Monday, February 15, 2010

13 Rapid Responses including "Why do doctors refuse to believe patients?"

Subject: 13 Rapid Responses in reply to the BMJ editorial, "Chronic Fatigue
Syndrome" (replies posted 11-13th February, 2010)

Rapid Responses to:

Alastair M Santhouse, Matthew Hotopf, and Anthony S David
Chronic fatigue syndrome
BMJ 2010; 340: c738 [Full text]

Rapid Responses published:

Why do doctors refuse to believe patients?
Ellen Goudsmit   (11 February 2010)

Press ahead with funding bio-medical research into M.E./CFS
Sir Peter Spencer   (11 February 2010)

Welcomed common sense and clarity
Matthew R Broome   (11 February 2010)

Biomedical Research not Wastepaper basket diagnoses
jill cooper   (12 February 2010)

Do CBT and GET really work for Chronic Fatigue Syndrome?
Tom Kindlon   (12 February 2010)

Re: Why do doctors refuse to believe patients?
Ellen Goudsmit   (12 February 2010)

Defeatism and Chronic Fatigue
Alastair C Young   (12 February 2010)

More light needed
Neil H Riley   (12 February 2010)

Severely affected - severely neglected
Dr Charles B Shepherd   (13 February 2010)

CBT/GET is ineffective and potentially harmful. ME/CFS patients seem to die
considerably younger.
Frank N.M. Twisk   (13 February 2010)

There's none so blind as those who will not see
Louise E Ellis   (13 February 2010)

Using the correct tool for the right job
Kelly Latta   (13 February 2010)

No room for complacency
Derek FH Pheby   (13 February 2010)


Why do doctors refuse to believe patients?

11 February 2010

Ellen Goudsmit,
Visiting Research Fellow, UEL
London TW11 9QX

As a patient with a progressive form of myalgic encephalomyelitis (ME), a
psychologist who trained in Clinical as well as Health Psychology and a
specialist in ME and chronic fatigue syndrome (CFS), I consider that I may
have a useful contribution to make in the debate about the needs of people
with fatigue syndromes and the treatments mentioned by Santhouse et al. I am
in the unhappy position of being familiar with both sides of the couch, as
it were. For the record, I differentiate between ME and CFS because the
assumption of equivalence has not been tested and I don't recognise myself
in many descriptions of CFS.

As Sandhouse et al suggested, people with ME and CFS need better access to
specialist clinics. As things stand, too many patients are left to cope on
their own and even the most sympathetic GP is limited in what he or she can
offer, courtesy of NICE.

What patients, groups and professionals like myself have been arguing for
years is that CBT and the other approaches noted by Sandhouse et al are
neither appropriate nor particularly helpful for everyone with fatigue
syndromes. However, the article illustrates that we're simply not believed.

As a psychologist, I recognise that CBT and GET can alleviate fatigue and
that many patients feel better, if only for a few months. However, I submit
that too many commentators have overlooked the methodological flaws in the
various trials and that they have overstated the results. For example, a
recent review supports an earlier meta-analysis that effect sizes tend to be
modest (1). Moreover, there are doubts about the value of the different
elements within the interventions, e.g. CBT may help simply because it
provides support and an opportunity to vent our frustration (2). Similarly,
research using objective measures have shown that improvements following CBT
can not be attributed to increases in activity (
3). So why continue to
include it and risk a relapse?

There are also other arguments that we need more flexible and individualized
programmes. For instance, there is no evidence as yet that CBT and/or GET
help those of us with neurological symptoms like muscle weakness, vertigo
and visual disturbances. As for the tendency for some of us to develop
multiple sensitivities to chemicals and foods, it's disabling and extremely
depressing but often psychologised, trivialised and ignored.

There is now enough evidence for therapeutic options which are as effective
as CBT and GET, but more acceptable (4,5). However, NICE misclassified them
under the wrong headings so didn't realise that there were alternatives and
those of us who alerted them to the problem were dismissed.

In terms of my own experience, I know that things can get worse. Some of my
friends are more disabled than me; they too have tried all the therapies
offered by their consultants, but these have not halted the progession of
their disease and some are now barely able to eat a normal diet. We're all
living on hope and it's hard.

Articles like those by Sandhouse et al reinforce the impression that editors
and researchers are keen to lump everyone with fatigue together because it's
neat and tidy. We're human, we dislike complexity and we prefer simple
solutions. CBT and GET seem to solve a lot of problems but they rely on the
asssumption that any differences within the CFS population are of no
clinical significance. They depend on the concept of CFS as an entity with
no ongoing pathology such as infection. They are perpetuated by discussions
which dismiss evidence to the contrary. And above all, they need decision
makers to question the knowledge and credibility of the patient. Even those
who are Fellows of the BPS (British Psychological Society).

What I don't see is an impartial, evidence-based approach. I see a textbook
example of group-think, where dissident voices are unwelcome
and relegated
to the letters page. 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.

1. Godfrey E, Chalder T, Ridsdale L, Seed P, Ogden J. Investigating the
'active ingredients' of cognitive behaviour therapy and counselling for
patients with chronic fatigue in primary care: Developing a new process
measure to assess treatment fidelity and predict outcome. Br J Clin Psychol

2. Price JR, Mitchell E, Tidy E, Hunot V. Cognitive behaviour therapy for
chronic fatigue syndrome in adults. Cochrane Database of Systematic Reviews
2008; Issue 2. Art No.: CD001027. DOI: 10.1002/14651858.CD001027.pub2.

3. Wiborg JF, Knoop H, Stulemeijer, M, Prins JB, Bleijenberg, G. How does
cognitive behaviour therapy reduce fatigue in patients with chronic fatigue
syndrome? The role of physical activity. Psychol Med, 2010 Jan 5:1-7. [Epub
ahead of print]

4. Jason LA, Torres-Harding S, Friedberg F, Corradi K, Njoku MG, et al.
Non-pharmacologic interventions for CFS: A randomized trial. J Clin Psych
Med Settings 2007;14:275-96.

5. Goudsmit EM, Ho-Yen, DO, Dancey, CP. Learning to cope with chronic
illness. Efficacy of a multi-component treatment for people with chronic
fatigue syndrome. Patient Educ Counseling, 2009; 77:231-6.

Competing interests: None declared


Press ahead with funding bio-medical research into M.E./CFS

11 February 2010

Sir Peter Spencer,
Chief Executive
Action for M.E., 3rd Florr Canningford House, Victoria Street, Bristol, BS1

The authors are correct when they say that doctors are often uncertain
about what they are dealing with when it comes to M.E., This is why we need
the highest priority to be given to scientific research
into M.E./CFS to
discover the fundamental biology of this devastating chronic condition. Is
it any wonder that those who suffer so badly and yet see so little research
feel such despair?

People deserve better, they deserve answers and ultimately either a cure or
failing that far better treatments than are currently available. The authors
say that severe presentations of M.E./CFS are unusual but there are up to
60,000 severely affected people in the UK. Many of these have fallen off the
radar and given up on the NHS because they feel it has little to offer.

We urge the Medical Research Council and the National Institute for Health
Research to press ahead with funding bio-medical research into M.E./CFS now
and urge all doctors to show more professional objectivity and sensitivity
to their M.E. patients in the meantime

Sir Peter Spencer
Chief Executive
Action for M.E.

Competing interests: None declared


Welcomed common sense and clarity

11 February 2010

Matthew R Broome,
Associate Clinical Professor of Psychiatry
University of Warwick

I was delighted to see the excellent editorial by Santhouse et al. As a
clinician, I felt a great deal of unease with the media coverage of the
Gilderdale case and the strange conflation of chronic fatugue syndrome with
a terminal illness and hence the link with the assisted dying/euthanasia

As Santhouse and colleagues point out, chronic fatigue syndrome is typically
not a terminal illness, with no excess mortality, and in addition to
suicide, I imagine risk to life would be consequent upon profound immobility
and factors such as bed sores, chest infection and malnourishment, all of
which are avoidable. There are successful treatments available and several
specialist units in the country for those with severe forms of the illness.
However, such treatment typically involves the involvement of a
psychiatrist, clinical psychologist and importantly, a physiotherapist and
occupational therapist. But therapeutic gains can certainly be made and the
pessimism towards the condition displayed by the media should be avoided by
health professionals, particularly as the risk is that such pessimism, as
this case demonstrates, may be transmitted to families.

Competing interests: None declared


Biomedical Research not Wastepaper basket diagnoses

12 February 2010

jill cooper,
Non-militant ME campaigner who does not have ME
Teacher cv214hl

Patients and their families are 'fatigued' with the medical profession's
sloppy attitude towards diseases which the medical profession call
'syndromes'. Instead of admitting that these conditions are, as yet, not
understood, the medical profession have invented hypotheses about mind/body
manifestations which can only be treated by correction of thinking on the
part of the patient.

Cognitive Behavioural Therapy is promoted to 'help patients manage their
symptoms' and to cure 'abnormal illness beliefs'. Graded Exercise Therapy is
aimed at reversing 'de- conditioning'.

The best help a medic can give a patient is to respect that patient's
intellect and admit that not everything is understood about the human body.

Instead, we seem to have a group of very powerful psychiatrists who adopted
the Royal Free Disease in the late 60s, ignored all the evidence of physical
symptoms, and have presented it ever since as a form of hysteria.

As a result, we have patients who are severely physically ill who are
choosing suicide rather than to further endure the cruelty doled out to them
by the medical profession and the rest of society.

I do not include all medical professionals in the above accusation but I do
include many of them.

I urge all medical professionals to look at the already existing evidence
which shows immune, endocrine and neurological abnormalities.

I urge you to support the MRC initiative, led by Professor Stephen Holgate,
to do biomedical research to establish the underlying causes of this range
of 'syndromes' so that these patients can receive suitable care.

Competing interests: None declared


Do CBT and GET really work for Chronic Fatigue Syndrome?

12 February 2010

Tom Kindlon,
Information Officer (voluntary position)
Irish ME/CFS Association

Santhouse and colleagues 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)(1). 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).

A recent review of three Dutch CBT studies found that while patients'
fatigue did improve, their activity levels did not and remained low, calling
into question claims that CBT is an effective rehabilitative strategy(3).

Systematic reviews tend to ignore "real world" data
. An audit of 5 Belgian
rehabilitation clinics, where the treatments offered were CBT and GET, found
that while improvements were recorded in various subjective outcome
measures, there was negligible change in the results from the exercise test
and the average number of hours in paid employment decreased at the end and
at follow-up(4). This was unlikely to be due to under- treatment, as an
average of 41 sessions were undertaken.

Given all this data, and the high rates of adverse reactions from GET that
have reported in surveys(5), patients and their clinicians are entitled to
hope that in the future a greater range of interventions will be available.

Tom Kindlon


1. Santhouse AM, Hotopf M, David AS. Chronic Fatigue Syndrome. BMJ

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. Wiborg JF, Knoop H, Stulemeijer, M, Prins JB, Bleijenberg, G. How does
cognitive behaviour therapy reduce fatigue in patients with chronic fatigue
syndrome? The role of physical activity. Psychol Med, 2010 Jan 5:1 -7. [Epub
ahead of print]

4. Rapport d'évaluation (2002–2004) portant sur l'exécution des conventions
de rééducation entre le Comité de l'assurance soins de santé (INAMI) et les
Centres de référence pour le Syndrome de fatigue chronique (SFC) (2006)
information/studies/study-sfc-cvs/pdf/rapport.pdf (Date last accessed: 11
February 2010).

5. Kindlon T, Goudsmit EM. Graded exercise for Chronic Fatigue Syndrome: Too
soon to dismiss reports of adverse reactions. J Rehabil Med. 2010

Competing interests: None declared


Re: Why do doctors refuse to believe patients? 12 February 2010

Ellen Goudsmit,
Registered Psychologist (Health)
London TW11 9QX

Re my post 11th February 2010.

I'd like to apologise to Dr. Santhouse for misspelling his name after the
first citation, which was correct. I also wish to note that reference 1 in
the text relates to reference 2 in the list.

Ellen Goudsmit PhD C.Psychol. FBPsS

Competing interests: None declared


Defeatism and Chronic Fatigue 12 February 2010

Alastair C Young,
Bolton BL1 4QR

Santhouse and colleagues comment on the defeatism of clinicians with regard
to the chronic fatigue syndrome.Much of the blame for this reaction is the
bullying and badgering from a pwerful lobby,predominantly lay but partly
medical, which will not accept any role for psychological factors in the
cause of this disorder.

If there is a physical cause then there is certainly no standard medical
treatment available at present.To encourage the unfortunate victims to
pursue the purely physical approach is to deny them the benefits of the
treatments outlined by Santhouse and his colleagues.

Competing interests: None declared


More light needed 12 February 2010

Neil H Riley,
Chairman of The ME Association
7, Apollo Office Court, Gawcott, Buckingham MK184DF
Send response to journal:
Re: More light needed

As both a patient with ME/CFS and the Chairman of a National Charity whose
purpose is to inform, fund research and support those with the illness I
have found little defeatism amongst the medical professionals I have met.
There are those who are perplexed; those who accept the chronicity; those
who believe they know a treatment that will help.

What is missing in this debate is the need to examine more closely the huge
range of patients lumped together under the CFS/ME diagnosis. I have
attended many support groups for this illness and the variety of
presentations of symptoms is wide. Some clearly need active psychiatric
help; others counselling; some are in recovery. But there is a core of
chronically unwell members who are not depressed, whose illness began with a
severe viral infection and who have not recovered. Despite the NICE
Guideline recommended treatments of CBT and GET, those patients remain ill
and we simply do not know why.

Until money is spent and researchers encouraged to look more closely at that
group then this illness will continue to generate much heat but painfully
little light. I and many thousands of others like me have an illness that
limits our lives hugely but we do not have an air of defeatism. We have the
intelligence, the drive and the belief that medical science will eventually
find out why we are so ill.

Neil Riley

Chairman of the ME Association Buckingham. MK18 4DF

Competing interests: None declared


Severely affected - severely neglected 13 February 2010

Dr Charles B Shepherd,
Hon Medical Adviser
The ME Association, 7 Apollo Office Court, Radclive Road, Gawcott, Bucks
MK18 4DF

Santhouse et al (1) are correct to say that therapeutic defeatism is not
the answer to ME/CFS and that suicidal intentions must always be taken
seriously. However, they make a number of conclusions and observations that
are over-simplistic, premature or inaccurate.

First, the media have, quite rightly, used the tragic case of Lynn
Gilderdale to highlight the fact that severe ME/CFS exists and that there is
a desperate need for biomedical research into the underlying cause. But the
media coverage did not imply that ME/CFS is a 'commonly fatal' condition,
and it was premature of the authors to then go on and conclude - without the
benefit of robust epidemiological data - that mortality is not increased.

Second, a considerable amount of accumuating patient evidence (2) 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 (3) has
concluded that there is no evidence to implicate personality or neurotic
traits. It is therefore disingenuous to claim that the use of these two
behaviour-based therapies, in a group of patients who cannot normally travel
to hospital to access them, is going to produce a 'dramatic recovery'.

Third, having dealt with the families of a number of people with ME/CFS who
have committed suicide in recent years, the reasons for doing so are often
related to a combination of factors which predominently involve lack of
medical care and social support, failure to control key symptoms, and
inadequate financial help.. While depression may be a factor in some cases
it is not always present.

People with severe ME/CFS require multidisciplinary services in both a
domiciliary and accesible hospital based setting that matches their complex
individual needs. Having strongly criticised the current lack of care that
is available, we question whether the NHS trusts the authors work for are in
fact putting words into action and supplying domiciliary and in patient
facilities for their severely affected ME/CFS patients.


1 Santhouse AM, Hotopf M, David AJ. Chronic fatigue syndrome. BMJ 2010; 340:
738 (13 February)

2 Report of the CFS/ME Working Group. Department of Health; January 2002.

3 Pheby D and Saffron L. Risk factors for severe ME/CFS. Biology and
Medicine 2009; 1: 50 -74. 74.pdf

Competing interests: Medical Adviser to an ME/CFS patient support and
research funding charity. Member of MRC Expert Group on ME/CFS research.

CBT/GET is ineffective and potentially harmful. ME/CFS patients seem to die
considerably younger. 13 February 2010


Frank N.M. Twisk,
Patient and literature researcher
Limmen, the Netherlands

As has been established by the Bagnall et al. (1) and the Price et al. (2),
the solution proposed by Santhouse (3) cognitive behavioural therapy
(CBT)/graded exercise therapy (GET) reduced "fatigue severity" in 40% of
chronic fatigued people, in contrast with 26% in usual care.

Taking into consideration the placebo effect, the fact that a reduction in
"fatigue" is not reflected by objective improvement (4, 5), the fact that
the evidence base for CBT and GET is almost non-existent, etc. one must
conclude that CBT and GET is not effective.

Moreover, as established by large patient surveys, e.g. (6, 7), and by
clinical practice (5), 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).

All in all, CBT/GET is a non-evidenced based therapy and even potentially
harmful for many ME/CFS patients (10).

Santhouse also asserts incorrectly 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 (11) 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.

The pathological abnormalities established in ME/CFS repeatedly plausibly
explain an increased risk for cancer (12)and heart failure (13).

Certainly it is warranted to treat depression in ME/CFS.

However, succesfully treating depression, e.g. by antidepressants, has no
effect on characteristic physical and cognitive ME/CVS symptoms (14, 15,

In conclusion, the comments made by Santhouse do not seem to be very

Ironically, the CBT/GET mantra by Santhouse and colleagues and denial of
serious biological aberrations is exactly the reason why many patients feel
that 'the medical profession has given up to them'.

It is about time the medical profession takes this devastating illness
seriously by exploring the biological abnormalities in depth and developing
effective therapies aimed at these aberrations.

So the death of Lynn Gilderdale and many others will not be in vain.

  1. Bagnall A, Hempel S, Chambers D, Orton V, Forbes C. The Treatment and
Management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis in Adults
and Children. Centre for Reviews and Dissemination (CRD), University of
York. 2007; CRD Report 35:161.

2. Price JR, Mitchell E, Tidy E, Hunot V. Cognitive behaviour therapy for
chronic fatigue syndrome in adults. Cochrane Database Syst Rev. 2008 Jul

3. Santhouse AM, Hotopf M, David AS. Chronic fatigue syndrome. BMJ. 11
February 2010. doi:10.1136/bmj.c738.

4. Wiborg JF, Knoop H, Stulemeijer M, Prins JB, Bleijenberg G. How does
cognitive behaviour therapy reduce fatigue in patients with chronic fatigue
syndrome? The role of physical activity. Psychol Med. 2010 Jan 5:1 -7.

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. Twisk FNM, Maes M. A review on cognitive behavorial therapy (CBT) and
graded exercise therapy (GET) in myalgic encephalomyelitis (ME)/chronic
fatigue syndrome (CFS): CBT/GET is not only ineffective and not
evidence-based, but also potentially harmful for many patients with ME/CFS.
Neuro Endocrinol Lett. 2009 Aug 26;30(3):284-299.

11. 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.

12. Meeus M, Mistiaen W, Lambrecht L, Nijs J. Immunological similarities
between cancer and chronic fatigue syndrome: the common link to fatigue?
Anticancer Res. 2009 Nov;29(11):4717-26.

13. Maes M, Twisk FNM. Why myalgic encephalomyelitis/chronic fatigue
syndrome (ME/CFS) may kill you: disorders in the inflammatory and oxidative
and nitrosative stress (IO&NS) pathways may explain cardiovascular disorders
in ME/CFS. Neuro Endocrinol Lett. 2009;30(6):677- 93.

14. Vercoulen JH, Swanink CM, Zitman FG, Vreden SG, Hoofs MP, Fennis JF,
Galama JM, van der Meer JW, Bleijenberg G. Randomised, double-blind,
placebo-controlled study of fluoxetine in chronic fatigue syndrome. Lancet.
1996 Mar 30;347(9005):858-61.

15. White PD, Cleary KJ. An open study of the efficacy and adverse effects
of moclobemide in patients with the chronic fatigue syndrome. Int Clin
Psychopharmacol. 1997 Jan;12(1):47-52.

16. Wearden AJ, Morriss RK, Mullis R, Strickland PL, Pearson DJ, Appleby L,
Campbell IT, Morris JA. Randomised, double-blind, placebo- controlled
treatment trial of fluoxetine and graded exercise for chronic fatigue
syndrome. Br J Psychiatry. 1998 Jun;172:485-90.

Competing interests: None declared


There's none so blind as those who will not see 13 February 2010

Louise E Ellis,
Chair of the Manchester M.E. Society
M24 1JX

When is the medical profession in the UK going to wake up to the fact that CBT and GET are not effective treatments for M.E? They may be effective for some patients whose fatigue is of a psychiatric origin. However, as patient surveys repeatedly show, CBT and GET are either of no use or result in worsening symptoms for the majority of M.E. patients.

M.S. was proven not to be 'hysterical paralysis'. How long do we have to wait before the medical profession admits that M.E. is not a treatable
psychosocial illness?

What M.E. patients would like to see is biological research into the
condition. Repetition of the erroneous claim that CBT and GET are the answer
to the condition is only making the situation worse for us.

Competing interests: None declared


Using the correct tool for the right job 13 February 2010

Kelly Latta,
medical writer

It is unfortunate that neither the editorial staff or Drs. Santhouse,
Hotopf, and David have anything new to add in terms of relevant information.

Like talk therapy, CBT has also been shown to help some patients in some
cases with other organic diseases as well as those who may not even have a
disease. It is not the secret they seem to think it is. But neither is it
the only tool in the shed.

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).

It is illogical to assume that any one treatment is going to meet the needs
of such a heterogenous group.

Nor do the authors mention that research with anti-virals and immune system
modulators show that in appropriate subgroups these may be the most
effective treatments.
Nor do they mention pacing.

As to causes of death in CFS, there is not much research, but the research
that exists shows that patients are most likely to die of cancer, heart
failure and suicide decades sooner than their contemporaries in the general
population. (Patients with AIDS don't die of AIDS either, but they do die.)

As for suicide, it is always unfortunate when stigmatization by the medical community has such a negative iatrogenic effect.

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Competing interests: None declared


No room for complacency 13 February 2010

Derek FH Pheby,
Visiting Professor of Epidemiology, and Project Coordinator, National ME/CFS
Faculty of Society and Health, Bucks. New University, 106, Oxford Road,
Uxbridge, UB8 1NA

Santhouse et al (1) quoted with approval Mr. Justice Simon's judgment in
the judicial review of the NICE guidelines on CFS/ME, that there is "... a
perception that this is an area of medicine where contrary views are not to
be voiced, and where scientific enquiry is to be limited, [that] is damaging
to science and harmful to patients" (2). They will therefore not object if I
venture an opinion contrary to theirs.

They cite a recent systematic review (3) 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 (4).

There is no evidence at all that such interventions would have benefited
Lynn Gilderdale, or others in a similar position, or averted the tragic
outcome of this case. A recent large-scale survey by the ME Association
found that over 50% of respondents reported that behavioural treatments such
as cognitive behaviour therapy and graded exercise therapy were either
ineffective or made their condition worse
(5). This is consistent with my
own recently published study (6), which indicated that inappropriate
treatment in the early stages of the illness was an important factor in the
development of severe disease, and a survey by Action for ME in which a
clear majority of severely affected respondents reported delays in diagnosis
and lack of care and support from healthcare professionals

It is not so much that " air of defeatism exists within the medical
profession about this condition, particularly for those who are severely
affected." It is rather that a realistic assessment is that we do not yet
have sufficient understanding of this very unpleasant illness to treat it
effectively, and to suggest that we do is unjustifiably complacent. A much
more positive note was struck by a letter in the "Daily Telegraph",
published in the aftermath of the acquittal of Kay Gilderdale, which was
signed by twenty authorities in the field, including clinicians,
researchers, politicians, and leaders of voluntary organisations (8). This
stated clearly that, if any positive lesson was to be learned from the death
of Lynn Gilderdale and the subsequent trial of her mother, it was that there
is an urgent need for better services for people with ME, and more research,
in order to disentangle once and for all the underlying pathology of this
disease and to develop effective treatments.


1. Santhouse AM, Hotopf M, David AS. Chronic fatigue syndrome (editorial).
BMJ 2010; 340: 738.

2. R (Fraser and Short) v NICE Case numbers CO/10408/2007 and CO/10435/2007

3. 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.

4. 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

5. Shepherd C. Mind or Body? (Letter). New Scientist 2009; no. 2702 (2nd.

6. Pheby D, Saffron L. Risk factors for severe ME/CFS. Biology and Medicine
(2009); 1(4):50-74.

7. "Severely Neglected", London, Action for ME, 2001.

8. The Countess of Mar et al. Breaking the ME enigma (letter). Daily
Telegraph, 6 February 2010.

Competing interests: None declared

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