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.

So... We have a new name now then?

Discussion in 'General ME/CFS Discussion' started by Skippa, Aug 31, 2016.

  1. Skippa

    Skippa Anti-BS

    Messages:
    841
    Likes:
    2,960
    Hypometabolic syndrome.

    Frequent topics on the forum:

    "Should we use CFS or ME?"

    "What name gives a better description of our symptoms?"

    "Why don't people give sympathy if you tell them you've got CFS?"

    "What do you tell people is wrong with you?"

    Well, since the latest breakthrough study smash hit, we have our answer;

    "I'm not well"

    - "oh? What's wrong with you?"

    "I've got Hypometabolic Syndrome"

    - "nasty! What's that then?"

    "Parts of my body switched off and won't turn on again"

    - "poor you, sympathy empathy and more sympathy"

    Or perhaps CHS - Chronic Hypometabolic Syndrome

    Or PHS (lol) - Persistant Hypometabolic Syndrome
     
    J.G, Mel9, L'engle and 11 others like this.
  2. Justin30

    Justin30 Senior Member

    Messages:
    1,065
    Likes:
    1,280
    ME until true classification of subsets and further research is conducted.
     
    belize44 likes this.
  3. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

    Messages:
    1,199
    Likes:
    4,399
    SEID
     
    TrixieStix, Webdog and Valentijn like this.
  4. alex3619

    alex3619 Senior Member

    Messages:
    12,485
    Likes:
    35,018
    Logan, Queensland, Australia
    Its premature, we need more research, but it looks like a name change will arrive in the medium term. My effort was Persistent Hypometabolic Disease, or PHD.
     
    ghosalb, bertiedog, J.G and 25 others like this.
  5. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

    Messages:
    1,199
    Likes:
    4,399
    Future PHD in PHD.. nice
     
    deleder2k and Mel9 like this.
  6. Chrisb

    Chrisb Senior Member

    Messages:
    1,050
    Likes:
    5,354
    There was a time when, when asked the inevitable question "Do you think its depression?" I used to seize the bull by the clich├ęd horns and say "Yes .......but only in the sense that it is systemic metabolic depression." I feel almost vindicated..... but cannot advocate the use of the name!
     
    Mel9, L'engle, ahmo and 6 others like this.
  7. JohnCB

    JohnCB Immoderate

    Messages:
    350
    Likes:
    2,566
    England
    Just HD.

    Hypometabolic Disease

    No more syndromes, please.

    Or ME.

    Biological, organic ME, as it has always been.

    Perhaps ME also known as Hyper Metal Bol*** Disease

    Yeah, how do you spell that, one more time?
     
    L'engle, ryan31337, Justin30 and 7 others like this.
  8. JohnCB

    JohnCB Immoderate

    Messages:
    350
    Likes:
    2,566
    England
    Persistent Dauer Disease,
    Just no more syndromes, please.
    No more CBT,
    No more GET,
    Yes, it's Hypometabolic Disease.

    Hmm, it's difficult to get that H-word to scan.
     
    Mel9 and Skippa like this.
  9. JamBob

    JamBob Senior Member

    Messages:
    191
    Likes:
    764
    Nematodal Hypotmetabolic Disease (NHD). :sluggish::sluggish::sluggish:
     
    Izola, ryan31337, Countrygirl and 3 others like this.
  10. osisposis

    osisposis Senior Member

    Messages:
    389
    Likes:
    231
    I'm still not convienced that CFS and ME/CFS are the same thing/severities
     
  11. Denise

    Denise Senior Member

    Messages:
    1,095
    Likes:
    3,447
    On another thread I believe I saw hypothyroidism mentioned as a disease with hypometabolic characteristics. So could we claim hypometabolic as part of a disease name for us?
     
    Skippa likes this.
  12. TigerLilea

    TigerLilea Senior Member

    Messages:
    1,136
    Likes:
    3,405
    Vancouver, British Columbia
    Let's wait until several other researchers can replicate these findings. Remember XMRV? This could turn out to be another dead end. Only time will tell.
     
    deleder2k and Skippa like this.
  13. Skippa

    Skippa Anti-BS

    Messages:
    841
    Likes:
    2,960
    No, I don't remember XMRV :thumbdown:
     
    dannybex likes this.
  14. Theodore

    Theodore Senior Member

    Messages:
    686
    Likes:
    671
    France
    IMO "persistent" doesn't look as serious as "chronic" :lol:
     
    alex3619 likes this.
  15. snowathlete

    snowathlete

    Messages:
    3,312
    Likes:
    14,610
    UK
    Anything along those lines is better than ME. There isn't enough evidence of ME to justify the name which makes us a laughing stock to most in medicine. The only reason ME has been so popular is because CFS is even worse.

    But we can't change name until we have done enough replication and that may lead to more refinement of what the name should be anyway. Till then people should call it what they want but not waste too much effort fighting for one thing or the other as it looks likely that current names will be redundant before too much longer.
     
    Joh, TrixieStix, L'engle and 9 others like this.
  16. alex3619

    alex3619 Senior Member

    Messages:
    12,485
    Likes:
    35,018
    Logan, Queensland, Australia
    Yes, its too early for a change. Its not too early to start talking about it.
     
    mango, Webdog and Skippa like this.
  17. alex3619

    alex3619 Senior Member

    Messages:
    12,485
    Likes:
    35,018
    Logan, Queensland, Australia
    This cohort was most likely an ME cohort, its not clear how well it will translate to loosely defined CFS groups, expecially Oxford which is the worst definition of all.

    PS I am still going to use ME for strictly defined diagnoses, and CFS for the rest, and ME/CFS where its in doubt.
     
    osisposis likes this.
  18. dannybex

    dannybex Senior Member

    Messages:
    3,194
    Likes:
    2,171
    Seattle
    Consider yourself very fortunate.
     
  19. skipskip30

    skipskip30 Senior Member

    Messages:
    237
    Likes:
    1,409
    I will stick with ME/CFS until theres more research.
     
  20. Nielk

    Nielk

    Messages:
    6,877
    Likes:
    10,611
    Me patients suffer from chronic neuro inflammation. It seems to me that the cohorts in this study did not suffer from ongoing inflammation. The way I understand it - it's more like a hit and run scenarios where there was a n initial "hit" which might have been infectious or environmental or other stressor and then the stressor disappeared but the patients are left in this stuck hibernating state.

    This is not a description of myalgic Encephalomyelitis and that's why I have a hard time understanding it.
     
    Webdog likes this.

See more popular forum discussions.

Share This Page