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

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Search results

  1. M

    PIP and ESA: what IS considered good medical information? (UK)

    Hi guys! I'm currently claiming Universal Credit (yay...). They have sent me a "Limited capability for work" questionnaire to fill out because I have been sending them endless medical certificates to say I can't work (although they insist I can do a job search of 1 hour a week lol). This is the...
  2. M

    ME on BBC news this morning

    That's a great idea @Yogi. It would be good to keep all the important stuff on one platform that's easy to reference :).
  3. M

    Esther Crawley TEDxBristol Disrupting Your View Of ME

    Don't worry, we're not the slick PR company, but we're definitely the sick PR community - and we're on the case! :rofl:
  4. M

    ME on BBC news this morning

    That was unexpected and good to see! It must be confusing to the general observer if they see equally visible news treating ME/CFS like a very different illness. It's like they're talking about two very different illnesses. If our more robust medical inquiries continue to get more public...
  5. M

    BBC article resignation syndrome in Sweden

    I haven't been able to take in the whole article yet but wow, what a bizarre and horrendous situation. I wonder how much support and attention this gets in terms of research and funding.
  6. M

    Esther Crawley TEDxBristol Disrupting Your View Of ME

    @Marky90 I did a bit of digging and found his website with a video on what his thing is about: http://www.realitycheckconsultancy.com/wib/ Essentially it's a badge you wear with a number you can change between 1-10 that describes your emotional, physical or mental capacity/well-being/energy...
  7. M

    Esther Crawley TEDxBristol Disrupting Your View Of ME

    @Marky90 I held off making a comment on Alec's talk simply because I really couldn't understand what the hell his synopsis was on about. He either means: instead of words, show them the numbers from tests etc. OR to absorb numbers into our brain to heal us lol. It does sound an awful lot like...
  8. M

    Esther Crawley TEDxBristol Disrupting Your View Of ME

    Dangerous activists of the ME/CFS community. I think most of us would get PEM just thinking about how we could be dangerous, let alone carrying out any dramatic terrorist actions :rofl:. But wait, why are some of us so dangerous in the first place? It's just hilarity at its finest.
  9. M

    Esther Crawley TEDxBristol Disrupting Your View Of ME

    looooool I don't think I have it in me to unpack all the implications made in that sentence. The conspiracy narrative that all the sick people want to kill the poor scientists trying to do them a favour continues. What I will say is: If you've actually done good, robust research then just let...
  10. M

    Top 3 Investigatory CFS/ME specialists in the UK?

    On the topic of known CFS/ME specialists, is there actually a definitive and kept-up-to-date list anywhere? This has been something I have meant to ask. I really don't know the landscape of specialists, to my detriment.
  11. M

    Study showed no serious side effects of Lightning Process

    I'm still reeling from a recent (I think Australian) news piece promoting the LP. They opened with the creator of the LP playing guitar and then discussing his hand injury, which a doctor said he wouldn't fully recover from. He then went on to say how that event put him on the path to developing...
  12. M

    Study showed no serious side effects of Lightning Process

    When I read "Lightning Process (LP) is not a treatment for illness, but a mental training program", I thought "Do make up your mind. The definition changes each time I read about it!" :rofl:. It can feel like the LP marketing team tries to heavily imply a different 'best case scenario'...
  13. M

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

    This is awesome, thank you! I am so out of touch with blogs/news outlets for ME/CFS. I'll enjoy browsing through these :)
  14. M

    Driving with ME/CFS

    It's really interesting hearing the different perspectives of individuals with varying severity in symptoms and how they affect their ability to drive. The theme I'm noticing is that the issue revolves around being able to remain consistent enough for the duration of a journey before it comes...
  15. M

    Driving with ME/CFS

    I'm sorry you had to give it up @slysaint . That's how I pictured it too , akin to drink driving. I guess I won't know until I try a few lessons and see. Luckily my symptoms aren't always so mentally impairing - I just don't know how consistent I could be whilst driving.
  16. M

    Driving with ME/CFS

    Thanks @charles shepherd , the MEA really do think of everything don't they? ha ha. I hadn't even considered insurance implications. That'd be something to explore in the decision process. Thanks very much! I'm glad driving an automatic has helped @Skycloud ! Regarding licenses, I do believe...
  17. M

    Driving with ME/CFS

    I would think so too @Hugo. A golden ticket of independence, ha ha :). Thank you.
  18. M

    Driving with ME/CFS

    Oh don't worry, I'll let them whizz past me if they insist. I'll just be ready to emergency stop when they decide to do it on the blind corners into an oncoming car! lol
  19. M

    Driving with ME/CFS

    Everyone drives like maniacs around here, it's made me a little unfairly distrusting toward local driving instructors! lol However, yeah that would definitely be the way to go. As stupid as it sounds, I hadn't considered the idea of just trying a couple of lessons just to see if it'd be...
  20. M

    Driving with ME/CFS

    That's a good point. I wouldn't use the vehicle to work.. but to just get around. Maybe go to a library somewhere to study or something! Just to get out the house.
  21. M

    Driving with ME/CFS

    Hi guys, I have been weighing up the pros and cons today over whether I should move out of my current, rural, home or simply learn to drive. I've always wanted to learn to drive but I have a small fear regarding mental fatigue when driving. I wouldn't want to put others at risk. I know we all...
  22. M

    Professor James Coyne commenting on poor British and Dutch fatigue research

    Thanks for sharing this, I will definitely watch later on :)
  23. M

    My Airbnb Situation..

    Good points @geraldt52 . It's better to be safe than sorry :). Airbnb might even have advice on this.
  24. M

    My Airbnb Situation..

    I don't even want to imagine a mortgage figure for any house in Manhattan lol
  25. M

    My Airbnb Situation..

    @Misfit Toy definitely keep us up to speed with how it continues to pan out!! :) yeah, there's definitely some leg work but it definitely beats the conventional 9-5 job inevitably burning us into the ground! @dadouv47 yeah, I haven't worked out all the bugs in the operation yet but we'll get...
  26. M

    My Airbnb Situation..

    @dadouv47 we should start a sick-landlords-cooperative and help each other raise funds to buy or do up houses to be the live in landlords and airbnb-style hosts ha ha. That could be so fun. Grow a business for the greater good and donate a percentage of our colelctive earnings to ME/CFS research.
  27. M

    My Airbnb Situation..

    That's a great idea. I'm glad you're enjoying it so far :). I love the entrepreneurial spirit! I recently came to the conclusion that renting out the spaces you own to lodgers is quite possibly one of the best ways to make an income as someone with a fluctuating health condition. The perks are...
  28. M

    So tired. Heres a clip of my day. I really thought Adderall would help :(

    Does anyone have any good information regarding pacing for @MAOAr297r I know for a fact there must be something on here (in fact, I think I even made a post asking this ages ago). I'm a bit too exhausted to explore right now, sorry :(. It won't give you more energy but it will help you manage...
  29. M

    BBC Radio 4 You and Yours today

    @ladycatlover I'm sorry you got mucked around for so long! I will certainly explore those organisations you mentioned. I also have some leads for organisations/charities in the area from my Universal Credit work coach. I have reached out for help in filling out forms and attending meetings with...