Journal of IiMER Volume 10 Issue 1 June 2016 It's a Funny Old World #thingsdoctorssaytopeoplewithME With a disease such as ME humour can sometimes help in balancing the absurdity of the patient’s situation with hope for a better way forward. When the establishment organisation responsible for using public funding to research diseases such as ME has failed consistently (influenced by vested interests), where the Department of Health and Chief Medical Officer avoid taking any responsibility for treating the disease with any serious action and where successive health ministers do not even register the disease on their worklist of important subjects – then what is left for a patient or his/her family to do? All of the above, of course, influences how many healthcare professionals still continue to view and treat the disease – sometimes showing an immense talent for ignorance and insensitivity that might be candidates for some record book, were it not for the negligence that it so clearly illustrates. Hopefully conferences such as IIMEC11 and the resulting DVD can dispel some of this ignorance and neglect – and increased knowledge and education are weapons that the patient community can use to counter this. But humour can help one deal with it. So here, thanks to Ali Head and Invest in ME (Charity Nr. 1114035) www.investinme.org Page 56 of 77 friends, are a selection of quotes from patients who have been on the receiving end of some awkward, some ridiculous, some incomprehensible and some just downright stupid observations from healthcare staff – and others. “well, I'm going to have to give you the CFS diagnosis. But no employer will want you.” “well if you don't follow your GET/CBT plan it means you want to keep yourself ill” GP: "ALL my patients complain of tiredness". - Exactly. Doctors & patients need diagnostics for this disease "there's no such thing as CFS" After neg bloodwork: "I've tested you for everything I can treat." - Infectious Disease Specialist “Oh dear you must be very tired...”

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