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We are 'b****ards who don't want to get better'

Discussion in 'Action Alerts and Advocacy' started by Min, Dec 29, 2011.

  1. Min

    Min Senior Member

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    http://www.implementationscience.com/content/pdf/1748-5908-6-132.pdf?forumid=331851 (page 17)


    (published Dec 22nd 2011)

    This is a quote about M.E. patients from a supervisor of the UK Medical Research Council funded FINE trial, in which nurses were brainwashed to believe that the illness (which has always been classified as neurological, and never as psychological) was somehow a result of false illness belief and deconditioning. The nurses were then sent into unsuspecting patients homes to 'cure' them with graded exercise and cognitive behaviour 'therapies'.


    the nurses then had the audacity to blame the unreasonable patients for not recovering! Can you imagine the outcry if nurses had been sent out to sufferers of other neurological illnesses e.g. MS. Parkinson's etc, to peddle their dangerous nonsense, and then returned to call the patients 'b***tards who didn't want to get better'?




    http://www.theoneclickgroup.co.uk/d...Experience Courtesy of Dr. Alison Wearden.txt
     
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  2. Valentijn

    Valentijn Activity Level: 3

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    From what I read, it sounds like the Supervisor was reporting a problem with the way nurses thought about the patients, as a result of the patients opposing the treatment. The quote was a generalization of the attitude, not an actual quote of what anyone said.

    Of course, Supervisor still thinks the patients are wrong, but it sounds like it's the nurses that are specifically being criticized in that section.
     
  3. Snow Leopard

    Snow Leopard Senior Member

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    I think the big lesson is they learned that the initial approach that they were told to use was wrong. Supportive listening is helpful for anyone with a chronic medical condition, along with pacing, better sleep and so forth. What the patients didn't like is the fact that people who had no experience with CFS were acting as if they could 'fix' patients and they'd simply be on their way after the treatment (like in primary care...). Pragmatic Rehabilitation is only useful if the person has the physical functioning to improve their activity level, which is less likely in the more severely affected patients that were in this trial.

    It is not about ME patients, they would have had very similar experiences with RA, MS etc. These difficulties are par for these therapies, regardless of the reason for the treatment. It was perhaps a mistake to assume that these nurses would have no problems with such little training.

    The anger only arises when they are engaging incorrectly. The for Simon Wessley, who recently portrayed himself as a 'victim', when in reality he has failed to engage with the community and actually listen to what they have to say and make the associated changes to his attitude.
     
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  4. Enid

    Enid Senior Member

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    Well SW and the psyches are so embedded in the medical profession here it's little wonder they lead to confusion in their ignorance for everyone else in medical care. Correction well on the way now in real science findings. Watch him and his ilk having to shift.
     
  5. undcvr

    undcvr Senior Member

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    Why do patients have to learn to cope with it ? I don't understand the ignorance of this statement at all. Many doctors are at the point where they are full of hubris and feel like they have nothing to learn from the patient at all. It becomes a one-way street at their convenience. But remember it is the patient that pays for their bills. Why do we have to put up with this ? They take our money regardless of whether we get any better or not. Not a shred of conscience from continuously sucking us dry. Why do patients have to put up with this and learn to cope with it ? I don geddit.
     
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  6. Esther12

    Esther12 Senior Member

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    Not much discussion of the fact that the therapies were found to be pretty useless, with no significant difference between PR and Listening, which would seem to indicate that the claims being made about the importance of deconditioning were just quackery, and patients were right to angrily reject those promoting them as a part of evidence based medicine.

    The entire paper seems to be written on the assumption that the treatments being given to patients were effective, reasonable and evidence based. Given their own poor results, that seems like something of an over-sight.

    This is the only bit they have considering the impact of the poor results from treatment (I should have pulled out some of the misleading claims about efficacy... but there were too many!):


    If we had a detailed explanation for the symptoms of CFS, then that would be quite a medical breakthrough. Sadly, some quacks think that we do, and because of this are given power and authority over patients.
     
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Have these so called scientist never seen the many studies showing nk cell dysfunction which is the most common abnormality in cfs/me. NK cells kill viral infections and cancer cells. Do they just not want to belief this science, it seems pretty obvious why cfs/me patients dont feel well.

    Heres a few for them to read: There are a surprisingly large number of human natural killer (NK) cell deficiency states that provide insight into the role of NK cells in defense against human infectious disease. Many disorders associated with NK cell defects are caused by single gene mutations and, thus, give additional understanding concerning the function of specific molecules in NK cell development and activities. A resounding theme of NK cell deficiencies is susceptibility to herpesviruses, suggesting that unexplained severe herpesviral infection should raise the possibility of an NK cell deficit. http://www.ncbi.nlm.nih.gov/pubmed/12505527

    Results: Compared to healthy individuals, CFS/ME patients displayed significant increases in IL-10, IFN-g, TNF-a,
    CD4+CD25+ T cells, FoxP3 and VPACR2 expression. Cytotoxic activity of NK and CD8+T cells and NK phenotypes, in
    particular the CD56bright NK cells were significantly decreased in CFS/ME patients. Additionally granzyme A and
    granzyme K expression were reduced while expression levels of perforin were significantly increased in the CFS/ME
    population relative to the control population. These data suggest significant dysregulation of the immune system
    in CFS/ME patients.
    Conclusions: Our study found immunological abnormalities which may serve as biomarkers in CFS/ME patients
    with potential for an application as a diagnostic tool.
    http://www.translational-medicine.com/content/pdf/1479-5876-9-81.pdf

    Chronic fatigue syndrome (CFS) is a specific clinical condition that characterises unexplained disabling fatigue and a combination of non-specific accompanying symptoms for at least 6 months, in the absence of a medical diagnosis that would otherwise explain the clinical presentation. Other common symptoms include headaches, myalgia, arthralgia, and post-exertional malaise; cognitive difficulties, with impaired memory and concentration; unrefreshing sleep; and mood changes. Similar disorders have been described for at least two centuries and have been differently named neurasthenia, post-viral fatigue, myalgic encephalomyelitis and chronic mononucleosis. Recent longitudinal studies suggest that some people affected by chronic fatigue syndrome improve with time but that most remain functionally impaired for several years. The estimated worldwide prevalence of CFS is 0.4-1% and it affects over 800,000 people in the United States and approximately 240,000 patients in the UK. No physical examination signs are specific to CFS and no diagnostic tests identify this syndrome. The pathophysiological mechanism of CFS is unclear. The main hypotheses include altered central nervous system functioning resulting from an abnormal immune response against a common antigen; a neuroendocrine disturbance; cognitive impairment caused by response to infection or other stimuli in sentient people. The current concept is that CFS pathogenesis is a multifactorial condition. Various studies have sought evidence for a disturbance in immunity in people with CFS. An alteration in cytokine profile, a decreased function of natural killer (NK) cells, a presence of autoantibodies and a reduced responses of T cells to mitogens and other specific antigens have been reported. The observed high level of pro-inflammatory cytokines may explain some of the manifestations such as fatigue and flu-like symptoms and influence NK activity. Abnormal activation of the T lymphocyte subsets and a decrease in antibody-dependent cell-mediated cytotoxicity have been described. An increased number of CD8+ cytotoxic T lymphocytes and CD38 and HLA-DR activation markers have been reported, and a decrease in CD11b expression associated with an increased expression of CD28+ T subsets has been observed. This review discusses the immunological aspects of CFS and offers an immunological hypothesis for the disease processes.
    http://www.ncbi.nlm.nih.gov/pubmed/18801465

    INTRODUCTION

    NK cell deficiency syndromes are rare disorders in which NK cells are absent, deficient, or dysfunctional, in the absence of any other identifiable immunodeficiency, genetic disorder, or medication known to affect NK cells.

    The management of patients with these disorders is discussed here. The biology of NK cells, the clinical manifestations of NK cell disorders, and the evaluation of patients suspected of having NK cell defects are presented separately. (See "NK cell deficiency syndromes: Clinical manifestations and diagnosis".)

    OVERVIEW

    Therapy for patients with NK cell deficiency syndromes is largely empiric, due to the small numbers of cases described in the literature. Active infections must be identified and treated aggressively, as with any immune disorder. The use of specific therapies is based either on theoretical utility or anecdotal reports of benefit (table 1).

    ANTIVIRAL PROPHYLAXIS

    NK cell disorders are characterized clinically by susceptibility to severe and/or recurrent infection with herpes viruses, including varicella zoster virus (VZV), Herpes simplex virus (HSV) I and II, Epstein Barr virus (EBV), and cytomegalovirus (CMV). There is also a marked susceptibility in some patients to Human Papilloma Viruses.

    Prophylactic antiviral regimens should be tailored to the infectious history of the individual patient. Serologic tests should be performed to determine if an NK cell deficient individual has experienced infections with known herpesviruses. In our clinic, we assess for past exposure to the following viruses:
    http://www.uptodate.com/contents/nk-cell-deficiency-syndromes-treatment

    Theres more out there but this should be enough for them to read up on to start with, how easy is it to find this information????

    cheers!!!
     
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  8. Valentijn

    Valentijn Activity Level: 3

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    He's talking about the nurses learning to cope (with patients thinking the nurses are suffering from incorrect illness beliefs regarding ME).
     
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  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    If the nurses read the above studies they would then probably refuse to try and treat cfs/me patients with exercise then, i reckon. Teach them the correct info from the start and then they might show empathy???

    cheers!!!
     
  10. Valentijn

    Valentijn Activity Level: 3

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    We can only hope :)
     
  11. undcvr

    undcvr Senior Member

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    Actually I knew that, I was just trying to be difficult.

     
  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    this study was part of the FINE trial where they used the Oxford definition.
     
  13. Jenny

    Jenny Senior Member

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    As Valentijn said, the statement that the 'bastards don't want to get better' is what the supervisor thought some of the nurses were thinking - rather good that the implication was that this was an inappropriate belief on their part. It's difficult to tell from the report of this intervention what the nurses had been told about the nature and causes of ME - most of it reads as if the aim was to give support to a group of patients with a chronic illness rather than 'cure' them. But it's worrying that they talk about the 'evidence base' of psychological therapies, without clarifying what the evidence is for.

    I think there are a few good things in this, not least that it highlights some of the difficulties and complexities in trying to provide psychological support for those with chronic illnesses. The study makes it clear that using nurses to provide psychological therapy (if you can call it that) is in no way a simple panacea, and can lead to unanticipated problems.

    Jenny
     
  14. Esther12

    Esther12 Senior Member

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    If it's the fine trial, then it's likely to be similar to (possibly identical too, but I don't think this has been confirmed) the content of the Liverpool leaflet from here: http://forums.phoenixrising.me/show...FS-Clinic-Patient-handout&highlight=liverpool

    It goes well beyond the evidence in over-emphasising the role of deconditioning, and I'm not surprised that 'educating' nurses in this manner would lead to them hating some of their patients when they failed to 'recondition' in the way that would be expected.
     
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  15. Dolphin

    Dolphin Senior Member

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    Yes, I feel one can get a feel for what is involved by reading the Liverpool information. I think that's a very informative thread - which is why I have it in my .sig.

    As well as the material being "hard core" CBT school stuff, the authors involved are pretty hard-core. A lot are also big in the MUS field (lay summary of view: "we're saying we don't know what is wrong with you but you should trust us that we know the best way to treat it is gradually behave like normal")
     
  16. Dolphin

    Dolphin Senior Member

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    (Junk) One of the three reviewers recommended it be rejected

    http://www.implementationscience.com/content/6/1/132/prepub

    After the authors had tried to deal with the reviewer's comment, the reviewer wrote:
    This reviewer had said:
    and
    I think this would have been interesting. Although I can understand why the authors didn't do it as it probably isn't standard practice in this sort of qualitative research:
     
  17. Enid

    Enid Senior Member

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    Well we are not are we Min - forget it (as the ignoramuses scrabble to cover their backs) WE (and science well on the way now).
     
  18. Dolphin

    Dolphin Senior Member

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    All to the best of my knowledge were PR/CBT/GET fans, decreasing the "trustworthiness of the analysis."
     
  19. Dolphin

    Dolphin Senior Member

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    So points aren't supposed to be PR- or SL-specific.

    I think some specific points on them would have been interesting.
     
  20. Dolphin

    Dolphin Senior Member

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    I generally agree with what you are saying esp. the point about "Supportive Listening" not being a sufficient treatment on its own. I think PR could be a sufficient treatment (if the model was correct) but I think the problem is that the model wasn't correct.

    I think the FINE trial participants were supposed to be severely affected initially but this was relaxed at some stage.
    If one looks at the entry requirements, they aren't that restrictive:
     

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