Editorial in British Medical Journal

Kati

Patient in training
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Defeatism is undermining evidence that chronic fatigue syndrome can be treated:


Public release date: 10-Feb-2010
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Contact: Emma Dickinson
edickinson@bmjgroup.com
44-020-738-36529
BMJ-British Medical Journal
Defeatism is undermining evidence that chronic fatigue syndrome can be treated

Editorial: Chronic fatigue syndrome

An air of defeatism exists within the medical profession about chronic fatigue syndrome that is undermining evidence that it can be treated, argue three senior doctors in this week's BMJ.

The recent acquittal of Kay Gilderdale, who had been charged with the attempted murder of her 31 year old daughter Lynn, has led to blanket press coverage. Yet Alastair Santhouse, consultant at The South London and Maudsley NHS Foundation Trust and colleagues from Institute of Psychiatry, King's College London, argue that the media has largely portrayed the condition as a progressive, paralysing, and commonly fatal illness, and little has been said about the uncertainties and controversies that this diagnosis has always attracted.

While not commenting on this specific case, the authors point out that severe presentations of chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) such as that of Lynn Gilderdale are unusual, and that, if a diagnosis of CFS/ME is made, data clearly show that mortality is not increased.

The greatest risk to life is likely to be suicide, they explain. And this is often linked to depression that can be effectively treated.

Treatments such as cognitive behavioural therapy and graded exercise therapy have also been shown to work in CFS/ME and are recommended by the National Institute for Health and Clinical Excellence (NICE). In patients with severe CFS/ME, such programmes may be prolonged, but they can be the trigger for improvements and sometimes dramatic recovery, add the authors.

In contrast, the alternative to treatment is often no treatment, and this can have a disastrous effect on the patient, who may feel that the medical profession has given up on them as a hopeless case, they warn.

Undoubtedly current treatments could be improved, recovery may not be complete in many cases, and access to services for those too disabled to attend hospital clinics needs to be improved, they write. Furthermore, doctors are often uncertain about what they are dealing with, and perhaps inevitably a breakdown of trust between doctors and the patients and their families often occurs.

But they believe that the medical profession must continue to go with the evidence in choosing treatments, in what can be a fraught clinical situation. "We owe it to our patients and to our professionalism to do what we can to help those with this potentially treatable condition because, notwithstanding the difficulties, this is our primary duty," they conclude.

###

Reading this piece, I thought reading the title that perhaps our british doctors had a change of heart. But no!!! They want us all to do CBT and GET. This is really insulting and annoying. What kind of evidence do they get that indeed CBT and GET works?:ashamed:


British Medical Journal Editors, please read the recent studies from Lombardi, and all the evidence that has accumulated over the years that ME/CFS is an organic disease. Please open your mind to the possibility of a retrovirus. Imperial College had a biased perspective and different scientific techniques and failed to find XMRV in any of their 186 samples. Does it mean they are right? Obviously not, because there are some XMRV + patients in LK already, and somebody out there is donating blood not knowing they are infected with this retrovirus.

May Lynn and Sophia's deaths have not been in vain. It's time for serious research now.
 

MEKoan

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Kati,

I had a very similar experience as you reading this. My heart lifted... and then sank - deep!
 

justinreilly

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Thanks for the alert.
BMJ prints this exact same nonsense on the regular.
I sent them a little note:

Emma Dickinson and BMJ:

You've heard it all before- the mountain of bench science and clinical experience that ME/CFIDS is a specific, somatic, nonpsychological, extremely debilitating disease.

I can't say anything better in response to your editorial that Malcolm Hooper (in "Defiance of Science" inter alia), Angela Kennedy and others have not printed.

It boggles my mind that you and BMJ in conjunction with the Wesseley school continue to wage your war on ME patients resulting in tremendous iatrogenic morbidity. First- Do no harm.

As Paul Cheney has said of your ilk- your "graves will be desecrated."
 
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The whole article sucks.

"The greatest risk to life is likely to be suicide, they explain. And this is often linked to depression that can be effectively treated."


- to me this seems to be implying that Lynn wanted to die because she was depressed. No mention of how very physically ill she was or of the vaccination that caused her illness.


"recovery may not be complete in many cases"

- I thought the recovery rate was between 5 and 10%? I guess it depends whether you're looking at M.E. or Reeves-Wessely syndrome. I've been severely affected for 23 years now & my 'recovery' hasn't even started.


"the media has largely portrayed the condition as a progressive, paralysing, and commonly fatal illness"

- well they were talking about Lynn, and for her and all the other profoundly affected patients the illness presents as that bad. The media usually portray us as a load of lazy scroungers (the Guardian still does).

"and little has been said about the uncertainties and controversies that this diagnosis has always attracted."

- they fail to say that this is because because Wessely, White, Sharpe, Chalder etc have deliberately muddled it up with psychological disorders. oops.
 

jace

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Kati, you ask what sort of evidence there is that CBT and GET works. There is a Dutch study I somehow downloaded from the BMJ site. I can only find the abstract now, but I may have attached it below, first time I've tried that..:confused:

They took 71 consecutively referred patients age 10 - 17., using CDC criteria. 36 were assigned to therapy, one session a fortnight for five months. 35 controls did nothing.

Six of the therapy group dropped out in the first half of the study time. Here's a cut and paste extract

"Active patientsFor relatively active patients treatment started with them learning to recognise and accept their current state of fatigue and impairment. Subsequently, they reduced their levels of activity and learnt to respect the limitations. After achieving this balance, the patient started to build up activity levels. This protocol was used in the trial of Prins et al.4

Passive patientsFor passive patients we started a systematic programme of activity building as soon as possible. To assure adherence, we first addressed and challenged their beliefs that activity would aggravate symptoms. In such patients it is thought to be counterproductive to reduce activity levels any further or reinforce the patients need to respect limitations."

I love that - the active patients were taught to accept their need to respect their limitations, while the passive ones were told to reject their perceived need for limitation.

For the younger kids, the parents were trained as cheerleaders. Over 15's did it for themselves.

At the end of the five month study, they show that the therapy group had significant improvement in school attendance, symptom distress...I don't have the brain to understand their method of scoring, see if you do -
--------------------------------------------------------------------------------------------------
Table 4 Clinically significant improvement at five months in fatigue severity
(checklist individual strength), functional impairment (SF-36), and school
attendance (mean percentage) and self rated improvement by treatment
group
Condition No (%) improved------------ Treatment effect (95% CI)----------P value (whatever that is)
Fatigue severity*
Cognitive behaviour --21/35 (60)----------0.39 (0.17 to 0.61-------------------0.01
Waiting list 7/34 (21)

Physical functioning
Cognitive behaviour -----22/35 (63)------- 0.39 (0.17 to 0.61)------------------0.01
Waiting list ----------------8/34 (24)

Full school attendance
Cognitive behaviour -----19/33 (58)--------0.29 (0.06 to 0.53)------------------0.02
Waiting list ----------------10/34 (29)

Self rated improvement
Cognitive behaviour ------25/35 (71)--------0.27 (0.04 to 0.78)-----------------0.02
Waiting list ----------------- 15/34 (44)

*Reliable change index >1.96 and cut off score of ≥35.7.
Increase of ≥50 or end score of ≥75.
Two participants were left out of analyses because they had taken their final examinations
and therefore were not required to attend school at five months.
Answer yes to statement I have completely recovered or I feel much better but still
experience some symptoms.
------------------------------------------------
They are a bit better - or they just wanted to please the nice doctor. I would want to know how things were three months after the therapy. And what was the story for the six that dropped out. That's 15% of the group, a fair percentage.

Don't know about you, but I've given up trying to pull myself up by my bootstraps, because the damage I suffer afterwards shows me that that is the slippery slope to severe ME.
 

Attachments

jace

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Absolutely. but you were asking the psych lobby justify their stand on CBT/GET. I think the above Dutch study is one of their source works. It is important that we understand their thinking, in order to be able to persuade others effectively of our case. I really think we should be careful of avoiding any mud slinging, while remaining strong and firm. After all, we have a huge advantage - we have inside knowledge ;):D:eek:
 
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According to the CDC criteria, the study says. Well, that may be the problem.

CFS experts know, as Bell stated, if you get out of the house, do some shopping and begin to feel better, then that is likely depression. If you push yourself to get out, do some shopping and you feel worse, you likely have CFs.

Tina
 

Roy S

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How factual is this part?

"the media has largely portrayed the condition as a progressive, paralysing, and commonly fatal illness"
 
R

Robin

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Kati, here's the cochrane reviews of CBT and GET. A lot of the studies in their meta-analysis are work of the Wessely school.

Cochrane on CBT: The evidence base at follow-up is limited to a small group of studies with inconsistent findings.

Cochrane on GET: Based on five included studies, this systematic review cautiously concludes that exercise therapy is a promising treatment for chronic fatigue syndrome. However, studies of higher quality are needed that involve different patient groups and settings, and that measure additional outcomes such as adverse effects, quality of life and cost effectiveness over longer periods of time.

So there is "evidence" that CBT/GET works (which is vigorously contested in the patient community) but an objective analysis finds limits and holes in the positive findings.
 
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Not sure if anyone has seen the responses tot he BMJ editorial.


Why do doctors refuse to believe patients? 11 February 2010

Ellen Goudsmit,
Visiting Research Fellow, UEL
London TW11 9QX
Send response to journal:
Re: Why do doctors refuse to believe patients?

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 2007;46:253-72.

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 6BY
Send response to journal:
Re: Press ahead with funding bio-medical research into M.E./CFS

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.
www.afme.org.uk

Competing interests: None declared

Welcomed common sense and clarity 11 February 2010

Matthew R Broome,
Associate Clinical Professor of Psychiatry
University of Warwick
Send response to journal:
Re: Welcomed common sense and clarity

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 debate.

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
 
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I realise the article was talking about the medical profession, but I suspect most of us do not feel defeated. We are hopeful, particularly when we have people like Mikovits and Kerr working to find the cause.
 

MEKoan

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http://freespace.virgin.net/david.axford/psy-algy.htm

The Psychologisation of Illness

Ellen Goudsmit

From the above paper:

Psychologisation in the literature on aetiology.

[FONT=&quot]Some of the most interesting examples of psychologisation can be found in the theoretical discussions of disease. For instance, Booth (5) offered a psychodynamic view of tonsillitis, arguing that many cases represented a love relationship with a bacteria in which the patient establishes "libidinous contact on the earlier oral instead of the later genital level... the object of the oral strivings is no longer another human being, but bacteria... Such substitutions of bacteria for a human being makes biologic sense considering the fact that the basic object of the sex act is the copulation of the sex cells: primitive unicellular organisms like bacteria."[/FONT]

[FONT=&quot]This is a typical case of psychologisation, not only because of the poor quality of the supportive evidence but also because the author ignored all the relevant data to the contrary. For more recent examples of speculative and over simplistic hypotheses, see Hay and Millenson (6, 7).[/FONT]

[FONT=&quot]Most cases of psychologisation are not as extreme and indeed, may not be recognised except by colleagues who are familiar with the research. Perhaps the best examples of the more subtle forms of psychologisation can be found in the British medical literature on myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS)1. Many articles on these conditions feature highly selective discussions of the scientific data, with an emphasis on findings relating to psychiatric morbidity and a tendency to ignore or dismiss evidence of disease (8).[/FONT]
 

Carrigon

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What is it going to take to get them to stop pushing CBT/GET? Those who truly have severe CFIDS/ME absolutely do NOT benefit from this. It makes us worse. The only people who can benefit from it are people have been misdiagnosed and are just depressed.

I just don't understand how they can keep pushing this when the patients are clearly ill with severe physical and neurological symptoms. It's like pushing someone with a broken leg to walk and run on it. It makes it worse.
 

Dolphin

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Don't forget to post comments on the BMJ website

Don't forget to post comments on the BMJ website http://www.bmj.com/cgi/eletter-submit/340/feb11_1/c738 . It isn't easy of course to get into the print version but it's not to hard to get a comment up on the site.

It probably helps to make it look at least a little like a medical letter e.g. have at least one reference. Of course, one easy reference is the article itself (1).

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

Dolphin

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At the end of the five month study, they show that the therapy group had significant improvement in school attendance
One thing to keep in mind is that attending school doesnt mean these students achieved their potential in exams. I get the impression from the Tymes Trust that many children with ME/CFS who are coaxed back to school following CBT dont necessarily do well.