Feature : Medical Research : Dangers of research into chronic fatigue syndrome Nigel Hawkes BMJ 2011 ; 342 : doi: 10.1136/bmj.d3780 (Published 22 June 2011 ) [ Extract ] [ Full text ] [ PDF ] Who are the real victims ? Linda Crowhurst , Very Severe ME patient Norfolk Because a few people are behaving inappropriately, it does not mean that the real physical needs of people with neurological ME are not a genuine issue. It does not mean there are not valid issues about PACE that are right to be raised. It does not make the findings of the PACE Trial any more valid for people with ME - and it certainly does not negate the ongoing biomedical neglect of patients, which is directly a result of the confusion that the psychiatric lobby has created , regarding the proper treatment of ME, a WHO-classified , serious neurological disease. Nor does it make right the implication that ME is a mental health condition requiring therapy as treatment. Peter White , the lead investigator o
Greg, you have such a kind and generous spirit. You do so much for Linda, she is trapped in a neverending struggle. I hope she can learn to relax her body somehow as this will allow oxygen to flow through and ease the build up of acid.
ReplyDeleteI hope you yourself get moments of peace and that someone is there to care for you too. You are both so strong, I wish you would allow yourselves to not fight for your cause day in, day out, and just give yourselves some time off as I'm sure it would benefit both of your health and wellbeing.
Bless you ! Thank you so much. Yes, what you say is true; our greatest longing is to not have to keep struggling like this but the injustice, the suffering is so immense. Sadly there is no escape, it has invaded every moment of our life together,our effort, most days, is spent on coping and survival.More than two decades have passed; the depths of agony, the wilderness of Very Severe ME, that Linda knows, defies description in its horror and complexity. I am determined to fight back with everything I have got.xx
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