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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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    cortene email jan 2020

    I just came here to see what the discussion was...I was wondering if anyone knew people on the trial... some of the language used in the email sounds speculatively positive...they are laying out a full development roadmap for approval. That said, the timeframe is frustratingly slow...I guess...
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    Chronic fatigue syndrome and the immune system: Where are we now?

    awesome thanks
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    Chronic fatigue syndrome and the immune system: Where are we now?

    mmm doesnt seem to work for me...just hangs...
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    Chronic fatigue syndrome and the immune system: Where are we now?

    has anyone got another lin for this full paper? one above doesnt appear to work...
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    Jonathan Edwards: PACE team response shows a disregard for the principles of science

    thanks for the response - yes that makes sense. This flaw you mention is so fundamental. It seems like from a distance that some of these problems are accepted and ignored perhaps in psychological research...is it held to the same standards as other areas?
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    Jonathan Edwards: PACE team response shows a disregard for the principles of science

    I read and very much enjoyed this article by Jonathan Edwards - thank you for writing it It is funny to see how the methodology of some psychology research like this wilts under the proper scientific scrutiny used by eg immunologists... I came on here to ask a question to Jonathan if he is...
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    Brave Sir Prof Wessely discusses death threats 29th March 2017

    thats very sad...I might understand someone in a lower position keeping quiet but once someone gets significant standing, if the science is bad, they should speak out about it - and be applauded for it...
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    Brave Sir Prof Wessely discusses death threats 29th March 2017

    Thank you Jonathan Edwards. THANK YOU!!! If only there weren't more like you prepared to speak out. Is it coincidence that the most vocal advocates such as yourself and Malcom Hooper are retired?...are people in the establishment concerned about speaking out against these people?
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    Something different: Apparent real recoveries from Toby Morrison's CFS Health Centre in Australia

    I have tried a lot of the 'Guru' type treatment programs and Toby Morrisons is my least favorite...that includes: Optimum Health Clinic Reverse Therapy Mickle Therapy Lightning Process Gupta Program ANS Rewire On PR they are all unpopular but I think some of them have some value for a...
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    Rehabilitative therapies for chronic fatigue syndrome: a secondary mediation analysis of PACE trial

    thats the one thanks... is it just me or is it noteworthy that we are at the stage now where they have backtracked so far from the initial hypothesis they are publically stating they are NOT saying that...yet still running an expensive studies and evaluations developed on the basis of the...
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    Rehabilitative therapies for chronic fatigue syndrome: a secondary mediation analysis of PACE trial

    nice comment... can anyone remember the location of the response from Chalder re the backlash following press release - where she (I think) said something upon the lines of 'its understandable that CFS patients fear exercise due to their symptoms'?
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    Rod's back! Coverage in The Spectator, 2nd November

    did she specify which bit of abuse she found intolerable? I mean did she get nasty emails or was it just the criticism...or Coyne unfortunately using the word 'bitch' (when he doesnt even have the illness)?
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    UK: MEA calls for GET & 'false illness beliefs' CBT to be ditched as primary treatments for ME

    I cant believe this...I wish I had not read it at this hour...
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    PACE Trial team won't release data they've already published in graph form

    What values are the Y axis?
  15. C

    Breakspear Hospital - worth trying?

    can you share a bit more? why for both?
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    Breakspear Hospital - worth trying?

    Someones offered to pay for me to go there - whats the feedback on this place? Im loathe to try things that are pointless...I hate spending energy and getting my hopes up for nothing...
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    'Harassment' of researchers...

    yes this is basically what has happened it seems to me. Its appauling how glib Wessely can be and how he often speaks about researchers being put off - when his psychogenic model put off researchers the most and incited most of the abuse in the first place. Yes I agree. Its a pleasure to be...
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    'Harassment' of researchers...

    But isnt it time that current ME researchers, scientists and psychiatrists spoke out against the Wessely school directly instead of the appeasement? For example the PACE trial - how could a whole community of scientists allow that to remain with the status it has? I absolutely do not condone...
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    'Harassment' of researchers...

    great post thanks bob - basically explains my concerns more eloquently than I could...
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    'Harassment' of researchers...

    thanks for your answer. yes sure - Im asking in order to hear what the story is from anyone in the patient community who knows about it. I am concerned to be honest of the patient community being silenced or controlled by claims of harassment against researchers when they are trying to defend...
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    'Harassment' of researchers...

    thanks - which other researchers?
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    'Harassment' of researchers...

    Im curious about two points in this saga 1. Have any researchers apart from Wessely school reported being subjected to harassment? 2. What was the true extent of the harassment?
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    "Methological Errors in Medical Research" (1990) by Bjorn Andersen (mini-review of book by me)

    good effort. Question is - have you been able to apply any of its content to ME studies? Did anything come up with regard to some of the unpopular studies such as PACE?
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    Chronic Fatigue Syndrome: Right Name, Real Treatments

    if that is the case they really should be speaking out - because the propagation of this fallacy is doing serious damage not only to patients but also psychiatry and as you say CBT...
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    Neuroinflammation in Patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

    thanks - yes it makes sense - I replied on the other thread. http://forums.phoenixrising.me/index.php?threads/new-name-for-me-cfs.35440/page-2#post-557309 I suppose it makes sense why the ME community has received a bit of a short shrift (anecdotally) from neurologists - because they may see a...
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    New Name for ME/CFS

    Hi Dr Shepherd. I regret you having to retype something that you may have had to explain before. Please feel free to link me to a past post if thats easier. Ok I think I see the situation more clearly. I did not realise the extent of severity inflammation required in order to justify the term...
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    Neuroinflammation in Patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

    maybe they should spend that $1m on finding out what the illness is before they try again to rename it?! ;) In fairness the rest of the report is excellent... but lets not forget many people around the world refer to ME which is inflammation of the brain and spinal cord...so in many areas its...
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    What do you think of the IOM's new name for ME/CFS? VOTE!

    I totally agree. I would not use this term myself. I stick with ME. There is evidence of neuroinflammation now. Why dont they replicate the study and forgo renaming the illness until they actually put some real money into research and find out!
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    Neuroinflammation in Patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

    Neuroinflammation in Patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis http://jnm.snmjournals.org/content/55/6/945/F3.expansion.html Hi All Im writing this due to the recent IOM suggested name change to SEID. I guess they decided to change the name due to lack of evidence of...
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    What do you think of the IOM's new name for ME/CFS? VOTE!

    Hi Dr Shepherd Thanks for your response on this. I saw your piece in the ME Association site. I noted your comments about no robust evidence for inflammation. Is this because the japanese study is too small? Or were you suggesting that the inflammation seen there may be due to other factors? Im...