• 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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  1. C

    Unrest event for medics in Sheffield

    Thank you
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    Unrest event for medics in Sheffield

    Delighted to help. When I heard that you had offered your time, I was determined that the means would be found. When I visited the hotel (it is a nice one) the manager generously, and immediately, offered your room and full English breakfast FOC. Sheffield ME and Fibromyalgia Group kindly found...
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    Talk Radio Europe covering ME/CFS - Wednesday 20th September

    Just listened. Caught it a couple of minutes in. Good interview.
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    NHS Bristol on 'Management of somatoform disorders' - read this and weep.

    I understand that this has been brought to the attention of the Countess of Mar. I agree with all the comments here. It's absolutely appalling.
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    Is there research on menopause and ME/CFS?

    Menopause was fantastic for me. For years my ME symptoms would deteriorate badly every month when I had a period. Even when I'd passed the stage of being bedbound virtually all the time, I would end up spending two days a month in bed. My symptoms would start to improve and then it would all go...
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    For those who attend the UK's Fatigue Clinics: what your therapist is told/believes

    Actually, in my experience of being involved with a regional ME Charity for the past decade, what you describe can be a benefit of ME Clinics. Many people are struck down by ME and have absolutely no idea what is happening to them, to the point where they wonder whether they're going mad, when...
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    Bad news to the MEA from NICE: no review considered necessary

    Thank you, I did. The glitch seems to have been fixed now. Sadly it's lost in amongst all the other comments so it isn't seen at the top and it's only got about 11 "likes" so far, so won't be noticed.
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    Bad news to the MEA from NICE: no review considered necessary

    I've just been informed that there's a technical fault.
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    Bad news to the MEA from NICE: no review considered necessary

    You're welcome. Actually, she didn't and it's only recently that I became aware of the significance of her contribution, as I didn't realise that the NICE GDG consisted of so few people. I always assumed that she had been part of a broader consultation, something like the stakeholder's list. I...
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    Bad news to the MEA from NICE: no review considered necessary

    I've just tried to post this comment on the MEA Petition, after signing in to Change.org, but it won't let me. It keeps telling me to try again. I signed the petition a couple of days ago, but I thought you could comment retrospectively. Is it because it's too long? Does anyone know? "I was...
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    Bad news to the MEA from NICE: no review considered necessary

    I can confirm that Sheffield ME Group (now Sheffield ME and Fibromyalgia Group) emphatically subscribe to the biomedical view of ME. My first contact with the group was in around 2007, when Professor Malcolm Hooper spoke at the group's Annual Conference. I had only just been diagnosed. I...
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    Simon Wessely on Multiple Chemical Sensitivity (MCS): "related to expectations and beliefs"

    I identify with your comments completely. My chemical sensitivity has improved over the years, but I have often reacted to a substance before I could even smell it. An example is that unbeknown to me, someone lit a joint in the cinema. My vision blurred and I started to feel light headed. My...
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    Pins and needles

    I honestly don't remember. It was 28 years ago. I think I must have, as I had an MRI and nerve conduction tests. If I did, I don't know which specific things the tested for. It did resolve on its own eventually.
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    Pins and needles

    I had this, seven years before I developed "full blown" ME. The pins and needles started in my toes and then spread to both legs, arms and eventually my whole body. I then developed numbness over my entire body. I used to burn my mouth with hot food and drink as I couldn't feel that it was too...