In this post Jodi writes about the failure of some national organisations to act in the interests of people with ME. The same is true in the UK; AfME have been following their own agendas leaving those with ME feeling even more neglected. The MEA is not a lot better, but there have been some signs that it's moving in the right direction. *Permission to repost* Jodi Bassett Recently, a fairly inaccurate article on the illness titled 'Cruelty of Chronic Fatigue' appeared in (the Australian) The Herald Sun. http://blogs.news.com.au/heraldsun/robynriley/index.php/heraldsun/comments/cruelty_of_chronic_fatigue/ In the blog section at the end of the article, comments could be sent in both in criticism and praise of the article. Although, admirably, many of the criticisms sent in were posted (albeit some with further criticism from the author added at the end), a discussion between people with oppposing views developed. (Incidentally, what a surprise, many of those making the most ignorant comments and supporting some of the worst myths about the illness were those affiliated with our state 'CFS/ME' societies! With 'advocates' like these....!) A few posters had their say about the comments about one person in particular, someone who referred to themselves as 'B' but for whatever reason, this person's rebuttals were not posted. I offered to make the posts public myself and 'B' happily gave me permission to do so, and so they are reproduced below. (In particular, the ridiculous comment that B would have liked the article much more and found it more positive had she/he only been able to see the pretty pictures in the printed version of the article, absolutely NEEDED to be responded to!) Jodi Bassett ----- From B of Australia: I feel the need to respond to those who have commented on my initial post. To Robyn Riley: It is the quality rather than the quantity of your research interviews that I find problematic. As others have pointed out, there are huge misunderstandings relating to ME/CFS- unfortunately most of these propagate within the medical community. This has lead to a mass misdiagnosis of CFS in people who in actual reality have chronic fatigue (â?~burn outâ?T) or post viral syndrome and other such ailments. Not all people who receive a diagnosis of CFS will be genuinely ill with the disease ME/CFS. For more on this point, I refer you to: http://www.ahummingbirdsguide.com/whatisme.htm To answer your question about my authority on the illness, I have been ill with ME/CFS for six years. Two and a half of those years were spent confined to a bed and wheelchair. I have been a patient of Dr. Lewis' for five and a half years. You may wish to defend Layne Beachley for her 'courage' in talking about her ill health, but the comments that she has made over the years make it clear that the health problems that she suffers from are not ME/CFS related. A more suitable interviewee should have been researched and interviewed. Beachley's insistent association with the disease and complete ignorance on the topic of ME/CFS are hugely offensive to those who are genuinely ill with ME/CFS and who are lobbying for this disease to be treated as a genuine medical entity, separate from chronic fatigue. You allude to, but do not state whether you disagree with the legitimacy and correctness of the three points that I made in relation to your article? Do you believe my three points to be incorrect and based on fallacy? ----- To Jim Chambers: My response was not written with anger. It was a responsive piece of constructive criticism to what I believe, was a poorly researched article on ME/CFS. I doubt very much that the 'visual impact' of the 'layout [of the article] with the photos' could have compensated for the gross misinformation contained within the text. I find it worrying that as the honorary Vice-President of CFS/ME Victoria, that you are encouraging patients suffering from ME/CFS to be more 'forgiv[ing]' of both the synonymous use and association of 'chronic fatigue' with ME/CFS, and of poorly researched and widely circulated articles on the disease. Yes, as you stated ME/CFS is a 'complex' topic. But the time span within which the article was researched and written is no excuse for the gross misinformation that it contains. How does complacency and complicity (or 'forgiveness', as you put it) do anything to further demystify such a 'complex' topic? Think of the implications of such a widely circulated piece; and the further implications of your endorsement of such a piece. I agree with your statement that 'We in the CFS community need to direct our limited energies at this time to raise awareness of this serious illness and use the latest research (Canadian Guidelines) to diagnose & treat it'. This was the sole purpose of my initial post. Negligent articles such as these do much damage to the very awareness, research, diagnosis and treatment methodologies that you mention as being so important. In response to your direction that I should 'do [my] bit to raise awareness [for the disease]', my goal in striving to point out the misinformation contained within articles such as these is to raise awareness and dispel erroneous and misleading information about the disease. Oh and yes, I am quite familiar with the research of Cheney et al.