Psychiatric Peregrinations

Over the last couple years in which I’ve made any consistent effort to participate on M.E/CFS related forums, I’ve often been criticised by other posters because my own criticism doesn’t (at least with an approved of frequency) encompass psychiatry. To be criticised for not criticising something that many other people are expending considerable energy on criticising , when no one who could conceivably be capable of making a meaningful response to such criticism is engage in the discussion, always seemed a bit nuts to me. If one is going to argue about psychiatry actually doing so in a forum that might engage the knowledgeable and usefully influence-able seems a far better option to me. The Science Based Medicine forums appear to fit the bill.
SBM is a critique of Evidence Based Medicine, which does not reject EBM wholesale but places established scientific principles more firmly in the process of treatment intervention. Axiomatically psychiatry is placed under rigorous test by the SBM approach: Psychiatry-Bashing

Recently one of the leading proponents of SBM – Steve Novella wrote an article about the Lipkin study: XMRV Chronic Fatigue Syndrome Update the comments section of which led to some (IMO at least) interesting exchanges about the role and function of psychiatry in relation to M.E/CFS – I’ve edited (for purposes of readability only) some of my own contributions, together with posts from others that prompted my replies. For those with the stamina, the full comments list is worth reading but beware the presence of probable below bridge dweller.

Psychiatric Peregrinations in the aftermath of XMRV

Poster: SkepticalHealth: “What is the science that precludes CFS from being a mental health disease? We can’t do a blood test for depression, and we certainly don’t blame depression on a virus, or on some other disease process. Why would you think CFS would be any different?”

IVI reply to SkepticalHealth: Your logic escapes me. Perhaps the following will be of help to your understanding:

1. Immunological responses are indeed implicated in depression associated with acute infective illness. Treatment of depression in such cases is achieved by treatment of the infection, usually without recourse to antidepressants, but immune boosting can of itself necessitate treatment

2. M.E/CFS is recognised by many of those who have researched the condition as being heterogeneous ( Lipkin comments as does I think Harvey Alter ) – that is there is not one single aetiology, but a variety of processes producing common symptom sets. It would be foolish to conclude that psychiatric contribution to aetiology could be excluded in all cases, equally if there is heterogeneity – psychiatric contribution to aetiology is unlikely to be present in all cases.

3. What is the science of psychiatry ? Outside neuro-chemistry, neuro-surgery and (less certainly) behavioural psychology – the scientific base of psychiatry is profoundly wanting. To take as a default an ascription to psychiatric illness, in all conditions of unexplained aetiology is (from an SBM perspective) perverse. The starting point logically must be known science and work from there, to date psychiatric involvement in the generality of M.E/CFS has been shown as a negative association , ,

4. Psychiatric intervention in M.E/CFS performs abysmally, with treatment deliverers in one trial responding to its failure, bleating that GPs had supplied patients who did not share the philosophical precepts of the treatment regime. I believe something similar is said by homeopaths.

evilrobotxoxo:The CFS community was really excited about the possibility that CFS might be caused by a virus in part because that would supposedly mean it’s not psychiatric.”

IVI reply to evilrobotxoxo: The identification of a single ‘CFS commuity’ is unhelpful to say the least. Many of us were highly sceptical about not only the Lombardi research, but the Institution that produced it (WPI) and the very notion of a single causative pathogen, not to mention the very disturbing associations that were made by both Mikovits and Annette Whittmore of the WPI, with a whole raft of wooist thinking.

M.E/CFS affected people (sufferers, their carers and families) inevitably look for confirmation of physical causation, and the disinterest of non psychiatric medical and research specialisms has led to a significant number of M.E/CFS affected people either embracing anti science or at least partialist science perspectives. This represents a significant faultline which itself precludes any monolithic notion of a CFS community, there are however other factors which also militate against the existence of one single illness focussed community – not least the age range of affected people. For what it’s worth my documentation and observation of the XMRV/CFS saga, from what I hope is a sceptical perspective can be found here:

Valya: “ There’s a reason some CFS patients object so strenuously to the possibility that CFS is a psychiatric problem, to many, a psychiatric diagnosis means one doesn’t have a “real” disease.

IVI reply to Valya: It couldn’t possibly be because all the personal experience of the symptoms of the illness are physical and that therefore (whatever the aetiology actually is) the patient has a wholly physical experience that seems to them utterly removed from anything that could be psychiatric. Blaming the patient for the nature of their experience and setting that blame in the context of societal misperceptions of psychiatric illness is somewhat perverse, don’t you think ? If M.E/CFS truly were a single discrete psychiatric illness, then it would be one of profound delusion, and given the epidemiological evidence that would make it the most common psychotic condition. To date that circumstance seems generally unrecognised – probablly because it doesn’t exist.

Scott: “Suggesting that a particular illness may be psychiatric in nature does not in any way constitute “blaming the patient for the nature of their experience.” And nobody’s suggesting that it’s necessarily a single clearly delineated condition – certainly not that it represents profound delusion!”

IVI reply to Scott: Valya’s point was that M.E/CFS patients are resistant to a psychiatric diagnosis because of a perception of psychiatric illness – and the implication appeared to be that a) such resistance was misplaced and b) was contributory to the maintenance of a general misperception of psychiatric illness. No where did Valya acknowledge that the reason M.E/CFS patients are resistant to a psychiatric diagnosis, has nothing to do with their personal or societal judgement about being ‘mentally ill’ – but the sheer bloody simple fact that all their symptoms are physical !!

If we take Valya’s (apparent) contention that M.E/CFS patients are ‘in denial’ and that such denial is contributory to a maintenance of of a misperception (whether personal or societal) of psychiatric illness – that axiomatically leads to blaming the patient. Which is presumably why SH was approving of Valya’s post.

And yes I know there is a determined avoidance of classing M.E/CFS as a delusional condition. But my point is, that is a dishonesty on the part of those contending M.E/CFS is a psychiatric condition: If M.E/CFS is experienced by patients as wholly physical ( overwhelming fatigue, malaise following activity, persistent muscle and joint pain, nausea, disautonia, photosensitivity, persistent headache etc) and the contention is that none of these symptoms have a physical reality, then one is left with the symptoms as being delusional; excepting that there is some arcane explanation regarding behavioural maintenance of real symptoms. To date there is no evidence that behavioural maintenance is involved and all cognitive interventions have produced abysmal results. Those who favour a psychiatric label should honestly follow their predilection and acknowledge that (in their terms, not patients) M.E/CFS is a major delusional illness. This of course is studiously avoided by those favouring the psychiatric label and recourse is consistently made to the highly dubious ‘functional’ classification which is of immense appeal to those arguing from SH’s perspective because it implies a significant element of patient responsibility via ‘illness maintenance behaviours’ and illegitimate thinking.

How such ‘judgemental’ processes work to ‘blame patients’ can be seen in– note the sentence ” If patients hold a clearly incompatible model of their illness, it is unlikely that they will engage with, and successfully complete, therapy.” – a proposition that would be entirely expected within the most corrupt quack medicine. I would suggest that if M.E/CFS patients needed anything beyond their own somatic experience to dissuade them of the validity of psychiatric intervention in M.E/CFS is the Orwellian notion of an “incompatible model of their illness”.

Scott: “Psychiatric disorders can produce physical symptoms without being delusional. IMO your reaction is precisely what Valya was talking about. And certainly there was no contention that anyone is “in denial” – explicit or implicit.”

IVI reply to Scott: So my criticism of one small part of psychiatric practice equates to a derrogation of the validity of the whole of mental ill health ? Your logic is that I must accept your preferred (and SH’s !) labelling of an illness, or otherwise I’m contributing to the denigration of mental illness per se. You might guess I’m not attracted to your proposition. As for (I feel you couldn’t quite bring yourself to say it ) shh ! S-o-m-a-t-o-f-o-r-m Disorder, yes brilliant, critique the proposition of a non psychiatric aetiology for M.E/CFS on the basis of a psychiatric construct that has absolutely zero identified pathophysiology. Somatoform and Functional disorders are precisely where psychiatry hits the buffers of prior plausibility, these are constructs which have their roots in the non science of Freudianism and Jungianism and they only exist as authoritative expositions of ‘experts’ who can provide no meaningful tests of their own pronouncements.

To characterise M.E/CFS as a delusional disorder would clearly demonstrate the unsupportability of an exclusive psychiatric definition of M.E/CFS, but there is no less reason to describe M.E/CFS as delusional than there is to characterise it as Somatoform or Functional. The difference is that (so long as the patient is without the defence of a definitive organic process of illness) , Somatoform and Functional provide ill defined labelling into which anything ill health can be squeezed, with the employment of strong approbational conditionality such as ‘catastrophising’, ‘activity avoidance’ and ‘sick role’.

For the record, just so there’s no further playing of the – ‘you hate mental illness’ card. I consider a mental health specialism to be one of the key elements of a comprehensive health service and the denigration of (for want of a better term) psychiatric illnesses is obnoxious and should be abjured. Equally I want to see psychiatry meet all reasonable tests that might be demanded by an SBM philosophy – IMO constructions like Somatoform and Functional do not come anywhere near meeting such tests.

evilrobotxoxo reply to IVI: I think you have a bit of a misconception about what the term “delusion” means. I’m a psychiatrist, and we have precise definitions of what these words mean, and there is virtually no circumstance under which it would apply to something like CFS, regardless of etiology. To explain (to everyone, not just you), a delusion is a false belief that persists in the face of contrary evidence (or at minimum is not based on any logical evidence or culturally-held ideas). Importantly, the term “delusion” applies to beliefs, not experiences. If the patient experiences physical symptoms, then those symptoms are not delusional, even if they do not have a cause that we can currently identify. For example, a conversion disorder (in the somatoform category) would be a person whose arm becomes paralyzed, even though MRI and neuro exam show that there is no obvious lesion. A delusion would if someone continues to believe that their arm is paralyzed in spite of evidence that it is not (i.e. you can see them moving it). There’s a big difference between those two things.

A second point: to some extent, you’re combining malingering (faking symptoms for logical reasons like getting painkillers), factitious (faking symptoms to be in the “sick role,”), and somatoform (not faking symptoms) disorders into one category. Admittedly, these things are on a continuum, but it’s also worth pointing out that depression and anxiety (which are not even on that continuum) frequently cause physical symptoms, and those are often the primary symptoms. I concede your point that the whole concept of conversion disorder is based on an old Freudian idea of “hysteria,” but the thing with conversion disorders is, patients get them. Not even all that infrequently. In some cases, they can also be demonstrated objectively (e.g. unilateral conversion paralysis has abnormal peripheral nerve evoked potentials in response to transcranial magnetic stimulation of the contralateral motor cortex). So I don’t know what prior plausibility has to do with it.

In summary: we don’t know the etiology of CFS, but the fact that the subjective symptoms are not what patients classically associate with psychiatric disorders does not mean that it’s not psychiatric, or that the patients are delusional. For the record, I’m not saying that it is psychiatric. I have no idea. Like many clinicians, I’m skeptical of the idea that CFS even represents a single disease entity. I think it’s pretty clear that some people who are given the CFS (?mis)-diagnosis have a recognized psychiatric diagnosis with primarily somatic manifestations, but I have no idea what percentage of the CFS population that is.

IVI reply to evilrobotxoxo: I fully accept that in psychiatric practice, delusion is differentiated from other categorisations on the basis that for a formal diagnosis of delusion to be given, the deductive basis of that diagnosis must be demonstrable to the patient as a challenge to the patient’s perception. However this is a semantic (pejorative not implied) position not a scientific one, indeed your whole presentation of the issue appears to involve a labelling fallacy. Even the area of research you cite appears to routinely pre label subjects as suffering from ‘conversion disorder’, merely on the basis of “absence of evidence = absence”; thus the research justifies the category, rather than challenging it. Incredibly we still see “hysteria” being referenced in such research while the potentiality of viral impact on neurological function is discounted out of hand – et al. NIMG2009.pdf

To contend that: “delusion” applies to beliefs, not experiences, is to create a duality that is not consistently prenet in psychiatric practice. The belief in a phantom limb is based upon the ‘experience’ of an amputee, and that experience which may include ‘pain’ in the removed limb. That experience of pain can not be demonstrated as being more or less real in the case of an amputee than it can in the case of someone who complains of pain in a limb which is still intact but where medicine can currently identify no causal source of the complained of pain. It is merely that in one case psychiatrists have recourse to an objective reference – the absence of a limb –while in the other they do not, but the reference is of pragmatic value and not a source of scientific validation. Scientifically the absence or not of the limb has no bearing on the classification because in neither case can science determine the definitive source of the patient’s experience.

These problems become magnified to absurdity when the classification runs to malingering, factitious and somatoform, because these have no definitive differential scientific basis, they are merely categorisations based on authoritative declaration. One can not test hypotheses of malingering or factitious disorders with prior plausibility applied because there is no means of establishing an empirical measure of what either may consist of. A patient is categorised as a malingerer or as having factitious disorder wholly on the interpretation of an assumed authoritative person, yet a patient so labelled may have subjective experiences that are exactly the same as someone labelled with a somatoform disorder. Psychiatry like many other parts of medicine is a pragmatic process, and categorisations such as malingering or factitious may be pragmatic necessities, but we should not be seduced into an acceptance that the labelling that derives from such pragmatism equates to empirical knowledge or constitutes definitive science.

Finally I think it is not without significance that the now dominant nostrum of psychiatry -CBT – is concerned primarily with belief modification and that CBT’s now wide application involves no explicit distinction between its use in delusional conditions and in the claimed treatment of somatoform disorders, not to mention the catchall of ‘medically unexplained symptoms’. I’m sure CBT practitioners will claim nuanced approaches referenced to specific diagnoses, yet CBT remains primarily a process that is reductive of the patient’s own experiences and perspectives, while enhancing the practitioner’s preferred cultural values, without (in the case of somatoform and functional disorder classifications and in ‘medically unexplained symptoms’) any recourse to the deductive basis of the employed diagnosis as being demonstrable to the patient as a challenge to the patient’s perception.

evilrobotxoxo reply to IVI: As to your claim that what I said about “delusion” is a semantic argument: yes, absolutely, I agree 100%. It is explicitly a semantic argument. My claim is that the word “delusion” has a specific definition, and you were using the word incorrectly. If you were to say that Jay-Z is a country singer, I would similarly make a semantic argument about the definition of “country singer.” I do not claim that either of these definitions are based on any sort of rigorous science, only that they reflect accepted convention.

Arguments about specific definitions aside, I think you’re missing my point about the use of the word “delusion” in a way that is more subtle. You say that there is no clear distinction between beliefs and experiences in true clinical settings, but I disagree with that 100%. For example, say that a person has auditory hallucinations of voices. They could either believe that the voices are a symptom of mental illness, or they could believe that the voices are angels speaking to them. Hearing voices does not make you delusional – BELIEVING the voices makes you delusional. Do you understand the distinction? Delusions are about a dysfunctional process of assigning belief and emotional salience, not about abnormal sensory perceptions. Again, these are simple truths by definition, and none of this is relevant to a discussion about somatoform disorders because those do not involve delusions.

As far as your argument about the definition of conversion disorders go, conversion disorders are essentially defined as when a person has “physical” symptoms that are demonstrably not due to the common “medical” causes of those symptoms. For example, if a person has conversion paralysis of an arm, and an MRI and neuro exam show that everything is intact from motor cortex down to the arm, then it’s a conversion disorder, by definition. The term “disorder” is kind of incorrect here because it should be “conversion syndrome.” No claim about pathophysiology is made. BTW, in a case like this, viruses are discounted for completely valid reasons. I won’t go into detail, but basically the clinical picture and time course are inconsistent with what’s known about viral infections and neurophysiology, and viral infections causing similar symptoms would be detectable through objective means. As I pointed out before, there are objective neurophysiological tests that can be performed to demonstrate the abnormal nervous system function, so the diagnosis of conversion paralysis is basically just making a statement about where the dysfunction is located, i.e. higher up in the CNS and not in the spinal cord or peripheral nerves.

Re: malingering vs. factitious vs. conversion – yes, they’re based on clinical judgment, and they’re likely incorrect a substantial proportion of the time. However, that does not invalidate the existence of those categories. Some people are actually malingering, and some people actually are not. As a child, I personally did both. Whether or not a different person could figure out whether I was malingering or not does not change that fact that sometimes I was, and sometimes I wasn’t. The categories exist.

Re: CBT – you are correct that CBT makes no major distinction between treatment of delusions and somatoform disorders. CBT makes no major distinction between treatment of ANY condition, including treatment of chronic pain from identified medical causes. You think this fact is “not without significance,” but I think the fact that CBT makes no distinctions at all pretty much removes any significance from what you’re saying. As far as the claim that CBT is “primarily” promoting the therapist’s cultural values at the expense of the patient is simply absurd.


A few months ago I woke up and my left elbow was immobilized at 90 degrees. The doctor could find nothing wrong, and the problem resolved itself a few days later.

Now I know what was wrong: Conversion syndrome! LOL. It sure is helpful to finally have an accurate diagnosis.

It was interesting to read an admission that there is no science behind psychiatric terminology.

"the claim that CBT is “primarily” promoting the therapist’s cultural values at the expense of the patient is simply absurd."

It's not absurd - it's exactly my experience with therapists. And I have the therapist's notes to back it up!
I agree with much of what you are saying here IVI. I will be looking at Szatz's views more closely when Amazon finally gets around to sending me some books. I also think we need a very close look at EBM, but from both a scientific and rational perspective. There are huge problems with it. Its far too much about checklists and appearance of scientific rigour, rather than an actual understanding of the scientific claims.

For my book I investigating pseudoscience, psychosomatic history, dysfunctional belief models, evidence based medicine and the biopsychosocial models. They are interconnected. Oh, and lets not forget Zombie Science and the rise of Scientific Lobbying.
Delusion modification - hasn't anyone foregoing sussed this out (after all some are still trying to reason body/mind or whatever) Frankly 12 years of illness puts detractors to shame in their pathetic - gee lets's turn to philosophy - that will detract science for a little while.
Tried reading the whole comment section of that discussion last night at 2 in the morning, not the smartest choice of reading material at that time of day. What I found interesting though from a personal view point, especially from SkepticalHealth was the tendency to struggle with the complicated nature of the illness but what I believe in essence is a personality trait of not being able to deal with the complicated nature of existence itself and always have a need to fall back on an explanation or belief. His exchanges with BillyJoel on a more philosophical level also hinted strongly at this I thought, it showed a complete lack of want to consider potential factors and reduce events or situations down to simple concepts.

It is prime example of what we are dealing with I believe on a broad scale, it really seems a human tendency and need to tag events, people, issues with a belief of some kind to maintain grip on their own ego and their view of the world around them. It generally seems to make people uncomfortable viewing issues in a more complicated manner, that there can be many variables and factors in life; attempting to approach issues with this view point automatically takes much too effort for most people and loosens their blinkers too much.

I wonder in psychology what this kind of behaviour is actually viewed as? It might be ironic to examine this, examine the semantics and use it to argue against hard line psychiatrists; pointing out their own behaviours to others over arguing points of illness technicalities could be very effective.

At least some in that conversation, even the psychiatrists who joined in seemed to recognise this on some level and that it is clearly a complicated issue. Anyway I am not adding much here, other than some pop psychology observations :)
@Ghostgum - I think it would be wrong to include that one particular poster (who I believe has now been banned from that forum) in any general approach to the psychology of pro psychiatric explantions of M.E/CFS. Certainly there is a general probem of 'labelling' - a belief that once something has been named or classified, it is then 'known' - but that is usually relatively easily countered in contexts where a scientific approach is valued. And as you say, there was even a 'self confessed' psychiatrist on that particular thread who was wholly agnostic about the cause of M.E/CFS. There may only be limited opportunities but I do think that 'positive engagement' with at least some members of the psychiatric discipline is sometimes possible.

This Evilrobotxoxo fellow says "CBT makes no major distinction between treatment of ANY condition, including treatment of chronic pain from identified medical causes. ", but this simply isn't true. In some instances it is designed to change a patient's claimed incorrect beliefs regarding worsening of symptoms due to exercise, sleep loss, allergic reaction, or noxious stimuli. However if the patient's reported symptoms in response to such things are 1) Genuine 2) Worsen indefinitely as stated by the patient, regardless of how the patient thinks or feels about it; then CBT is counterproductive. I'm not saying CBT never makes anyone feel any better but whoever says there's no distinction between the kind of CBT that's geared toward "faulty illness beliefs", and the kind that generically reduces unhelpful thoughts, is probably being intellectually dishonest.
IVI, I note from your Mirror blog (apart from portraying ME sufferers in a somewhat-negative light) that you state "CBT based treatments are proven effective in helping CFS sufferers to at least to maintain a level of functionality."

I am copying the link to the relevant here for easy access:

The authors claim to have been studying "patients with chronic fatigue syndrome/myalgic encephalopathy (CFS/ME)." The treatment methods were "group cognitive behavioural therapy (CBT) and support (EAS) and...standard medical care (SMC)." From the full paper I note that 'EAS' was provided by the same therapists as those who provided CBT, and the main focus was relaxation techniques, and it also involved stretching exercises. Not much education there!

Looking at the patient group studied, at baseline 30% were reportedly in the normal range for physical function, and 52% were in the normal range for mental function, so I presume that 48% had some degree of mental illness.

This does not appear to have been a representative patient group.

According to the results, whilst 46% of the CBT group had normal physical function after 12 months, this is only 2 percentage points higher than the group who received standard medical care (44%), who did not even attend the (psychiatric) hospital. Strangely, the EAS group showed a REDUCTION in the number with normal physical function. Relaxing and stretching must be REALLY bad for us!

The authors themselves conclude "Group CBT did not significantly improve cognitive function, quality of life, employment status or healthcare utility measures..."

Nor did the large, publicly-funded, recent 'PACE' trial, nothwithstanding claims made to the contrary.
As for what DOES work, you appear from the Mirror blog to be highly sceptical about (auto)immune activation in the aetiology of ME. How can it also be involved in so many different illnesses?

There is a clear way in which it can.

See this paper:

Many patients with many different illnesses may start out with 'leaky gut'. But they will differ in which substances acquire access to the bloodstream as a result of the leaky gut (and/or possibly other biological barrier(s), e.g. the blood-brain barrier). It will depend, for example, on their diet, medications and other aspects of their environment, and there may well be a genetic element too.

So - different alien substances in the bloodstream - different antibodies. The nature of any resulting autoimmunity will therefore also differ. One substance may have a similar epitope (surface substance that elicits an immune response) to one on the body's own nerve cells, or pancreatic cells, or mitochondria, or cartilage. So different body systems will be attacked.

This also fits observations by many ME patients of the changes in their illness over time. Some symptoms disappear, whilst new ones appear. The autoimmune process is ongoing, as stated in the above-linked paper.

But there may be a more-positive conclusion to draw than that of the authors of the above-linked paper They say "new therapeutic strategies aimed at re-establishing the intestinal barrier function offer innovative, unexplored approaches for the treatment of these devastating diseases." Well, they have to make a case for more funding - it's their living!

There are already natural treatments for leaky gut, and one has been tried and found effective for ME sufferers. See next message.
The abstract for a leaky gut/ME study is here:

I have the full paper but it no longer appears to be available free online. The subject group appeared to be a proper ME cohort from the criteria used: "the patient must have four or more of the following symptoms: substantial impairment in short-term memory or concentration, sore throat, tender lymph nodes, muscle pain, multi-joint pain without swelling or redness, headache of a new type, pattern or severity, unrefreshing sleep, and post-exertional malaise lasting more than 24 hours. Other conditions had also been excluded."

It's not a perfect study, having no control group for example.

The diet was dairy-free, gluten-free and low-carb.

One result was that "the Fibromyalgia and Chronic Fatigue Syndrome Rating Scale (FF scale) decreased significantly in ALL subjects."

This is all consistent with ME being an autoimmune condition which can be treated by repairing a compromised gut wall through diet and supplements.

I am certainly sufficiently persuaded to have been following such a regime since last May. As I have been ill for longer than anyone in the published study (18 years) I expect it to take some time - maybe years - but I have seen sufficient improvement to intend to continue with it indefinitely.

CBT, no thanks.

Psychiatrists, heal thyselves!
I would also like to point out a likely reason for people with ME avoiding vaccines (reference your scathing dismissal of this in your Mirror blog, referring to it as 'antivax').

If one has an overactive immune system (and some of us, myself included, never seem to catch anything), a vaccine, which is designed to increase immune activity, is not necessarily desirable, and indeed could exacerbate illnesses in which immune hyperactivity and/or autoimmunity is a factor. Many people with ME have indeed observed and reported adverse effects from vaccinations. Whilst such observations and reports are anecdotal, there is a saying that statistics is the plural of anecdote!

Many people with ME do report a high susceptibility to infection, but I have a strong suspicion that in most cases this belief is incorrect. The symptoms of ME are identical to those of common infections, probably because they are due to the same mechanism - immune reaction. The symptoms of these common illnesses are by and large due not to the infectious organisms but to our own reactions to them. So it is perhaps impossible in the absence of lab tests to distinguish between an exacerbation of ME symptoms and an infection. 'A virus' is also habitual doctor-speak for "I don't know."

So if some of us are in any way 'antivax', it may be with good cause!
@MeSci. I’m not sure that discussing a Blog from outside the PR parameters, on PR makes much sense particularly given that some of the posts are two years old and the most recent is from May 2012. Below are some briefish responses, but apart from some the organisational and historic stuff on the CFSM Blog, I really regard the articles there as old discussions. Only the most recent article gets any regular traffic, I’m happy to for relevant comments to be added to that, but I’m going to resist further discussion here.

Frenchay study etc: Two years ago I wrote: “ CBT based treatments are proven effective in helping CFS sufferers to at least to maintain a level of functionality." It seems to me that remains substantially true, but in the light of the subsequently published PACE articles the benefits were demonstrated to be limited. The question of what interventions should usefully be employed to assist patients to maintain functionality therefore is open, however the study I quoted appears to me to offer a useful basis on which support services for people with M.E/CFS could be developed in the absence of any immediate ‘cure’.

As far as participant selection for the Frenchay study is concerned – what would constitute a “representative patient group” ? No one can say what a typical level of disability from M.E/CFS in a UK population, would be. You may well have an impression of what a typical M.E/CFS patient is like, but as there are an estimated 240,000 of us in the UK, I doubt that impression could be profoundly accurate. I think this just brings us back to the ‘who does and who does not belong’ meme – which ultimately devolves to personal prejudice. One other point – the Frenchay study was provided within the pain management clinic, not a psychiatric hospital, and as far as I can tell the primary reference for delivery of the active elements was illness management without any notion of cure or judgement about illness origin.
@MeSci. cont.

Auto-immune: I have not written anything about auto-immune disease on the CFSM blog. Perhaps you mean the references I made to ‘neuro-immune’. Certainly I consider the use of that term as it was applied in relation to the WPI and XMRV, to be wholly specious. As far as the term ‘neuro-immune’ was used prior to 2010 it was particular to a few very limited studies, none of which had anything to do with the broad sense subsequently appropriated without any scientific validity by the WPI and others. We can all play the mix and match game of ‘find the aetiology’ but that is not how science works and there’s no point in expecting that clinicians or researchers will take any of our ‘theorising’ seriously. You’ll not be surprised that I’m not enthusiastic about being sold anything on the basis that it’s natural, a term that seems to me to be universally specious – what in 1 trillion galaxies is not ‘natural’ ?

Diet: What you eat is up to you. If a particular diet makes you feel better, then fine follow that. I would suggest that anyone with M.E/CFS cautiously goes about establishing limited exclusion – that is taking breaks from certain foods and where there seems to be benefit from avoidance, reintroducing only rarely. Of course if there are gross symptoms like migraine and exclusion drastically reduces the problem then of course total avoidance makes sense. None of this however validates ‘leaky gut’ or any other hypothesis, nor is the extrapolation: “I have M.E/CFS, and this diet works for me – THEREFORE – this diet will work for everyone with M.E/CFS” : valid.
@MeSci. cont.

Antivax: refers to a particular activist position, I certainly wouldn’t characterise individual choice in adult vaccine avoidance as inherently ‘antivax’ – although failure to recognise social obligations in not protecting oneself might bespeak the arrogance of an antivax perspective. I’m very dubious about claims of ‘many people’ – even if the numbers experiencing an impact on health that is coincident with a vaccination are high, there is no way to resolve the correlation not causation issue. With an incidence rate of 5,000 – 10,000 per annum in the UK one might expect several hundred to have illness onset that is coincident with some form of protective injection, every year. The collective noun for anecdotes used spuriously is annecdata. The symptoms of ALL infections are a product of ‘our reaction to them’ - if we didn’t react we wouldn’t, by definition, be ill.

I do appear to have made an error re 'psychiatric hospital', for which I can blame brain fog. I note that the paper refers instead to 'health psychology department'.

With regard to defining the typical ME patient, this page describes the CDC criteria, which are well-respected:

The NICE Guideline is broadly similar in its description of the illness:

Unfortunately they then go on to abandon logic and recommend CBT and GET, which is widely criticised, including by ME Research UK.

There are also categories of severity which I think are generally accepted by those who have seen them. Action for ME have them on their site.

I know that you did not mention autoimmunity.

I am not theorising but citing scientific papers. I have not stated that natural treatments are better than other types, simply that one has been found effective for ME in a scientific study. Out of interest, I wonder whether you are a scientist?

Numerous things can increase the permeability of biological barriers such as the gut wall and the blood-brain barrier. These include stress, physical trauma, infection (thus probably also vaccination), certain chemicals including medications, diet (especially in individuals with impaired carbohydrate metabolism, lactose intolerance or gluten-sensitivity, for example), and antibiotics (as witness the gastrointestinal problems commonly occurring when these are taken, and the fact that probiotics are now sometimes prescribed along with them).

I have spent a lot of time over the years reading scientific papers relevant to ME, in order to try to use the findings to treat myself and help others, knowing all-too-well how long it can take for scientific knowledge to translate into clinical practice.

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