Price of Cochrane #mecfs #seid

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#mecfs #seid Cochrane GET Review *Jonathan R. Price* Larun, Bruberg, Odgaard-Jensen

https://twitter.com/TomKindlon/status/565539080445112320

http://www.ncbi.nlm.nih.gov/myncbi/ellen%20m.goudsmit.1/comments/

https://books.google.co.uk/books?id=cud8PW92ulQC&pg=PA311&lpg=PA311&dq=%22Chronic+Fatigue+Syndrome:+A+Real+Disease,+A+Real+Problem%22&source=bl&ots=-s8f4lJwyJ&sig=_UQJt3-nk2JBp8gemGGpHTbbogk&hl=en&sa=X&ei=8OnjVNuWLIXJPZ7zgJAF&ved=0CCoQ6AEwAQ#v=onepage&q=%22Chronic%20Fatigue%20Syndrome%3A%20A%20Real%20Disease%2C%20A%20Real%20Problem%22&f=false


Chronic Fatigue Syndrome: A Real Disease, A Real Problem

Jonathan R. Price

http://www.psych.ox.ac.uk/team/senior-researchers/jonathan-price

Chronic fatigue syndrome (CFS) is one of the most challenging medical problems for doctors to manage and for patients to experience.

Sharpe and Wessely are to be commended for their thorough and balanced approach in their review of current evidence.

CFS sits within a vexatious group of disorders, known variably as “functional”, “psychosomatic”, and “somatoform”.

These disorders present major problems, not least because of the apparent complexity of their aetiology, and associated difficulties in engaging many patients.

Sharpe and Wessely do not shirk from wholeheartedly embracing the biopsychosocial perspective, in which a person’s social and psychological context, in addition to relevant biological factors, is a key factor in their illness and recovery [1].

The adoption of this perspective triggers, for some, the question of whether CFS is a “medical” or a “psychiatric” condition.

This question is unnecessarily polarizing.

Psychiatrists are excited by the burgeoning evidence for the relevance of psychological interventions in the management of a wide range of disorders, many of which are “physical”, and all of which are legitimate illnesses like CFS that cause real disability and distress.

CFS is obviously a disease, with unmistakable associated distress and disability.

As a psychiatrist, I do not doubt this.

I regard depression as an important disease of the nervous system, just as I regard diabetes mellitus as an important disease of the endocrine system.

Depression may be “all in the mind”, but it is a true disease.

Why, therefore, does the suggestion that the aetiology of CFS involves potent psychological factors arouse such passions, among many patients and some doctors?

Isn’t it good news that, according to the cognitive-behavioural model, biological factors are only partly responsible for the illness, or largely reversible [2] ?

For many CFS patients, this is not the case.

The suggestion that psychological factors are relevant or, indeed, pivotal, is seen as questioning the legitimacy of the illness, not taking their problems seriously, or dismissing their experience and expertise [3].

Doctor and patient are potentially placed at odds, in a situation that has been likened to a political arena, where facts and beliefs are opposed and confused [4].

Similar responses are seen in other common problems with which biomedicine struggles to provide clear aetiological or therapeutic answers, such as low back pain [5].

The common reluctance of patients to accept an integrated, biopsychosocial model of aetiology and, thereby, of treatment is a problem for both patients and doctors.

Sharpe and Wessely try hard to embrace concerns about the biopsychosocial approach.

And so they should.

Meaningful and effective engagement with CFS sufferers, their carers, and their support and advocacy organizations is pivotal to successful treatment.

Fifty, or even twenty, years ago, the doctor’s “expert” view would inevitably have triumphed over that of the patient’s.

By 2005, the balance of power has shifted as governments have endorsed the validity and centrality of the patient’s view, and embedded patient power within the delivery and management of health care.

Simultaneously, the Internet has given ready access to medical evidence of all kinds.

The patient is also an expert now, and a powerful one.

How should the doctor respond?

Help the patient make his own decision, rather than dominate or coerce.

Assist the patient to understand the evidence.

Be frank about uncertainty—most patients will appreciate candour.

Encourage the patient to have an open mind, rather than close down therapeutic possibilities.

Encourage an experimental approach—discuss and facilitate therapeutic ‘n of 1’ trials.

Finally, be positive about the prospects for improvement.

As Sharpe and Wessely state, presenting a positive diagnosis, with an aetiological formulation that addresses biological, psychological and social factors, and a management plan that clearly relates to that formulation, is “an essential starting point for effective management”.

The key message is that CFS is not a fixed, unalterable disease, lying outside the patient’s control.

Rather, CFS is a real disease that is reversible by the patient’s own efforts, alongside those of professionals.

Self-care, appropriately informed and supported, is the focus here.

Relatively simple interventions may be effective, if they have a clear rationale that is well communicated to patients [6].

Recent decades have seen an increased public interest in “stress” and its consequences.

Simultaneously, medicine has been criticized for being too biomedical and neglecting “the whole person”.

It therefore seems surprising that many CFS patients are reluctant to embrace a more holistic, biopsychosocial, approach to their management.

We need the help of sociologists and anthropologists to try to understand this paradox, which is at the core of many problems that biomedicine struggles to understand.

But biomedicine itself may come to our rescue.

Functional neuroimaging promises to visualize the currently invisible and, thereby, to explain the inexplicable.

As psychiatry becomes more biological, we will be able to demonstrate the “organic” basis of what has hitherto been “functional”.

Apparent abnormalities in brain function in CFS patients are already being reported [7], and we look forward to the endorsement of the role of the brain in this problematic disorder.

[ see http://www.wolfson.qmul.ac.uk/current-projects/brain-in-pain-ii
http://www.wolfson.qmul.ac.uk/current-projects/brain-in-pain-iii
http://twitdoc.com/upload/maxwhd/bourke-pain.pdf
http://www.ncbi.nlm.nih.gov/pubmed/25598410
http://www.ncbi.nlm.nih.gov/pubmed/23967878
http://www.wolfson.qmul.ac.uk/centres/cfp/liaison etc]

REFERENCES

1. White P. (Ed) (2005) Biopsychosocial Medicine. Oxford University Press: Oxford.
2. Surawy C., Hackmann A., Hawton K.E., Sharpe M. (1995) Chronic fatigue syn drome: a cognitive approach. Behav. Res. Ther. 33: 535—544.
3. Asbring P., Närvanen AL. (2002) Women’s experiences of stigma in relation to chronic fatigue syndrome and fibromyalgia. Qual. Health Res. 12: 148—160.
4. Banks J., Prior L. (2001) Doing things with illness. The micro politics of the CFS clinic. Soc. Sci. Med. 52: 11—23.
5. Johansson E.E., Hamberg K., Lindgren G., Westman G. (1996) “I’ve been crying my way” —qualitative analysis of a group of female patients’ consultation experiences. Fam. Pract. 13: 498—503.
6. Powell P., Bentall R.P., Nye F.J., Edwards R.H.T. (2001) Randomised controlled trial of patient education to encourage graded exercise in chronic fatigue syn drome. Br. Med. J. 322: 387—390.
7. DeLange F.P., Kalkman J.S., Bleijenberg C., Hagoort P., van der Werf S.P., van der Meer J.W., Toni I. (2004) Neural correlates of the chronic fatigue syndrome—an fMRI study. Brain 127: 1948—1957.
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