When the 'Holiday Season' Is No Holiday at all for Those With ME/CFS
Is December getting to you? Jody Smith shares some thoughts on some of the struggles that all too often attend this time of year ...
Discuss the article on the Forums.

Practical management of chronic fatigue syndrome or myalgic encephalomyelitis in childhood

Discussion in 'Latest ME/CFS Research' started by Kati, Jul 1, 2017.

  1. Luther Blissett

    Luther Blissett Senior Member

    Messages:
    724
    Likes:
    4,111
    Yorkshire, England
    You're all so ungrateful.

    I'm applauding this breakthrough finding that activity patterns in childhood ME follow a perfect sine wave. (Figure 1) This will surely lead to the Nobel.

    Or maybe someone had some crayons and took all of 15 seconds to draw a pretty picture, taking all the care in the world to present data clearly. :rolleyes:
     
    Orla, merylg, Dolphin and 11 others like this.
  2. MEMum

    MEMum Senior Member

    Messages:
    426
    Likes:
    2,179
     
  3. Jo Best

    Jo Best Senior Member

    Messages:
    1,031
    Likes:
    6,222
    You might not be far off the mark there, as her colour coded charts for high, medium and low energy used for finding a baseline to stabilise the supposed pattern of boom and bust was designed by one of her young patients, so it's quite conceivable that s/he (patient) produced a simplistic graph to help her/his exceedingly dim doctor (EC) understand that on days when patients feel a bit better they are so keen to do more that they suffer worse PEM.
     
    Last edited: Jul 3, 2017
  4. Jo Best

    Jo Best Senior Member

    Messages:
    1,031
    Likes:
    6,222
    This paper is like a licence to commit state-sanctioned child abuse.

    The assumption that negative tests means no disease is present is (enter word of choice).

    Timed perfectly for the impending consultation by NICE whether to review the guideline.

    NICE will wait for Esther Crawley's trials to provide evidence for existing policy (repeat of PACE).

    Action for ME in prominent position to advertise their 'new' Children's Services.

    BBC File on 4 reinforces that AfME helps children/parents faced with 'misunderstanding' of this 'complex issue'.

    Everyone affected will turn to AfME and Bath for advice, support, specialist treatment.

    Status quo.

    ETA: and of course, the money will keep rolling in.
     
  5. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    4,616
    Likes:
    12,462
    South Australia
    The Nobel will be mine!

    Here is my ME/CFS activity equation:

    f1.jpg
     
    Orla, lemonworld, 2kidswithME and 5 others like this.
  6. AndyH

    AndyH

    Messages:
    62
    Likes:
    431
    That sums it up.
    China has the right idea for people that produce papers like this.
     
  7. BruceInOz

    BruceInOz Senior Member

    Messages:
    172
    Likes:
    1,003
    Tasmania
    I presume you chose a Fourier series so you could represent (with suitable choices of the a_n and b_n in your equation) the sudden crash and slow recovery that is PEM. Not a sine wave at all!
     
    Luther Blissett and trishrhymes like this.
  8. RogerBlack

    RogerBlack Senior Member

    Messages:
    896
    Likes:
    2,896
    It is important to remember that there has been essentially no research on this.
    Despite it being something that could be done with questionnaires or diaries only, nobody has actually looked.
     
    Orla, MEMum, SamanthaJ and 2 others like this.
  9. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    4,616
    Likes:
    12,462
    South Australia
    The equation represents all possible activity curves. ;)
     
    Dolphin, MEMum, BruceInOz and 3 others like this.
  10. slysaint

    slysaint Senior Member

    Messages:
    2,124
    Likes:
    11,476
    It's strange that all these 'ME experts' have started saying they acknowledge PEM (which is more and more being cited as the key symptom of ME) and yet they don't appear to have the foggiest idea what it is.
    In this report it says:
    "Postexertional malaise is
    a core symptom and is an increase in fatigue and
    symptoms after doing more than usual. For most
    children, this means that they miss time off school
    at the end of the week. In those who are severely
    affected they may have an increase in symptoms
    after a small amount of activity such as walking
    down stairs."

    Given that there are moves to change the name to 'Exertion intolerance' I would have thought the clue is in the name.
    What is exertion for one person may not be exertion for someone else. It is not necessarily due to just 'doing more than usual'.
     
    Last edited: Jul 2, 2017
    Orla, MEMum, Jo Best and 6 others like this.
  11. Luther Blissett

    Luther Blissett Senior Member

    Messages:
    724
    Likes:
    4,111
    Yorkshire, England
    Thanks Jo, I feel a bit bad now. Apologies to the poor patient if they ever read this.

    I'm glad for this post, as Snow Leopard's post whooshed over my head! I only know sine waves from music, so my best insight into the equation was that if you turn your head 90 degrees left, it says M8 :p
     
    Jo Best and BruceInOz like this.
  12. NelliePledge

    NelliePledge plodder

    Messages:
    774
    Likes:
    3,526
    hi @slysaint Ive seen exertion intolerance mentioned a couple of times is this to replace PEM as a description or as well as to describe a different aspect. i do get the delayed reaction waking up feeling terrible but also get the no power feeling during exertion usually when walking any distance which to me seems to fit with exertion intolerance wheras it doesnt fit with post exertion as it is during exertion. Any suggestions of where to read up on this greatly appreciated. cheers N
     
    Luther Blissett and slysaint like this.
  13. slysaint

    slysaint Senior Member

    Messages:
    2,124
    Likes:
    11,476
    I think it stems from the IOM committee discussions when they came up with SEID as a proposed new name to replace CFS. Recently read it on another thread (D Tullers new blog), although I have just looked thro this briefly

    http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx

    and all I could find was this
    "
    central characteristic of this disease—
    the fact that exertion of any sort (physical, cognitive, or emotional)—can adversely affect patients in
    many organ systems and in many aspects of their lives."

    so maybe was jumping the gun a bit (?) but personally it spells it out much clearer (ie exertion intolerence).
     
    Last edited: Jul 3, 2017
  14. lemonworld

    lemonworld

    Messages:
    99
    Likes:
    538
    Norway
    I'm confused about something. Forgive me if this is a dumb question, but if they acknowledge PEM as a core symptom, how does that even work with their understanding of the illness? If it's behavioral and false illness beliefs, how come that manifests as PEM in most patients? How come we even have similiar enough symptoms for this "illness" to have a name and specific traits, if it's just in our mind?
     
  15. RogerBlack

    RogerBlack Senior Member

    Messages:
    896
    Likes:
    2,896
    If you try to deconstruct this, you get no further than 'over-attention to normal physiological response to exercise' - pretty much.
    Which is basically utterly ridiculous if you think about it for more than fourteen seconds.
    Perhaps they've been busy and not had the time in the last couple of decades.

    In short, they are saying normal feelings of tiredness, and delayed onset muscle soreness following exercise are the whole important spectrum of symptoms, and that the rest are 'somatic' symptoms like you get in depression. Combine this with muscle wasting to drive DOMS, and you're golden, perhaps throw in 'poor sleep hygiene' as an excuse for some of the tiredness if you're feeling ambitious.


    Unfortunately, DOMS does not cause muscle pain in non-exercised muscle groups in the next several days. Or cause cognitive issues. Or ...

    And the timescales are all wrong - you simply can't explain how you can do something one day, and then the next day the same thing will trigger PEM.

    Never mind that nobody that's looked has actually found any deconditioning.

    All other interpretations of the symptoms are handwaved away.
     
    Orla, Dolphin, MEMum and 6 others like this.
  16. Jo Best

    Jo Best Senior Member

    Messages:
    1,031
    Likes:
    6,222
    Aw no, don't feel bad, my comment was tongue in cheek. I was really just making the point that the most useful advice from Bath wasn't the bainwave of a supposedly specialist paediatrician, but provided to her by a young patient, which is great, except that said paediatrician goes on to teach others that these same young patients have faulty thinking and behaviours, including 'unhygienic' sleeping habits and probably spending too much time on video games, can't be relied upon to read the right messages from their own bodies, and need to follow a strict routine.
     
  17. Revel

    Revel Senior Member

    Messages:
    432
    Likes:
    2,558
    Thank goodness she has the convenience of modern technology to blame as contributing to the condition of her young patients.

    I wonder, what would she make of those of us who were sick as children in the 1970s - regimentally strict bedtime, no video games, mobile phones or TV to distract our slumber . . .? :rolleyes:
     
  18. Jo Best

    Jo Best Senior Member

    Messages:
    1,031
    Likes:
    6,222
    Child labour I shouldn't wonder. She's found that 'CFS/ME' is more common among the poor doncha know. :eek:
     
  19. Revel

    Revel Senior Member

    Messages:
    432
    Likes:
    2,558
    Aye, sweeping those chimneys for the well-to-do folk was tiring, but at least it made sure we got a good night's sleep . . . ;)
     
    Hutan, Countrygirl, SamanthaJ and 5 others like this.
  20. TiredSam

    TiredSam The wise nematode hibernates

    Messages:
    2,677
    Likes:
    21,549
    Germany
    I'm sure that's when my flue-like symptoms started.
     

See more popular forum discussions.

Share This Page