The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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How is it to be an adolescent living with chronic fatigue syndrome/myalgic encephalomyelitis?

Discussion in 'Latest ME/CFS Research' started by deleder2k, Jan 7, 2017.

  1. deleder2k

    deleder2k Senior Member

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    How is it to be an adolescent living with chronic fatigue syndrome/myalgic encephalomyelitis? A narrative review:

    Background: Chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME) is a disabling condition posing a major health problem for a subset of adolescents in Norway and other industrialized countries. What it is like to live with CFS/ME in adolescents is poorly understood and has not been thoroughly explored.
    Objective: The purpose of this narrative review is to provide an overview of CFS/ME as a serious health condition in adolescents. Aspects covered include condition duration, disability level, treatment, diagnostics, and disease mechanisms. The review is also aimed at highlighting the adolescents’ own experiences of living with the disorder. Methods: The databases PubMed, MEDLINE, and Google Scholar were searched from 1990 to 2015 using the reported search terms. In addition, reference lists of relevant articles from the search were screened for additional relevant articles.
    Discussion: Studies show that CFS/ME in adolescents usually lasts three years, the disability is severe, and treatment options are limited. There is disagreement on diagnostic criteria and disease mechanisms. However, evidence suggests that the condition may be explained by a sustained arousal response that is triggered by infections and/or critical life events interacting with predisposing factors and learning.

    Qualitative interviews suggest that adolescents with CFS/ME feel as if their life is put on hold. This core theme was supported by six subthemes:
    (1) Adolescents with CFS/ME feel locked in their homes and shut out;
    (2) Not being able to attend school seems to make afflicted individuals worry about missing school work; (3) Many feel different from the person they used to be;
    (4) Many struggle to be recognized as ill; Despite these challenges, some patients appear to (5) envision a better future and
    (6) experience personal growth.

    Conclusion:
    In conclusion, CFS/ME is a serious disorder with detrimental impact on functioning and emotional well-being. Living with CFS/ME is filled with difficult emotions and thoughts that might be equally, or even more, painful than the physical pain. This was the first review of what it is like for adolescents to live with the disorder. The results underscore the importance of listening to their stories to provide them with more effective help. Finally, the patients are in need of both better assessment and treatment.

    How is it to be an adolescent living with chronic fatigue syndrome/myalgic encephalomyelitis? A narrative review]. Scandinavian Psychologist, 4, e1. https://doi.org/10.15714/scandpsychol.4.e1

    Not sure if the article is available or not. This is a link to google translate of the article: https://translate.google.com/translate?hl=no&sl=no&tl=en&u=https://psykologisk.no/sp/2017/01/e1/

    The author has also been interviewed about the article in Norwegian: https://translate.google.com/translate?sl=no&tl=en&js=y&prev=_t&hl=no&ie=UTF-8&u=https://psykologisk.no/2017/01/me-syk-ungdom-foler-at-livet-blir-satt-pa-pause/view-all/&edit-text=


    One highlight from the review: "Contrary to what some patients seem to believe, there is no evidence that activity is detrimental."

    In the interview she says: "Adolescents with ME often get (or develop*) anxiety, and they have a 10 times higher chance of developing depression compared to the normal population.
     
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  2. Valentijn

    Valentijn WE ARE KINA

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    "A narrative review" = "Whatever BS I feel like concocting to support my beliefs."
     
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  3. Joh

    Joh Inactivist

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    No words.:bang-head:
     
  4. CCC

    CCC Senior Member

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    Speaking as the mother of an adolescent, I can say that only point 2 is way off the mark (for my adolescent, anyway - there are so many alternative pathways these days). The worst part is watching him lose all his friends. The best part (inasmuch as this can have anything good) would be point 6 - it's common for many kids with a severe illness to mature. My bloke seems to be quietly optimistic in a pragmatic kinda way, and pain isn't really a problem for him. He has also not had problems with people believing him.

    But then, this is total rubbish:
     
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  5. Cheesus

    Cheesus Senior Member

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    To my knowledge no one claims activity is detrimental. Has anyone here ever claimed that activity is detrimental? I don't believe I have, and I can't recall seeing anyone else do so either.

    It is exertion that is detrimental, which is why we call it post exertional malaise, not activity.
     
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  6. CCC

    CCC Senior Member

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    Fair enough, but any activity = exertion for my son. Christmas Day left him bedroom bound for a week.

    Because of our experience, it had never occurred to me that there is a difference between activity and exertion. Maybe someone can explain it to me.
     
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  7. Cheesus

    Cheesus Senior Member

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    Sorry, I realise that was a little snarky and it wasn't levelled at you - you just happened to be the person I quoted.

    I am probably actually worse than your son. I haven't been able to walk more than a few steps for 2 years. At Christmas my family had to pile into my room and sit around my bed to open presents. I understand that degree of severity.

    The distinction I am drawing is that people with ME are generally fine as long as the activity they carry out occurs inside whatever limits are given by the severity of their disease. I can engage in activity perfectly well without any repercussions. I am typing this message right now and I doubt I will have any fallout from it.

    Exertion comes when a patient crosses the threshold imposed by their disease. At that point, any further activity will cause symptoms.

    The case that the author is making appears to be that patients believe any activity will make them sick, but that is not the case. The belief held by patients is that crossing over that energy barrier will make them sick. Moreover the author seems to mistake a lack of evidence for evidence against. The reality is that the PEM aspect of the disease is so obvious as to be axiomatic. It is like saying no one has done a study that confirms people with Parkinson's Disease have tremors, therefore we shouldn't believe that these people necessarily have tremors.

    Again, I did not really mean to contradict what you said and I apologise if it came over as rude.
     
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  8. CCC

    CCC Senior Member

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    No problems.

    I think it is just that I had defined activity in the way you define exertion, on the basis that you can't exert yourself without activity. Allowing for that definitional issue, I think we are in furious agreement.

    And, you are also right - you are sicker than my son. He can easily walk around the house most days, and we went to the grandparents for Christmas Day, but he also has all his needs catered for. I'm not sure he'd manage if he had to look after himself at all.
     
  9. Cheesus

    Cheesus Senior Member

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    Furious agreement :D I like it!

    I think the misunderstanding arises in that you can't exert yourself without activity, but you can engage in activity without exerting yourself. I think perhaps my initial comment was being pernickety, and in hindsight I probably would have kept my mouth shut :p

    There is no doubt in my mind that your son is very significantly affected by this horrendous disease. I am reassured that adolescents typically have a better prognosis than adults, so I really hope he can improve.
     
  10. Joh

    Joh Inactivist

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    From the interview with the author:
    And she repeats that our faulty emotions and thoughts make us sick:
     
    Last edited: Jan 8, 2017
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  11. RogerBlack

    RogerBlack Senior Member

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    Unfortunately, it's not.

    For various reasons, it's never been documented in a convincing manner.

    Starting out with the dilution of study populations by using Oxford criteria or similar, going through excluding the housebound and severely affected on through it being questionably ethical to even do a study on worsening.
    And then ending up at lack or reporting of adverse events. How many of these trials follow up people who've left.
     
  12. Snow Leopard

    Snow Leopard Hibernating

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    Yes.

    As someone who became ill as an adolescent, it is clear she has not spent much if any time empathetically listening to adolescents with ME. It's like saying, hey, I know all about humans, I've read about them in popular books! (Despite never meeting one.)

    The article in general looks like she plagiarised the writing of certain psychiatrists, simply translated into Norwegian.

    Trotting out the same hypotheses without specific demonstrable/objective evidence.

    Tu Quoque.


    She is dismissing the biological evidence, claiming there is evidence for psychological causality, despite the fact that the psychological evidence has all the drawbacks of the many biological findings, namely lack of specificity, sensitivity and a comprehensive model of how it is all connected together.

    To a hammer everything looks like a nail. If you are a psychologist/psychiatrists, you look through the psych lens. If you are a sociologist you look through a social lens, if you are a biologist you look through a biological lens.

    There is no bio-psycho-social model. It'd be great if there was one. But that would require much more work.

    Is it not a coincidence that those who repeatedly mention a BPS view, never bother to actually build and test models in a robust way? Instead they trot out how we need to take a BPS view and then focus entirely on the Psych aspects, persistently ignoring the Bio and Social aspects (unless it allows them to redirect attention to their favoured Psych hypothesis).
     
    Last edited: Jan 8, 2017
  13. A.B.

    A.B. Senior Member

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    Sounds like another "expert" that is really good at hearing only those things patients say that fit into a biopsychosocial explanation.
     
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  14. lemonworld

    lemonworld

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    As someone who got ME in their adolecence, the feelings about the illness she describes from the interviews (loneliness, worry about missing school, identity etc) was true for me. Though I think that can’t be surprising. These are surely normal reactions from becoming severly ill at a young age, not being belived or taken proper care of by healthy system, school system or even family, not getting understaning anywhere, seeing your body failing more and more and being expected to just pull yourself together, on top grieving the life you have lost. Of course these things cause a lot of emotional pain in adolecence.

    I know my mental and emotional well being was far from being taken care of in my teens, and if articles and work like this can help give a better understanding of what these kids go through, and help them being taken better care of that’s great!

    However, more apparent than the commentary about the natural emotional response and feelings around being ill, I see a lot of harmful claims in her piece. Here are some, translated by me (apologies for any mistakes/poor language):

    Cognitive behavioral therapy and graded exercise therapy are the only forms of treatment that has documented effect in multiple randomized controlled trials.

    Even though research litterature speaks for CBT, the treatment is debated, and there is disagreement. For example, The Norwegian ME-association (Norges ME-forening) are very sceptical to CBT as they believe the condition must be understood as a biomedical illness and should be treated as such. The association also base their view on a servey where 1 out of 4 young and adult patients say they experienced worsening after CBT. The participants in this servey are, however, proably not representative: the ME-association recruted the participants through their own facebook-page. It’s possible that some of the recruted participatns share the associations biomedical understandig and therefore will be sceptical to psychological approaches.

    (she talks about how personality traits of perfectionism gives increased risk of developing CFS/ME)

    Infection is often the cause of the first feeling of fatigue in CFS/ME. Gradually the feeling of fatigue can be associated to neutral stimuli through classical conditioning - a form of learning. That means that repeated experience of fatigue in different situations, like at home, at school, with friends, can contribute to teach the brain to associate the feeling of fatigue with these situations. And so the experience of fatigue can almost automatically be activated or amplified in those situations.
    ___

    I could go on and on...

    She's often refering to Wyller as a source, which I recognize as one of the very harmful voices of ME/CFS opinions in Norway.

    I'm so tired of this. Do we just have to wait for the good research to silence them? I'm sure their harmful voices are gradually going to get quieter as the research advances.

    Would there be any point in writing an email to her? I understand that it might not amout to much, but I think I'd feel better at least, that I did something. Though she seems to be aware of the arguments against GET and CBT; she argues against the research done at Haukeland; mistrusts the experience told by patients in the ME-association. I don't know if it's possible to change her view then?

    For some reason this piece hit me harder than usual.
     
    Last edited: Jan 10, 2017
  15. Snow Leopard

    Snow Leopard Hibernating

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  16. A.B.

    A.B. Senior Member

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    There are also cases without a precipitating event, where symptoms begin and simply never end. There is no time to become deconditioned or for classical conditioning (which doesn't make any sense because activities that were previously unproblematic becime unsustainable).

    Not to mention that the idea that thinking of and expecting fatigue is suficient to cause disability is completely insane.
     
  17. deleder2k

    deleder2k Senior Member

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    "Adolescents with ME often get (or develop*) anxiety, and they have a 10 times higher chance of developing depression compared to the normal population."

    And what is the chance of developing depression for any long-term chronic illness? Is it interesting to compare PWME to healthy people without comparing them to other patients that are just as sick? This smells bad "science" all the way. I remember that I've read several studies that say that PWME are in fact less depressed and is in a better state of mind compared to patients that are chronically with other diseases.
     
    Last edited: Jan 8, 2017
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  18. ash0787

    ash0787 Senior Member

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    maybe someone can propose a biopsychosocial model of why these things all sound the same and are useless ?
    perhaps its because they are fake scientists that did their thesis about how the film Twilight causes anorexia or something like that.
     
  19. A.B.

    A.B. Senior Member

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    Because the underlying idea of somatization and secondary gain is wrong. Concepts made up by Freud who snorted so much cocaine he had to have his nose opened surgically. Too much cocaine can lead to loss of sense of reality and erodes one's sense of ethics. Addicts are only concerned about getting their next dose, no matter how. Freud certainly made a nice career making up a treatment and promoting it as cure for everything medicine didn't understand. Medicine has fallen so hard for Freud they're still trying to prove his ideas right. Even after psychanalysis has fallen in disrepute. The biopsychosocial model was invented by a psychanalyst and seems to be nothing more than a way for them to continue trying to heal disease at a mental level.
     
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  20. Webdog

    Webdog Nothing left to say

    As a former adolescent with ME/CFS, I can say that probably the worst part was being misdiagnosed and told it was all in my head.

    Although I'm not suicidal, I can honestly say that I wish I had carried out my suicide plans as a teen.

    Living 4 decades with this hell disease with no clue as to how to manage symptoms and no one, not family/doctors/teachers/friends/employers/government believing me has not been worth it.
     

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