• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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    Comment by 'Nermalina' in 'IF I WEREN'T ILL'

    Wonderful! Thank you for reminding me that we have to become wise to endure. There are some compensations for having this horrible illness. I needed this! I bit down today, so thank you very much today for sharing. It has made me feel much better. :-)
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    Is the Marshall Protocol a good or dumb idea?

    This is a very boring blog, I'm afraid, but so important for me. I have finally found a doctor who is interesting in treating my CFS. BUT I think she's wrong. She wants me to do the Marshall Protocol...personally, I KNOW I have POTS that has been caused by herpes viruses (ie. Epstein Barr...
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    Comment by 'Nermalina' in 'My Letter to the APA'

    This just makes me want to cry. Today I cannot stand up without my heart rate shooting through the roof and fatigue flooding my limbs. Does this mean I'm crazy? Apparently. Great letter, thanks for sharing it with us.
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    Article: The Golden Girls: our reality in a humorous context

    This is the only time I have seen this disease represented on tv or film - and it is done so well! Aside from the black humour I've personally employed over the years to deal with ME, this is the only time I've had a chuckle over it. I might download it onto my phone and show it to the next...
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    Comment by 'Nermalina' in 'Contamination is DOA'

    I read a little factoid in a book a few days ago that 8% of our DNA is from a variety of retroviruses that we have absorbed/survived. My jaw dropped open, and in the middle of the book shop shrieked to my partner 'If this is the case, why is CFS/ME and XMRV so inexplicable to scientists????' I...
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    Comment by 'Nermalina' in 'How sexism gave men a "woman's disease"'

    Hello illsince1977, I had the experience of reading Susan Sontag's 'Illness as Metaphor' and she nailed everything I wanted to write about CFS in her book in the 1980s! This is broader than feminism, and in my mind 'somatised' disorders go beyond misogyny and into an even scarier realm whereby...
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    Comment by 'Nermalina' in 'Life Goes On Without Me'

    As Sandgroper wrote 'It will be a small world but a world of my own.' My world is sometimes very beautiful and rich, essentialised into a small cup of being. While my friends have grown through external and reactive events, I have had to grow through isolation - both physical and existential...
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    Article: Treatment the UK way - the ME Association's ME/CFS Treatment Survey

    This illness is not mild. I'm sick of CFS being conflated with being chronically tired. It's not the same. If you are tired, you can still ride your bike without feeling like a truck ran you over for the next two weeks. People do not have their lives destroyed by a 'mild' illness. Since...
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    Comment by 'Nermalina' in 'How sexism gave men a "woman's disease"'

    Michelle, this is refreshing and fun. Thanks so much for a punchy analysis of how the creation of CFS/ME as a 'woman's disease' has led to its being relegated to the bottom shelf of funding. Could you consider publishing this in a mainstream mag? It's really well written, and would be of...
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    Article: Chronic Fatigue Sydrome: 10 Things People Misunderstand About This "Fatigue"

    Oh my, this is excellent. Having partially recovered after 12 years of 'CFS', I was thinking about the difference between 'tired' and 'having a crash' CFS style. I haven't slept for two days (insomnia seems to be an ongoing CFS issue for me), BUT even then I am NOWHERE near as exhuasted as I...
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    Comment by 'Nermalina' in 'Mental Health and ME'

    Hi, There are there some great, thoughtful responses here. I guess I was thinking crisis contact details globally - ie. Australia, U.S.A., U.K. Being in Australia myself, I could suggest say, Lifeline. However, it is a little difficult to know the best way to go about it on a huge...
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    Mental Health and ME

    There was a recent and very concerning post by a member who has displayed extreme suicidal ideation. I feel worried about her, and it got me thinking - because people with ME/CFS are often maligned by GPs and the public, and because of the possible neurological impacts of the illness (I've had...
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    Comment by 'Nermalina' in 'Sanity'

    Tania, I'm really concerned - you say you have been ambulanced to hospital twice - did they not give you a mental health assessment? Regardless of whether or not the cause is ME, you should be taken seriously. There must be some emergency services you can contact. I'm not sure what country...
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    Comment by 'Nermalina' in 'Back to work?'

    Wow, yeah HR is the beast with teeth. They are totally the enemy. Hence my bind. I don't want to 'tarnish' my reputation and become known as a whinging 'malingerer'. It's not just CFS that gets this stuff - my mum is missing parts of her spine, is in tremendous pain, and gets routinely...
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    Comment by 'Nermalina' in 'Back to work?'

    Thank you so much everyone for your comments. It is really bizarre to be at work and having to hide how rotten I'm feeling. Sometimes I go to the toilet just so I can sit down and close my eyes! I have found all of your comments very helpful, especially a) they don't need to know my specific...
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    Nermalina

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    Back to work?

    After many years of being away from full-time work, I just committed to a short stint of FULL TIME work. After a week...I have managed...three days. I feel like somebody has run over my body with a lawn mower. And this is an improvement. 13 years ago, I was like a frog stuck in...
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    Comment by 'Nermalina' in 'Nothing at all to do with illness.'

    Hey knackered, what a strange little world the human mind is. I wonder if it came from a dream?
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    Article: The Committee on Itself: the CFSAC Comittee on XMRV, the CDC, Its Charter a

    Hi Cort, Just wanted to say that I really appreciate the work you do at parsing the complex political and scientific information about research into CFS. There is very little media interest in ME/CFS in Australia (even the new measures to prevent blood donation from CFS patients received...
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    Are You a Victim of Doctor-Caused PTSD

    I love your attitude, it's fantastic. Good on you for pointing out to the doctor the obvious: I'm depressed because I have an idiot for a doctor! It's a classic catch-22 situation, and the longer one protests one's sanity, the more one confirms one's insanity to the torturer/doctor...