Stonebird

(but notice the rainbow..)

I visited my elderly, widowed mother yesterday; for the first time in months. Carer poverty. My mum had to buy me coffee; I have no money. How I would have loved to have been able to purchase that red coat she was looking at. My Christmas presents this year, as every year , are paltry items, from second hand stalls and pound shops. Anything above £2.00 is a major purchase, a luxury. Carer poverty; the 20 something pence an hour that carers receive is a far bigger scandal that the Banker's bonus's . Yet that is what dominated the news yesterday : highly -paid bankers are holding the Government to ransom over their multi-billion pound bonus schemes . While those of us who care for society's most sick and disabled are expected to get by on about £7.00 a day; the lowest of all income replacement benefits. My Christmas "bonus" - yes they call it that, this year, will be £10. What if we carers threatened to withdraw our services too ? We who save the UK about £60 ...

Went to an important meeting the other day : my shoes barely holding together. Celebrated my birthday this week; the agony and pain in her eyes. Her level of disability increases daily. Her suffering, so awful, is relentless. We survive through love....and the faith that only grows in the poverty beyond the narrow reach of religion. .......It just gets harder and harder. .

I have just resigned from the Royal College of Nursing Special Interest Group on "CFS/ME". I found it to be shockingly entrenched in the psychosocial model, promoting, for example, study grants in "CBT" , publishing exemplar case studies on CGT and GET and refusing to even change the name of the CFS/ME group to "ME/CFS". It's been the most depressing experience. Anyway we fight back ! XMRV changes everything !!

Support for Severely Affected ME Sufferers Information for General Practitioners and Clinicians Greg Crowhurst (Updated Nov 2 2009) Introduction There is still much confusion and a lack of accurate knowledge about severe ME/CFS in the medical profession, leaving many patients “dismissed and abandoned without support.” Hooper et al (2005) . It is a matter of record that “the most severely affected are excluded from study in the UK.” (Hooper, Marshall & Williams 2006) Recent research by the 25% Group uncovers a shocking picture of severely ill ME/CFS sufferers being labelled as psychiatric patients, being treated with contempt by GP’s, doctors and nurses, being locked in secure units and shut in AIDS wards, being refused food and being made to participate in inappropriate graded exercise and behavioural therapy, designed to convince them there is nothing wrong with them. (Crowhurst 2005) What is ME/CFS? Variants of the term "M.E." were first used following a series of rep...

An Informal Guide to Part 3 of the DLA Form for Severe ME sufferers Greg Crowhurst 2009 For anyone with severe ME, the DLA application process can be an absolute nightmare, with some sufferers who are far too ill to even apply ; this is a terrible situation. Part 3 of the Form is particularly gruelling ; it is so long and it is difficult sometimes trying to tease out all the issues, for severe ME is such a complex , devastating and still misunderstood disease. Based on the principle : never be afraid to provide as much additional information as possible for the Assessors; here are some general suggestions , which might be of help. Remember you are free to add as many extra sheets to your application form as you like. For much more detailed assistance , Benefit and Work’s superb step-by-step guide to the whole DLA Form , is a fairly expensive but recommended investment : http://www.benefitsandwork.co.uk/content/category/11/17/43/ Part 3 Getting...

Cognitive Behaviour Therapy and Graded Exercise Therapy in ME : a boundary issue . Greg Crowhurst 29 October 2009 (may be reposted) "I could see the sense in graded exercise and how it could help someone to comeback from an illness and aid in their recovery but unfortunately with ME this treatment does not work and just sets you back. " ( Person with severe ME ) "Giving GET and CBT to people with ME is like trying to prescribe treatment without first investigating the disease – madness ! We need proper biomedical research to find out the cause(s) of this illness and to investigate fully what it does to the body.. GET and CBT have been found to be at best unhelpful to those with ME at worse, harmful." ( Person with severe ME ) " Having been a career in professional management, (before forced to give up work through ill health), as part of management development, I touched on CBT within the psychology of training so knew a little about its application/benef...