1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
Discuss the article on the Forums.

Psychiatric Theory in practice: Liverpool CF/CFS Clinic Patient handout

Discussion in 'Action Alerts and Advocacy' started by Orla, Mar 25, 2010.

  1. Orla

    Orla Senior Member

    Messages:
    446
    Likes:
    36
    Muscle pain and summary of effects of rest

    III. Muscle Pain

    Muscle pain after exercise is a common experience in CFS and is a result of muscle deconditioning. (p15)

    Summary of the Physical Effects of Rest and Reduced Activity

    5. Prolonged rest can cause visual problems, sensitivity to noise, unsteadiness, dulling of mental powers and feeling hot and cold. (p16)

    7. Fortunately, all of the changes listed above can be reversed by a therapeutic activity programme. (p16)
  2. Dolphin

    Dolphin Senior Member

    Messages:
    6,439
    Likes:
    4,663
    Good point, Hope123.
  3. Orla

    Orla Senior Member

    Messages:
    446
    Likes:
    36
    Chapter 3: Sleep, the Body Clock and CFS

    [Orla - I find it really annoying, and misleading, that they are comparing jet lag to ME/CFS.

    On Page 18 they talk about people not doing their normal routines when they get a virus and this is supposed to be leading to a gradual slipping of body rhythms.

    On page 19 they go on to talk about stress also affecting body clock.]

    Then they talk about cortisol levels.

    [They say this has also been found in shift workers and healthy people who have bed rested for more than 3 weeks.]

    [Orla - i.e. it is a behavioural problem, similar to that seen in healthy people who get into bad habits. They recommend against taking cortisol]

    [They talk about some study where the sleep of healthy people was disrupted so that the healthy people’s sleep patterns were similar to CFS patients (whatever that would be) and they say they got various symptoms including muscle aches and poor concentration. They go on to say..]

    [Orla - so now a little bit of sleep deprivation is like ME/CFS??].


    [orla - So no slacking now. I think they are referring to research done on healthy people, or the general population, not people with ME/CFS.]

  4. Orla

    Orla Senior Member

    Messages:
    446
    Likes:
    36
    Chapter 4: Increased Nervous System Arousal and Adrenaline

    [Orla - They mention hyperventilation on p24 and basically try to put symptoms down to this, including sore throats, muscle spasms, and light and noise sensitivity!]



    [Orla - They list symptoms which can (according to them) be caused by overbreathing, like dizziness, blurred visions, including increased sensitivity to light and noise. Of course there can be other reasons for these symptoms. And then a real gem..]

    [Orla - Of course in ME/CFS many patients have low blood pressure on standing, or unstable blood pressure, problems with blood flow etc. so feeling faint is not the result of stress and they do need to sit down.]

    [now muscle problems are being put down to stress, basically, but don't worry, they haven't forgotten deconditioning]

    [Another example where they are taking something that might apply to the healthy population but using it in a way that makes it look relevant to ME/CFS patients.]

    [Night sweating is now put down to emotional issues]

    [So now concentration problems are the result of stress, and also lack of activity as mentioned earlier]

    [Orla - !!! Your symptoms are normal, and it is only your ignorance and abnormal illness beliefs that have you thinking otherwise]

    [Orla - your ignorance is leading to more symptoms]

    I am scanning in page 27 as it has a nice little diagram "explaining" some of our symptoms and problems, and I just know some of you are misinterpreting physical sensations as signs of disease!

    [​IMG]

    Attached Files:

  5. Orla

    Orla Senior Member

    Messages:
    446
    Likes:
    36
    Chapter 5. The Vicious Circle of Chronic Fatigue Syndrome

    I have scanned in page 30 which has a diagram of The Vicious Circle of CFS.

    [​IMG]

    [Orla - ??????]


    [Orla - they are ignoring the fact that if someone has been active they will know the difference between a normal reaction to exercise and an abnormal one. Earlier there was a little lecture about how athletes would interpret muscle pain, at the beginning of fitness training season, as a sign of being out of condition, which would go away as they got fitter (p15). Now all of a sudden, even though many CFS patients were previously active, they dont know the difference between being a bit unfit and symptoms of illness]

    Attached Files:

  6. talkingfox

    talkingfox Senior Member

    Messages:
    230
    Likes:
    3
    Olympia, wa
    Orla, I recently saw a training video for GP's in teh UK that pretty much outlined everything (except the 'research ' stuff) that was in the booklet.

    I've retitled the thing "How to Make Your Patients Shaddup and Drink the Koolaid"

    It was oh so chillingly polite with one of the more frightening undertones I've ever heard. It was training physicians how to discount anything the patient said in the most cordial way.
  7. dancer

    dancer Senior Member

    Messages:
    156
    Likes:
    16
    Midwest, USA
    Chilling is the word, all right.
    ARGH!
    Terrifies me and makes me never want to go near a doctor again.
    Seriously, even subtle undercurrents of this sort of drivel is what made my course of CFS/ME worse. After my mono wouldn't improve, and docs began throwing around the term CFS, I read up on it and determined I would NOT get deconditioned. I pushed myself... limping along on a treadmill daily, fighting not to pass out, ignoring the "perceived pain".... and I got worse and worse.
    This "blame the patient" false assumption stuff drives me absolutely crazy.
  8. Orla

    Orla Senior Member

    Messages:
    446
    Likes:
    36
    Chapter 5 continued

    [Orla yes, that is right, dislike of being ill seems to be something worth noting, as if it is a predisposing factor. Does anyone know anyone who likes being sick? What they are getting at is the idea that people returned to work etc too soon after they got sick, because of our disorderd personality. Of course a lot of people are under pressure to return to work or school too soon, or do too many hours too soon etc., thanks to government policies that are partly influenced by people who hold the psychiatric view of ME/CFS. Also contrast the seeming sympathetic tone of the above with what Pauline Powell and colleages (2002) have written in publications, which I quoted in the first page of this thread:

    "Poor outcome was predicted by membership of a self-help group, being in receipt of sickness benefit at the start of treatment"

    "Conclusions: Poor outcome in the psychological treatment of chronic fatigue syndrome is predicted by variables that indicate resistance to accepting the therapeutic rationale, poor motivation to treatment adherence or secondary gains from illness."

    Predictors of response to treatment for chronic fatigue syndrome RICHARD P. BENTALL, PhD, University of Manchester ; PAULINE POWELL, PhD and FRED J. NYE, FRCP, Royal Liverpool Broadgreen Trust ; RICHARD H. T. EDWARDS, FRCP (retired).
    The British Journal of Psychiatry (2002), 181: 248-252, http://bjp.rcpsych.org/cgi/content/full/181/3/248 ]

    [Orla, so our stupidity causes us not to know the difference between being unfit and sick, and then our "worry" about these symptoms causes more symptoms that make us worry even more.]

    I have scanned in page 34, The 3 Box Model of Chronic Fatigue Syndrome: The Causes of Symptoms. It is basically a summary of their thinking of the cause of CFS. I underlined one thing in pencil myself (just making clear that that was me underlinging it and not them, mind you it is something they go on about and emphasise themselves).

    [​IMG]

    Attached Files:

  9. Dolphin

    Dolphin Senior Member

    Messages:
    6,439
    Likes:
    4,663
    I've just started a thread on those videos at: http://www.forums.aboutmecfs.org/sh...English-GP-s-on-how-to-deal-with-CFS-patients - maybe you could repost your message there or say something similar.
  10. Orla

    Orla Senior Member

    Messages:
    446
    Likes:
    36
    Chapter 6 How Understanding CFS Can Help You Get Better

    I have scanned in page 35. It is worth looking at to see their attitude. Again I have underlined things in pencil (I was doing this for myself as I was reading it. Normally I was underlying things which were particularly interesting or bad. There was so much rubbish on this page that most of it is underlined!)

    [​IMG]

    They talk about some patients over-resting. But then also they also find fault in the behaviour of those who don’t rest!

    [Orla – in other words, if the evidence of your life shows our theories are rubbish, instead of changing our theories, we will just try to get the patients to reinterpret their life to fit in with our theories.]

    [Orla - So even if you are active, and not really deconditioned, you are]

    [Orla - no slacking now]

    [Orla -No prizes now for guessing the answer]

    [Orla - You don't have a real disease or medical condition, just the effcts of stupidity and laziness]

    [Orla - we hope you are buying into our propaganda so that we can convince you to do GET. I will post up some information from the second half of the document, the treatment section later.]

    Attached Files:

  11. Orla

    Orla Senior Member

    Messages:
    446
    Likes:
    36
    Hi dancer and talking fox, yes this stuff is pretty Chilling allright, and I kept thinking of parts of that video also.

    Orla
  12. Orla

    Orla Senior Member

    Messages:
    446
    Likes:
    36
    Part 2: The Treatment plan for Recovery: How to get better

    [Orla - So if you are a really good patient, and really want to get better, you will do what you are told. As a bonus can feel superior to other patients who are just wimps for not sticking to the programme]

    [Orla - I'm not sure that the word logic should be abused by appearing anywhere in this document!]


    [Note how definite they are that if people stick to the plan they will recover. No qualifications, hesitations, or balance.

    Here they are, putting the responsibility of recovery back on the patient. A quote here from a published paper to illustrate this way of thinking:

    “An important task of treatment is to return responsibility to the patient for management and rehabilitation without inducing a sense of guilt/blame or culpability for his/her predicament.”

    Sharpe M, Chalder T, Wessley S et al, Chronic Fatigue Syndrome: A Practical Guide to Assessment and Management, General Hospital Psychiatry 1997:19:3:185-199.
    http://www.kcl.ac.uk/content/1/c6/01...Sharpe1997.pdf ]
  13. Orla

    Orla Senior Member

    Messages:
    446
    Likes:
    36
    Chapter 7. The Right Thoughts for Recovery

    [They want to get into the patient's heads, and want to get the patients to accept psycho-social explanations of symptoms. Some psycho-social comments on this issue, from elsewhere:

    CFS is dogged by unhelpful and inaccurate illness beliefs, reinforced by much ill-informed media coverage; they include fears and beliefs that CFS is caused by a persistent virus infection or immune disorder Chronic fatigue syndrome: an update Anthony J Cleare Simon C Wessely Update 1996:14 August:61


    Social factors appear to play a role in CFS... Another potentially important social factor is the availability of misleading information about the illness. Both self-help books and the media have tended to emphasize 'medical' explanations for the symptoms of CFS at the expense of more psychiatric or psychological conceptualizations. Physicians may also unwittingly contribute to this process"

    Chronic fatigue syndrome and occupational health A Mountstephen and M Sharpe, Occup Med 1997:47:4:217-227 http://occmed.oxfordjournals.org/cgi...tract/47/4/217

    Whatever their biological basis, there is strong evidence that symptoms and disability are shaped by psychological factors. Especially important are the patients beliefs and fears about their symptoms. Research in several functional syndromes has found that a strong belief and preoccupation that one has a medical disease and a helpless and passive attitude to coping is associated with persistent disability...Some persons appear to exaggerate symptoms but this is often hard to prove.

    Although harder to research, social factors are almost certainly of great importance in shaping functional illness. Relevant factors include the information patients receive about the symptoms and how to cope with them. This information may be helpful or may stress the chronicity of the illness and promote helplessness. Such unhelpful information is found in self-help (!) books and increasingly on the Internet (see for example www.meassociation.org.uk). Unfortunately, doctors and especially specialist private doctors and complementary therapists may be as bad."

    Functional Symptoms and Syndromes: Recent Developments. Michael Sharpe, Trends in Disability 2002, UNUM. This report can be downloaded here http://tinyurl.com/29f8w


    ....all the ME books draw on immunology, virology, allergy,and AIDS where needed (which, in the case of AIDS, should be never)...A little more psychology and a little less T-cells would be welcome What your patients may be reading Wessely S BMJ 1989:298:1532-1533. http://www.jstor.org/pss/29704265 ]

    [Back to the Liverpool handout below]


    [Orla - extreme?? Well I suppose they have to justify all that CBT/brainwashing somehow!]

    [Orla - A few quotes from elsewhere that illustrate background to this sort of thinking:

    Research suggests that catastrophic or dysfunctional beliefs are common in CFS and are related to disability. Such inaccurate beliefs might fuel avoidance of activity.... Several studies suggest that poor outcome is associated with social, psychological and cultural factors. These include the strength of belief in a solely physical cause for symptoms, untreated psychological distress, and the use of avoidant coping strategies (such as reducing activity and/or dietary, social and other restrictions)". Royal Colleges Report, UK, 1996.

    Dysfunctional cognitions are not sufficient to account for prolonged disability; their importance is linked to the development of maladaptive behavioural patterns. A vicious cycle of pain, misery, avoidance and inactivity is established" Simon Wessely, Sue Butler, Trudie Chalder and Anthony David, in Post-viral Fatigue Syndrome ed. Jenkins and Mowbray, 1991]


    [Orla - Classic!]

    [Orla - Judging by the rest of the booklet, resting, because of feeling awful, comes under the category of unhelpful thoughts and behaviour. There will be more about unhelpful thoughts below (and "nice" little suggestions of alternative thoughts]
  14. Orla

    Orla Senior Member

    Messages:
    446
    Likes:
    36
    Chapter 7 continued

    [Orla - This has to be the funniest sentence in the whole booklet. They ignore the biomedical evidence that points to an organic medical condition, but they criticise patients for not challenging their thoughts enough!]

    [Do as I say but not as I do?]
  15. Orla

    Orla Senior Member

    Messages:
    446
    Likes:
    36
    Chapt. 7 continued (v. interesting re medical testing)

    [Orla - This passage shows how important it is for patients to have some abnormal test results. Otherwise they cannot prove that there are ongoing organic medical factors causing their symptoms, and they can be treated like they are just a bit silly/hypochondriacal for thinking there is something wrong with them.]

    [Orla - these people are adopting he typical psycho-social view that medical tests should be limited, and that doctors running a lot of tests can contribute to the problem of ME/CFS patients thinking that there is something physically wrong with them. Here are some other examples of this way of thinking, from elsewhere (which will hopefully show how dangerous these people are to us, and how they hamper progress in the medical arena):

    ..In most cases of chronic fatigue, few laboratory investigations are necessary. All patients should have a psychiatric history taken and their mental state examined.... The psychiatric assessment should be systematic... It is our experience that delay in diagnosis resulting in long periods off work and referral to multiple 'specialists' should be avoided as they can entrench illness behaviour [Orla - my emphasis]
    Chronic fatigue syndrome and occupational health[/U] A Mountstephen and M Sharpe, Occup Med 1997:47:4:217-227 http://occmed.oxfordjournals.org/cgi...tract/47/4/217

    "we feel that routine testing for such variables is more likely to result in iatrogenic harm than good. There is currently no diagnostic test or pattern of tests that can assist in the diagnosis of CFS. [Orla -my emphasis]
    Sharpe M, Chalder T, Wessley S et al, Chronic Fatigue Syndrome: A Practical Guide to Assessment and Management, General Hospital Psychiatry 1997:19:3:185-199
    http://www.kcl.ac.uk/content/1/c6/01...Sharpe1997.pdf

    "Unless their are pointers in the history or examination, detailed laboratory investigation in largely unheplful in anyone with fatigue lasting more than six months.....Studies of selected samples of patients have revealed changes in some parameters, such as antinuclear factor immune complexes, cholesterol, immunoglobulin subsets and so on; these are encountered only in a minority, are rarely substantial, and do not lead to any particular form of clinical management. Their significance is for researchers rather than clinicians. There are no laboratory tests that establilsh or cofirm a diagnosis of CFS, and none should therefore be performed for that purpose [Orla - my emphasis] Royal Colleges Report, UK, 1996.

    ".... Innovative service developments such as joint medical-psychiatric clinics and dedicated liaison psychiatry and psychology services will provide for patients who require more intensive treatment. Finally, the small but conspicuous group of patients who present with recurrent and multiple physical symptoms will be given proactive and coordinated care aimed at limiting unnecessary medical intervention and preventing iatrogenic harm. " [Orla - my emphasis]

    BMJ 1997;315:561-562 (6 September), Richard Mayou, and Michael Sharpe.

    Editorial: Treating medically unexplained physical symptoms Effective interventions are available
    http://www.bmj.com/cgi/content/full/315/7108/561 ]
  16. Orla

    Orla Senior Member

    Messages:
    446
    Likes:
    36
    Chapt. 7 contin. Anxiety and Panic

    [Orla - Notice the use of the word "sensations", rather than symptoms. I have read psychiatric literature talking about ME/CFS patients being hypervigilant to bodily sensations, and misinterpreting normal bodily sensations. Basically they are saying that we are imagining we have symptoms of illness when we don't.]


    [Orla - so your worry causes you unpleasant, but not serious, physical sensations, and then these sensations in turn cause you to worry even more - basically it is a vicious cirlce of unhelpful thoughts causing symptoms, and these symptoms then cause even more unhelpful thoughts]

    [Orla - Once again they are telling us that we don't have a serious medical condition]
  17. Orla

    Orla Senior Member

    Messages:
    446
    Likes:
    36
    Chap. 7 Contin. Unhelpful thoughts and alternatives (!)

    I have scanned in pages 46-48, and put them below. They have boxes for Symptoms, Unhelpful Thoughts and Alternative Thoughts, which are worth reading just for a laugh (again some things underlined by me).

    They keep banging on about building up activity in their "Alternative" (i.e. helpful/"correct") thoughts section. So whatever symptoms you have, GET is the answer.

    I will quote some of this stuff here to give idea as to the stupidity of some of their ideas.

    [Orla - of course many people with ME/CFS will have low, or unstable blood pressure, on standing, and possibly other (organic) problems to do with standing, so it is not unhelpful of them to interpret their symptoms as a problem and to sit down.]

    [Orla - they see symptoms as a sign of deconditioning not disease, and because of this they are giving appalling advice here]

    [Orla - didn't they just tell us a minute ago that this last thought was an unhelpful thought? It is handy though, they can interpret exactly the same thought as helpful, or unhelpful, as it suits them. Heads we win, tails you lose.]

    [Orla - we wish. There is no evidence for this view. Notice that they are comparing ME/CFS pain with the normal exercise pain an unfit person would get.

    I just love the manipulation on the rest and recovery thing. Just because one may not recover with rest, doesn't mean it hasn't a place in management (even they advocate rest periods elsewhere in the document, mind you it is rest but not as we know it!). Most people mark rest as one of the things they found most helpful. A survey (n=2338) conducted for the UK Chief Medical Officer's working group on ME/CFS found that Rest was considered the most helpful strategy, with 91% finding it helpful.

    As for saying others had recovered through GET, this is the clinic where they say people are recoverd when they are not.

    And one doesn't necessarily have to do GET before deciding whether it is likely to he helpful, useless or harmful. If one is already doing what one can, and not phobically avoiding activity, has flu-like symptoms etc, then there is no evidence that GET is useful (well there is no good evidence it works for ME/CFS at all actually, if one looks at the objective data). And a person can also look at the research, as well as their own experience, to make an informed decision]

    [​IMG]

    [​IMG]

    [​IMG]

    Attached Files:

  18. Elliot

    Elliot

    Messages:
    77
    Likes:
    0
    Leicestershire, England.
    I was the person who receieved the booklet from outside of Liverpool (in the east midlands actually). At first it looks credible in how it's explained, muscle deterioration..but then after a while it sinks in that the whole thing seems to contradict so many biological studies. I personally have tried get/cbt, mainly due to desperation! But after quite a while of doing it I've not found it helpful atall. Reading up on all of the controversies surrounding it has made me slightly aghast also. Great posts by the way Orla, liking the dissection of each bit; makes the read far more palitable :) .
  19. Angela Kennedy

    Angela Kennedy *****

    Messages:
    1,026
    Likes:
    152
    Essex, UK
    Thank you very much for all of this information Orla, and those that helped you obtain the document (?)

    This is damning stuff, revealing the stark irrationality behind the CBT model in CFS in these clinics.

    It will no doubt be able to be put to good use by many people.
  20. Gerwyn

    Gerwyn Guest

    A lot of people will get better this way because the oxford criterea are anti positivistic in nature so the patients in question are those that the Dr subjectively assess as having chronic fatigue syndrome.The oxford guielines are wholly subjective in nature and hence not scientific in any way That is why these guidlines will diagnose patients with depression and not patients with ME the neurological disorder at all.

See more popular forum discussions.

Share This Page