Journal of IiME Volume 1 Issue 1 (continued on page 25) 7. ME Story I believe the consent process was unethical. I was not aware what I was letting myself in for. (they did not explain the details of the intervention until after I had consented). In addition, the deconditioning theory was presented as fact and there was no mention of a balanced viewpoint (I have since read research that goes against this deconditioning theory). 8. Another example of my data not being represented properly: I suspended from University a couple of weeks before the start of the program and had started to improve from the rest. I continued to improve for a little while into the program. I made sure I highlighted that the cause of this improvement could be the effects of the program, or the rest I was getting. They were not interested in this - the fact that there was basically another aspect of my life that could be causing changes in my condition. I was unhappy during the study but wanted to continue because I thought (stupidly) that in some small way I was helping the fight against ME. It is in realising that my data will probably be used in some way to support this program - that I feel made me so much worse - that makes me want to withdraw. Blimey, I have written all this and still don't feel like I've painted the picture. The doctor put me forward for this trial because this was all he knew of to do. I so wish I had done my research first. I will be so much more cautious in the future. It frightens me to think that this research will be used to support clinics offering this in the future. Anyway, I hope that is of help to someone. I can provide more information if anyone is interested. Thanks for your replies and I hope this is a good day for you. Alice x ME Story Despite strenuous efforts on my part ME Story Even if it had been the right treatment, by that time it was too late: so many years of neglect, disbelief, wrong medication, wrong diagnoses; so many times referred to psychiatrists, who to a man sent her away because they couldn’t find anything wrong – with a prescription for an anti-depressant just in case....... - Richard to keep well and fulfil my duties to the best of my capabilities, I suffered a complete collapse in September, 2003 and was almost bed-bound for many months. I have been unable to work full-time since then and even very small, parttime jobs cause the flu-symptoms, severe headaches, blackouts, loss of balance, nausea, weak limbs, IBS, brain-fog and exhaustion to start up again. I'm one of the lucky ones…. - Daphne Invest in ME Charity Nr 1114035 www.investinme.org How do I deal with family that say things like "stop researching that...don't you think your just wallowing in it just the more?" How do you stop looking for answers? When is it time to give up? Why don't people that have known you all their lives...know you and what your suffering is REAL?? Why do doctors still say this doesn't exist and yet look at many of us ...completely destroyed by this disease....... - Cynthia 26 ME Story When I try to get medical care, the strain of trying to convince someone I am ill and the hurtful things they say to me practically make me crack up. Just the physical demands of leaving the house, even in the wheelchair, are enough to make me sicker for weeks. I can't describe how ill it makes me feel - Shannon
27 Publizr Home