Showing posts from December, 2014

21st Christmas

...fragile hurting, without clear direction, 21 years in the wasteland,  following the star, that is how we enter into Christmas. Hoping for a good moment to open the presents, knowing it is not likely,  that the rip of torn paper will cause instant deterioration,  that thoughtless, foolish perfumed gifts will be a toxic bomb, that the shaking,  the paralysis will overshadow the numb hands, so desperate to be held, so unable to bear contact. Ours is the poverty of the outcast, the refugee, the broken and for all of that-  the star of Bethlehem shines the brighter.

Not lazy bastards : nurses need educating in Myalgic Encephalomyelitis

( Published  in the    ME Global Chronicle December 2014 ) Nurses are not being educated in Myalgic Encephalomyelitis (ME), making it difficult for them to recognise the mistreatment of ME and also making it unsafe for patients with ME to be exposed to a hospital/ medical environment. A 2009 study (Chew-Graham et al ), for example, found little evidence that Nurses are being taught about ME. One person stated that: “ people probably just look at them and think, oh you know he's just tired all the time: lazy...lazy bastards and wasting doctor's time.'” A study of the literature reveals an alarming lack of awareness of the seriousness of the disease. Without the appropriate understanding of the pathology of the disease and the specific individual system dysfunction, patients are put at risk of mistreatment and misinterpretation. Affecting more people than AIDS, lung cancer and breast cancer combined, more people than have multiple sclerosis or cystic fibros

Essential reading from Florence Nightingale

I have just been reading "Notes on Nursing", it contains extraordinary relevant insights for anyone who cares for someone with Severe ME, take this for example  : "I think it is a very common error among the well to think that "with a little more self-control" the sick might, if they chose, "dismiss painful thoughts" which "aggravate their disease,"  Believe me, almost  any  sick person, who behaves decently well, exercises more self-control every moment of his day than you will ever know till you are sick yourself. Almost every step that crosses his room is painful to him; almost every thought that crosses his brain is painful to him: and if he can speak without being savage, and look without being unpleasant, he is exercising self-control." What a challenge to those who believe that the person has just got to somehow pull themselves together ! Such ignorance. The courage it takes my wife, Linda, just to get through each moment o

Who are the villains here ?

There is a post on CoCure today from Oslo, accusing critics of a  moral transgression through their "unfair blackening of an effective treatment (cognitive behavioral therapy)."  The authors argue that if "you really care about the patients , one should help everyone get this treatment". It is very disturbing, this growing tendency to portray people with ME as the villains and researchers as the victims. Well, here are 101 Good Reasons to be critical :