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Does anyone have experience of managing a family member's PIP as an appointee, and might be able to answer a quick question for me via private message (no personal info needed, just to avoid taking this thread off-topic)? I've tried looking online but all the available advice is either too vague...

I wonder what the missing word is in number 4.

Contains quite a few ungrounded assumptions ("A very simple formula that helps to predict the development of ME/CFS is disease severity times the time it takes until complete viral clearance"; "Individuals with CFS all have a similar phenotype. They have [...] a host of psychiatric symptoms...

Yes, to be a truly realistic service brief it has to acknowledge that there is a legacy of obstacles in the existing system, that these will take time to remove, and that patients need pathways to bypass them in the meantime.

There's an aspect of comfort and hope in feeling that perhaps the illness is caused by something you're doing wrong but that you could do better in future. Accepting that it simply isn't under your control whether you recover or not is scary. (Especially for this illness where so few...

but neurologists wedded to an unevidenced explanation of ME/CFS as psychogenic/"functional" should be avoided.

They have no evidence that the 'intergenerational transmission of somatic symptom tendencies' results from mothers' unhealthy 'behaviours' (rather than, perhaps, a genetic vulnerability to pain that more commonly affects people with two XX chromosomes and has been noticed to have a peak of onset...

Another study whose conclusions come into question since it now seems that inferring connectivity from BOLD signal isn't as straightforward as previously thought?

MS or Parkinson's might be better models/comparisons than MND.

For example, here are parts of what NHSInform says about motor neurone disease (I have a friend who has just been diagnosed with it, so I was looking at this recently). https://www.nhsinform.scot/illnesses-and-conditions/brain-nerves-and-spinal-cord/motor-neurone-disease-mnd

I wonder if it would be interesting to find examples of briefs for NHS services for other long-term disabling conditions, maybe to borrow ideas but also when it comes to presenting some kind of wish list to decision makers - to be able to say "look, this is the provision that people with other...

A "summary" that doesn't even get the writer's name right. About standard for "X" these days?

It's sad to read that she partly blames herself for the 'brain retraining' not working (she wonders if she was too resistant to it). She describes a lifetime of doubting herself and getting doubt and blame from others - after that it's understandable that she feels that she has failed the...

The semantics are a distraction from two inescapable facts: 1. Nobody should be wasting the resources of the healthcare system or of patients on interventions that have no evidence of efficacy, whether that's graded activity (as currently promoted by BACME) or crystal healing or ear seeds or...

Whether or not we accept the definition of rehabilitation as '90% of any healthcare activity', the important thing is that 'healthcare activity' shouldn't be ineffective or harmful, and that's the point of the open letter (which he hasn't got round to addressing).

The authors of the LISTEN trial said this about their work: Yet it's being used as the "evidence base" for this intervention they're promoting at this conference of the people running LC care. Imagine if informed professionals at the conference boycotted the session and instead went into...

Bridges self-management https://www.bridgesselfmanagement.org.uk/about/underpinning-theory/ The reference for 'one of our recent studies in people with long Covid' is this: https://www.bridgesselfmanagement.org.uk/research/research-projects/listen/ S4ME thread here. (We were underwhelmed.)...

I do wish that '200 symptoms' factoid would die. But journalists seem to love it.

The people in charge of local-level ME/CFS and Long Covid services need to see this.

"AI"-generated text that creates a superficial impression of authoritativeness based on nothing. Sick people deserve so much better than being patronised like this.