The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

Needed: short, non-technical description of CFS for friends, doctors, etc.

Discussion in 'General ME/CFS Discussion' started by Sidney, Nov 10, 2016.

  1. Sidney

    Sidney Senior Member

    Messages:
    118
    Likes:
    138
    SF Bay Area, USA
    Note: This thread was split from an earlier thread.

    Does anyone have a respectable, not too long, not too scientific, description of CFS, that could be printed and given to friends, therapists (physio, dentists, etc). Just to give an accurate idea of what it is actually like.
    People tend to say "oh, I wish I could be in bed all day", or " I'm sure I have CFS, I want to take naps all the time", or "Rest up, then you'll be able to go out tomorrow "... Etc. Total misunderstanding, but how do you explain?

    A different name would help, but the med profession doesn't seem to be able to settle on one.

    I feel that a one page medical info sheet might be helpful.

    I am so sick of saying 'fine' when asked how I am, when my mind is begging to a crash to alleviate a bit, for this meeting to be over so I can get home somehow, and back to bed.

    There is probably such a thing somewhere on this site, but I haven't been able to find it! Any pointers appreciated!
     
    Last edited by a moderator: Nov 10, 2016
    Luther Blissett and actup like this.
  2. Mary

    Mary Senior Member

    Messages:
    3,135
    Likes:
    7,194
    Southern California
    To start a new post (which is what you really should do for best results! ;) instead of adding on to this one), click on "forums" at the top of the page. That will take you to all the various forums on this board. then you pick the appropriate forum for your thread and click on that. For your query, I'd suggest "General - ME/CFS Discussion", although if you see a forum you think is more appropriate, use that. And when you click on a forum, you will see a box on the upper right which says: "post new thread" - click on that and that's where you will be able to post your new thread.
     
    Last edited by a moderator: Nov 10, 2016
    Luther Blissett, Sidney and actup like this.
  3. caledonia

    caledonia

    Messages:
    4,356
    Likes:
    3,473
    Cincinnati, OH, USA
    I just tell people I have a chronic illness kind of like MS called ME which stands for myalgic encephalomyelitis. That gives them enough info to know that it's very serious, and it avoids the "fatigue, I have that too" discussion. They don't usually ask for more info than that.
     
  4. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,990
    Likes:
    12,987
    Sth Australia
    You could try handing them something like the ME/CFS symptom list by Katrina Berne http://wwcoco.com/cfids/bernesx.html and highlight the part on the very last page that says "the total number of symptoms experienced all of the time (11 symptoms) and the average total number of symptoms experienced by each patient some of the time (18.6 symptoms).",

    I for added empathis highlighted all my symptoms which was nearly all on that list. List such as this should help them stop mistaking it for fatigue. (I think it turned out to be 2 and a little bit printed pages when I printed it but as its mostly just a column of symptoms, its very easy for anyone to read get a good idea of it from just a glance and reading the last part about the number of symptoms in CFS
     
    Last edited by a moderator: Nov 10, 2016
    Luther Blissett, Mary and actup like this.
  5. mango

    mango Senior Member

    Messages:
    905
    Likes:
    4,981
  6. Sidney

    Sidney Senior Member

    Messages:
    118
    Likes:
    138
    SF Bay Area, USA
    Thank You !! This sounds totally brilliant. I intend to begin immediately.
     
    Luther Blissett likes this.
  7. Sidney

    Sidney Senior Member

    Messages:
    118
    Likes:
    138
    SF Bay Area, USA
    I am printing out the heart of this for family and
    Thank You Mango: This is wonderful. I am printing out the heart of this for family and any therapists I have to cope with.
    I can't believe all the help that has appeared - in one day -from this list. I think you all can imagine how grateful I am: you've all fought invisibility.
     
  8. Sidney

    Sidney Senior Member

    Messages:
    118
    Likes:
    138
    SF Bay Area, USA
    Thank you so much for this, taniaaust1. This is the most complete symptom list I have seen - I am doing ad you did, copying onto a document so I can highlight. The list seems to cover pretty much everything; and the number of highlights should alert people (perhaps especially doctors, dentists, etc), even if they don't bother to read what the symptoms actually are...
     
    Luther Blissett likes this.
  9. KME

    KME

    Messages:
    91
    Likes:
    542
    Ireland
    I like p.27-28 of the International Consensus Primer. http://www.investinme.org/Documents...nternational Consensus Primer -2012-11-26.pdf Those pages are designed to explain paediatric ME to educators and co, but most is valid for adults also, and they have nice snappy explanations like this:

    "[People with ME] can’t produce the energy they need. Simple activities are exhausting."

    "Hallmark feature: The body is unable to produce sufficient energy on demand, like a furnace that has its pilot light on but it cannot be turned up to address the need for additional heat."

    "Myalgic encephalomyelitis (ME) is a severe, complex neurological disease that affects all body systems. The initial infection may damage the brain and cause profound dysregulation of the nervous and immune systems, impair cellular energy production, and cardiovascular function. ME is more debilitating than most diseases. Symptom severity and hierarchy of symptoms in children can fluctuate rapidly and may appear to be erratic."

    This is nice too, from p.1, for health professionals or people who need a bit of jargon to take it seriously:

    Myalgic Encephalomyelitis (ME): complex, acquired multi-systemic disease
    Pathophysiology:
    Profound dysfunction/dysregulation of the neurological control system results in faulty communication and interaction between the CNS and major body systems, notably the immune and endocrine systems, dysfunction of cellular energy metabolism and ion transport, and cardiac impairments.
    Cardinal symptom:
    a pathological low threshold of fatigability that is characterized by an inability to produce sufficient energy on demand. There are measurable, objective, adverse responses to normal exertion, resulting in exhaustion, extreme weakness, exacerbation of symptoms, and a prolonged recovery period.

    Boom.

    A medical 1-pager is a great idea. I have one with headings and bullets and it came in so handy when I unexpectedly ended up in hospital recently. I have headings like top 3 symptoms, what exacerbates my condition, my baseline functioning, what would help minimise the impact of X on my condition, medication reactions. They really did read it.

    If in doubt, saying myalgic encephalomyelitis really fast can work a treat. If you get a "Huh?", a little one-liner like "It's a neuro-immune disease that profoundly alters energy production/affects all systems of the body" can go a long way.
     
    Jennifer J, Sea and Sidney like this.
  10. Sidney

    Sidney Senior Member

    Messages:
    118
    Likes:
    138
    SF Bay Area, USA
    THANK YOU. I am going to short-cut, and copy all of your selections. BOOM

    is right, and I am so grateful to you - and the previous posts! - for doing the work for me. I'm sure you understand the state, where you just can't deal with it.
     
    Last edited by a moderator: Nov 12, 2016
    Jennifer J likes this.

See more popular forum discussions.

Share This Page