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    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. T

    Seeing a significant improvement

    Or then it's due to the vitamin d or a combination of all of the above! I don't know how you would test it just giving my anecdotal experience for what it is worth. The fact is for me when I'm doing all of the above my tolerance for a number of things is improved.
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    Seeing a significant improvement

    My belief is that it could be our gut bacteria that is the key to tolerance and hence the reason why there is no one fit for all. I can only tolerate the livon labs one mind you.
  3. T

    Seeing a significant improvement

    You're probably right.......will have to build up the courage to do a cold bath!
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    Seeing a significant improvement

    Hi everyone, I've seen a significant improvement in my overall condition in the past few months so I thought I would share what I've been doing. To fill you in on my background I have had ME for 13 years; I was very bad for the first few years, for the past 6 I have been able to work part time...
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    BBC interview with Ron Davis

    Personally I think the approach here in the UK is part of a bigger picture which includes a running down of services offered on the NHS. I think there will be/is a move to class a lot of illnesses under the medically unexplained symptoms banner for one reason - to save money. ME/CFS was the dry...
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    MUS, PPS services and IAPT integration into NHS primary care - what's happening across the UK?

    Gawd, she makes Cruella de Vil look warm hearted in comparison! Particularly like her attempt at 'empathy'!
  7. T

    Physiological Changes

    I've developed sacroiliitis and now am about to have an MRI a year on from that to check that anklosing spondylitis isn't the cause. In the mean time I have developed quite bad stiffness in my knee and intermittently my neck. I have EDS so whether it's related to that or the ME I don't know...
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    Gemma Climbs Her Mountain -play about ME, help it tour!

    Thanks Jaime, will do!
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    Gemma Climbs Her Mountain - please donate or share & help us go viral!

    Thanks for the good luck wishes, much appreciated! We are hoping, if funds allow, to be able to stream the performance so that those who are bed bound or unable to access the theatre are still able to see it. It's a bit frustrating at the moment because the people who have expressed an...
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    Gemma Climbs Her Mountain - please donate or share & help us go viral!

    Hi Asa, Thanks for your questions and interest. Let me explain. The show has been created around my limitations with a crew that understand the challenges I face and in fact out first programme came with the caveat that I might not be able to perform! Of course it is a huge push for me to do...
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    Gemma Climbs Her Mountain - please donate or share & help us go viral!

    Hi everyone, We created this original play 2 years ago after interviewing over 200 patients with ME. Their testimony is interweaved with my story of being an opera singer before I was struck down with this illness. We have a date to perform again at Oldham Library in June...
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    Gemma Climbs Her Mountain -play about ME, help it tour!

    Hi everyone, We created this original play 2 years ago after interviewing over 200 patients with ME. Their testimony is interweaved with my story of being an opera singer before I was struck down with this illness. We have a date to perform again at Oldham Library in June...
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    Something that's helping me.....

    Hi Mary, Yes, I'm sure that I do. I've cut all those things out for the past 10 years and that's what enabled me to go from being bed-bound to having some sort of life. Even though I cut them out though there was never an improvement in symptoms when I re-introduced them , I always reacted just...
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    Something that's helping me.....

    Hi, I just want to share a chance discovery that I've made in the hope that it might help some of you. My doctor has been willing to prescribe sodium cromoglycate (Nalcrom) off licence to help severe food intolerances I have. Firstly - it has helped. The crushing fatigue I normally get with...
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    Is it worth seeing an ME/CFS specialist?

    Yep I agree that it's not all. I'm not recovered. But what I'm saying is that the improvement that that brought was far bigger than anything any "specialist" ever did. Also I believe that sugar is a huge one, I'd really advise you trying to give it up. I worked out that a lot of my flu-like...
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    Is it worth seeing an ME/CFS specialist?

    Here's my 5 cents worth. I have had M.E. for 9 years and spent a small fortune on "specialists" who have more often than not made me worse. By far the biggest help to me has been a gluten/dairy/yeast/caffeine and sugar free diet with an hour of meditation and 2 litres of water daily and a small...
  17. T

    Treatment for sugar intolerance!

    Hi everyone, Just thought I would share something strange that I discovered by chance and would be interested to hear if this works for anyone else? Ever since I've had ME I've had a very strange to reaction to sugar - i would without fail develop flu-like symptoms about 12 hours after eating...
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    Can anyone explain this?!?

    Hi everyone, For the past 3 days I've been taking about a tablespoon of chia seeds every day. They are definitely giving me more energy and I feel brighter cognitively speaking. However , I also seem to be getting chills which aren't too pleasant, my hands and feet are freezing and I feel...
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    Symprove - Anyone tried?

    Thanks for the welcome Nielk, that's really nice of you! I may have spoken too soon regarding the symprove as took double the dosage last night as I was thinking that I was doing well with it and starting to crash now! You would have thought by now that I would have learnt how slowly you need to...
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    Symprove - Anyone tried?

    Hi everyone, I've just started the new probiotic drink symprove and its the first probiotic in 8 years of illness that I seem to be able to tolerate. Just wondering if anyone else has tried it and, if so, have they noticed any results? I'm only 4 days in but would say that I feel a bit calmer...