The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
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. Kati

    Kati Patient in training

    Messages:
    5,423
    Likes:
    19,307
    For what it's worth.

    Practical management of chronic fatigue syndrome or myalgic encephalomyelitis in childhood

    http://adc.bmj.com/content/early/2017/06/27/archdischild-2016-310622

    1. Amberly Brigden1,
    2. Maria Loades1,2,3,
    3. Anna Abbott3,
    4. Joanne Bond-Kendall3,
    5. Esther Crawley1
    Abstract:

    Paediatric chronic fatigue syndrome or myalgic encephalomyelitis affects at least 1% of secondary school children in the UK and is very disabling. Treatment is effective but few children get a diagnosis or access treatment. This paper summarises what we currently know about diagnosing and treating this important illness in childhood

    note: it is behind a pay wall. I did not look for the full text.
     
  2. hixxy

    hixxy Senior Member

    Messages:
    1,102
    Likes:
    1,255
    Australia
     
    ladycatlover, Dolphin, mango and 10 others like this.
  3. Valentijn

    Valentijn The Diabolic Logic

    Messages:
    14,019
    Likes:
    43,195
  4. Valentijn

    Valentijn The Diabolic Logic

    Messages:
    14,019
    Likes:
    43,195
    Best to read this one on an empty stomach.

    The lack of a citation for the supposed effectiveness of treatment is interesting:
    Wow, they mention PEM! But not the lack of it used in recruiting patients for the studies they get their data from. And no clue about what constitutes severe ME, as usual:
    Ah, some citations for the claims about the benefits of the quack clinics. Notably, they don't include broad claims of "effectiveness" now:
    Also a bit of a switch from stair-climbing exhaustion being the litmus test for severe CFS:
    They seem to be badly abusing the requirement of post-exertional "malaise or fatigue" in NICE, and are also misstating the suggestion to look for another diagnosis only if none of the listed symptoms or missing, rather than any of them:
    comparison.jpg

    But what's the actual management recommended? No shockers here, just more idiocy and insinuations regarding fat neurotic kids staying up all night:
    CBT has not been proven effective in any ME patients, due to poor methodology. But at least they agree there's no support for GET in kids:
    Yet the recommendation is apparently to do GET, unless the kid is a head case (or, you know, actually ill and disabled) and has to be brainwashed first:
    This is badly misleading. "Boom" days are active only relative to the bad days. Kids with ME are not being over active in any normal sense of the word on those days:
    The magical Figure 1, with the usual complete failure to grasp or reflect reality:
    figure.jpg

    This still under the heading of Activity Management, which is apparently separated from GET. I don't see the distinction, except that it's done without the precautions of GET, without an expert, and presumably without the bad reputation of GET:
    I frankly do not understand the distinction from their Activity Management, nor why Activity Management is exempt from precautions described for GET. But at least the mild-moderate qualification excludes anyone who has symptoms from walking down a flight of stairs, based on their definition in the intro :rolleyes::
    This isn't GET, it's pacing:
    And this is speculative bullshit based on the effects of exercise in healthy people. Objective GET data from adult studies disproves it in the case of ME as well:
    Unlike the Activity Management victims, the GET victims get a heart rate monitor, with thresholds that most ME patients will exceed just standing up and walking across the room:
    It's normal for the treatment to make you think you're sicker, but you aren't, so it's okay. You might just need to do a bit less:
    To be continued ...
     
    snowathlete, merylg, Dolphin and 21 others like this.
  5. Revel

    Revel Senior Member

    Messages:
    384
    Likes:
    2,210
    " . . mothers reported finding specialist CFS/ME services useful in recognising and acknowledging their child’s condition. . ."

    Am I wrong in speculating that there is an insidious reason behind their emphasizing "mothers", rather than "parents"? :meh:
     
  6. Valentijn

    Valentijn The Diabolic Logic

    Messages:
    14,019
    Likes:
    43,195
    The cognitive-behavioral model may suggest this, but it's unsupported by evidence, and contradicted by a lot more evidence:
    I fail to see what's wrong with anyone (healthy or ill) resting in response to fatigue:
    There's no proof that resting in response to fatigue is ever unhelpful:
    It's also normal to feel consistently fatigued when you have a biomedical illness, and they aren't going to change the illness by ignoring symptoms of it:
    Put pressure on the parents to put pressure on the children. And it gives them someone else to blame when the quackery fails:
    I'm also not sure why CBT only talks about fatigue. It's completely ignoring the core symptom of PEM, as well as other autonomic, muscular, immune, and nervous system symptoms.

    A complete failure to understand or acknowledge the biomedical forces behind sleep disturbances, and a consequent recommendation to torture the child in yet another manner:
    Pain is presumed psychological, and it's mostly up to the patient to stop feeling it:
    This isn't true, unless you ignore actual diagnostic thresholds for depression or anxiety, or that the children have a disabling biomedical disease:
    Their patients say their subclinical depression or anxiety is reactionary, but that's no reason to believe them, apparently:
    No interest in finding out why the kids can't eat, let's just use it as another way to blame them and their families if they get sicker:
    More lies from Crawley:
    The usual plug for better/different CBT/GET, and now some recovery numbers which contradict the earlier ones:
    And finally, a plug for Action for ME. They need a motto, something like "The Fatigue Charity that 9 out of 10 quacks prefer!":
     
  7. Valentijn

    Valentijn The Diabolic Logic

    Messages:
    14,019
    Likes:
    43,195
    The lead author is Amberly Brigden, a quack in training under Crawley, which explains her complete ignorance about ME as a biomedical disease, as well as her faith in studies which are methodological junk. The other authors are all from Crawley's fatigue clinic, hence Brigden will likely be joining in their quackery soon as a professional. I'd feel sorry for her career being about to end before it even gets started, with the widespread debunking of their psychosocial nonsense, but I'd feel even sorrier for any patients she "treated".

    Aside from the authors, here's who to blame for this disgusting piece of crap that somehow got published:
    This is one of the worst pieces of psychobabble I've seen in a while, which certainly explains the paywall.

    But in addition to the usual quackery we're all familiar with, they're venturing into very dangerous territory with promoting "Activity Management" as a completely unregulated alternative to GET. No safety measures, no objective evaluations ... just have a go, and do the same things as GET. But since it's not called GET, they seem to think aren't being negligent by ignoring NICE's recommendations for GET.

    It's rebranding, because GET is a failure. But it's also an attempt to slide out from under the harm GET can do, and taking responsibility for it. Activity Management has no data showing effectiveness or safety, yet they act as if it's much safer than their supposedly already completely safe GET.
     
    merylg, Dolphin, halcyon and 22 others like this.
  8. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    4,566
    Likes:
    12,022
    South Australia
    Thoughts while reading this manuscript:
    citation needed.png
     
    snowathlete, anni66, merylg and 12 others like this.
  9. slysaint

    slysaint Senior Member

    Messages:
    1,976
    Likes:
    10,127
    W. Sussex UK
    Did I misread or are they referring to their 'treatment' as 'Specialist Medical Care'?:
    'Adolescents report that specialist medical care results in better symptom management.'

    Is this the same as the 'Specialist Medical Care' that was deemed ineffective by PACE in comparison to CBT/GET or is this just a shifting term used for whatever they are dishing out at the time?

    eta::confused: Crawleys specialist medical care IS CBT/GET:confused:
     
  10. Hutan

    Hutan Senior Member

    Messages:
    1,002
    Likes:
    5,494
    New Zealand
    :rofl:
    Perhaps now that this complex algebraic manipulation has been sorted
    i.e. (Wake uptime - allowed hours of sleep = Going-to-sleep time),
    the authors might like to explain how the 'clinicians' agree on the hours of sleep the young person is allowed.

    Where is the evidence that young people with ME do not need the length of sleep that their bodies are telling them to have?
     
    merylg, Dolphin, lemonworld and 12 others like this.
  11. A.B.

    A.B. Senior Member

    Messages:
    3,528
    Likes:
    21,373
    Depriving young people with ME/CFS of sleep is mistreatment.
     
    snowathlete, merylg, Dolphin and 13 others like this.
  12. lansbergen

    lansbergen Senior Member

    Messages:
    2,409
    Likes:
    2,396
    I say torture
     
    snowathlete, merylg, mango and 13 others like this.
  13. MEMum

    MEMum Senior Member

    Messages:
    367
    Likes:
    1,841
    Thanks @ Valentijn for having the stamina for an excellent highlighting of the obvious BS in this.
     
    merylg, Dolphin, ukxmrv and 13 others like this.
  14. TiredSam

    TiredSam The wise nematode hibernates

    Messages:
    2,518
    Likes:
    19,232
    Germany
    Practical management of chronic fatigue syndrome or myalgic encephalomyelitis in childhood
    1. Make sure your child gets all the rest they need.
    2. Stay the f. away from anything to do with Esther Crawley.
     
    snowathlete, merylg, mango and 23 others like this.
  15. Large Donner

    Large Donner Senior Member

    Messages:
    780
    Likes:
    3,300
    The same kind of mothers that go to psychic medium shows in the evening and cant see through the BS of the stage performer? Interesting how they use the phrase mothers without actually giving a percentage figure.

    So it could be one uninformed well meaning desperate mother out of a hundred until she wakes up and sees it for what it is but by then her kids are compromised and so is she under the powers of a state register at risk of her child being diagnosed with PRS.

    I just find such phrases so see through like the previous Esther Crawley "children want GET" to garner support for yet another GET trial. That's like saying children want cigarettes as justification for funding to test cigarettes out on children whilst parading the Marlboro man in front of them saying how cool and handsome he is.

    How anyone can pass this off as science and get funded is beyond me, its no better than the shopping channel.
     
    Last edited: Jul 1, 2017
  16. TiredSam

    TiredSam The wise nematode hibernates

    Messages:
    2,518
    Likes:
    19,232
    Germany
    According to the Wikepedia entry for Munchausen Syndrome by Proxy

    https://en.wikipedia.org/wiki/Munchausen_syndrome_by_proxy#cite_note-sheridan-10
    So it serves Esther Crawley well to concentrate on the mothers and ignore the fathers as insurance for the future when she'll be needing to find someone else to blame when her "management" fails.
     
    snowathlete, merylg, GreyOwl and 9 others like this.
  17. Revel

    Revel Senior Member

    Messages:
    384
    Likes:
    2,210
    Interesting view, @Large Donner.

    I saw the singling out of "mothers" as feeding into the image of the neurotic, overbearing female, whose very behaviour was potentially enabling the child's "false illness beliefs". Nothing would make such an individual happier than to be acknowledged (and therefore validated) by a "specialist". That was my take on their wording.

    Regardless, it made me uncomfortable - as if the whole of @Valentijn's excellent review of a BS paper wasn't unsettling enough . . .
     
    snowathlete, merylg, halcyon and 5 others like this.
  18. Demepivo

    Demepivo Dolores Abernathy

    Messages:
    262
    Likes:
    1,297
    Teenagers require more sleep than other age groups because of all the changes which take place before, during & after puberty.
     
    merylg, Dolphin, Jo Best and 6 others like this.
  19. NelliePledge

    NelliePledge plodder

    Messages:
    488
    Likes:
    2,080
    "diagnosis and referral is valued by families.........specialist service recognising and acknowledging the childs condition"

    exactly the same for adults if you are dealing with an employer or benefits you absolutely need a diagnosis - and having a referral to the hospital "specialist" service gives more weight to it.

    That is all. What the specialist service does with you is of minimal or no interest to them they just want the rubber stamp that it is a kosher illness, and that you are following whatever "treatment" the NHS is offering. I asked my GP for a referral despite having read the patient surveys purely to be seen to do the right thing and i was reasonably confident about not being pushed into exercise. it was a tick box exercise on my part to keep my employer on side with reduced hours and very long phased return. unfortunately the other participants on my course hadnt even heard of AFME let alone any other more enlightened organisations. And of course if I was a parent I wouldnt have put a young person into that position deliberately knowing what I knew.
     
  20. NelliePledge

    NelliePledge plodder

    Messages:
    488
    Likes:
    2,080
    ok so it is all a fudge but NICE guidelines do actually say that GET should use heart rate monitors, this is only mentioned as an afterthought in the paper

    Also I cant see anywhere that reflects as in NICE that GET is appropriate only for people with mild/moderate "CFS/ME".

    This woman is fudgier than a fudge factory
     

See more popular forum discussions.

Share This Page