Cambridge Handbook of Psychology, Health and Medicine (2007) with chapter on CFS from Chalder and Cairns

Esther12

Senior Member (Voting Rights)
I found that this whole book was on-line while I was searching for something else, and thought I'd post it in case others wanted to be annoyed by some poorly justified assertions that will have made life more difficult for a lot of patients.

https://cdchester.co.uk/wp-content/uploads/2018/05/SUSANA1.pdf

The CFS chapter is only short, and I find these sorts of short summaries are good for helping patients understand the way we're treated by GPs, etc.

I was skimming the whole book, and kept finding annoying stuff in different sections too. I'd like to think that a book like this would not get published today, but actually I get the impression that there are swathes of academia which live in a protective bubble, immune from the growing scepticism outsiders view them with.


Chronic fatigue syndrome

Ruth Cairns and Trudie Chalder

King’s College London

Introduction and definitions

Fatigue is a very common complaint but is typically transient, self-
limiting or explained by other circumstances. Chronic fatigue syn-
drome (CFS) is characterized by persistent or relapsing unexplained
fatigue of new or definite onset lasting for at least six months. It is
not a new condition and corresponds very clearly to an illness called
neurasthenia, commonly seen in Europe around the turn of the
twentieth century (Wessely et al., 1998). The terms ‘myalgic enceph-
alomyelitis’ (ME) and ‘post-viral fatigue syndrome’ have also been
used to describe CFS but are misleading and unsatisfactory: ME
implies the occurrence of a distinct pathological process whereas
post-viral fatigue syndrome wrongly suggests that all cases are
preceded by a viral illness.

Operational criteria developed for research purposes by the US
Centres for Disease Control and Prevention (CDC) (Fukuda
et al., 1994) and from Oxford (Sharpe et al., 1991) are now widely used to
define CFS. The American criteria require at least six months of
persistent fatigue causing substantial functional impairment and
at least four somatic symptoms (from a list of eight) occurring
with the fatigue in a 6-month period. The presence of a medical
disorder that explains the prolonged fatigue excludes a patient
from a diagnosis of CFS, as do a number of psychiatric diagnoses.
Although the British definition is similar it differs by requiring both
physical and mental fatigue but no physical symptoms. By including
a requirement for several physical symptoms, the American defini-
tion reflects the belief that an infective or immune process underlies
the syndrome.

Aetiology

The prevalence of CFS has been reported as 0.1–2.6% in community
and primary care-based studies, depending on the criteria used
(Wessely et al., 1997). Women are at higher risk than men
(Relative risk 1.3–1.7) (Wessely, 1995). In relation to aetiology, phys-
iological and psychological factors are thought to work together to
predispose an individual to CFS and to precipitate and perpetuate
the illness (Afari & Buchwald, 2003). For example, many patients
link the onset of their symptoms to infection and while it is unlikely
that serious viral illness acts as a continuing focus of infection in
CFS, it is known to trigger its onset in some individuals (Cleare &
Wessely, 1996). Other risk factors for developing CFS include previ-
ous psychological illness (Wessely et al., 1998), and severe life events
or difficulties in the months before onset (Hatcher & House, 2003;
see ‘Life events and health’).

A wide range of factors may act to perpetuate chronic fatigue.
Coping responses to acute fatigue are important determinants of
prolonged fatigue: extreme physical activity after an acute illness
may allow insufficient time for recovery whereas prolonged bed
rest may cause physical deconditioning and further exacerbate
symptoms. Illness beliefs and the attribution of symptoms to a phys-
ical cause, with minimization of psychological or personal contribu-
tions, are also important and have been related to increased
symptoms and worse outcomes in CFS (Wilson et al., 1994;
see ‘Illness perceptions’). Similarly, catastrophic beliefs that exer-
cise will be damaging or will worsen symptoms lead to the avoid-
ance of physical and mental activities and greater disability
(Petrie et al ., 1995). Disrupted sleep patterns resulting from exces-
sive daytime rest may contribute to fatigue, muscle pain and poor
concentration.

The response and attitudes of others are also important in deter-
mining the course of fatigue. Overly concerned carers may reinforce
patients’ maladaptive beliefs and coping strategies by inadvertently
encouraging disability. Sceptical or stigmatizing reactions from rela-
tives, health professionals or work colleagues can cause frustration
and leave the patient feeling isolated and unsupported (Deale &
Wessely, 2001; Van Houdenhove et al ., 2002; see ‘Stigma’).

Diagnosis

There are no diagnostic signs or symptoms of CFS. The clinical eval-
uation of chronically fatigued patients is aimed at excluding under-
lying medical or psychiatric causes of fatigue. In individuals with
fatigue of more than six months duration a thorough history, phys-
ical examination, routine laboratory tests (full blood count, ESR,
renal, liver and thyroid function and urinary protein and glucose)
and mental state examination are sufficient to reach a diagnosis of
CFS in most cases. Where abnormalities are revealed on physical or
laboratory investigation, further investigations can be helpful to
help establish alternative diagnosis but should otherwise be limited
to avoid the risk of iatrogenic harm. Specialist referral should be
limited to situations where there is an increased probability of an
alternative diagnosis.

The relationship between CFS and psychiatric illness is more
complex. Fatigue is a common symptom in mental illness and
where an individual’s fatigue is fully explained by a specific
psychiatric disorder, a diagnosis of CFS should not be made.
However, psychiatric co-morbidity (particularly with depressive,
somatoform and anxiety disorders) is also common and when pres-
ent should be diagnosed and treated in addition to the symptoms of
CFS. This does not mean that psychiatric disorders are the cause
of CFS and indeed a substantial minority of patients do not fulfil
criteria for any psychiatric diagnosis (Wessely et al., 1998).

Treatment

The evidence suggests that the most effective treatments for CFS are
cognitive behavioural therapy (CBT) and graded exercise therapy (see
chapters on ‘Cognitive behavioural therapy’ and ‘Exercise interven-
tions’). The CBT model attempts to incorporate the heterogenous
nature of the condition and stresses the role of perpetuating factors
(Wessely et al ., 1991). The treatment for CFS therefore involves
planned activity and rest, graded increases in activity, a sleep routine
and cognitive restructuring of unhelpful beliefs and assumptions.
One systematic review showed that CBT administered in specialist
centres by skilled therapists led to improved physical functioning and
quality of life compared with relaxation therapy or standard medical
care (Price & Couper, 2002). In addition, a multi-centre randomized
controlled trial (RCT) involving less experienced CBT therapists has
reported improvements in fatigue severity and self-reported fatigue
compared with guided support and no treatment (Prins et al., 2001).

Graded aerobic exercise involves a structured exercise programme
that is individually tailored to the patient’s current level of activity
and aims to gradually increase his or her aerobic activity. The exer-
cise is usually walking and patients are advised not to exceed the
prescribed exercise duration or intensity. RCTs evaluating graded
exercise therapy have found that it improves measures of fatigue
and physical functioning compared with flexibility training and
relaxation training or general advice (Reid et al., 2004).

There is insufficient evidence to suggest that antidepressants,
corticosteroids or other pharmacological agents are beneficial in
the treatment of CFS and no reliable evidence that dietary supple-
ments, evening primrose oil or intra-muscular magnesium are
helpful (Reid et al., 2004). Prolonged rest cannot be recommended
as a treatment for CFS and may actually perpetuate or increase
fatigue in people recovering from a viral illness. A review of treat-
ments for CFS reported both limited benefits and substantial
adverse effects with immunoglobulin therapy (Rimes & Chalder,
2005). There is insufficient evidence for the use of interferon as an
effective treatment for CFS.

Prognosis

CFS is not associated with an increased mortality rate and rarely
constitutes a missed medical diagnosis when an attempt has been
made to exclude organic illness prior to making the diagnosis.
A recent systematic review of studies describing the prognosis of
CFS identified 14 studies that used operational criteria to define
cohorts of patients with CFS (Cairns & Hotopf, 2005). Full recovery
from untreated CFS is rare and an improvement in symptoms is a
more commonly reported outcome than full recovery. The median
full recovery rate was 5% (range 0–31%) and the median proportion
of patients who improved during follow-up was 39.5% (range
38–64%). Less fatigue severity at baseline, a sense of control over
symptoms and not attributing illness to a physical cause were all
associated with a good outcome. Psychiatric disorder was associated
with poorer outcomes. The review looked at the course of CFS with-
out systematic intervention but as reported above there is now
increasing evidence for the effectiveness of cognitive behavioural
and graded exercise therapies. Further research is necessary to
explore the prognosis of CFS after such treatment has been given.

REFERENCES
Afari, N. & Buchwald, D.
(2003). Chronic
fatigue syndrome: a review.
The American
Journal of Psychiatry, 160, 221–36.

Cairns, R. & Hotopf, M.
(2005). Review
article: the prognosis of chronic fatigue
syndrome.
Occupational Medicine,55,20–31.

Cleare, A.J. & Wessely, S.C.
(1996). Chronic
fatigue syndrome: a stress disorder?
British Journal of Hospital Medicine,55,571–4.

Deale, A. & Wessely, S.
(2001). Patients’
perceptions of medical care in
chronic fatigue syndrome.
Social Science
and Medicine,52, 1859–64.

Fukuda, K., Straus, S., Hickie, I.
et al. (1994).
The chronic fatigue syndrome: a
comprehensive approach to its
definition and study.
Annals of Internal
Medicine,121, 953–9.

Hatcher, S. & House, A.
(2003). Life events,
difficulties and dilemmas in the onset
of chronic fatigue syndrome: a
case-control study.
Psychological Medicine,33, 1185–92.

Petrie, K., Moss-Morris, R. & Weinman, J.
(1995). Catastophic beliefs and their
implications in chronic fatigue syndrome.
Journal of Psychosomatic Research,39,31–7.

Price, J. R. & Couper, J.
(2002). Cognitive
behaviour therapy for CFS. In:
the
cochrane library, Issue 2
. Oxford: Update
Software.

Prins, J. B., Beijenberg, G., Bazelmans, E.
et al
. (2001). Cognitive behaviour
therapy for chronic fatigue syndrome: a
multicentre randomised trial.
The Lancet,357, 841–5.

Reid, S., Chalder, T., Cleare, A., Hotopf, M. &
Wessely, S.
(2004). Chronic fatigue
syndrome.
Clinical Evidence,11, 1–3.

Rimes, K.A. & Chalder, T.
(2005).
Treatments for chronic fatigue syndrome.
Occupational Medicine,55, 32–9.

Sharpe, M., Arcard, L.C., Banatvala, J. E.
et al
. (1991). A report – chronic fatigue
syndrome: guidelines for research.
Journal of the Royal Society of Medicine,84,118–21.

Van Houdenhove, B., Neerinckx, E.,
Onghena, P.
et al
. (2002).
Psychotherapy and Psychosomatics,71,207–13.
 
Every single word of that chapter is a pile of crap. They are not even talking about CFS or ME as we know it. They are talking about fatigued patients most of whom have a comorbid mental disorder. And they specifically state a preference for the Oxford definition. I hope that book is not still being used.

It does make me think that the patients Wessely saw in his early days of inventing his BPS theory were patients with fatiguing mental health problems, not patients with ME. Especially as he was based at a psychiatric clinic.
 
Oh my. The most egregious bit is about the 'caregivers'....
100 years from now, the framing of compassionate supportive care as 'reinforcing
so-called 'maladaptive' beliefs and encouraging disability', will be seen for the pure evil that it really is.
My beliefs are not maladaptive Mrs... YOURS ARE!
Sometimes it becomes extremely difficult not to play into their hands by losing one's rag. Teeth are grinding here.

I skimmed a few other chapters.... Annoying is a gross understatement :banghead::banghead::banghead::banghead: *$!*@&$*!%* oh my goodness they make me want to swear. I don't give a monkeys about all those references, we already know that much of psych research is scientifically bankrupt, & this is, from what i can see, merely a load of opinions presented as facts with the appearance of loads of studies to back it up.
In 50 yrs it will read like the 'low fat diet' nutritional advice of the last 30yrs
(see here https://www.s4me.info/threads/the-s...-rules-of-human-social-life.7565/#post-134429)
But God help us all in the meantime :(
 
Maddening. May those psychs and shrinks or their loved ones get one of our illnesses. Then let's talk. Until then, trust what the patient says.

Reminds me of my new primary doc. I describe my pain (thus justifying the drugs that enhance GABA, including one low-dose opioid). To which he nods with sympathetic understanding and utters: have you tried massage?
Yeah, bro. Massage worsens it x50, as does ole acupuncture. Twenty some years of trying stuff. I know what works and what does not. I am going to write my medical memoir and send copies to researchers. And thrust one in my primary's hands. Read, as God said to Mohamed (I think that's how it goes).

Christ.

I crashed today. Dizzy and body just caved. Never happened that way before. Must be psychosomatic, eh? I'm beginning to believe after all these years that I do indeed have CFS, however mild.
 
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Just selected one of the comments: about misdiagnosis is rare - in other words they say they don't overlook other health issues - yes they do, some 40 percent of the time re studies to this effect.

Very concerning to think this book may be used for a long time. What twigs practitioners to consult newer, appropriate medical information, especially if governments stall in up dating health care workers? Some who don't notice the scientific advances in this field will continue following this nonsense, and possibly harming their patients.
 
Interesting to read the contribution by Bass on Psychosomatics-in particular page 196, on the count, where chronic fatigue syndrome is referred to as a functional somatic condition. Now, we know from Jenkins that this is what was taught and that the functional illness was hysteria. (Post viral fatigue syndrome (ME) 1991 eds Rachel Jenkins and James Mowbray. Introduction @p25.)
 
Yes pretty much total crap. You can see the circles she mist exist in to be so out of touch with the biomedical approach to the illness and patients themselves. She claims ME and PVS are inaccurate yet immediately just reduces her CFS to CF, a wildly inaccurate framing and presentation of ME. She clearly doesn’t like fukuda which was far better than oxford criteria and at least recognised symptom clusters beyond fatigue.

Full of assumptions, paraphrasing ,” they take daytime rest which affects sleep “, “beliefs that activity will harm are catastrophic”. Anyone who thinks ME can be adequately captured and diagnosed with oxford is just way off but there hasn’t been enough in the UK vocal consistent opposition to this underlying psychological framing of our illness or their criteria.
She’s applying her dumb approach to all fatigue in illness though I think. CBT is the answer to every question isn’t it.
 
F
She claims ME and PVS are inaccurate yet immediately just reduces her CFS to CF, a wildly inaccurate framing and presentation of ME.

Fatigue is the Central Africa of medicine, an unexplored territory which few men enter.

Putting aside all temptation to make a joke about the Lightning Process and its originator, this is the quotation with which Wessely, Hotopf and Sharpe begin the Preface of their book Chronic fatigue and its syndromes. This comes from Beard's 1869 paper, Neurasthenia, or nervous exhaustion. Fatigue is all that it is about.
 
F

Fatigue is the Central Africa of medicine, an unexplored territory which few men enter.

Putting aside all temptation to make a joke about the Lightning Process and its originator, this is the quotation with which Wessely, Hotopf and Sharpe begin the Preface of their book Chronic fatigue and its syndromes. This comes from Beard's 1869 paper, Neurasthenia, or nervous exhaustion. Fatigue is all that it is about.
That’s such a Wesselyian quote. No doubt like former colonialists he thought to claim and conquer that territory. He would say the natives too savage.

So wessely was quoting the psychiatrist who reduced us to hysterics? What a shame fatigue wasn’t viewed as a physical symptom like pain.
 
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Every single word of that chapter is a pile of crap. They are not even talking about CFS or ME as we know it. They are talking about fatigued patients most of whom have a comorbid mental disorder.

No. The problem isn't merely conflation of mental disorders with CFS. They're talking about poor quality easily-biased research and claiming it is somehow generalisable/conclusive evidence.
 
Unfortunately, pain is also seen as psychogenic.

For a few months I saw a health professional who misdiagnosed me, albeit still with a significant physical problem, unrelated to ME. Even though I said I was frequently in pain from this problem, this practitioner essentially told me I wasn't, and indirectly warned me not to tell other practitioners I was in pain, because this diagnosis shouldn't cause pain (the wrong diagnosis).

I eventually saw another practitioner higher up the chain of command, who really misdiagnosed me - said there's nothing wrong, and completely ignored my pain.

Finally saw another equivalent higher up the chain practitioner who correctly diagnosed, and fixed the problem. I'm "lucky", this took less than 18 months to fix!
 
I believe the proper scientific term for this is: dumpster fire.

CFS is not associated with an increased mortality rate
Something for which data do not exist, it's a baseless assertion. This is exactly the kind of thinking that lead some to claim that it does not affect children, until someone actually checked and now of course some of the same people who claimed it did not affect children have now turned their gaze to those easier marks who are less likely to complain, especially when parents are threatened with having their children taken away if they dare complain.

and rarely constitutes a missed medical diagnosis
I know that my keys are not in the basement because I did not look in the basement.

when an attempt has been made to exclude organic illness prior to making the diagnosis.
That would be great if that was the case but the very same people saying that nonsense are also saying that no attempt should be made to diagnose as it itself reinforces the "illness belief". CFS is a grab bag of the undiagnosed and misdiagnosed, it's guaranteed that most will eventually have an actual diagnosis but since recommendations are to not waste time on "heartsink patients" this rarely happens.

This is embarrassing garbage. It's also nearly identical to past embarrassing garbage that argued the exact same thing about other diseases pre-breakthrough.
 
Unfortunately, pain is also seen as psychogenic.

For a few months I saw a health professional who misdiagnosed me, albeit still with a significant physical problem, unrelated to ME. Even though I said I was frequently in pain from this problem, this practitioner essentially told me I wasn't, and indirectly warned me not to tell other practitioners I was in pain, because this diagnosis shouldn't cause pain (the wrong diagnosis).

I eventually saw another practitioner higher up the chain of command, who really misdiagnosed me - said there's nothing wrong, and completely ignored my pain.

Finally saw another equivalent higher up the chain practitioner who correctly diagnosed, and fixed the problem. I'm "lucky", this took less than 18 months to fix!

I do accept pain can be ascribed to psychogenic cause , unfortunately that seems to be the medical default. But pain from recognised illness is more respected, there’s been research and multiple drug options available.

Even in recognised Illness like MS and cancer it seems fatigue has been hugely under researched despite patient complaints on it, and is still often part psychologised or left to psychologists to manage whilst the scientists focus on the trying to underlying disease. That might seem fair enough as ‘disease cure ends fatigue” but I think fatigue has been “unsexy” across the board and could have been investigated and respected more which would have benefitted us or we could have been investigated more which would have benefited them.
.
 
I agree @Cinders66, pain in recognized diseases is respected. So is fatigue, in say a cancer diagnosis.

Constant, or frequent pain can be fatiguing. I am not making light of this, not at all, when I say, because both these symtpoms are hard to understand, and are stigmatized, means more hurdles to overcome to get accurate medical treatment.

And I agree, fatigue is not seen as sexy. Many make light of it, which is one of the problems for us with the stupid, crap label "chronic fatigue syndrome".
 
"Dumpster fire, garbage can, waste basket diagnosis indeed!"

Misdiagnosis on a grand scale? on the ME Research UK website:

http://www.meresearch.org.uk/information/publications/misdiagnosis-on-a-grand-scale/

Two studies cited: 1) 2010 - 40% of referrals to the Newscastle CFS/ME Clinical Service "were eventually diagnosed with other conditions" - primary sleep disorder, PTSD, cardiovascular disorders, and psychological/psychiatric illnesses.

2) 2012 - GP's referrals to specialist clinic at St Bartholomew's Hospital, London - only 54% confirmed as "CFS" patients. Corrected diagnoses included:" sleep disorder, endocrine disorders, nutritional disorders and pain disorders, and psychiatric disorders."

Other alternate/corrected diagnoses noted in this article, but outside these two studies include:" Addison's disease, MS, sleep apnoea, primary mitochondrial disease, primary liver disease, and paranoid schizophrenia."

"These reports provide clear, formal evidence that almost half of patients referred from primary care with a diagnosis of ME/CFS actually have something else wrong with them – a fact that is not discovered until they are lucky enough to be seen at a specialist clinic. This seems like misdiagnosis on a grand scale."

Apparently, some health professionals view pwME as so mentally ill, they can't differentiate paranoid schizophrenia from ME!
 
As posted in the other thread:

Coding of "Neurasthenia" in classification and terminology systems:

ICD-10:


In ICD-10 (endorsed by the Forty-third World Health Assembly in 1990), postviral fatigue syndrome (G93.3) is specified as an Exclusion under F48.0 Neurasthenia in ICD-10 Volume 1: The Tabular List:

https://icd.who.int/browse10/2016/en#/F48.0

Chronic fatigue syndrome
is indexed to the G93.3 Tabular List code.


Extract: NHS Digital, National Clinical Standards ICD-10 5th Edition, Page 84:

https://hscic.kahootz.com/gf2.ti/f/...oding_Standards_ICD10_reference_book_2019.pdf

clinical-standards-5th-edition.png



ICD-11:


For ICD-11, the legacy entity Neurasthenia has been subsumed and replaced along with most of the ICD-10 Somatoform disorders with the new single category, 6C20 Bodily distress disorder (with three coded-for severity specifiers).


SNOMED CT:

SNOMED CT is a standardized electronic terminology system for recording and sharing symptoms, diagnoses, clinical findings, procedures etc in primary and secondary care and across other health care settings.

Since April 2018, SNOMED CT UK Edition has been the mandatory terminology system for use in NHS primary care, replacing the Read Code (CTV3) terminology which is now retired. SNOMED CT UK Edition is scheduled for adoption across all NHS clinical settings by 2020.


For the SNOMED CT terminology system, the SCTID Concept term Neurasthenia and its associated terms were retired ("Inactive") from the terminology system a number of years ago.

Although the various SNOMED CT national editions absorbed the retirement of this Concept term in their next releases, the Netherlands Edition had retained the term "neurasthenie" under the chronischevermoeidheidssyndroom (CVS) Synonyms list, coded to the SCTID: 52702003 CVS Concept code and marked as exclusive to the Netherlands national edition.

In October 2018, @mecvsnieuws on Twitter approached Pim Volkert (Coördinator terminologie bij Nictiz) with a request for retirement of the term neurasthenie from the Synonyms list for Concept SCTID: 52702003 chronischevermoeidheidssyndroom for consistency with the International Edition, with other national extensions, and with the WHO's ICD-10.

As reported in this thread, this request and accompanying rationale was accepted and approved for implementation in the March 31, 2019 release.

For the March 2019 release of the SNOMED CT Netherlands Edition, the term neurasthenie has been deleted from under the chronischevermoeidheidssyndroom (CVS) Synonyms list and marked as "Inactive".
 
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