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Adolescent and parent factors related to fatigue in paediatric multiple sclerosis and CFS: A comparative study (2019) Carroll, Chalder, Moss-Morris

Discussion in 'PsychoSocial ME/CFS News' started by Esther12, Nov 19, 2018.

  1. Esther12

    Esther12 Senior Member (Voting Rights)

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    The abstract made it sound like another study that tries to confuse association and causation where their data didn't really support their narrative, but I stopped reading before getting to their results... too many infuriating unfounded claims to read before bed in just the intro. Funded by MS Society UK - what a great use of donations that was.

    https://www.ejpn-journal.com/article/S1090-3798(18)30016-3/pdf

    http://sci-hub.tw/https://doi.org/10.1016/j.ejpn.2018.10.006
     
  2. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    https://www.mssociety.org.uk/what-we-do/our-impact

    From their website:

    We play a leading role in research and we fight for better treatment and care. Our resources are precious. So we use them where we can make the most impact for everyone with MS.

    Well, they dropped the ball on that one then.
     
  3. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Perhaps ME charities should give MS society a call to explain what BS these people spout
     
  4. obeat

    obeat Senior Member (Voting Rights)

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    Surely it's normal behaviour for parents of sick children to be distressed ? It would be of interest if they weren't distressed. Note the children with CFS did not have cognitive impairment. Are they comparing with MS because the UK ME/CFS biobank is doing this.? Clearly wanting money for CBT/GET in caMS. It was the parents who had " unhelpful cognition" so presumably they will be the ones being offered CBT/GET.!
     
    Last edited: Nov 19, 2018
  5. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    From my dealings with the MS Society a couple of years ago , I did not find them very forthcoming at all. I wanted national/local data on MS, prevalence, numbers and extent and range of services offered (as against ME) for our inequality/equity argument MS-ME with the CCGs who hold the purse strings for local service provision.

    Plus, I understood that MS is a "disease"/ condition which mostly manifests in adults not children, unlike ME.
    So it would be good to establish evaluate this against MS prevalence in children?
    I don't think the MS Society does much more than support for patients and they do not seem to interrogate the science, even that commissioned by them.
    However, their NICE Guidance original document was fair and good, and much better than the ME one. https://www.nice.org.uk/guidance/co...onditions/multiple-sclerosis#panel-guidelines Since, there have been various TA's by NICE.
     
  6. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    This is interesting from the MS Guidance Document;

    Table 1 NHS Outcomes Framework 2015–16

    Domain


    Overarching indicators and improvement areas


    2 Enhancing quality of life for people with long‑term conditions


    Overarching indicator


    2 Health‑related quality of life for people with long‑term conditions**


    Improvement areas


    Ensuring people feel supported to manage their condition


    2.1 Proportion of people feeling supported to manage their condition (ASCOF 1A**)


    Improving functional ability in people with long‑term conditions


    2.2 Employment of people with long‑term conditions (ASCOF 1E** and PHOF 1.8*)


    Improving quality of life for people with multiple long‑term conditions


    2.7 Health‑related quality of life for people with three or more long‑term conditions (ASCOF 1A**)


    4 Ensuring that people have a positive experience of care


    Overarching indicator


    4a Patient experience of primary care


    i GP services


    4b Patient experience of hospital care


    4c Friends and family test


    4d Patient experience characterised as poor or worse


    i. Primary care


    ii. Hospital care


    Improvement areas


    Improving people's experience of outpatient care


    4.1 Patient experience of outpatient services


    Improving people's experience of integrated care


    4.9 People's experience of integrated care (ASCOF 3E**)


    Alignment with Adult Social Care Outcomes Framework and/or Public Health Outcomes Framework


    * Indicator is shared


    ** Indicator is complementary


    Table 2 The Adult Social Care Outcomes Framework 2015–16

    Domain


    Overarching and outcome measures


    1 Enhancing quality of life for people with care and support needs


    Overarching measure


    1A Social care‑related quality of life*


    Outcome measures


    People manage their own support as much as they wish, so they are in control of what, how and when support is delivered to match their needs


    1B Proportion of people who use services who have control over their daily life


    1D Carer‑reported quality of life


    3 Ensuring that people have a positive experience of care and support


    Overarching measure


    People who use social care and their carers are satisfied with their experience of care and support services


    3A Overall satisfaction of people who use services with their care and support


    3B Overall satisfaction of carers with social services of carers.


    Placeholder 3E: The effectiveness of integrated care*


    Outcome measures


    People know what choices are available to them locally, what they are entitled to, and who to contact when they need help


    3D The proportion of people who use services and carers who find it easy to find information about support


    Aligning with NHS Outcomes Framework and/or Public Health Outcomes Framework


    * Indicator complementary


    Table 3 Public Health Outcomes Framework for England, 2013–16

    Domain


    Objectives and indicators


    1 Improving the wider determinants of health


    Objective


    Improvements against wider factors that affect health and wellbeing and health inequalities


    Indicators


    1.8 Employment for those with long‑term health conditions including adults with a learning disability or who are in contact with secondary mental health services*


    1.9 Sickness absence rate


    2 Health improvement


    Objective


    People are helped to live healthy lifestyles, make healthy choices and reduce health inequalities


    Indicators


    2.13 Proportion of physically active and inactive adults


    2.23 Self-reported well‑being


    2.24 Injuries due to falls in people aged 65 and over


    Alignment with NHS Outcomes Framework and/or Adult Social Care Outcomes Framework


    * Indicator shared with the NHS Outcomes Framework


    Patient experience and safety issues

    Ensuring that care is safe and that people have a positive experience of care is vital in a high‑quality service. It is important to consider these factors when planning and delivering services relevant to MS.


    NICE has developed guidance and an associated quality standard on patient experience in adult NHS services (see the NICE pathway on patient experience in adult NHS services), which should be considered alongside this quality standard. They specify that people receiving care should be treated with dignity, have opportunities to discuss their preferences, and are supported to understand their options and make fully informed decisions. They also cover the provision of information to patients and service users. Quality statements on these aspects of patient experience are not usually included in topic‑specific quality standards. However, recommendations in the development sources for quality standards that affect patient experience and are specific to the topic are considered during quality statement development. Statement 1 covers the provision of information and the offer of support at the time of diagnosis. Statements 9, 12 and 14 from the NICE quality standard on patient experience in adult NHS services are particularly relevant to this topic, and relate to statements 3 and 5 in this quality standard.


    Coordinated services

    The quality standard for MS specifies that services should be commissioned from and coordinated across all relevant agencies encompassing the whole MS care pathway. A person‑centred, integrated approach to providing services is fundamental to delivering high‑quality care to adults with MS.


    The Health and Social Care Act 2012 sets out a clear expectation that the care system should consider NICE quality standards in planning and delivering services, as part of a general duty to secure continuous improvement in quality. Commissioners and providers of health and social care should refer to the library of NICE quality standards when designing high‑quality services. Other quality standards that should also be considered when choosing, commissioning or providing a high‑quality MS service are listed in related quality standards.


    Training and competencies

    The quality standard should be read in the context of national and local guidelines on training and competencies. All health, public health and social care practitioners involved in assessing, caring for and treating adults with MS should have sufficient and appropriate training and competencies to deliver the actions and interventions described in the quality standard. Quality statements on staff training and competency are not usually included in quality standards. However, recommendations in the development source(s) on specific types of training for the topic that exceed standard professional training are considered during quality statement development.


    Role of families and carers

    Quality standards recognise the important role families and carers have in supporting adults with MS. If appropriate, healthcare professionals and social care practitioners should ensure that family members and carers are involved in the decision‑making process about investigations, treatment and care.
     
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  7. Trish

    Trish Moderator Staff Member

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    I have only read the abstract, so this comment is limited by that.

    So they use their deeply flawed research on kids with ME and their parents, including their confusion of correlation and causation over parental roles in kids illness, to make equally flawed and erroneous conclusions about fatigue in kids with MS.

    I suppose the next stage will be to waste even more of the MS society's money on using their flawed treatments on families of kids with MS.

    Is there no end to these people's incompetence?

    I think it's all part of a wider strategy to keep their jobs and theories alive once the so called MUS conditions are shown to be biological illnesses. They can use their research on MS to say their treatments are still valid since they work for biological illnesses too.

    CBT takes over the world of medicine - first it was for psychological illnesses, then for MUS, now for everything...
     
  8. JemPD

    JemPD Senior Member (Voting Rights)

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    no doubt they were conned by this
    ---

    Oh yes? that'll be cognitions like 'my child is sick/disabled perhaps i should support him/her with compassion' would it? :rolleyes: :grumpy:
     
  9. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    https://www.mstrust.org.uk/a-z/childhood-ms
    Fewer than one in every 100 people with multiple sclerosis (MS) will experience symptoms before the age of 10 but between two and five in every 100 people experience their first symptoms before the age of 18. Not all of them will have been diagnosed at that age so they may have looked back and recognised certain symptoms as being an early part of their MS.

    Under the age of ten, equal numbers of boys and girls are diagnosed with MS. After puberty, more girls are affected than boys which mirrors what happens in the adult population. 98 out of every 100 children diagnosed with MS have the relapsing remitting type and may be offered disease modifying drugs to control the number and impact of relapses.

    Multiple sclerosis in children is exceptionally difficult to diagnose as there are other conditions in children which have very similar symptoms. This means that it can take some time to get a diagnosis which may be frustrating.

    NHS services for children with MS are provided in different ways in different areas of the UK. Your child may need to travel to specialist children's hospitals, which can be some distance away, for their appointments. Support is available for all the family though the MS healthcare team, GP and school or college.

    We will use the words “child”, “children” and “childhood” to cover both younger children and adolescents up to the age of 18. The medical term often used for childhood MS is paediatric MS or paediatric onset MS (POMS).

    The information on this page has been written with parents in mind.


    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5845207/
    Risk factors
    There is a possible role for Epstein-Barr virus (EBV) in MS pathogenesis.
    Natural history
    High-quality studies of the natural history of pediatric MS are scarce due to methodological issues.

    So guess where this is going,,, IAPT for chronic long term conditions or worse!
     
    Last edited: Nov 19, 2018
  10. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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  11. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    In paediatric Chronic Fatigue Syndrome (CFS), effective psychological interventions have been developed based on psychosocial factors associated with fatigue. This study aimed to identify potentially modifiable factors of fatigue in caMS by comparing caMS, adolescents with CFS, healthy adolescents and their parents on measures of fatigue, psychosocial factors, and neurocognitive functioning.


    Yes it’s a house of sand. The CFS “success” supposedly making it worthwhile to try the same in MS. Even if they were having success in CFS why they assume the fatiguE In MS can be erased without getting rid of the MS , through modifying behaviour baffles me, and it seems they have to look at parents to find something to focus on. They clearly think mood , beliefs and behaviour response in illness are big influences of fatigue whereas I see it as so minor to not be worth money spent on. It’s because fatigue isn’t researched much or understood. Unless a child has got into a pattern of excessive rest and avoidance , which will then be helped by CBT and exercise I doubt a tired child needs encouragement to do more.
     
  12. Cinders66

    Cinders66 Senior Member (Voting Rights)

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  13. Sean

    Sean Senior Member (Voting Rights)

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    Frauds.
     
  14. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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  15. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    [PDF]
    Template for notes - Royal College of Nursing

    https://www.rcn.org.uk/-/media/royal...of.../children.../ukccypn-9th-feb-2016.pdf

    9 Feb 2016 - Wendy Nicholson, Public Health England. Theresa ... Denise Evans, Chair of the Neonatal Nurses Association ... Anne Wilson, Action for Sick Children Scotland. Dr Hilary Cass, Health Education England Children's Lead.

    https://en.wikipedia.org/wiki/Hilary_Cass

    Early life
    She was educated at the City of London School for Girls.[1] She studied at the Royal Free hospital medical school, graduating with a degree in medicine.[1]

    From 1994 to 2009 she was a consultant in paediatric disability at Great Ormond Street Hospital (GOSH).[1] She left after raising concerns about patient safety at the hospital.[3]
     
    Last edited: Nov 20, 2018
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  16. Amw66

    Amw66 Senior Member (Voting Rights)

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    The neurocognitive functioning being classed as normal in the CFS comparison sticks out ( until you perhaps realise that this is probably children with chronic fatigue), and this is a big issue, particularity with published papers being reviewed by NICE.

    I do not know of any parents of kids with ME who have not commented on the effects of brain fog - for some it may only be apparent during PEM.

    I have not read the full paper yet but will over the next couple of days. I have a feeling questionnaires may feature significantly?

    ( Sorry, my cynicism is getting the better of me)
     
  17. obeat

    obeat Senior Member (Voting Rights)

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    One of the projects will study the use of chocolate in preventing fatigue, and another will look at resistance exercise training. Don't hold out much hope for either. Time for MS patients to become militant!!!
     
  18. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Yes it doesn't sit with what we know, especially when kids home schooled can struggle with just doing an hours study per day and that must go beyond concentration. In adults i thought on average more with ME were cognitively affected and more so. Im basing this on some research from an MS charity which i will try to find later.
     
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  19. rvallee

    rvallee Senior Member (Voting Rights)

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    That indeed strongly implies cherry-picking participants. It's as big a tell as having participants in a paraplegia trial that commonly run marathons. Or as was the case with one weird comment from the PACE trial notes that participants were reasonably active. If they were reasonably active, than they are by definition cheating by way of selecting participants that will confirm their bias.

    Fraud. It's all fraud. They're all frauds.
     
  20. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    Most of the studies on neurocognitive functioning in adolescents with CFS tend to be quite severely biased towards substantially higher than average IQ and less severe functioning. These studies also tended to not test the fatigubility, that is to say the decline in performance - some used just a few short tests, justified with the reasoning that they didn't want the study to be a burden on participants.

    The fact is that the sensation of fatigue is about predicting future performance, the ability to maintain performance (as per the exercise tests for example - reduction in performance on the second day) - in my case, tests (uni exams for example) resulted in a substantial reduction in peformance, concentration etc after an hour. Most studies do not try to replicate such a thing at all.
     

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