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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. “

1.Santhouse AM, Hotopf M, David AS. Chronic Fatigue Syndrome. BMJ 2010;340:c738

2.Malouff JM, Thorsteinsson EB, Rooke SE, Bhullar N, Schutte NS.
Efficacy of cognitive behavioral therapy for chronic fatigue syndrome:
a meta-analysis. Clin Psychol Rev. 2008 Jun;28(5):736-45.

3.Report of the CFS/ME Working Group. Department of Health; January
2002. http://www.dh.gov.uk/dr_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4059506.pdf

4.Pheby D and Saffron L. Risk factors for severe ME/CFS. Biology and
Medicine 2009; 1: 50 -74.http://biolmedonline.com/Articles/vol1_4_50-
74.pdf


5.Council of approval with regards to rehabilitation contracts with
CFS reference [Akkoordraad in het kader van de
revalidatieovereenkomsten inzake ten laste neming door
Referentiecentra van patiënten lijdend aan het Chronisch
vermoeidheidssyndroom] [Dutch]. Evaluation Report (2002- 2004) with
respect to Rehabilitation Contracts between the RIZIV and the CFS
Reference Centers [Evaluation Report 2002-2004 with respect to
rehabilitation contracts between the RIZIV and the CFS Reference
Centers] [Dutch). 2006, July.

6.Action for M.E./AfME. Scotland M.E./CFS Scoping Exercise Report. 2007.

7.Bjørkum T, Wang CE, Waterloo K. [Patients' experience with treatment
of chronic fatigue syndrome] [Article in Norwegian]. Tidsskr Nor
Laegeforen. 2009 Jun 11;129(12):1214-6.

8.Kerr JR, Petty R, Burke B, Gough J, Fear D, Sinclair LI, Mattey DL,
Richards SC, Montgomery J, Baldwin DA, et al. Gene expression subtypes
in patients with chronic fatigue syndrome/myalgic encephalomyelitis. J
Infect Dis. 2008 Apr 15;197(8):1171-1184.

9.Gow JW, Hagan S, Herzyk P, Cannon C, Behan PO, Chaudhuri A. A gene
signature for post-infectious chronic fatigue syndrome. BMC Medical
Genomics 2009, 2:38. doi:10.1186/1755-8794-2-38.

10.Jason LA, Corradi K, Gress S, Williams S, Torres-Harding S (2006).
Causes of death among patients with chronic fatigue syndrome. Health
care for women international. 2006; 27 (7): 615–26.
doi:10.1080/07399330600803766.

11.Chambers D, Bagnall AM, Hempel S, Forbes C. Interventions for the
treatment, management and rehabilitation of patients with chronic
fatigue syndrome/myalgic encephalomyelitis: an updated systematic
review. J R Soc Med 2006;99:506-20.

12.Essame CS, Phelan S, Aggett P, White PD. Pilot study of a
multidisciplinary inpatient rehabilitation of severely incapacitated
patients with the chronic fatigue syndrome. J Chronic Fatigue Syndr
1998;4:51-60.

13. Myhill M, Booth NE, McLaren-Howard J. Chronic fatigue syndrome and
mitochondrial dysfunction. Int J Clin Exp Med 2009;2:1-16.


14. Morch K, Hanevik K, Rortveit G, Wensaas KA, Eide GE, Hausken T,
Langeland N. Severity of Giardia infection associated with
post-infectious fatigue and abdominal symptoms two years after. BMC
Infect Dis. ;9(1):206. [Epub ahead of print]

15. Jason LA et al. Chronic Fatigue Syndrome: The Need for Subtypes.
Neuropsychology Review 2005; 15(1): 29-58

16. Price JR, Mitchell E, Tidy E, Hunot V. Cognitive behaviour therapy
for chronic fatigue syndrome in adults. Cochrane Database Syst Rev.
2008 Jul 16; (3): CD001027.

17. Malouff JM, Thorsteinsson EB, Rooke SE, Bhullar N, Schutte NS.
Clin Psychol Rev 2008; 28(5): 736-45.

18. Chronic fatigue syndrome. Report of the joint working group of the
royal colleges of physicians, psychiatrists and general practitioners.
London: RCP, 1996. (CR 54.)

19. CFS/ME Working Group. Report to the Chief Medical Officer of an
independ­ent working group. London: Department of Health, 2002.

20. CFS/ME Research Strategy. MRC CFS/ME Research Advisory Group (RAG)
report 2003.

21. National Institute for Health and Clinical Excellence. NICE
clinical guideline 53: Chronic fatigue syndrome/myalgic
encephalomyelitis (or encephalopathy). 2007.

22.Hyde BM et al (Editors). The Clinical and Scientific Basis of
ME/CFS. The Nightingale Research Foundation, Ottawa, Canada, 1992.
Chapters 4 (p29); 12 (p115), 43 (p392), 73 generally.

23, Leeming J. Risks and Benefits. Nursing Standard, 17.5.1995, Vol.9;34:22-23.

24. Pollock TM et al. Seven Year Survey of disorders attributed to
vaccination in North West Thames Region. Lancet 1983;i:753-57.

25.Ramsay AM. Myalgic Encephalomyelitis and Postviral Fatigue States -
The saga of Royal Free disease. Gower Medical Publishing, London, 1988
(p26).

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

27. Mitchell R, and Mitchell V (2006). CBT, GET And Human Rights, From
the IiME Response to the NICE Draft Guidelines, Invest in ME.

28. Morris D (2001) The lived experiences of ME/CFS: a study into
human rights and equity in tertiary education, ME/CFS society,
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

Moments of torture




...this is a drawing Linda made last night, of the pain and torment her body is in.

How do I describe
the lonliness
of this illness
the never-ending
barrier
that separates me
from everything
absolutely nothing
is experienced
or received
normally
no touch feels right
no voice is guaranteed
to be heard accurately
no action is definitely possible
in any one moment
How can I live with this
torment of wrong sensation
and misinformation ?
Everyday it gets harder

Defeated ? Not this Carer.

Defeated ? Not this carer.
(Response to
Alastair M Santhouse, Matthew Hotopf, and Anthony S David
Chronic fatigue syndrome
BMJ 2010; 340: c738 http://www.bmj.com/cgi/eletters/340/feb11_1/c738)



I have spent the last sixteen years caring full time for my wife who has very severe ME. The greatest challenge those of us who seek treatment for their loved ones face, is the ongoing struggle to get ME removed from its association with generalized fatigue states.

Far from feeling “defeated”, however, there is a real sense that at last the tide is beginning to turn our way ; that the world is finally waking up to the true horror that is ME.

Those of us who have fought so long for biomedical recognition are buoyantly optimistic. This editorial shows how it is the psychiatrists, whose “unproven beliefs and assumptions are presented as fact” (Hooper 2010) who face defeat ; how they have nothing to offer the severely affected , except an increasingly discredited , vapid, ideology, that has so destroyed lives.

Have Santhouse et al any idea what a struggle everyday life is like for the severe ME sufferer ? My wife describes how : "Having severe ME is unimaginable ; the experience is so different , intense and unremitting than anything I have ever experienced before. I am never unaware of the range of symptoms that rage through my body , and are dominated by intense never ending pain in every millimetre of my skin and muscles, over and throughout my whole body; head shoulders, back, front , arms legs, hands , feet, toes , fingers, eye lids , scalp the soles of my feet, the tip of my nose , my eyebrows even. They all burn, throb, tingle, itch, and hurt in ways indescribably unbearable , along with other unusual sensations"

As Dowsett (2006) points out , : “ME/CFS affects more Americans than AIDS, lung cancer and breast cancer combined, more people than have multiple sclerosis or cystic fibrosis, and costs the U.S. more than $9.1 billion annually in lost productivity. More importantly, nearly 90% of patients have not been properly diagnosed. Recovery rate is poor, estimated between 5% and 10% of patients attaining total remission. Patients can be as functionally impaired as those suffering from diabetes, heart failure and kidney disease, and are often as severely disabled as those with heart failure, late-stage AIDS, MS, patients undergoing chemotherapy, and COPD (chronic obstructive pulmonary disease). “

Given the level of concern raised not just by patients but professionals, listed by Williams (2009) , about NICE’s irrelevance to neurological ME , Santhouse et al’s recommendation of CBT and GET for the severely affected is breathtaking:

Association of British Neurologists: “it almost seems that a select group of psychiatrists with a polarised view of this complex condition is directing the development of the guideline from ‘behind the scene’ ”

Association for Psychoanalytic Psychotherapy in the NHS :“It is highly misleading to state that CBT is the therapy of first choice, since the only relative efficacy RCT quoted in the Guideline shows that counselling has better outcomes than CBT.”

British Association for Counselling and Psychotherapy (BACP): “responses to the Action for ME Membership Survey rate CBT and GET as the least helpful of a range of interventions...”

British Dietetic Association: “It is unhelpful to simply state that ‘Exclusion diets are not generally recommended for the management of CFS/ME’ when irritable bowel symptomatology is quite common in this illness.”

Chartered Society of Physiotherapy: “If 50% get worse with GET, why suggest it as first line of treatment?” College of Occupational Therapists: “The College has serious reservations about the suitability of this Guideline.”

ME Research UK: (Commenting on “…CBT is an evidence-based treatment for CFS/ME…). It is not. The evidence base consists of only five trials which have a validity score of less than 10.”

National CFS/ME Observatory: “The belief that evidence-based guidelines can be constructed on such an inadequate evidence base is, in our opinion, misguided.”

National Coordinating Centre for Health Technology Assessment: “NICE largely pays lip service to the principle of consensus, with patient evidence being viewed as biased and virtually ignored”.

NHS Plus: “the advice given to maintain exercise even when there is an increase in symptoms is potentially harmful and dangerous, and the supposed negative effects of deconditioning would be negligible in comparison”

Royal College of Paediatrics and Child Health: “There is a danger in relying solely on information from systematic reviews of clinical and randomised trial reports for non-pharmaceutical treatments that are not easily defined or replicated, such as CBT and GET.”

Royal College of Physicians of London: “We think that this is a potentially dangerous statement (ie.) that with increases in CFS/ME symptoms, exercise or physical activity should be maintained to avoid the negative effects of deconditioning. We are not aware of any clinician who would make this recommendation, except in a very mildly affected patient.”

Sheffield South West Primary Care Trust: “The narrow focus of the NICE Guideline may lead to helpful approaches being undermined and patient preference / clinical judgment being undervalued. All clinicians do not subscribe to the ‘CBT model of CFS/ME’, and (it) does not seem to be well received by many ME Support Groups either”.

(Source Williams 2009)

Significantly, NICE (NICE “2007)does not recommend CBT and GET for people with Severe ME, who are excluded from Criterion 7 of its August 2007 Audit Criteria ; those ME patients “provided with cognitive behavioural therapy and/or graded exercise therapy as a treatment approach.”

My wife has not known one single moment free of throbbing, screaming pain, a host of neurological symptoms and intense, unfathomable suffering, in the last 16 years.

Santhouse el al’s article will only contribute to the abuse, neglect and disbelief that ME sufferers and Carers have to deal with.

One day though, the depth of the ME medical scandal will be revealed, especially with 5000 published medical papers and recent cutting -edge research into the XMRV retro-virus, dispelling once and for all the myth that ME is a psychiatric condition.

Defeated ? Not this carer .

References :

Dowsett B (2006) ME/CFS Epidemiology & Epidemics www.name- us.org/ResearchPages/ResEpidemic.htm

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

NICE (2007) Audit criteria Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy)

http://www.nice.org.uk/nicemedia/pdf/CG53AuditCriteria.doc.

Williams M (2008) A NICE Dilemma http://www.meactionuk.org.uk/A_NICE_DILEMMA.

Margaret Williams 2009 : Examples of concerns raised by professional bodies about the NICE (draft) Guideline CG53 on “CFS/ME" http://meagenda.wordpress.com/2009/03/13/examples-of-concerns-raised-by- professional-bodies-about-the-nice-draft-guideline-cg53-on- %E2%80%9Ccfsme%E2%80%9D/

Competing interests: None declared

Stonebird

"The Stonebird represents the idea that you don't have to do anything to be of beauty and value in the world. Even if you cannot move, even if you cannot communicate, even if you cannot think, still you are precious and your presence matters."
Linda Crowhurst

I am coming to the end of a Web Design Course. As my final Assignment I am working, right now, upon building a website that will do everything it can to be ME friendly - one that takes into account the need for clean, simple layout, gentle colours and crystal clear information. This website will be called : "Stonebird" and I have just renamed this Blog , in preparation.

Stonebird will try to convey the lived experience of very severe ME, within a marriage.

Like the day before yesterday. As if a curtain had been pulled back, Linda sat before me in her wheelchair and I could see right into the horror of her illness. She is very, very ill. A glimpse like that burns your very soul and there is nothing you can do.

A Dangerous Path : response to Santhouse et al 2010 .

Link(s) to full text of BMJ editorial "Chronic fatigue syndrome" (Santhouse
et al, 2010) (sub-heading: "Defeatism among clinicians is undermining
evidence that it can be treated")

http://tinyurl.com/yb3343w i.e.
http://www.meassociation.org.uk/index.php?option=com_content&view=article&id
=1195:in-the-bmj-today-11-feb-2010-defeatism-is-undermining-evidence-that-ch
ronic-fatigue-syndrome-can-be-treated-&catid=30:news&Itemid=161


A Dangerous Path
Linda Crowhurst

Some of the points made in the Editorial are indeed correct, for example “the alternative to treatment is no treatment and this can have a disastrous effect on the patient, who may feel the medical profession has given up on them as a hopeless case.” There is indeed currently no effective treatment, no cure and little hope for people who are genuinely suffering from very severe ME, like I have done for the past 16 years.


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.


This is a very dangerous path to take , one which has led to a negation of the severity of illness and of the real physical suffering, that people endure. It has led to the most severely affected housebound and bed-bound people being left for decades , like myself, without appropriate physical investigation and biomedical ME support . It has also led to the shocking reality that the only front-line treatment currently being promoted, entirely wrongly, by the NHS, is psychosocial, completely ignoring the underlying physical dysfunction.


The severely affected are not even involved in research so how can their needs be known ? How can this article promote CBT and GET for very severely affected patients , when the psychiatric view is a complete denial of their very real , totally disabling physical experience ? This article will lead to further confusion in the medical profession , will potentially endanger people's lives and lead to untold suffering if followed.


Most people with very severe ME would find it too difficult to even be in a room with other people, due to acute hypersensitivity and a multiplicity of severe physical symptoms, let alone engage in therapy of any description, physical or mental. Yet this issue is not even raised in the article.


Reading this paper you might be convinced that ME is a psychiatric disorder . In reality ME is a neurological disease with physical multi-system dysfunction; a fact that is frighteningly downplayed and denied by the psychiatric lobby.


What is omitted from this article is a warning of the very real dangers of imposing CBT and GET on very frail, vulnerable, ill people for whom exercise is contra-indicated and who suffer such devastating levels of cognitive dysfunction, as a result of their disease, that CBT becomes equally as dangerous as physical exercise. Mental exertion can have an equally disastrous impact upon the body , leading to an increase in already severe symptoms and a deterioration that can be permanent and may lead to death.


Patients with severe ME do not want CBT and GET. What they want is biomedical research, significant biomedical testing and new tests and treatments available on the NHS. What they need is the psychiatric interpretation and powerful influence out of ME altogether. It is long overdue.


A Carer's Response to "Magical Medicine" by Hooper and Williams

They say that narrative is everything; it's how well you tell your story that counts today. That must be true for the psychiatric lobby have got where they have , not on the basis of sound science or reasoning, but upon a fantasy that suits the Insurance companies , a fairy tale, a made-up story, a prejudice-fuelled myth that has destroyed so many lives.

It's all hot air and illusion.

Malcom Hooper's and Margaret William's masterpiece forensically, in excruiciating detail strips bare the psychiatrist's flimsy clothing and exposes them as the lunatic, madly dangerous fanatics that they are; comparable to the Nazis. How incredible that CoCure has published this - for they have explicitly told me, in the past, they do not publish any material linking the psychiatric lobby to the Nazi party.

Well, how else can you draw the stark comparisions ? After all it was the Nazis who first coined the term : "the undeserving sick", so beloved by the insane psychiatric lobby.

Wll anyone in their right mind, wish to belong to Action for ME after reading this document ? Not likely - but at over 400 pages that's a tall order for ME patients.

Could anyone with a modicum of sense not be able to see through the utter nonsense that is the PACE and FINE trials , after reading just the first page of this unrelentingly tough paper? You would think so, but as a Registered Nurse I despair at how my colleagues seem to have lost all reason when it comes to ME. So taken-over , so stuck.

Will it come to anything ?

..up against a multi-billion dollar industry, up against almost total domination of the media, up against New Labour ? Of course it will be rubbished.

What do you think ?

Yes, it will ! That's what I think. Because we ARE winning, the tide has more than turned XMRV and Lynn Gilderdale's death has opened eyes across the world to the reality and suffering of ME.

Hell , yes, because I am going to use it , this is gold dust, this is heaven sent, this is a weapon to wield like a sword in my ongoing battle; it's individual action that counts most of all.

Yes, because it is the TRUTH, told in this extraordinary document as never before ; there is nothing more powerful :

"I believe that unarmed truth and unconditional love will have the final word in reality. This is why right, temporarily defeated, is stronger than evil triumphant." (Martin Luther King)



www.meactionuk.org.uk/Magical-Medicine.htm

World Day of the Sick 2010

I have discovered an anger, a hurt, that lies in silence.

Yesterday I went to Church, to fetch the Eucharist for my wife. Yesterday the whole
Church prays for the sick. But no mention of my wife. We prayed for our Bishop.

And no one really knows me.

So , much later, Linda begged God to "please take away the pain, for I cannot bear it".

Me holding her, as best I can.

Her and me and God.

This is the Church.

There is nothing between us

There is a thick wall of nothing
round my head
blanking out thought
and connection
I feel seperate
even though you are in the room
with me
I cannot focus my sight
I cannot focus my thought
I cannot find words or images
in my mind
There is a sea of blankness
where vivid imagination
and vibrant colour
should be
I cannot truly explain
why I feel this way
It feels physically tangible
this desolate empty wall
of invisible horribleness
that lies between me
and the outside world
and you who I love
most dearly of all.

Linda Crowhurst

09.02.10

20 Facts about being a Carer for someone with severe ME.

20 Facts about being a Carer for someone with severe ME.

Greg and Linda Crowhurst 9th Feb 2010

(permission to repost)


1 The relationship between you and the person with severe ME, must
be be a priority in your life. You may be caring for decades, as there
is currently no treatment, no cure and limited validation.

2 You need to understand the illness , what it is and how it affects the pe=
rson.

3 This is going to take time; it will not happen overnight. Tt may
take years, even to identify the symptoms and understand their impact.

4 It is going to be painful, as you try and understand the complexity
of severe ME and its bizarre nature ; in relation to you as a
carer, trying to help the person and the impact it has upon your
lives.

5 The person with severe ME is not living in the same experience of
the world as you are; this is so hard to understand and to deal with.

6 You are most likely going to have to work this out alone.

7 Until you understand it, can cope with it, know how to deal with
it,know how to maintain your relationship, despite difficult
interactions, you will not be able to convey the severity and effect
of severe ME to family, friends, professionals.

8 You are going to experience isolation from normal things because the
person with severe ME cannot do normal things.If you stand by their
side, your life wil become more limited too.

9 You are going to enter into some of the aspects of the person's
experience; the disbelief, the disappointment, the negativity, the
misunderstanding, the misinterpretation, the rejection.

10 You are going to have to become aware politically of what is going
on, in order to survive.

11 You are going to have to fight your corner and the person's corner,
even to get basic needs met.

12 You will have to become an advocate for yourself and the other
personbecause it is a poorly understood illness, often treated as a
psychiatric illness rather than a true neurological, multisystem,
dysfunctional disease.

13 You really cannot assume that you are going to get the
understanding, the acceptance, the medical and social support from
family and friends that you would expect and should be entitled to
and would get with any other illness.

14 If you are going to be the main carer for the person with severe
ME, you have to make the choice between work and poverty and quality
of life and your relationship with the person.

15 These are big decisions that have a huge impact upon the person
and they result in losses that need grieving and understanding. Most
importantly they need accepting.

16 You need to accept the choices you make and look for the benefits
you gain in loving and caring for that person.

17 The person with severe ME is not going to fit into standard
procedures and practices, do not expect that it is going to be easy
and expect that formal agencies are going to reach out and
comprehend.

18 There is a tendency, on behalf of professionals and well meaning
others to be quite divisive and to client-ise patients and
carers, rather than offer a holistic approach and understanding to
what their need is.

19 Do not give your power away to social workers, nurses, doctors,
anybody. You work, live with the person, you do know better and trust
has to be earned.

20 You will become greater than you ever thought possible, because you
really do have to reflect upon what is important to you in your life
and how to be empowered.