Please take a minute to read A Radical Care Pathway for ME/CFS by Nancy Blake on NHS Managers Network.
When I saw this today, it brought a tear to me eye. I wish this way of thinking had been around when I became ill. The advice that the display of ME symptoms following a viral illness should be treated as a medical emergency and that patients should receive treatment and further testing at home rather than being expected to visit hospitals, physiotherapists etc is so completely logical.
The article discusses the initial need for complete rest followed by a gradual and supported return to activity, beautifully attacks the patient-blame culture which has risen up around M.E. and also (thank you, thank you so much!) contradicts the mistaken belief that the only way to recover from an illness is to ‘fight’ against it. I hope it’s ok to quote the article here, because I really want to share the last paragraph with you…
The current psychiatric model has no way of acknowledging treatment failure – failure can always be blamed on the patient. No wonder there is so much hostility. It is time to step across the divide, accept that patients are telling the truth, and start giving them a chance to get better.
The next sensible step would be for whoever happens to be running the shambles that is our benefits systems to accept that people with M.E. need financial support, especially when they first become ill, because forcing a seriously unwell M.E. patient to entirely support themselves regardless of their inability to do so makes recovery at best unrealistic and at worst impossible (I speak from experience).
There is so far still to go. SO FAR. But articles like this give me hope. They help me to feel like maybe things might have started moving in the right direction, finally.