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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. A

    Former triathlete 'faked chronic fatigue to claim millions in insurance'

    It seems Mr Miley has been cleared of faking ME-induced disability. I'm pleased for all of us that the judge has shown such an unusual level of understanding about the condition. https://www.thesun.co.uk/news/4614886/banker-insurance-payout/
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    ALL Countries Please sign the MEA's new petition to NICE:do not classify ME as 'functional'

    I'm trying to pin down the relationship between medically unexplained symptoms and a functional disorder. My understanding is that the first is a case of "we can't find anything medically wrong with you to explain why you're getting the symptoms you say you're getting", while the second goes a...
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    Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating con

    Google tends not to be very good at Latin, but it was fairly accurate here.This word (with various spellings), meaning "dung-heap", was fairly popular as a term of abuse with the early Roman writers of comedy, of whom Plautus was the most prominent. Here's an extract (Act 3, scene 3) from his...
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    For those who attend the UK's Fatigue Clinics: what your therapist is told/believes

    Some psychs would have it that a patient's claim, or even objective evidence obtained by a clinician, that there is "nothing to get you on" is itself evidence that there is something to get you on. Have a look at the research into so-called alexithymia, which, according to clinical psychologist...
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    MEA hear back from NICE about the identity of ‘topic experts’ | 13 August 2017

    Well put, Charles. Unfortunately, I can see the evasive answer coming:... "not chosen because they are psychiatrists but because they are leading experts in the field"... "produced the best evidence available to date"..."error of adopting a dualistic stance"..."ME/CFS is a multisystem...
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    Jonathan Edwards: PACE team response shows a disregard for the principles of science

    I've still got two BBC Micros and a ZX Spectrum in the loft. They were bought in 1982.
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    MEA hear back from NICE about the identity of ‘topic experts’ | 13 August 2017

    I'm not sure how many people have heard of C.S. Lewis' dystopian novel The Hideous Strength. According to a well-known online encyclopledia "the story involves an ostensibly scientific institute, the N.I.C.E., which is a front for sinister supernatural forces... The National Institute of...
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    MEA hear back from NICE about the identity of ‘topic experts’ | 13 August 2017

    "However we consider that the names are exempt from disclosure under 2 sections of the Freedom of Information Act." Has Dr Shepherd or anyone else been told what two sections specifically NICE are claiming exemption from disclosure under? It would be useful to know that at least. Or do we have...
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    Medical Officer for England respond the MEA's petition

    I read “confident that NICE will take the comments...fully into account...” as meaning that she is confident NICE will take careful note of the widespread opposition to the initial decision, will loathe PwME even more than they did before for not doing the decent thing and quietly going off into...
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    Science Media Centre expert reaction to Journal of Health Psychology’s Special Issue on The PACE Tri

    I was a committed amateur athlete before I came down with this illness. I've been fortunate enough to be able to continue with some physical activity since becoming ill. Even though this activity is a fraction of what I used to be able to do when I was well, it's still significantly more than my...
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    Please sign the MEA's petition asking NICE to review the guidelines for ME (CLOSING MONDAY JULY 24)

    That's finite at least, Barry, so might be doable. I take it signatures written by bacteria count.
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    Please sign the MEA's petition asking NICE to review the guidelines for ME (CLOSING MONDAY JULY 24)

    That's a good answer, but I suspect NICE would have a simple explanation for the lack of precedence: namely that ME/CFS is an illness that makes its sufferers uniquely militant in the face of treatment guidelines that don't meet with their approval. Given this, masses of signatures would be seen...
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    Please sign the MEA's petition asking NICE to review the guidelines for ME (CLOSING MONDAY JULY 24)

    Is there some critical number which once reached will oblige NICE to change their minds? I wish there were, but doubt it, unless I've missed a crucial point somewhere about a critical number of signatures on a patient organisation's petition suddenly being able to override NICE's considerable...
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    Bad news to the MEA from NICE: no review considered necessary

    What would concern me more, if I didn't already think the consultation with "stakeholders" was an empty gesture, is how stakeholders' responses are to be weighed. Does sheer weight of numbers for or against change win the day, or do certain stakeholders have more influential voices in the...
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    Did you have any strange 'episodes' before M.E properly took hold?

    Everyone's ME is slightly different to everyone else's. I had some severe injuries prior to getting ME, but don't assume any causal connection between the two. I also experienced a sustained episode (lasting about a week) of extreme and unexplained fatigue and malaise that started during a...
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    If the Norway Rituximab trials are a success - Will it be available worldwide?

    Perhaps I'm less fortunate than you in having no crystal ball, but I'm prepared for anything and would be surprised by nothing.
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    Tiredness Vs Fatigue - Are they being confused, and is that the big problem?

    Sorry, Barry, if I was curt. I agree that we can experience different kinds and/or degrees of whatever that sensation is, or those sensations are, that is/are typically put under the umbrella of tiredness/fatigue. I just don't think the norms of English usage currently permit us to arrive at a...
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    Tiredness Vs Fatigue - Are they being confused, and is that the big problem?

    Right. And where do "weary", "drained', "shattered", "exhausted", "hammered", "knackered" et al. fit in to your allegedly scientific scheme of things?
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    Tiredness Vs Fatigue - Are they being confused, and is that the big problem?

    The question looks more like a linguistic than a scientific one to me. As such, I don't think you'll ever get a definitive answer to it.
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    ME Research UK withdraw from UK CFS/ME Research Collaborative

    Is there an organisation of that name, in fact? I ask with no intention of splitting hairs, but because the acronym NICE I'm familiar with apparently stands, somewhat ineptly and with the kind of vacuous spin you'd expect, for the National Institute for Health and Care Excellence...
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    Naps - what works for you? How many, how long and when?

    This thread, if any thread does, underlines the truth of Iris Murdoch's aphorism: "The world is divided into two sorts of people: those who sleep and those who don't". I've found a very poor correlation between needing sleep and getting it, both when I was well and now. If I ever have a nap...
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    Trial By Error, Continued: CMRC to Virology Blog: “F**k Off!”

    Anyone else see a passing but worrying similarity?
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    Crawley: How to deal with anti-science BRS2017

    I suspect she's there because she's one of the world's foremost experts on how to obstruct FOI requests. That's a marketable kind of expertise, when all's said and done..
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    How any people have found that any or light exercise has helped improve your illness?

    I was a committed amateur athlete before falling ill over four years ago. I know a great deal about how to steadily build up fitness and make gains in performance, if anyone does. I knew a great deal, I should say - because ME/CFS has made a mockery of what I knew before. No matter how many...
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    "Tegan Martin reveals how she works out with chronic fatigue"

    That's fine fighting talk. Whether most readers will make the distinction is another matter. I think we know the answer. Except that the article explicitly refers to it as a "condition".
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    "Tegan Martin reveals how she works out with chronic fatigue"

    The title pretty much tells us what we're dealing with in this latest irresponsible offering from the rag we all love to hate. http://www.dailymail.co.uk/tvshowbiz/article-4427072/Tegan-Martin-reveals-workouts-chronic-fatigue.html "'if I do a 60 minute high intensity workout, I'm exhausted all...
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    Any hope for UK patients going forwards?

    It's not been shown to be effective in Norway yet, but they're hoping to find out the answer with the phase III trial there. I wasn't aware there had been any similar-sized trials to the Norway one elsewhere. What is Dr Bansal basing his assertion on? Or is he simply saying, though not in so...
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    The Nottingham Tool Kit: how the UK is selling ME patients down the river with £200 million for MUS

    "Previous research highlighted the need for a streamlined process of identification of MUS...streamlined diagnosis of MUS by developing methods for estimating the number of patients suffering with MUS using electronic patient records...Morriss developed a search tool ‘The Nottingham Tool’...The...
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    If this is a temporary post-viral fatigue then why aren't I feeling better?

    I'm afraid you've misread what I said. I said "you clearly have a chronic condition of some kind".
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    If this is a temporary post-viral fatigue then why aren't I feeling better?

    If yours doesn't, your doctors will probably start calling it CFS. These are just labels. Nobody knows yet what they are really describing. ME too is a label. After four months of being ill, you clearly have a chronic condition of some kind, but until science can tell you what is going on in...