Stonebird

How inspiring is this - the outright refusal of Danish patients to be labelled  as having a functional disorder !!  http://www.information.dk/492004 I published an  analysis of Functional Disorders earlier this year :  http://www.stonebird.co.uk/bds.pdf

Five Myths that every ME Campaigner  needs to be aware of. Greg Crowhurst If you seek to campaign for ME you should be very aware of the five myths that underpin official UK policy : Myth 1  : CFS and ME are the same.  CFS and ME are different terms encompassing different  conditions and symptoms, with different sets of treatment requirements. ME and CFS need to be separated  in order to respect the differences.  The  Grace Charity  reveals how according to the National Archive Document BN141/1 the Government was ready to make M.E. separate from other chronic fatigue syndromes by classifying M.E. as neurological in the DLA Handbook (Disability Living Allowance). But just as it seemed ready to do this, it did  a U-turn and keep M.E. under the general heading chronic fatigue syndromes,.http://www.thegracecharityforme.org/documents.asp Currently the generalised psychosocial treatment pathway for all is  failing people with ME. ME must be treated as a  separate condition

Everything has gone into the creation of this website : twenty non-stop years of suffering, the suffocating oppression we all face, the hanging onto hope, against all the odds, the immense fight for justice that we cannot afford to walk away from : stretched to every possible limit and beyond, it is there you encounter the Heart of Love.

 When the pain is too much, when the person is screaming because they cannot bear it, you as the carer may have little to offer, apart from your presence, for the medical neglect is almost total in Severe ME.  This is a place of  overwhelming poverty, inexpressible heartache, profound anger; it tears you apart.

The untold struggles the carer goes through can  easily be overlooked.  I have decided to publish extracts from my journal to give more insight into the challenges, on every level, that you face trying to care for  someone with Severe ME.