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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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  1. A

    ME patients protest coverage of threat allegations

    So that means that an FOI request - if experienced as harassment or threatening in some way, is. And it can't be argued with.
  2. A

    ME patients protest coverage of threat allegations

    But this means it's subjective, and it implies any person can cry 'harassment' and we are all supposed to swallow that without question. Obviously people aren't going to do that. They aren't masochists. I can't see anything like that on it.
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    Simon Wessley replies

    I thought Horace was using the term projection to mean as a rhetorical device rather than a psychological response.
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    Lady Mar writes to Prof Wessely

    Oh. But that letter seems pretty clear on what those signatories believe. I'm following a blog that you and Angela Kennedy are commenting on at the moment where she has shown the whole letter is actually devoted to calling that IOS article (including The COM's comments) harassment, false...
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    Lady Mar writes to Prof Wessely

    What correction was that?
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    Professor Simon Wessely says he is misunderstood

    I don't think discarding history is the answer here. The quotes I'm seeing here are useful because they establish a pattern of belief and behaviour that leads us to understand why we are still seeing the same old beliefs, in a new dress. The historical evidence shows how the dress has changed...
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    ME: bitterest row yet in a long saga

    Care to give a few examples?
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    ME: bitterest row yet in a long saga

    But has she/he not self-identified as female? May I ask how you know she is a man? (Ok this is getting surreal with the gender hopping)...
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    ME: bitterest row yet in a long saga

    That's a very small amount of 'evidence' there though, is it not? This is representative of that forum only, anonymous posters whose gender people may not be able to ascertain for certain etc. It does not pass the adequate evidence test for female approval of use of the c-word, even considering...
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    ME: bitterest row yet in a long saga

    But do you not accept that the use of that word against women is seen as particularly offensive? Can you point to a generally equal use of terms for male genitalia on that thread against either women or men there? How many times has that woman been called a C word, compared to other men on there...
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    ME: bitterest row yet in a long saga

    Whether other members on that forum do not like that self-identified female poster is not an excuse for that use of a 'violence' wish against her or Mar. It is both hypocritical and misogynist. The frequent use of the C-word against that poster is not woman friendly either. I don't share your...
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    ME: bitterest row yet in a long saga

    But gender IS an issue here. I'm trying imagine this guy saying that about two men, and I suspect it would not happen. It takes place in a context of desired violence against women. This is not usually acceptable in reasonable discourse because it is sexist and misogynist. It is advocating...
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    ME: bitterest row yet in a long saga

    I am pretty sickened at the casual misogyny accompanied by the wish to do violence first and foremost. I would hope everyone would be.
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    ME: bitterest row yet in a long saga

    But we are talking about the wish to do violence against a woman here Firestormm, being treated as a fair comment. Are you not shocked at that? Especially when we consider how ME sufferers are being accused of intimidation and threats etc.
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    ME: bitterest row yet in a long saga

    This is shocking in its sexism and expression of wish to do violence, especially within the context of accusations of intimidation by big bad ME patients allegedly bullying scientists. Firestormm and Barb, I have to ask: aren't you shocked by this?
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    Professor Simon Wessely says he is misunderstood

    Is not ME or CFS diagnosed by doctors? Where have these parents unilaterally diagnosed ME/CFS?
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    Professor Simon Wessely says he is misunderstood

    Firestormm, the good people over on Bad Science, and Wessely himself, I would say are indeed pretending these comments are benign and just misunderstood. The comments are not benign. If you look at the full context of what is written, the whole articles, the comments are really not benign at...
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    Professor Simon Wessely says he is misunderstood

    Are Are you able to show exactly where someone told you it was a documented fact that Wessely threw a child in the swimming pool? Of course - the facts of that matter look very bad for Wessely as well, no? It looks that - whatever some people might be getting wrong - the 'context' of...
  19. A

    Professor Simon Wessely says he is misunderstood

    I don't think he is doing that at all. He's showing how difficult it is for ME patients, even when they do use rationality to explain the problems, which is a hell of a lot more than some of you seem to think, towards audiences who are not taught to be rational anyway, which is most human...
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    Simon Wessely wins prize for "Standing Up For Science."

    That the relevant medical literature describes ME/CFS patients in dysphoric terms (or any patient given a psychogenic diagnosis).
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    Simon Wessely wins prize for "Standing Up For Science."

    Angela Kennedy writes about this comment, and the context in which it was written, in her book, especially around Wessely's support for CFS being equated to the term neurasthenia- which he even knows historically generated 'disgust' for the patient. She devotes a whole chapter to exactly how...
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    Cross Party Group on ME

    That does seem to be the point he is making. As far as I know there is not even any research showing ME patients more likely to complain then other patients (formally or in forums), even if 'one' might think they have more reason to, because of the way ME patients are treated in the UK...
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    Cross Party Group on ME

    I was thinking about the type of questions that might be asked by 'one' about the 'perspective' of ME sufferers who report bad treatment by doctors. Unfortunately IVI hasn't actually disabused me of my notion that those are the questions he might be asking. There's also lot of assumptions...
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    Cross Party Group on ME

    I see. So such questions will inevitably be along the lines of: 'Are you imagining 'bad' treatment when it's actually brilliant and supportive?' 'Are you a negative person for whom nothing is good enough?' What other questions should be asked about the 'perspective' of that 'one patient...
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    Pemberton: Botched tests deny the disabled their benefits

    He had to do something to try and redeem himself after the last week's fiasco.
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    Why few dare tackle the psychology of ME

    Of course, one immediate problem with that hypothetical goal would be the potential for taking up of any increased research funding by psychiatrists. This shows how difficult it would be to find across-the-board agreement even for a goal like that.
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    Why few dare tackle the psychology of ME

    Yes- your perspective here is your own and not representative of others, and one I don't agree with. I think you use odd analogies here that don't make sense. And there are many aspects to coping with being a downtrodden group which you are wrong to treat as some sort of glorification of said...
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    Why few dare tackle the psychology of ME

    That is very strong language. But I don't understand what you mean. Where has ME/CFS been conflated with racism and bigotry, for example? Who is in a Millwall FC bunker? How do you know people commenting have only made things worse? Where is the orgy of self-congratulation?
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    Why few dare tackle the psychology of ME

    You are entitled to your opinion of course (which I don't agree with), but from what I see she's very knowledgeable about strategies and use of language, probably related to her field of expertise. I think she's effective, and I wonder how other people would feel about their advocacy efforts...