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

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Search results

  1. A

    David Tuller: My brief encounter with Prof Crawley

    and it was a publicly advertised talk with no mention of any restrictions.
  2. A

    David Tuller: My brief encounter with Prof Crawley

    Other than an acceptance that you've understood what the other party would like, there's no agreement to comply here. A court setting is very different where such affirmations will likely be in relation to the threat of a penalty should you not comply.
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    Practical management of chronic fatigue syndrome or myalgic encephalomyelitis in childhood

    PEM with a delay in onset of at least 24 hours or more being the norm is a prerequisite symptom for a NICE diagnosis. Only at the three or four month period should they then look for whether all the symptoms have gone or not to confirm ME or otherwise.
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    Cytokine signature associated with disease severity in chronic fatigue syndrome patients

    https://www.cps.gov.uk/legal/d_to_g/disability_hate_crime/ "Chronic fatigue syndrome is also called chronic fatigue and immune dysfunction syndrome. It describes a serious chronic condition in which individuals experience long periods of fatigue accompanied by physical and cognitive symptoms...
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    Practical management of chronic fatigue syndrome or myalgic encephalomyelitis in childhood

    That sums it up. China has the right idea for people that produce papers like this.
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    Practical management of chronic fatigue syndrome or myalgic encephalomyelitis in childhood

    An increase in symptoms lengthens the illness, makes recovery harder and worsens prognosis, so this is harm caused. Mismanagement is clearly the no.1 cause of an exacerbation in symptoms. Causing harm is a frequent issue in ME when over exertion is not being prevented. Focus should be on...
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    Practical management of chronic fatigue syndrome or myalgic encephalomyelitis in childhood

    "A graded approach to stabilising and then increasing activity (physical and mental) and sleep management strategies are used to tackle the behavioural cycles." Really! :( Perhaps they should read: "Medial prefrontal cortex deficits correlate with unrefreshing sleep in patients with chronic...
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    Practical management of chronic fatigue syndrome or myalgic encephalomyelitis in childhood

    "Postexertional malaise is a core symptom" So she now admits that PEM is a prerequisite. So is this an admission that all the research she's done that hasn't include PEM as a prerequisite needs retracting? What about FitNET? There's no requirement for PEM, let alone the NICE diagnostic...
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    Recording of Esther Crawley inaugural lecture on February 24

    There's an official audio recording of EC's inaugural lecture now available on the Bristol site. https://soundcloud.com/university-of-bristol/fatigue-and-me-a-story-of-research-in-a-controversial-area
  10. A

    MEGA and PAG website update (March 29th 2017)

    Maybe but the real scientists don't need Holgate. They're clearly just going with the flow. They need to grow some and start standing up for the science they know sufferers desperately need. Perhaps Holgate is in bed with someone but those involved with PACE aren't who immediately spring to mind ;)
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    MEGA and PAG website update (March 29th 2017)

    If a 24 hour or more delay in onset of PEM is not usual for the onset of PEM in a sufferer, then the diagnosis doesn't meet with the NICE guidelines. This has been confirmed in writing by NICE. If a diagnosis can't even meet the NICE criteria, then it's certainly not ME/CFS. If Crawley gets her...
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    MEGA and PAG website update (March 29th 2017)

    It would seem from all external appearances, that EC is taking over from Holgate. There's no mention I could see of Holgate involved in the new bid. Is Holgate retiring? On another point... I note MEGA suggest that PEM will be a prerequisite. Without definition, PEM could be a bit of tireness...
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    VIDEO: 2017 Resolutions - ME/CFS & FM Researcher Jarred Younger - UAB

    With connective tissue disorders and pain from between the shoulders up to the back of the head being common with ME and their association with CSF leaks, is it possible that infection and or peripheral immune cells that Younger mentions, could enter the CSF, vagus or brain nerve via...
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    Recording of Esther Crawley inaugural lecture on February 24

    Yes. Got that. Thanks, which is why I added some info in support of the comments made by the person you had concern for.
  15. A

    Recording of Esther Crawley inaugural lecture on February 24

    On the radio, EC quote the biomecial research as small unreplicated studies and aldo that she found them confusing. Besides the fact that not all biomedical studies have been small, she fails to identify that many of the studies, approached from different angles, have lead to the same...
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    Recording of Esther Crawley inaugural lecture on February 24

    It was a public lecture, so presumably they wouldn't mind forwarding them ;) I'll ask round and see if anyone can send me pics. The slide re accusations of 'cyber stalking' quoted paragraphs that were clearly quoted word for word from wiki even with the inclusion of reference to California...
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    Recording of Esther Crawley inaugural lecture on February 24

    I wouldn't like to suggest that CFS can be cured in six months. However, she identifies her clinic as a 'fatigue clinic and I, like many others, believe that she's diagnosing other illnesses for which fatigue is a symptom as ME. Her 2014 paper on PRS does of course, insists on considering PRS...
  18. A

    Recording of Esther Crawley inaugural lecture on February 24

    Transcript as close as I could manage from the audio that was posted... https://www.dropbox.com/s/30sxdaxhd8hcgt9/2017-02-24%20EC%20Lecture.pdf?dl=0
  19. A

    New MEGA study website (30 November 2016)

    Mental health questionnaires just in time for the NICE review. I don't suppose for one minute that people are being straight about MEGA. Funding is already earmarked from what I understand and so hence, I guess, the rush for an I'll thought through application, which is just a formality. Looks...
  20. A

    Cleanliness in between showering

    My daughter uses ones called Fuzzy Brush. They don't look much but once you get used to using them, they can do a reasonable job and the xylitol gets into the gaps the brush can't.
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    Cleanliness in between showering

    Disposable chewable toothbrushes with xylitol on instead of toothpaste can be a useful addition and no need to be by the sink.
  22. A

    Who has tried robot vacuum cleaners?

    I got my daughter a Neato botvac because she was rarely able to manage any movement in her room for more than a minute, let alone additional sensory input from such as even a manual sweeper. With the Neato, it's was finally possible to keep the carpet swept. It isn't good with carpet edges but...
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    POLL: Crimson Crescents In Your Throat? Know Your Coxsackievirus B Titers? ME/CFS Onset After Mono?

    Yersinia is sometimes detected in people with ME. Not sure about it being a trigger.
  24. A

    Petition: Opposing MEGA

    So someone at 30% functional would be recovered at 13 weeks, someone at 50%, 8 weeks. Poppycock. Sounds damn right dangerous.
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    Petition: Opposing MEGA

    Also, when representing joint decisions in MEGA, A4ME's own ideas can be viewed as those of the CMRC even thoughbthey may not be. We've seen how A4ME get away with this in their recent invention of the International ME Alliance. Either all charities have their own representation in MEGA or they...
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    Petition: Opposing MEGA

    They may take decisions agreed by all four to MEGA but I think it's clear they do not hold all the MEA and MERUK's views. A4ME, AYME and Crawley may as well be counted as one unit because they are intrinsically linked IMHO.
  27. A

    Do we think CFS affects the heart or not ?

    I can't say I know anyone without cardiac symptoms of somexsort, so not surprised by the high percentages quoted. Useful info. Thanks.
  28. A

    Do we think CFS affects the heart or not ?

    Dr Cheney, who used echos, stated that his patients had lowrer than normal cardiac output with 30% having an output in the cardiac shock range and the more severely affected, the worse the output. Perhaps it's difficult for a cardiologist without the right knowledge to detect subtle differences...
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    Petition: Opposing MEGA

    @charles shepherd whilst I'm affraid I can not agree with everything you say, I would like to commend you, and Chris Pontin for that matter, on being prepared to discuss the concerns with MEGA publicly. It is quite obvious to most, that those who's methods are contended, do not engage in public...
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    Petition: Opposing MEGA

    Well said Nasim!