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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. Orla

    Understanding the economic impact of myalgic encephalomyelitis/chronic fatigue syndrome in Ireland: a qualitative study, 2021, Cullinan et al

    Hi everyone, I'm Orla, one of the authors of the study. Myself and John Cullinan are doing a talk on the study on May 25th at 7pm (Ireland/London time). If anyone wants to attend you can register at events@irishmecfs.org
  2. Orla

    Vote to get money for Simmaron Research Foundation (free and easy)

    This is very easy. Ideally vote daily (I don't know how long it is going to go on for), but any votes would be good. It is very easy. You just click on the link below, then after a few seconds a box comes up with info and click on Vote Then a box comes up and you click on "I am not a robot" and...
  3. Orla

    Brain imaging study crowdfunding request from sympathetic Harvard researcher

    Hi @RobinDurham Nice to see you back :)
  4. Orla

    Severe ME Sufferer faces ban on volunteering

    This is terrible, and bonkers.
  5. Orla

    Do you get a flu vaccine?

    I would hope so, though reading comments from people with ME they can have different reactions in different years. I would be more inclined to get it again though now that I have had one with no bad reaction, as odds are I think that I won't have a bad reaction again. I wouldn't get it if I was...
  6. Orla

    Do you get a flu vaccine?

    I got it this year for the first time and had no problems with it, but it is basically a game of Russian Roulette as there is no way of knowing in advance what your reaction will be, or whether you will catch the flu (it only protects against certain influenza strains and not against a lot of...
  7. Orla

    Has anyone tried Mickel Therapy or Reverse Therapy?

    Yes i would love to see it.
  8. Orla

    Mumps booster?

    Can you get an antibody test to see if you actually need a booster? I dont know how long this would take or even if it can be done.
  9. Orla

    should i pay $90,000 for stem cells?

    This website has interesting critiques of hope stem cell treatment (so-called) is being promoted. https://sciencebasedmedicine.org/page/1/?s=stem cell treatments&category_name&submit=Search#038;category_name&submit=Search Edit: Thanks SB for the update. Sorry you have not had any improvement.
  10. Orla

    Human Papillomavirus: Vaccination:Written question - HL2218

    @HowToEscape? I think one of the considerations with this vaccine is that the main negative effects of HPV seem to be in the future (for most people a few decades down the line, though the one used in Ireland also protects against genital warts) but any negative effect from the vaccine will be...
  11. Orla

    Human Papillomavirus: Vaccination:Written question - HL2218

    Some people may have had very severe long-term reactions. I agree that 6 months is a long window, and I would have some doubts about whether some of the cases can be put down to the vaccine. Of course if someone has a reaction immediately following the vaccine and then gets worse again on the...
  12. Orla

    Documentary: Undercover in German Lyme Clinics

    Gosh that is terrible.
  13. Orla

    Chronic Lyme scam.

    I think labs that are running unreliable or outright false tests need to be stopped. However, I can see potential problems even with this as there could be turf wars or people trying to stop competitors, so there would need to be independence in the regulatory body. At the very least the test...
  14. Orla

    Documentary: Undercover in German Lyme Clinics

    It could be an issue is some areas bit I am not convinced it is in all. None of our pets have ever had an unexplained illness, and I can't think of anyone who I know whose pet had an unexplained illness either.
  15. Orla

    Documentary: Undercover in German Lyme Clinics

    One flaw I think in the Lyme disease theory is that there doesn't seem to be an epidemic of animals getting it. I am talking about pets here, who might be regularly exposed to ticks and who has owners who would notice if they were sick. It has never been mentioned to us at the vet (they do...
  16. Orla

    Opinions on de Meirlier

    Hi Eimear, I am inclined to agree with you with regard to not trusting the Lyme test. Have you seen this thread? http://forums.phoenixrising.me/index.php?threads/documentary-undercover-in-german-lyme-clinics.55493/
  17. Orla

    Mrs Sowester's Magic Beans

    I'm glad you managed to correct the font on the small print..
  18. Orla

    Mrs Sowester's Magic Beans

    I can just see it now, fame and fortune......
  19. Orla

    Mrs Sowester's Magic Beans

    Don't worry Mrs Sowester, I hear Bristol University is very interested in conducting this sort of research. Guaranteed positive outcomes. They might even advise you on how to deflect freedom of information requests so you never have to release the trial data. The important thing to remember...
  20. Orla

    Mrs Sowester's Magic Beans

    I'm available for giving patient testimonials at the very reasonable fee of £600 a go. I haven't tried the pills yet, but like others have mentioned, the placebo effect is already working on me just thinking about them. Just goes to show how powerful they are :woot: <<<< that is how I look now...
  21. Orla

    Book review of Dr Joe Fitzgibbon's Feeling Tired all the Time

    The "sick role" One reason he is claiming that a return to work is important is that, through this, which I just find offensive. Being sick with ME/CFS is not a lifestyle choice or a "role". He also doesn’t like signing people off on a pension because of having to sign them off as...
  22. Orla

    Book review of Dr Joe Fitzgibbon's Feeling Tired all the Time

    Work and ME/CFS If you are struggling to cope at work don't expect much sympathy from this book. Dr. Joe Fitzgibbon argues strongly for people to stay at work even if they are really struggling. He mentions problems people with ME/CFS experience at work including e.g. In other words work is...
  23. Orla

    Book review of Dr Joe Fitzgibbon's Feeling Tired all the Time

    Main problems with the way Graded Exercise is promoted I think a real problem with the promotion of Graded Exercise for ME/CFS in general, is that those who promote it often don't warn of any potential harm. They don't think that there is any limit to the level patients can increase to, and...
  24. Orla

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

    You need to go back to read the first post in this thread which has 2 useful links. "diagnosing" patients with a functional disorder (i.e. hysteria) is a way to dump patients with neurological problems on primary care or possibly some "specialist" nurses or the like. The main problem with it is...
  25. Orla

    More from Science Medica Centre on SMILE

    I tweeted him a bit today and he said he is too busy right now but might do something in a few weeks.
  26. Orla

    MEA website question for October: Melatonin for sleep disturbance

    I found it good for getting me off to sleep. But unless it was a dual/long release I would wake up after a few hours. I got on very well on a low dose for years (I had managed to reduce my dosage to 1/8 of a 1mg tablet). I was taking melatonin for a few years. But then I started waking up...
  27. Orla

    More from Science Medica Centre on SMILE

    You are right, I couldn't see where there was any author on the piece (I see it is on the upper right corner). Thanks.
  28. Orla

    Book review of Dr Joe Fitzgibbon's Feeling Tired all the Time

    Thanks for your comments @Woolie I had been thinking too much about the C in CBT and not the part trying to either cause of break conditioned responses. About the last bit about dwelling, good point.
  29. Orla

    More from Science Medica Centre on SMILE

    The comment about climate change is very interesting, and sounds like they basically misreported there to. Really any paper is science should be put in context (e.g. if you have 100 papers saying one thing and one paper saying the opposite this should be noted as the one paper could be an...