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Key Features of a Multi-Disciplinary Hospital-Based Rehabilitation Program for Children and Adolescents with Moderate to Severe ME/CFS 2022, Hiremath

Discussion in 'ME/CFS research' started by Sly Saint, Oct 20, 2022.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Key Features of a Multi-Disciplinary Hospital-Based Rehabilitation Program for Children and Adolescents with Moderate to Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS

    other authors include
    Anna Gregorowski (BACME)

    Hiremath, S.; Doukrou, M.; Flannery, H.; Carey, C.; Gregorowski, A.; Ward, J.; Hargreaves, D ; Segal, T

    Abstract

    Purpose of the study: There is limited published data on treatment or outcomes of children and young people (CYP) with moderate or severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Here, we describe outcomes of moderate and severe ME/CFS in CYP treated in a tertiary adolescent service. This information is useful when planning services for CYP and families affected by moderate/severe ME/CFS and to guide future management trials and commissioning decisions.

    Study Design: A retrospective review was conducted of medical records of the 27 CYP who received ward-based treatment in 2015. Notes were retrospectively reviewed to assess progress in four markers of wellbeing over the period of treatment: (i) mobility, (ii) education, (iii) sleep and (iv) involvement in social/recreational activities.

    Results: A total of 23/27 (85%) showed improvement in one or more domains over their period of ward-based therapy. 19/27 (70%) of patients showed improvement in physical ability. In 15/23 patients (65%), there was an improvement in ability to access education, in 12/24 (50%) sleep improved, and 16/27 (59%) demonstrated an improvement in socialising/ability perform recreational activities.

    Conclusion/Implications: A multidisciplinary hospital-based rehabilitation programme for moderate and severe ME/CFS was associated with improvement in at least one area of wellbeing in 85% of the CYP we reviewed. These data may be used as a baseline to evaluate the impact of other models of delivering care for this patient group. It may be useful when considering other groups such as those affected by Post-COVID Syndrome.

    https://www.mdpi.com/1660-4601/19/20/13608

     
    Last edited: Oct 25, 2022
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  2. RedFox

    RedFox Senior Member (Voting Rights)

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    So, the patients here showed significant improvement, including in objective outcomes like school attendance. However, there was no control group, and we know that pediatric ME is more likely to improve than adult-onset ME. Also, their description of the treatment is incredibly vague. It's essentially described as providing access to lots of specialists, but without details on the approaches or treatments employed. They don't say whether they actually followed the NICE guidelines, but they're at least aware of it. They make a few ambiguously pro-BPS statements as well, making it even more confusing. Hence, I doubt this study could meaningfully inform clinical practice, or even be replicated.

    I honestly don't know what to make of this study. They're taking many pages to say, "A bunch of kids went to doctors and then felt better," which is not incredibly surprising. I think they might be trying to advocate in favor of providing supportive care according to the NICE guideline, but they make a weak argument.
     
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  3. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    so NICE recommended treatment for 'moderate' patients at that time would have been CBT/GET.
     
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  4. RedFox

    RedFox Senior Member (Voting Rights)

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    I'm lacking spoons for a meaningful correction, but that definitely invalidates parts of my previous comment.
     
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  5. bobbler

    bobbler Senior Member (Voting Rights)

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    Shocking so far to the point I'd edit it as:
    Study Design: A Selectivespective review

    So approx 415 patients to choose 27 from? And that is with criteria that explicitly excludes the poor souls that got stuck under the service for 8years.

    5% of their patients by their own admission - apparently chosen by criteria that didn't just happen to also make the figures work. Can we assume 95% wouldn't have made the figures work of those who went through their doors?

    The punchline is that even with their terms being 'to perform' etc, and whatever selection criteria:

    8 showed improvement in 'all 4 areas'. 415 patients seen that year. 2%.


    Not much reporting on all the rest re: 'overall condition' worse or better for it vs being left alone etc - unless they could be added in as a 'sort of improvement' e.g. 15 of the 23 (65%) CYP who were not in full-time education showed improvement - so that isn't reporting on 27. And what happened to the other 12?

    Sorry but these sorts of things feel like collateral damage of the majority could happen and the report expects a pat on the back for the few who it might have worked for - somewhat (do we know how much and how long and why?)
     
    Last edited: Oct 21, 2022
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  6. bobbler

    bobbler Senior Member (Voting Rights)

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    And they only cared for/noted improvement on one variable to be an improvement

    FOr those of us who got forced into work or school or to improve e.g. 'do more exercise' the normal upshot is 'holistically' (as they seem to like tht word) your illness getting worse. So why are they allowed to do this based on 1?

    I note the term "in ability to perform x, y, z," which sounds bang on to the situation - just depends if you want to take the non-actor under pressure meaning of the word when you read that I guess. The mind games involved with the questionnaire wording, and what these kids might have been put through is very hard to separate from the results here too on that basis.
     
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  7. bobbler

    bobbler Senior Member (Voting Rights)

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    And that is before you get into the territory of some people only being there for 10months and maybe thinking 'what do I need to say to get out of here' due to the power difference, and what we know about certain 'treatments' being more harmful than non-treatment.

    Very feasible if it was self-reported that these numbers are more descriptive of what people felt they had to say in order to keep themselves safe given what we know about the implications of these services and the power/influence they have over very important things in these people's lives.

    'say your sleep is better for not going to school otherwise they mightn't write that letter we need' type thing or 'if you say that you are getting worse they are just going to increase the amount they are involved' etc.

    I don't think these non-independent (and given the sector I don't think conflicted by being in the same area/business/BACME etc is OK as they will all know each other and have the same wishes) pieces of research should be allowed to take place anymore for this reason. It's like prison guards/whoever will give parole etc being allowed to submit research stating how useful prisoners found their stay/help etc. These people aren't 'out of the system' that they are interviewing. It is very inappropriate I think. Particularly given what only those who say 'I'm not reading it' don't know about re: harms and culture for historical CFS treatment.
     
  8. rvallee

    rvallee Senior Member (Voting Rights)

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    "They enter the clinic a sick child, and they leave the clinic no longer a child, because they're basically adults and by then they're just discharged" is one interesting strategy. A median of 2.5 years. WTF? Look at the median age of referral:
    That's about 2.5 years away from 18. Exactly, actually.

    I was trying to figure out how 400+ become 27 and it seems to be:
    That out of 400+ patients, only 27 received treatment at this unit. What of the nearly 400 other patients? ¯\_(ツ)_/¯

    By their own admission they got 100+ new patients that year, and yet only treated 27 this same year.

    In a functioning healthcare system, or any system at all, there is no way anything this mediocrity keeps getting funded. This is disastrous even with the absolute lowest standards imaginable.
     
  9. Trish

    Trish Moderator Staff Member

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    I would assume that means only 27 had treatment as inpatients. The rest would be treated as outpatients.
     
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  10. bobbler

    bobbler Senior Member (Voting Rights)

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    Good point. The following paper which seems to be the same unit: https://adc.bmj.com/content/104/Suppl_2/A242.1

    has a similar mean age (15.3 in this case):
    "We retrospectively collected data about 118 patients aged 11–19 referred between April 2012-April 2014 who were followed up for two years or more. "

    "Regarding outcomes, 39.1% of patients recovered (defined as discharged due to recovery or increasing school attendance by >25% at 6 months), 16.5% were discharged due to non-attendance and the remainder were transferred to adult CFS/ME and other services."

    That's a pretty big disparity. 39% 'recovered' vs now 85% for the 27 they've selected for the above paper.

    I'm suspicious of this not being made clear. I can't be sure that either of these is actually the case looking at what the methods says:

    So who they excluded (those getting only outpatient) is clear, but it doesn't mean necessarily by the way it is worded that they included all who met the Nice criteria? And they only had to be admitted for a day or more, so does that count as those who were outpatient but with one day 'in' at the start?

    Some questions to answer here. Because describing their service as "nationally recognised service manages young people up to 19 years who are living with ME/CFS, chronic pain and persistent physical symptoms", even using the old Nice criteria for CFS/ME (they still call it that on their website then use CFS on its own) 27 doesn't equal 415.

    Does being an inpatient for one night (it seems feasible they might have had that at the start or middle of an outpatient programme for many/most) count as not being exclusively outpatient?


    I've found the following paper by similar authors which is from 2019 (near enough) looking at the same service and describing its characteristics (which include numbers): https://adc.bmj.com/content/104/Suppl_2/A242.1

    Similar questions on their wording - inferring that it is 'absolute' whilst not saying it is e.g
    "We retrospectively collected data about 118 patients aged 11–19 referred between April 2012-April 2014 who were followed up for two years or more. Patients seen but not diagnosed with CFS/ME were excluded. Notes were reviewed and relevant data collected. The data were analysed to produce descriptive statistics."

    Just because they collected data about 118, doesn't mean 118 was all their patients?

    "Most patients were female (67%) with an average age of 15.3 years." Makes me think this is similar given the 15.5years above.

    "60% of patients were moderately or severely affected." Which could mean something if it is representative of their ward or intake, or nothing if it's just those they collected data on.


    This paper from 2018, same unit: https://www.researchgate.net/public...nic_fatigue_syndromemyalgic_encephalomyelitis

    "This project describes the demographic of adolescents with CFS/ME being treated at a specialist service and their mood, quality of life and symptom impact."

    "69 adolescents, (10.4–18.0 years), were assessed at their initial clinic appointment using a three-part questionnaire."
     
    Last edited: Oct 21, 2022
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  11. bobbler

    bobbler Senior Member (Voting Rights)

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    And the following typo at the end in the data availability statement is foxing:

    "Data Availability Statement
    Data provided in this study is not publicly available as due to small numbers in the study, patients may be identifyable"

    Great peer review system then - confident those checking this felt about to speak out in suggested amends

    Particularly eccentric given it is directly below the following where it was spelt correctly:
    "Informed Consent Statement
    Patient consent was waived due to no patients being identifiable."


    And on that note then so patient consent was waived which I assume given it was looking at their notes - notes obtained whilst they were all stuck under this service with all the various threats that go with that should one pull out etc.

    What really is this measuring other than what patients will say to those running a service, who hold that power when they would reasonably perceive saying 'the wrong thing' could be them at threat of something they have to avoid at all costs?

    It makes me really angry that the literature thinks research like this should be published or undertaken given the power issue should make it null and void surely?

    At this point this type of 'research' insight brings up an issue even bigger than trial design


    EDIT*: on the being able to waive patient consent due to no patient being identifiable. I know that HESA would count 5 as a minimum dataset for anonymity/identifiability. I guess this is why they've mixed up the age groups so much/across such a broad range rather than broken it down?

    Open question: Is there an argument for the graphs, of things like returning to school, potentially being an identifiable variable given we are talking very small numbers? e.g. If you knew the person who went from being full time at school to no school in that graph you'd know what number they were on the other graphs. This isn't a trial, but a clinic someone necessarily attended for a long time which I think also changes things somewhat re: this?
     
    Last edited: Oct 21, 2022
  12. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    There isn't much in the report except for "we run a specialist service and patients get better with our care." Not much info on what they are doing, no validated outcome measures, no control group etc.
     
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  13. bobbler

    bobbler Senior Member (Voting Rights)

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    I wouldn't assume anything. UNless they decided on a proper design before they began picking around in the figures or sending out surveys etc then it's the usual 'post-hoc' defining groups to find an effect.

    I'm not convinced from their wording it was all of any category otherwise the methods would be very clear, as most of these papers (even Chalder's ones) tends to be about which 'criteria tey selected' and how that filtered down and why to the end number. We just know how many they picked, what they weren't and what they were. I don't think failing to say the exact wording that would be expected is ever any accident in these when 'the norm' would have increased the weight should it have been true. Someone's pen faltered there for a reason.
     
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  14. dave30th

    dave30th Senior Member (Voting Rights)

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  15. alex3619

    alex3619 Senior Member (Voting Rights)

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    PACE and other studies claimed all sorts of improvements and recovery, yet long term follow up shows the real outcome in PACE - zilch.
     
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  16. bobbler

    bobbler Senior Member (Voting Rights)

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    indeed, and when you think about kids it is even more vital to have controls who have rest and pacing given the potential for recovery that is apparently cited so much. Firstly - is that true, given the researchers in the area and what we know about them. Secondly if it is and based on prior research from biomedics using very different paradigms and treatments then...

    It's inhumane if such 'treatment' is even hindering what might be a better recovery ie claiming '5% improvement means treatment works when actually vs controls allowed to rest getting 90% recovery in 3 years they'd have wrecked lives'.

    There is also the point of what people will have given up in this age group. 'attending education' is quite different to being helped by the unit to achieve the best their potential allowed within the limitations of their disability. You can have genii who have moderate/severe who could still get the odd good grade if done in the right way for the disease. I sense these guys aren;t that disability positive to this, unless it is 'done the normal way' given their focus on attendance vs other issues of education - maybe I'm wrong.

    As a side note, given what we know about how things tend not to get better as you go on once you are an adult, and how if someone ends up in this situation at that point in life they are missing the key exams and university etc then whether those 3 years out meant they recovered (which if they rested they might have had the best chance of) or didn't as well as they could have could be a major difference between so many life opportunities.

    I find it shocking an adolescent unit - or indeed the MEA if what they say about 13-15 being a key time when ME happens - isn't focusing on not just this area, but back-on-track new type of life/career/family plans and support things. There should be some very good research that says it is worth taking 1 step back to take 2 steps forward or not. And given education no longer seems as open to different part time options and picking things up later then there also needs to be things looking into this.

    But are they just shipping them out when they hit 18yrs as if they did their job? Get ill from 15-18 and unless you make your illness worse by pushing through that's it?
     
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  17. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  18. Trish

    Trish Moderator Staff Member

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    Mental health :(:banghead:
     
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