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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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  1. S

    Comment by 'SamanthaJ' in 'THE YULE BLOG: The Coming of the Christmas Card.'

    I read the full post with all the stages of design - I love seeing how artists work, and it's such a beautiful and moving final image with the focus on mother and baby. (Great tip about using cheap paper for early designs - sometimes not wanting to 'spoil' my sketchbook stops me in my tracks...
  2. S

    Top 3 Investigatory CFS/ME specialists in the UK?

    Sorry, I did seem to have my settings so no one could speak to me, I'm sure I didn't do that on purpose! Have started a conversation. :)
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    Top 3 Investigatory CFS/ME specialists in the UK?

    Hi @ryan31337 please would you be able to PM me the details of this POTS doctor, when you have time? (no hurry) I had hoped I wouldn't need to travel to see someone, but had a rubbish appointment at my local hospital last week... So looks like I need a plan B! Thanks for your help.
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    If your doctor is clueless, direct them to the BMJ's Best Practice Summary for ME

    That's incredible! I kept looking back to check it was really the BMJ.
  5. S

    Esther Crawley TEDxBristol Disrupting Your View Of ME

    How can they say she's disrupting people's views on ME when she's confirming their prejudices? :bang-head:
  6. S

    cracky joints

    No problem. I should add that being hypermobile doesn't necessarily mean you have Ehlers Danlos Syndrome.
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    cracky joints

    Mine too. In my case it's because I'm hypermobile and my kneecaps move more than they should. If you're not already aware of being hypermobile ('double-jointed') it might be something worth looking into. There's a hypermobilty/Ehlers Danlos Syndrome section here...
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    CBT help??

    Hi Jenny, What you're saying sounds really concerning - it sounds like your therapist is not listening to you and does not understand your health problems, which sound quite complex. Her advice is downright irresponsible, although she may not know it. It also sounds like there's an element of...
  9. S

    Good article in Daily Express on Unrest

    I'm increasingly convinced there must a direct connection to SW & co high up at the Guardian, higher up than Goldacre or Simon Singh, but I'm surprised we don't know by now what or who this is - there's a sort of wilful blindness that goes beyond ignorance or laziness, they actually seem to...
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    UK, Weds 18 Oct: Jen Brea & Omar on ITV news and in The Times with Unrest

    @sarah darwins , you beat me to saying 'wow'! Excellent review, he was well-informed, compassionate, and enthusiastic about the film.
  11. S

    Top 50 CFS Blogs And Websites For Patients With ME/CFS

    I found if I clicked on the link to the blog (in italics under the image), it just took me to it without having to enter details. I agree it's not clear what happens if you enter your email address.
  12. S

    Top 50 CFS Blogs And Websites For Patients With ME/CFS

    I like that one too. Was good to see a couple of PR members' blogs on there, though shockingly no @hellytheelephant, whose blog I follow and recommend! I also like Laura's Pen, which wasn't listed - https://laurachamberlain.co.uk
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    BBC WS Business Daily (radio): Autoimmunity and technology

    http://www.bbc.co.uk/programmes/w3cstww7 This business radio programme was discussing using technology to understand individual health problems. No mention of ME but it seemed relevant. It's sooo not my area so may be something that's been discussed here before, or that's not all it's cracked...
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    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    This probably isn't important in the context of the many, many things wrong with this trial, but it bugs me. I've previously seen a couple of parents say that attending the Bath clinic was useful for getting the schools off their backs. In a well-designed trial (ha!) with school attendance as...
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    "You and yours" BBC phone in on "chronic fatigue" -26 sept

    Makes me think of a strategy known charmingly in UK politics as a 'dead cat', the idea being that if you don't like the direction a conversation is taking, you throw a dead cat on the table and everyone starts talking about the dead cat instead. Sorry, it's a really horrible analogy, but it says...
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    "You and yours" BBC phone in on "chronic fatigue" -26 sept

    Also can't get my head around the shoddy way @charles shepherd has been treated by some at the BBC these last few weeks. Well done for managing to get some accurate coverage in spite of this. Your hard work is greatly appreciated.
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    "You and yours" BBC phone in on "chronic fatigue" -26 sept

    Don't think anyone's posted this, apologies if so. Just listened online to today's You and Yours which had a tiny bit more on ME: http://www.bbc.co.uk/programmes/p05hks34 They included a recorded conversation with a caller they said they hadn't had time for on Tues. She talked about finding...
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    BBC Radio 4: The Film Programme - Unrest

    Good idea. I did try Woman's Hour when the TED talk came out, but they might be more interested now with the film coming out, especially now she's been on another R4 show. She is certainly someone their listeners would like. Edit: Just sent WH a brief comment, asking if they would be featuring...
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    BBC Radio 4: The Film Programme - Unrest

    I've suggested this interview for Pick of the Week (a Sunday night round-up of the best radio). I don't know whether having lots of mentions of a particular programme makes it more likely to be picked, but if anyone else wants to nominate it you can do it here...
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    BBC Radio 4: The Film Programme - Unrest

    Great interview. Jen was brilliant, but also the presenter didn't question the disease and was complimentary about the online patient community. Which is as it should be, but definitely not what we're used to! I don't know if she'd seen the film, but it sounded as though she had, and was...
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    "You and yours" BBC phone in on "chronic fatigue" -26 sept

    Yes, it's on The Film Programme: Edit: http://www.bbc.co.uk/programmes/b095tjvy Looks like Jen is the only guest?
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    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    Well spotted. Also, this talk by someone else in the same session:
  23. S

    ME/CFS (CFS/ME!) on BBC "Today" Programme NOW - can anyone tune in

    At the bottom of the article it says 'Analysis by Bazian'. The Bazian website testimonials section is 'interesting': http://www.bazian.com/about_us/testimonials.html If Bazian is not officially linked to the SMC it looks as though it might as well be, and seems to be being paid to write this...
  24. S

    Lady Gaga to release documentary on chronic illness

    Saw this sympathetic article about fibromyalgia on the BBC website http://www.bbc.co.uk/news/health-41224151 I don't have fibro, so can't really comment on how accurate it is, but thought it made it very clear that it's a life-long, debilitating condition. No reference to Lady Gaga, but it's...
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    Early Day Motion (271) on the NICE guideline tabled by Stephen Timms MP:

    4 DUP MPs have signed so far, which is nearly half their MPs, that's pretty good going. Well done, Northern Ireland! Of course, 100% of Green Party MPs have signed too (i.e. Caroline Lucas). Well done to her constituents for getting a party leader to sign. Well done everyone who's got their MP...
  26. S

    Lady Gaga to release documentary on chronic illness

    Also here: www.bbc.co.uk/newsbeat/article/41256614/i-have-the-same-condition-as-lady-gaga-fibromyalgia
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    Early Day Motion (271) on the NICE guideline tabled by Stephen Timms MP:

    Thanks, @Jo Best. This is my MP's wording and I vaguely remember having had this response before on a different issue years ago so it could be Labour rules, but other front-benchers may respond differently, so it's worth asking them to sign.
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    Early Day Motion (271) on the NICE guideline tabled by Stephen Timms MP:

    Apologies if someone's already mentioned this and I missed it, but my MP's just confirmed something that I had a hazy recollection of - that ministers and shadow ministers can't sign EDMs. He said he welcomed the EDM and looked forward to a debate though.
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    Ask your MP to sign EDM

    Big thanks to all of you at MEAction for getting this going, by the way!