• 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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Search results

  1. Purple

    CFS: comparing outcomes in White British and Black and minority ethnic patients

    Is it possible to find out who funded this?
  2. Purple

    "My thoughts about the PACE trial" (January 27) (Lucibee's Blog)

    Would someone please let her know about how "recovery" was defined and that it was theoretically possible to get worse or stay the same and be counted recovered and what the FOI request revealed re. how many people were at the level of "recovery" at the start of the trial. I think this is...
  3. Purple

    ****** !!!!!!!! ****************!!!!!!!!!!!!!!!! Junior version of PACE funded PI Dr Crawley

    I am not. I don't think they would be using them in a way that PWME should use heart monitors - to stay below the heart rate which corresponds to anaerobic threshold, to avoid the destructive effects of aerobic exercise/activity. Since they think ME = deconditioning, I imagine heart monitors...
  4. Purple

    Need referrals for motorized wheelchair

    There is a kind of lightweight foldable wheelchair: http://kdsmartchair.com/ There could be similar models by other manufacturers. I haven't seen this one in real life or tried it out - but it looks interesting: folds into a small piece, much lighter than most wheelchairs I have come across...
  5. Purple

    BACME's new clinical guide to practical management of M.E. for healthcare professionals

    This is so amusing. Or rather it would be amusing - if some irrelevant lay person with no training in medicine would be saying this to their friend. It is a lot less amusing when people saying this are recommending healthcare policy concerning hundreds of thousands people with a crippling...
  6. Purple

    Question: Is ME/CFS the most common disabling illness in the prime of life?

    This is the source: http://www.tymestrust.org/pdfs/dowsettcolby.pdf Page 4 - point 7b
  7. Purple

    Is Anyone Else Scared of Rituxan?

    I agree with this (though I try not to act as if showing them up!) - though I understand that it is difficult to do for PWME and in a just world, it should not be down to patients to educate their doctors, especially in something as self-evident as ME being a serious disease affecting people's...
  8. Purple

    Chronic fatigue syndrome and myalgic encephalomyelitis: towards an empirical case definition (Jason)

    Exactly... and not just healthy people, some medical professionals might think the same way.
  9. Purple

    Exercise and CFS: Interview with Prof. Trudie Chalder

    The UK state benefits system functions mostly on a means-tested benefits basis whereby financial need for benefits is assessed by strict rules - and the only disability benefits that are not means-tested at the moment are Disability Living Allowance (DLA) (being replaced by PIP now) and...
  10. Purple

    How does a homebound person shop for a new mattress?

    This would be my approach too but without trying the mattresses out as I cannot go out. I ended up getting a mid-range mattress from a mid-range brand (not too expensive but good enough quality so that is doesn't start falling apart in a year or two), knowing that the mattress would likely not...
  11. Purple

    Creating a Surplus

    Interesting. It's exactly the opposite for me. Doing even slightly more = sleeping and insomnia is infinitely worse and more intractable. And brainfog is the first symptom to improve when coming back from a crash.
  12. Purple

    Leeds and West Yorkshire CFS/ME clinic

    "There is no specific single medical treatment for CFS/ME and although many different treatments have been suggested few have withstood rigorous trials." Seriously? They say this in writing? And with a straight face? (presumably) The only repeated trials (hesitating here to say 'rigorous')...
  13. Purple

    King's College researching what?

    It costs someone being employed to do this and the opportunity cost of not doing something else.
  14. Purple

    KCL job ad: "to develop a novel CBT web based intervention to prevent the onset of chronic fatigue"

    So... they don't know for sure (or care very much) what causes the acute state but they want to prevent the chronic state (again - they don't know what causes the chronic state... and by their own conflicting 'research', it would be a result of pretty much every and at the same time no...
  15. Purple

    Poll: Which name is better: Chronic Fatigue Syndrome or Systemic Exertion Intolerance Disease?

    I realise this was probably a rhetorical question - but in my case, all neurologists I have seen in various stages of being ill treated me with respect and acted as if I had a serious disabling disease *with* neurological components that they felt should be in their remit to treat, they then...
  16. Purple

    Poll: Which name is better: Chronic Fatigue Syndrome or Systemic Exertion Intolerance Disease?

    Lots of time spent on talking about wording... do these 'researchers' realise that many languages have the same word for 'disease' and 'illness'?
  17. Purple

    The Hornig/Lipkin cytokine study is out! Let's light up the internet with calls for biomed research!

    Something that search engines like and seem to respond to quickly is 'being social' - so it is always good to share the good articles on Facebook, Twitter, Google Plus, retweet and repost, even click 'Like' or favourite a tweet when someone else shares the good articles on social media.
  18. Purple

    A Balanced View of The Lightning Process

    This caught my attention (the bolded part). I am severely ill (essentially bedbound, in a dark room) but I don't have these thoughts that everyone with ME *supposedly* has. I get frustrated by the limitations imposed by being so ill and/or by the some of the symptoms - but only rarely though...
  19. Purple

    WSJ: More Evidence Found of Biological Basis to CFS

    Good headline from the WSJ :thumbsup: - just like headlines should be
  20. Purple

    New York Times Op-Ed: A Disease Doctors Refuse to See/CFS needs effective treatments, J Rehmeyer

    Some would be calling an ambulance and assembling the family for a last goodbye as they would think they must be dying when feeling so incredibly ill with their body failing so catastrophically. For us, it's just Thursday.
  21. Purple

    The Lancet (UK) editorial: "What's in a name? Systemic exertion intolerance disease"

    Plus, if you are an editor in one of the top ranked medical journals in the world, you should think VERY carefully before propagating *opinions* that can potentially harm patients. With great influence comes great responsibility.
  22. Purple

    What do you think of the IOM's new name for ME/CFS? VOTE!

    Thank you. So if neuroinflammation is a new term, it may not have been around in the 1950s? In the 1950s when the name for ME was coined, based on observations of symptoms pointing towards the CNS being inflamed following an infectious trigger, encephalomyelitis would have made sense then...
  23. Purple

    What do you think of the IOM's new name for ME/CFS? VOTE!

    Yes, this will likely be a problem. I have been asked how to translate 'exertion intolerance' into one of the languages I know and it is impossible to do this without *very* negative connotations (English is a very word-rich language with some terms being very specific... which is not always...
  24. Purple

    Daily Mail - yoga cures myalgic encephalomyelitis

    This would be very interesting to research.
  25. Purple

    Zoe Norris Book - "Chronic Fatigue - A Mystery No More"

    Zoe writes: I wonder if Zoe also checked with the families of the deceased that they would be happy for the names of their loved ones used in the book - especially in view of how vehement Zoe appears to be that ME is not terminal or fatal.
  26. Purple

    Zoe Norris Book - "Chronic Fatigue - A Mystery No More"

    Exactly. And promotion can be free as well via social media.
  27. Purple

    night time nausea

    My experience is that nausea is often part of PEM. Is it possible that maybe you do more than usual during the day and end up feeling sick in the evenings?
  28. Purple

    Upset by pain clinic appt - need advice?

    I hope your pain management course will be helpful but please make sure you know what you would be getting into as any exercise-based programme based on the idea of the pain being caused by deconditioning and fear of movement would likely be detrimental to people with ME who can get harmed...
  29. Purple

    Take part in our Severe M.E. Symposium from home

    To see the PACE trial's analysis and some of the many flaws, please have a look at the Evaluating PACE website: http://evaluatingpace.phoenixrising.me/homepageanim.html Or have a look at the ME Analysis YouTube channel where there are several short videos that show some of the problems with...
  30. Purple

    Fatigue: late night or early morning type?

    This is very interesting to me. I have not experienced anaesthesia myself but when someone asked me to describe in detail how the ME feels for me, they told me: "That sounds very much like the state I was in for the first few hours when coming out of anaesthesia after my operation."