• 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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. S

    Petition: Opposing MEGA

    But it's true
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    MEGA Questions and Answers: Latest Petition update

    if ME Ass strongly supports this project then it is quite possible that many members will be influenced to accept it unless we share alternative viewpoints, If they just read the ME Ass plea to support the project, then I suspect any poll will be a little skewed, so it's vital that we alert...
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    MEGA Questions and Answers: Latest Petition update

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    MEGA Questions and Answers: Latest Petition update

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    Simon Lawrence responds to AfME

    I was surprised to read this in my InterAction, too. 25% ME Group have been wonderful advocates for severe ME sufferers. I highly recommend them to anyone with severe ME, or anyone with a keen interest in severe ME.
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    M.E. and exercise – when will they ever learn?

    Thanks. I wondered why it was so hard. It's actually very ewsy, isn't it? Thanks for helping
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    M.E. and exercise – when will they ever learn?

    Yes. I was fit. I exercised a lot and took care of my body. I had a good career. Now people patronise me and tell me how important exercise is. I only manage to get out about once a month, and that once a month is often spoiled by some well intentioned, but ignorant person telling me how to...
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    M.E. and exercise – when will they ever learn?

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    M.E. and exercise – when will they ever learn?

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    M.E. and exercise – when will they ever learn?

    I hear what you are saying and I am glad this works for you sometimes. I, too, have tried it and it made me permanently worse. We are all trying to help others - you by sharing your experience, me by sharing mine. Unfortunately, far more people are made permanently worse, like I was. I don't...
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    M.E. and exercise – when will they ever learn?

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    M.E. and exercise – when will they ever learn?

    Well put . Wish I could express myself that well, completely agree
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    M.E. and exercise – when will they ever learn?

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    M.E. and exercise – when will they ever learn?

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    M.E. and exercise – when will they ever learn?

    Please share this on ME Ass page.
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    M.E. and exercise – when will they ever learn?

  17. S

    M.E. and exercise – when will they ever learn?

    I hope you will share your thoughts on ME Ass page
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    M.E. and exercise – when will they ever learn?

  19. S

    M.E. and exercise – when will they ever learn?

    I hope you will share these suggestions on ME Ass page
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    M.E. and exercise – when will they ever learn?

  21. S

    Take part in our Severe M.E. Symposium from home

    Who were their subjects? People with 'fatigue' or people with ICC diagnosis? How severe were their symptoms? Oh, it makes me so cross. Do some research on people with fatigue and then say it relates to ME. And were too poorly to go there and make our voices heard. I will email them again...
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    Take part in our Severe M.E. Symposium from home

    Yes, it did that to me, too. But I emailed them anyway.
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    Take part in our Severe M.E. Symposium from home

    Yes. Yes
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    Take part in our Severe M.E. Symposium from home

    Yes, yes, yes. And the GP must know that this is not a 'cure' but a coping mechanism that he should offer to anyone with a chronic illness who is having difficulty coping
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    Take part in our Severe M.E. Symposium from home

    Yes, this is probably one of the biggest things they could do
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    Positive Care Programme

    I attended the Positive Care Programme, I enjoyed it, but it didnt make me any better. Getting free massage, reflexology, Indian head massage, etc, was great. Talking to other people with long term health provlems was great. Seeing similarities and differences between people suffering...
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    OI, Coathanger pain and recliner wheelchair use

    Am new to this site. Have been trying to find out if anyone has found recliner wheelchair helps when they have both OI and coathanger pain