Those Unsinkable Rubber Ducks

Those Unsinkable Rubber Ducks :
a selection of rapid responses to Santhouse et al, Chronic fatigue
syndrome BMJ 2010; 340: c738

Greg Crowhurst Feb26th 2010 (permission to repost)

“The advent of every major juncture in man's understanding of himself
and his environment, every staging post on the journey of knowledge
that we all have the right to call science, was heralded by the sounds
of scoffs and guffaws. In the words of the German philosopher Arthur
Schopenhauer, 'All truth passes through three stages. First it is
ridiculed. Second, it is violently opposed. Third, it is accepted as
self-evident.”(p5)

This observation from Christopher Brookmyre’s “Attack of the
Unsinkable Rubber Ducks”(Abacus 2007) is directed at those who keep
on believing in a theory, like the psychosocial theory of ME, despite
all the evidence to the contrary.

The “unsinkable rubber duck” principle is this : Whenever you
think you have sunk them, they just bob back up again, like Santhouse
et al , in their recent BMJ editorial Chronic fatigue syndrome BMJ
2010; 340: c738 , a “textbook example of group-think,” which relies
upon “the asssumption that any differences within the CFS population
are of no clinical significance”, that CFS is an entity with no
ongoing pathology such as infection,” ( Goudsmit ).”

“What I don't see “, said Goudsmit (Why do doctors refuse to believe
patients? ) “is an impartial, evidence-based approach.. ….I see an
'obsession' with CBT and GET. I understand it, but the scientific
process requires more objectivity and we will all be better off if we
accept that there's more to CFS than fatigue. “
As Latta (Using the correct tool for the right job ) remarked :
“Unfortunately CFS has come to be an umbrella term used to describe
anything from people who are merely tired and weary all the way to
severely sick patients with an organic brain disease (CFS WHO ICD-10
G93.3 Vol.3 pg 528).

Kinlon ( Do CBT and GET really work for Chronic Fatigue Syndrome?
)pointed out that : “Santhouse and colleagues (1) claim that
treatments such as cognitive behavioural therapy (CBT) and graded
exercise therapy (GET) “have been shown to work” in Chronic Fatigue
Syndrome (CFS)/Myalgic Encephalomyelitis (ME).i However, what the
literature actually shows is that such therapies have an effect, which
is not necessarily the same thing as “working”: a meta-analysis
calculated the average Cohen’s d effect size across various CBT and
GET studies to be 0.48, which would generally be described as a small
effect size(2)

It is disingenuous to claim that the use of CBT and GET “in a group
of patients who cannot normally travel to hospital to access them, is
going to produce a 'dramatic recovery'. “ wrote Shepherd, (Severely
affected - severely neglected ) “A considerable amount of accumulating
patient evidence(3) indicates that a significant proportion of people
with ME/CFS find that the two behavioural treatments being recommended
- cognitive behaviour therapy (CBT) and graded exercise therapy (GET)
- are either ineffective (ie CBT) or harmful (ie GET). And the only
research so far to investigate potential risk factors which are
involved in the development of severe ME/CFS 4) has concluded that
there is no evidence to implicate personality or neurotic traits.

Twisk (CBT/GET is ineffective and potentially harmful. ME/CFS
patients seem to die considerably younger. )stressed(5) (6) (7) how
“CBT/GET has a negative effect on the symptomology of many ME/CFS
patients (pain, muscle weakness, neurocognitive impairment etc.)

This can be explained by the fact that exertion, and thus GET,
intensifies the pre-existing pathophysiology: inflammation, immune
dysfunction, immunosuppression, (persistent) infections, oxidative and
nitrosative stress and their sequels, e.g. mitochondrial
damage/dysfunction and a disturbed circulation (8) (9) “ Twisk also
corrects Santhouse's incorrect assertion that 'the greatest risk to
life is likely to be suicide' and 'this is often linked to depression
that can be effectively treated'.

A study into the causes of death by a Jason (10) established that
±20% of the patients had died from cancer, ±20% had died as the
consequence of heart failure, and ±20% as a result of suicide.

The mean age of those who died from cancer and suicide was 47.8 and
39.3 years, respectively, which is ±24 years younger than those who
died from cancer and suicide in the general population.

Pheby ( No room for complacency )questioned Santhouse's citation of a
recent systematic review (11) “ as evidence of the effectiveness of
behavioural interventions such as cognitive behaviour therapy and
graded exercise in CFS/ME, yet that same review states: “The protocols
for many clinical studies require patients to attend a clinic for
treatment and/or assessment. These conditions may exclude people
severely affected with CFS/ME from taking part and hence bias the
sample towards those with less severe symptoms.” Indeed, the only
evidence cited by Santhouse et al that such interventions may benefit
the severely affected is an uncontrolled pilot study of only nineteen
patients, published more than a decade ago (12).

Glen (Determined individual with CFS/ME ), an ME patient outlined how
“ The only help offered to me on the NHS has been CBT and a Vitamin D
test. The conclusion of an assessment for CBT was that as "a highly
resilient and determined individual" I would not be offered a course
of CBT.

It is evident to me that there is currently nothing beyond the obvious
(pacing, diet, keeping motivated etc.) that I, or anyone else, can do
to help me recover. “
Barclay (What can they offer to counter defeatism )poignantly
recounted how : “My own experience is that when I am bedbound or
housebound by the physical symptoms of the disease, NHS care ceases.

While I lie trapped in my own home, my teeth are rotting in my head, I
suffer fungal problems as I am unable to bath, sinus infections with
green mucous eat through my septum and choke me. Food poisoning four
years ago has left me often incontinent and I live with constant sore
throats and painful raised glands with lumps, in a perpetual
continuation of the virus that heralded the start of the disease.

I need specialist help to tackle these physical problems beyond what
my GP can offer.
The lack of practical medical help, the passing decades, the
frustration of being unable to keep clean, to cook and eat and the
isolation imposed by being unable to walk, speak, listen, type and
read at will would cause an emotional reaction in the most stoic
individual and for that result from a lack of care to be then
classified as simply depression seems shallow.

The last thing I welcome in this position is more information on CBT,
graded exercise or pacing, having already had mixed (on balance
negative) experiences with them. “

Bartholomew (Welcomed common sense and clarity )described how “I am
struggling to cope with my condition which has been getting steadily
worse since my second URT infection nearly two years ago. From a
dynamic, active person, optimistic about my future, I have become a
shuffling recluse unable to keep myself, my clothes or my house clean.
I live alone and cannot afford paid help as I lost my NHS job because
of my ME.
Break a leg and you are treated with traction and a plaster cast. You
will provoke commiseration and you can look forward to the leg
healing.

A diagnosis of asthma will engender concern and will be met with
sympathy and an inhaler.
Have the misfortune to develop ME and you find yourself without
treatment, without answers, without understanding, without empathy,
without a cure. For the record, ME is not a lifestyle choice or a
psychiatric condition (check it out with the WHO)! “

Belgian ME patient Hugaerts ( The Belgian experiment with CBT and GET
) was scathing about the supposed effectiveness of CBT and GET : “In
Belgium, during 5 years, the Belgian Government subsidized 5 “CFS
Reference Centers” who treated patients solely with CBT/GET. They used
the Fukuda criteria for selection. Every year, 1.5 million Euro was
distributed to the 5 centers. This makes a total of 7.5 million Euro
during 5 years. 800 patients were treated during this period.
The Belgian Health Care Knowledge Centre (KCE) reviewed the result
after 5 years (2009)( The KCE is a semi-governmental institution which
produces analyses and studies in different research of health topics.
Conclusion :
patients feeling better : 6 %
Patients feeling worse : 38 %
Patients with no result, not better nor worse : the remaining 56 %
The ultimate goal of the Reference Centers and their CBT/GET therapy
was not met: NOT ONE PATIENT RESUMED WORK.
This confirms that CBT/GET is ineffectively and possibly harmful.”

Munn ( It is more than defeatism which greets patients with ME )asked
: “Why as Doctors do we find this condition so hard to understand? We
all accept the effect the psyche has on the physical so why can't we
accept a condition which transcends both? I have been met by
colleagues who have told me I 'do not want to be labelled as an ME
sufferer and should not admit to it'. I have had it discounted from my
past medical history as if it didn't exist. I have sat in a room where
colleagues have made the most appalling assumptions and
generalisations about ME sufferers and discounted ME sufferers'
concerns about the side effects of a drug as if their views did not
matter. “

Grant(Chronic Fatigue Syndrome, mitochondrial dysfunction and toxic
metals ) pointed out how : “Most biochemists may still believe that
there is no known cause, no diagnostic test, and no satisfactory
treatment for Chronic Fatigue Syndrome(CFS) or Myalgic Encephalitis
(ME). This is no longer true as a seminal 2009 publication from
Myhill, Booth and McLaren-Howard found the severity of the illness
correlates highly significantly with the degree of mitochondrial
dysfunction (p<0.001).(13 )

Thorpe (triumphalism not defeatism ) sees “no defeatism in the words
and actions of those medics who acknowledge recent biomedical
evidence. They are buzzing with excitement and triumphalism.( See
references below 14)They show the need to investigate the pathology of
the illness more thoroughly and they show the need to split out the
separate illnesses that are emerging from the dustbin diagnosis of
CFS. There is hope for a diagnostic test

Spence ( Not the Answer to the Biomedical Enigma )stressed how “ The
BMJ Editorial by three eminent London psychiatrists claims "an air of
defeatism" about ME/CFS is obscuring the fact that there are
treatments which "have been shown to work" and which are recommended
by the National Institute for Clinical Excellence (NICE) in Clinical
Guideline 53. The reality is less clear-cut, however. The treatments
referred to are cognitive behavioural therapy (CBT; a form of
psychotherapy designed to manage dysfunctional illness beliefs) and
graded exercise therapy (used as part of a biopsychosocial programme
predicated on a model of physical deconditioning). Both
cognitive–behavioural approaches have a general, non-specific
applicability and are used increasingly as symptom management and
coping strategies in a range of conditions.

In the context of ME/CFS, cognitive–behavioural approaches are not
evidence-based to a level where they can be claimed to be specific
“treatments” – an unsurprising observation given that this “syndrome”
diagnosis delivers a heterogeneous population widely believed to
contain distinct clinical sub-groups (15). The systematic review
underpinning NICE Guideline 53 found 10 randomized clinical trials on
adults, 3 of these negative with the remainder showing mild to modest
positive, though non- curative, results. Recent overviews have
confirmed this; a recent Cochrane review (16) found 15 studies of CBT
(including controlled clinical trials) for ME/CFS and took a more
cautious view of the evidence and its limitations than the authors of
the BMJ Editorial, as did a second recent review (17). This latter
meta-analysis of 13 clinical trials (representing 1371 patients) found
a very mixed bag of studies and reported an overall effect size that
was small–moderate by usual standards. Not for nothing did NICE
Guideline 53 (Full Guidelines, section 6.3.8, pp 252) state that it
did “not regard CBT or other behavioural therapies as curative or
directed at the underlying disease process”.

Regarding CBT and GET , Heath ( CBT and GET taking up valuable funds )
vividly described how “I undertook the course of CBT offered by King's
College Hospital with an open mind and a degree of optimism. I
finished the course feeling depressed and like a failure. I now view
CBT as akin to other quack 'therapies' such as the Lightening Process.
Your recovery is in your hands. If you don't improve, you're a
failure. My therapist seemed genuinely confused when I did not make
any improvement, and in fact suffered my worst relapse to date whilst
endeavouring, against my better instincts, to adhere to their GET and
sleep programme. I completed the course doing less physical activity
than when I had started, and feeling guilty for my own 'unhelpful
illness beliefs'.

Cox ( What is chronic fatigue and what is M.E.? )movingly recounted
how “ Throughout the period of Lynn Gilderdale’s illness, a number of
researchers have seemed solely intent on promoting and perpetuating a
particular psychosocial illness model - often making extravagant
claims for interventions such as CBT and GET, which upon close
scrutiny often show that the effects have at best been modest and
sometimes harmful, with outcome measurements often unsatisfactorily
subjective. Frequently studies have excluded the severely affected.

It is also sobering to reflect that Lynn Gilderdale became ill 4 years
before the Royal Colleges Report (18); 10 yrs before the Chief Medical
Officer’s Report (19); 11 years before the (to date unproductive)
Medical Research Council’s Research Strategy for CFS/ME (20) and as we
all too aware, died tragically 2 years after the publication of the
NICE Guidelines (21 - which had little to say, or offer, the most
severely affected of patients.

Crowhurst (A dangerous path to take ) pointed to how : “What is
missing from this article is any acknowledgement that it is the
psychiatric lobby's influence in ME that has led to the confusion over
what ME is and the lack of physical treatment and the lack of proper
biomedical investigations. The psychiatric approach is to deny the
physical reality of an ME patient's illness and to promote the
unproven view that a person is ill because of maladaptive thinking and
de- conditioning. “

Australian physician Andrew (I adore CBT ) in a widely welcomed
response , described how “The basis of CBT for ME/CFS is fantastic.
First, you blame the patient for his illness, and then when CBT
doesn't cure him, you blame him for not being motivated. When I'm fit
and well again, I will use this same principle when I see a patient
with for example, a severe infection. If the antibiotic I have
prescribed, doesn't solve the problem, then I will blame the patient.
That the culture has shown that I prescribed the wrong treatment, is
something I will ignore. “

Robinson ("It's wrong and misguided to "Imagine"" ) described the lack
of service provision for the severely affected “There are
approximately 60, 000 severely affected patients, in my experience
(since 1997), most of who receive little or no support from statutory
services. Most severely affected, housebound patients, are nursed and
cared for by their families.
In my experience, those that approach services such as Social Care, or
other “specialist services” (such as yours) which are sometimes
requested by desperate patients with secondary needs, are, more often
than not, refused even an assessment. Reasons given, Not meeting ”the
criteria”for assessment is the norm, or following assessment, being
being turned down for support due to ME patients “not meeting the
criteria.”- even though these patients have “critical and substantial"
needs, including secondary well being needs.”

Former Staff Nurse Stableforth ( High time to broaden the field )is
very concerned about “The lack of a basic diagnostic test and
biomedical treatment is what is most likely to be hampering physicians
(and insurers), not defeatism as such. This can only be gained by
serious investigation into underlying aetiology - not by application
of general 'management tools'. Patients across the entire spectrum of
CFS/ME have many disabling physical abnormalities other than simple
‘fatigue’ (which in itself fails to describe the experience). If we
continue to focus simply on ‘fatigue’ and to limit physicians to basic
tests, then as some biomedical researchers have pointed out, ME/CFS
can only effectively become a ‘dustbin diagnosis’.

By way of example, an equally damaging illness Haemochromatosis also
can present with extreme fatigue, headaches, pain and other symptoms
common to CFS and has been mistaken for ‘CFS’, (according to one GP
who diagnosed a friend of mine). ‘Fatigue’ can be seriously
misconstrued when only the usual tests are applied – the Serum
Ferritin testing he required is also not standard – and patients are
misdiagnosed. However, at least there is a test for haemochromatosis
and once identified, referral to a hospital consultant and full
biomedical treatment in specialist centre. Imagine if his GP had
stopped looking? One shudders to imagine the further damage to his
organs had only CBT and GET been recommended. If only CFS patients
could be so lucky.

Having worked previously as an NHS Staff Nurse (Coronary Care) and
coming from a medical family I truly believed that UK medicine in the
NHS was cutting edge. However once diagnosed with CFS/PVF/ME, I was
shocked to find that a highly trained group of professionals whose
intelligence I had always respected had no answers, but most
damagingly, weren’t prepared to look much further for them (and was in
one case breathtakingly dismissive). The ‘pioneering spirit of the
scientists of old’ appears to have become bogged down in ‘legal
guidelines’ and even individual well intentioned doctors are
contrained by budgets, accepted treatments for accepted ICD codes,
insurance purposes and so forth. CFS patients find that in spite of
their insistence that something more serious and physical is afoot, in
practical reality there is so little help to get to the bottom of it.
And once this happens, the patient effectively becomes sidelined from
the whole medical process. “

Morris, a psychologist suggests (CBT The Mythology ) that Santhouse's
article “ trivialises the severity of the illness and contains a
number of factual inaccuracies.
NICE is selectively quoted.Nice actually point out that CFS/ME is a
very serious real illness of yet unknown origin and can be more
disabling as multiple sclerosis or late stage aids---There is no known
cure or effective treatment.
This should have been quoted.
NICE specifically make the point that CBT is not a treatment for the
symptoms but an aid to help patients come to terms with their illness.
Is this what is meant by" working"?
CBT has never shown any objective benefit “

Jones (Shedding a little more light on 'Defeatism ) drew attention to
the fact that : “With regard to the specific case of Lynn Gilderdale,
it should be born in mind that here a vaccination as well as
infections were linked to the onset of her illness which resulted in
progressive serious health problems. Her condition was so severe that
she was hospitalised 50 times during her 17 years' suffering, as the
Panorama programme revealed. - The proximity of immunisations with
onset of ME or an exacerbation of the condition have been documented
(22,23). An earlier longitudinal study from the general medical
literature recorded the fact that most hospital patients with
post-vaccinal neuropathies had a concomitant illness (24).

To discount factors like infections, immunisations, antibiotics, oral
contraceptives for women and drugs in general, and/or exposure to
toxic substances (e.g. OP pesticides, toxic metals etc) in the
aetiology of this disease is tantamount to ignoring key factors in a
complex equation, in my opinion (see also response from Dr Ellen
Grant). Of course life-style factors like nutrition and stress also
play a role. As Dr Melvin Ramsay said in his booklet 'Myalgic
Encephalomyelitis and Postviral Fatigue States - The saga of the Royal
Free disease' (25, reflecting on his experiences as the Consultant
Physician at that Hospital during the 1955 )outbreak: "I had long
harboured a suspicion that the triggering factor of ME is to be found
in the immunological state of the patient and research is showing that
this might be the case" (p26). Dr Shepherd said in his contribution to
a recent Times article (26), what is needed amongst others is research
into the role of the immune response to infections. It stands to
reason that an impaired or dysregulated immune system cannot deal
effectively with infections, and we are all exposed to countless toxic
substances in the environment and in everyday life.

Pring (Psychiatric measures will not relieve me of a neurological
illness ) powerfully describes how : M.E. is an incapacitating,
soul-destroying illness that strips away a sufferer’s entire life.
Before I became ill, I was a newly qualified teacher, with a new
husband and home. I was beautiful, vibrant and ambitious. After a
succession of viruses I was struck down with ME/CFS and finally had to
retire at the age of 39. I relied on my doctor to do what was best for
me. However, I had no idea at the time that once labelled with the
illness I would no longer be offered further testing or treatment
other than talk therapy and other psychiatric measures.

Psychiatric measures will not relieve me of a neurological illness. “

Simpson ( Education the Key to )refutes the suggestion that patients
are pessimistic : Any pessimism exhibited by those with this illness
finds its source not in the condition itself but in the ignorance and
mendacity of those who engineer scarce funding from the MRC in order
to support the pretence that ME is a somatoform condition, or who
publish research based on flawed diagnostic criteria. In fact those
suffering the tremendous disability of severe ME are surprisingly
optimistic despite the travails of having to deal with prejudice from
the some parts of the medical profession and the media.

To use NICE as an example for promoting the use of CBT and GET is
risible and perverse, yet entirely predictable as biomedical research
was ignored.The fact that 90% percent of ME support groups opposed
NICE, the fact that ME patients took NICE to a judicial review in
protest at their guidelines for ME, the fact that the only support
that NICE could muster from those supposedly supporting the ME
community were from organisations that accept government money and who
themselves organise “psychosocial conferences” on ME – all of this
illustrates the lack of confidence which people with ME and their
families have for NICE. “

Jafry (Re: triumphalism not defeatism ) commented that Santhoue's “
article could be re-titled: Psychiatrists' insistence on CBT/GET is
undermining the progress of biomedical research.

It is no wonder some in the ME community are labelled as militants. We
are angry and exhausted and baffled at not being listened to. When
will it end? What does it take? “

As Cooper ( Defeatism and Chronic Fatigue )stressed : “Many
'unfortunate victims' have had the opportunity to experience the
'benefits of the treatments outlined by Santhouse and his colleagues'
but many of these victims are still unwell. (If you recall, some of
them are dead). “

den Broder (Defeatism leads to CBT/GET )from the Netherlands , points
out how “ ME can be treated - only not by CBT/GET. Research by NIVEL
(De Veer, 2008) shows that CBT, GET as well as antidepressants offer,
of all commonly applied treatments, by far the worst results. Even
NICE, that produced a guideline on CFS that many professionals refuse
to support (NICE, 2007), does not recommend CBT or GET for the
severely ill as the authors, in their defeat, appear to do.

Diets, supplements, bedrest, pacing and painkillers, on the other
hand, are among the treatments that are known to, sometimes
significantly, improve the ME patient's quality of life (De Veer,
2008). But that is just the beginning: they do not cure.

There is no reason why ME should not be curable. We know most of
what's wrong - in fact, we knew that already before the psychiatrists
muddied the scene (see e.g. Hyde, 1992) - so all it takes is good
research, which of course needs funding. The millions that are
currently wasted on CBT/GET would do nicely.

So many people need not have died, or lead a crippled life.

It is a human rights issue, stated Arnoldus (A human rights issue ),
also from the Netherlands : “ There is enough reason to believe that
the adoption of broad criteria for ME/CFS does stigmatize patients and
"will have crucial influences on CFS epidemiologic findings, on rates
of psychiatric co-morbidity, and ultimately on the likelihood of
finding a biological marker and identified etiology" .

There is evidence that in certain situations psychotherapy can do harm
to ME/CFS patients. We have to consider that the debate is not only
about rigorous science. At stake is the struggle for honoring
elementary human rights to ME/CFS patients (27, 28).

Finally “This editorial” said Crowhurst (Defeated ? Not this carer.
) ,”shows how it is the psychiatrists, whose “unproven beliefs and
assumptions are presented as fact” (Hooper 29) who face defeat ; how
they have nothing to offer the severely affected , except an
increasingly discredited , vapid, ideology, that has so destroyed
lives. “

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26.Doctors, school, friends thought I was faking it'. Times 2
(Health), 25.1.2010, p6+7.

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28. Morris D (2001) The lived experiences of ME/CFS: a study into
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Adelaide, Australia.

29. Hooper M (2010) Magical Medicine: How to make a disease disappear,
PRESS RELEASE: MEDICAL RESEARCH COUNCIL,
http://www.meactionuk.org.uk/magical-medicine.htm