The Psychiatric view of ME/CFS. What is it?

[Dr. Yes]

"...CBT is designed to treat mental illness. There is no such thing as CBC (cognitive behavioural counselling) for helping mentally well people with the problems of everyday life. The fundamental difficulty with compulsory CBT for trainees that theres no illness to treat, so it would simply be going through the motions in a limited and pointless way.

Disappointingly, the view was expressed in this discussion that CBT is just a bunch of techniques for living life, and that anyone at all, mentally ill or mentally well, can learn techniques. I think its extraordinary that someone with so little understanding of how CBT works should be found piping up in what was meant to be a serious discussion. Its as I wrote above even in an orientation as simple as CBT there are therapists who do not understand the methodology."

http://cbtish.wordpress.com/2009/10/15/twist/#more-1761

The site is worth a look as there is other interesting stuff there also.

Sometimes CBT is sold to patients as just a coping technique, that non-mentally ill people can find useful. Sometimes this is being done dishonestly by those who think ME/CFS is a behavioural and mental health problem, and they want to hide their true beliefs/intentions from the patients, other times this idea is promoted by sympathetic people who are trying to be helpful.

I wonder if sometimes what is being called CBT may be more supportive listening with some good tips, rather than strictly speaking CBT (which is to correct very maladaptive beliefs and behaviours)? I think this is what the Overview of the Canadian Guidelines are getting at when they say (as I mentioned before):

Some physicians, who are cognizant of the biological pathophysiology of ME/CFS, teach patients coping skills but call them CBT. We urge such doctors to use the term Self Help Strategies and avoid using the terms Cognitive Behaviour Therapy and Cognitive Retraining Therapy."

Fantastic post, Orla! These quotes ought to be posted on the new "Home" page of this forum. Or at least put in a 'Sticky'.

Every independent, professionally-oriented CBT description I've found online makes no bones about it: CBT is meant for people with fundamentally unhealthy beliefs stemming directly from neurotic thinking, not from physical illness per se. It has been employed for people with physical illnesses (mainly ME/CFS of course!) but only with the rationale that they have developed some mild neurosis as well which impairs their functioning. And, of course, many who recommend CBT for ME/CFS believe the neurosis (or even psychosis) to be primary, or 'co-primary' (if they believe there is physical illness at all).

Thanks for reminding me of the Canadian document's quote; I knew I had read that somewhere but couldn't remember where! Wanted to cite all this stuff for people in a previous conversation who believed they knew the 'real' definition of CBT. Not one of 'em's a psychologist, of course... and I'm quite sure, as mentioned in the first quote, that many psychologists aren't aware of the basis for it either. :Retro mad:

 

[Orla]

I didn't know whether to post these or not as they are so offensive, but it can be useful to know how some doctors can think about ME/CFS patients. Some of these quotes are from a good few years ago, but some are more recent. Regardless of time frame they are quite consistent in their contempt for patients. It is interesting to see how the views expressed below also fit in with the views of the psychiatrists quoted earlier in the thread, even if they are put in a more blunt and basically tabloid way. If anyone is feeling a bit bruised emotionally you might want to leave reading this for another day.

I got this section below from http://www.meactionuk.org.uk/ME_-_Who_is_attacking_whom.htm

In Doctor magazine on 12th January 1995 in the section entitled Bluffers Guide, Dr Douglas Carnall wrote about chronic fatigue as Yesteryears neurasthenias: Investigations have their own hazards it is possible to reinforce the patients somatising behaviour. This has all kinds of risks, especially that the patient will run off to join a self-help group, membership of which is itself an adverse prognostic factor. Modern bluffers prefer the term chronic fatigue syndrome. If they insist on a physical diagnosis tell them chronic fatigue syndrome is a complex disorder in which multiple biopsychosocial factors are mediated via the anterior hypothalamus in other words, its all in the mind.

On 5th May 1996, in the section on America (Foreign News), the Sunday Express published a piece by Jonathan Miller, who stated: the absolutely most fashionable disease here is Chronic Fatigue Syndrome CFS for the initiated. The headline was Chronic Bandwagon Disease.

On 18th February 1999, Adrian Furnham, Professor of Psychology at University College, London, wrote an article in the Daily Telegraph in which he suggested that there was a wealth of conditions that can be fashionable excuses for lack of success in which he included ME/CFS. In the ME Associations Newsletter (Perspectives, Summer 1999, page 3), Dr Charles Shepherd, the Associations Medical Adviser wrote: Professor Furnhams view that ME/CFS is nothing more than a fashionable medical excuse for people who are otherwise lazy, mediocre or incompetent is not only insulting, but totally inconsistent with published scientific findings. Dr Shepherd made a formal complaint to Disciplinary Committee of the British Psychological Society, claiming that Professor Furnham had broken the Societys Code of Conduct given that their Code of Conduct required that members shall value and have respect for scientific evidence when making public statements. After four months, the Investigatory Committee of the BPS concluded that Professor Furnham had not committed any form of professional misconduct.

Commenting on a paper in the Journal of the Royal Society of Medicine about children with ME/CFS, Dr Keith Hopcroft, a GP in Basildon, Essex wrote in Update, 6th April 2000, page 522: In more than three-quarters of a group of children with chronic fatigue syndrome, the illness began at the start of the school year. An adult version of this recurrent brief chronic fatigueaffects me every Monday morning.

On 28th August that same year, Dr Hopcroft wrote in the Scotsman: There is great debate among the medical profession and in the media about what causes CFS and how it should be treated. Those who specialise in this area reckon its futile to look for the cause.

In 2001, Dr Tony Copperfield (known to be a pseudonym of a GP in Essex who writes a regular column in Doctor magazine) posed a question: What would be your initial response to a patient presenting with self-diagnosed ME? Out of four possible answers, the correct one was stated to be: For Gods sake pull yourself together, you piece of pond life.

On 23rd March 2001 in an article entitled Top 100: the many faces of fatigue, GP magazine afforded Dr Marko Bogdanovic (research registrar, Merton College, Oxford, and a Wessely School psychiatrist) a platform to attack ME/ICD-CFS sufferers: The provision of disability services and benefit payments is controversial because illness beliefs may be reinforced (and) services and benefits constitute a secondary gain.

Also in 2001 on 20th October, in the section called Choices for the new generation of GPs, Pulse magazine (sent to GPs and to hospital libraries) carried a prominent feature giving three GPs views on what was described as a tricky situation. The subject for discussion was: ME patient with litigation history demands inappropriate therapy. The response by Dr Mary Church (real name), a full-time Principal in a GP practice near Glasgow...was particularly disturbing: Never let patients know you think ME doesnt exist and is a disease of malingerers. Frustrating though it iscertain members of the profession are true believers. Never advise an ME patient to make a review appointment. At the end of the consultation, I say goodbye, not au revoir. Always refer ME patients to a local expert. Its a wonderful way of passing the buck. Almost more disturbing than her response is the fact that Dr Mary Church is a member of the British Medical Associations Medical Ethics Committee.

As recently as this month [Orla - this was written in 2005], Dr Mike Jones (Senior Physician at Edinburgh International Health Centre, Musselburgh and Associate Specialist, Regional Infectious Diseases Unit, Western General Hospital, Crewe Road, Edinburgh) states: In at least some cases of CFS, and possibly most, there are psychological factors. Occasionally CFS is a clear benefit to the CFS patient. Rational discussion is often hampered by polarisation by those who dislike psychological hypotheses of causation into believers and non-believers. Believers can then dismiss the views that they do not like on the grounds that the person who holds those views does not believe in ME.

 

[Orla]

I forgot to post a link to this. Shocking report from the UK in 1993. Note the Neurologists comments:

http://niceguidelines.blogspot.com/2010/01/dr-anne-mcintyre-interviews-ean-proctor.html

Edit: someone on another list I am on has the full tape of that Frontline programme and has a transcript of that section, including more comments from the Neurologist.

Peter Hudgson: "The one absolutely clear cut clinical feature of the disease is the personality profile of the people who develop it. Many of them of them have profound psychosexual difficulties. Partner relationships and life in general. They're people who just aren't very happy with the life situation they find themselves in. Now most of us would say I recognise that in myself if you like, but it's a question of how you react to it. I came across a case recently where a father said peeling potatoes for dinner, he was completely exhausted for several days. Now I don't believe that reflects organic dysfunction of any aspect of the nervous system from the motor cortex down to your finger tips. I think that is bound to be, to use a colloquial phrase, in the mind."

 

[kurt]

Thanks for that new info Orla

Also in 2001 on 20th October, in the section called “Choices for the new generation of GPs”, Pulse magazine (sent to GPs and to hospital libraries) carried a prominent feature giving three GPs’ views on what was described as a “tricky situation”. The subject for discussion was: “ME patient with litigation history demands inappropriate therapy”. The response by Dr Mary Church (real name), a full-time Principal in a GP practice near Glasgow...was particularly disturbing: “Never let patients know you think ME doesn’t exist and is a disease of malingerers. ...

As recently as this month [Orla - this was written in 2005], Dr Mike Jones (Senior Physician at Edinburgh International Health Centre, Musselburgh and Associate Specialist, Regional Infectious Diseases Unit, Western General Hospital, Crewe Road, Edinburgh) states: “In at least some cases of CFS, and possibly most, there are psychological factors. Occasionally CFS is a clear benefit to the CFS patient. ’”.

I think several of my doctors could have said the above. Maybe more ME/CFS patients need a 'litigation history' and should 'demand therapy'. Maybe we have not made sufficient legal cases. This has bothered me for some time, we can sit and complain all day long about the psychologizing of CFS, but what do we do about it? Clearly we have few advocates, in our personal lives or in the public square. Usually with most disabling illnesses it is parents or friends or partners who make a big stink, file lawsuits to get care for their loved-one, etc. But the idea of psychologizing is so strong that it seems to also sidetrack many of those who should be advocating for CFS, and helping turn the tide of public opinion.

There is a psychological problem here, a public psychosis about CFS that has served to insulate the medical profession from the natural consequences they should be suffering for ignoring such a major sick population.

In defense of psychiatrists, at least they do believe we are sick. I appreciate that fact even if they do fail to recognize what they can and can not treat successfully. After all, if the psychologizers were correct they should have at least an 80% or higher cure rate by now. This should be simple to solve if they are correct.

Also, psychology is actually a very effective field in medicine, they have better cure rates in their patient cohort than surgery in its cohort, for example. I don't recall the study title but there was a meta analysis years ago of the most effective medical therapies, and psychiatric treatments were more effective on the whole than most medical treatments are for various biological illnesses. So therefore, if CFS were psychological, it would probably have a high cure rate by now.

There is another benefit from the emphasis on psychological problems in CFS, we probably are one of the most mentally healthy patient groups. I spent years working on all of my 'psychological issues' thinking that would help my CFS, and I solved so many issues I had, that I can honestly say I am far healthier mentally than I ever was before CFS, even with the brain fog.

Of course when we do get a scientific consensus about the cause of CFS most of this will disappear, may take a few years for the older doctors to 'get it' but that will happen.

Therefore, I see the REAL issue here not as psychologization but rather the lack of cooperation among CFS researchers, the lack of a coordinated effort to follow a systems biology paradigm (the only one that makes sense for CFS), and the lack of a consensus opinion that makes sense and squares with ALL the research (and not just the research that supports this or that view of CFS). We NEED that consensus, that will allow things to move forward in a positive direction.

 

[Dolphin]

Therefore, I see the REAL issue here not as psychologization but rather the lack of cooperation among CFS researchers, the lack of a coordinated effort to follow a systems biology paradigm (the only one that makes sense for CFS), and the lack of a consensus opinion that makes sense and squares with ALL the research (and not just the research that supports this or that view of CFS). We NEED that consensus, that will allow things to move forward in a positive direction.

Sorry to be a bit picky but not sure why consensus is necessarily so important. I think it's such early days that I'm happy if different angles are looked at and think a consensus would be premature e.g. some people think particular viruses are causing ongoing problems, others might say it's hit-and-run or would mention different infections, etc.

 

[kurt]

Sorry to be a bit picky but not sure why consensus is necessarily so important. I think it's such early days that I'm happy if different angles are looked at and think a consensus would be premature e.g. some people think particular viruses are causing ongoing problems, others might say it's hit-and-run or would mention different infections, etc.

Consensus would be easy if the answers to CFS were easy and obvious. But in this type of complex illness you have to ask where to draw the line. When do we say 'well we do not have all the answers yet, but we DO know this much and this is what CFS looks like at this time.' That can create a type of 'critical mass' that can be used to launch serious research and advocacy efforts. Too much uncertainty for too long creates a type of uncertainty culture that I think is part of why we are so disenfranchised both politically and medically. Also this leads to a kind of desperation among patients, makes us more vulnerable to unproven ideas about CFS.

And yes, I certainly agree that many angles must be looked at in ongoing CFS research. The point of a consensus is not to restrict research, but rather to build a little stability in our image. Without a scientific consensus about SOMETHING related to CFS it is hard to build a strong body of research that holds together coherently. As a result research is scattered and then it is impossible to point to any clear view of CFS that we can insist the medical community adopt. Also without a consensus it is more difficult to defend ourselves against crazy ideas like the notion that people would self-inflict CFS on themselves, or that there is some psychological benefit from this type of suffering.

 

[Mithriel]

Kurt, I may be reading your meaning wrong but you seem to be saying that there will come "critical mass" of evidence that will change things.

That critical mass was actually reached in the 1980's before CFS was invented. No one suggested it was anything like neurasthenia until SW came along and insisted it was. Since then, the focus has shifted from a disease where there is a unique pathology related to exercise to a dust bin for any form of fatigue. I was ill for seventeen years before anyone mentioned fatigue as particularly important and I certainly never experienced it - malaise and collapse, yes, but not fatigue.

Since then all physical evidence that does not support the biopsychosocial view had been ignored, trivialised or distorted.

The number of they claim have it has been expanded and the symptoms pared right down. How many of us recognise ourselves in the description of the average patient, or haven't met lots of people who had "ME " a few months and got over it (usually by being morally superior)

The hope with XMRV is that people outwith the stranglehold will have a vested interest in the research and it will be too big for the psyches to suppress.

Mithriel

 

[Orla]

Exercise programmes

Thanks for the thoughts everyone. I have a few thoughts on these issues also, but first I had meant to comment on something Tom posted way back in December. Here is Tom's post:

Tom (December 22nd)

Firstly, if many people including many medical professionals, here that graded exercise/graded activity programs are safe and effective in a condition and are not told that a ceiling can exist, they can think that the person can exercise themselves back to full health, functioning at the same level as the person did before they became ill.

And people who promote such views rarely do much to dissuade people of such a view.

It is also apparent in recent years that professionals, and Peter White and some CBT proponents in the Netherlands in particular, have started talking about GET and CBT (based on GET) leading to recovery and full recovery.

A closer look at the studies generally shows that the definitions of recovery and full recovery are misleading.

Again, claims by drug companies would most likely be much more strictly regulated.

---------------

Back to me (Orla)

This is why the CBT/GET issue is so important (other than that these treatments can make so many people with ME/CFS worse). These people think that we can exercise our way back to full health, so that there is no need for biomedical research or treatments. This is partly why these ideas are so dangerous, as when the authorities (both state and medical authorities) buy into these views it means that they also have no interest in funding/doing biomedical research, or exploring biomedical treatments for us. So if the CBT/GET promoters have the ear of the authorities we will never any decent treatments, never mind a cure.

Also, on an individual patient level, many patients are being told they can exercise themselves back to health, and often (usually?) not warned of any possible adverse effects of exercise, or that patients might have a ceiling/limit to their activity levels over which they might not be able to go. This happens because these practitioners don't recognise that we do have a ceiling, or that we have an ongoing organic medical condition.

Instead of warning patients about the potential adverse effects of exercise programmes, these practitioners often go out of their way to reassure the patients that they cannot harm themselves with an exercise programme. They also often reassure patients that what we would call post-exertional malaise, or exercise intolerance, are purely the effects of deconditioning. They often advise patients that the worsening of symptoms due to the exercise programme is temporary, just a sign of deconditioning, and that it will cease over time.

To give one example of this, I have a copy of a document which is given to patients who attend the CFS clinic at Royal Liverpool University Hospital in the UK. See post below. (I have other examples which I will post up again)

 

[Orla]

CFS/Exercise programme, Royal Liverpool Hospital

Quotes from a handout given to patients attending the Royal Liverpool Hospital CFS Clinic. I have put the page numbers after the quotes.

Cover page:

Chronic Fatigue Syndrome:

What you need to know to get better

This booklet has been written with the help of patients who have made a full recovery from Chronic Fatigue Syndrome. Facts and information which were important to them in making this recovery have been included.

"all of the changes listed above can be reversed by a therapeutic activity programme" (p.14)

"Activity or exercise cannot harm you" (p. 50)

"The type of exercise needed for recovery is aerobic exercise" (p. 53)

"Athletes at the start of the season do not expect to achieve full potential in the first days or weeks of training.
They start building up fitness and stamina gradually, in a sustainable way over many weeks. They expect symptoms of deconditioning, seeing them as a sign of unfitness, not of physical disease.
They know as stamina and fitness increase muscle pain and fatigue will disappear." (p. 51)

"First impressions of an activity plan
...The increase is symptoms is only temporary.
Those who perservere at this difficult point notice that over time as they become fitter, the symptoms of physical deconditioning gradually lift" (p. 51)

"The key to successful recovery is:

if possible on a bad day try to do the same amount of exercise as the day before but no more.
It will be a struggle but you will not harm yourself" (p. 64)

"Those who have recovered experienced bad days with increased symptoms, but by working through their thoughts about those symptoms, using their understanding of physical deconditioning, they managed to overcome their symptoms and the fears." (p. 64)

"Restarting exercise after a cold or setback
...Symptoms may increase again causing fear of relapse, but remember these are the symptoms of physical deconditioning, nothing else." (p. 65)

"Summary of Activity Plan

..2. Choose an aerobic activity to do at least twice a day.

...5. On bad days if possible try to do what you did the day before. This is the key to a successful recovery.

....6.Your symptoms will increase at first but this is only temporary. (p.68)

 

[Martlet]

but by working through their thoughts about those symptoms

So, the other day we were at a DIY place. HUGE, it was, with everything we needed scattered about all over the show. My legs had that familiar "wading through water" heaviness. Then came the muscle pain. Then, a muscle in my left thigh "locked," for want of a better term, and my leg almost gave way. I hobbled back to the car leaning on my husband. What should I have thought about that? I know, I know!

Fatigue won't hurt. Press on.

Muscle pain won't harm, press on.

A muscle spasm will not harm me, crawl on...

Sorry Orla. I know this is a serious thread but I needed a little rant.

 

[gracenote]

Quotes from a handout given to patients attending the Royal Liverpool Hospital CFS Clinic. I have put the page numbers after the quotes.

Orla,

Is that what is being handed out currently? Or is it older? Is there a date on it? It has seemed to me, that over time, the psych lobby has gotten less blatant in their public words. I could be completely wrong about this it's all pretty new to me.

The advice is so wrong that it's hard to believe that something like that is still being handed out. Martlet, I want to rant with you, even though I am one of the fortunate ones who never got such ill advice.

 

[Orla]

Hi Martlet

I hope you didn't interpret those symptoms as signs of disease, as otherwise the thought police might come and get you.....

I know what you mean though about needing to let off steam. I think I might need post-traumatic stress counselling from just reading the document! It is shockingly bad.

When I have a chance to type up more of it I will give it a thread of its own, as it is an interesting example of the practical application of the psychiatric view of ME/CFS.

Gracenote, the date 2004 is on the document, it was definitely in use still in late 2007. I was sent a copy by someone in Spring 2008 and it seems to have been still in use at that stage. I am checking whether it has been in use more recently, but I have no reason to believe that Liverpool have changed their attitude.

I am wondering whether they will suddenly start to alter some of these documents for patients if the XMRV looks like it will pan out??

I have some other interesting bits of info about Liverpool, but too "tired" to post up at the moment,
Orla

 

[Gerwyn]

psychology versus psychiatry

Hi Martlet

I hope you didn't interpret those symptoms as signs of disease, as otherwise the thought police might come and get you.....

I know what you mean though about needing to let off steam. I think I might need post-traumatic stress counselling from just reading the document! It is shockingly bad.

When I have a chance to type up more of it I will give it a thread of its own, as it is an interesting example of the practical application of the psychiatric view of ME/CFS.

Gracenote, the date 2004 is on the document, it was definitely in use still in late 2007. I was sent a copy by someone in Spring 2008 and it seems to have been still in use at that stage. I am checking whether it has been in use more recently, but I have no reason to believe that Liverpool have changed their attitude.

I am wondering whether they will suddenly start to alter some of these documents for patients if the XMRV looks like it will pan out??

I have some other interesting bits of info about Liverpool, but too "tired" to post up at the moment,
Orla

psychiatry has never cured anything their favourite tools of CBT and behaviour modification were developed by psychology which recognises their severe limitations lack of generalisability and very high relapse rates psychiatrists take no note of the developments in neuroscience re the development of the mind and how things can go wrong so they resort to chemical coshes or frying brains.Kurt is quite right if the problem was psychological there would have been a high cure rate certainly more than the current 4%.Psychiatrists cant even deal with their own neurosis and narcisism let alone any one elses troubles at worst malign at best floundering.I think I'm about to have intermittent outburst syndrome again--love that DSM!

 

[Dolphin]

psychiatry has never cured anything their favourite tools of CBT and behaviour modification were developed by psychology which recognises their severe limitations lack of generalisability and very high relapse rates psychiatrists take no note of the developments in neuroscience re the development of the mind and how things can go wrong so they resort to chemical coshes or frying brains.Kurt is quite right if the problem was psychological there would have been a high cure rate certainly more than the current 4%.Psychiatrists cant even deal with their own neurosis and narcisism let alone any one elses troubles at worst malign at best floundering.I think I'm about to have intermittent outburst syndrome again--love that DSM!

There have been psychologists who have bought into the idea that all patients basically need is Graded Exercise Therapy (GET) and CBT based on GET.

 

[Dolphin]

Consensus would be easy if the answers to CFS were easy and obvious. But in this type of complex illness you have to ask where to draw the line. When do we say 'well we do not have all the answers yet, but we DO know this much and this is what CFS looks like at this time.' That can create a type of 'critical mass' that can be used to launch serious research and advocacy efforts. Too much uncertainty for too long creates a type of uncertainty culture that I think is part of why we are so disenfranchised both politically and medically. Also this leads to a kind of desperation among patients, makes us more vulnerable to unproven ideas about CFS.

And yes, I certainly agree that many angles must be looked at in ongoing CFS research. The point of a consensus is not to restrict research, but rather to build a little stability in our image. Without a scientific consensus about SOMETHING related to CFS it is hard to build a strong body of research that holds together coherently. As a result research is scattered and then it is impossible to point to any clear view of CFS that we can insist the medical community adopt. Also without a consensus it is more difficult to defend ourselves against crazy ideas like the notion that people would self-inflict CFS on themselves, or that there is some psychological benefit from this type of suffering.

You're still assuming a consensus is good/going to be something you agree with. The NICE guidelines is a consensus document - pretty much the only thing offered is GET and CBT based on GET.

The (UK) Medical Research Council (MRC) research strategy is a consensus document. They said (toned the language done in the final version but it's basically the same document as the draft) that one didn't need to know the cause to treat a condition. Their position was the way to go currently was to study rehabilitation strategies (CBT/GET) and studies into the aetiology and pathophysiology weren't necessary.
The MRC has only ever approved grant applications from psychiatrists and psychologists who thought that GET and CBT based on GET were what people needed.

A consensus is based on which people you get to agree the consensus.
Peter White could get people into the room to agree a consensus that Chronic Fatigue should be the only symptom required to satisfy a definition of CFS.

 

[Orla]

Institute of Psychiatry GP training video

I have put a piece below from a training video for Doctors that was produced by the Institute of Psychiatry in London. This is the current page advertising these videos

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.

There was a more detailed page originally but seems to have been removed. This is what they said about the ME video on their webpage :

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

Dr Tylee interviews Dr Trudy Chalder of the Maudsley Hospital [ Orla -Trudie Chalder is a nurse not a medical doctor, but has gotten some sort of PhD]. 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.

You can see the original page where they were selling them here (but it takes ages to download as it is an archived page)

http://web.archive.org/web/20060222120553/www.iop.kcl.ac.uk/iopweb/departments/home/?locator=412

Someone posted details about this series of videos on various UK M.E. lists on March 27th 2007. Round about the 8th April the Institute of Psychiatry deleted the page with info just above (so very probably in response to being caught out).

Someone put snippets of the videos on You Tube, but unfortunately closed their You Tube account, so you cannot view these anymore. I think a friend of mind has them so don't buy them anyone! I have the transcipts of them anyway.

The piece below starts off mildly enough, and you might think it is not too bad, but wait till you get to the end. I have highlighted the bad bit at the end. The rest of the videos were pretty awful also, but I just wanted to highlight the poor advice on exercise here. The main thing worth noting is the idea that they want to break the link between how you feel and whether or not you exercise, so they still want people to exercise even if they feel awful.

Gerada (Acting as Doctor): "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 (Acting as patient): "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 bus stop 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."

 

[Orla]

Patient experience of UK Fatigue clinic

I thought this was an interesting example of an experience by a patient at a UK Chronic fatigue clinic.

Source: Campaigning for Research into ME (RiME) Newsletter
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Letters re. NHS Clinics - July 2007

This newsletter contained extracts from letters sent to Des Turner, Chairman of the APPG on ME (This is a parliamentary group on ME/CFS).

------------------------------

Ref: 620 Kent (Isle of Grain)

In January 2003 I had an appointment to attend the Maidstone
Clinic (Maidstone is approx 25 miles from where I live). The
Chronic Fatigue Clinic was situated away from the hospital next
to the psychiatric unit. I was interviewed twice to assess whether
I was suitable for CBT. At the time I was not aware of being
assessed for CBT, but found out later. I did not want to go as,
having had ME 11 years, I was pacing and adjusting my life style
to compensate for the ME. However, if I did not go I could never
cite or say what happened.

In January 2004 I was given an appointment at Medway
Maritime Clinic (14 miles from home); I could drive there and
park in the disabled bays. I certainly was not ready for the trek
through Medway hospital to the appointed room; by the time I
reached the room I was in pain, exhausted and a bit out of it.
Undeterred, I stayed; the room started to fill up with other ME
people, filling up the uncomfortable chairs. There must have
been about 15 of us and, at the time, I thought it very strange that
a CBT session should be a group as CBT is personal and
everyone is an individual and will have different problems; some
will be to shy to share; others will dominate the group and the
whole thing will become ineffectual; as people needs are not met
they will not come again and fall through the net, which did
happen.

The session started the same as any other group, name
introduction act. There were three leaders: a lady who ran the
session, a physiotherapist and a nurse. I am not sure why they
were there as they did not do much. We were all asked our
goals and aspirations, and what we would like to gain from this
experience. Some of the answers saddened me, as people
would say I would like to get better from having CBT, others just
wanted some relief. Personally, I wanted less pain and
exhaustion. I asked about pain control and was told there was
none.

The monthly sessions entailed forms to be filled in at home on
our pacing methods. If you know anything about ME trying to fill
in forms when you have cognitive fog just does not happen.
When I am ill I cannot write a letter let alone fill in what I am doing
as I have not got the energy to even find a pen.

Each month I would turn up and for over a week after attending I
was ill from pain and exhaustion. However, still undeterred, I
made it for the whole year's sessions leaving out one as I was
too ill to go.

October 2005, they ended the monthly get togethers and told us
we would be emailed re. our next session.

October 2006, we were now down to five persons and were
asked how we felt the CBT had helped. And that this was the last
appointment; the look on the four people with me was one of
astonishment and questions like - is that it, no follow-up? We left
in utter dismay; we had seen no consultants; nothing was ever
done for us medically, just flip charts and forms.

In one of the sessions a man collapsed we were afraid for him
because most of us knew that when a person collapses with ME
he needs to be laid down and cared for; as he fell forward in his
chair, the group leader said leave him, he will be ok; there was
no compassion for this man.

Conclusion: ... The whole exercise was a waste of NHS money
as we were all long term sufferers who had learnt to PACE,
through trial and error. For the people who suffered ME pain
there was no help; we were told that for our pain it would be
better if we steer clear of certain kinds of pain killers that were
likely to help, as they were mainly morphine based and we would
end up having addictive problems.

 

[Orla]

From patient rep

The RIME e-newsletter from July 2007 also quoted these:

Extracts from RiME Newsletter, Autumn 2005:

Kathleen McCall, leader of the Winchester and
Eastleigh ME Group:

... What makes me laugh is that to our face they call this the
ME/CFS Clinic when in reality it's the Hants and IOW Chronic
Fatigue Service.... We are meant to be reassured by the fact
that the Southampton Clinic is modelled on the Wareham Clinic
in Dorset. From correspondence I've received from PWME
who've attended the Wareham Clinic, I'm not reassured at all, as
Wareham seems to show a strong psychiatric bias of it's own.
One ME patient at Wareham was told she was having treatment
based on physical strategies for dealing with ME; they then
wrote to her GP saying treatment was focused on 'identifying
and challenging negative thought processes that could have
hindered her recovery... ' [Orla - my emphasis]
What PWME primarily want is proper
research into their condition and, with this mind, we support
RiME's efforts...




...Chair of Birmingham Solihull Group, 13/7/05:

The members wish to express their deep concern that the
patients' representatives... are clearly being excluded form any
meaningful dialogue in the development of the new services for
ME/CFS at the Birmingham and West Midlands CNCC and the
S Birmingham LMDT. Assurances were given that, although the
Birmingham + Solihull Mental Health trust was chosen to 'site'
the bid, the new ME/CFS services would operate independently
from the psychiatric service. This is not the case.... Accordingly
Solihull and S Birmingham Support group have advised their
patient representatives to disengage from any further
participation...

The latter, 11/2/07:

I see West Midlands CNCC going the same way as many others
- very short of funding and not much on offer in the way of
anything except diagnosis. Our members' view is mostly the
same as your contacts - nothing in it for them and certainly not
what they wanted. We asked the members who had been to the
clinic to rate it out of five and we had a lot of zeros. [Orla - my emphasis]

 

[oceanblue]

I'm a little late to this thread but thanks to Orla for assembling such a comprehensive resource on the 'abnormal beliefs and behaviour' model of CFS. Reading it all now, I'm struck by how much of this model is explicitly laid out in the PACE trial paper and manuals as the basis for CBT and GET. I'm pretty sure this was done deliberately, so that the presumed success of these therapies would validate the underlying model. However, the relative failure of PACE does the reverse - it seriously undermines this model. The model assumes that beliefs and behaviours are the primary drivers of CFS and predicts that CBT & GET to change these beliefs/behaviours will lead to recovery. Well, it didn't work out that way.

As far as I can see PACE does more than merely test CBT/GET, it also tests the model that Orla has described here so well. I know others have mentioned that the weak PACE results undermine this model, but I think we can do more to tackle this flawed model head on using PACE, but also the unsuccessful FINE trial that was based on a deconditioning model.

Thought this was interesting too, from one of the papers pointed out by Orla:

We regard CFS as important not only because it represents potentially treatable disability and suffering but also because it provides an example for the positive management of medically unexplained illness in general.

Chronic Fatigue Syndrome: A Practical Guide to Assessment and Management, Sharpe M. Wessely S et al, Gen Hosp Psychiatry 1997:19:3:185-199

 

[Orla]

I thought I would bump this thread in case anyone is new to this area and wondering what the controversy with Simon Wessely is, and also there are some quotes from him in the first few pages. He is like a bad penny or something, constantly promising he is leaving the area and yet he just keeps showing up. He has had something published this year so I will have a read of it and if there are any interesting quotes post them up.