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Functional somatic syndromes may be either “polysyndromic” or “monosyndromic” - Peter Denton White

Dolphin

Senior Member
Messages
17,567
To our patients' benefit, we have now moved the debate a long way from functional somatic syndromes being considered “all in the mind” [24].
I don't get too excited when PDW says CFS or other conditions aren't "all in the mind". He accepts there can be abnormal test results which he puts down (mainly) to deconditioning.
 
Messages
13,774
I don't get too excited when PDW says CFS or other conditions aren't "all in the mind". He accepts there can be abnormal test results which he puts down (mainly) to deconditioning.

I'm pretty sure that the piece of his that he cited has been discussed on here to, and was not impressive. I don't think it supports his point in the way many readers would expect.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
I don't get too excited when PDW says CFS or other conditions aren't "all in the mind". He accepts there can be abnormal test results which he puts down (mainly) to deconditioning.

I was reminded earlier about the use of the phrase sub-phenotypes - used above by White. Used also by the MRC when they recently extended the original funding:
Improved sub-phenotyping and stratification of CFS/ME: CFS/ME is often considered a broad spectrum disorder or syndrome and, as in other disease areas, it may be that the causes and mechanisms underpinning diverse symptom profiles are different. Better patient phenotyping and stratification could provide valuable new insights into the natural history of the disease and enable the development of more effective, better targeted treatments.
Interestingly, that detail from the MRC was also accompanied by other more positive news as I am sure you will remember better than I. Combined I do feel it served as something of a turning point e.g.
There is evidence for a disturbance in innate and adaptive immunity in CFS/ME including alterations in cytokine profile, absolute and functional alterations in T cells and NK cells and occurrence of autoantibodies and allergic reactions that may explain some of the manifestations such as fatigue and flu-like symptoms. A number of infectious and environmental exposures have been associated as triggering these changes.
and
There is now preliminary evidence supporting the view that inflammatory mechanisms in the brain and spinal cord may underlie the pathophysiology of some severe disease CFS/ME phenotypes. Biobanks are now becoming available and create a unique opportunity for interrogation.

http://www.meassociation.org.uk/?p=12251

The latter quote has I noticed been used by IiME as part of their promotion for this years 8th conference. I am wondering, hoping, if we are seeing a case of finally singing from the same hymn sheet.

Of course White I understand is a member of the MRC Expert Group so you might say he is already onboard. Then again you might not.

It is reasonable to suggest that in the paper you began this thread with White wasn't talking exclusively about ME/CFS at all and I am stretching things rather a bit.
 

Dolphin

Senior Member
Messages
17,567
I was reminded earlier about the use of the phrase sub-phenotypes - used above by White. Used also by the MRC when they recently extended the original funding:

Interestingly, that detail from the MRC was also accompanied by other more positive news as I am sure you will remember better than I. Combined I do feel it served as something of a turning point e.g.

and


The latter quote has I noticed been used by IiME as part of their promotion for this years 8th conference. I am wondering, hoping, if we are seeing a case of finally singing from the same hymn sheet.

Of course White I understand is a member of the MRC Expert Group so you might say he is already onboard. Then again you might not.

It is reasonable to suggest that in the paper you began this thread with White wasn't talking exclusively about ME/CFS at all and I am stretching things rather a bit.
The MRC could have changed.
I haven't seen evidence that Peter White has changed from his position of recommending graded exercise therapy for all or the other "hardline" positions exposed in his submission on the draft NICE guidelines: http://bit.ly/AcWj0V
Peter White has done bits of biological research in the past.
 

PhoenixDown

Senior Member
Messages
455
Location
UK
Mirror Images cover 1b.jpg
While trying to find a forum White may of recruited from for his study.. I noticed CFS being mentioned as a functional stomatic syndrome in the first thread I looked at...
http://www.tmshelp.com/forum/topic.asp?TOPIC_ID=7863
That place is like a creepy mirror universe version of our forum, where everything is opposite but parallel. Perhaps in the mirror universe Alex's avatar is Chunk from the Goonies instead of Einstein.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Satire is a powerful political tool. ;)

In a few months I hope to start a thread or threads that either contain just satire, or contain press releases on psychobabble but rewritten to be strictly factual, as explicitly factual as we can make it. Lets expose the spin. There is some really good satire out there that we can post links to as well.
 

biophile

Places I'd rather be.
Messages
8,977
White says FSSs "are probably the most useful description of a group of conditions presenting with physical symptoms and disability for which medicine cannot find presently a convincing explanation". White wants to merge neurology and psychiatry together as a single discipline. IIRC it is often implied that the word functional is neutral on cause, but most neurologists and psychiatrists would define functional as non-organic, which is not in fact a neutral placeholder. So what happens when biomedical science does eventually find a convincing explanation for so-called FSSs?

As Alex said, medicine started out with almost everything being medically unexplained. The etiology of MS itself is still not established, but symptoms are explained (demyelination, white matter lesions, immune-mediated). We need an accepted equivalent for CFS, in which the symptoms can be explained even if the etiology cannot. There must be biological abnormalities in CFS which correlate with or even explain symptoms. AFAIK, a picture is already emerging from the research despite the heterogeneity, although I am not in good enough shape right now to properly outline what that is.

Whether or not the biological abnormalities in CFS are "organic" or "psycho>somatic" or "functional" or somewhere inbetween is another story, sooner or later this will become more obvious when the nature of the abnormalities is better established. I doubt there is a strict division between organic damage and functional disturbances in biological function, but I know where I am placing my bets on the spectrum, and those bets are not on many of White's views.

Biopsychosocial Medicine: An Integrated Approach to Understanding Illness[6] is the product of a two-day conference held under the auspices of One Health—an organization that seeks to promote a system of healthcare based on this approach—and the Novartis Foundation. In his preface the convenor, Peter White tells us that his rationale for organizing the conference was a concern that medicine is travelling up a blind alley in its attempt to help patients improve their health and reduce their disability. ‘This blind alley is the biomedical approach... The twenty-eight participants, who represented psychiatry, medical history, general practice, epidemiology, and psychology, were asked to deliberate on whether the model is a luxury or a necessity, and a key reference point was George Engel's famous 1977 paper in which the term biopsychosocial medicine first appeared.[7] But it was Engel's follow-on paper, looking at clinical applications of the model,[8] that generated special passion among the contributors.[8] So far as my own discipline is concerned, I confess to puzzlement about this whole enterprise: primary care, in its quest to deliver holistic patient-centred care, has long since embraced the biopsychosocial approach—as was indeed made clear at the conference.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1199645

I can appreciate the consideration of psychosocial factors outside or in integrative addition to a reductionist biomedical model eg BIO-psycho-social, but biomedical science still has so much promise to improve the health of humanity. I believe that in this century we are going to start seeing many major chronic diseases (including psychiatric diagnoses) being much better treated or even cured while the FSS/MUPS issue will be elucidated enough to make the current ideas look as crude as Freud's era does now. The progress is mostly going to come more from advanced biological research than increased consideration of psychosocial factors (which to be fair can still have significant importance).

Has anyone even seen White write a single paper on CFS which incorporates the findings of researchers with a more biomedical perspective of CFS, such as the Lights, Pacific Labs, and Klimas etc? White mentions "sleep–wake circadian rhythms, nocturnal sleep architecture, autonomic nervous system, hypothalamic–pituitary–adrenal axis, cytokine distributions, and central nervous system sensitisation", but these are usually framed by White and colleagues as functional and arising from or mainly perpetuated by cognitive and behavioural factors. If anyone can currently get White to state that FSSs are probably caused and perpetuated top-down by unknown biomedical factors more than top-down cognitive-behavioural factors, then I will eat a corked hat on Youtube (figuratively speaking).

Moving the FSS debate beyond "all in the mind" is about as impressive as moving 21st century medicine beyond the four humours and vitalism: so what? Deconditioning (White's seemingly favourite explanation for PEM in CFS), and the physiological effects of mental states etc are not "all in the mind" either. I would like to see White and others move beyond the assumption that the critical reaction to their work is based on misinterpretations of it as "all in the mind". LOL Alex for comparing psychosomatic medicine to alchemy and astrology; if alchemy and astrology helped give birth to chemistry and astronomy respectively, it will be interesting to see what psychosomatic medicine will become?

Since the 1970, the concept of psychosomatic diseases has gradually fallen into disuse because research has shown that stress can contribute to the development of a diverse array of other diseases previously believed to be purely physiological in origin. Although there is room for debate on some specific diseases, stress may influence the onset and course of heart disease, stroke, gastrointestinal disorders, tuberculosis, multiple sclerosis, arthritis, diabetes, leukemia, cancer, various types of infectious disease, and probably many other types of illnesses (Brummett et al,. 2004; Critelli & Ee, 1996; Dougall & Baum, 2001; Murison & Milde, 2007). Thus, it has become apparent that there is nothing unique about the psychosomatic diseases that requires a special category. Chapter 5 goes into greater detail, but suffice it to say that modern evidence continues to demonstrate that the classic psychosomatic diseases are influenced by stress, but so are numerous other diseases (Jones & Bright, 2007; Levenson et al., 1999).

Psychology Applied to Modern Life: Adjustment in the 21st Century

Wayne Weiten (Author), Dana S Dunn (Author), Elizabeth Yost Hammer (Author)
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Have any been independently validated? Only ones I'm aware of have been small studies and crucially set the key healthy/CFS thresholds post-hoc, after sight of the data and to maximise effectiveness for their particular sample. And that doesn't make a biomarker. Closest I'm aware of is reduced NK cell cytotoxicity in CFS patients vs healthy controls, but this was only a bioabnormality, with substantial overlap between patients and controls.

There was a mito dysfunction one years ago in which they could distinguish control group from the ME/CFS one fairly accurately and which they also could tell from the test results, in what severity group the patients were in. I dont think it was thou independently validated . Too many of the very interesting studies havent been followed up by others.

edit.. I just found the study I was refering to http://www.ijcem.com/files/IJCEM812001.pdf
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Here's briefly and in general terms what I think is going to happen. Sub-categorisation (phenotyping) will occur based largely on the results from research such as that of Newton and others. What I don't see happening as a result of any of this is that 'ME' will emerge as a distinct condition from the 'pot' of patients with a diagnosis.

What will happen is that within the pot of diagnosed patients - especially at the severe end and with regard to actual clinical delivery - is a greater tailoring of any treatments prescribed or tests recommended. What do I mean?

Well, take muscles. Within the 'pot' those who have most problems with acid production and retention and for whom exercise is either impossible or comes with problems presently defined as PEM - will receive specific identification and specific treatment. This would then enable them to have a more tailored 'rehabilitation' programme.

I think 'rehabilitation' and the principles of CBT for that matter are too ingrained as clinical practices now for us to see them withdrawn as recommendations for CFS/ME.

Similar to the muscle work, POTS and autonomic dysfunction (including cognitive difficulties) will also see specific identification/testing of those in the severe category and/or for whom these symptoms are of most concern. Specific treatment in this regard is a reasonable hope and will enable people to again undertake a programme of 'rehabilitation' should such a need be identified.

The same thing will happen for those who are identified as having 'inflammation' problems - although specific treatment for this may be harder to come by (my knowledge of this is rather scant but based on personal experience of encephalitis there was no prescribed treatment that I can remember and I am not aware that anything exists now - perhaps it does for the most severe presentation I don't know).

And for sleep dysfunction. Patients will be identified and the most severe will have testing and specific treatment - should research develop and then have a treatment approved.

Not all treatments or more tailored 'rehabilitative' or management approaches will be appropriate for everyone in the 'pot' but it is perhaps likely that for some - maybe those in the 'severe' category - they will be. It will comprise a continuing personalisation at the clinical delivery level.

In diseases like MS and Parkinson's, Rheumatoid Arthritis and even Osteoarthritis, more is know about the mechanisms leading to the symptoms but not of the cause themselves. However this hasn't stopped research from continuing in terms of trying to discover more about what causes some people to develop the condition, and why some who do develop it, suffer more from some of the symptoms and not so much from others.

Treatments are tailored for these patients also but 'rehabilitation' is applied similarly, and graded exercise as well as the principles of CBT are applied as part of that delivery as and when considered appropriate or indeed asked for by the patients themselves.

Of course the end goal is to try and understand what causes our various degrees of disability and more about what triggers it and why it so often is reported as fluctuating. But I think discovering an aetiology is a long shot and than in the meantime learning more about the development of specific symptoms and perhaps targeting more effective treatments for them will be something reasonable to ask of science and medicine.

If the relieving of particularly disabling symptoms can allow people to engage better with 'life' and enable a return to some greater participation in e.g. work then this is something I would certainly be very supportive of - no matter who delivers the treatment or the science behind it.

But a return to pre-illness states for all those of us with this diagnosis is not something I think is a reasonable expectation although if new treatments are delivered quickly enough in the future it might help prevent progression to the chronic stage.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
To Val, an interesting and perhaps more realistic interpretation of CBT for CFS/ME The language is perhaps more conducive to a position from where we both might be coming from I thought:

Cognitive Behavioral Therapy (CBT)

CBT is a much publicized and debated psychotherapeutic intervention for ME/CFS that addresses the interactions between thinking, feeling and behavior. It focuses on current problems and follows a structured style of intervention that usually includes a graded activity program.

CBT may improve coping strategies and/or assist in rehabilitation, but the premise that cognitive therapy (e.g., changing "illness beliefs") and graded activity can "reverse" or cure the illness is not supported by post-intervention outcome data.

In routine medical practice, CBT has not yielded clinically significant outcomes for patients with ME/CFS. Furthermore, the lack of CBT providers who specialize in this illness (psychologist, social worker, or nurse) indicates that CBT may not be an option for many patients with ME/CFS.

More detailed information on CBT protocols and the controversy surrounding its application in ME/CFS is presented elsewhere.

31 December 2012: http://www.guidelines.gov/content.aspx?id=38316

Guideline thread: http://forums.phoenixrising.me/inde...ow-as-of-31-dec-2012-on-guidelines-gov.21213/
 
Messages
15,786
In diseases like MS and Parkinson's, Rheumatoid Arthritis and even Osteoarthritis, more is know about the mechanisms leading to the symptoms but not of the cause themselves. However this hasn't stopped research from continuing in terms of trying to discover more about what causes some people to develop the condition, and why some who do develop it, suffer more from some of the symptoms and not so much from others.

Treatments are tailored for these patients also but 'rehabilitation' is applied similarly, and graded exercise as well as the principles of CBT are applied as part of that delivery as and when considered appropriate or indeed asked for by the patients themselves.

The problem is that the same researchers that have done some really low-quality research into ME are some of the ones applying the same principles to other diseases. Lots of physical symptoms = more psychiatric problems on bad questionnaires, and thus provides an opening for therapy aimed at fixing problems that might not actually exist, and potentially doing harm in the process.

Are there groups other than the ME BPS bunch using GET and ME-style CBT on those other diseases?
 

user9876

Senior Member
Messages
4,556
The MRC could have changed.
I haven't seen evidence that Peter White has changed from his position of recommending graded exercise therapy for all or the other "hardline" positions exposed in his submission on the draft NICE guidelines: http://bit.ly/AcWj0V
Peter White has done bits of biological research in the past.

Academics often bend their language to what the research councils say so that they can apply for new grants. Many seem to end up doing much the same work just using different language.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
The problem is that the same researchers that have done some really low-quality research into ME are some of the ones applying the same principles to other diseases. Lots of physical symptoms = more psychiatric problems on bad questionnaires, and thus provides an opening for therapy aimed at fixing problems that might not actually exist, and potentially doing harm in the process.

Are there groups other than the ME BPS bunch using GET and ME-style CBT on those other diseases?

Yes. But your definition of 'ME-style' CBT is not my experience of applied clinical practice. And we've had that debate several times over so I won't go there.

The principles of CBT and Graded Exercise are embedded in the psyche of healthcare, Val. It should be personalised, tailored and delivered to patients only when considered appropriate. I do not believe this to be the scary treatment that some would infer that it is.

However, when no other treatment is offered I can wholly appreciate that both are lacking. If either or both are tried and found to be of little or no use - then at least the patient has tried. And that's no different to trying a drug and finding it doesn't reach the parts such a drug is intended to meet.

When I hear CBT and GET sold as 'cures' or sold unrealistically, I really do despair, Val. In that I think we are on the same lines. Any therapy or treatment that is delivered to a patient unrealistically should not be condoned. That practitioner should be pulled from patient care and subjected to a re-education and/or water-cannon.

If a patient with our diagnosis can better learn to realistically manage the condition through the intervention of those who use the principles of Graded Exercise/Activity Management and/or CBT then I think that deserves our support. But like drugs the proof is in the eating.

There is no single approach or delivery or drug that we all can take and feel our symptoms have improved or that holistically we feel better able to get on with life - but I do believe that drugs and therapies should be made available generally in order that healthcare practitioners and patients can work together to 'pick and mix'.

My 'suck it and see' approach to my condition and the various treatments offered to me over 15 years remains the best advice I could possibly give to others. In order to see if you are able to gain something from whatever you might be recommended you have to try it yourself.

If through engagement with patients and better education we can help to ensure that healthcare practitioners are more informed about the condition and the patients who live with it from a holistic point of view and symptomatically - we might see less of the 'horror' stories appearing on forums etc.

Even if better treatments do come from the research currently being developed, I repeat, I do not expect CBT and GET and Activity Management to disappear from NICE. Rather new treatments for specific and defined symptoms that may not be applicable to all patients (probably wont) - will be seen as a compliment to the current approaches.

Those approaches will be refined. I have no doubt about that. As more understanding (through science) becomes known the approaches to delivery of CBT/GET/Activity Management will change and I hope a far more personalised delivery will come about - most especially for those in the severe category.
 

user9876

Senior Member
Messages
4,556
Satire is a powerful political tool. ;)

In a few months I hope to start a thread or threads that either contain just satire, or contain press releases on psychobabble but rewritten to be strictly factual, as explicitly factual as we can make it. Lets expose the spin. There is some really good satire out there that we can post links to as well.

Many years ago Garisson Cottrell did a satirical take on cognitive science by looking at dogs and hence dognitive science. A journal even had a humour section so he could publish it.
ftp://ftp.cs.ucsd.edu/pub/guru/Dog-abstracts/

Maybe some medical journals need a humour section!
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Many years ago Garisson Cottrell did a satirical take on cognitive science by looking at dogs and hence dognitive science. A journal even had a humour section so he could publish it.
ftp://ftp.cs.ucsd.edu/pub/guru/Dog-abstracts/

Maybe some medical journals need a humour section!

Oh, a little bit like this perhaps? http://forums.phoenixrising.me/index.php?entries/the-doggy-treat-model-of-why-it-is-so.830/

Satire can reach people that other methods cannot.

A medical humour section! Gosh no, it would make them look too much like Readers Digest! ;)
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
In the mirror universe the mirror Tania holds up signs saying:

View attachment 4331

and SilverbladeTE is a mild mannered Scotsman who praises notorious psychiatrists.

*sings, with apologies ot Tony Basil*
Oh Wessely
You're such a moaning swine
You're got us in a bind
You blow my mind
Hey Wessely! Hey! Hey!
Hey Wessely! Hey! Hey!

Oh Dr White
You're so blind
You've got us in a bind
You blow my mind
Hey Wessely! Hey! Hey!
Hey Wessely!

Oh Wessely
You're sociopathic
You're transparent plastic
You blow my mind
Hey Wessely! Hey! Hey!
Hey Wessely! Hey! Hey!

Oh Dr White
You're off drinking wine
You're luxuries are so fine
You blow my mind
Hey Wessely! Hey! Hey!
Hey Wessely!
Hey, Wessely!

You've been around all this time
And that's a little long
You think you've got it right
And I think you got it wrong
But can't you say goodnight
So can't you sod off home, Wessely

Cuz when you say you will
It always means you won't
You're giving me the chills
Baby, please baby, don't
Everynight you still leave me all f'ed up, Dr White

*Oh Dr White, what a pity
You don't understand
You stab me in the heart
When you take me by the hand

Oh Wessely, you're so pretty
Can't you understand
It's guys like you Wessely
Oh what you do Wessely, do Wessely
Don't break my heart Wessely!

Hey Dr White!
Now when you spin more bullshit
Who's ever gonna know
Everytime you write I let
A little more angusih show
It's something we can use
So don't say no Wessely

So c'mon and give it up, and do the decent thing,
Anyway you wanna do it
I'll treat you like a man
But please baby please, don't leave me in the crapper

*Oh Dr White, what a pity
You don't understand
You kick me in the ass
When you take me by the hand
Oh Wessely, you're so petty
Can't you understand
It's guys like you Wessely
Oh what you do Wessely, do Wessely
Don't break my heart Wessely!

Oh Wessely
You're a moaning whine
You're so blind
You blow my mind
Hey Wessely! Hey! Hey!
Hey Wessely! Hey! Hey!

Oh Wessely
You're so full of rind
You're so blind
You blow my mind
Hey Wessely! Hey! Hey!
Hey Wessely!

Oh Wessely
You're so fine
You're so fine
You blow my mind
Hey Wessely! Hey! Hey!
Hey Wessely! Hey! Hey!

Oh Wessely
You're so fine
You're so fine
You blow my mind
Hey Wessely! Hey! Hey!
Hey Wessely!
:alien:

original