  7. JaimeS

    JaimeS Senior Member

    Messages:
    3,199
    Likes:
    11,799
    Mid-Ohio Valley, United States
    Yep, include links here! And please do number them to show to which categories they belong. Thank you!

    -J
     
  8. *GG*

    *GG* Senior Member

    Messages:
    6,148
    Likes:
    4,741
    Concord, NH
    Jennifer J and JaimeS like this.
  9. JaimeS

    JaimeS Senior Member

    Messages:
    3,199
    Likes:
    11,799
    Mid-Ohio Valley, United States
    Thank you so much, @*GG* !
     
    *GG* likes this.
  10. JaimeS

    JaimeS Senior Member

    Messages:
    3,199
    Likes:
    11,799
    Mid-Ohio Valley, United States
    Bump! Starting work on this tomorrow, everyone!
     
    sarah darwins likes this.
  11. ahimsa

    ahimsa Senior Member

    Messages:
    1,844
    Likes:
    4,274
    Hi @JaimeS - I sent you a private message with some general comments.

    I've posted a few links here. I hope some of them are helpful.

    I assume you're looking for something other than direct links to various diagnostic criteria?

    Here's the Solve CFS page - http://solvecfs.org/what-is-mecfs/

    Here's an article discussing different diagnostic criteria - http://tidsskriftet.no/article/3404849/en_GB

    The following links are disability related so I think they fit here?
    (the term "business-oriented" kind of confuses me so let me know if I've misunderstood)

    Subsection of Mass CFIDS Assn - https://www.masscfids.org/disability-links
    Workwell Foundation CPET - http://www.workwellfoundation.org/testing-for-disability/
    (obviously need to warn people about potential crash from CPET)
    This web page is old but has some good links - http://www.cfids-me.org/disinissues/
    (you'd have to sort through them to find the ones still working & still relevant)

    For ME/CFS support I'm sure you know all the ones I use! (these forums, ME Action)

    The following links are not all support. But since you mentioned Orthostatic Intolerance in this category then I listed all my OI related links here:

    DINET links
    Home page - http://dinet.org/
    Treatments for POTS & NMH/NMS - http://dinet.org/index.php/information-resources/pots-place/pots-what-helps
    Forums - http://forums.dinet.org/

    Dysautonomia International
    General patient info - http://dysautonomiainternational.org/page.php?ID=36
    Johns Hopkins OI handout - http://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf
    (this OI patient handout used to be on old CFIDS Assn website, can't find it on Solve CFS website - a pet peeve of mine is that most www.cfids.org links get a 404 error from Solve CFS)

    http://www.cfsnova.com/qnaOI.html

    http://www.oiresource.com/oicfs.htm

    Don't forget to include YouTube links. I usually prefer to read information, actually, but lots of people prefer videos. And for some information a video can be easier to understand.

    There are a lot of webinars on the SolveCFS channel that might be useful, there's the Mark Van Ness presentation about exercise testing (CPET) that is helpful, and probably a whole bunch of other videos I'm not remembering now.
     
    Dainty and Jennifer J like this.
  12. Mark

    Mark Former CEO

    Messages:
    5,224
    Likes:
    6,197
    Sofa, UK
    It would be nice if we could update PR's resource and info pages further at the same time. Sasha did some great work on this but there's a lot more that has needed doing for a long time. Perhaps we can do both jobs at the same time? At PR's end, the issue here is just the need for someone reliable to check the proposed updates to make sure they're solid. As usual, I won't have time to oversee this myself for the foreseeable future because I'm busy writing up my article on IiME11. Perhaps somebody else would like to volunteer to oversee a review of PR's info pages at the same time, in co-ordination with MEaction's work on this?
     
    mango and Jennifer J like this.
  13. JaimeS

    JaimeS Senior Member

    Messages:
    3,199
    Likes:
    11,799
    Mid-Ohio Valley, United States
    Thank you sooo much, @Mark and @ahisma ! I'm also finding that MEpedia's resource page is rich in information -- but somewhat hard to follow, for me personally.

    There are two areas for which we really do need help.

    1. Working on map.meaction.net
    I can see this being SO USEFUL, especially to new patients. Imagine not having to go through the phalanx of patronizing, close-minded medicine before finding someone who can at least help diagnose you and provide palliative treatments. That would be huge. Putting your physician there is the work of 5 minutes. If you're not tech-oriented, you can reply here and me or one of the team will put them up. Even non-ME docs who are ME-friendly would be great.


    2. Working on country-specific resources for disability help, insurance help, etc.
    We have a few of these up on MEpedia, but they are sparse. Look here and click on where you live to see what is available.​
     
    ahimsa and sarah darwins like this.
  14. JaimeS

    JaimeS Senior Member

    Messages:
    3,199
    Likes:
    11,799
    Mid-Ohio Valley, United States
    PR is welcome to use anything I produce!
     
  15. Mark

    Mark Former CEO

    Messages:
    5,224
    Likes:
    6,197
    Sofa, UK
    Thanks, but we have nobody available to do that: what we would need is somebody to actually edit the relevant pages. Unless and until somebody volunteers to do something practical to help out the overstretched volunteers at PR, we will remain at a standstill.
     

See more popular forum discussions.

Share This Page