TEXT TO 70070 "ISMR99 £10" (or £1-5)
Crowdfunding, eBay, Grow for Dough, ME Bed Peace, Scary Bear, running (not me), percentage of book sales (Karen Morris amazon: Reiki Healing, Meditation, Little Angels), etc.
#MyE #MEcfs We need: -
1. Global biomedical research (Invest in ME Research).
2. Patients to give feedback to watchdogs (keep a copy).
3. Official collection of patient statistics in the UK.
4. Full exclusion tests for new and long-term patients, to ensure that there are no undiagnosed conditions.
5. NICE guidelines to be updated to match WHO.
6. Education of GPs, Drs, graduates e.g. ME is not tiredness, but debilitating fatigue with other symptoms like post-extertional malaise and frequent prolonged infections (see Canadian Consensus).
7. Remove the term CFS which is confusing and adds to the stigma.
8. Proper regulation, accountability and transparency of health and care industries:
NHS, NHS complaints system, watchdogs, DWP + assessors, and the Third Sector (Charity Commission reported as 'performing poorly' and 'not fit for purpose' for many years).
My own views, I am separate to Invest in ME. Unable to respond to messages due to health.
Karen Morris x