1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in a 2-Part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS....
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New Research to Explore Role of Online Peer Support on Phoenix Rising Forums

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jul 22, 2013.

  1. Esther12

    Esther12 Senior Member

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    I feel pretty put out - no-one wants to use my posts in their research!

    Peggy sue, I was just talking to someone else about the danger of speaking casually in a way which can be taken as instinctive anti-psychiatry. When I was first posting here I'd always try to be clear about distinguishing between different approaches to CBT, different psych models, etc. As I got more used to the cultural norms here, it was easy to slip into writing more casually on the assumption that people here would understand me, and that if there was any confusion, I could clear it up by discussing it.

    I do sometimes needlessly detail specific criticisms of, for example, the way in which results from PACE were presented, just to avoid making general criticisms that cannot be checked. It is an unnatural way of writing though.

    It is hard to predict how one will come across when there seem to be so many prejudices about CFS patients and their concerns.
     
  2. roxie60

    roxie60 Senior Member

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    ROTFL
     
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  3. roxie60

    roxie60 Senior Member

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    :lol::lol::lol:;)
     
  4. WillowJ

    WillowJ Senior Member

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    is there a survey somewhere?
     
  5. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    The OU normally killed all animals at the end of educational experiments (and of course research ones, which is standard).

    When I was studying, 'Biology: Brain and Behaviour' included rats and day-old chicks.

    Nothwithstanding the repeated insistence of Heads of Biology that biology students had to have hands-on experience in animal experiments to be biologists,

    • I got my degrees without such experiments :)
    • The OU no longer has animal experiments in education! :)
    Sorry - we've gone rather off-topic! :redface:
     
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  6. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I feel a sub-text there - something like "You had better get it right, or else..." :D
     
  7. Bob

    Bob

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    I don't think there is yet. I think the researchers are currently exploring the forum.
     
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  8. peggy-sue

    peggy-sue

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    I think Esther has summed up my reservations very accurately - so I'm quoting your post here and now Esther.:hug:

    "@Peggy sue, I was just talking to someone else about the danger of speaking casually in a way which can be taken as instinctive anti-psychiatry. When I was first posting here I'd always try to be clear about distinguishing between different approaches to CBT, different psych models, etc. As I got more used to the cultural norms here, it was easy to slip into writing more casually on the assumption that people here would understand me, and that if there was any confusion, I could clear it up by discussing it."

    I do hope Anna is reading this. I think it's an important point.
     
  9. Bob

    Bob

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    Yes, I think a lot of us are casually disparaging towards 'psychiatrists', and fail to clarify exactly what we mean. We have got into discussions on the forum previously, about our failure to clarify what we mean. Our comments need to be interpreted in the context that they are meant. We all know what we mean, but others who are not aware of the history of ME, will not know what we mean. I try to use the term "psych-lobby" (psychiatric lobby) which refers to those who work within the field of ME/CFS who aggressively push the (unproven) hypothetical model of illness that defines ME/CFS as a maladaptive cognitive-behavioural disorder based on fear, and an avoidance of exercise, leading to deconditioning. The theory is that the illness can be treated and 'reversed' with cognitive therapy and exercise therapy. There are so many reasons why ME/CFS is not deconditioning. For example, some of us lead semi-active lives, and some of us are able to do limited exercise daily, but still we are ill. And we can have sudden and severe relapses, which clearly are not the result of 'sudden' deconditioning. Relapses are a result of the symptom of 'post exertional malaise', which is a delayed and prolonged adverse physical reaction to minimal exertion that is not relieved by rest. And then there's the results from CBT and GET research which prove that CBT and GET make no difference to physical disability, and very limited difference to self-reported symptoms. But when we challenge the cognitive-behavioural model of illness, we are accused by the psych-lobby of being prejudiced against mental health disorders. This isn't the case, of course. Some of us have experienced mental health separately to the ME/CFS, such as depression and anxiety, and we have no problem with them being labelled as mental health issues, because that is an appropriate label. ME/CFS is, of course, categorised as a neurological illness by the WHO and the UK government.

    The following quote is from a post that was part of a conversation between myself, and a visitor to the forum with a professional psychological background, who wasn't happy with our apparent generalisations re psychologists and psychiatrists. I explained to the visitor that we are guilty of too often using casual language in relation to psychiatrists, and that none of us actually have bad feelings towards psychologists and psychiatrists in general. It is only the psychiatric lobby involved in ME/CFS whose work we strongly disagree with, because we believe it is damaging in many ways:

     
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  10. Esther12

    Esther12 Senior Member

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    Also though, I see no real reason to assume Anna did not already understand this - we don't know the context in which she thought the quote would be useful. Their are unfortunate prejudices about CFS patients - but I'm sure that us CFS patients can also be unduly paranoid about being misrepresented by researchers!
     
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  11. peggy-sue

    peggy-sue

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    " but I'm sure that us CFS patients can also be unduly paranoid about being misrepresented by researchers!"
    Exactly!
    That was why I thought it would be a good idea to discuss it - I'm tied up in knots - it can be hard to untangle how much reservation is due to which different parts of my personal motivations behind it.
     
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  12. Bob

    Bob

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    If you're not comfortable with a quote being used, then I think you should just go with those feelings, then you won't regret anything later. It would have been easier for you to make an informed decision if you had been provided the context in which your quote was being used.
     
  13. Esther12

    Esther12 Senior Member

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    Although I guess that could make it harder to do what the researcher felt was a balanced piece of work.
     
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  14. peggy-sue

    peggy-sue

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    If it were being used to demonstrate the sort of mental and linguistic short-cuts we do use when talking with other PWME that could be used to misrepresent us if taken out of context, that would be grand.

    (and now, I need a strong cup of coffee after having managed to cobble such a long sentence together and double and triple check that I am saying what I hope to be saying....:cautious: )
     
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  15. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I'm not - I'm just rationally paranoid! :snigger:
     
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  16. peggy-sue

    peggy-sue

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    It was Peter Rice (who I have mentioned before as the lovely psychiatrist who helped me beat the booze) who gently told me;
    "You are not paranoid. They ARE out to get you."
     
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  17. alex3619

    alex3619 Senior Member

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    Context is everything. There is a shared context for most of us in this and related communities, and we are dealing with an area in which ambiguity and redefinition abound. For example, when we discuss CBT in the context of ME, it has only superficial resemblance to CBT used to assist in other disorders. Indeed, I would have never consented to CBT for ME, yet I have undertaken CBT for stress management (back in the 80s when there was really only one kind of CBT).

    In terms of the PACE trials and ambiguity, a patient can be simultaneously severely disabled, normal, and abnormal. If that isn't ambiguity I don't know what is. Of course this can be defended on the grounds that these are technical and specific definitions, but the problem is that most people will not know that, including most doctors and casual readers. So they use standard definitions a lot I suspect, and derive entirely the wrong message. The concern with many of us is that this is deliberate, and a way of promoting their research via distortion and rhetoric and not evidence and reason.

    On paranoia, if you have an evidentiary and rational basis to think people are working against you, its not paranoia. Its a realistic appraisal. This does not necessarily mean a conspiracy though. If a DWP work assessment goes against a disabled person in the UK, while there are undoubtedly deep political shenanigans going on at upper echelons, its highly likely that the staff from DWP are not in any conspiracy ... but they are still working against the interests of that disabled person if the system is flawed, the assessment is flawed, and medical history is ignored.

    A lot of what I write is embedded in context. While I often take care to disambiguate or define context, on the fly I usually wont do so, and sometimes I don't get that disambiguation and context definition right. This is a very difficult area, and it always pays to ask people what they mean. Most are happy to explain.

    While I forget the details, I have many times got into long and complex debates with other patients, arguing various points until suddenly, hours later, we realize we have the same viewpoint but the language is getting in the way. If this can happen with people who are already aware of many of these issues, how much easier is it to happen with people coming from completely outside the area with little background knowledge?
     
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  18. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    and sometimes brain fog appears to reduce our IQ and vocabulary by about 50%, so things just don't come out right!
     
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  19. Bob

    Bob

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    You missed a couple: Severely disabled, substantially physically impaired, abnormal, normal and recovered, all at the same time!
     
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  20. alex3619

    alex3619 Senior Member

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    Oh, MeSci , only 50%? I am completely jealous! :eek::devil::alien::ill: (;) ) At my worst I have no vocabulary ... it doesn't exist and communication is impossible. Fortunately that is only a little of the time, and not at all the median experience. At my best though, again very rare, my language skills are way beyond what they are now.
     
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