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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I remember seeing this paper a while back:- http://forums.phoenixrising.me/inde...e-same-coin-chronic-fatigue-and-burnout.3784/Yes, maybe they have hypothesised that the 'phobia' element comes later in the course of the illness.
But I've never seen this clarified anywhere.
INVITED REVIEW
The act of diagnosis: pros and cons of labelling chronic fatigue syndromeMarcus J H Huibers and Simon WesselyPsychological Medicine, Page 1 of 8. f 2006 Cambridge University Pressdoi:10.1017/S0033291705006926"Like it or not, CFS is not simply an illness, but a cultural phenomenon and metaphor of our times.""Labelling physical symptoms as an illness carries the risk of the symptoms becoming self-validating and self-reinforcing, often promoted by the Internet, support groups, self-help literature and mass media.""The ways in which CFS patients perceive themselves, label their symptoms and appraise stressors may perpetuate or exacerbate their physical and psychosocial dysfunction (Afari & Buchwald, 2003).""Many CFS patients, particularly in hospital settings, share a strong conviction that their symptoms are physical in nature. A plausible explanation is that biological illness attributions provide legitimacy, alleviate personal responsibility and protect against stigma (HortonSalway, 2001), as opposed to psychosocial illness attributions. As a result, CFS patients will seek doctors who offer explanations in keeping with their own illness beliefs.""Diagnosis elicits the belief the patient has a serious disease, leading to symptom focusing that becomes self-validating and self reinforcing and that renders worse outcomes, a self-fulfilling prophecy, especially if the label is a biomedical one like ME."
I think Wessely is of the belief that belonging to a social network (i.e. a support group) reinforces illness-beliefs, and therefore prolongs illness.
So I'm not sure if he believes that tea and sympathy are actually the best approaches to treatment.
The same for receiving welfare benefits: I think he believes that receiving welfare benefits reinforces illness beliefs.
My understanding is that some of the NHS clinics do not provide letters/evidence for welfare benefit claims because such letters would be a 'conflict of interest'. (i.e. they would not help the patient get better, but would reinforce the patients' belief that they are ill.)
I'm going from memory, so I could have some of this wrong, but I seem to remember seeing evidence for this.
(Bolding added by me.)4. The prognosis for those who acquire the label of "ME" is at the moment poor. The only three prognostic studies conducted to date all suggested that poor prognosis, and failure to improve, is closely related to illness beliefs of a solely physical origin to symptoms.
5. It seems likely that the greater the disability, the more likely is the disorder to be associated with either misdiagnosed psychiatric disorder or poor illness management. Many are iatrogenic ie Doctors contribute in perpetuating the disease and its symptoms.
6. [...] It is a treatable disorder but its management is deplorable at present, the worst thing to do is to tell them to rest.
Rehabilitation is essential, exercise is good for these patients, prolonged inactivity causes adverse physical and psychological consequences.
Most cases can be expected to improve with time.
7. As regards benefits: - it is important to avoid anything that suggests that disability is permanent, progressive or unchanging. Benefits can often make patients worse.
(Bolding is from the original document, underlining is mine.)[...] The main difference between CFS and the major psychiatric disorders is neither aetiological, nor symptomatic, but the existence of a powerful lobby group that dislikes any association with psychiatry.
It is also a most unfortunate message to send sufferers. It colludes with the erroneous belief that this is a severe disorder of neurological functioning, for which there is little effective treatment, and a poor prognosis. It will discourage any sensible efforts at rehabilitation. As we, and now many other groups, have shown that the only determinant of outcome in this condition is strength of belief in a solely physical cause, then it will also itself contribute to disability and poor outcome. I cannot believe that is the intention of the Department, if only on grounds of cost!
I believe the Department is making an error if it accepts the partisan views put forward by pressure groups as a basis for making medical decisions. I also believe that it is a decision that the Department will come to regret, since it seems likely the result will be an ever increasing stream of claims for permanent benefits in people who might otherwise have had a chance of recovery.
(My bolding.)However, the simple combination of history, examination and basic tests will establish those who require further investigation. [48] [49] In the majority this simple screen will be normal, and over investigation should be avoided. Not only is it a waste of resources, it may not be in the patients' interest, and may reinforce maladaptive behaviour in a variety of ways.
It is certainly true that I and my colleagues consider that anxiety about the consequences of activity is one factor perpetuating disability in CFS patients. However, I should point out that, unlike the studies of muscle function, this is by no means proven. Furthermore it is probably only one of many factors contributing to disability, and even then may only be of importance in a small group.
Well, if anyone has any doubt, you've only got to read the following paper...
Edit:
"It should be noted that the majority of referred statements comes from discussion papers, rather than from studies presenting empirical support for the accounts that are made."
The act of diagnosis: pros and cons of labelling chronic fatigue syndrome
MARCUS J. H. HUIBERS1* AND SIMON WESSELY2
2006: http://www.simonwessely.com/Downloads/Publications/CFS/179.pdf
ABSTRACT
Background.
One of the many controversies surrounding chronic fatigue syndrome (CFS) is the
possible impact of the diagnostic label : is it disabling or enabling? In this paper, we discuss the pros and cons of labelling CFS.
Method.
A narrative synthesis of the literature.
Results.
Diagnosed CFS patients have a worse prognosis than fatigue syndrome patients without such a label.
The ways in which CFS patients perceive themselves, label their symptoms and appraise stressors may perpetuate or exacerbate their symptoms, a process that involves psychological, psychosocial and cultural factors.
Labels can also lead to conflicts with doctors who fear diagnosis might lead to worse outcomes.
However, on the other hand, finding a label that fits one’s condition can provide meaning, emotional relief and recognition, whilst the denial of the diagnosis of CFS in those who have already reached their own conclusion can be very counter productive.
The act of diagnosis therefore seems to be a trade-off between empowerment, illness validation and group support, contrasted with the risk of diagnosis as self-fulfilling prophecy of non-recovery.
Conclusions.
The answer to the question of ‘to label or not to label ’ may turn out to depend not on the label, but on what that label implies. It is acceptable and often beneficial to make diagnoses such as CFS, provided that this is the beginning, and not the end, of the therapeutic encounter.
It is acceptable and often beneficial to make diagnoses such as CFS, provided that this is the beginning, and not the end, of the therapeutic encounter:
Which is why we oversold the results of the PACE Trial and why Newspapers were so sensationalist - we told them to give you hope dudes!!
page 2
ME versus CFS: implications of the label
"Apparently, the label ME itself may have an adverse effect compared to the label of CFS."
page 2
Illness perception
"There is compelling evidence that a pessimistic illness perception is an important perpetuating factor in CFS....
Additional, although indirect evidence on the impact of illness perception comes from a recent trial in which conversion disorder patients improved when told that full recovery constituted proof of a physical aetiology, whereas non-recovery would constitute proof a psychiatric origin (Shapiro & Teasell, 2004)."
"Ultimately, a pessimistic illness perception can become a self-fulfilling prophecy of nonrecovery. This group of CFS patients tends to view their symptoms as part of an overwhelming, mysterious, unexplainable disease that struck them out of the blue and from which they most likely will never recover. These illness expectations are often fuelled by the media, support groups (not least because support groups have an inherent bias towards those who have not recovered) and other sufferers, as we will discuss in the following section."
page 2-3
Psychosocial and cultural factors
Page 3
The road to diagnosis
"Not all, indeed not many, patients fulfilling the criteria for CFS receive a formal diagnosis. As it appears, CFS is largely under-detected in the general population. The probability of receiving a formal diagnosis depends on individual factors
such as access to health care, one’s personal view of the illness, readiness to engage in a lengthy process of vigorous health-care seeking, the determination to find a diagnosis that matches one’s symptoms, beliefs and aspirations,
and on the attitude of the doctors that are consulted."
"...most importantly, the act of labelling is an intervention in itself that brings an end to the unbearable burden of uncertainty. A controversial diagnosis like CFS may not be first choice as a label, but it is better than nothing at all (Zavestoski et al. 2004)."
p 3-4
The battlefield of medical practice
"Although the diagnostic process of CFS seems straightforward and unambiguous, the nature of CFS often spirals bitter debates between doctors and patients (Sharpe, 1998)."
"Medical trainees (Jason et al. 2001) and qualified doctors (Steven et al. 2000) alike judge CFS primarily to be a psychological or psychiatric problem. Patients who present with a self-diagnosis of CFS are regarded as difficult and time-consuming. Such attitudes of hostility may, however, be confounded by doctors’ frustrations of being unable
to help these patients (Hartz et al. 2000; Salmon & Hall, 2003)."
"Consequently, many CFS patients encounter doubts, disbelief and rejection when consulting their physician, and feel the reality of their symptoms is denied. The search for diagnosis then turns into a contest over diagnosis. This battle may contribute to the course of illness : if you have to prove you are ill, you cannot get well (Hadler, 1996)."
"At best, these conflicts over the diagnosis of CFS will lead to negotiations between doctors and patients (Zavestoski et al. 2004), but many patients will retreat from their doctor’s office and reach out to others for help (Stanley et al. 2002): doctors who are sympathetic to the cause of CFS, alternative therapists who offer explanations in keeping with their own views, and, if all else fails, the act of self-diagnosis."
page 4
Labelling CFS: the advantages
"Most arguments in favour of labelling CFS highlight the empowering appeal of a diagnostic label that fits one’s symptoms. The act of diagnosis is central to the experience of CFS. From this perspective, shared by many patients, receiving a CFS diagnosis is an intervention in itself, a breakthrough that brings an end to the burden of uncertainty and de-legitimization and that determines the course of action to follow.
Diagnosis generates comfort, relief, acceptance, credibility and legitimacy and leads the way to treatment and social and economic benefits. Diagnosis leads the way to patient organizations that provide support and information, although this information may not be consistent with the evidence base. Diagnosis can provide a refuge that preserves self-esteem and protects from (or takes away) stigma and the feeling of guilt. Diagnosis offers a socially accepted reason for failure to cope, especially if all miseries can be pinned on that disease. The diagnosis of CFS brings meaning to the suffering, a cathartic voice, much like a religious experience.
It brings understanding and acceptance from others as well, although it does not generate sympathy from everyone."
Labelling CFS: the disadvantages
page 5
"Sound evidence for the treatment of CFS is still poor. For patients seeking active treatment, cognitive-behavioural therapy (CBT) and graded exercise therapy (GET) are currently the best available options (Whiting et al. 2001).
However, it should be kept in mind that evidence from randomized trials bears no guarantee for treatment success in routine practice. In fact, many CFS patients, in specialized treatment centres and the wider world, do not benefit from these interventions.
When it comes to the management and treatment of CFS patients, there is still a lot to be learned."
"Although we have focused on psychological, psychosocial and cultural factors only, we do not wish to deny there are physical complexities of CFS that exist beyond our present scope.
We also acknowledge some people will argue that the only question worth asking about CFS is what is the cause, and that discussion about the meaning of diagnosis and its risks and benefits is at best meaningless and at worst an offensive distraction.
Finally, it should be noted that our conclusions are primarily based on common sense, in the absence of a sound evidence base."
Page 18 of National Archive NB 141-1.pdf, the 2nd page of a letter from Dr Simon Wessely to Dr Mansel Aylward of the Department of Social Security, regarding the labeling of CFS/ME as a neurological disorder. I think the date says "1st Nov 1993", though someone wrote "Oct" over "Nov".
(Bolding is from the original document, italics are mine.)
I feel sleazy just transcribing this trash
Chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (or encephalopathy) (ME) is a relatively common illness. The physical symptoms can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions. CFS/ME places a substantial burden on people with the condition, their families and carers, and hence on society...
Many different potential aetiologies for CFS/ME – including neurological, endocrine, immunological, genetic, psychiatric and infectious – have been investigated, but the diverse nature of the symptoms can not yet be fully explained. The World Health Organization (WHO) classifies CFS/ME as a neurological illness (G93.3), and some members of the Guideline Development Group (GDG) felt that, until research further identifies its aetiology and pathogenesis, the guideline should recognise this classification. Others felt that to do so did not reflect the nature of the illness, and risked restricting research into the causes, mechanisms and future treatments for CFS/ME...
http://publications.nice.org.uk/chr...lgic-encephalomyelitis-or-encephalopathy-cg53
Valentijn, this one has been widely discussed I believe. Wessely does not even now believe there is sufficient evidence to equate with 'encephalomyelitis'.
As we, and now many other groups, have shown that the only determinant of outcome in this condition is strength of belief in a solely physical cause, then it will also itself contribute to disability and poor outcome.
As we, and now many other groups, have shown that the only determinant of outcome in this condition is strength of belief in a solely physical cause, then it will also itself contribute to disability and poor outcome.
The quote goes far beyond discussing terminology, and puts ME/CFS into the realm of the purely psychological, and responsibility for failure to recover solely upon our beliefs:
I've probably lost the plot - just woke up - do you have a citation for that quote please? Thanks.