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Consultation on draft report to the NHMRC CEO for ‘Myalgic Encephalomyelitis / Chronic Fatigue Syndrome’ submission

Personal Details
First Name: 
Last Name: 
Specific Questions
1a. How well does the report present the difficulties faced by ME/CFS patients in receiving clinical care?: 
Very Poorly
This report does not even begin to address the unbelievable difficulty people, and specifically women, have in trying to get medical help for their ME/CFS conditions. I am a private individual. I have no medical expertise. But several of my closest friends are wonderful women who suffer wretchedly, day in and day out, with this thing blighting their lives. There is a huge, extremely specific need for doctors who understand the facts of the condition, who understand the off-the-charts degrees of constant pain involved, to make house-calls. Because frequently these patients can't get to GP clinics on their own, or when they need to. Then there is the matter of understanding the condition itself. There is a prevailing notion, especially among government health bureaucrats (and in this consultation document), that the so-called PACE study, with its prescription of “graded exercise” and the psychological method of CBT is an effective treatment for ME/CFS. Every single one of my several friends with this condition (at least seven women) have been loud and colourful in telling me about this PACE study and their violent denunciation of it for years now. If they had the energy they would march on Parliament. They absolutely reject this study and it’s findings. Because they all know, from their own experience, that sometimes there is no level of exertion that works. Sometimes they can maybe have a shower. But sometimes just lying in bed is it for the day. They tell me these things, and I believe them. They are not faking. They are in such unbearable pain I worry they will take their lives. But then, if they did, I would forgive them. Because you would. Thank you. Please help.

Page reviewed: 23 September, 2019