Book review of Dr Joe Fitzgibbon's Feeling Tired all the Time

[Orla]

In the spirit of my thread on The Psychiatric view of ME/CFS. What is it? http://forums.phoenixrising.me/index.php?threads/the-psychiatric-view-of-me-cfs-what-is-it.1309/

and my Liverpool Clinic Booklet Thread http://forums.phoenixrising.me/inde...liverpool-cf-cfs-clinic-patient-handout.3066/

I am starting this thread on a book by a doctor local to me in Galway (he also practices in Dublin), Ireland, Dr Joe Fitzgibbon. He tends to be the "go-to" guy for anyone with fatigue as a symptom. He is in private practice. He is a GP with a special interest in allergy and fatigue. He used to teach a module on Chronic Fatigue in a (optional) Diploma in Therapeutics that a couple of dozen Irish GPs took each year (I don't know if he is still doing this).

He produced a book in the 1993 Feeling Tired all the Time, and then republished an update in 2001. This review is on the updated version of the book (as far as I can remember the original was actually better on ME). He was on the airwaves in 2001 plugging his book. He did an interview on national radio and it was awful (all about us having a problem with effort perception and the like). I haven't read the full book, just the sections on ME.

I have never seen him myself as a patient, as I rang the clinic years ago to see what he could offer and was told anti-depressants and graded exercise, so I decided I could do them myself if I wanted to for free via my GP and off my own steam. I am going to post review in sections as it is long and it will be easier to split it into sections. It might take me a few days to post all of it as I need to re-read it (I wrote it years ago) as some of my comments/explanations might be unnecessary here. I am hoping by posting this here so publicly that people who are thinking of seeing him might see the review and get an idea of where he is coming from.

 

[Orla]

Sick or tired?

One of the main things that hit me when reading Joe Fitzgibbon's book is that he seems generally not to distinguish between fatigue and ME/CFS, a medical condition. ME/CFS causes many different symptoms (not just "fatigue") and puts many limitations on sufferers. This is very different from the normal, everyday, tiredness, or fatigue, that basically most healthy people will experience from time to time due to things like overwork, sleep deprivation etc. Some people in the general population will have some sort of chronic fatigue due to ongoing factors like chronic stress, chronic sleep deprivation, or chronic overwork, but annoying as chronic fatigue is, it is not the same at all as ME/CFS, which cannot be cured by a relatively simple change of lifestyle.


As Verillo and Gellman wrote in their book on ME/CFS:

"The term "fatigue" does not do justice to what people with CFIDS actually experience... More than an understatement, however, the word "fatigue" is misleading because its widespread use has led to a dismissive attitude on the part of the medical establishment, which views fatigue as a normal part of modern life.

There is nothing normal or natural about the [symptoms] experienced by people with CFIDS. Unlike the state of tiredness a person might feel after a busy day, the [symptoms] produced by CFIDS. [are] not relieved by a good night’s sleep, a workout, a protein snack, a change in lifestyle, a vacation, or any of the other measures that normally help the healthy person "recharge." The reason none of these measures work is self-evident. CFIDS [symptomatology is] not the natural product of exertion. It is a reflection of the profound metabolic, neurologic, and immunologic dysfunction wrought by illness"

(Verillo and Gellman CFS: A Treatment Guide' 1996, p. 77).

[CFIDS stands for Chronic Fatigue and Immune Dysfunction Syndrome. Some patients and patient organisations use this term instead of CFS as they feel Chronic Fatigue Syndrome is so misleading]


Even in the sections which are meant to be on CFS he keeps referring to the chronically fatigued, chronic fatigue, fatigue and variations of the "F word". He uses chronic fatigue in relation to ME/CFS patients, not just as a description of one symptom, but seemingly as a description of what people with ME/CFS are mainly experiencing.


This confusion is at the heart of the problem I had with the book. His understanding of what people with ME/CFS experience is flawed, I think, because he seems to think that ME/CFS is just a more severe form of “normal” fatigue experienced by everyone else regularly. More importantly, because of this view, his suggestions for how to treat the condition are based on what might work for healthy people, but I think are irrelevant, and even potentially very risky, for many with ME/CFS.


Constantly seeing these references to fatigue (and it really gets irritating after a while) reminded me a bit of a saying I once saw from someone frustrated with people equating ME/CFS with normal fatigue that healthy people get. They said that people with ME/CFS were "Tired of feeling sick, not sick of feeling tired".

 

[Orla]

(I know some off this is general background commenatary, rather than just directly commenting on the book, which a lot of people here will already know. I wrote the review like this so people who knew little or nothing about ME, or the controversies surrounding it, could understand the critique of the book. It is a bit depressing though reading this, which I wrote years ago, and realising that in some ways as we are still facing the same issues now that we were back then.).

The problem with the "F word".

The "F-word" is an expression that people started using in relation to the problem with the name Chronic Fatigue Syndrome and the over-focus on "fatigue" in ME/CFS. As Ciara McLaverty wrote in her article in The Scotsman in 2003, Sick, Not Tired, ‘

"fatigue" or "tiredness" don’t even register on the scale of how life-shattering an illness this can be. Tiredness is to ME what forgetfulness is to Alzheimer’s disease"’ Ciara McLaverty, Sick, Not Tired, The Scotsman in 2003,

When healthy people hear the name Chronic Fatigue Syndrome, it often sounds trivial to them. People often react by saying "I get tired too" and think that is pretty much all there is too it. As the CMO Report (UK) put it in 2002,

'For some the term 'fatigue' is problematic and considered demeaning, because it is common parlance [language] for the physiological experience of tiredness, whereas patients’ experience in CFS/ME is profoundly different." CMO Report (UK), 2002

Doctors can be unsympathetic too, as they don't see it as serious, and as they would all have suffered sleep deprivation and fatigue when training, so they might think that we are wimps for not putting up with it and getting on with things. As Dr. Philip R. Lee, Former US Assistant Secretary of Health (1993-1997) wrote:

"First and foremost, most physicians have no respect for the name and it sends the wrong message.' Dr. Philip R. Lee, Former US Assistant Secretary of Health

Also fatigue, as it is normally used, means a different thing to what is usually meant by fatigue in ME/CFS, so the same word can have different meanings which is confusing. As Dr. David Bell said, fatigue is

"A very inappropriate term for what patients experience. It’s not really fatigue at all, which is defined as a normal recovery state from exertion and that is precisely what does NOT happen in this illness. They may say they’re fatigued, but what’s really restricting their activity may be pain, tremulousness or weakness - a sense that they are on the verge of collapse. That is not fatigue as we commonly think of it." Dr. David Bell (1995).

Unfortunately Joe Fitzgibbon seems to slip into the trap of thinking CFS is very like Chronic Fatigue, even if a more severe version, and his management advice seems to be based on this view.

 

[Orla]

A one size fits all approach?

This confusion over fatigue and ME/CFS unfortunately lends itself to patients with ME/CFS getting advice similar to that given to people who are basically healthy but a bit fatigued. These people will often feel better and more energetic after exercise, so exercise is
sometimes recommended to them to increase their energy levels.

Funnily enough, Joe Fitzgibbon does write about Neurasthenia, a diagnosis from the 19th and early 20th century that fell out of use. This was because it was a very loose diagnosis that turned out to be covering a lot of different conditions (e.g. epilepsy, depression, paralysis), so as people got more accurate labels for their conditions, the diagnosis of Neurasthenia stopped being made. Fitzgibbon writes:

"Neurasthenia was a very large umbrella that covered many diverse
Conditions, and I believe that CFS will turn out to be just as broad a covering." (p.244)

This is an extremely important point, but unfortunately he does not seem to realise the significance of it. Instead of using this lesson from history, and learning that there may be different conditions, or variations of a condition, under the ME/CFS umbrella that might need to be treated differently, he not only lumps all ME/CFS together in terms of management advice, but gives the same basic advice to us as he does to people with fatigue. For example he says elsewhere in the book,"

The principles of treatment for fibromyalgia are very similar to the treatment of CFS and other states of debilitating fatigue of unknown origin" (p.218).

Significantly a lot of the psychiatric research, including trials of CBT and Graded Exercise, into "CFS" is conducted on patients using an extremely loose criteria (the Oxford criteria). With the Oxford criteria patients can get a "diagnosis" of CFS by just having significant chronic fatigue, but they don't have to have typical ME/CFS symptoms such as sore throats, exercise intolerance, etc. Many biomedical researchers are finding different subgroups of patients even within much stricter ME/CFS criteria and they criticise the Oxford criteria as it includes patients who don't have "classic" ME/CFS.

Later on, I will go into more detail about Joe Fitzgibbon’s views on ME/CFS and what is the main management advice he offers (and why I think both his views and management advice, as expressed in this book, are flawed). But now just a little on that he says about lab tests and also supplements, which a lot of people are interested in, and which they might have thought he would have written a good piece on in his section on ME/CFS.

 

[Orla]

Skimming over the interesting stuff (re supplements and treatments)

Unfortunately this book skims over what could have been some of the more interesting issues in a very short section entitled Miscellany (pp275-276). This is where he mentions some supplements or things people with ME/CFS sometimes like to try and might feel they help a bit (e.g. fish oils, Coenzyme Q10 etc). But he only gives this interesting area less than half a page, and with hardly any concrete information. There is a little information on nutritional issues and food intolerances elsewhere in the book, but these sections are not ME/CFS specific.

I feel he could have elaborated much more on supplements people with ME/CFS like to try, even if he felt that he couldn't necessarily recommend them. He could have just given some information from any research, or even what he found in his own practice, even if he stressed that the findings at that stage were inconclusive so that you couldn’t be sure if they would work or not.

His excuse for skimming over these things sounds like a bit of a cop-out to me

"Claims have also been made for many other interventions far too numerous to go through in detail" (p.276)

. He could have gone through the more interesting or promising ones in a little detail. He mentions just a handful of supplements, almost dismissively. He says "

Many other therapies have been advocated for CFS, but very few of these have been subjected to, or withstood, rigorous assessment" (pp275-276).

This may be true, but you could say the same about Graded Exercise, and that didn’t stop him from spending pages and pages talking about that and advocating it!

I feel he does sometimes court the image of himself as into supplements, and slightly "alternative" things, and yet he seems to avoid getting into this in the book. I suppose this is why this piece seems such a let-down. I thought that at least this section might be good, even if I had major problems with the rest of the ME/CFS section. The difference between his enthusiasm for Graded Exercise (which many patients don't find helpful) and supplements really stands out. I wonder is it partly because if you think graded exercise is really going to work, maybe you don’t think other treatments are really that important?

 

[Orla]

What Joe Fitzgibbon says about lab tests

Joe Fitzgibbon argues for limited tests. The list of tests he mentions in the book are very basic, and most people would have them done early on in their condition by a GP to rule out other conditions. I thought, seeing as he has a special interest in ME/CFS that he might have given a more comprehensive list of tests that might be done. He does mention some things, but it is sort of passed over very quickly. He does say other tests could be performed based on history, but in a few places he implies advanced testing is generally not recommended. For example he says:

"The extensive investigation of patients with chronic unexplained fatigue yields no useful information" (p.258)

"extensive investigation without good reason is unhelpful" (p.261)

Sometimes genuinely sympathetic doctors do not actively advocate these more "fancy" tests because of the expense, or because they are too difficult to organise, or because there may not be treatment for some of the abnormalities found at the moment, so they might feel the test results will not be of much help. But I feel that Joe Fitzgibbon could have given examples of research findings here to show what typical abnormalities that have been found in research in ME/CFS patients, to give an idea of things that could be going wrong for patients. By suggesting that a physical exam will be normal, and that extensive investigation doesn't yield useful results and is unhelpful, he could be giving any doctors reading the book the impression that there is not much physically wrong with ME/CFS patients in terms of an ongoing disease/condition.

Unfortunately not running more "fancy" tests on patients can put them in a catch 22 situation. Routine tests done by doctors are usually normal, or fairly normal, in ME/CFS patients, so they can look like there is nothing much wrong with them. Sometimes patients are not believed, for example when the say they have an abnormal response to exercise/activity. But there are some research studies that show abnormal response to exercise, or other abnormalities that might partly explain their symptoms. Some of these tests are very specialised and would not be widely available, but others might not be impossible to get done, if a doctor was really keen and pushed for certain testing to be done. Once a patient had some evidence of abnormalities it could be helpful to them in understanding more about what is going on. It could be useful in terms of getting taken more seriously, or at least not having everything being put down to being "tired". Possibly the patient might try different things, or different medications, if they had more information.

He does mention low blood pressure problems sometimes occur in ME/CFS, but unfortunately puts it down to "deconditioning” (this is pure unproven speculation on his part), so even this could get sort of written off in the mind of any doctors reading it:

"Low blood pressure may be a cause of fatigue in its own right, in which case treatment often leads to recovery; but it may also result from the inactivity and deconditioning that occur in CFS. Muscle-wasting may also occur after prolonged inactivity...It must be said that the physical examination in CFS is usually normal" (p.258)

 

[Woolie]

What cost a CFS diagnosis?

In 1993 I was diagnosed with having CFS 'with some atypical features'. Having been ill for three years, I was relieved to have a name to my disease. But since becoming more severe in the last few years, I've become aware of the dark side of the diagnosis.

When things got worse, I turned in desperation again to my doctor, but he just smiled and said, 'well, there's not really anything we can do for CFS' and 'there won't be anything to see in any tests, because that's the nature of CFS'.

I knew my doc thought there was no justification for specialist referral under our health care system. So I asked if he would refer me to a rheumatologist on a cash-for-consultaton basis. I explained that even if there was a minute chance of finding something treatable, it would be worth the money (I was about to lose my job).

So he did, with the warning that 'I think you need to accept there will be nothing to find'.

To my utter surprise, the rheumatologist took me absolutely seriously. Contrary to what my GP had said, he explained my bloods were not normal. He sent me on to a clinical immunologist - this time under the free public system. Turns out I have consistently elevated platelet counts, and during flares, elevated C reactive protein, and high lymphocyte counts (sometimes the overall count elevated, sometimes only some subsets, like CD4+ T cells). Occasionally, abnormally high neutrophil counts too. A lot of these are apparently signs of recurrent inflammation.

I am still under observation for suspected periodic fever syndrome. We've tried a couple of treatments, and although they haven't worked, I'm grateful that someone is taking my case seriously.

That diagnosis isn't confirmed yet, and I'll post more if and when it is. For now, this is just a story of the evils of the CFS diagnosis. It can cause as much harm as good.

Take home messages for all with CFS:

* Fight to get your basic bloods done regularly (even paying for them, if you have the money)

* Get your blood taken when you're at your absolute worst - even if it means lying on the back seat of a friend's car to get there. Some of the abnormalities in my blood didn't show for years, because I only went for testing when I was up to it.

* Good times to get your blood taken is in the midst of a bad period, and if you have a long bad period, later in the period too. My bloods started showing some new abnormalities after I had been in a major crash for two months.

 

[Woolie]

@Orla, I realise this was a bit of a digression from your review, but reading your posts very much inspired it. The old 'discourage further testing' whatnot.

 

[Orla]

@Orla, I realise this was a bit of a digression from your review, but reading your posts very much inspired it. The old 'discourage further testing' whatnot.

No Problem Woolie, I think the advice in the book is terrible (though I haven't gotten to the really bad stuff yet) and it is good to see a real-life example of the consequences.

 

[Orla]

[I am a bit wiped at the moment but going to post a bit anyway. I was unsure whether to bother posting this next part here, as a lot of people here will know this stuff, but some new people won't and it might be useful for people to have a handy shortened version of what the psychiatric view of ME/CFS is. I think Dr Joe Fitzgibbon adopts this view in his book. A lot of patients think he is sympathetic to us so it is good to get out there exactly what he thinks and whose views he supports.]

The Psychiatric view of ME/CFS

I originally started to write something on this issue when I was writing the review of Dr. Joe Fitzgibbon’s book (as I think he has essentially adopted the psychiatric view of ME/CFS, and I was trying to show how close some of his views are to theirs). Then I decided I might as well try to explain this issue a bit more fully and have a separate piece on it.

Here is a basic summary of what the psychiatric view of ME/CFS is. I put in a few quotes to show a few examples of what the psychiatrists say in their own words.

1. We are basically tired, not sick. They argue that we don't have a disease or medical condition, but just have a more extreme version of fatigue, similar to that experienced by stressed and overworked people in the general population. So ME/CFS is not really that different from what basically healthy people experience, just a little worse.


For example Wessely and Lewis wrote:

"We suggest that many patients currently labelled as having 'CFS' ... may lie at
the extreme end of a continuum that begins with the common feeling of tiredness." Source: The epidemiology of fatigue: more questions than answers. Journal of Epidemiology and Community Health 1992;46:92-97

2. We have a problem with our perception or thinking. What is wrong with us is that we misinterpret normal bodily sensations as evidence of disease. So we think we have symptoms that are not normal, especially after exercise. We have an abnormal view that we are physically sick (they call this an "abnormal illness belief").


Just an example of this view:

"I'm going to talk not about an illness, but about an idea" "I will argue that ME is simply a belief, the belief that one has an illness called ME", from Simon Wessely's talk entitled Microbes, Mental Illness, The Media and ME: The Construction of disease, at the Eliot Slater Memorial Lecture, 1994

3. We also have a problem with our idea of how much energy it takes us to do things (so we are meant to be exaggerating or imagining how much more effort it takes us to do things than a normal healthy person takes) They call this our "abnormal effort perception".

"CFS is a disorder of effort perception" Wessely and Sharpe 2005 in Somatoform Disorders (Volume 9), edited by Mario Maj et al.

4. We tend to over-worry about our symptoms and about what might make our symptoms worse, e.g. exercise. This causes us to have totally exaggerated and irrational fears about doing normal activities. This is sometimes called "catastrophic thinking". Our abnormal fears cause us to unnecessarily restrict our activities. (called phobic avoidance/fear avoidance) or as they claim, we engage in "abnormal illness behaviour" because of our fear of making things worse.

But our catastrophic thinking in turn makes our symptoms worse, through causing us to alter our behaviour, and thus worsening our (alleged) deconditioning (see below).

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

 

[Orla]

Psychiatric view continued....

5. Running "too many" medical/laboratory tests on patients might encourage them in their belief that they have a biological illness. For example,

"The use of extensive laboratory investigation may be psychologically harmful to the patient by reinforcing their beliefs about serious physical disease" Michael Sharpe in British Medical Bulletin, 1991: 47:4:989-1005.

6. Deconditioning theory: We are deconditioned from lack of activity, and this deconditioning causes many of our symptoms. Our phobic/fearful avoidance of exercise and activity makes this problem worse and perpetuates the cycle of disability.

"The perpetuating factors include inactivity, illness beliefs and fear about symptoms, symptom focusing, and emotional state" Wessely and Cleare in Update 1996: 14 August:61.

7. Role of stress and emotions and the benefits of the sick role: We may also have some other stress issues that cause symptoms, but we might not want to admit to having psychological problems, or we don't want to deal with our psychological issues.


Emotional issues may also make us reluctant to get back to our normal life, and so some patients might be adopting the sick role because of all the benefits this gives them (I am not kidding! They actually think we gain from being sick, and that this stops us from getting better).

"Validation is needed from the doctor. Once that is granted, the patient may assume the privileges of the sick role (sympathy, time off work, benefits etc.)"
Simon Wessely in Reviews in Medical Microbiology 1992:3:211-216.

 

[Orla]

More on the benefits of the sick role ( )

What they argue

We might not want to admit that our symptoms are a result of psychological rather than physical factors. This might be because we enjoy the benefits of the sick role too much, and we think we will get more help/ attention/sympathy if people think we have a physical illness. We might also feel that there is no blame/responsibility attached to having something like a virus, and we might think there is with a psychological condition:

"It seems that ME sufferers prefer to feel that they have a 'real' disease - it is better for their self-esteem" Wessely at a talk in Belfast on April 15th, 1992.

"Blaming symptoms on a viral infection conveys certain advantages, irrespective of its validity,...It is also beneficial to self-esteem by protecting the individual from guilt and blame...the victim of a germ infection is therefore blameless" Simon Wessely, Sue Butler, Trudie Chalder and Anthony David, in Post-viral Fatigue Syndrome ed. Jenkins and Mowbray, 1991.

They think that if we don't want to admit to, and deal with, our psychological issues we will probably not get better. This is why they sometimes say that if patients have a strong belief that their condition is physical they are less likely to get better.

"The tendency to interpret symptoms in terms of physical disease rather than emotion is potentially of clinical importance as it has been shown to predict poor outcome" Sharpe et. al Interpretation of symptoms in chronic fatigue syndrome, in Behaviour Research and Therapy, 2001

 

[Orla]

Why they advocate CBT and GET

Many doctors and psychiatrists with the psychiatric view of ME advocate a psychological therapy, Cognitive Behavioural Therapy, to challenge or "abnormal illness beliefs and behaviours" and to get us to deal with our (alleged) psychological problems. They also advocate Graded Exercise (GET) as they think a lot of our symptoms are a result of deconditioning, and that we are making this worse by phobically avoiding exercise.

"The first application of CBT to chronic fatigue syndrome was by Wessely and colleagues (who proposed) a vicious-circle model of the perpetuation of chronic fatigue whereby patients' beliefs about the illness lead to avoidance of activity and this to chronic disability. CBT helps patients re-evaluate their beliefs (and) encourages them to change their behaviour.. Change in belief is an important factor in recovery" Michael Sharpe 1998.

[Note: Not all CBT therapists agree with these extreme views about ME/CFS patients. These views might be more prevalent in the UK, where its main promoters live, and now these extreme views are basically official NHS policy. Doctors or therapists here, unfortunately, could be influenced by thinkers such as Michael Sharpe and Wessely if they read their papers, and if they don’t know about the evidence countering these views.


Some patients here may find they have gone to a CBT therapist who sees they are inclined to overdo it, and who might try to encourage them to pace more - the opposite of what the psychiatrists above try to do. Also CBT therapists (or other types of counsellors or psychologists) not influenced by the above extreme views, might see their role more as helping the patient come to terms with their limitations, rather than trying to pretend these limitations don’t exist.]


Unlike what the psychiatrists above argue, there is evidence of an underlying disease in ME/CFS (so it is not our imagination), and people do genuinely have a problem with exercise. I mention some of these points in the review of Joe Fitzgibbon’s book. I'll get back to his book in the next post.

 

[Woolie]

I'd like to add that GET is founded on the same principles. The primary function of the graded activity is not actually reconditioning. Its to reduce the fear of exercise.

Its intended to be a type of systematic desensitisation therapy, like you might use for a spider phobia. You show the person a picture of a spider a few metres away, and get them accustomed to that mild fear, then you show the picture closer up for progressively more time. Then you bring in the real spider, and repeat.

So substitute exercise for the spider and you have GET.

 

[Orla]

I'd like to add that GET is founded on the same principles. The primary function of the graded activity is not actually reconditioning. Its to reduce the fear of exercise.

Its intended to be a type of systematic desensitisation therapy, like you might use for a spider phobia. You show the person a picture of a spider a few metres away, and get them accustomed to that mild fear, then you show the picture closer up for progressively more time. Then you bring in the real spider, and repeat.

So substitute exercise for the spider and you have GET.

Yeah I think some of them have shifted the argument a bit from what they used to say. It is all a bit mad really. I forget just how off-the-wall some of their thoughts are until I look into it again. No reasoning with these people. They keep producing studies that contradict some of their central tenants, or fail to produce expected results, then they just either ignore the results or shift to some other patient blaming theory.

Edit: Dr Joe Fitzgobbon is all into abnormal effort perception as a major problem for us so I think that would fit very much into the views you are talking about Woolie. I will get back to his book later.

 

[Orla]

Back to the book, Feeling Tired All the Time by Dr Joe Fitzgibbon (2001 edition)

In part one of this book review I mentioned that Dr. Joe Fitzgibbon seems to confuse Chronic Fatigue with ME/CFS. He uses the terms interchangeably. He also gives the same basic advice to people with ME/CFS as he gives to people with unexplained chronic fatigue. I think this is a flawed approach.

From reading the relevant sections of the book (a few times) I think that Dr. Joe Fitzgibbon adopts the psychiatric and behavioural view of ME/CFS. In other words, ME/CFS is seen as resulting mostly from psychiatric and behavioural problems, and the solutions are seen as primarily coming from mental and behavioural changes.

Fitzgibbon comes across in parts of the book as critical of the psychiatric view of ME/CFS, and he writes some sympathetic sounding sections, but his ideas and solutions show he actually agrees with the psychiatric and behavioural model of ME/CFS.

I am not sure that Dr. Joe Fitzgibbon would fully recognise the influence of psychiatric thought on his ideas. But having read a lot of psychiatric ideas written about ME/CFS, and this book, the main ideas are essentially the same.

Even if Dr. Joe Fitzgibbon does not express himself in such an extreme and hostile way as some psychiatrists (see the piece on the psychiatric view of ME/CFS above), he does seem to reflect the essence of their views a lot in his book. He seems to have gone along with their main arguments about what ME/CFS is, and how to deal with it. He seems especially taken with the deconditioning theory, and ideas about abnormal effort perception, which then form a cornerstone of his management strategy for ME/CFS. More of that below.

 

[Orla]

[Apologies for some of the odd formatting in this post. Sometimes I can't get the website to do the size font that I want so I have to go up a size. I am not shouting or anything.]

His comments on the Royal Colleges Report 1996

Consensus view?

Dr. Joe Fitzgibbon seems, from looking at his views in this book, to have been very influenced in his thinking on ME/CFS by a report which was produced in the UK in 1996 by The Royal Colleges of Physicians, Psychiatrists, and General Practitioners. This was a report that promoted the psychiatric view of ME/CFS. Psychiatrists Simon Wessely and Peter White were amongst the authors of the report.

Dr. Joe Fitzgibbon mentions this Royal Colleges Report in his book in a very positive light. He claims that

"By and large, this report was well received and seen as a significant contribution towards consensus. However, objections have been voiced to a perceived over-representation of psychiatric models, and to the blanket recommendation for graded exercise which is considereds by some to be not appropriate for all patients. More of this anon." (p. 246) Feeling Tired all the Time, Dr Joe Fitzgibbon, 2001

Other reactions to the Royal Colleges Report

In fact, far from welcoming the report, or seeing it as a consensus document, the ME/CFS Charities Alliance in the UK criticised the report’s report's

"bias towards psychiatric models of causation and treatment for all patients". ME/CFS Charities Alliance

Dr. Charles Shepherd (then Medical Director of the ME Association in the UK) was quoted as saying

"the committee was rigged, with dissenting voices excluded" Dr Charles Shepherd (The Lancet, Vol 348 October 12, 1996)

Even the report itself seems to sneer at the idea of consensus. It states:

Appropriate clinical practice is not to be defined by special interest groups, nor consensus conferences" Royal Colleges Report on ME/CFS 1996

[By special interest groups, I think they mean patients and people who believe us, not themselves, presumably!]


An Editorial in the Lancet (a UK medical journal) commented on the Report, with a piece entitled Frustrating survey of Chronic Fatigue. This article mentioned that one area of controversy was that the committee that wrote the Report was

"top-heavy with psychiatric experts" Frustrating survey of Chronic Fatigue, The Lancet, Vol 348 October 12, 1996

The Editorial concluded that

"We believe that the report was haphazardly set-up, biased, and inconclusive, and is of little help to patients or their physicians" (Frustrating survey of Chronic Fatigue, The Lancet, Vol 348 October 12, 1996)

[Very strange to see the lancet, and Richard Horton no less, making sensible comments on ME/CFS. How times have changed.]

The Editor of The Lancet, Richard Horton, wrote a piece criticising the report in Observer Life on 23rd March 1997. He wrote:

"The college representatives interpreted every piece of evidence pointing to a biological cause -for instance, a virus - in a negative light."Richard Horton, Observer Life, 23rd March 1997

and he said

"...the larger lesson - namely, that doctors should listen more and pronounce less - has been missed." Richard Horton, Observer Life, 23rd March 1997

Quite Mr Horton, Quite....

There was also criticism of the report outside the UK. The CFIDS Chronicle in the US published a six page critique of the Royal Colleges report, entitled: The Royal Colleges Report on CFS; Insidiously Biased and Potentially Harmful which was written by Dr. Terry Hedrick, PhD., a (sympathetic) psychologist. Hedrick stated that:

"The report's pervasive psychiatric bias will likely fan ongoing controversies, continue misunderstandings about the illness and cause harm to CFS sufferers. General practitioners will need to look elsewhere to obtain a balanced view of the CFS literature." Dr Terry Hedrick, The Royal Colleges Report on CFS; Insidiously Biased and Potentially Harmful

Dr. Joe Fitzgibbon summarises some of what the report says (see pages 245-246). He mentions that according the report

"The majority of patients with CFS have co-morbid psychological conditions. Over half those presenting with CFS have mood disorders and a further quarter show evidence of anxiety of somatisation disorders" Dr Fitzgibbon, commenting on the Royal Colleges Report on ME/CFS (1996), Feeling Tired All the Time, 2001

[i.e. they are claiming that 75% of CFS patients have psychiatric conditions (other than CFS that is)! Somatisation disorder is when physical symptoms result from psychological distress rather than physical illness].

 

[Orla]

More regarding the Royal Colleges Report

I have read the Royal Colleges Report, and it aggressively promotes the psychiatric view of ME/CFS. Here are a few quotes from the report to get an idea of some of the ideas in it (and remember, Joe Fitzgibbon was positive about this report, and gave the impression in his book that it was sympathetic towards patients).

Some Quotes from the Royal Colleges Report (this is the shortened name for this report, which is commonly used. The full names of it is The Joint Report of the UK Royal Colleges of Physicians, Psychiatrists and General Practitioners on Chronic Fatigue Syndrome, October 1996).

"Research suggests that dysfunctional illness beliefs are common in CFS patients. Such inaccurate beliefs might fuel avoidance of activity" The Joint Report of the UK Royal Colleges of Physicians, Psychiatrists and General Practitioners on Chronic Fatigue Syndrome, October 1996

“Research suggests that catastrophic or dysfunctional beliefs are common in CFS patients and are related to disability” The Joint Report of the UK Royal Colleges of Physicians, Psychiatrists and General Practitioners on Chronic Fatigue Syndrome, October 1996

i.e. the more crazy ideas you have the more disabled you are. They are saying that the severity of illness is related to one’s abnormal thinking, so by implication the condition is likely to be a psychiatric one

“The number of psychiatric symptoms increases with the number of somatic (bodily) symptoms” The Joint Report of the UK Royal Colleges of Physicians, Psychiatrists and General Practitioners on Chronic Fatigue Syndrome, October 1996

“At present treatment should address psychological disorder, misunderstandings about the nature of the condition, avoidance of activity, exercise intolerance and sleep disorder." The Joint Report of the UK Royal Colleges of Physicians, Psychiatrists and General Practitioners on Chronic Fatigue Syndrome, October 1996

i.e. the treatment is psychological and behavioural

“We believe that rest per se is contraindicated in CFS” The Joint Report of the UK Royal Colleges of Physicians, Psychiatrists and General Practitioners on Chronic Fatigue Syndrome, October

i.e. they think rest is generally bad for us

The Royal Colleges Report is negative about running a lot of laboratory testing on patients:

"Perform the minimum number of investigations.” The Joint Report of the UK Royal Colleges of Physicians, Psychiatrists and General Practitioners on Chronic Fatigue Syndrome, October 1996

“Unless there are atypical features, limited investigation for alternative diagnoses is appropriate and should be accompanied by assessment of patients’ disability, psychological state and illness beliefs.” The Joint Report of the UK Royal Colleges of Physicians, Psychiatrists and General Practitioners on Chronic Fatigue Syndrome, October 1996

The report is very aggressive in its approach to children.

Regarding children the report says:

"CFS in children covers a broad spectrum of problems, ranging from the minor to the very serious, perhaps even involving the Munchausen's Syndrome by Proxy" The Joint Report of the UK Royal Colleges of Physicians, Psychiatrists and General Practitioners on Chronic Fatigue Syndrome, October 1996

Orla - this is where the parent makes the child sick deliberately for the attention they will get. In other words they are suggesting that in some cases parents might be to blame for the child getting CFS, or a CFS-type condition.

"We also draw attention to the relevant statutory duties imposed on medical practitioners by the School Attendance Act and the Children's Act, and the need to be prepared to act in the best interest of the child if these are being breached" The Joint Report of the UK Royal Colleges of Physicians, Psychiatrists and General Practitioners on Chronic Fatigue Syndrome, October 1996

They are suggesting the child be taken into care in some cases. This has been a big problem in the UK, with children with ME/CFS being threatened with and/or forcibly taken into care, especially if the parents don't agree to psychiatric treatment for their children. It doesn't seem to be a problem in Ireland at the moment, but could become a problem if these views became more widespread. This is one of the reasons we do awareness-raising and respond to what we think is poor media coverage.

“As far as possible we discourage home tuition”The Joint Report of the UK Royal Colleges of Physicians, Psychiatrists and General Practitioners on Chronic Fatigue Syndrome, October 1996

It is often very difficult for children with ME/CFS in the UK to get home tuition, even if they are not well enough to attend school. This is partly because of advice such as that contained in this report strongly discouraging home tuition.

I will mention in a few places in this review where I think Dr. Joe Fitzgibbon may have been influenced by this report, but back to his book for now.

 

[Orla]

[I know it is taking a while for me to post this lengthy review, so apologies for the delays]

Is ME/CFS: "primarily a disturbance of our perception of effort" as Fitzgibbon claims?

Radio show interview
I remember when Dr. Joe Fitzgibbon was interviewed on the Marian Finucane show a few years ago (this was a radio show on one of Ireland's main radio stations at the time. It would have had a high-listenership), promoting the new edition of his book (which I am reviewing here). Marian brought up a story about a colleague of hers who was working in RTE. She said that this person found a particular stairs in RTE (this is the TV station, Radio Telefís Éireann) extremely difficult to climb. I think she said that this person would stand at the bottom of the stairs and just dread climbing it (or something like this). Dr. Joe Fitzgibbon chipped in and said something along the lines that some of us ME/CFS patients just have a perception that things are more of an effort for us than for others. In other words he was saying, it wasn't more difficult for her friend in reality, she just thought it was!

I spent years feeling sorry for this poor person in RTE. I thought that now others working with her would have less sympathy for her, and possibly not make accommodations for her problem with climbing the stairs. All this because Dr. Joe Fitzgibbon, "expert in ME/CFS" had just told the nation that it was her faulty thinking that the problem and not her actual dis/ability.

Anyway, after reading the book I think I can stop worrying too much about this particular individual, as I don’t think it was a real person at all. I think Marian's "friend" was a made-up person, invented for the purpose of the interview, to help Dr. Joe Fitzgibbon get his views across, in language understandable to the public at large. This is because the story and wording are suspiciously close to something in Dr. Joe Fitzgibbons book:

"When healthy people stand at the foot of the stairs, they look up, see a few steps and take them two by two; those with chronic debilitating fatigue look up, see Mount Everest, and sigh." (p12) Feeling Tired all the Time, Dr Joe Fitzgibbon, 2001

Unfortunately people listening to the station might have been influenced by it, so some (real!) patients could have had problems as a result of the interview.

 

[Orla]

What he says in the book
Anyway, whether imaginary friend or not, the point brings us to one of Dr. Joe Fitzgibbon’s central beliefs about ME/CFS. This is, that a big problem for people with ME/CFS is that they have abnormal effort perception. That is, that we think that tasks are more of an effort for us than they really are.

Basically, the general gist of this view is that our imagination exaggerates how much effort we are going to have to put into something, and this makes us think we have a problem, or exaggerates any problem in our heads. Then this makes us feel that we have put more effort into activities. This view reminds me so much of something psychiatrists Simon Wessely and colleagues said about ME/CFS patients

"Patients may think 'I am going to find this impossible' before attempting any activity. This will lead to an upsurge in symptoms on attempting any activity" (Wessely et al 1991).

Dr. Joe Fitzgibbon has a whole chapter (Chapter Two: Normal Energy Levels) on people's perception of effort, and the role of effort perception in fatigue. He is talking about people in general in this chapter, and not just people with ME/CFS, though he refers to us specifically in it at times. He seems to be getting some of these ideas about effort perception from sports psychology (so basically from work/research done on healthy athletes), but he then generalises these findings to all people, including those with ME/CFS. I think this is faulty, as you should not assume that what applies to a healthy person will automatically apply to a sick person, as their problems may not be the same, or their responses to things might not be the same. (I wrote this a few years ago, but I would now also wonder about how good some of this research even is on sports psychology).

Fitzgibbon makes the extraordinary claim that

"chronic fatigue is primarily a disturbance of our perception of effort [my emphasis, Orla]; and it suggests that the worst affected patients may find it hard to shake off the remnants of this perception, even when they are improving in every other respect. A solution to this dilemma is offered in Chapter 25"(p17) Feeling Tired all the Time, Dr Joe Fitzgibbon, 2001

This is just like what psychiatrists Sharpe and Wessely said: "CFS is a disorder of effort perception” (see earlier post on the psychiatric view of ME/CFS.