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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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Search results

  1. Jan

    'UNREST' - UK Premiere at Sheffield Film Festival on Sunday 11 June

    Thanks Charles, sorry I've only just noticed that you had replied to this. That all sounds really good. I'll be in touch if we manage to get a screening arranged in Cornwall, I've seen at least one person on the MEA fb page asking about Cornwall.
  2. Jan

    Google health recommends a psychologist and GET to treat CFS/ME

    Yes, I was looking for the 'Bullshit' button.
  3. Jan

    Reaction to Stevia?

    I have been using Truvia, ingredients as follows Spoonable Erythritol Steviol Glycosides (Stevia Leaf Extract) Natural Flavourings Tablets (which I have been using the most) Lactose (From Milk) Steviol Glycosides (Stevia Leaf Extract) Flavourings Cross-Linked Cellulose Gum...
  4. Jan

    Reaction to Stevia?

    Really? I've been using this stuff for ages to sweeten drinks etc, you've got me worried now.
  5. Jan

    'UNREST' - UK Premiere at Sheffield Film Festival on Sunday 11 June

    Hi Charles, I just wondered what the MEA is doing re Unrest? A group of us are trying to get it shown in the South West, we have approached Bude cinema so far.
  6. Jan

    ALL Countries Please sign the MEA's new petition to NICE:do not classify ME as 'functional'

    I am logged on via fb, at the top right hand side of petition there is an image of my fb avatar, if I click on this it gives me the option to log out.
  7. Jan

    QMUL spent £250,000 in legal fees to prevent the release of the PACE trial data

    Is this still on Twitter, I shared it last night, but can't find it now?
  8. Jan

    BBC Radio 4: The Film Programme - Unrest

    If I was well enough to attend we'd happily take you Vivien. I'm sorry, I've been a rubbish friend not getting to see you yet. There never seems to be enough hours in the day having the ferrets to take care of, housework, garden etc. It would be easier if I still drove, but I no longer feel safe...
  9. Jan

    BBC Radio 4: The Film Programme - Unrest

    Has anyone tried to get a screening in the West Country at all? I've seen nothing past Bristol so far.
  10. Jan

    "You and yours" BBC phone in on "chronic fatigue" -26 sept

    It's another clever diversion tactic from Crawley and co. We are all talking and tweeting about the LP trial, instead of the decision by NICE. This was huge news for us, and we are allowing it to be totally overshadowed by Crawley's small trial. Crawley dismisses biological trials with such few...
  11. Jan

    10-year old sufferer speaks out

    I watched this on tv last night, had no idea it was going to be on. Shannon is a little star, bless her!
  12. Jan

    "You and yours" BBC phone in on "chronic fatigue" -26 sept

    I honestly feel that listening to that woman is akin to emotional abuse. I was totally sickened to hear her at the end, it ruined the whole thing and I may not have bothered listening had I known she was taking part, let alone totally unopposed, with no right of reply from Charles. She had had...
  13. Jan

    "You and yours" BBC phone in on "chronic fatigue" -26 sept

    Totally agree, many pwme felt conned into listening to and taking part in this programme thinking it was as the title suggested, a programme about NHS treatments (or the lack of them) for pwme. LP is not an NHS treatment, so this was basically a blatant advert for the LP, and people will now be...
  14. Jan

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    Has the ME pot reached the total funded for male pattern baldness yet? Lol, I know I sound so ungrateful, but, jeez we're supposed to be so grateful for the tiny offerings, compared, to say MS, RA etc. The funding is so far off what the disease burden merits it's still almost laughable.
  15. Jan

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    Call me a cynic, but anyone would think they don't want ME/CFS cracked.....yet.
  16. Jan

    What gives you joy every day?

    Rikki and Lucy sound like such characters, they are the funniest creatures with huge personalities and I'm sure they all deliberately do silly things to make us laugh every day. Have you seen them doing their 'war dance'? It has me in stitches every day watching it, when they are really...
  17. Jan

    What gives you joy every day?

    I have seven of the little terrors, all from rescues or re-homed. Their names are Lily, Steve, Tommy, Frankie, Charlie, Teddy and Thumbelina. Thumbelina and Steve were named by the shelter, Steve was named after the RSPCA officer who picked him up, we tried to change his name but kept forgetting...
  18. Jan

    What gives you joy every day?

    Wow, you have such an amazing, beautiful view, I would love to live near the sea. Your doggy is gorgeous too :) As @NelliePledge said, I would also like to add the online ME Community, knowing there will always be someone there to help you or to listen means such a lot :hug:
  19. Jan

    What gives you joy every day?

    That was one I forgot @TigerLilea, sitting in front of my woodburner in the winter months, it's so cosy. I'm also rather attached to my lovely wool blanket I use when sitting downstairs. Ooh, and my sheepskin slipper boots bring foot heaven, after years of suffering from cold feet they are...
  20. Jan

    What gives you joy every day?

    Cups of tea (decaf) :mug: A cream tea or cake when I get out although I really shouldn't eat wheat or dairy :cake: Desserts and chocolate, not so often these days since I gained weight Dried fruit (mango, mixed berries, and my new favourite, sour cherries) I'm kidding myself that they...
  21. Jan

    The role of high expectations of self and social desirability in emotional processing in IBS

    It's a miracle cure for everything it seems, might as well do away with most of the NHS. They'll be sending out psychs with ambulances next.
  22. Jan

    Win a rubber duck - name that research

    Where does the money keep coming from, there seems to be a bottomless pit of research funds for this type of 'research'?
  23. Jan

    We are the Establishment & it's plainly evident that we don't give a rat's arse about ME

    No it doesn't, it feels like the hell that is our reality.
  24. Jan

    We are the Establishment & it's plainly evident that we don't give a rat's arse about ME

    I guessed it was a spoof, but it still made my stomach churn reading it as I imagine that's exactly how they see us :cry: Will things ever change in ye olde UK?
  25. Jan

    Cravings when fatigued

    I crave sugary food and salty foods (with carbs) when I crash. The cravings are 100x worse since I've been taking Lyrica. No sexual cravings though, more like the opposite as I am usually in a lot of pain.
  26. Jan

    I'm going to a MUPS focus group

    There is also the question of medical ethics when only providing psych treatments The NICE guideline for ME/CFS is unethical – Dr Diane O’Leary, Kennedy Institute of Ethics | 23 August 2017...
  27. Jan

    Video by Dr Myhill: Time to stop the abuse of CFS patients

    But it's not illegal to prescribe 'off license'.
  28. Jan

    Video by Dr Myhill: Time to stop the abuse of CFS patients

    Why did the GMC stop Dr Myhill prescribing Valacyclovir? I thought if you saw a doctor privately they could prescribe what they want within reason?
  29. Jan

    CMRC 2017 conference update: Look who’s flying-in next month!

    I don't think I could bear to hear him talk about the treatments he uses, knowing full well in the UK we are denied access to any of them. It breaks my heart, we suffer, whilst others profit from our misery. All those poor souls in darkened rooms, all those poor souls with no hope...
  30. Jan

    Video by Dr Myhill: Time to stop the abuse of CFS patients

    @Ambrosia_angel There isn't a single current UK ME researcher who will do this.