1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Give ME the Money
Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
Discuss the article on the Forums.

New name for restless legs syndrome. Why not us?

Discussion in 'Other Health News and Research' started by barbc56, Jun 2, 2014.

  1. barbc56

    barbc56 Senior Member

    Messages:
    1,575
    Likes:
    968
    I saw my neurologist several weeks ago and on the diagnosis form there were the usual movement disorder as well as other sleep issues, plus Willis-Ekbom Disease but no RLS. I did not notice this until I got home, and when I looked it up sure enough it is now the name for RLS which like CFS is a dismissive name.

    I kind of like the idea of having our condition named after someone and am wondering if doing the same thing for me/cfs might add credibility to our diagnosis?

    I can also see the other side of this question for for a name change that is more discrptive of our DD.

    I go back and forth about which would be a more apt name.

    I'm kind onhe fence about this and there certainly could be other options of ways to rename our DD.

    It would be interesting to know other's thoughts about this
    Barb

    ETA If this in not the right placce for this thread, it would be appreciated. If someone one would move it. Thanks.
     
  2. WillowJ

    WillowJ Senior Member

    Messages:
    3,132
    Likes:
    2,809
    WA, USA
    wow, I did not know they were currently using names for disease labels.

    I learned not long ago that this was considered bad form (because the name would be changed to something more explanatory after an appropriate interval after the passing of the scientist in question, and the changing of titles is cumbersome and confusing... and because it is not always apparent who deserves the most credit... there may have been other reasons I've forgotten). This was discussed on this thread, along with various name options.

    But the RLS to Willis-Ekbom Disease may open up options I did not know were available. Cool.

    It would make sense in some ways to use a name, as mainstream scientists feel uncertain about every aspect of the pathology, and even we are not certain whether we have identified anything truly central as of yet.

    However lots of work has gone into ME/CFS as a transition form, and we might hope for a clearer name within a short time frame (1 year at best case scenario, though this is not guaranteed). So I am not certain of the value of pushing for a new name now, when we might just want to change it again to something better in a year or three.
     
  3. barbc56

    barbc56 Senior Member

    Messages:
    1,575
    Likes:
    968
    @WillowJ

    That's a good point especially since at this time we don't know the subsets of me/cfs:)

    I'm somewhat hopefull that good solid research may happen in the next decade. But with the constraints of economic woes and cutbacks it may be later than sooner.

    While I'm not advocating for a name change now, I found the name change for rls as well as the rationale behind it hopful.

    Barb

    ETA on second look, I don't think I posted the article I orginally meant to which goes into more detail about the rationale behind the name change but will hopefully find it so I can post it.:bang-head:
     
  4. manna

    manna Senior Member

    Messages:
    368
    Likes:
    257
    gall bladder meridian high/recovery phase starts at 11 p.m. ends at 1 a.m. this meridian runs down the full length of both legs ending on the second small toe i think. thats what i always thought rls was. in recovery, the last 2 weeks leading up to it, i get really crazy restless leg, every night, just before feeling near normal.
     
  5. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    670
    Australia, Melbourne
    yes I think we need more docs taking fuller lists of symptoms to clarify all the subsets

    Most places you are in and out in 15 minutes! not long enough

    Ally
     

See more popular forum discussions.

Share This Page