Tuesday, May 02, 2006

God Moves In Mysterious Ways...

...but then again so does Miss Rogers. Ah, I remember the day that the I first had the pleasure of the one and only, the unforgettable Miss Divina Rogers. I had been forewarned, of course: we doctors don't like to shit on a colleague’s doorstep without at least saying sorry. The registrar responsible for her admission had sidled up to me on the ward and confessed all. "There's one coming in today that I saw in clinic," she said hesitatingly, "who..erm...might be a bit of a challenge. Sorry." I knew the code well: for 'challenge' read 'barking mad'. When finally she made her debut entrance into the ward, she left no-one in any doubt as to the veracity of the registrar's warning.
The first thing I noticed was the fact that she appeared to be moving almost every muscle in her body simultaneously but in different directions. This lent her the air of somebody plugged into the mains, an image further strengthened by the fact she was indeed in an electric (wheel)chair. She was also wearing the most comical facial expression I have ever seen, something akin to a very shocked Cyril 'Blakey' Blake from On The Buses. Her voice can only be described as extraordinary. It's volume and tone veered up and down in such a fascinating way as to make it hard to concentrate on what she was actually saying. "Lordy," I thought to myself, "the circus has come to town."
The examination was nigh on impossible. Any attempt to get her to do anything only succeeded in exaggerating the movements until they attained a violence which would have been quite frightening, were it not so funny. The past medical history was sadly predictable: a paracetamol overdose, fybromyalgia and heavy investigation for unexplained abdominal symptoms. We did our duty all the same. She had the works: a page's worth of blood tests, an MRI, a lumbar puncture and an EEG. And surprise, surprise: there were all plum normal.
Now believe it or not, I tell you the story of Davina Rogers not as a joke (even if I do poke fun at it), but as an example of what constitutes a not insignificant proportion of any medical specialities workload - medically unexplained symptoms (MUS). The chest docs have 'atypical chest pain', the gastros have 'irritable bowel', the ENT docs get 'globus hystericus' and we, more commonly than the florid presentation above, see the 'pseudoseizures'. Yet, regardless of their differing labels, they all have at least one thing in common: there are symptoms for which no organic basis can be identified. The tests have been done - the colonoscopies, the ECG, the angiograms, the xrays, the EEGs, the CTs and whatever else might reasonably be tried - but they have all come back plumb normal. And it's there that the real problems start.
The first problem concerns what exactly to do with these patients once you have reached this stage. In many ways, doctors are like detectives: a patient presents with a certain symptom and the doctor works towards solving the mystery of the underlying causative pathology. When this mystery fails to yield an answer, however, the doctor is likely to become fatigued, dejected and might well lose interest in the case. The temptation is thus to discharge the patient from follow-up with the label of 'medically fit' and have done with them once and for all. Yet this approach fails to acknowledge that 'medically fit' people might still be in need of help, even if they have come to the wrong person in search of it. Indeed, in the case of medically unexplained symptoms, there is good evidence that if the diagnosis is made early enough and, if necessary, the patient manoeuvred towards the psychiatrists, the prognosis is good. The longer they are left to ping-pong around within the medical referral system, the less the chance of ridding them of their symptoms.

The most common misconception is that these patients are malingerers. This is incorrect from both a psychiatric and, indeed, a common-sense point of view. Malingering, by definition, aims to obtain a tangible benefit for the malingerer: the classic example being the heroin addict who feigns abdominal pain to obtain morphine. But in the case of MUS, the patient accrues no obvious benefit from their contact with medical specialists. They may even suffer harm in the form of side-effects of empirical treatments or complications of unnecessary investigations and procedures. The essence of MUS is illness behaviour in the absence of any identifiable organic disease. The absence of identifiable organic disease, however, in no way implies the suffering of patients with MUS is any less real. Unlike the malingerer who gets up and walks away once his goal is achieved or his scheming uncovered, patient with MUS are often persistently disabled, either physically or socially, by their symptoms in a way which dramatically reduces their quality of life. In the case of Miss Rogers above, she was wheelchair-bound despite the fact that no neurological need for one could be found.

One of the most difficult things is deciding how best to explain a set of normal investigations to a patient who continues to exhibit symptoms. To my mind, there are two ways of looking at it. Either, the tests are not good enough to pick up the underlying pathology; or, alternatively, there is no underlying pathology. Striking the right balance between these two ideas can be tricky though. Too much of the former and the patient goes away thinking that there must be an organic cause for their problems but it's just too complicated for us to work out yet; too much of the latter and they only hear "you're making it all up". Neither impression is likely to be helpful. You need to get the patient on your side if you are to stand any chance of having a positive impact on their life. You must help the patient come to terms with the fact the there are no more investigations to be done, whilst emphasizing that this is not equivalent to saying that we have nothing to offer in the way of help. It is essential, I think, that you frame the idea of a non-organic cause for their symptoms in such a way that allows the patient to accept this psychological framework with dignity and without loss of face. In addition, the stigma surrounding mental health issues is, alas, still powerful and efforts must be made to mitigate against this if the patient is not to understand a psychological explanation of their symptoms as an accusation of madness. With this kind of approach I usually find that patients' initial resistance to psychological interventions soon gives way to a willingness to try.

It currently falls to the psychiatrists to deal with those cases of MUS that are actually recognised as such and not just left to bounce backwards and forwards from one physician to another. We have an excellent service here at my hallowed institution, but I imagine other centres might not be so lucky. There is evidence for benefit from a whole range of treatments in MUS, from physiotherapy, through psychotropic medication (particularly SSRIs as depression often underlies MUS), all the way up to CBT and other forms of psychotherapy.
As ever in the NHS, the clinch comes in the difficulties of balancing demand and supply. The scale of the problem is mammoth. Between 5-15% of all GPs' workload is estimated to consist of MUS. Yet psychiatry is underfunded and the parapsychiatric specialities even more so. Clearly a system that is already failing to deal with the tip is never going to cope with the whole of the iceberg. The solution, of course, lies in investment and a recognition that a significant amount of money could be saved in terms of benefits, repeated appointments, and needless investigations, if MUS was recognised as such early on and treated accordingly. Somehow I doubt that will be a recognition that's made within our lifetime...


Blogger Shiny Happy Person said...

My goodness, could that be a thoughtful and sympathetic psychiatrically-orientated post from the repugnant mentalist-hater Venial Sinner?

Very nicely done. I was thinking of writing a similar entry, but I think I'll just link to yours instead.

8:18 am  
Blogger The Venial Sinner said...

Haha...it might just be. I'm actually a big fan of psychiatry, though I wish it would tidy itself up a bit medically. I think the brain in general is fascinating and so am quite attracted to the trio of neurology, psychiatry and philosophy.

We've had a lot of 'functional' patients in recently so I had been thinking about setting my thoughts down on them for a while. The catalyst was your post on personality disorders, which I suppose have a lot in common with MUS in that their is symptomatology with no underlying physical correlate.

Hope it wasn't to rambling, anyway.

9:12 am  
Blogger Shiny Happy Person said...

I find them fascinating, and quite possibly the most challenges people to work with. I actually want to be a liaison psychiatrist, which would involve a lot of involvement with people with MUS, conversion reactions etc. When I was a surgical house officer, my consultant and reg would always refer to the patients with MUS as "SHP's patient" because I was the only one on the team with any interest in dealing with them. Saw some incredible cases. I think, as you say, an enormous problem is the confusion people have between malingerers and people with MUS, and they end up all being treated the same.

6:16 pm  
Blogger Dazed & Confused said...

ok who are you and where is the real venial sinner?

i hope our beloved hospital isn't breaking you.

reading your post reminded me about the guy that was on here a few months back. do you remember? the pink psychiatrist got caned by him. spinal MRIs and things. what happened to him?

6:59 pm  
Blogger The Venial Sinner said...

Herr D&C, that man was horrendously orally and anally raped and the fact that you could even evoke his divine being in common conversation without admiting to the guilt of the whole of the medical services shows that you are just another cog in a machine designed to chew up the vulnerable and discredit the victimised.

So there.

(pint next week?)

8:14 pm  
Anonymous psychedelicious said...

I should admit that this is one of the most poignant illustrations on MUS I ever read.
I wish there were more of you in every speciality. Without pausing for breath I also wish there were more psychiatrists who take an active interest in clinical medicine. I hate to see people in 'mainstream' medicine who "dont know, mental health prob, ref to psychs" as much as I despise psychs who dont take the effort to do a detailed physical examination in mentally ill pts.
I think with your interest in Neurology, Psychiatry & Philosophy, you would be an asset to Psychiatry....any chance you could be persuaded to move camp?!!
Keep blogging, sinner.

9:04 pm  
Blogger Dazed & Confused said...

that's the fella. link his blog again if you remember. i'm quite keen to find out what happened to him.

actually tell me when you see me because you might get lambasted again.

pint is definitely on the cards.

cog till i die (that's actually not even a joke the more i think of it)

9:34 pm  
Blogger The Venial Sinner said...

SHP & Psychedelicious - My flatmate is also a budding liason psychiatrist. I think the reason the surgeons and to a lesser extent the medics have such a hard time dealing with MUS stems from their focus on 'disease' rather 'illness'. Whilst the former term is quite rightly restricted to organic pathology, the latter is much broader in its scope, encompassing the person's physical, mental and spiritual status. It is certainly true that disease may cause illness (though this is not always the case), but it is not true that all illness is caused by disease. A shift in focus from disease to illness would produce a more holistic framework in which problems like MUS could be more easily tackled.

As for me, neurology is hopefully where I'll end up, but I did think seriously about psychiatry for a while.

D&C - yes, I think it would be wiser not to link back to him The Pink Psychiatrist got his fingers burnt on that one! You could go back though the comments he left on NHS Blog Doctor if you really wanted to find him.

4:12 pm  
Anonymous LiliAnn said...

First of all, thank you for that wonderful story. I would like to share something.

I have found a way to talk to patients with pseudoseizures that has been particularly helpful in the mission for acceptance of psychiatric help.

Patients with pseudoseizures are absolutely convinced that they have epileptic seizures, and they often feel particularly "wronged" when they find themselves in front of a psychiatrist, of all people!

One patient asked me quite tearfully, "do you think I'm crazy?" She also wanted to know, "does my neurologist think I'm crazy?"

The answer is summarily NO. She is not crazy, and no one thinks that is the case. I reassured her that she is indeed having some sort of episode that affects her life greatly. The patient with pseudoseizures needs her episodes and her suffering to be validated, in order for her prognosis to be good.

My next comment to such a patient will be, "I have no doubt that you are suffering physically, and that you are indeed having some sort of pathological activity in your brain. Luckily it is not epilepsy, so we have a good chance of helping you get much better."

This method has never failed to sway the psychiatrically reluctant patient to accept my help.

10:20 pm  
Blogger The Venial Sinner said...

We try a similar tactic: "The good news is the EEG has shown that the episodes you have been having are not epileptic, which means there's a good chance they can be much improved without anti-epileptic medications and all their unpleasent side-effects...".

Medicine: it's all about communication.

11:24 am  
Blogger Dr John Crippen said...

Fascinating subject.

I am not sure that MUS means the punter should see a psychiatrist. Some should, for sure. Most not, I think. Most MUS punters bounce around the NHS in Balint's collusion of anonymity. I like to think that if the GP is good, they will not be referred too often.

Are we arrogant to think that because the Sx are MUS that they therefore are not real.

You know that I did a post or two on ME and it attracted hundreds of comments. I do not believe in ME. It is the archetypal MUS.

I still believe that punter who insist on a diagnosis of ME need psychological help more than physical.

But blogging it has changed my views. I am now certain that there are a group of patients out their who are NOT psychiatrically ill in any way, who DO have utterly debillitating MUS and who are not being helped by the medical profession i.e. us.

So what do we do?

It is variably estimated that 10 15% of patients labelled as malingerers later turn out to have identifiable medical problems, usually of neurological origin.


12:41 am  
Anonymous Lily said...

Venial Sinner:

Amen!! After all, physician = teacher.

Dr. Crippen:

Exactly my point! The symptoms are very much real, as if they WERE able to be defined medically. Sometimes the symptoms can be found medically but because of error or omission (by the patient or doc) the explanation simply cannot be found.

Case in point: I had a patient in the psych ER one night who was suicidal because of extreme discomfort that could not be explained medically. I took a very detailed history and did the physical exam. However, a review of his meds revealed the cause right away, which may not have been obvious to his GP. He had akathisia, which we successfully treated with a beta-blocker.

9:23 am  
Blogger Dr John Crippen said...

VS, you said:

"Case in point: I had a patient in the psych ER one night who was suicidal because of extreme discomfort that could not be explained medically. I took a very detailed history and did the physical exam. However, a review of his meds revealed the cause right away, which may not have been obvious to his GP. He had akathisia, which we successfully treated with a beta-blocker."

Good pick up.

Two questions:

1. Do you think the nurse specialist would have picked this up?

2. What hospital do you work at? I need to know. It sounds very unusual. Are you in a time warp? What is this about DOCTORS seeing psychiatric emegencies? I want to send my patients there.


10:41 am  
Blogger The Venial Sinner said...

I must say I do agree. I doubt there is anything physical in CFS and its other moniker, myalgic encephalomyelitis, is patently ridiculous since it implies an inflammation of the CNS which is simply not there.

I don't think all people with MUS need to see the shrinks but I certainly think those with debilitating symptoms should. They are the people with access to the behavioural psychotherapies, which are probably the most effect intervention. Plus, in severe cases, it's always worth getting an opinion on the possibility of an underlying or at least concomitant psychiatric disorder.

Your last point is interesting. Medicine is never exact and there is always the possibility that we will miss something. The nice thing about MUS as a 'diagnosis' - as opposed to malingerer - is that it merely states that we CAN FIND NO medical cause for your symptoms and not that there ISN'T ONE. The name of the game then becomes symptom control, which is, I think, very reasonable.

I think malingerer is abused as term and it's a dangerous one to throw around. Unless there is clear evidence of patient obtaining a tangible benefit by pretending to be ill, then I think it's one best avoided.

Finally, it was Lilly's case in point so I'll leave your questions to her. I will point out, however, that it depends completely on where you are as to who sees the psychiatric emergencies. At the hospital I'm at now it's the doctors, at my previous it was the specialist nurses and at the Pink Psychiatrist's it is currently the doctors but will soon be the nurses!

3:32 pm  
Anonymous Lily said...

Dr. Crippen:

Thanks! Would the nurse specialist have noticed this? Somehow I don't think so. This particular fellow, since he was in such an agitated state, wasn't expressing himself very well. It was his really his behavior that tipped it off.

I know of psychiatrists who don't look hard enough for akathisia. I think often it is passed off as anxiety, and treated with benzos, depending on the patient's substance use history.

As for the doctors seeing the psych emergencies, it does depend on where you are, and who you practice with. Some of the local psychiatrists allow the nurses to handle most of it, and then simply make a call for approval.

The group I work with, however, insists that a physician do the entire work-up. We also have an agreement with the other psychiatrists in the community: by one of us being physically present in the psych ER, we also handle their patients who get too rowdy, for them in their absence.

I also believe that a diagosis of malingering is a terrible label to stamp someone with. If I suspect malingering but cannot prove it, I will make some reference to the behaviors that led me to think that way in my dictation, but leave it off the diagnosis.

5:20 am  
Anonymous Anonymous said...

Lies and the liars who tell them: http://spaces.msn.com/abeiradovermilion/

11:33 pm  
Anonymous Anonymous said...

Conversion reaction? Has no-one told you Freud is DEAD???

Venial SInner- please take the time to look up the CFS study out of the States that was all over the place last month. Please. There are genetic differences, now documented, that account for the symptoms of CFS. Please.

My mom has fibromyalgia. It hit her after a heart infection. Thankfully she has always been a stay at home mom, so she was able to arrange her life to accomodate her illness. It has changed her activity level to the nth degree. I have a feeling that you would discount this. There is no secondary gain, there is no more attention, and she still has kids at home, so there is still responsibility. What on earth would be her payoff for having to nap daily and be in pain constantly? And it is not like she complains. Usually IF I think to ask it is once in a blue moon.

I really dislike psychology and psychiatry because it is such an opinion laden field. The brain runs on chemicals. There are reasons for things- they just may, as yet, be completely unexplained.

12:31 am  
Anonymous Anonymous said...

Dazed and Confused - have a look at Venial Sinner's post and comments for January the 6th.

10:28 am  
Anonymous Anonymous said...

I am curious about if you think that ALL MUSs are psychiatric in origin? If not, what of the patient who jumps through the hoops of (sometimes multiple) psych and is found to be clear there too.

Is it arrogant to assume that medical tests can detect all medical problems?


2:14 pm  
Anonymous Anonymous said...

From my patient's POV, one problem seems to be that we expect that if the doctor can't make a diagnosis, he/she will then investigate further, and do research. So it's a shock to us when the doctor, unable to make a diagnosis, seemingly just gives up and loses interest.

You also say you doubt there is anything physical in CFS - what do you do when you see a CFS patient who has read many papers saying that there is indeed something physical going on in CFS?


6:59 pm  
Blogger The Venial Sinner said...

Has anybody actually read the post before they decided to comment!?

Anonymous No 1: Freud is indeed dead but that has bugger all to do with conversion disorder's existence, which is part of DSM-IV (300.11 if you'd like to look it up).

Secondly, the very point of my post was that in MUS "the patient accrues no obvious benefit from their contact with medical specialists...The essence of MUS is illness behaviour in the absence of any identifiable organic disease. The absence of identifiable organic disease, however, in no way implies the suffering of patients with MUS is any less real. Unlike the malingerer who gets up and walks away once his goal is achieved or his scheming uncovered, patients with MUS are often persistently disabled, either physically or socially, by their symptoms in a way which dramatically reduces their quality of life."

Despite the rather clear distinction above you still say I would discount her as a malingerer. I think it has been you that has been a bit too quick off the mark to judge, m'dear!

Anonymous 3 (R): Once again I quote myself regarding normal investigations- "either, the tests are not good enough to pick up the underlying pathology; or, alternatively, there is no underlying pathology. Striking the right balance between these two ideas can be tricky though.". You see, what you have to realise is that if the tests are normal then we don't know what's going on and hence we can't help with medications or surgery (though foolish and often under pressure we still sometimes try). People must then learn to live and deal with their symptoms and behavioural psychotherapy can useful in that context whether there is an actual underlying but undetectable organic problem or not.

Anonymous 4 (K): I'll come back to you in a second, I just have to check out what anonymous 3 is going on about.

You know it would be helpful if you all just made up joke names so I could tell you all apart!

7:18 pm  
Blogger The Venial Sinner said...

Right, anonymous No. 4: Yes, I completely agree with your first comment. Their is massive patient resistence to the idea that there may not actually be any detectable organic pathology underlying their symptoms, as is evidenced by some of the comments above. However, it is too easy to use that attitude as an excuse to collude with the patient in a kind of reciprocally-face-saving 'folie-a-deux' centred around the idea that endless and ever more invasive investigations will eventually find this occult pathology. Most probably they will not.

It is our job as health professionals to maximise a patient's health in line with the available evidence. The evidence does not support open-ended investigation and continuous rereferal; it states that in medically unexplained symptoms early psychological (particularly behaviourally based) techniques that teach the patient to cope and adapt are much more likely to benefit them in regaining some functional normality. In pandering to the patient's need for a 'proper' physical cause, we run the risk of doing them more harm in the long run when the abnormal illness behaviour becomes well and truely established and, hence, insurmountable.

As for CFS, I say simply this: there is, as I understand it, some limited evidence for possible immune dysfunction in CFS, but it is often contradictory and weak. There is just as much if not more evidence supporting a likely psychological basis. In sum, we do not know the cause of it, and so we end right back where we were in the paragraph above: we either investigate perpetually and do nothing or try to implement a psychological strategy that aims to maximise the patient's functionality. You choose.

7:42 pm  
Anonymous Anonymous said...

I should have said, I am that CFS patient!

So think of this as an advance preparation. When you see a CFS patient, and he says "Doctor, I have read about all these physical abnormalities, how can this be a psychological illness?", and he goes on to list these, and many others:-

Why is there reduced hypoperfusion in the brain, which is made worse by exercise?
Why is there 10% loss of brain volume? That sounds very bad.
What about the results from Jonathan Kerr's work on gene expression?
Why are the only people with high levels of low molecular weight Rnase-l, the people with CFS and people with Multiple Sclerosis during flare-ups?
Why don't people with CFS have enough blood volume?
Why do parts of the brain shut down according to Japanese MRI study?

He might have a printout from the ME research charity MERGE, listing the various things they have found.

He may well have also brought with him a printout of the Canadian Guidelines for ME/CFS, which are extremely critical of the British psychiatrists who "ignore the documented pathophysiology of ME/CFS" - available here - http://www.mefmaction.net/documents/me_overview.pdf

He will, not surprisingly, want to know, why do the Canadians have such a different opinion?

If you truly believe there is nothing physical going on, then for the sake of your patients, please find a way to explain why these doctors and researchers are wrong when they say they have evidence that it is a physical problem. I do not care if it is physical or mental, I just want the truth, I just want to get better.

"There is considerable evidence from different investigators, using different technologies and studying different groups of patients, of a state of chronic immune activation. In summary, there is now considerable evidence of an underlying biological process in most (CFS) patients (which) is inconsistent with the hypothesis that (the syndrome) involves symptoms that are only imagined or amplified because of underlying psychiatric distress. It is time to put that hypothesis to rest."
so says Anthony L Komaroff,
Assistant Professor of Medicine at Harvard


7:56 pm  
Anonymous Anonymous said...

The Venial Sinner - hey, you replied too quick! I was still typing out my second post, and you replied in between!

You wrote:- "We either investigate perpetually and do nothing or try to implement a psychological strategy that aims to maximise the patient's functionality. You choose."

I see where you're coming from. The main objection to this for a CFS patient in particular, is that the psychological strategy often seems to contain a component of exercise. There is both anecdotal and research evidence that exercise can be a terrible, harmful thing for CFS patients.

OK, I'll post this quick so we don't cross post again.

K (still no amusing name, sorry..)

8:03 pm  
Blogger The Venial Sinner said...

My response to any clinical evidence for a syndrome whose inclusion criteria are so vague is always going to be guarded. There are numerous problems with many of the studies (low power, poor design, differing inclusion criteria) that means their conclusions must be viewed with caution. That's not to say that I don't believe that some of these things will indeed turn out to be relatively reproducible physical findings in patients with CFS. I'm sure they will, but that something quite different from saying the cause of CFS is therefore physical as well. Consider anorexia nervosa for instance: there is often widespread endocrine dysfunction, orthostatic hypotension, parotid hypertrophy and excess energy, but few would dispute that anorexia has a psychological/psychiatric underpinning.

However, if evidence is what you like, then let me ask you how you would explain these findings, quoted from a 2006 review in the Lancet:

"“Psychological processes seem to be involved in the perpetuation of complaints in patients with CFS. These processes involve ideas or cognitions of patients about complaints and behavioural factors such as persistent avoidance of activities associated with an increase in symptoms. A strong belief in a physical cause of the illness, a strong focus on bodily sensations, and a poor sense of control over complaints contribute to an increase in fatigue severity and functional impairment.37,60–62 In a study of monozygotic twins discordant for CFS, the affected twins used more avoidance strategies than their nonfatigued co-twins.63 Inactivity of patients with CFS is caused by perceptions and expectations rather than by physical fitness.64,65 In CFS, discrepancies between perceived and actual cognitive performance have been found.66–68 A similar perception problem has been found for sleep disturbance.69–71 Twin studies have contributed particularly to evidence on the difference between perception and actual functioning of patients with CFS. Other perpetuating CFS factors that have been identified are social processes ranging from solicitous behaviour72 to lack of social support.73 Illness perceptions and illness behaviour can be reinforced by people in the patient’s environment, such as a partner or family.74–76 Practitioners can contribute to the persistence of CFS by continuously encouraging unnecessary medical diagnostic procedures.77,78 Apart from the many disadvantages, long-lasting illness can also have more desirable consequences, such as care, attention, disengagement, or even financial benefits, which might also be considered perpetuating factors.72,79"

10:50 pm  
Anonymous Lily said...

Venial Sinner:

In the US, the opinion of the medical community about CFS/FMS is beginning to change. I know of a rheumatologist who trained in Sweden (or was it Switzerland?), who does a lot of research, which has not yet been published, who thinks CFS/FMS is a bonafide neurological condition. His idea is that the afflicted patient's sensory nerves have somehow become sensitized to stimuli, such that what would not be painful to another, non-afflicted, individual may actually be extremely painful to one with CFS/FMS.

Anyway, like "K," I say "who cares?" What does it matter what we call it as long as we can treat it somehow, and in a way that is evidence-based, such as with antidepressants--the SSRIs and some of the TCAs?


2:28 am  
Anonymous Lily said...

Forgot to mention something:

My own idea is that somehow the gating theory of pain transmission has something to do with this.

2:30 am  
Anonymous Anonymous said...

The Venial Sinner - thanks for reply. There is a lot I intend to say in reply to that quote from the Lancet, but it will take me a while to write, but I will get it written and posted here eventually. (I have to go out tomorrow, which may take me a week to recover from.)

I would just like to ask, how much of the physical problems in anorexia come from the lack of food? Also, what do you make of post polio syndrome?


8:38 am  
Blogger The Venial Sinner said...

I would presume that almost all of the physical problems in anorexia are due to lack of food. Depression, however, may cause neuroendocrine upset.

As for post-polio syndrome, there would seem to be original damage to the motor neurones in the first instance of the disease that causes some of them to die off. The remaining axons then branch to form larger 'motor units'. This, however, puts them under increased stress, which is presumed to lead to oxidative damage and further axonal death at a time well after the initial illness. This leads to increased weakness and muscle wasting.

Unlike CFS, there is demonstrable axonal die-off on EMG to account for the weakness and fatigue. In CFS, the nerves and muscles appear intact and undamaged.

5:53 pm  
Anonymous difficult patient said...

Some of these patients could be helped by starting with a thorough screening for domestic abuse . . .seriously.

3:09 pm  
Anonymous Anonymous said...

"Anonymous 3" here again. If you would like a name, I guess that "R" goes well with "Rudolph the Red Nosed Reindeer" :)

Anyway, thanks for the re-statement, and apologies for missing that bit - my bad.

I totally agree that behavioural psych intervention aimed at maximising functioning and quality of life is helpful for any chronic symptoms - medically explained or not.

The problems I encountered myself were being referred to psych for MUSs, and said psych spending an inordinate amount of time trying to dig through me for some reason for my "conversion disorder" ... which eventually turned out to be a rare genetic disorder.

I realise that this is not the type of psych intervention you wrote about, but I just wanted to explain my knee-jerk reaction to my mis-reading of your point.

I guess that if I had a point, it would be to remind everybody of the illogic of thinking that absence of evidence is evidence of absence.

Thanks again. I find your posts invariably interesting.

Rudolph ;)

4:17 am  
Blogger The Venial Sinner said...

Ta, Rudolph.

I used to have a consultant whose favorite aphorism was "no evidence is no evidence at all".

4:17 pm  
Blogger Prue said...

To A Difficult Patient:

Domestic abuse is a horrid, horrid problem that must be investigated ad infinitum. I have worked with many victims of abuse (having been one myself), and you are absolutely correct.

The abuse victim could have lots of unexplainable symptoms, especially if the victim is an adolescent. In medical school I was taught that the physical symptoms originate with the abuse itself, and linger on because of the mental association of psychological pain with that physical pain.

For example, if one were punched in the abdomen, the lingering somatic symptoms might be chronic diarrhea or chronic nausea. If one were kicked in the shin, the lingering somatic symptoms could be weakness of the limb or chronic pain.

The so-called somatoform illnesses are really very fascinating. I'm so glad Difficult Patient reminded of us about checking for abuse.

10:15 pm  
Anonymous Anonymous said...


Sorry it's been a while. When you first posted that quote from the Lancet, I was able to find the full length thing. Now I'm back to respond, and I can't find it!

However I did note that many of the references were to studies by Simon Wessely.
About halfway down this page you will find some criticisms of Wessely's methods in studying GWI.
IIRC, similar criticisms have been made of his approach to studying CFS.

As for beliefs about illness causing illness, a quote from here
"state my incredulity that researchers can miss the obvious backward connection that long-term sufferers of life-shattering conditions might look for organic agents in their illness, giving that thinking therapies and anti-depressants have failed them; and thus that research will indeed show that believing you have an organic illness predicts long-term illness, because you are actually physically ill!"

Physically ill people have been known to believe that they are physically ill!

Interesting diagrams here:-

I suppose you would say that the outbreaks of ME are due to hysteria, not a virus?


8:04 am  
Anonymous Anonymous said...


About the ME/CFS patients' distrust of CBT. We've heard about the way the CBT trials were done. They sound like they used very flawed methods. So how can we have any faith in the results?

Here are some examples of why CFS people don't trust the CBT trials.

They used a very broad definition which selected a heterogenous population. (I also seem to recall reading of a trial that excluded those with sleep disorders, which is 80% of people with ME/CFS!)

They only focused on the one symptom of "fatigue."

The trials had many drop outs - and they didn't count them. So if you started with 100, and 80 dropped out, and of the remaining 20 who completed the course, 10 got better, you call that a 50% success rate?

The trials were done on those patients well enough to get to the clinics - excluding the severely affected.

There are various other criticisms too, but that should give you an idea.

We've also all seen in the news the news about the white blood cells behaving differently, gene expression etc. Or the several reports of the abnormalities and/or viral infections found in spinal fluid. e.g. http://www.hhv-6foundation.org/febpressrelease.pdfSo it's really hard for us to believe that it is a primarily psychological condition.

If the physical problems in anorexia are from lack of food, what's causing all the physical problems in ME/CFS? Because we do eat. And we do move around within our capabilities (I say this because there appears to be a myth that we all take ourselves off for total bed rest and inactivity.)

You talked about motor neurones, motor units etc. There have actually been a couple of studies of this in ME/CFS which showed abnormalities. EMGs and one sural nerve biopsy. If you want more detail on that, do let me know.


1:34 pm  
Blogger The Venial Sinner said...

K, m'darling, I have to be honest: science is science and, if you look hard enough for it, 'evidence' can always be found to back any viewpoint you might wish to hold. If you think the world is flat, there's probably a study to show that it's so.

CFS is too board a clinical enitity to be anything but a medical chimera. CFS was invented by the people, for the people and it is, in my opinion, destined to remain forever that: nothing but a fabulous invention.

3:39 am  
Anonymous Anonymous said...

Hi Venial Sinner,

Regarding the term CFS, the "fabulous invention".

There is some information here of an inquest earlier this week into the death of a young woman with CFS. If this had been detected before she died, what would it have been called? Just "dorsal root ganglionitis"? Or would it still have been called CFS?


BTW, "CFS was invented by the people"? It appears CFS was invented by the CDC, not by the people.


3:42 pm  

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