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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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Lady Mar writes to Prof Wessely

Discussion in 'General ME/CFS News' started by Peter Kemp, Dec 4, 2012.

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  1. Holmsey

    Holmsey Senior Member

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    Please expand, I'm not sure I understand how that can be the whole point, an opposing viewpoint is created, surely the opposing viewpoint must in your mind have a purpose beyond just existing as an opposing view point, if it does not exist simply because an opposing beleif is held and expressed?
  2. peggy-sue

    peggy-sue

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    :alien:
    wot?
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  3. Holmsey

    Holmsey Senior Member

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    You certainly got advice I never got. I'm guessing that at subsequent sessions you'd be given the opportunity to feed back, it was certainly a large part of my participation, it would be good to hear what your therapist said regarding the ice advice, even when healthy it would have hurt me to hold ice for a prolonged period, frankly I'd rather stab my hand with a pencil.
    In any case your reply is kind of out of context with my posting, my posting was made in response to a discussion around patient responsibility, the idea that we can't demand that we're helped and yet refuse advice at the same time, even if we find reasons to dislike the advice. This has to be taken in the context that the clinician is doing what they beleive will help, based upon their own training and guidelines.
    My standpoint is that if everyone engaged and most had the experience that you had and fed this back, then ground support for nonsense and false claims would rather quickly evaporate.
  4. Bob

    Bob

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    Holmsey, I'm interesting in understanding exactly what would you expect to gain from a CBT course?
    I don't understand CBT in relation to CFS/ME, except the type that is designed to address a maladaptive psychological aversion to activity. I only understand CBT in terms of anxiety and depression.
    So what could the other type of CBT offer ME/CFS patients, in terms of coping, etc.?

    Another question is how do patients know which type they are being offered?

    I embarked on a CBT/GET course once, but the therapists were unable to explain to me how I could incorporate GET into my life, as it was so rigid and inflexible. It seemed designed for someone who had unlimited personal care on offer, as if we could design and plan all of our activities purely around a pre-designated few minutes walking each day. I found it utterly inappropriate. No other type of CBT was on offer in my area.
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  5. peggy-sue

    peggy-sue

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    I'm far too fogged up to understand a word of what you're saying, Holmsey. :cry:
    Valentijn likes this.
  6. Holmsey

    Holmsey Senior Member

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    I don't doubt it, I don't think anyone is disputing that SW beleives in the Psyc model of our illness, that's a given, it's whether he's acting from beleif which will eventually be proved wrong or expressing a view that he knows to be false which would appear to determine his character.

    We collectively as sufferers experientially disagree with the above assertions, but do we have for each a counter study, and if so, what has gone wrong that we've ended up with one groups view overarching anothers...failed advocacy.
    In painting a picture of SW the monster it's easy to cherry pick his comments, the final comment for instance is at odds with papers recently release under an FOI request where SW argues for the severity of the illness and for benefits for sufferers. Again to me this suggests there is a difference between what he beleives is good for the patient to know and think verses what is good for the patient in reality.
  7. Holmsey

    Holmsey Senior Member

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    Pain management, being aware of symptom fluctuation so as to spot low points and take appropriate action such as reducing activity levels. You'll also get a check for suicidal tendencies, so from that viewpoint it's a proactive health check. It's talking therapy, if GET is included it's something other than CBT.

    If in doubt, ask, and if at odds say so.

    Great, the more of us that co-operate and give this kind of feed back the less tenable it becomes as the only treatment option. I've said it before, if a third of people were made 'normal' with PACE then one third of 250,000 people in the UK will be going back to work after treatment or the whole edifice will come crashing down. Of course neither will happen if we simply refuse on mass to co-operate. Me, I'm for flooding the clinics, get to the end of CBT/GET, be worse be better but if you're not back to normal ask why not, that's the promise is it not?
  8. Bob

    Bob

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    I'm not interested in SW's character. I'm interested in his research output, and his government advice etc.

    It's possibly legitimate to raise the issue of "failed advocacy", but without the funds, it's impossible to compete with professional advocates of the psyco-social model on an equal footing, as is evident from the history of the illness.

    I agree that comments can easily be taken out of context, but the document that I quoted had no further context, in terms of Wessely's comments. Therefore, his comments were being used,
    officially, at the time, in the context in which they were quoted, whether he intended them to be used as such, or not. He had opportunity to correct any misunderstandings, and he still does.

    I'm not sure what you mean. As Valentijn has pointed out, Wessely has repeatedly asserted that it can be beneficial to the patient to mislead them, or to tell them what they want to hear. This is a very patriarchal and antiquated approach to medicine. It's patronising, and it assumes that the patient is incapable of taking on board honest information, or understanding their own illness. It also seems rather a corrupt way to practise medicine.
  9. peggy-sue

    peggy-sue

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    I can prove I have muscular dysfunction and a strange lactic acid response to mild exercise, my body only does anaerobic stuff, not aerobic.

    But my gp won't let me prove it. He says "such testing isn't available".

    All I'd need is access to the university labs.
    The correct tests are a set second year Life Sciences practical class. I did them before I got ill.
  10. Bob

    Bob

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    The problem with this approach is that, in the PACE Trial, 65% of participants improved in the 'SMC' control group (they reached the threshold of a minimal improvement), simply as a result of natural fluctuations over-time, etc. These patients only received usual medical care, and some information/advice. So a patient might think that they are being helped by CBT but in fact improved naturally over time. In the CBT group (which also included treatment with SMC), 76% of participants improved, in total, and therefore many patients may have thought that they were benefiting from CBT. But in fact, 65% of them benefited from SMC-alone, leaving only 11% that were shown to benefit from CBT. (These are the Chalder fatigue primary outcomes.) It's impossible for patients to understand which part of their treatment is helping them, which is why they carry out clinical trials.
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  11. Esther12

    Esther12 Senior Member

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    Sorry for butting in when I've not been able to keep up with this thread but, I just wanted to insert another Hitler comparison, because I believe that they are always helpful.

    I don't know about that. I think it's entirely possible for people to be genuinely trying to make the world a better place, but to be starting from flawed assumptions about another group of people which serves to lead to them being mistreated. That, to me, is enough to mark someone out as having a dodgy character. I think that lots of odious human beings are genuine in their beliefs, and trying hard to be good people. Osama Bin Laden sacrificed an easy and pleasant life in order to follow the path of jihad. I still didn't like him much.

    I also now think that the spin and manipulation of results around PACE is such that it's almost impossible to assume that the leading figures promoting CBT and GET for CFS do not know that they are misleading people. Combined with the problems Wessely has with honesty to patients mentioned by Bob above I don't think that we need any more knowledge to be able to criticise and condemn Wessely's character.
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  12. In Vitro Infidelium

    In Vitro Infidelium Guest

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    I don’t know what “we've been over this stuff repeatedly” means – certainly I see the same set of fallacies being repeated – I don’t think that repetition makes them ay more acceptable.

    Curer makes a specific proposition: “the psychiatric model of ME is directly responsible for both this abuse and neglect, and the refusal to fund adequate medical research for over a generation.” Which comprises a statement of cause and effect(s) cause = psychiatric model, effect = a) abuse and neglect and b) refusal to fund adequate medical research . It is irrelevant who comes forward with testimony of abuse and neglect, because of itself that testimony can not provide evidence of the causal relationship that Curer is claiming in the case of abuse and neglect, and has absolutely no bearing whatsoever on the issue of research. Without evidence of causal linkage this is all so much story telling , so why should I or anyone else accept it at face value ?
    Even if we accept each other’s personal stories at face value (which is fine in a discussion about how dreadful our lives are) how does that resolve the causal fallacy problem ? We are still left with argument of cause and effect that has no evidence of causal linkage. Anyone is entitled to believe in such a linkage, but propounding it as certain fact demands evidence.
    Who is they ? And what has LP got to do with Curer’s argument ?
    I still see no evidence of well formed research bids being refused . Curer identified the UK, which is what I was responding to, but I’m not aware of any sound proposal made in the US that has been refused funding. The Kerr case is way more complex than a simply issue of funding being turned down. Maybe Kerr was an innocent victim of Institutional politics, but it’s hardly routine for a whole department to get culled and the lead researcher leave her/his profession where there are no departmental failings involved. In any case there is no evidence that any well formed grant bid was refused, and even less that such a refusal was based on some pervading notion of an exclusive psychiatric model.
    Again we are back to causal fallacy, even if your preferred definitions have been ignored, neglected, perverted, or blocked, there is still a lack of evidence of causal linkage between the proposed ‘cause’ and the claimed outcome. I don’t actually know what you mean by the MRC ‘blocking’ anything – the process is for researchers to submit a proposal and the proposal is then peer reviewed. Choice of case definition or disease criteria would be entirely down to the applicant – except possibly in circumstances where the MRC invite applications that meet a particular research criteria.
    Insensitive to what ? Life’s crap, there’s pain and misery everywhere, but just how does that have any impact upon the claim that X leads to Y, and why is it unreasonable to ask for evidence of the claim. In this kind of question I’m not insensitive, I’m deliberately uninterested in solipsism. I have all the experience of illness, pain, financial challenges, unresponsive health care, oppressive state agencies etc, that I could ever need – but none of that provides me with evidence of X (a psychiatric model) leading to Y (abuse and neglect and refusal to fund adequate medical research).
    Beyond that I’m at loss to understand what the issue is – this part of the forum isn’t about providing solace, there are surely enough venues either on PR or elsewhere to facilitate that. Are we really not going to ask hard questions because we all variously feel a bit delicate at times ? As to the ‘blaming patients’ – who, where how ? If I take that claim at face value all I can see is another fallacy, which seems to run “if the psychiatrists aren’t to blame, then it must be patients”.

    IVI
  13. notinfinite

    notinfinite Guest

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    Holmsey

    not looking for any apology, as you rightly say, I took offense and that's my problem - shouldn't be on a forum if you can't take a bit of crap now and then. Your opinion is as valid as mine, not your fault you are wrong.
  14. Holmsey

    Holmsey Senior Member

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    Fair enough, I'm interested in getting well, I can't see how to undo the advice or the research without new research. It strikes me that SW's biggest influence over us now is contributing to a public perception of all sufferers as intolerant, likely barmy, unreasonably angry and occasionally threatening, that IMO effects the likelyhood of the type of research that undermines prior research. My contribution is therefore an attempt to always give forethought to how what I say reflects upon that distorted view.

  15. Holmsey

    Holmsey Senior Member

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    :) take care.
  16. Holmsey

    Holmsey Senior Member

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    Can't you get them done privately and present them back to your GP?
  17. Kina

    Kina Moderation Team Lead

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    Personal stories about being treated poorly by any Doctor (or the medical system) are very important. If hundreds of patients are complaining about the same thing, there is a problem - end of.

    In Ontario, any complaint you have about a Doctor is dealt with by the Ontario College of Physicians and Surgeons. There are complaints of professional misconduct all the time that are based solely on the personal experience that a patient has had with a doctor where there is no objective evidence. Many times a doctor will get off with a slap on the wrist for unprofessional behavior but if more than one person comes forth with the same complaint independently, then it is proof that this doctor needs to be sanctioned more strongly or even have their licence to practice suspended.

    I have had the experience of being told I was merely depressed and that there was nothing else wrong with me. Being dismissed as having some psychological issue and being refused treatment for physical issues is, in short, abhorrent, abusive, and discriminatory and this kind of thing happening on a daily basis to thousands of people with ME, means the system is badly badly broken.

    Personal experience when it comes to the medical system is important. We aren't talking about a medication which you can apply objective evidence for usage, we are talking about the attitudes of the medical profession. How would one go about studying this? Likely by some kind of survey -- would it make a difference if hundreds of patients officially said something via survey rather than just discussing it on a forum? When somebody recounts a personal story and it is dismissed as an anecdote or unimportant because it is just a 'story' that is really insulting to the person who is telling the story and to those who are experiencing the same thing. Pain and nausea are not measured objectively, a doctor relies on a patient to tell them how much pain and nausea they are having and prescribes medication based on this subjective information. They don't accuse a patient of telling a story and refuse to give them a medication because they have not provided any objective evidence. They don't send them away with a referral for CBT either. In the medical world subjective evidence is very important because the subjective report of symptoms guides treatment. It is very discriminatory for a Doctor to give one patient a prescription for pain and nausea relief and not give another patient with pain and nausea a prescription because they have a diagnosis of ME. It all comes down to the Doctors attitude about ME. Where do doctors get their attitudes from -- those that teach them, their peers, published research (Wessely has published a preponderance of research that has affected the attitudes of Doctors).

    I find reading some of the things you have written to be very frustrating because as a population we are sick to death of being dismissed, doubted, psychologically abused, and being offered treatments that are useless and even dangerous and don't address the symptoms. One of the functions of this forum is to be able to talk about personal experiences and it's really hard to have your personal experiences dismissed just because they are subjective. The forums are also a good place to talk about the anger that comes from being neglected, doubted, and dismissed over and over. Nobody should ever dismiss these feelings of anger. Ever!

    Kina
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  18. Holmsey

    Holmsey Senior Member

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    Forget the figures, forget whethere it's SMC or CBT, if someone imporves that's a plus, if they're cured I'll raise a glass to them, but if not then that's the time to make a fuss and ask why?
    Right now the Psyc lobby get to hide their figures behind an argument that we're malingering, that we don't want to get better because we find social advantage in the illness, we let them do that, we assist in their lie.

    My earlier post should have said 250,000, I fixed the original but you'd already quoted it unfortunately.
  19. Holmsey

    Holmsey Senior Member

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    Ok, all fair enough so attack away, but I don't see where it helps us.
  20. Valentijn

    Valentijn Activity Level: 3

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    To the best of my knowledge, most of them (Wessely included) do not say that we're malingering - quite the opposite, they usually attack those claims head-on. Their belief is more along the lines of being victims of a psychiatric disorder where we have an exaggerated perceptions of symptoms, combined with avoidance behaviors. And maybe an unconscious desire to avoid responsibilities.

    We don't "let" them do anything. Many ME advocates, including members of this forum, are very active in trying to disseminate the truth and force them to reveal the figures that are hidden. From reading their reports, this is usually a very frustrating endeavor, with little pay off. It speaks well of their character that they still persist in their efforts.
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