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Self-Management of Chronic Fatigue Syndrome in Adolescents, 2020, Katherine Rowe et al

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by Dolphin, Mar 3, 2020.

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  1. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Free full text:
    https://www.intechopen.com/online-first/self-management-of-chronic-fatigue-syndrome-in-adolescents

     
    Dolphin, Mar 3, 2020
    #1
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  2. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I've not read the whole thing -

    For the newly ill, you're still very much in a learning curve (adults at least). So things may temporarily seem to be improving but may not be sustainable. So you might find certain prioritization perfectly acceptable in the short term but as that rolls into years it may no longer feasible or acceptable.

    We think there is a possibility that some youngsters will pretty much spontaneously recover. Those individuals might inflate the success rate of this intervention.

    A year in the time frame of ME is nothing. Of young people who do recover there is anecdotal evidence that some relapse later in life. Possibly late 20s or early 30s. It would be of some benefit to monitor patients in the long term.

    We can't discount the possibility that in the ambition to return to "normal" life we might be condemning some people to long terms and severe disability in later life. Again long term monitoring would provide some useful information.
     
    Invisible Woman, Mar 3, 2020
    #2
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  3. Hutan

    Hutan Moderator Staff Member

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    This is an interesting read from a sympathetic clinician who has worked with young people with ME for many years.


    It's good to see this acknowledged:

    The clinic started in 1989.
    My son attended the clinic in 2014 - this was still the case in Melbourne at that time. I'd be surprised if attitudes in the medical profession have changed materially since then.

    Nice also to see the acknowledgement that ME/CFS isn't just a cultural construct:
    The 'requirements' of the management plan (with social, academic and physical components) are fairly pragmatic:
    Re the academic component:
     
    Hutan, Mar 3, 2020
    #3
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  4. Hutan

    Hutan Moderator Staff Member

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    I want to note that I hadn't read the whole paper when I posted above. I have concerns about the rehabilitation program discussed in the second half of the paper with seems to involve CBT and exercise and was started in 2012. It seems to me that the selection of participants and the demanding nature of the program results in young people who are recovering being the ones who do the program. Given my experience with my daughter and her recovery, I suspect that most of the participants would have improved regardless.

    From the paper it sounds as though the program was most useful for young people who were recovering and needed some help to negotiate a return to the education system.

    My son wasn't offered the rehabilitation program, which was described to us as a residential program, as it was felt that he was coping well. He was given a prescription for melatonin and Ritalin and told to come back in 4 months. A letter for the school that he planned to attend the following year was provided, which was useful. My son decided it was all a waste of time and chose not to return to the service which was called the 'Fatigue Clinic' and was located in the mental health part of the Royal Childrens Hospital.
     
    Hutan, Mar 3, 2020
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  5. ladycatlover

    ladycatlover Senior Member (Voting Rights)

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    Why prescribe Ritalin? I don't know much about it, but it seems like not a good match for ME? Don't feel you have to discuss this if you'd prefer not to @Hutan.
     
    ladycatlover, Mar 3, 2020
    #5
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  6. Hutan

    Hutan Moderator Staff Member

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    Oh, don't get me started LCL. :)
    I think the thinking is - you're fatigued, so you need a stimulant. I'm not sure it's much better thinking than that.

    My son does not and did not have symptoms of ADHD; Ritalin just seemed to be a standard thing that was handed out. I was appalled that it was prescribed along with a followup appointment in 4 months' time. 4 months, during which time my son was planning to change from homeschooled to full-time school... (needless to say, that didn't end well).

    But anyway, my son tried the ritalin and decided he preferred coffee. I'm aware of the KPAX trial of ritalin and vitamins that had a null result.
     
    Hutan, Mar 3, 2020
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  7. ladycatlover

    ladycatlover Senior Member (Voting Rights)

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    Thanks @Hutan for your reply. I've never really "got" why Ritalin was a good idea for kids with ADHD - seems a bit counter intuitive. But what do I know! (Nothing, just to be really clear)
     
    ladycatlover, Mar 3, 2020
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  8. Milo

    Milo Senior Member (Voting Rights)

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    This is a rehab, CBT, GET program. i wonder what happens with the children that cannot keep up with this regimen and who cannot achieve the goals despite doing all they can to reach them? Are they ostracized and are they punished by removing access to care and services?
     
    Last edited: Mar 4, 2020
    Milo, Mar 4, 2020
    #8
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  9. Mithriel

    Mithriel Senior Member (Voting Rights)

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    ADD is caused by the "brake" part of the brain being underactive. Stimulating that part slows things down enough that attention can be better controlled.

    There is no doubt that that ADHD is overdiagnosed. There is too much attention paid to the hyperactivity component; like us and fatigue hyperactivity has different causes and many people have attention deficit without traditional hyperactivity.

    We were told my son could not have ADD because he could watch a TV programme, but ADD is a twofold disease in that not only does attention bounce about but when it is caught it can be hard to shift it again.

    So the situation is like ME. Because the emphasis is on the wrong symptom people without the disease are said to have it and treated inappropriately while people who do have it are neglected by medicine because it is diagnosed wrongly. Got that of my chest :)

    In ME, the feeling of fatigue may well be protective so anything that reduces it could lead to bad harm. Just think of a child who thinks they can attend school because of the medication but the disease is still there so they end up bed bound for years. Prescribing ritalin is a horrendous risk and show how ignorant so many medics are about the history and reality of ME.
     
    Mithriel, Mar 4, 2020
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  10. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I met an adult who was prescribed speed. It didn't end very well.
     
    Invisible Woman, Mar 4, 2020
    #10
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