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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. Hilary

    Comment by 'Hilary' in 'Detox and replenishment of gut microbiome in order to alleviate severe IBS symtoms'

    Hi 62 miles - no problem at all and the recipe looks great. I'm about to embark on an exclusion diet to see if there's anything I really should actively avoid but my instinct tells me I need lots of veggies and fish - shame about the steak... Will be interested to hear how you do in Nov. Hope...
  2. Hilary

    Comment by 'Hilary' in 'Detox and replenishment of gut microbiome in order to alleviate severe IBS symtoms'

    Hi 62miles how are you doing? Would be interested to hear about your mega breakfast recipe if you get a minute but no prob if you're busy. Vegetarian plus fish sounds likely to be good for me too. I had a delicious steak on Saturday........ been unwell ever since with digestive problems and...
  3. Hilary

    Study showed no serious side effects of Lightning Process

    Hi @Inara - don't worry, none taken! Sorry if I was bit crispy in my response ;) And I'm very sorry you've had bad experiences. I completely agree, therapy can't heal ME. The best an empathetic therapist might do for some people, is help them come to terms and cope with its impact, nothing more.
  4. Hilary

    Study showed no serious side effects of Lightning Process

    Well I'm an experienced counsellor/psychotherapist and my methods are absolutely not similar nor do I make any promises about outcome since I'm not omniscient. Therapy may or may not help the client but whatever the outcome, I would never 'blame' them. I should add that I have done LP which is...
  5. Hilary

    Two good pieces on ME

    Both excellent pieces and yes, the second one certainly rang bells with me. I recall the first consultant I saw telling me he couldn't see anything wrong with me.... he thought I was 'just a bit depressed and had had too much responsibility..' Silly girl - get back in the kitchen where you...
  6. Hilary

    Breaking News! UK ME/CFS Biobank team receives largest ever grant to continue biomedical research pr

    Fantastic news!! Huge thanks to all involved - though as CS says, ironic that the funding is coming from outside the UK. Time the UK medical establishment woke up, got its act together and caught up - still far, far too much mistreatment, misunderstanding and total neglect of patients.
  7. Hilary

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

    I'd rename the whole debacle the Lightening (Your Wallet) Process
  8. Hilary

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

    Completely understand what you're saying but I'd be entirely comfortable with making myself believe in something if it would then relieve me of 24 years of ill health. I had a go. I wanted to believe it (this is some years ago btw, before I got old(er) and wised up). I knew someone who had done...
  9. Hilary

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

    :lol: haha this made me laugh - conjured up a vision of millions of us all over the world, standing on our bits of paper and shouting STOP!!:eek: at ourselves.. (and I speak as one who has done the LP, done the shouting - including in the changing room of Marble Arch M & S..- and got MUCH...
  10. Hilary

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

    Yes, thank you @charles shepherd - excellent stuff. Good interviews with patients too. Shame they levered in an extended advert for LP at the end..
  11. Hilary

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

    'Urk' - I like that. Does she know anything about OMF research, Naviaux, Fluge and Mella??
  12. Hilary

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

    :bang-head::bang-head::bang-head:
  13. Hilary

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

    Oh no:eek::eek::eek: - aagghhh indeed. And now it's St Esther......
  14. Hilary

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

    More patient experiences which will help to show the illness for what it truly is - currently a girl speaking who was made much worse by CBT and GET - had to start using a wheelchair having previously not done so.
  15. Hilary

    New Times article on NICE (mostly good)

    Ah that's better. It appears I was ignoring you @AndyPR - have no idea how that happened and can only blame user incompetence - nothing personal. I need a biscuit.
  16. Hilary

    New Times article on NICE (mostly good)

    I know I have brain fog but I can't find any post by @AndyPR - where has it gone?? Have looked several times..
  17. Hilary

    New Times article on NICE (mostly good)

    Good article but I can't comment either -I'm just a 'registered user' not a paying customer - grrrr annoying as there are some pretty crass comments I'm itching to respond to:mad:. No doubt lots of others are too....... My guess is they want our :moneybag::moneybag::moneybag:
  18. Hilary

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

    THEY JUST DONT GET IT!!!!:bang-head::bang-head: Several times Phil Parker refers to "chronic fatigue and ME" in the same breath. He also says at the end (I paraphrase I think) that there were no adverse events resulting from the trial. Quod erat demonstrandum or something like that. If you have...
  19. Hilary

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

    I did the LP - it was garbage - I got WORSE. Interestingly, before we started, Phil Parker told me they have trouble with lawyers and engineers who do the course. Wonder why? I know people who have benefited from it but I question whether they had ME at all?
  20. Hilary

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

    hahaha I thought this was a serious thread.. Are there any biscuits?
  21. Hilary

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

    :rofl::rofl::rofl: Having a shit day/week/year and that made me laugh out loud :D
  22. Hilary

    Niacin queries

    Thanks @rodgergrummidge - lots of information there. There is some evidence that, despite the shed loads of supplements I take and plenty of protein, I'm not absorbing stuff. I think I'll start with low dose (50mg), see how I go and get bloods checked.
  23. Hilary

    Niacin queries

    Thanks @helen1 - that sounds a good idea. Really don't want to aggravate the migraines which are so disabling already.. @TigerLilea - yes I do take magnesium, usually 600mg. I have a strong suspicion though, that my absorption is very poor so I'm not sure how effective this is. I've just...
  24. Hilary

    What are you able to do on a good day?

    I agree with @arewenearlythereyet , I find there is an insidious cumulative effect over a matter of days or even a week or two, which can make it hard to keep track of where I am on the slippery slope towards a crash. Sometimes cause and effect is quite clear, other times less so - and my days...
  25. Hilary

    Niacin queries

    I'm looking around for supplements which will help with sleep and have been looking at niacin. From what I've read so far, two queries come to mind: 1 I've found several references to caution with niacin if you have gallbladder disease and I have gallstones. Anyone understand the reason for the...
  26. Hilary

    Bristol Uni should clean up its clinical trial registries by publishing 2 trials

    I've done the LP - it was garbage and, in my view, not suitable for people who genuinely have ME.
  27. Hilary

    Poll: How many steps do you take a day?

    This is a really interesting thread. I have no idea how much I do, step-wise, in a day but this is inspiring me to find out, especially as I am very lacking in discipline and do quite a lot of roller-coastering...:eek:... I have always had a strong impression that if I don't push my limits...
  28. Hilary

    Dr Apelles Econs

    :hug:
  29. Hilary

    Dr Apelles Econs

    Hi @wiltedflower77 - am seeing him Monday. As far as I'm aware, my only allergy is nickel but I may be wrong. The nickel allergy started out as just showing on my skin (rashes from jewellery etc) but apparently after some years it becomes systemic causing neurological and digestive issues. I did...