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  1. ProudActivist

    Rogue company Unum’s profiteering hand in the government’s work, health and disability green paper (2016) (ME mentioned)

    Wow this is a good article. Very long but I think i absorbed the main points. I find the direction of travel devastating. State welfare and GP surgeries merging roles- it’s already happening. The job centre has a room upstairs at our surgery, for public convenience, you understand... We can...
  2. ProudActivist

    UK Parliament debate - 10 Years of the Work Capability Assesment 24 April 2019

    Yes but people die because of austerity etc and the government is potentially (I add for legal reasons) culpable.
  3. ProudActivist

    The ‘cognitive behavioural model’ of chronic fatigue syndrome: Critique of a flawed model, 2019, Geraghty et al

    I read it this morning. I found it an uplifting experience and feel that it makes some very strong statements and backs them up well. I think it’s very hard not to read this and see the gaping flaws in the BPS paradigm and it also manages to have a dig at the illogical MUS diagnosis without...
  4. ProudActivist

    Claim (PACE) ME/CFS cured by changing mind on way out HealthInsightUK Blog post by Jerome Burne (2019)

    I don’t think being unduly positive is helpful. We have good reason to expect the worst, after the last time. However I think they have been pushed a bit further into a corner this time with much more public critiques of the status quo. I am hoping for improvements but expect there will still be...
  5. ProudActivist

    Defining the prevalence and symptom burden of those with self-reported severe CFS/ME: a ... community pilot study... (2017) Strassheim et al

    Also the food category is strange. Needs food chopping to no problem with feeding is a leap. Are they assuming all people with stroke are men with wives who cook for them?! I suspect this kind of thing is what the DWP base their criteria on. Has the same feel of a blunt assessment tool...
  6. ProudActivist

    Defining the prevalence and symptom burden of those with self-reported severe CFS/ME: a ... community pilot study... (2017) Strassheim et al

    I had a look through and scored as you described (0-2) and seem to score 14! I am far from independent. Very crude measure and not capturing any subtlety caused by symptoms or taking undue exertion into account. Yes I bath on my own (not nearly often enough) and go to the toilet on my own and...
  7. ProudActivist

    Recliner chairs

    I wonder where all the old dentist chairs go?!
  8. ProudActivist

    Defining the prevalence and symptom burden of those with self-reported severe CFS/ME: a ... community pilot study... (2017) Strassheim et al

    Trish I like your charitable interpretation above! I don’t think that’s what they do mean though. I think they may well have a “benign desire” to help us, but they are not “looking properly” or engaging with the politics and history. It’s such a waste of time and resources when they mean well...
  9. ProudActivist

    Recliner chairs

    I agree about trying them in the shop though it’s very hard for many of us to do. It’s amazing how many chairs etc are so very uncomfortable!!! I have a stressless chair and couldn’t sleep in that, for some of the reasons stated above. It is a good change of scene but it doesn’t go back enough...
  10. ProudActivist

    The face of postural tachycardia syndrome – insights from a large cross‐sectional online community‐based survey, 2019, Raj et al

    Yes, badly worded, that! Quite an assumption and no regard to possible limits of research method used.
  11. ProudActivist

    Defining the prevalence and symptom burden of those with self-reported severe CFS/ME: a ... community pilot study... (2017) Strassheim et al

    Yes I found this very strange. I think 6 gave another explanation for their symptoms (maybe they had being diagnosed as having CFS and that’s why they were captured?) and six had barely any symptoms at all, which is quite strange. I was glad the researchers didn’t speculate about why these...
  12. ProudActivist

    Defining the prevalence and symptom burden of those with self-reported severe CFS/ME: a ... community pilot study... (2017) Strassheim et al

    I just read this study (a bit late!). I filled in the (massive) questionnaires for phase one, so met one of the researchers. She seemed great. I am pretty confused generally about papers like this, and why they seem pretty ok all the way through then switch on the BPS speak at the end. She...
  13. ProudActivist

    Results of a survey of 151 families with ME on their experiences of the NHS

    This blogger is doing important work, obviously under difficult circumstances. It’s shocking but not surprising to see these results.
  14. ProudActivist

    Orthostatic intolerance

    Which cardiologist? I know someone who has an appointment in Vancouver coming up about this.
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