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This patient leaflet is dated 2020 - I don't think it is at variance with the current job description: pdf = https://doclibrary-rcht.cornwall.nhs.uk/DocumentsLibrary/RoyalCornwallHospitalsTrust/PatientInformation/ChronicFatigueSyndromeCFSME/RCHT1861SpecialistOccupationalTherapyInCFSMEService.pdf...

A most telling quote: "This is disappointing as there had been some hope for an easy solution" * I think that quote is revealing of the enthusiasm for this kind of intervention at the political level. Easy = cheap, and that is a defining attitude to children and young people in the UK...

It could be bigotry but can also be explained by institutional inertia - no one is in place to make a principled decision for change, so the system just keeps pushing out the same product. That may be a result of poor management, but it is often a symptom of an overstressed system that is...

How the hell do you evaluate a 3 year old for FND ? Or perhaps more importantly "why would anyone think of doing such a thing ?". And 21 is now the upper bound for paediatrics ?

It's a bit odd how Tommy Parker is described as CEO of Ki Active(R) when there is no company registered under that title - https://www.weahsn.net/2020/10/meet-the-innovator-tommyparker-kiactiv/ and https://kiactiv.com/ Ki Active seemingly is only an internet construct - ownership of the...

NSF Science of Science Proposal: Randomized Trial of Registered Reports, MetaArXiv Preprints, 2022, Brian Nosek et al. Center for Open Science NSF Science of Science: Discovery, Communication, and Impact (SoS.DCI) Randomized Trial of Registered Reports - Project Summary Overview. The...

The doc actually says at section 8. summary box: https://www.england.nhs.uk/coronavirus/documents/long-covid-the-nhs-plan-for-2021-22/#equity "Building on the invaluable input to date of patient advocacy groups, six Patient and Public Voice Partners have been appointed to work with the Long...

I'm sure this is an important document, though without actual resources to back it up, the overwhelmed under funded Welsh NHS will be unlikely to respond meaningfully. However I baulk at the use of partial statistics to make a point. The report says: "which shows that...

That is exactly right. To quote from the UK Parliament website: "All-Party Parliamentary Groups (APPGs) are informal cross-party groups that have no official status within Parliament. They are run by and for Members of the Commons and Lords, though many choose to involve individuals and...

At some point in advance of the next election, or within the campaign should the election be imminent, we would need a concerted campaign to get all Parties onside - it's an opportunity for grass roots activism - issues previously discussed here...

For anyone not familiar with what is going on in the UK, the change in Secretary of Health & Social Care (SoHSC) is part of a wider crisis in the UK Government which is leading to major instability both within the administration itself and in the ruling Conservative Party as a whole. How this...

It is a long established Government target to increase the amount of 'contracted out' NHS services and the whole thing has been bureaucratised to make it a standard part of how the NHS operates - Private companies’ involvement in the NHS . With over £2bn (2015 !) in health contracts going to...

Statpearls is a private US based company. As far as I can see the business model is selling the Statspearls materials via its corporate access https://www.statpearls.com/home/groupsales/ which is then sold on as courses via the Statspearls website. The institutional base seems to be mostly if...

OK so this poster presentation is based (sort of) on the paper discussed here: https://www.s4me.info/threads/is-it-time-to-act-qualitative-study-of-acceptability-feasibility-of-acceptance-and-commitment-therapy-for-adolescents-with-cfs-2021-crawley-et-al.20297/ which was published just before...

It really is brazen - I assumed there must be at least some NICE recommendation of "fatigue" that specified Activity Management, Graded Exercise Therapy or Cognitive Behavioural Therapy - yet as you say there is absolutely nothing, except in the Clinical Knowledge Summaries Tiredness/fatigue...

My comments in bold Aims Paediatric chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) effects 0.5–3.28% of children. (poster presentation so no need to reference a claim that up 400k UK under 18s could have ME/CFS - and really can't they proof read out effects/affects ?) NICE...

Certainly there should be no unwarranted or at least no unacknowledged assumptions - we know so little about ME/CFS that would be foolish. But if all experiences are to be acknowledged we have to use precise language to avoid conflating one idiom, label or experience with another. Currently we...

That is to confuse two separate things. I would guess that most PwME experience some kind of exhaustion, need to rest etc, soon after exertion and that effect may take some time to resolve, but that is not what has been consistently described as Post Exertional Malaise. PEM by definition is a...

Single reference to deconditioning is the 2005 Clark & White paper "The role of deconditioning and therapeutic exercise in chronic fatigue syndrome (CFS)" Sci Hub full paper: https://sci-hub.se/10.1080/09638230500136308

They repeat the canard of representing "Three clinicians resigned from the NICE guideline committee before publication" as though the three were disassociated from the final publication, which they certainly were not. The duplicity of this is clearly conscious because they avoid making their...