united kingdom

Woman, 28, goes from keen runner to year in dark room because of severe disorder Jonathan admits he has seen his beloved fiancée’s character slowly slip away without any real support from the NHS in Wales. “The only things offered by the doctor were antidepressants, which made Natalie’s ME...

Interesting link from Twitter -

From Recovery in the Bin full article here https://www.theguardian.com/commentisfree/2019/may/14/mental-health-services-crisis-patients-vulnerable-off-rolled?CMP=Share_iOSApp_Other

Open access at https://www.tandfonline.com/doi/full/10.1080/02699052.2019.1607557 The authors claim they are looking at post-concussion syndrome yet So when they report that from this list of symptoms I expect that they are re-labelling people who have an assortment of conditions...

[see thread (with petition) re-amalgamation of testing for both benefits] https://www.s4me.info/threads/dont-merge-the-assessments-for-pip-and-esa-april-2019.9032/ full debate here: https://www.theyworkforyou.com/whall/?id=2019-04-24a.318.4&s=Myalgic+Encephalomyelitis#g324.0

Warning - this may be a programme that is upsetting for PIP claimants, or those awaiting a PIP assessment. On the other hand, it at least shows you how useless the assessors are. But that's really scary, since then you know how little chance to have to get PIP unless you're ready to go through...

UK Gov petition (ie at 10,000 Govt will respond) currently 3567 signatures (my addition: if you fail on the one test but were previously in receipt of both benefits, you would effectively be left with nothing, pending appeal.) link here: https://petition.parliament.uk/petitions/244329

https://www.rcplondon.ac.uk/ngc-guideline-development

not very well written (a couple of half-quotes that don't make much sense). Also, although it initially says a 'crippling rare illness', at the end it gives the 250,000 UK and 17m figure worldwide........'rare'?? there is also an instant poll to identify if readers are ME sufferers/know...

A few minutes ago, Carol Monaghan asked a question in the House about children ( with ME) being removed from loving families . I didn’t get the whole of her question - sound was off and I had to quickly turn it up- but Prime Minister answered something to the effect that she wasn’t aware of...

BBC just reporting Brine has resigned.

Becky Hatfield is trying to get a bagful of letters together for Steve Brine (think he is still Under Secretary of State for Department of Health and Social Care.....things are changing so rapidly in UK Govt). There has been a disappointing response to her Twitter and Facebook requests. so I am...

http://askforevidence.org/articles/ask-for-evidence-ambassador-launch

https://www.lawsociety.org.uk/news/press-releases/vulnerable-people-at-great-risk-under-new-laws/

https://www.theregister.co.uk/2019/02/19/dwp_health_data_tool/ Also a blog on the subject https://universalcreditsuffer.com/2019/02/26/dwp-designing-tool-to-trawl-claimants-medical-records/

As increasingly pw ME/CFS are being referred through IAPT for treatment as MUS I thought I'd set up a separate thread from the ME/CFS Services in UK. " Medically Unexplained Symptoms: Primary Care Intervention University of Sheffield Subject Experts Professor Peter White is Professor of...

Ugh. Have you seen this new piece @dave30th ? "Conclusions mFND patients have distinct demographic characteristics compared with psychiatric controls. Experiences of abuse appear to be equally prevalent across psychiatric patient groups. This study establishes the socio-demographic and life...

http://myriadproject.org/myriad-project/ http://myriadproject.org/ The MYRIAD collaboration: Kings College London, University of Oxford, University of Exeter, MRC; Cognition and Brain sciences unit, University of Cambridge, UCL, Wellcome. see also: Mindfulness Training in UK Secondary Schools...

https://bjgp.org/content/68/677/579

I had not heard of this 'charity' before. https://acmedsci.ac.uk/ Unfortunately Simon Wessely is also connected and frequently takes part in their events. But, just maybe there are people who might be able to give a really 'independent' objective review of PACE and related issues? eg...