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

[Orla]

Chapter 10 How Breathing Properly Can Help you Relax

[Orla - They try to put symptoms, oops sorry physical sensations, down to hyperventilation. They say..]

Many people with and without CFS dont breathe correctly (p82)

[Orla - They have tips on breathing. Some of it looks ok, but I am not buying the whole hyperventilation thing, and they are certainly exaggerating it's importance. It all fits into their stress model of ME/CFS.

I just came across these 2 articles which are interesting (note who was involved in the studies, and the dates, which are well before the Liverpool booklet). My emphasis in bold]

There was no association between level of functional impairment and degree of hyperventilation. There is only a weak association between hyperventilation and chronic fatigue syndrome. When present, hyperventilation is usually related to known causes of respiratory stimulation such as asthma or panic
Hyperventilation and chronic fatigue syndrome
S.G.N. SAISCH, A. DEALE, W.N. GARDNER and S. WESSLEY
J Med 1994; 87: 63-67
http://qjmed.oxfordjournals.org/cgi/content/abstract/87/1/63

..no significant differences between CFS patients with and CFS patients without hyperventilation were found on severity of fatigue, impairment, number of complaints
The Chronic Fatigue Syndrome (CFS) & hyperventilation
by AU - Bazelmans E, Bleijenberg G, Vercoulen JH, van der Meer JW, Folgering
J Psychosom Res 1998 Mar-Apr;44(3-4):517
http://www.ncbi.nlm.nih.gov/pubmed/9330236

Even though some of the tips in this chapter look ok, for example a relaxation exercise that some people might find useful, I think the whole (over) emphasis on breathing feeds into the control-freakery of the rest of the booklet. It is just one other thing for patients to worry about that they are doing wrong, and something else to criticise them for.

Orla

 

[Orla]

Speaking about Hyperventilation

Someone posted this information on another e-list I was on, when they saw some of the stuff from Liverpool about Hyperventilation. This guy has nothing to do with Liverpool (not that I know of anyway), so I am not suggesting a personal link, but it is an interesting little story about someone who promoted the hyperventilation theory of CFS.

Sometimes these people promote false ideas, they are found out, but the idea still lives on after the debunking. I wonder how many people this guy influenced?

Doctor loses C4 libel case
Paul McCann

Channel 4 has won a 2m libel battle with a Harley Street doctor who the channel claimed rigged tests and misdiagnosed a terminally ill Aids patient. Dr Peter Nixon halted his case against the channel's 1994 programmc, Preying On Hope, after five weeks at the Royal Courts of Justice in London. Dr Nixon has gained a high profile for his theory that a list of diseases including Aids, Gulf War Syndrome, ME and premenstrual tension are attributable to hyperventilation. [Orla - my emphasis]

However Channel 4 found that Dr Nixon rigged his patients' breathing tests by asking them to "breathe as if they were angry". He told lan Hughes, an Aids patient who died last summer, that his fatigue was caused by over breathing. Dr Nixon who had a turnover of more than 100,000 a year, recommends a course of Valium or diazepam and "two weeks of sleeping" as a cure for hyperventilation.

Independent (UK), 16 May 1997, page 2

Cardiologist admits research misconduct

Clare Dyer, legal correspondent, BMJ

Dr Nixon wrote a series of letters in the BMJ, the Lancet and other journals claiming to have found effort syndrome in all or virtually all of the patients who consulted him with diagnoses of chronic fatigue syndrome. But he failed to mention that there was a 55 percent false positive rate in asymptomatic controls.

British Medical Journal VOLUME 314 24 MAY 1997 page1501

Writ large

Marcel Berlins

I 've never seen anything quite like the libel action settlement that was made recently. I say "settlement" but the words "humiliating and comprehensive climbdown" are more appropriate. The case, which attracted surprisingly little media attention, was brought by Dr Peter Nixon against Channel 4, the investigative journalist Duncan Campbell and his TV production company, over a programme which claimed that the doctor had rigged medical tests and published scientific papers riddled with errors.

Guardian (UK), 27 May 1997, G2 supplement.

You can read more from these (short) articles here http://duncan.gn.apc.org/nixon1.htm It is nice to see someone like this getting hammered for once.

Orla

 

[Orla]

Chapter 11 The Last Chapter of CFS

Finally, nearing the end (of the booklet).

In this chapter we will help you to use your understanding of CFS as a solid base from which to re-enter life. (p83)

[Orla - Have we been in outer space or something?]

Understanding CFS is the main weapon against it, enabling recovery (p83).

[Orla - you won't be getting much useful education from this booklet. They go on to talk about wanting people to look at how they lived their lives before and during CFS, to learn about themselves and their lifestyle.]

Before CFS

Many patients report that they were:
...Some having perfectionist tendencies (p84)

[Orla - The word perfectionist is sometimes thrown about a bit. Sometimes people use it just to mean that they have high standards, or like to do work or some activity as well as they can. But the people in this booklet (and sometimes other psychologists) are using it to mean having unattainably high standards all the time which cannot be met. So it is not just about doing something as well as you can, but about setting an impossible standard for oneself and not reaching it.

This is an important distinction. Because striving is normal, but being perfectionist then is abnormal. It could also cause someone to feel exhausted, and worn out mentally, if they were constantly over-pushing themselves, and expecting too much of themselves.

This is an interesting piece from one paper on how perfectionism can be described:

Hamacheck (1978) describes two sorts of perfectionism neurotic and normal. The normal perfectionist is able to derive satisfaction from achievement, and set themselves realistic goals, the goalposts of which can be adjusted to suit the situation. Neurotic perfectionists, on the other hand, often set themselves targets that are unattainable, and, upon failing to meet a desired standard, feel unworthy and lack self esteem. Neurotic perfectionists are motivated by fear of failure and are dissatisfied the majority of the time.

Risk factors for severe ME/CFS, Derek Pheby, Lisa Saffron
Biology and Medicine, Vol 1 (4): 50-74, 2009
http://www.biolmedonline.com/Articles/vol1_4_50-74.pdf

[Orla - - Before everyone has a heart-attack that Pheby study did not correlate severity with perfectionism]

 

[Orla]

Perfectionism and ME/CFS

It used to be a popular idea, and obviously elements of this thinking still remain, that people with ME/CFS werent really sick. They were just expecting too much of themselves and over-pushing themselves, so making themselves exhausted, and putting their perceived failures down to illness instead of re-setting their personal targets.

One example of this sort of thinking can be seen from this quote (I havent seen this full article but have taken this from something Margaret Williams wrote):

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.

Some (as in this Liverpool document) argue that the perfectionism causes stress and the stress causes symptoms.

The research on this area has been somewhat all over the place in terms of results, criteria used and so on. In spite of lack of solid evidence for their views, some from the psycho-social school of thought, still promote the idea that perfectionism is important clinically. (It is probably one of those Mud Sticks scenarios).

Here are some bits and pieces from research which are interesting (Any text in bold emphasised by myself. Note that Wessely is involved in the first study I am quoting and he manages to say something sensible for once).

The stereotype of CFS sufferers as perfectionists with negative attitudes toward psychiatry was not supported.

Personality and social attitudes in chronic fatigue syndrome.
Wood B, Wessely S.
J Psychosom Res. 1999 Oct;47(4):385-97.
http://www.ncbi.nlm.nih.gov/pubmed/10616232

And from the study I quoted in the pervious post (regarding how perfectionism is defined)

... there is little empirical evidence to support the assertion that attitudes, behaviour or underlying personality have a major role indetermining outcomes

perfectionism and cautiousness were not risk factors for severity....Personality type did not appear to constitute a risk factor for severe disease. There was an inverse association between neuroticism and severity..

Risk factors for severe ME/CFS, Derek Pheby, Lisa Saffron
Biology and Medicine, Vol 1 (4): 50-74, 2009
http://www.biolmedonline.com/Articles/vol1_4_50-74.pdf

 

[Orla]

Perfectionism and ME/CFS

I'll be getting back to the Liverpool document in a minute but I couldn't resist posting about this.

Ellen Goudsmit (PhD, Psychology) has this on her website about one study that looked at perfectionism in ME/CFS (my emphasis in bold):

In the past, several studies of dubious quality have suggested that people with CFS have perfectionist personalities. Now a team of experienced British clinicians led by Dr. Blenkiron have replicated this work on 40 patients (CDC criteria 94), using sound measures. To their obvious surprise, the perfectionism scores of the patients were actually lower than those of the healthy controls. (Journal of Nervous and Mental Disease, 1999, 187, 9, 566-571). Another myth bites the dust!
http://freespace.virgin.net/david.axford/update11.htm

I found the abstract for this study, and it looks like they are deciding our lack of perfectionism is a problem! These people are like sulking children, if the results dont come out the way they want, they still try to make out that we have personality flaws, and they twist what negates their theory into some other psycho-social criticism. This is certainly how it looks from the abstract, and from what I can remember on comments about it from when it was published.

Associations between perfectionism, mood, and fatigue in chronic fatigue syndrome: a pilot study.Blenkiron P, Edwards R, Lynch S.
J Nerv Ment Dis. 1999 Sep;187(9):566-70

This study investigated possible associations between perfectionistic personality traits, mood, and fatigue in chronic fatigue syndrome (CFS). Forty CFS sufferers referred to tertiary care and 31 control healthy subjects completed the Multidimensional Perfectionism Scale (MPS), Chalder Fatigue Questionnaire, and Hospital Anxiety and Depression (HAD) scale. Total perfectionism scores did not correlate with fatigue, anxiety, or depression in either group. Other-oriented MPS scores were significantly lower among CFS sufferers (p = .0019), especially women, and correlated negatively with physical fatigue levels overall (R = -0.27, p = .02). Total and socially prescribed MPS scores correlated with age for the CFS group alone (p = .05). Possible reasons why this study did not confirm a positive association between perfectionism and CFS are discussed. The finding that CFS sufferers set lower standards and have lower expectations for significant others may have implications for rehabilitation and recovery from this disorder

http://www.ncbi.nlm.nih.gov/pubmed/10496512

[Orla - So maybe we are not perfectionists, but our lack of perfectionism might interfere with "recovery". We just cannot win with these people.]

 

[Orla]

Ok, back to the Liverpool document.

If you expect 100% of yourself all of the time then

You will spend more energy than those with lower expectations

There will be increased arousal of the nervous system and adrenaline production which causes fatigue, aches, headache, dizziness, palpitations and sore throat. (p84)

[Orla - Blah, blah, blah. Sore throats???]

There is less tolerance of tiredness (p84)

[Orla - Tiredness! I think they are also implying that we are sort of exaggerating (in our own heads) the extent of the problem because of our perfectionism. Because we want to be perfect we cannot afford not to feel 100%. I am not totally sure if this is what they are getting at]

The result is a person who will continue to push themselves. (p84)

High expectations can make you feel like a failure no matter what you do.

If you do not reach your own expectations you can view your effort as a failure.

The constant expectation to be perfect becomes a chronic source of stress when that individual fails to meet his or her high standards (p84)

[Orla - this fits in with what I was saying above about definitions of perfectionism, and how they see perfectionism as relating to CFS]

Ways of coping with Perfectionism

...Increase your awareness of the all-or-nothing way of thinking. (p84)

[Orla - This is reminding me of something Trudie Chalder said in those awful doctor training videos which you can view (or read transcipts of) here

http://www.forums.aboutmecfs.org/sh...English-GP-s-on-how-to-deal-with-CFS-patients

Trudie 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

[Back to Liverpool]

Be realistic about what you can do. Don’t expect too much.

[Orla - Hmm I am guessing this doesn’t include deciding one doesn’t have the energy for an exercise programme.]

 

[Orla]

During and After Recovery

Personality and lifestyle affect the body’s level of nervous system arousal and adrenaline.

...Fear of symptoms
Misinterpreting symptoms as signs of relapse or disease
Monitoring symptoms
Frustration with symptoms and limitations

causes further nervous system arousal with further symptoms that can delay or prevent complete recovery (p84)

[Orla - That is handy, a built in blame-the-patient explanation if their symptoms continue in spite of the programme. If a patient brings up a continuing symptom, they can just say that it is worrying about it that is causing it!

It is interesting that they are trying to re-train “recovered” or “recovering” patients (which is theoretically everyone on this programme, from their point of view) to not see their symptoms as symptoms of disease or relapse, but just the result of stress and worry.

I think this is probably one of the tricks to make their questionnaire based results of their CBT/GET programmes look better. This sort of thing shows the importance of objective outcome measures in trials, otherwise we don’t know are patients really feeling better, or are they just saying they are because CBT has taught them to reinterpret reality, and taught them that thinking about, or worrying about, symptoms is negative and can delay recovery. So this would make patients who had done CBT more likely to put a “positive” spin on their situation, even if it is not the reality.

It reminds me a bit of the Lightening Process where you are supposed to say that you are no longer "doing ME/CFS", and supposed to focus on the “positive”, on what you can do and not what you can't, not talk about symptoms and so on, so that any account from someone who has done it, and who still believes in it, is unreliable.

There is more of this sort of rubbish on ignoring your symptoms later]

 

[fds66]

Thank you Orla for all that hard work. I have read all the way through this now. I dont know what to say about it all really. I have heard it all before and it is amazing to see this kind of thing in print. My own experience tells me that what they say will happen does not happen when I try all these things they are suggesting. In fact it differs so much from this description of a slow steady recovery and only symptoms due to deconditioning that I don't even know where to start. Words fail me.

 

[Orla]

Thanks fds66. Like you say, the patient experience contradicts what these people are saying. I am almost finished, but there are a few other little gems before the end, which I think shows how they manipulate patients about how to interpret their symptoms (the whole booklet is like that, but they gear it up a notch towards the end).

Orla

 

[Orla]

Chapter 11 continued

When individuals return to work or commitments

Avoid returning to work before you are fully fit (p87)

[I wonder what the Department of work and Pensions, and the insurance industry, would make of that suggestion? Many patients cannot work and exercise, or they won’tever get well enough to be considered fully fit, but maybe could work part-time, so long as they rested a lot of the rest of the time. This programme is telling people to get fit first, then work. Ironically if the patients followed this advice to the letter it could delay the return to work while they struggled on trying to get fit. Of course the crazy GET stuff could relapse them anyway so that would also delay any return to work.]

...do remember that everyone, even those who are fit and healthy, get tired at times!
It is a fact of life (p87)

[Orla - So grow up you big wimps, we all get tired]

Beware of Symptom Watching

Most normal people sometimes feel sensations of symptoms during a day, however they do not always take these symptoms as a sign of serious disease or impending collapse (p87)

[Orla – So stop being such a hypochondriac. And how are the results of our studies supposed to come out right if you pay attention to your symptoms?]

Having felt physical symptoms for the duration of CFS, which can be a long time, there is a tendency for some people to be more sensitive to physical sensations and symptoms during recovery.

[Orla – Sensations, that is what we have, not symptoms. Why didn’t I think of that? If I call my symptom a sensation, suddenly it is not so bad, and actually I can feel it drifting away....NOT!

They are thinking along the lines of hypervigliance to bodily sensations nonsense that I have seen elsehwere. A few quotes to illustrate this thinking from elsehwere:

"Many patients become hypervigilant and over-sensitised to physical sensations"

Cognitive behavioural management of the Post-Viral Fatigue Syndrome Simon Wessely, Sue Butler, Trudie Chalder, Anthony David 1991.
Quoted in Quotable Quotes
http://www.investinme.org/IIME ME Quotes Order form.htm

And another lovely quote

"Increased symptom focusing occurs in CFS sufferers;..increased concern leads to selective attention and ‘body watching’: this can intensify the perceived frequency of symptoms, thereby confirming illness beliefs and reinforcing illness behaviour"

Chronic fatigue syndrome: an update Anthony J Cleare, Simon Wessely Update 1996: 14 August: 61.
Quoted in Quotable Quotes
http://www.investinme.org/IIME ME Quotes Order form.htm ]

 

[Orla]

Following on from above (the section Beware Symptom Watching)

These symptoms are inevitable. They are caused by by a combination of:
Increased physical exercise...
Increasing mental activities (pp87-88)

[Orla - So don't blame us or the programme if you feel awful, and don't worry about it, it is perfectly normal]

Thinking about recurring sensations or symptoms can cause frustration or worry which can automatically trigger nervous system arousal and adrenaline and more symptoms. (p88)

[Orla here we go again, thinking about symptoms causes them]

Inaccurate, misleading thoughts and fears about symptoms can hold you back and delay your recovery or make it only partially complete (p88)

[Orla And really it is very inconvenient for us when we are trying to pretend in our research, and everywhere else, that you are better. So pleeease, for your own sake, stop thinking about your symptoms as symptoms, and a sign of disease. If you don't do what you are told you won't get better.

On a serious note, someone is either recovered or not. The term should not be used if the person is still symptomatic, or becomes symptomatic form normal activities.

And following on from the above quote]

Check such thoughts for accuracy and where necessary build alternative accurate responses.
Otherwise these could hold you back, delaying your recovery. (p88)

[Orla - And by accurate we mean anything that helps us look good. Our trial results will look much more impressive if you trick yourself into thinking you are better than you are, and stop thinking that you are sick and, above all, answer our questionnaire questions correctly. Although just as a safety guard we avoid asking about most of your symptoms on our questionnaires, and we are going to avoid any craziness such as having objective outcome measures.]

 

[Orla]

Chapt 11 continued

Opportunities for change!

Many people learn so much about themselves that they go on to find different sorts of employment, career or life activities which are more in keeping with their personality (p88)

[Orla - Also handy for us to keep up the fallacy that you are better, even though you cannot go back to the job you were trained for]

Some Final Important Points to Remember

Pacing yourself is still as vital as ever (p89)

[These people dont understand pacing. GET and pacing do not go together. One is about set programmes and pushing through symptoms, the other is about adjusting activities depending on how you feel. But they mention pacing a few times in the document, and of course some patients will end up pacing rather than doing GET, and it will look in the research/stats that they were helped by GET.]

You cannot afford to break these rules (p89)

[Orla control freaks]

People who are struggling to cope with commitments like work can find it hard to do the programme and may need a time out (p89)

[Orla - The Deptarment of work and pensions wont like that]

Can I Relapse When I am Better?

[Orla - Lightning Process moment here people, you cannot relapse if you do it properly. I hope you guys are paying attention to what causes and perpetuates ME/CFS]

If you can fully understand what factors lead to CFS

Virus, illness, work pressure, stressful life events, multiple commitments/responsibilities, trauma

and which factors perpetuate it:

Irregular activity and rest; lying-in bed; sleeping or cat napping in the day; unhelpful thoughts about symptoms; frustration, worry and fears; symptoms watching and commitments that increase nervous system arousal,

you cannot relapse because you now know how to combat it (p89)

You understand what happened to your body during CFS and why a controlled graduated activity plan and regular night-only sleep pattern was necessary. (p90)

You will know what to do in the future during times of great stress or serious physical illness, when you may feel symptoms similar to those of CFS. (p90)

[Alice in Wonderland logic. Notice that last sentence, you are not having a relapse, or returned CFS symptoms, just symptoms similar to CFS. By that logic no one would ever have a relapse, just similar symptoms.]

Your understanding of CFS is your ultimate weaping against it and prevents any possibility of relapse. (p90)

[Orla - prevents any possibility of relapse?]

 

[Dolphin]

Your understanding of CFS is your ultimate weaping against it and prevents any possibility of relapse. (p90)

[Orla - prevents any possibility of relapse?]

Don't forget that this is even better than Jedi training.
Nothing bad can ever affect you in your life once you've done the training. :Retro wink:

 

[Orla]

Don't forget that this is even better than Jedi training.
Nothing bad can ever affect you in your life once you've done the training. :Retro wink:

I hope that wasn't sarcasm Tom K :Retro mad: :Retro mad: :Retro mad: Otherwise you might be sent to CBT for some cognitive retraining.

Orla

 

[Dolphin]

I hope that wasn't sarcasm Tom K :Retro mad: :Retro mad: :Retro mad: Otherwise you might be sent to CBT for some cognitive retraining.

Orla

:Retro smile:
But my last CBT therapist said I should use humour more. :Retro wink:

 

[V99]

So at the end of CBT, if you relaspse, your symptoms are not CFS, but before CBT they are? But you wont recognise this, so how do they?

 

[Orla]

V99 I think I have the answer:

"When I use a word, " Humpty Dumpty said, in rather a scornful tone, "it means just what I choose it to mean - neither more nor less."

"The question is", said Alice, "whether you can make words mean so many different things"

"The question is," said Humpty Dumpty, "which is to be master - that's all"

from Alice in Wonderland

 

[Min]

...& Dr Myhill has to face the GMC's disciplinary hearing - it should be the doctors who think up and deliver this potentially harmful rubbish

 

[V99]

Humpty dumpty - like it a lot.

I completely agree Min. Has no one tried suing them?

 

[ukxmrv]

The problem V99 is finding lawyers to act for patients and for the doctors involved.

I've tried