The Psychiatric view of ME/CFS. What is it?

[Orla]

The Psychiatric explanation of ME/CFS

I am going to post this in different sections as it is long. I might edit in a few other quotes over time from other authors and sources.

Obviously not all psychiatrists hold these views, only the ones who think ME/CFS is a behavioural and psycho-social problem. Not all of the people who hold the psychiatric view of ME/CFS would agree fully with all of these views, but you see variations of these views cropping up again and again. Even people who think ME/CFS is physical can be somewhat influenced by these view (I think sometimes not realising the background to the ideas).

I think it is important to understand these views as these people have been aggressively promoting the view that our symptoms are a result of psychological and behavioural factors, and not due to an ongoing organic physical disease. They have blocked progress into biomedical investigation and treatment of ME/CFS, as they know that an organic explanation is inconsistent with their theory of ME/CFS. Basically you cannot agree with them, and think that ME/CFS is an organic condition like MS, Lupus or the like.

It is the practical effects that these views have on medical care, research, and access by patients to services in general (medical, social, welfare etc.) that makes it important to argue against the dominance of these views. If you wonder sometimes why you are treated so badly, well this is it.

People who hold these views have consistently, and very successfully, blocked progress for patients in the UK, where “specialist” CFS clinics have been set up that offer no tests or biomedical treatments, just behavioural interventions.

It is interesting to look at the ideas contained in one document, the Royal Colleges Report (1996. Go to http://www.cfs-news.org/rcp.htm for more info) as it reflects many of the psychiatric views on ME/CFS, and it is interesting to see that in many ways these people got their way in influencing the UK health and welfare-services approaches to this illness.

Under a section Essential skills/tasks for a multidisciplinary CFS unit: this is the approach advocated by the Royal Colleges Report: “Perform the minimum number of investigations” and ”Provide appropriate and unambiguous reassurance when there is no evidence of relevant physical pathology” [which there isn’t going to be if you don’t run the tests!] Royal Colleges Report 1996.

Advocates of the psychiatric theory of ME/CFS think that CBT and GET can cure ME/CFS, and sometimes argue that the patients who are not helped by these strategies are just poorly motivated, or are getting some gain from adopting the sick role. For example:

“Conclusions: Poor outcome in the psychological treatment of chronic fatigue syndrome is predicted by variables that indicate resistance to accepting the therapeutic rationale, poor motivation to treatment adherence or secondary gains from illness.” Predictors of response to treatment for chronic fatigue syndrome RICHARD P. BENTALL, PhD; PAULINE POWELL, PhD and FRED J. NYE, FRCP,; RICHARD H. T. EDWARDS, FRCP (retired), The British Journal of Psychiatry (2002), 181: 248-252. http://bjp.rcpsych.org/cgi/content/full/181/3/248

The CBT/management these people offer is not to help people cope with their illness better, but to try to get the patient around to their way of thinking about their illness, and get the patients to get themselves better through doing more.

“..the doctor must sympathise with the patient’s complaint of extreme fatigability, but must take care always to encourage co-operation, but not collusion. The prevention of disability, particularly in primary care, requires encouragement to be active....We are ...concerned about such advice as the need to reorganise life to avoid unnecessary pressure, or to ‘listen to your body’. This appears to endorse the advice often given to sufferers to ‘live within your limits’, which carries a risk of perpetuating disability....we have similar concerns about ‘helping patients to come to terms with losses which are consequences of disease’...for the majority it runs the risk of colluding with disability...we have concerns about the recent growth of ‘counselling’ for CFS sufferers”. Chronic Fatigue Syndrome: Report of a joint working group of the [UK] Royal Colleges of Physicians, Psychiatrists, and General Practitioners, October 1996 (this is referred to commonly as the Royal Colleges Report)

 

[Orla]

They think we are tired, not sick

They think that we don’t have an organic physical illness.

"NO EVIDENCE OF DISEASE" Handout to patients attending the Royal Liverpool Hospital CFS Clinic (UK)

My own view has long been that the controversies about CFS are essentially those of a much larger, if less vocal, group of patients. That is the one-third of medical outpatients who have conditions that are defined only in terms of symptoms without the presence of what we call disease”
Michael Sharpe The English Chief Medical Officer’s Working Parties’ report on the management of CFS/ME: Significant breakthrough or unsatisfactory compromise? Journal of Psychosomatic Research 2002:52:6:437-438.
http://www.ingentaconnect.com/content/rcop/cm/2002/00000002/00000005/art00012

“Abnormal physical signs should not be accepted as compatible with a diagnosis of CFS.”: Sharpe M, Chalder T, Wessley S et al, Chronic Fatigue Syndrome: A Practical Guide to Assessment and Management, General Hospital Psychiatry 1997:19:3:185-199.
http://www.kcl.ac.uk/content/1/c6/01/47/68/27Sharpe1997.pdf

“The term ME... may mislead patients into believing they have a serious and specific pathological process affecting their muscles and brain.”(Joint Royal Colleges Report on CFS, October 1996, UK)

They argue that we don't have a disease or medical condition, but just have a more extreme version of fatigue, similar to that experienced by stressed and overworked people in the general population.

For example Wessely and Lewis wrote:

“What is the relationship between the mild, frequent complaints of fatigue seen in the community and the severe, disabling fatigue characteristsic of CFS?

Fatigue, like many medical conditions, is best viewed as a continuum. In Geoffrey Rose's words "the real question in population studies is not 'Has he got it?' but 'How much of it has he got?"'.'
The epidemiology of fatigue: more questions than answers. Journal of Epidemiology and Community Health 1992;46:92-97
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1059513/pdf/jepicomh00209-0006.pdf

and

"The results support the concept of a continuum of fatiguability, as already suggested by data from a primary care study in the United Kingdom and a community survey in the United States. The chronic fatigue syndrome, defined only by symptoms, disability, and duration, may represent a morbid excess of fatigue rather than a discrete entity, just as high blood pressure and alcohol consumption are morbid ends of normal spectrums. Hence the definition may have arisen as a result of referral patterns to specialists."

Population based study of fatigue and social distress Pawlikowska T Chalder T Wallace P Wright DJM Wessely S BMJ 1994:308:763-766. http://www.bmj.com/cgi/content/full/308/6931/763

So ME/CFS is not really that different from the fatigue basically healthy people experience some of the time, just a bit worse. By this logic, things that apply to healthy people could also apply to us. This seems to be partly where the idea comes from that if healthy people get energy from exercise, then so can we.

 

[Orla]

We suffer from Abnormal illness beliefs

They think we have a problem with our perception or thinking. What is wrong with us is that we misinterpret normal bodily sensations as evidence of disease. We think we have symptoms of a physical illness. So we have an abnormal view that we are physically sick (they call this an "abnormal illness belief"). These abnormal beliefs lead us to abnormal/unhelpful behaviours (more of that later).

The label of CFS...avoids the misleading connotations of 'pseudo-disease' diagnoses such as chronic Epstein-Barr virus infection or ME

Chronic fatigue syndrome and occupational health A Mountstephen and M Sharpe, Occup Med 1997:47:4:217-227 http://occmed.oxfordjournals.org/cgi/content/abstract/47/4/217

"Im going to talk not about an illness, but about an idea" I will argue that ME is simply a belief, the belief that one has an illness called ME., The Victorians lived in an age of fatigue, we now live in the ME generation "there is another condition with which ME might easily be confused... it is hysteria."

people redefining themselves in terms of illness..and these views matter they affect outcome, look at these studies of prognosis..hence our virus doctor exists not to hold out hope of cure - but to give legitimacy to distress

from Simon Wessely's talk entitled Microbes, Mental Ilness, The Media and ME: The Construction of disease, at the Eliot Slater Memorial Lecture, which you can read here http://www.meactionuk.org.uk/wessely_speech_120594.htm

[Note: Psychiatrist Eliot Slater criticised the diagnois of Hysteria very strongly, and helped to put the diagnosis out of favour in the 1960s. He wrote in the BMJ in 1965: The malady of the wandering womb began as a myth, and as a myth it yet survives. But, like all unwarranted beliefs which still attract credence, it is dangerous. The diagnosis of hysteria is a disguise for ignorance and a fertile source of clinical error. It is, in fact, not only a delusion but also a snare. Quoted in http://www.richardwebster.net/freudandhysteria.html]

 

[Orla]

Belief in physical cause part of our psychopathology

So we are suffering not from a physical illness but a belief that we have a physical illness, and this is part of our psychopathology.

“Another primary care study using very similar patients found that chronic fatigue after clinically defined common viral infection was associated with the patient’s somatic attributional style (a person’s tendency to see him or herself as suffering from a physical illness)..” Royal Colleges Report 1996

“if a link exists between infection and chronic fatigue syndrome it might be as a general trigger promoting a behaviour pattern that in turn leads to CFS” Royal Colleges Report, 1996

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“Beard and Mitchell have returned to obscurity, but their disease [i.e. neurasthenia] is back with a vengeance. My local bookshop has just given “ME” (myalgic encephalomyelitis) the final seal of approval, its own shelf, a necessary manoeuvre since five books on the subject appeared in as many week, and there was no space left between meditation and menopause... all the ME books draw on immunology, virology, allergy,and AIDS where needed (which, in the case of AIDS, should be never)...A little more psychology and a little less T-cells would be welcome” .What your patients may be reading Wessely S BMJ 1989:298:1532-1533. http://www.jstor.org/pss/29704265

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“Social factors appear to play a role in CFS... Another potentially important social factor is the availability of misleading information about the illness. Both self-help books and the media have tended to emphasize 'medical' explanations for the symptoms of CFS at the expense of more psychiatric or psychological conceptualizations. Physicians may also unwittingly contribute to this process.

It has also been suggested that CFS may serve a culturally defined function of social communication, which allows a socially acceptable and hence 'nonpsychiatric' expression of distress and protest about intolerable occupational and personal pressures....
Chronic fatigue syndrome and occupational health A Mountstephen and M Sharpe, Occup Med 1997:47:4:217-227 http://occmed.oxfordjournals.org/cgi/content/abstract/47/4/217

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"Whatever their biological basis, there is strong evidence that symptoms and disability are shaped by psychological factors. Especially important are the patients’ beliefs and fears about their symptoms. Research in several functional syndromes has found that a strong belief and preoccupation that one has a “medical disease” and a helpless and passive attitude to coping is associated with persistent disability...Some persons appear to exaggerate symptoms but this is often hard to prove.

Although harder to research, social factors are almost certainly of great importance in shaping functional illness. Relevant factors include the information patients receive about the symptoms and how to cope with them. This information may be helpful or may stress the chronicity of the illness and promote helplessness. Such unhelpful information is found in “self-help” (!) books and increasingly on the Internet (see for example www.meassociation.org.uk). Unfortunately, doctors and especially “specialist private doctors” and complementary therapists may be as bad."

Functional Symptoms and Syndromes: Recent Developments. Michael Sharpe, Trends in Disability 2002, UNUM. This report can be downloaded here http://tinyurl.com/29f8wl Technically this report is about Funtional Somatic Syndromes, and not just ME/CFS, but he includes ME/CFS in this description and usesME/CFS a lot as an example in the piece.

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“CFS is dogged by unhelpful and inaccurate illness beliefs, reinforced by much ill-informed media coverage; they include fears and beliefs that CFS is caused by a persistent virus infection or immune disorder” Chronic fatigue syndrome: an update Anthony J Cleare Simon C Wessely Update 1996:14 August:61

 

[Samuel]

NEVER forget the darkness.

 

[Orla]

Indepth phsical exams can encourage the patients abnormal views

Running "too many" medical/laboratory tests on patients might encourage them in their belief that they have a biological illness. But psychiatric evaluations is often promoted for all patients.

..In most cases of chronic fatigue, few laboratory investigations are necessary. All patients should have a psychiatric history taken and their mental state examined.... The psychiatric assessment should be systematic... It is our experience that delay in diagnosis resulting in long periods off work and referral to multiple 'specialists' should be avoided as they can entrench illness behaviour Chronic fatigue syndrome and occupational health A Mountstephen and M Sharpe, Occup Med 1997:47:4:217-227 http://occmed.oxfordjournals.org/cgi/content/abstract/47/4/217


"Reports from specialist settings have shown statistically increased rates of abnormal results on tests for parameters such as antinuclear factor, immune complexes, cholesterol, immonoglobulin subsets, and so forth.... Their significance is for researchers rather than clinicians, and we feel that routine testing for such variables is more likely to result in iatrogenic harm than good. There is currently no diagnostic test or pattern of tests that can assist in the diagnosis of CFS.
Sharpe M, Chalder T, Wessley S et al, Chronic Fatigue Syndrome: A Practical Guide to Assessment and Management, General Hospital Psychiatry 1997:19:3:185-199
http://www.kcl.ac.uk/content/1/c6/01/47/68/27Sharpe1997.pdf

"Unless their are pointers in the history or examination, detailed laboratory investigation in largely unheplful in anyone with fatigue lasting more than six months.....Studies of selected samples of patients have revealed changes in some parameters, such as antinuclear factor immune complexes, cholesterol, immunoglobulin subsets and so on; these are encountered only in a minority, are rarely substantial, and do not lead to any particular form of clinical management. Their significance is for researchers rather than clinicians. There are no laboratory tests that establilsh or cofirm a diagnosis of CFS, and none should therefore be performed for that purpose Royal Colleges Report, UK, 1996.

Note: Of course if patients had evidence of physical abnormalities it would change how many were treated clinically, and would potentially alter management plans (e.g. instead of some clinicians encouraging the patiensts to ignore their symptoms, patients might be encouraged to pace themselves)

 

[gracenote]

much thanks, Orla

Thank you Orla. That is a lot of info and a lot of work for you to compile and post. I've copied them all to another file, saved them, printed them out, and will refer to them. Thank you for documenting your sources so well.

It seems that most of the cited sources are from the 90s. I would be interested in more recent documents within the last 3 or 4 years but no, I am NOT trying to give you more work!

I have no brain left for commenting on the content except to say how very, very scary this all is to read. I can't imagine living in the midst of it. Well, I sort of can, and sort of have . . . a little bit.

 

[_Kim_]

Awesome work Orla

Woah, I just sat here watching you post one, two, three, four, five BIG posts, all with such excellent commentary and citations. This is a valuable resource you've compiled. Thanks!

 

[Orla]

Hi Grace, thanks. It took me ages to get all those quotes and references up. I was going to wait until had more recent ones as well, but it was taking me so long I decided just to post up with what I had. If I get a chance I will add more recent stuff.

But if you feel like torturing yourself a little more there is a thread on Peter White's comments to NICE which has more recent stuff (reall awful stuff), and I posted a piece from a commonly used medical book there as well.

And this link as links to articles (you have to scroll down a lot to get to the articles with links): http://www.kcl.ac.uk/projects/cfs/publications.html

There is also a page for patients there but I have only read a bit of it (it is really annoying, partly because they make it sound so easy and reasonable even though their theory is flawed so their approach just won't work for us).

Edit: thanks Kim. I have been working on it for ages (I had written something shorter for elsewhere so just worked on that).

Orla

 

[Orla]

Some of them are not keen on biomedical treatments

They are sometimes not keen on biomedical drug treatments, other than sometimes anti-depressants. Their mainstay of treatment is CBT and Graded Exercise. Biomedical treatments may deflect focus from psychological management.

"The role of antidepressants remains uncertain but may be tried on a pragmatic basis basis. Other medication should be avoided. The only treatment strategies of proven efficacy are cognitive behavioral ones....

Ineffective treatments include the antiviral drug Acyclovir and anti-candida treatments. Acyclovir and anti-candida treatments. Several other therapies have gained preliminary support in clinical trials including magnesium injections, immunoglobulin infusions and fish oil. None of these agents have been convincingly demonstrated to be efficacious. Such treatments may be expensive and even harmful and distract both patient and doctor from efforts at rehabilitation, which at present appear more likely to be effective in the longer term. Patients should be discouraged from pursuing unproven treatments

Sharpe M, Chalder T, Wessley S et al, Chronic Fatigue Syndrome: A Practical Guide to Assessment and Management, General Hospital Psychiatry 1997:19:3:185-199
http://www.kcl.ac.uk/content/1/c6/01/47/68/27Sharpe1997.pdf

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"We see no role for immunoglobulins, antihistamines or other immunotherapy. There is no compelling evidence linking immune dysfunction with disability, and no convincing evidence that any agent is effective. Antiviral agents are not indicated. Experimental treatments such as immunotherapy should be given only as part of controlled clinical trials. We see no role for vitamin or dietary supplements, and are unconvinced by the efficacy of magnesium or evening primrose oil. Chronic Fatigue Syndrome: Report of a joint working group of the [UK] Royal Colleges of Physicians, Psychiatrists, and General Practitioners, October 1996]

 

[Dolphin]

Link to more recent comments by Peter White

Hi Grace, thanks. It took me ages to get all those quotes and references up. I was going to wait until had more recent ones as well, but it was taking me so long I decided just to post up with what I had. If I get a chance I will add more recent stuff.

But if you feel like torturing yourself a little more there is a thread on Peter White's comments to NICE which has more recent stuff (reall awful stuff), and I posted a piece from a commonly used medical book there as well.

That's this thread:
http://forums.aboutmecfs.org/showthread.php?t=1757
(that may be obvious now but hopefully this thread from Orla will be referred to well into the future - well done, Orla!)

 

[gracenote]

enough information for today

That's this thread:
http://forums.aboutmecfs.org/showthread.php?t=1757
(that may be obvious now but hopefully this thread from Orla will be referred to well into the future - well done, Orla!)

Thank you tomk.

I just realized you pointed me in the direction of, not a single post, but a whole thread with over 50 posts! Yikes. But I've been following that thread also and have pages of notes to follow up on. I have plenty to keep me busy for awhile. I'm learning. The most recent NICE guidelines and discussions are from 2007, is that correct? I think I'm just placing them in context now.

I will keep following whatever you and Orla post.

 

[Dolphin]

Thank you tomk.

I just realized you pointed me in the direction of, not a single post, but a whole thread with over 50 posts! Yikes. But I've been following that thread also and have pages of notes to follow up on. I have plenty to keep me busy for awhile. I'm learning. The most recent NICE guidelines and discussions are from 2007, is that correct? I think I'm just placing them in context now.

I will keep following whatever you and Orla post.

Thanks gracenote.

I should say people don't need to read all that thread to get the two main pieces:
http://forums.aboutmecfs.org/showpost.php?p=23744&postcount=1 - this has 10 points on different headings that show where Peter White is coming from, how ideologically driven he is, etc.

http://forums.aboutmecfs.org/showpost.php?p=25039&postcount=39 - the entry in the medical text.

I know the literature from the last five years quite well (although I don't tend to remember quotes as well as Orla, just lines of argument, flaws in use of or presentation of statistics, etc) so might be able to help you with other references if it is for a good cause.

 

[parvofighter]

Build it, and they will come

Thanks Orla & tomk for your magnificent efforts. I think this quote below says it all. Full awareness of areas of biomedical research. Total denial.

A little more psychology and a little less T-cells wuld be welcome[/I] .What your patients may be reading Wessely S BMJ 1989:298:1532-1533. http://www.jstor.org/pss/29704265

As samuel noted,

NEVER forget the darkness.

Orla and tomk, your postings provide outstanding leverage for the media - and us. The public NEEDS to know this. Keep building it... and they will come.

 

[Orla]

Like you say parvofighter, they are aware of at least some of the literature, but that doesn't stop them.

I'll be posting up a few other "wonderful" quotes in the next few days.

Orla

 

[Orla]

We suffer from abnormal effort perception

Abnormal effort perception: This idea seems to be that we have a problem with our idea of how much energy it takes us to do things. So we are meant to be exaggerating, imagining, or misperceiving how much more effort it takes us to do things. Basically our perception is faulty. They call this our "abnormal effort perception".

You get variations of this view. Unfortunately some people who are not of the psychchiatric view of ME/CFS also have been influenced by this view, and you see them talk about abnormal effort perception. Personally I think we ar likely not to have an abnormal perception, but that we quite correctly see things as being more effort for us, and they are more effort because of what is going on biologically (e.g. infections, low circulating blood volume etc.). Of course we also know that most of the payback happens the day after we do things, rather than when we do, which I think might undermine the view of abnormal effort perception a bit.

"CFS is a disorder of effort perception" Wessely and Sharpe 2005 in Somatoform Disorders (Volume 9), edited by Mario Maj et al.

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EDITORIAL Is the chronic fatigue syndrome best understood as a primary disturbance of the sense of effort?
________________________________________
S. M. LAWRIE , S. M. MACHALE , M. J. POWER and G. M. GOODWIN, Psychological Medicine (1997), 27:995-999 Cambridge University Press
Copyright 1997 Cambridge University Press
________________________________________
Editorial Article
http://journals.cambridge.org/actio...A7103399DCA.tomcat1?fromPage=online&aid=25497

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"chronic fatigue is primarily a disturbance of our perception of effort" (p17) Feeling Tired all the time, by Dr. Joe Fitzgibbon, 2001, Published by Newleaf

 

[Orla]

Catastrophic thinking and abnormal illness behaviour

We tend to over-worry about our symptoms and about what might make our symptoms worse, e.g. exercise, and this causes us to have totally exaggerated and irrational fears about doing normal activities. This is sometimes called "catastrophic thinking".

Our abnormal fears cause us to unnecessarily restrict our activities. (called phobic avoidance/fear avoidance) or as they claim, we engage in "abnormal illness behaviour" because of our fear of making things worse.

“Research suggests that catastrophic or dysfunctional beliefs are common in CFS and are related to disability. Such inaccurate beliefs might fuel avoidance of activity" Royal Colleges Report, 1996.

"Several studies suggest that poor outcome is associated with social, psychological and cultural factors. These include the strength of belief in a solely physical cause for symptoms, untreated psychological distress, and the use of avoidant coping strategies (such as reducing activity and/or dietary, social and other restrictions)". Royal Colleges Report UK, 1996.

“It is particularly important to be on the look out for phobic anxiety with avoidance. Patients may report ceasing certain activities such as shopping or socializing because of fatigue, but careful inquiry may reveal a possible phobic basis to such symptoms. Examples include patients who report being able to enter anxiety-provoking situations such as supermarkets only in the presence of a spouse and patients who describe marked sensitivity to noise or light (particularly if sensitive to artificial rather than natural light."

Chronic fatigue syndrome: a practical guide to assessment and management Sharpe M Chalder T Wessely S et al, General Hospital Psychiatry 1997:19:3:185-199 http://www.kcl.ac.uk/content/1/c6/01/47/68/27Sharpe1997.pdf


But, according to them, our catastrophic thinking in turn makes our symptoms worse as it causes us to restrict our activities, thus making our deconditioning worse, which in turn increases our symptoms (they think a lot of our symptoms are the result of deconditioning. I'll have more about decondioning in a later post).

"Dysfunctional cognitions are not sufficient to account for prolonged disability; their importance is linked to the development of maladaptive behavioural patterns. A vicious cycle of pain, misery, avoidance and inactivity is established" Simon Wessely, Sue Butler, Trudie Chalder and Anthony David, in Post-viral Fatigue Syndrome ed. Jenkins and Mowbray, 1991

"patients who believe in the importance of rest and the dangers of exertion, will avoid physical and mental activity, and will unwittingly deepen and prolong their fatigue. On a better day, they may undertake unaccustomed activity and thereafter succumb to post-exertional malaise (made worse because they are so out of condition). Such an experience will reinforce the catastrophic belief that exercise is harmful, and perpetuate the cycle of inactivity, post-exertional malaise, fatigue, and more inactivity. Patients with CFS therefore need to be be encouraged towards gradual increments in activity. "But I was told to listen to my body", you may say; and I reply to that, respectfully, with the empowering suggestion that you can also train your body to "listen to your mind". (p. 259) Feeling Tired all the time, by Dr. Joe Fitzgibbon, 2001, Published by Newleaf

 

[fresh_eyes]

Hi Orla. Thank you so much for what you're doing with this thread. I have to say, though, I can only read a few sentences at a time before I become too infuriated to go on! Arrrrrrgh!

Seriously, thank you, though.

 

[Orla]

Thanks fresh eyes. I know what you mean! Sometimes I am reading this stuff and I come to a particularly bad bit, and think They didn't just say that did they?

But don't worry, I'll be letting you in on the "cure" a few posts down!
Orla

 

[fresh_eyes]

But don't worry, I'll be letting you in on the "cure" a few posts down!

Please! No! I don't know if I can take it!