by Greg Crowhurst:
No one, in seventeen years of almost total isolation, has had the wit, the intelligence or the courage to try and include us in their conferences.
Typically the international ME biomedical conference circuit, revolves around the same skimpy smattering of medical professionals. Given that no one, to my knowledge, is researching the most severely affected, that , alongside the lack of any significant patient/carer involvement on the circuit, is a whopping void.
Has it occurred to anyone that we carers and patients might have something of stupendous value to share ; a few facts about how to live with and cope with this abominable illness, not just survive but actually make things happen ?
That we comprehend better than any number of medical professionals , who do not visit the homes of those who have very severe ME, what the sickness is actually like and what works and what doesn't? Read more>>