• 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

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    "Urge Incontinence" or "Overactive Bladder" major difficulty.Help! Anyone else?

    Hi Hotch Mirabegron might be worth a try. My Dr suggested it and it has made a huge difference. Hope you can get it where you are. https://en.wikipedia.org/wiki/Mirabegron
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    Child/Adolescent Siblings of ME/CFS - Participants needed UK

    Hi katriona I think you need to find out more about the history and politics involved in ME/CFS first and suggest you remove your phone number and email address. "......Rehabilitation Psychologist at the Institute of Work, Health and Organisation" Of course you could also be a troll.
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    Astounding Norwegian research breakthrough with Rituximab can solve CFS mystery!!!

    Hi Helene I was suprised by the rheumatoid arthritis link. Dr Shepard suggests trials in the UK, so we find someone to do trials.
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    Astounding Norwegian research breakthrough with Rituximab can solve CFS mystery!!!

    Personally... I don't care what caused it, how many people know why they have a disease? I want effective treatment so I can get my life back.
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    Astounding Norwegian research breakthrough with Rituximab can solve CFS mystery!!!

    The cost to the NHS of 100-mg and 500-mg vials of rituximab is 174.63 and 873.15 respectively, excluding VAT from NICE document http://www.nice.org.uk/nicemedia/pdf/TA126guidance.pdf
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    Google: No results found for "experiencing pain from noises".

    Do you mean Hyperacusis?
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    Immunovir/Isoprinosine information

    I had a list of things which I thought was relevant to Imunovir, one was oxidative stress, my specialist said he was not convinced.
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    getting worse from imunovir?

    The paperwork I got from my specialist says symptoms can worsen on the full dose and ME/CFSers should take 500mg 3 times a day and start carefully if known to be sensitive to medication. It also suggests to only take for 2 months at this dose then stop and see if the immune system reboots itself.
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    UK - British MPs to meet ME researchers 19th May - is yours going?

    All done :D
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    Laura Hillenbrand magazine article

    I think this is the article http://www.naturalsolutionsmag.com/articles-display/15878/keyword/hillenbrand/Living-with-Chronic-Pain What advice would you give to others out there who suffer from ME/CFS? The most important thing I have learned in my 24 years with this disease is to listen to my...
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    Tetrahydrobiopterin (BH4) deficiency in CFS and the connection to folate metabolism

    Royal Jelly and L carnitine promote BH4 I believe.
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    Results of Faecal Microbiology!

    Thank you for the link Glynis saved me hunting :)
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    Why does this illness keep bringing up "bad stuff" to the surface of the mind?

    I remember a study which was based on learning and passing exams. It concluded we recall information from when we were previously in the same mindset. I don't believe there is anything clever going on here our brains are just equating the suffering we are doing now to whats happened...
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    Can food poisoning help with dysbiosis ?

    No problem xchocoholic I'm back on a strict low carb, high protein & plenty of veg. I'll see if this helps first, but thanks for the other ideas.
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    LETTER, Re: The secret of Emily's 14 lost years (Daily Mail, 12 Feb 2011)

    No more fake it till I feel it Apparently this is what recovery feels like when you use LP 'In the years since my recovery in 2006, I've been used to secretly feeling I have to drag myself through life, forcing my body to be active and using mind over matter to 'fake it till I feel it'...
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    Esther Rantzen's daughter had Celiac all along

    From the same piece, Emilys comments on LP: In the years since my recovery in 2006, I've been used to secretly feeling I have to drag myself through life, forcing my body to be active and using mind over matter to 'fake it till I feel it'.
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    Can food poisoning help with dysbiosis ?

    Sorry for the late reply xchocaholic. No I'm not being followed by anyone. I can bring it forward by doing more and set it back maybe a week if I'm really steady but the nausea would be there for longer. No idea why it happens, it feels as if something builds up over the month then I have to...
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    Can food poisoning help with dysbiosis ?

    My body is doing this approx every 4 weeks (not linked to mensas). I am recovering, very very slowly.
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    Herpes Vs. XMRV

    I think mine is herpes based. I've had neuralgia for 14? years, the pain spreads with activity. I have blood blisters elsewhere :Retro eek:(and still no treatment on the NHS) but never any evidence of cold sores etc. My husband had shingles when I was first ill (before the neuralgia) and he had...
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    Professor Hooper's reply to MRC rejection of PACE Trial complaint

    Excellent letter. Thank you Professor Hooper.
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    Symptoms After Exercise Poll (PEM)

    I don't think I can give just four. My symptoms upregulate, they start with throat/glands, quickly on to coordination/cognitive, pain and gut follows then right leg goes numb and my right arm drives me to distraction. Sleep is affected but I can offset it after small amounts of activity. I...
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    BWG Statement Dec. 27th

    I agree Shannah :Retro biggrin:
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    Article: Blood Products Advisory Committee Meeting Announcement (BPAC) December 14-15, 2010

    between 6-7pm GMT but I didn't have time to read anything else!!
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    Article: Psuedo Article - Please do not read...

    I can't get through Cort, is it a secret? :D busybee, you do not have permission to access this page. This could be due to one of several reasons: 1. Your user account may not have sufficient privileges to access this page. Are you trying to edit someone else's post, access administrative...
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    Spanish XMRV researchers to report Dec 9 on immune dysfunction

    At last, someone who is more concerned about finding it than spending money on big numbers. Thank you for this bullybeef.
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    Spanish XMRV researchers to report Dec 9 on immune dysfunction

    Thank you for this eric_s, looking forward to hearing more.
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    BBC online: Dorset woman with severe ME 'left to rot by the NHS'

    If we have any property/capital it has to be used to fund nursing care - regardless of the diagnosis.
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    Phoenix rising won $300

    bump the turnip
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    Are you kidding me, you have not voted yet?

    Thanks Sasha, I didn't want to get them to sign up then find I'd breached some rules.
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    Are you kidding me, you have not voted yet?

    How are the votes audited? Is it by isp or email address?