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

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    BBC to broadcast programme on ME in series on mental health?

    Hi Jenny, my reading of it is that the image posted is an example of one newsbeat documentary which was about mental health but they've done plenty of others as you can see here - https://www.bbc.co.uk/programmes/p0390z6l/episodes/player I watched the one about Crohns which I thought was really...
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    UK: Short, simple letter to your MP to ask them to attend the Carol Monaghan PACE debate on 20 Feb

    I've already written to mine, fingers crossed it'll work. I think I'll phone the constituency office next week to follow up. It's great what Carol Monaghan is doing, her radio interview was really good.
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    URGENT: Your stories needed for debate in Parliament on ME 20th Feb at 11 am

    @Countrygirl That's great - thank you for posting this. I've been meaning to ask about this as I tuned in to Parliamentary TV (not one of my usual channels!) the other day when I saw your message about it but obviously it wasn't on. I shall definitely be contacting my MP and writing to Carol M...
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    Esther Crawley TEDxBristol Disrupting Your View Of ME

    This letter is amazing. Much gratitude to the person who used up precious energy to write it. Really well done.
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    Esther Crawley TEDxBristol Disrupting Your View Of ME

    I watched the talk and found it quite bizarre but I didn't think it was too threatening (as a result of its bizarre-ness mostly). I thought it was quite muddled and the message/story wasn't particularly clear. Jen Brea's talk was amazingly concise, clear and so genuine by contrast. A friend of...
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    Jen Brea talking to GMT news

    @JenB you are doing SUCH an incredible job. The recent articles in UK press have been a huge boost to me, it makes such a difference to have a proper representation of ME in the media. Thank you so much! I thought the telegraph article was great and the comments below were actually really good...
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    Good article on Jen's film Unrest in The Telegraph today 24th Oct

    Great article!! :balloons: So good to see all these well written articles emerging. I've been messaging Woman's Hour to try to get them to cover it but no luck yet.
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    UK, Weds 18 Oct: Jen Brea & Omar on ITV news and in The Times with Unrest

    @jstash adding him to my list of people to thank!! (How nice to be in this position!) I agree, it's important to reach out and show gratitude when people have made an effort to give a good representation. @SamanthaJ @sarah darwins it really is a perfect review isn't it? Nearly brought a tear to...
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    UK, Weds 18 Oct: Jen Brea & Omar on ITV news and in The Times with Unrest

    http://www.bbc.co.uk/programmes/p05khqq3 really good review by Mark Komode on five live. Good for him! Also an article in cosmo http://www.cosmopolitan.com/lifestyle/a12779054/what-is-chronic-fatigue-syndrome/ @Demepivo thanks for sharing the Times article - really good I thought. @jstash I'd...
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    UK, Weds 18 Oct: Jen Brea & Omar on ITV news and in The Times with Unrest

    Wow, she is a incredible. So unbelievably grateful to Jen for doing all of this. And to Omar. Amazing!
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    How likely is a UK rituximab trial?

    I know it is so frustrating and we're sick of waiting. I really feel for you. But, at the same time, I think that your Doctor should be struck off if he starts giving rituximab to patients at this stage - it's a powerful drug and so far there isn't enough evidence to show that it works. Plus...
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    Ben and Claire's adventure to Davis-Dafoe land!

    I'm a bit behind on this thread, not been online for a couple of days but just wanted to more than 'like' this post - so feeling it! xxx
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    Ben and Claire's adventure to Davis-Dafoe land!

    @Ben Howell, LOVE this - moments like this are powerful when well but so much more moving for us who don't get to go outside much. The world IS awesome! Lifted my spirits just hearing about it, thanks :)
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    How likely is a UK rituximab trial?

    @Jo Best Thank you!
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    BBC: Research in Norwich could offer ME/CFS breakthrough

    I've thought about it and, personally, I am going to heed the advice of Fluge and Mella and not take rituximab outside of trials. It may be that more is known in relatively little time which will be worth waiting for. I am desperate but I've waited so long already, what's another couple of years?
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    BBC: Research in Norwich could offer ME/CFS breakthrough

    Hmmm, I don't know. Maybe Invest in ME could provide someone to talk about their work, and Action for ME/ ME Assctn have pwme who would be willing to talk? I would find it very difficult to do myself at short notice.
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    BBC: Research in Norwich could offer ME/CFS breakthrough

    Thank you! Being an expert in Radio 4 as listening to the radio is one of the few things I can do these days, I reckon Woman's Hour is a good bet. I wrote an email mentioning Jen Brea's talk as well, not sure if that was a good idea or not. In retrospect maybe would have been better to mention...
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    BBC: Research in Norwich could offer ME/CFS breakthrough

    Well done! I just emailed Woman's Hour and asked them to cover it.
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    BBC: Research in Norwich could offer ME/CFS breakthrough

    Ah, I didn't know that. That's very heartening. Thank you. Haha! Humour very much appreciated :)
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    How likely is a UK rituximab trial?

    @Jo Best Thank you! I don't use facebook, will you alert us here when it is available? Thanks :)
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    BBC: Research in Norwich could offer ME/CFS breakthrough

    HAHA!! That made me laugh, I feel you! This is brilliant news. Go Norwich! I am so emotionally overwhelmed by the Jen Brea TED talk and now this. I need to lie down in a dark room (which doesn't make a change from normal but still!) But are there even any anecdotal success stories from anyone...
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    How likely is a UK rituximab trial?

    @Jo Best thanks for keeping us updated on this. Do you have any idea if the talk will be recorded?
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    How likely is a UK rituximab trial?

    Great post @Jo Best , much appreciated :)
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    How likely is a UK rituximab trial?

    Thanks @veganmua I think this is encouraging - I trust the team working on this. I think the realistic hope is that rituximab research will lead to a much better understanding of this disease which will in time lead to treatments. But I also think it's also good to dare to hope for everything...
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    How likely is a UK rituximab trial?

    Hi, this is very interesting. I'm a bit confused because Dr Bansal has said that there is no chance of a UK rituximab trial starting any time soon. We don't know the results of the Norwegian phase 3 trial yet, and it may very well not be positive. @Jonathan Edwards has spoken (sensibly) on here...
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    PACE and NICE guidelines raised in Parliament NOV 2016 MORE

    E-mail sent, thanks for the heads up!
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    Can anti-virals cause viral symptoms? (Aciclovir)

    That's helpful - I will go slow with upping dose. Did you find it helped at all?
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    Can anti-virals cause viral symptoms? (Aciclovir)

    Thanks @minkeygirl. I started at 400mg per day for two days then took just 200mg yesterday and today because it had an effect on my stomach. My stomach seems to be ok on 200mg so I'll stay at that until cold sores gone and then increase again I think. I'm intrigued to know why this would have...
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    Can anti-virals cause viral symptoms? (Aciclovir)

    Hi, I have just started aciclovir and now have developed mouth ulcers on my lips for the first time in 14 years. I'm just wondering if anyone has any ideas about why this might be. Can anti-virals re-stimulate latent viruses? (seems unlikely but who knows...) I developed ME in 2002 whilst...