Training videos for English GP's on how to deal with CFS patients

Dolphin

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Posted on Co-Cure by Jean Harrison:
I cannot suggest strongly enough that patients watch two videos recommending how GP's should handle patients with CFS, which is equated with ME.

the way to see them is to go to:

http://www.veoh.com/

and then search for "Chalder"


These videos show how the push is on to say that ME & CFS are totally removed from any physical problems, but really boils down to Tired All the Time. The patients are either getting too much sleep or too little...

Of course this has nothing to do with the disease described by Canadian Criteria and even the Fukuda International Definition of 1994.
All the videos:

PART 1:http://www.youtube.com/watch?v=goz_tTaWmfE
PART 2:http://www.youtube.com/watch?v=cO7ua4IB5Hs
PART 3:http://www.youtube.com/watch?v=KYQpFtl2xe8
PART 4:http://www.youtube.com/watch?v=k5qalCDEOis
by Frank
 

Dolphin

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Here's an extract:
=============
Vignette 5
Reconstruction of a typical GP consultation

Dr Clare Gerada (Simon Wessely's wife) and Alicia Deale (playing the patient):

"...can I have a little look at
your diary?.....I think what your diary shows is again how important it is that we develop a consistent approach because what we talked about was that it's important that we break this association between activity and your symptoms .... we've talked before about the fact that you walk at the moment to the bus stop to go to work, how long extra would it be if you walk to the next bus stop?...."

"...what we're trying to do here as I've said to you is to break this association between activity and your symptoms because equally if you feel rotten I still want you to do that activity...even if you're absolutely exhausted I still want you to do your ten minute walk in the morning and the ten minute walk in the evening after work...

Alicia Deale (Patient): 'Is that going to be safe?'

Clare Gerada: it will be safe - all the evidence that we've put together and all the the research literature shows that is absolutely safe you will not do yourself any harm..."
They don't have evidence at all that doing such activity when feeling unwell is safe.
 

justinreilly

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They advise ME patients not to go on so many benders at the pub.

Thanks TomK!!
This is a very important video and I'm glad it's up on the web again (after luminescentfeelings shut his youtube)

That is a great excerpt. They still sell this and it shows they are now as always true evil clowns. Chalder, Tyree and their publisher make money off this as it is sold for a lot of money to GP's for their education.

Tyree says: "they're trying to tell us it's physical and we're trying to tell them it's psychological." And Chalder agrees and says to just avoid the whole topic if a patient brings it up.

In pacing they counsel ME patients who are working overtime to stop going on benders at the pub several times a week! They know how disabled and intolerant of alcohol we are and yet they do this to give the GPs the impression that we're not sick or 'the undeserving sick.' There is much more especially in the last half of the second video where they sum up all the lies.
 

Dolphin

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Thanks TomK!!
This is a very important video and I'm glad it's up on the web again (after luminescentfeelings shut his youtube)

That is a great excerpt. They still sell this and it shows they are now as always true evil clowns. Chalder, Tyree and their publisher make money off this as it is sold for a lot of money to GP's for their education.

Tyree says: "they're trying to tell us it's physical and we're trying to tell them it's psychological." And Chalder agrees and says to just avoid the whole topic if a patient brings it up.

In pacing they counsel ME patients who are working overtime to stop going on benders at the pub several times a week! They know how disabled and intolerant of alcohol we are and yet they do this to give the GPs the impression that we're not sick or 'the undeserving sick.' There is much more especially in the last half of the second video where they sum up all the lies.
Good points, Justin.

Here is a study from the Netherlands which shows alcohol abuse isn't a problem with people with CFS:

J Hum Nutr Diet. 2009 Jun;22(3):226-31. Epub 2009 Feb 17.

The lifestyle of patients with chronic fatigue syndrome and the effect on fatigue and functional impairments.

Goedendorp MM, Knoop H, Schippers GM, Bleijenberg G.

Expert Centre for Chronic Fatigue, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands. m.goedendorp@nkcv.umcn.nl

BACKGROUND: Little is known about the lifestyle of patients with chronic fatigue syndrome (CFS) and its influence on symptoms of CFS. The present study aimed to investigate the lifestyle of patients with CFS, and to assess whether lifestyle factors are related to fatigue and functional impairments.

METHODS: Two hundred and forty-seven patients fulfilling the Center for Disease Control criteria for CFS were included. Validated questionnaires were used to collect data on lifestyle factors, smoking, intake of alcohol, fat, fibres, fruit and vegetables, body mass index (BMI), fatigue severity and functional impairments.

RESULTS: Of the CFS patients, 23% smoked, 32% had an unhealthy BMI, and none had an unhealthy alcohol intake. A majority had an unhealthy food intake: 70% had unhealthy fat, fruit and vegetable intake, and 95% had unhealthy fibre intake. Compared with the general Dutch population, significantly fewer CFS patients were overweight. Significantly more female CFS patients abstained from alcohol, and fewer male CFS patients smoked. Unhealthy lifestyle factors were not significantly associated with fatigue severity or functional impairments.

CONCLUSIONS: CFS patients tend to lead a healthier lifestyle compared to the general Dutch population. However, no relationship was found between lifestyle factors and fatigue severity and functional impairments in CFS.
 

jace

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According to this misinformation video, there is no underlying nerve damage in CFS. The doctors all carefully avoid the term ME.

Apparently 75% of diagnosed CFS patients fulfil criterea for depression and anxiety, and GET is the answer! There is no mention of any symptoms apart from fatigue and muscle soreness, which in a way is a blessing, because if we present to a GP who has seen this video, with our dizzyness, food intolerance, headaches, sweats and chills, etc, etc., they may look elsewhere than smug Tracy Chalder's treatment regime.

They say our problem is inconsistency!! These people are putting the cart before the horse. We get ill because we restrict activitles or we restrict activities because we are ill? I have kept my sleep pattern nocturnal, and I'm shattered all the time anyway. How simplistic is this video's view.
Alcohol is a stimulant? Really? Keeps you awake?? I don't think so. Many of us are intolerant to it anyway.

70% get better over 2 - 48 months. Yeah right. It is really important to contain the approach, restrict referals, discourage patients from researching on the internet. Is that so you can build you empire, Ms. Chalder?
 

Dolphin

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These videos are a bit old but somebody posted this elsewhere to show they're still being used:

The Maudsley vids are 'advertised' by the WPA.

The doc was possibly put on-line around December 2009.

(created 18-06-09 modified 2-12-09)

http://www.wpanet.org/education/educational-resources.shtml

http://www.wpanet.org/education/depress-programme-description.shtml#vol4

http://www.wpanet.org/education/institutional-prog/DepressionVolumes_062909/Volume4_Training.pdf

Teaching can also be provided about specific
psychosocial interventions—what they are and for
which disorders they have been found effective: for
example, problem-solving for depression (Mynors
Wallis 2005), simple behavioural interventions
(e.g., motivational interviewing) for alcohol
problems (Miller and Rollnick 1992), graded
exercise combined with cognitive-behavioural
strategies for fatigue (Tylee and Chalder training
video—see Appendix 3),
and reattribution for
medically unexplained symptoms (Gask et al.
2000—see Appendix 3). All of these problems
may complicate the assessment and treatment of
depression in primary care. Lectures designed to
convey knowledge should be brief and tailored to
the needs of the audience (too often psychiatrists
present information that only psychiatrists need
or want to know and do not address the needs
of family doctors), with plenty of opportunities
for questions and discussion, and provision of
handouts with key references and Internet links....

Tylee A, Chalder T. The management of Chronic fatigue in
primary care. Training video (Available from Professor
Andre Tylee, Institute of Psychiatry, De Crespigny park,
Denmark Hill, London, SE5 8AF, Tel. +20 7235 3150).


Appendix 3
Training Videotapes
1. Managing somatic presentation of emotional
distress (Reattribution: 2nd edition)
2. Helping people at risk of suicide or self-harm
3. Depression: from recognition to management
4. Counselling depression in primary care
5. Problem-based interviewing general practice.
All available from Nick Jordan
(Nick.Jordan@manchester.ac.uk)

1. Anxiety (non-pharmacological approaches)
2. Dementia
3. Chronic fatigue
4. Psychosis in general practice

5. WPA video collection (anxiety, chronic fatigue,
dementia plus depression from recognition
to management and managing somatic
presentation of emotional distress)
All available from Professor Andre Tylee,
Institute of Psychiatry, De Crespigny park, Denmark
Hill, London, SE5 8AF Tel. +20 7235 3150

1. Alcohol problems
Available from Dr Barry Lewis,
Castleton Health Centre, Rochdale, Lancs OL11 3HY
Fax. +1706 358900
Also at :

http://www.iop.kcl.ac.uk/departments/?locator=367&context=789

Training Physicians In Mental Health Skills
Sir David Goldberg, Linda Gask and Norman Sartorius

This is a training package specially designed and created for GPs. It features some of the Institute of Psychiatry's top academics and other experts in the field of mental health.

Directed by emeritus Professor Sir David Goldberg and produced by the World Psychiatric Association, it includes five different presentations that demonstrate skills GPs need to help patients with mental health problems:

The Management of Chronic Fatigue in Primary Care (45 minutes)
presented by Andre Tylee and Trudy Chalder


The Management of Dementia in Primary Care (45 minutes)
presented by Andre Tylee and Simon Lovestone

The Management of Psychosis in Primary Care (45 minutes)
Presented by Andre Tylee and Graham Thornicroft

Depression in Primary Care (40 minutes)
Presented by Linda Gask and Sally Standard

Re-attribution: Somatic Presentations of Emotional Distress (85 minutes)
Presented by Linda Gask.

Each presentation features vignettes of GPs treating patients and advice on assessment tools, interventions and medication from the expert presenters. The package also contains a training manual, a set of introductory lecture slides, lecture notes and a set of role plays.

Training Physicians in Mental Health Skills is available on video or CD ROM and costs 50.

To buy a copy, contact Julie Smith in Primary Care Mental Health.
julie.smith@iop.kcl.ac.uk
Telephone 020 7848 0150
Fax 020 7838 0333
 

rebecca1995

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Call for Action by CAA

I can't watch this crap. It makes me nauseous.

I could only bring myself to watch 10 seconds of the first video. I get the idea. This is outrageous. I sure wish we had a forceful support group that could help us fight this utter nonsense. Wouldn't that be nice?
teej, that's an excellent idea. I propose that the CFIDS Association of America immediately address these videos, even though they're a British import, because the issues they raise are highly relevant to American PWME.

Ms. McCleary or Dr. Vernon should write an op-ed piece for a major newspaper on May 12, CFIDS Awareness Day. The theme? Psychiatry's abuse of PWME.

The essay would have three sections:

1. Begin with appalling quotes from these videos. Denounce and debunk them with science.
2. Think this can't happen in the US? Segue into a discussion and denunciation of "Complex Somatic Symptom Disorder", the proposed category for the DSM-V that overlaps ME/CFS definitions.
3. What will happen if this psychiatric category is actualized? More situations like that of the North Carolina boy who was removed from his parents' home by the Department of Social Services. Provide history of this case; condemn responsible psychiatrists.

Publishing such an op-ed essay would accomplish several things for the CAA. It would shine a bright light on the role psychiatrists have played in not only thwarting scientific research, but actively abusing PWME. It would prove that the CAA is willing to take on as much of a leadership role as the WPI, which is planning a statement on the DSM-V. And it would be a show of good faith to those of us who feel disenfranchised by the prominent place Bill Reeves and the Reeves Criteria have in the Association's current literature.

If neither Ms. McCleary or Dr. Vernon feels she can take on this task, a professional ghostwriter could write the op-ed in under three hours.

Do it now, CAA.
 

Dolphin

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Transcript - part 1

Somebody posted this transcript on a list I was on a few years back. I thought some members might find it of interest.

Maudsley videos

The treatment of chronic fatigue ("ME") in primary care.

Dr Tylee interviews Dr Trudy Chalder of the Maudsley Hospital. The
package demonstrates how not to get into arguments with the patient,
how to form a therapeutic alliance with them, and how to carry out a
plan of treatment aimed at the restoration of normal function.
--------------------------------------------------------


Vignette 1
Chronic Fatigue Syndrome


Dr Clare Gerada-Wessely: "How've you been feeling since we last met?"

'Nick': "Em, I'm still feeling tired all the time"

Gerada: "Right."

'Nick': "It's interfering with my studying"

Gerada: "Right."


'Nick': "I'm finding it difficult to concentate because I'm just
feeling tired all the time"

Introduction

By Professor Andre Tylee

CHRONIC FATIGUE SYNDROME

June Brown
Andre Tylee

Tylee: "Tiredness is a very common presenting syndrome in general
practice. Some of these patients are disabled by chronic fatigue
syndrome
.

It can be very frustrating working with patients with chronic fatigue
syndrome
, particularly as you can get into arguments based on their
preset ideas about what causes the problem and what sort of treatment
they want.

This video, is going to help you to manage these patients, and it's
going to give you lots of practical tips, so that, your patients with
chronic fatigue, will be more satisfied with their medical care."

Discussion Professor Andre Tylee and Dr. Trudy Chalder

Tylee: "Dr Trudie Chalder is a specialist in chronic fatigue syndrome
at the Institute of Psychatry."

Tylee: "Right so we've got these people that come in to see us in
general practice with tiredness and then you know we've excluded
anemia and underactive thyroid and things like that, how do we then
know, whether it's normal tiredness or at the other end of the
spectrum they've got chronic fatigue syndrome?"

Chalder : "Well the main differentiating characteristic between normal
tiredness that we all feel from time to time and chronic fatigue
syndrome
, is the disability that people are experiencing, and,
sometimes we see people in our clinic who are completely disabled
i.e. they're bedbound most of the time, and at the other end of the
spectrum...of the CFS spectrum.. there are people who are managing to
go to work, but are doing nothing in the evenings and then collapse
all weekend as a result of the tiredness."

Tylee: "Ah right"

Chalder: ".. so it's people who get into that all or nothing approach
to activity and everyday life that you need to worry about."

Tylee: "Right, so how common is chronic fatigue syndrome, as opposed
to normal tiredness."

Chalder : "Well chronic fatigue syndrome is not that common, about
0.2 to 0.5 percent of the population fulfill the criteria for chronic
fatigue syndrome, although I have to say it feels a lot more when you
think about how many peoeple we're seeing in our clinic, and about
10% of the population feel tired all the time."

Tylee: "Right, so the average GP with a list of about 2000 patients
might expect three of four patients quite possibly with chronic
fatigue syndrome
, but literally dozens with tiredness up the other
end, so if we can focus now on the chronic fatigue syndrome a bit
more, what are the sort of the key criteria, how would you make the
diagnosis?"

Chalder : "Well obviously the main thing is whether the person is
experiencing physical and mental fatigue, they usually will say that
their symptoms are made worse by exercise or activity, and so as a
consequence of that they will have reduced what they are doing in
response to the symptoms and will be substantially disabled, and in
order to fulfill the criteria it's an arbitrary cut off, but they
have to have had a fifty percent reduction in activity levels ."


'Criteria used in diagnosing chronic fatigue syndrome

Physical and mental fatigue

Symptoms worsen with activity

Substantial disability'

Tylee: "Ah, OK, right , over what period of time?"

Chalder : "Over a six month period ."

Tylee: "Right"

At this point we've found it useful to give you an opportunity for
discussion. When the Stop caption appears, we would like you to stop
the video and have a discussion amongst yourselves, on what a GP
should ask during the first consultation, with a tired patient.

What are the important tasks at this stage?
 

Dolphin

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Transcript - part 2

Transcript - part 2
Vignette 2: Assessing a Tired Patient
Reconstruction of a typical GP consultation

To show you how a GP might assess a patient with possible chronic
fatigue syndrome, we have re-enacted an actual consultation. The GP
is Dr Jenny Law, the patient, for reasons of confidentiality is
played by an actor.

Dr Jenny Law

Law: "Vince hi, how are you, how've things been since I last saw you?"

Deary: "Bit worse, actually, it's one year again, it's actually quite
a lot worse since I last saw you."

Law: "In what way, what's been happening?"

(Establishing disability)

Deary: "Much more tired, much more exhausted than I was and, it's
beginning to quite seriously affect work, having quite a lot of time
off sick, at the moment."

Law: "How much time have you had off in the last month?"

Deary: "Probably at least one day a week quite often two."

Law: "What do you feel's.. what's actually stopping you from going to
work, what's happening?"

Deary: "I'm just waking up in the morning feeling like I haven't been
to sleep, utterly shattered, very hard to get going, even on the days
when I do get going, it's difficult, couple of days I just can't make
it at all, can barely get out of bed."

Law: "What about in the evenings and the weekends what's happening
then?"

Deary: "I'm basically just recovering cos you know I work as a
teacher, there's quite a lot of homework that we're supposed to do,
and, barely up to that, and after doing whatever that I can do I'm
just crashing out, you know, going to bed about nine, spending a lot
of the weekeend sleeping basically."

Law: "In terms of having the time off work what do you think's
actually stopping you from going to work what's happening with you,
is it that you just feel you can't or.."

Deary: "It's not so much about feeling it's just that if on a day
when I'm feeling really bad if I push myself too hard then it just
knocks me out, if I try to go to work on day when I'm feeling that
awful I wouldn't be able to go to work for the next four days, if I
push myself too hard, because it just completely knocks me out."

(Enquiring about social adjustment)

Law: "And are you able to do any social activities get out and see
people or...?"

Deary: "I am trying cos I'm aware of getting quite isolated at the
moment I don't want that to happen so I have been trying to see
people but that's becoming more of an effort than it was, again, I
can do it and enjoy it at the time, but if I stay out too late then
it knocks me out for a couple of days, so again I've had to stop
doing that or I've had to cut it down quite a lot."


Law: "Vince I'm sorry I can't remember have you got a partner at home
have you got support or is.."

Deary: "Not really, I mean again, it's like most things are becoming
difficult managing the house, cooking, really basic stuff at the
moment very exhausting ."


(Discovering patients beliefs)

Law: "So have you any ideas yourself what might be causing this, any
thoughts?"


Deary: "Well I've talked to a couple of colleagues about it and, to
me it's sounds very like ME, which I don't know an awful lot about, I
done some reading , but to me from what I've read and from what I've
heard it sounds like I've got ME"

(Discovering patients beliefs)

Law: "Well from what you've told me and you know, the symptoms with
the muscle pains and the fatigue and everything I think you may
well be right, it's what I would call chronic fatigue syndrome, which
is essentially just another name for the same thing it means..
the
same thing to, you know, the medical profession, what sort of things
have you read about it?"

Deary: "Nothing particularly consistent, I mean from what I can make
out it seems to be caused by a virus and it's caused by a virus kind
of.. that has in some way damaged my nervous system, or my muscles,
which is certainly what it feels like.. it feels like my muscles are
damaged, you know I used to do a lot of sport, and I can't do that
anymore, my muscles feel very different from what they did ."

(Negotiating a diagnosis)

Law: "Right well, what I can tell you that certainly in the past
people have speculated about the link between viral infections and
M.E. or chronic fatigue syndrome, and there's no definite link
between one and the other, most common viruses are known not to be
the cause of it and, it's thought that people who become fatigued and
have this, there are a whole number of different reasons coming
together and therefore if you did have a virus some time ago which
you link with this, em, your body would have clearded the virus by
now, so there's no actual evidence in chronic fatigue syndrome of
nerve damage or anything like that, so in that respect there's no
drug treatment as such for an infection that we would give you for
it."

Deary: "So there isn't actually any, cos that's how it feels, it does
feel like as if there's some kind of physiological damage"

Law: "Well I mean your symptoms, the physical symptoms are real,
obviously, but there is no underlying nerve damage in chronic fatigue
syndrome."

Deary: "So, what can we do about it?"


Law: "Well em, there is treatment that can help and I can give you
some advice about that so we can talk about that "

Discussion: Assessing a Mind Patients [sic]

Professor Andre Tylee and Dr. Trudy Chalder


Tylee: "Trudie what was the em GP doing there with Vince in that
illustration that we've just seen?"


Chalder: "She was doing two or three things, the first thing was
that she was finding out how the fatigue affects his everyday life
essentially how disabled he is."

Tylee: "Yes"

Chalder: "She also wanted to find out what he feels has caused it,
because that may be important in terms of how well he'll engage with
treatment... which we'll talk..."


Tylee: "Now thinking about what she.. was asked.. talking about his
beliefs about it, is it important to sort of put somebody right if
they believe that it's due to a virus or another reason, does that
help?"

Chalder: "No I don't think it does I mean I think it's important to
incorporate that belief... in a more sophisticated model of
understanding the illness that you would share with the patient, if
that makes sense."


Tylee: "Right yes."


Chalder: "It might be the virus in conjunction with a number of other
factors which contributed to the development of the fatigue."

Tylee: "Yes I see, now with viruses I mean clearly there are some
viruses that really do affect you badly aren't there like the Epstein
Barr Virus for example what do you normally discuss about viruses
with patients at this sort of part of the assessment"

Chalder: "Well some patients worry that they've got some virus
lurking in their body that's still there months after the initial
viral infection has gone away, and so it can be important to tell the
patient that serious viruses such as glandular fever, hepatitis or
meningitis that they can cause fatigue six months after the onset,

but again

it's likely to be a number of factors working together, that causes
the severity and the chronicity of the fatigue."

Tylee: "Right, right, and also in your assessment what other things
would you be looking for in terms of perhaps co-morbid eh problems?"


Chalder: "Well the important thing from the GP's perspective is
looking for depression and anxiety, and we know that up to 75% of
people both in primary care and in hospital populations, those people
with chronic fatigue syndrome, also fulfil the criteria for
depression and anxiety."

Tylee: "So in that case should the GPs be treating people with
antidepressants.. em ..whatever, or should we be targetting
particular patients for treatment, concurrent treatment with anti-
depressants?"

Chalder: "If the diagnosis is clearly or primarily depresssion, where
the person is experiencing loss of enjoyment, then, I think it would
be worth trying a course of anti-depressants, but if the diagnosis is
primarily chronic fatigue syndrome then there is no evidence that
antidepressants work, and I think that course.. line of

treatment would be unhelpful because it may actually alienate the

patient, particularly if they don't feel that they're depressed "

Tylee: "Right, now on that idea about alienation, this is something
that we often find in primary care you know we're trying to tell this
person that it's a psychological problem, they're trying to tell us
it's a physical problem, how do we manage that situation?"


Here is another chance for discussion. When the Stop caption appears,
we would like you to stop the video and discuss how the GP can avoid
arguments with the patient.

[Discussion Point 2 Avoiding Arguments..]

Professor Andre Tylee and Dr. Trudy Chalder


Avoid Arguments

Chalder: "I think first of all avoiding the term "psychological",
because it's unhelpful and it seems to me to mean lots of different
things to different people, and usually patients think, that you
think it's all in their mind if you use the term psychological, other
people think that there's something lurking in the cupboard as yet
undiscovered, that is creating this problem and of course that's I
think in their mind a bit silly, so I think it's best to avoid the
term "psychological" altogether, and just think about the problem in
terms of how physiological , cognitive and behavioural factors are
working together, and if you think about how what you do influences
your symptoms then it leads on to effective practical management
strategies."


Tylee: "Could you perhaps expand on the physiological cognitive and
behavioral science of how you would assess and how you would begin to
start explaining the eh... the diagnosis to the patient."


Chalder: "Well I think the I think the diagnosis is quite clear and
we know that patients like to be given a specific diagnosis, I think
just saying 'yes you do seem to fulfil a criteria of chronic fatigue
syndrome'
is adequate, I think the way the GP describes the
similarities between chronic fatigue syndrome and M.E. was fine, and
I think seemed to satisfy the patient well enough , em , in terms of
explaning how what em the way in which you behave influences your
symptoms, I think it's.. you would start off by just asking them
maybe to go away and keep a diary of their activities with a view to
changing the way in which they manage their activities on a day to
day basis, so that that will then influence how they're feeling,
although of course these changes the patient will feel often takes
quite a long time weeks and even months."
 

Dolphin

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Transcript - part 3

Transcript - part 3

Vignette 3
Reconstruction of a typical GP consultation

Law: "Thanks for coming back now what I wanted to do today was to go
over with you em how we're going to try and look at ways of improving
the situation and helping you with your symptoms , em.. which
essentially is a practical approach and the reasoning behind this it
is to try and break down the worry you have about undertaking an
activity, then feeling absolutely awful you know shattered and tired
and then worrying about doing it again and feeling you need to rest,
em ...the idea is that if we can break that down by you working out
some structured activity that you can undertake, and that you will
actually start little by little to feel better and feel less fatigued
because what's actually happened is that you've got yourself caught
up in a vicious circle so you know the more you do the worse you feel
the less you feel like doing so you rest, and then, obviously if you
do rest and you don't use your muscles, you know, they don't like it
if you start using them again in undertaking activity, so that's if
you like the sort of basic thinking behind trying to plan an approach
for you, and help you improve, does that make sense?"

Deary: "Kinda does, it slightly worries me when you say worry though
because, it almost makes it feel like it's just.. it's feels like
more than just worry about things getting worse you know when I do
undertake some thing genuinely makes me feel.. I don't think it's
just worry"


Law: "No no I'm not suggesting that it is just worry I understand
that, you know, there is a genuine physical tiredness and fatigue
going on, but if you like, what I'm saying is that em, what you will
need to do is undertake some of the activities that you know that are
likely to make you feel bad and accept that even if you do feel bad,
as long as you do it in a structured way and at regular intervals
that it will help, now, it may be something like just taking three
five minute walks."



Deary: "Right, I was going to say I've tried that you know I used to
do quite a lot of swimming and go to the gym and stuff and a couple
of week ago I thought I could do with some exercise cos I'm aware
that I'm losing strength so I try to go swimming and it knocked me
out for three days."

Law: "So when you're at the pool what did you actually do I mean how
much did you try and do?"

Deary: "Well I did what I used to do, I went in you know I did about
twenty lengths which was never was a problem for me before."


Law: "Well I think probably what happened then is that you probably
pushed yourself a bit too far, and that you tried to do too much,
and what I'm suggesting is that if you start off just doing a very
little, and gradually build it up, that, it won't have that kind of
effect as I've said before you may still feel tired but you shouldn't
feel so awful, and this is a process that's gonna take you know some
weeks it's not you can't expect to get back to full activity very
quickly, we're looking at probably months of doing this of gradually
building back up em.. but the critical thing is to do it consistently
and spread out, not to kind of rush off and do as you said you know
you did the twenty lengths because that would make you feel awful,"


Deary: "It kinda sound.. I mean.. practically how would it work..
what kind of things were you suggesting that I do?"

Law: "Right well em in order to come up with a sensible plan of
action for you what would be really really helpful is if you could
keep a diary of the activity that you're currently undertaking,so
what I'm talking about is a day by day account where you write down
hour by hour what you're actually doing, so for example you don't
need to do anything special, you just get a piece of paper and you
rule it up and you have say the hours of the day you know the time
down one side, so nine ten eleven etc, and then the days fo the week
you know Monday, Tuesday, etc., and just if we roughly rule the paper
up, you know if you've go a diary at home you could use that, and
then each hour just make a very very brief note, you know, had a
rest, read the paper, went for a walk, whatever."

Deary: "Ah, so you basicaly want to know what I'm doing?"

Law: "Yes so throughout the day keepng a diary of it, then that would
give me some idea of what you're basically able to do at the moment,
and then if you and I met again in about two weeks time we can go
through that, and then we can build on that, and I can give you
advice about what sort of activities you could start increasing
gradually, so that it would be a that it would be very, it's a very
practical exercise."

Treatment Plan

Professor Andre Tylee and Dr. Trudy Chalder

Tylee: "Trudie, what's the rationale for this activity scheduling
that the GP's just shown us?"




Chalder: " Well it's really important that the patients keeps a
detailed diary of their em.. activities and their rest throughout the
day, so that you can then re-order all of the activities so that they
become more consistent, so it's important that you ask the patient to
break up their activities into small chunks, evenly spread throughout
the day, so that the patient is then breaking the association between
the symptoms that they're experiencing and the activity."

Tylee: "Ahhh right."

Chalder: "Because people tend to get into the habit of stopping
activity when they feel tired, so then of course the symptoms are
controlling them rather than them being in control of the
symptoms, so then you can see what they're doing and use that as a
base line for asking them to practise specific goals that you agree
in the session."

Tylee: "Right, now going back a step could you just perhaps tell us a
bit more about why a diary is being used in this particular
situation, what's the model behind it?"


Chalder: "Well, it's important to make a clear distinction between
the factors which contributed to the problem in the first place, most
people will mention a virus, but it's usually that in conjunction
with a number of other things, and then factors which keep the
problem going once it's started and the factors which keep the
problem going are usually people reducing their activity, because,
they're fearful that if they carry on with their activity then it
will make the problem worse, so what you're doing is asking them to
re-order their activities, so it's no longer symptom dependent."

Tylee: "Yes now is there something else that we would wish the
patient to keep a record of by using a diary?"

Chalder: "It would be very helpful for them to keep a specific detail
diary of their sleep routine."


Here's another discussion point. When the Stop caption appears stop
the video and discuss what kind of advice GPs should give to patients
about their sleep.



Discussion Point 3 Sleep Routine

Sleep Problems
Professor Andre Tylee and Dr. Trudy Chalder

Tylee: "So Trudie why is it important for the GP to take a good sleep
history?"

Chalder: "Well first of all most CFS patients that I've seen have had
a disturbed sleep pattern if they get into sleeping during the day
when they're tired, and then of course if you sleep during the day
then it steals the sleep from the night time."

Tylee: "Ahhh.."

Chalder: "And even though people feel extremely tired they can't
necessarily sleep more as a consequence of that tiredness, and so
what happens is that they have a very disrupted sleep pattern, just
sleeping for a short period of time and then waking up, they don't
have the average eight hours solid sleep at night time which appears
for whatever reason to be very good for us."

Tylee: "Right right, so it does seem then that if you sleep for the
same number of hours at the same time each twenty-four hours, that
that has a beneficial effect on the syndrome itself?"

Chalder: "Yes it does , in fact it has quite a dramatic effect on
people's symptoms and they quickly start to feel less tired."

Tylee: "Right."


Chalder: "For example I saw a young man in my clinic a couple of
weeks ago, and he was sleeping most of the morning and then staying
up most of the night, he said that was when he got his creative
energy and I'm sure that's true to some extent, but we just
reorganised his sleep so that in fact he was more creative in the
afternoon rather than the evening or into the night."

Tylee: "Ah, so his creativity just shifted, oh right, ha ha ha."
 

Dolphin

Senior Member
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Transcript - part 4

Transcript - part 4

Vignette 4
Reconstruction of a typical GP consultation
The GP in this excerpt is Dr Clare Gerada ( Wessely)

Gerada: "Hello Nick, nice to see you again how have you been feeling
since we last met?"

'Nick': "Em I'm still feeling tired all the time, and it's
interfering with my studying , and I find it difficult to
concentrate, I'm just feeling tired all the time, I can't seem to get
any energy."

Gerada: "OK. I asked you to keep a diary over the last two weeks.
Lovely, just looking at this (diary) it is obvious that you have got
a very very erratic sleeping time, here you went to bed at 9, here
you went to bed at 2 o'clock in the morning, you're also sleeping in
a number of mornings a week aren't you ? I notice that the late times
are when you've been working in the pub, do you find that you're
drinking may be a lot more than you used to, maybe using it to try
and get off to sleep those nights?"

'Nick' :"That thought had occurred to me you know maybe if I had a
few drinks before I went back home, that would help me to sleep a bit
better."

Gerada: " OK. I think what I'd like to do is to look at ways of
altering this sleep pattern, me and you together now, look at ways we
can actually alter it to maybe get you to go bed at the same time
each night , and to wake up at the same time each morning, now I want
this to be realistic, what sort of time do you think you can actually
go to bed at night ?"

'Nick' : "Well I mean I don't... I normally go home if I'm working at
the pub about twelve o'clock, but one of the things that makes it
difficult is that sometimes I've a lot of course work to get in,
essays to write and sometimes I stay up a bit longer, and try and get
some of that done, I imagine at one or twelve or one o'clock."

Gerada: "OK, now as I said there's awful lot on this and you are
doing an awful lot in the average day you're studying you're working
in the pub, you're doing all this course work but I think if we can
tackle the sleep so that you actually get your eight hours sleep in
every night, you will feel less tired and you'll therefore have more
mental energy left to do some of the studying, so think we can make
then 12 to 12.30 as a realistic time that you can go off to bed at
night?"

'Nick': "Yes I think that's.."

Gerada: "OK. You're lectures start at 9.30 in the morning , so what
would be a realistic time for you to get up in the morning?"

'Nick' : "Eh well, I'd need to be up I imagine about eight or half
past eight."


Gerada: "OK, well lets say eight o'clock then, you've got an alarm
clock at home have you?"

'Nick': "Yes."

Gerada: "All right, well let's look then at you going to bed between
twelve and twelve thirty and waking up at eight o'clock in the
morning, now you're going to feel lousy, you're going to feel
absolutely lousy, in the beginning, cos you're not getting your lie
in."

'Nick' : "I feel lousy now so it won't make that much difference."

Gerada: "OK. Some people think it's very boring to sort of have set
routines and yes, I think a lot of people get their creative energy
from working with the adrenaline rush as probably you do sometimes
but, I think in your case it's gone a little bit over the top hasn't
it I think that's why, in a sense, you've come to see me feeling
tired all the time."

'Nick' : "Right."

Gerada: "Do you think that makes sense?"

'Nick' : "Yeh, I mean I am doing em quite a lot until I get through
the MSC with all the studying on top, and working as well ."


Gerada: "The other thing is the alcohol, what sort of, you're
obviously drinking erratically throughout the week, I just wonder
again whether if we said let's limit the alcohol to two pints or two
pints equivalent per night whether that again would be something that
you would be able to do?"

'Nick': "Well.. em, that's OK but if I go out socialising if I go to
a club or I go to a pub with friends I'd probably feel a bit strange
just having two pints when everybody else is carrying on drinking."

Gerada: "That's very true it might be that you're going to the clubs
at the weekend is that right?"

'Nick': "Yeh that's right."

Gerada: "Well let's say that maybe during the week if you could limit
your alcohol intake to two pints at night, and at the weekends well
we'll look at the weekends at later stage, but I think if it's not
affecting your work at the weekends, then that's fine, but equally a
lot of alcohol acts a stimulant so the more alcohol you take, the
more stimulated you'll be, and the more you'll find it difficult to
get off to sleep at the normal times."

'Nick': "OK"

Gerada: "Do think you'll be able to do that for the time?"

'Nick': "Well I'll give it a go."

Gerada: "Lovely, so we'll meet again in two weeks."

Tiredness?

Professor Andre Tylee and Dr. Trudy Chalder

"Is there a difference then between people who are tired all the time
and people with chronic fatigue syndrome in terms of their sleep
patterns?"


"Yes but obviously this is a generalisation because some people with
chronic fatigue syndrome sleep too much, they have hypersomnia, but
equally it's true that they have insomnia or disrupted sleep pattern
because of what we've just been discussing,

they're sleeping during the day rather than at night time,

but people with tired all the time syndrome.. whatever you like to
call it, often are not sleeping enough because they're trying to
juggle too many things all at the same time, so they probably need
slightly more rest during the day and maybe a few more hours in bed
than they're presently getting."

Tylee: "Right, so the advice would be quite different in their
situation?"

Chalder: "And in addition sometimes people with chronic fatigue
syndrome oscillate from one extreme to the other, where they're
getting too much sleep or not enough, what they need is a consistent
pattern of sleep."

Tylee: "Right."


Here's a final opportunity for discussion. When the Stop caption
appears, discuss how a GP should manage these patients over the long
term, what advice should you give about the diaries?

Discussion Point 3

Activity scheduling using diaries

Activity Schedule
Professor Andre Tylee and Dr. Trudy Chalder

Tylee: "So Trudie what's the rationale for this activity
scheduling?"

Chalder: "Well, it's really important that the patient keeps a
detailed diary of their activities and their rest throughout the day,
so that you can then re-order all of the activities so that they
become more consistent so it's important that you ask the patient to
break up their activities into small chunks, evenly spread throughout
the day, so that the patient is then breaking the association between
the symptoms that they're experiencing and the activity .."

AT "Ahh..mm."

Chalder: "And the factors which keep the problem going are usually
people reducing their activity, because they're fearful that if they
carry on with their activity then it will make the problem worse."
 

Dolphin

Senior Member
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Transcript - part 5

Transcript - part 5

Vignette 5
Reconstruction of a typical GP consultation

Dr Clare Gerada (Wessely) and Alicia Deale:

Gerada: "I'd like to review the diary that you've kept, like to talk
about treatment and I'd like also to talk again about developing a
consistent approach to activity which is something we touched on last
week, what do you remember about what we talked about.. about that
what... what what do you remember about that ?"

Alicia Deale: "Em, I remember you saying that I needed to gradually
build up my activity bit by bit."

Gerada: "Yes, I think we talked about how important it was that
activity was consistent throughout the week, rather than in bursts of
immense activity followed by nothing, is that right?"

Alicia Deale: "Yes."

Gerada: "OK. Can I have a little look at your diary? Just talk me
through it."


Alicia Deale: "OK. Well, Monday, Tuesday, Wednesday were fairly
typical I went to work and when I came home I did nothing I just
rested, Thursday I tried to do a bit more after work and I was quite
busy first part of the evening and then just felt worse and worse and
I was so exhausted on Friday I just had to take the day off and I
spent it in bed recovering, felt a bit better on Saturday and that
was a fairly normal weekend day, where I was fairly sedentary I
suppose, watching a lot of tele reading the paper, Sunday I felt I
have got to try and build up my activity and do more so I went out on
a big walk, which probably wasn't a very good idea I think, it was a
few hours, I did lots of rest along the way I was walking very
slowly, but I think I really regretted it by the evening."

Gerada: "So if I can just recap, Monday Tuesday Wednesday were fairly
normal days, Thursday you did some activity and this was followed by
you feeling exhausted, Friday Saturday, so that you had to take to
your bed on Friday, Sunday you did this enormous burst again, of
activity. I think what your diary shows is again how important it is
that we develop a consistent approach, because what we talked about
was that it's important that we break this association between
activity, and your symptoms."


Alicia Deale: "Yes, I can see what I'm doing, it's hard to know how
to change it."

Gerada: "You've got activity on Thursday followed by symptoms,
activity on Sunday followed by... how are you feeling now ?"

Alicia Deale: "Dreadful.."

Gerada: "Right."

Alicia Deale: "I'm feeling knackered.."

Gerada: "OK , so can you help me then over in a normal week, how can
you consistently increase the amount... or consistently do some form
of activity?"

Alicia Deale: "Well, I suppose I shouldn't go on these very long
walks and perhaps try and do a bit more each day."

Gerada: "OK , we've talked before about the fact that you walk at the
moment to the bustop.. is that right.. to get to work, how long extra
would it be if you walk to the next bustop?"

Alicia Deale: "Another five minutes though it takes me about five
minutes to get to the bus stop at the moment, the next one's about
another five minutes."

Gerada: "So one way then is if you walk to the second bus stop in
the morning and got off a bustop early in the evening, you'd be doing
ten minutes of activity in the morning, and ten minutes of activity
in the evening, is that right?"

Alicia Deale: "Yeh yeh."

Gerada: "And that would be an overall increase of ten minutes in one
day, well, why not then 'til we next meet, that for the week , you
did this extra ten minutes a day, so that's ten minutes in the
morning ten minutes in the evening, what could you do at the
weekends, for a similar amount of activity.. of walking?"

Alicia Deale: "Eh ... well I suppose two ten minute walks each day
at the weekend, that would be more or less the same...that would be
the same wouldn't it?"

Gerada: "OK. So you can still potter around and do the things that
you would normally do on a Saturday and Sunday, but what I would like
is for you to have that, ten minutes in the morning, ten minutes in
the evening, of activity, and it's probably better if you keep it
consistent, with ten minutes in the morning, and ten minutes in the
evening, rather than putting it together to do a twenty minute hike."

Alicia Deale: "Oh right, OK"

Gerada: "Would that be alright, do you think you'll be able to manage
that?"

Alicia Deale: "I think I probably could.. probably be a bit of an
effort at the weekends but I think I probably could but em , and of
course I could always do more can't I, if I feel really energetic on
a Sunday or something then I can always do a longer one?"

Gerada: "I don't think at the moment that you should do that I think
it's very important at the moment that we develop a consistency, and
even if you're feeling full of energy, I don't want you to do more
than a ten minute's walk in the morning, and a ten minute's in the
evening, and all the normal things that you do during the day, but I
don't want you to do these bursts of activity"

Alicia Deale: "OK, I suppose if I'm not going on hikes I'll probably
would have a bit more energy in the week would I, so probably make it
a bit easier to do those two ten minuters?"

Gerada: "I think it would and I think what we're trying to do here as
I've said to you is to break this association between activity, and
your symptoms, because equally if you feel rotten, I still want you
to do that activity."

Alicia Deale: "What.. even if I feel really, really, really
exhausted?"

Gerada: "Even if you're absolutely exhausted, I still want you to do
your ten minute walk in the morning, and the ten minute walk in the
evening after work."

Alicia Deale : "Is that going to be safe?"

Gerada: "It will be safe.. all the evidence that we've put together
and all the the the research literature shows that it is absolutely
safe you will not do yourself any harm and as I said it's important
that we make your activity consistent across the week."

Alicia Deale: "OK"

Gerada: "So you'll be able to manage that before the next
appointment?"

Alicia Deale: "Yeh, I think so yeh that does sound.. it sounds just
about manageable, I think..yeah."

Gerada: "Good."

Discussion
Professor Andre Tylee and Dr. Trudy Chalder

Tylee: "Why is the GP limiting the activity in that situation when
somebody's got chronic fatigue syndrome?"

Chalder: "Well the most important reason is because patients with
chronic fatigue syndrome get into this all or nothing approach to
activity, when they're feeling good they'll do masses of exercise or
activity, when they're feeling bad, they won't do anything, or they
certainly reduce the amount they're doing, so it's important to
develop a consistency and that means not only maybe increasing the
amount they're doing but also stopping themselves from doing too much
when they're feeling quite good."

Tylee: "So having done that, I guess the process really has to be a
slow supportive steady one so that the GP's really got to help the
person to very very gradually build up their activities and but keep
limit them initially is that correct?"


Chalder: "That's right I mean I think we're thinking in terms of
months rather than weeks so the GP needs lots of patients (laughs).."

Tylee: "Yes yes..."

Chalder: "....as opposed to people, em, to stick with it over a
number of months and seeing the patient maybe once every two or three
weeks to set new goals (AT: 'Yes') and during that time they could
discuss any difficulties that the patient's having"

Tylee: "Yes and to keep the goals realistic so really sort of
increasing them very very slowly as appropriate."

Chalder: "Absolutely, it's really important not to go too quickly
(AT: 'Right') it's much better to go slowly and surely and get there
in the end than to do things too quickly for it all to go wrong which
is what often happens."

Tylee: "Yes, now when things do go wrong I mean presumably it doesn't
always work this way, what's the point where the GP should be
thinking about referral?"


Chalder: "I think if you've given it your best shot for about a year
at that point then I would think about why it's gone wrong and if you
think a specialist referral would be helpful then at that stage then"

Tylee: "Yes, now what sort of specialist because there are
immunologists, psychiatrists, psychologists, there's all sorts of
people that specialise in this area aren't there, who would you
recommend, resources willing of course ?"

Chalder: "Yes it's extremely difficult but I think the most important
thing is that whoever you refer to whether it be the immunologist or
the psychiatrist that they're committed to a practical rehabilitative
approach."

Tylee:: "Right. Yes, so it's this pacing approach that's the sort of
key to it so if a cognitive therapist is available would you suggest
that sort of..?"

Chalder: "A cognitive behavioural therapist, absolutely. I think
initially it's important to focus on the behaviour rather than the
way in which people are thinking (AT: 'Right') because it's a bit
threatening going in directly trying to change the way in which
people think."

Tylee: "Yes."

Chalder: "So intiially it's just a very straightfirward pragmatic
approach you need to stick with you know over a long period of time
but bearing in mind, that there are going to be times when things go
wrong, and predict with the patient that they are going to have
setbacks but and help them to plan how they're going to cope with the
setbacks as and when they occur

Tylee: "Yes yes. Now the other situation that myself and my partners
at my practise often find is that people go to the M.E. Association
and they get lots of advice off the Internet and Newspapers and
Things and they come in with a whole wealth of different agencies
that they'd like to be referred to but presumably it's more
appropriate really to contain it.."

Chalder: "Yes absolutely.."

Tylee: "...and keep it simple in the way that you've just described it
is it?"

Chalder: " I think that's really important, I think if the patient's
being investigated by a number of different specialists then it's
going to be difficult to engage them in this sort of rehabilitative
approach, so I would try and negotiate with the patient actually
stopping ...erm... that process, of having more investigations, which
obviously is not always easy. "

Tylee: "No, no, no, but that's very helpful, now then to summarise
really what I think we've discussed is that people can be taught how
to relearn or to change their behaviour and their sort of
physiological processes in a way that can actually control chronic
fatigue syndrome, is that correct?"

Chalder : "That's absolutely right and in fact that's not really
different to most other illnesses you know if somebody's got diabetes
or heart disease, then essentially the health professionals are
teaching people how to cope with their symptoms and disability and we
know that the degree of pathology is not necessarily correlated with
the degree of disability, you know so I think our job generally is
about helping people cope."

Tylee: "Yes. Despite the fact that we've seen all these techniques
that can be used, it does remain that a lot of GPs feel a bit
pessimistic with these sort of patients, what do you think?"

Chalder: "Well I think it's true that GPs and doctors in general feel
pessimistic about patients with chronic fatigue syndrome, but I think
it's misguided pessimism I think there's absolutely no reason for
them to feel pessimistic at all, in that I've been seeing patients
for about thirteen years, most of them have been extremely rewarding,
and have made significant improvements both in terms of their
symptoms and disability ."

Tylee: "Right What percentage would you expect to get better?"

Chalder: "About 70% in hospital populations which is actually very
good."

Tylee: "Over what time would that be?"

Chalder: "Well it's obviously not going to be an overnight cure.. em
it's going to take several months sometimes up to a couple of years,
but if you persist with it and don't give up and recognise that there
are going to be ups and downs.."

Tylee: "Right."

Chalder:"...then, patients will get better."

Tylee: "And if they're left untreated the converse must be the case
surely?"

Chalder: "Left untreated patients certainly don't get better and they
deteriorate."

Tylee: "Right, thank you."

Round Up
By Professor Andre Tylee

"Chronic fatigue syndrome patients are difficult, we hope that you
will persevere with them .

It helps to arrange firm follow up and not to expect too much.

Change often occurs over the long term.

We've included with the package some guidance on using role plays to
develop your skills in working with these patients, because we've
found that it's only by rehearsing the skills that you need that
you'll be able to use them when faced with the real situation.

All that remains now is to wish you the very best of luck with it."

Credits

Produced by
David Goldberg
and
Trudi Chalder
The Patients were role-played by
Vince Holding [Vincent Deary]
Mick Nichol
and
Alicia Deahl [Alicia Deale]

The GPs were
Fiona Gelder
and
Clare Gerada (Wessely)
 

pollycbr125

Senior Member
Messages
353
Likes
185
Location
yorkshire
ive just posted these videos to my facebook page . im sorry but these actors pretending to be patients bare no resemblance to the illness and problems to which i am suffering if this is how my doctor percieves my illness no wonder i am getting no support or treatment . it really is a joke . to my worldwide friends i hope for your sakes your countries do not follow suit cause if they do it is god help you .No mention of pain or nuero problems grrr if 'tiredness' as they put it was my only problem id be laughing . talk about trivialising an illness they really havent got a clue !
 
R

Robin

Guest
I didn't know I could negotiate a diagnosis! Damn! I could have picked something treatable!

Actually, I blame my doctor. Here's how my diagnosis went:

Doctor: I think you have chronic fatigue syndrome.

Me: What's that?

Doctor: Well, some people are just tired all the time. But, it has to last for at least six months.

Me: Oh. Well, I'm sure I'll be fine by then. I don't have that.

Later at home...

Me: (looking up CFS) NO! NO! NO! NO! DO NOT WANT!

(end)