New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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Practical management of chronic fatigue syndrome or myalgic encephalomyelitis in childhood

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

  1. Keith Geraghty

    Keith Geraghty Senior Member

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    There is no screening within this management paper for secondary conditions, ie conditions that could cause childhood fatigue, such as mental health problems, drug abuse, alcohol addiction and eating disorders -- this a major concern --- there is a clear bias in this paper to self-reference and to push CBT-GET.

    The paper is largely written by psychologists and Crawley, who is their team lead. The paper is devoid of critical thinking.
     
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  2. trishrhymes

    trishrhymes Senior Member

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    I've just read it. It's shocking. Sleep deprivation, PEM being described in one place as getting a bit tired, and normal.... Increase active 10% per week. All the usual crap.

    I hope wherever anyone comes across this pile of crap on FB, Twitter etc. they will give a link to the infinitely better paper recently published by Nigel Speight and others. What a contrast.

    http://journal.frontiersin.org/article/10.3389/fped.2017.00121/full
     
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  3. slysaint

    slysaint Senior Member

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    Thinking about it this paper seems to be an attempt to bolster support for/justify her FITNET and MAGENTA trials,
    even tho we are still awaiting the result of two (?) of her other trials.

    And as @Valentijn pointed out there was also a plug for AfME children services..................but of course they don't support CBT/GET :rolleyes: and are 'outraged' by parents being accused of mistreating severely ill children with ME :rolleyes:

    So what's next GET and CBT on Wii ?
     
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  4. MEMum

    MEMum Senior Member

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    I have vague memories from our GOSH days that Wii Games, the ones where you hold something and simulate hitting a tennis ball or bowling were acceptable.
    This was before Wii Fit, which we never had.
    But this would have been contra to their 'limit your screen time to 4 hours a day' rule.
    Never mind, when I asked for rationale behind this, they said it mainly applied to the boys as they spend hours playing 'video games'.

    My clearer and better memories were of a very tasty Indian Restaurant near St Pancras, which served delicious food and a great lunch deal.
     
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  5. UKmum

    UKmum

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    I have to agree as a mother that finding a specialist service was useful as it is the only way of obtaining the necessary paperwork needed for the UK education system if your child is unable to attend school. Most pediatrician (not all) consultants are unwilling to commit in writing to the need for home tuition, GP letters are not usually accepted although legally I think they should be. The activity management we receive is really pacing but with the add on that if sustaining activity levels then look for a 10% increase. In practice this is impossible to do as life doesn't work in 10% equal increments so a measure of pragmatism is taken.

    There is a chart for sleep that the OT's use. Depends on age but approx 8 to 9 hours sleep for 14/15 year old is recommended. More for younger children. Must be right if there's a chart!
     
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  6. 2kidswithME

    2kidswithME

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    Ditto! By the time we got to the 3rd paediatrician (no fault of ours) all we needed were the all important letters for school, which were then disbelieved. By then we had worked out management ourselves.

    I do remember phone calls regarding keeping child benefits for my ill children doing part -time A levels (as in one or two subjects, not the usual 3), something about could they add in more school midway thru the academic year? Well, no actually, as you cannot start another subject mid year!

    10% increases were all very well in theory, it in practice impossible to implement -- half lessons in school?! Not really!
     
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  7. MEMum

    MEMum Senior Member

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    Fortunately, my daughter was just starting sixth form, (post compulsory education then). Her teachers who'd known her up to GCSEs could clearly see that she was ill and had not suddenly undergone a complete personality change.
    Her older brother had also been at the school.

    I think a couple of the most bizarre suggestions from GOSH early on in her restarted Year 12 were:
    • a recommendation that she play for 7 minutes in a netball match she desperately wanted to be in. She hadn't played netball for at least 9 months.
    • a planned timetable of two or three hours each day, mainly including the lunch hour.(Just corrected my typo of linch hour!) This started at 11 am most days despite the fact that her body and brain did not get going until after midday, even if she was physically "up". Also she had not been to more than one or two individual afternoon lessons a week for the previous month. Oh and in addition, the majority of the lessons were in the new A-level she had enrolled for to replace Art which she had loved. The art teacher had been unbelievably rude to her in front of all her classmates the previous year. She had made a great effort to attend a lesson and had been doing her best to keep up at home. Comments such as "Oh nice of you to turn up, now you are here are you planning on staying etc"
     
    Last edited: Jul 1, 2017
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  8. Sea

    Sea Senior Member

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  9. simeyss

    simeyss

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    "Children and families are reminded that it is normal to feel tired at times, just not consistently so and not to the extent of significantly limiting functioning."

    Yes, exactly. And it is a sign of illness, not faulty thinking. The cruelty of the suggestion that feeling so ill all the time must mean that the child is 'doing it wrong' never ceases to be astounding.
     
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  10. Sean

    Sean Senior Member

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    Exactly. It is just ludicrous.

    How do I get my grocery shopping done on this basis? Week 1 – travel 1/2 way there, then turn around and go home? Week 2 – travel 3/4 of the way, then turn back? Do I only buy 1/2 the things on my shopping list on the first visit, then 3/4 on the second? Etc.

    There are so many things in our lives that simply not amenable to this kind of simplistic graduated increase in levels of involvement or activity.

    Their drivel is devoid of any connection to the real world. It is just playing dishonest and meaningless games with words and numbers to give the impression they know what they are talking about, and to place the responsibility for any failure on their part back on patients. It is pseudo-science, par excellence.

    This stuff is what real insanity looks like.
     
    Last edited: Jul 2, 2017
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  11. AndyH

    AndyH

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    "Postexertional malaise is a core symptom"
    So she now admits that PEM is a prerequisite.
    So is this an admission that all the research she's done that hasn't include PEM as a prerequisite needs retracting?
    What about FitNET? There's no requirement for PEM, let alone the NICE diagnostic prerequisite for PEM with a delayed onset of 'at least' 24 hours.
     

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  12. Chrisb

    Chrisb Senior Member

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    I must admit to not yet having read the whole paper in detail. I was however struck by "Figure 1".

    Whenever I see so crude a representation of the "boom and bust" cycle, without further explanation, I take the view that those doing the writing have not been paying attention. It may accurately represent the experience of some, though I have doubts. It certainly fails to represent the experience of many, for whom the downturn should be an almost perpendicular line, followed by a flat line, before the upturn.

    It may be argued that this is not the purpose of so schematic a representation. Fair enough; but in that case there should be an explanation. If it be merely intended to demonstrate a succession of peaks and troughs it adds nothing useful.
     
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  13. Snow Leopard

    Snow Leopard Hibernating

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    "Boom and bust" is a myth.

    We don't "boom".
     
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  14. Chrisb

    Chrisb Senior Member

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    In absolute terms I wholly agree. We never get to anywhere near previous, or hoped for, levels. We "boom" only relative to the "bust". Ideally such "graphic" representations ought to have a flattish line somewhere above the "boom" indicating a "normal" level of activity.
     
    Last edited: Jul 2, 2017
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  15. trishrhymes

    trishrhymes Senior Member

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    Someone once tried to suggest that if my daughter found trips to the library too exhausting, she could break up the activity into smaller parts. So was she supposed to travel to the library one day, choose her books the next day and travel home the day after? Sometimes the people administering this stuff don't engage their brains.

    As for the idea that Crawley now includes PEM in her definition. All very well, but she hasn't a clue what PEM is. It's not just feeling fatigued after activity.
     
  16. AndyH

    AndyH

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    "A graded approach to stabilising and then increasing activity (physical and mental) and sleep management strategies are used to tackle the behavioural cycles."
    Really! :(

    Perhaps they should read:
    "Medial prefrontal cortex deficits correlate with unrefreshing sleep in patients with chronic fatigue syndrome", which states: "This study is the first to report that brain structural differences are associated with unrefreshing sleep in CFS. This result refutes the suggestion that unrefreshing sleep is a misperception in CFS patients"
     

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  17. simeyss

    simeyss

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    And they also say this (which would essentially rule out exercise for many young people for whom it would be prescribed):

    "The training heart rate will aim to rise between 50% and 70% of their maximum heart rate. Using a heart rate monitor can avoid over exercising which can lead to an exacerbation in symptoms."

    However, they also say this:

    "It is important to warn the young person and their parents that there can be a slight increase in symptoms when physical activity levels are increased which is normal."

    Either they are just paying lip service in their acknowledgement of PEM as a core symptom, or they don't understand PEM, or both.
     
  18. AndyH

    AndyH

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    An increase in symptoms lengthens the illness, makes recovery harder and worsens prognosis, so this is harm caused.
    Mismanagement is clearly the no.1 cause of an exacerbation in symptoms.
    Causing harm is a frequent issue in ME when over exertion is not being prevented.
    Focus should be on preventing harm, not covering up harm caused by describing the setbacks as normal fluctuations in the illness. I do not accept that they are normal. All the evidence I have seen when speaking with sufferers is that if exertion is managed properly, setbacks are avoidable unless caused by another illness.
     
  19. Valentijn

    Valentijn Senior Member

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    That's an awful lot of big words for a poor little quack to read! And everyone knows that reading biomedical research is a gateway to believing ME can't be cured by taking a walk and thinking positive thoughts. If they stop believing, how can they cure the world?!? :rofl:

    Ah, but that's only for GET. Give it a different name, like "Activity Management," with the same basic goals and instructions, and just ignore those pesky biometrics. We shouldn't let our physiology get in the way of their beliefs, after all! :rolleyes:
     
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  20. TiredSam

    TiredSam The wise nematode hibernates

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    She won't read them, she'll just copy and paste them into her next paper, next to:

    Anything that fills space and looks sciency is good, no-one in her bubble will ever call her out for inconsistency. It enhances her reputation to have one more publication that can be cited by her cronies as part of their "growing body of scientific literature written by us that shows we are right", so the more papers she can get out the better. Doesn't matter what's in them, no-one in her circle will ever criticize her, and she doesn't care what those outside her circle think, it's never stopped her getting funding before so why worry?
     
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