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

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  1. Chezboo

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

    Wow! fantastic news! :balloons::star::balloons:
  2. Chezboo

    Narrow Pulse Pressure

    I wish I had something useful to say on this topic but I don't. I have very low pulse pressure and a 30+ heart rate increase when standing (probably nearly always except on the best of days). I have ruled out wasting time, money and energy going to the one place in my city that has a specialist...
  3. Chezboo

    PACE Trial Non-Starter Flaws - in a nutshell please

    You could deteriorate, become sicker and more disabled during the trial and still be counted as ‘recovered’. The authors described this as “a comprehensive and conservative definition of recovery”. Harms were not adequately reported which resulted in them being fudged over and ignored. This is...
  4. Chezboo

    the contagion spreads ... MUPS in NZ

    OMG, I'm a total MUPPET with a massive potential future risk of NZ residence. It's not funny, I know it's not funny, and yes I am being a little light with the subject matter. It's just that I wish there was some escape from the MUS monster! The Dutch have started a serious MUS campaign, I hope...
  5. Chezboo

    Opinion Piece: Current Psychiatry and its Discontents

    phew! Normal terrorism was bad enough, this illness terrorism malarkey was scaring the bejeezus out of me!
  6. Chezboo

    Opinion Piece: Current Psychiatry and its Discontents

    thanks @Woolie I didn't realise that 'illness terrorism' was an actual thing outside of the poisonous mind of a deluded psychiatrist, therefore thought you had probably created it. Well, you learn something new every day as they say!
  7. Chezboo

    Opinion Piece: Current Psychiatry and its Discontents

    @Woolie your 'illness terrorism awareness' meme is hilarious. I feel it's an important message to get out there so was wondering if you mind anyone using on twitter etc?
  8. Chezboo

    Lightening process

    Thank you @charles shepherd for posting the 'ASA adjudication on Phil Parker Group/Lightning Process:' My Dr in Sydney Australia, who apparently 'knows about CFS' told me that I might be cured by the Lightning Process, he really was extremely keen on the idea. It was a very uncomfortable few...
  9. Chezboo

    Global Call-to-Action: Help secure the World Health Organisation’s Classification of ME & CFS

    Done!
  10. Chezboo

    Janet Dafoe Joins Phoenix Rising Board of Directors

    Wonderful news! Thank you so much Janet for all that you do :):):)
  11. Chezboo

    Did you have any problem with aerobic exercise before becoming ill? Like childhood?

    I didn't have access to the variety of 'organised' sports many have being that I grew up in Ireland. It was hockey, hockey or hockey (the dark, cold windy field type). I hated hockey but loved other physical activities. I noticed that I was very good at anything I tired like climbing trees...
  12. Chezboo

    Dr. Ronald W. Davis Answers Patient Questions: Q and A follow-up to 2/21/17 Research Update

    Gosh, that seems very cruel.
  13. Chezboo

    Dr. Ronald W. Davis Answers Patient Questions: Q and A follow-up to 2/21/17 Research Update

    I thought the same thing when reading this. It's very hard not to wonder why they gave 30 million to Arts and Sciences rather than to any ME/CFS research when the situation for many is so desperate yet totally neglected.
  14. Chezboo

    Lecithin intolerance?

    @NotThisGuy Thanks for the response, all very interesting and nice to finally find someone who has had a similar seemingly somewhat unusual experience with lecithin! I was wondering if Lecithin boosted adrenals or had some role to play (hence my ‘adrenaline’ rushes on it), can’t remember what...
  15. Chezboo

    Lecithin intolerance?

    @flitza I had a horrendous time with Lecithin. It gave me severe insomnia, and swings between massive adrenaline rushes to extreme drowsiness (but still not much sleep). Initially even had bouts of anxiety with racing random incomplete thoughts. It was a very weird and extremely unpleasant...
  16. Chezboo

    I need your first month/season/year of illness for research please?

    No month or year, a very gradual steady decline. I figure I've had EDS, POTS and MCAS since the year dot. Hard to know when those became ME or if I've always had mild ME but one day about 4 years ago I eventually realised (self diagnosed) the severe end of moderate ME according to ICC and CCC (I...
  17. Chezboo

    New Org!: ME/CFS International Alliance

    @AndyPR apologies as the quote function seems to be eluding me. You said, “First, Emily explicitly provided her email in order that folks who want to can contact her to ask questions, I would suggest you send her your query. Personally, I think you are reading more into the reply than there...
  18. Chezboo

    New Org!: ME/CFS International Alliance

    Is it just me or is that statement from Solve a bit woolly? It sort of clarifies nothing, in fact it leaves me more confused than ever. Emily Taylor from Solve ME/CFS Initiative says: “At this time, we have been invited to join the conversation, but nothing formal has been established” Then...
  19. Chezboo

    Cervical spine stenosis as a cause of severe ME/CFS and orthostatic intolerance symptoms

    I had never heard of the Hoffman sign but it appears I have it. Guess I can add it to my very long list.
  20. Chezboo

    Keech, Lloyd et al: Gene expression in response to exercise in patients with CFS

    I'm just dying to know what 'a carefully-characterised sample of patients with CFS' is. Literally on the edge of my seat, does anyone know?
  21. Chezboo

    Feeling upset at my local ME/CFS society

    I’m sorry Taniaaust1, I didn’t see your last paragraph when I wrote my comment. I hope the hospital took care of you and you are feeling a bit better. I worry of course with information such as the article that ME/CFS South Australian Society are disseminating will do nothing to help your...
  22. Chezboo

    Feeling upset at my local ME/CFS society

    I couldn’t agree with you more Taniaaust1. It really is distressing to see that the very place we might expect accurate representation is in fact contributing to the gross misrepresentation of this very severe disease. The takeaway message from this article is at great odds with patient...
  23. Chezboo

    Peter White et al: Patient support group management recommendations vs medical textbooks and webs

    Why isn't that just dandy. Given me the first and last (it's the end of the day in my time zone) true and hearty lol which I thank you for. :bang-head:
  24. Chezboo

    The ‘Patients like me’ website and how it relates to ME/CFS

    Thanks parabola, looking at crohnology and similar things for other diseases is a great idea.
  25. Chezboo

    The ‘Patients like me’ website and how it relates to ME/CFS

    Just thinking, if people really did want to come together to try and get the most potential from a custom data system perhaps I could help, more in a coordination respect of course than technical! There is some work which could be done before deciding what you want to build, check for all...
  26. Chezboo

    The ‘Patients like me’ website and how it relates to ME/CFS

    Thanks everyone for your replies. It certainly has been educational. In answer to my original questions it seems pwME do not engage (or engage much) with ‘patients like me’ for a number of reasons. Likewise there are a host of other sites based on user rated medications or supplements which...
  27. Chezboo

    The ‘Patients like me’ website and how it relates to ME/CFS

    Does anyone know anything about the ‘Patients like me’ website and have any in this community attempted to shape this potential resource into something more purposeful for us, is that even possible?` The bulk of information I could find here on PR was posted in an old thread from 2010...
  28. Chezboo

    Article about ME/PACE for British newspaper - what do you want included?

    @harveythecat I'm not sure if this answers your question about ESA but there are some very stark facts in this report by Catherine Hale (commissioned by Action for ME) so it might be worth a look in relation to the total lack of government support...
  29. Chezboo

    Dr. Oz June14/16 segment on "chronic fatigue" & "chronic fatigue syndrome": the good & the bad

    Thanks for posting the info Waiting. By the sounds of things, it's all a bit tragic. Dr Oz and team really should be able to do a lot better.
  30. Chezboo

    What does your ME/CFS Look like Poll: Please describe your symptoms and Cluster

    Gradual onset so none of the above (not that I don't have lots of the above problems of course)