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Is August 2021 ‘late 2021’?

Is it worth considering what the Bristol/Bath group’s position on recovery following intervention in the Bath clinic? I may be misremembering but hasn’t Prof Crawley previously claimed a 95% success rate in treating paediatric ME/CFS? But in this paper she says “around a third do not recover...

Here are the references for the Physiotherapy and Occupational Therapy FND consensus papers mentioned by Perez: Nielsen G, Stone J, Matthews A, et al. Physiotherapy for functional motor disorders: a consensus recommendation. J Neurol Neurosurg Psychiatry 2015;86:1113–9. (link...

Do we know if the Bristol academics and Bath NHS clinicians who co-wrote this paper with LP trainers/staff/Phil Parker have every attended or participated in any LP course/sessions?

Also as mentioned elsewhere in relation to the reproducibility of research, because of commercial secrecy it is impossible for any independent verification to ever take place. But over and above this, it means that any academic, doctor or clinician recommending LP has no objective information or...

I now have a pdf of the full article, but assume that sharing it here would be a breach of copyright. Hope to read it tomorrow, but anyone wanting to know more message me.

Note, I see that Dr David Perez has written an editorial comment for this article, see https://jnnp.bmj.com/content/early/2021/06/30/jnnp-2021-327213.full but the full text of this is also behind the paywall. As are the references for the ‘convergent’ consensus recommendations for...

As an undergraduate in experimental psychology and as a research student in acquired language disorders, then in my SLT training and in nearly twenty years of being a practicing Speech & Language Therapist, largely working with acquired neurological conditions, I had not come across any...

Such a shame that there don’t seem to be many/any prospective studies. Certainly in the UK now is the time for such studies as the delta variant seems to have been given free reign in relation to children and young adults.

@MeSci, I think it is useful to share Lyme’s disease info here, because of potential misdiagnosis of Lyme’s as ME and ME as Lyme’s, because of the overlap in symptoms raising the possibility of similar or related disease processes, because it is not impossible for some individuals to have both...

Thank you, @Parsnip, for putting in all the hard work and under taking the emotional challenge to share this account. It will take me a couple of days to read it all, but this is such an important topic. The LP is worryingly successful at PR, and it is the con treatment that most people hear...

Is there any way there could be an interim warning of there being evidence of harm for some participants in GET and CBT aimed at treating/curing the underlying ME/CFS? We singularly failed to achieve this in relation the NICE guidelines for ME/CFS during their rewriting process here in the UK...

Interestingly, though Crawley in Bristol/Bath seems to be switching to research involving children with ongoing problems following their intervention, reported as successful with 95% of patients (if I remember the figures correctly), Chalder in London still seems to have enough patients to...

Is this frantic press of ever poorer quality BPS papers a desperate attempt to overwhelm service commissioners before the publication of the final NICE guidelines, even though they must know it is too late to influence the guidelines themselves; is it part of their bid to colonise Long Covid; or...

Struggling with my memory this afternoon, but since the delay to the publication of the guidelines, haven’t White and others made claims that they had adequately addressed the PEM and GET harms issues in the unpublished data from PACE? (Can’t remember my source, but it must be either the Lancet...

I may be being unfair, but both in relation to FND and to MUS, I have seen articles where PACE is cited as conclusive evidence for the effectiveness of psychological and behavioural interventions and then assumed that this can be generalised to all FND and MUS patients without any evidenced...

Easily done

My heart sank as soon as I saw the phrase ‘sunflower therapy for children’. Can we not ensure ethics panels just automatically deny approval for any research containing an overly twee arbitrary name or a silly acronym? The lives of so many people would be so much better if this had been the...

[added - in summary my understanding is Franklin is proposing an actual BPS model of ME involving all three components, where currently restricted activity undermines our sense of self worth which in turn limits what we are able to achieve, this should be managed by an activity programme...

This point suggests we have two sources of bias in the self reporting, one where the intervention is successful in its attempt to change the participant’s world views (or for the cynic, brain wash them) and one where it encourages them to lie to conceal their personal failure to benefit from a...