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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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    Panel and Q&A after Unrest at Hampshire College, Feb, 2019

    Sorry I am not clear about the above. Is this Ron saying he believes half of patients with ME have EDS or half the patients Kaufman examined for CCI have EDS? Thank you.
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    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    When you say above to Nasim ‘it’s totally fine if you disagree or if anyone disagrees’ are you still implying Nasim is saying she disagrees with getting a MRI? If so, it is clear to me Nasim is not saying she disagrees with getting a MRI to look at possible CCI if symptoms develop that strongly...
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    Posted this in a usually ME hostile "Doctors" only forum

    I have looked up the ICC again and as I thought ICC authors write the criteria should be used for diagnostic purposes and research. With research the authors write, ‘ Classifying patients by subgroups to enable the comparison of patients within the diagnosis of ME may be helpful in some...
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    Help! My alternative Dr. is listening, but needs more Info.!

    This might be of interest to you http://www.drmyhill.co.uk/wiki/A_Regime_for_Antiretroviral_Treatment_of_Myalgic_Encephalomyelitis
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    Posted this in a usually ME hostile "Doctors" only forum

    Thanks for writing this on a doctor’s forum. I thought the ICC authors said ICC can be used as both diagnostic and for research, as they know in the history of ME how diagnostic criteria have ended up being used as research criteria and vice versa?
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    #PwME4ICC Demand US Health Agencies Recognize Myalgic Encephalomyelitis as Defined by ICC

    The issue for me is the SEID IOM criteria have shown in studies by Jason and a recent Norwegian study to bring in other conditions and why I think at this moment in time the ICC criteria are the best we have in identifying a discrete disease, and there can be a degree of flexibility. Of course...
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    #PwME4ICC Demand US Health Agencies Recognize Myalgic Encephalomyelitis as Defined by ICC

    @Neunistiva, you wrote, “Can someone please explain to me how can using IOM criteria select for people who only have depression and not ME/CFS? Depression does not cause PEM, depressed people feel a bit better after exercise” Firstly, PEM is not the same as the distinct post exertinal neuro...
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    MUS, PPS services and IAPT integration into NHS primary care - what's happening across the UK?

    Have I understood it correctly Per Fink’s, Bodily Distress Syndrome construct which is proposed to be renamed Bodily Stress Syndrome in the Primary Care arm will not be listed in the core ICD 11 Tabular list?
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    MUS, PPS services and IAPT integration into NHS primary care - what's happening across the UK?

    @Dx Revision Watch, briefly, am I correct the PCCG committee is a separate committee to the ICPC-2 revision committee? Thank you.
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    Clinical Trial at Brighton/Sussex Hospital

    @Valentijn, sorry I know this is a very old post, but can I ask how muscle dysfunction could effect the brain? Thank you.
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    Dr David Tuller 13th Nov: Trial by Error: the surprising new BMJ Best-Practice Guide

    Not read through comments on this post yet. I am just skim reading the guide now, managed to get a copy, and will try to read properly. I have to say on reading so far I still have many concerns. Yes, the guide does point out there is research coming out that shows metabolic dysfunction and...
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    What are good adjunctive therapies to protect against the adverse effects of antibiotics?

    Good reports on symprove http://www.symprove.com/bioscience/evidence/ucl-study?hcp=1
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    "Unrest" Documentary Reviews

    Thanks Joh for your reply. Sorry crashed and can't type more at mo.
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    "Unrest" Documentary Reviews

    Sorry to hear this. My official diagnosis is CFS but I meet Ramsey and ICC criteria. I view it I have M.E. The blanket statement CFS is not ME not helpful and misleading without qualifier many diagnosed with CFS will meet stricter ME criteria, but crucially not all. The issue is the harmful...
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    "Unrest" Documentary Reviews

    I thought it was a good interview and covered many important points. However, I noticed she skipped very briefly over the creation in the 1980's of CFS which - and does to this day - conflates harmfully the single and non specific symptom fatigue with the disease ME (many people with ME don't...
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    Jen Brea and Unrest make it into the BMJ as an opinion piece

    Thanks @Philipp. I agree the issue of labelling illnesses such as depression, schizophrenia and so on as not physical is ludricious. As is the idea that a person has control over a illness put in the mental health bracket. Mithriel is so right that psychiatry needs to be cleaned up and has done...
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    Jen Brea and Unrest make it into the BMJ as an opinion piece

    That is how I read it @Little Bluestem, nonsense of course that ME is a mental condition.
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    Jen Brea and Unrest make it into the BMJ as an opinion piece

    Typing limited so forgive brevity. I think - if I have understood you correctly - you are conflating the issue of psychiatry as a whole and the particular issue of wrongly characterising ME as a behavioural condition. Stated well from an excellent piece in response to the BMJ article that Tom...
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    New Times article on NICE (mostly good)

    Excellent overview of the history of wrongly conflating M.E with the political construct CFS. Ramsey made clear ME happened in epidemics and could be endemic as well https://www.facebook.com/notes/jerrold-spinhirne/the-ambiguous-term-mecfs-has-become-a-problem-for-research/1527608180644089/...
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    ME/CFS (CFS/ME!) on BBC "Today" Programme NOW - can anyone tune in

    Don't want to listen to show, too ill to cope. So, as expected, Crawley does not acknowledge the abnormal response to exercise in pwme? Was she saying that LP makes patient increase exercise/activity and as exercise reduces inflammation - ignoring opposite in ME - this is maybe why patients...
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    Embargo broken: Bristol University Professor to discuss trial of quack cfs tx

    Understand. I am bedridden 24/7 and can't travel. Really hope you can find someone suitable and could do a home visit.
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    Embargo broken: Bristol University Professor to discuss trial of quack cfs tx

    @anni66. Dr William Weir, London based, as a private option, too far?
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    Charles Ortleb's radio shows on Chronic Fatigue Syndrome

    Montoya interview, especially last 10 minutes, very interesting. Montoya now looking for endogenous retroviruses in untested parts of the body.
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    NHS Bristol on 'Management of somatoform disorders' - read this and weep.

    @RogerBlack, @Valentijn "What is the employment and support allowance work-related activity group? The ESA work-related activity group is for claimants who the DWP consider will be capable of work at some time in the future and who they consider are capable of taking steps immediately towards...