Through Fibromyalgia in this mix as well!

I am too exhausted /weak and in too much pain for 20 years, from my neck to my toes this illness hit me one day instantly ,too tired to read /watch television , type sensibly ! Go out, do my own shopping [for food, ]even too much most days to be taken ,or have conversations,. Nice doctor but can't do anything , no meds help.Fibro as well as M.E. I have found though Fibro is taken more seriously when I have had to have dental and or a few treatments for motor car accidents and I had cataracts done, nurses and doctors are very mindful. but not often if M.E. is mentioned... sorry making not much sense to me here... .

Ten years ago I was a School Principal and so fit I was doing a triathlon each weekend. An auto-immune syndrome and Fibromyalgia have now changed my life forever!! I can remember initially staying so positive-"I'm not putting up with this- I will beat this!"- for the first few years. Now it has worn me down to acceptance! Acceptance that this is my lifestyle....opiates even on a 'reasonable' day because my pain level is so high. I have tried EVERYTHING and am so thankful to doctors and those working with Eastern therapies for outstanding efforts. I have been reading others comments and smiling when you have commented about people not believing in your illness- I am at the stage where I refuse to even talk to people about it!! I am truly scared that the next smart mouthed comment will cop the full wrath of my scorn- I have had enough!!! .....or if someone wants to reach for Louise Hay's book to find out the emotional issue behind my 'physical manifestation'. Eeeek!!! There have been so many negative ripples on my life..... I don't know where to begin and nor will I bore you with it today. ME / Fibromyalgia takes peoples lives away from them. Of course our country needs to fund and research it! AND the next time you are chatting to an ME sufferer, please show compassion and believe what they are experiencing.

Name is important. The question states the problem of using CFS well. It is the label that represents the illness. Having been ill for most of my life and on DSP for 20 years and lost so much due to the level of debilitation and lack of understanding caused by the illness it would be nice if the barrier of this name was finally abolished. I think that more funding for research... would be more easily accomplished if a 'proper' name, such as ME, were used across the board by sufferers and those who represent ME/CFS in a push to have ME legitimised. Many health care providers and the community at large shorten CFS to chronic fatigue, but who has the energy to be correcting and educating. I am still almost totally debilitated, lost all my money, investments, haven't been able to work, lost career, relationships, been homeless, had to move interstate (away from my home town) to have a roof over my head... and the list goes on - I'm starting to depress myself by writing this list. It would be nice if my suffering were easily identified with, accepted and seen as valid by people other than other sufferers. For the most part I suffer 24/7 with severe pain, fatigue, weakness, nausea... alone. I also am unable to afford treatments and support that may otherwise help alleviate my suffering and could help me improve. I'm not wanting to fight other sufferers on this issue of name (don't have the energy for fighting anyone, even sitting at the computer is too much for me) however, those of us who have a strong opinion on this matter and clearly see how we suffer more from derogatory labeling have a right to be heard. Eg. Melancholia -v- Depression.

The website mecfs.org.au has great info. I wish it was around when I got ill, but we didn't even have a computer or mobile phone back then! A comment on the prevalence - mecfs.org.au says about 180 000 Australians are directly affected by me/cfs. Bond Uni has "a conservative estimate of 250,000 Australians". (http://www.bond.edu.au/about-bond/news-and-events/news/BD3_019855. ) What ever the number, it is a lot of people living a life affected by an illness they wouldn't wish on their worst enemy!

The prevalence rates vary in the literature as different diagnostic criteria are used in different studies. I think the following study is one of the best and comes up with a prevalence rate of 0.42%: www.ncbi.nlm.gov/pubmed/10527290 I think the number of people diagnosed with MS is about 20 000. The number living with HIV is about 23 000.

Peter Evans · 9 months ago

Thank you Peter. The comparisons are also helpful to get a feel for how many people are affected.

Justine Lawson · 9 months ago

I wish to thank all those who have voted for the question and have told their stories below. Too much suffering has gone on with this illness, and too much of it has been hidden from the rest of society. Most ME patients are too ill to go on a demo, but they can answer back online from the comfort of home and bedrooms. This is where we must speak up. The question is now running second, and might well be put to the people holding our government up. Please continue to draw you family, friends and fellow patients' attention to the question. It is medical research that will eventually find out what the problem/s is/are and what can be done to fix it. Our job must be to drive this research forward as fast as possible to end the suffering and prevent anyone else from having to go through this. I would also urge everyone to donate what they can to the Hunter Foundation which is the patient driver of medical research. What patients are doing, however, does not let the government off it's obligations to fund medical research into the area.

This page is fill of innaccuracies. "ME/CFS is a serious neuro-immune illness defined by the WHO in 1969." This is not true. ME was added in 1969, but not the made up nonsense term 'ME/CFS.' I also belive it is in a diseases of the brain category, not 'neuro immune'. This term comes from the recent CFS redefinitions which dare to use the term ME on them. But these are NOT ME definitions and were not written by ME experts, merely CFS experts.

Jodi, how long have you been a sufferer? I am really curious to hear your definitions of Me and CFS. What differentiates these illnesses? How is ME diagnosed? By what definitive marker? Really looking forward to hearing from you on this. If you would prefer I will give an email address to correspond with me privately.

Leah Jasmine · 9 months ago

Jodi, you are breaking my heart. Compassion is all in this illness whatever you want to call it. My adolescent daughter's symptoms are slightly different to some adult symptoms but ANYTHING that brings attention to the devastating impact of such symptom clusters is a good thing surely? Any more funding even to clarify this issue that upsets you (and others) so much would be welcome, wouldn't it? I'm sorry that you don't feel our efforts can be united.

Annie Wilson · 9 months ago

Jodi - while I appreciate all you have done, please don;t hijack this into a name and definitions debate. We want to get this question asked. Its about why the Government isn't doing more. Get them to commit to doing more, then worry about what "more" might be helpful. You don;t need definitions to solve the problem. You just need good, wide ranging data collection like the CFS Computational Challenge. Collect the data now and worry about sorting out definitions later, when we have more of the information we need to define it.

Ken Davis · 9 months ago

Let's keep our eye on the ball here and get this question asked in a public forum. Please don't hijack this opportunity to score points about names. Focus everyone!

Purple Lavender · 9 months ago

To say we need to not waste time on name debates is to completely miss the point that what is the real issue is DEFINITIONS. One cannot study a patient group composed of ppl with hundreds of differnet and unrelated diseases and expect to get ANY useful results. ME is NOT CFS. ME is a distinct neuro disease that is testable. CFS can be given as a diagnosis to just about any9ne that is tired and has other vague symptoms. Ppl need real diagnoses.

We already have hundreds of studies on vague CFS patient groups. They have helped nobody at all so far and more of them will not help either. Just using the term ME here when actually you are talking about CFS will not make this extra CFS (mixed patient group) research any more useful. ME is a distinct neurological disease and it is just not right that people such yourself are mixing together the bogus disease category of CFS, with actual ME. This is the opposite of any type of real activism or change. We need real change so desperately. People diagnosed with CFS have hundreds of differnet diseases, only a very very very few have actual ME. What you are supporting on this page is anti-ME activism. It wont help anyone with ME...but also harms all those diagnosed with CFS that have other diseases. Please look at this issue more deeply, what you have been told about 'ME/CFS' supports the vested interest groups behind this mess, NOT patients! Please see the HFME iste for real info on ME and why CFS is always a misdiagnosis. This tactic of 'the names don't matter, and we need research not politics' has been done exactly this way for 20 years has failed utterly and will continue to fail.

I contracted this disease as part of a cluster outbreak, and even more sadly in my view, my daughter contracted M.E. after having cancer at age 9. This disease took me out of the workforce (I am a skilled teacher and miss my job so much), and it took my daughter out of school, social life, work opportunities, everything young people do. Surely we as a society can do better than this. Invest in a cure, or at least effective treatment, and so many people could contribute again. That's something we're all desperate to do. (For further info, please see hfme.org)