Wessely honoured with a knighthood for his work for GWS and ME

[user9876]

Has any serious attempt at such cluster analysis ever been made? Where's that mass of data, and where are the papers on this effort, for ME/CFS, or for GWI? If we are now, decades on, still at the point where in both cases the approach is still to look at the whole cohort as a massive, heterogeneous blob, is that situation not a devastating indictment on those who've taken principle responsibility for investigating these illnesses?

Part of any classification or clustering process is to have a defined feature space. Hence a precursor to clustering on a the whole cohort would be to have a consistant way to describe symptoms. This would mean doing things like defining a more accurate language to describe fatigue and other symptoms.

It does seem strange to me that no one has done this especially given it would be easy enough to use standard questionaires across multiple treatment centers, scan them then there is database software that will do much of the analytics.

 

[Firestormm]

Thanks Valentijn.
So even their own research demonstrates cognitive disability in CFS patients?
I'm certain that there has also been non-Wessely research which demonstrates that CFS/ME patients have cognitive deficits.
I'll look it up later.

(Edited.)

Prof. Julia Newton by any chance? Autonomic dysfunction in fatigue-associated diseases including, most especially, ME. Several papers published, but her recent presentation (that I am transcribing) to the AFME AGM in November, showed how cognitive problems are a likely casualty.

Most recent thread here: http://forums.phoenixrising.me/inde...tics-of-novel-subgroup-cfs.20807/#post-316068

Will shove the transcript on the forum when I have done the darn thing

 

[Enid]

The man needs to go to a psychiatrist - delusions of grandeur - poss some Freudian need to prove SW - so very happy to deny science - well they always were.A real personality problem for sure - he not seem to know the difference between real illness and his airey fairy nonsense. (though much shifting of position around his "unexplained" illnesses seems to going on now).

 

[dannybex]

You are correct. It isn't scientific enough for me. I would however, be interested in seeing these journal articles. The couple I looked at seemed to be based on a false premise.

Sigh.

Here are some studies showing links...about halfway down the page:

http://www.lassesen.com/cfs/index.php/archives/440/?fb_source=pubv1

BTW, Ken Lassesen, the blog's author, was recovered from ME/CFS for over 10 years, full of energy and working full time, until this past spring, when he suffered a relapse.

He's currently about 40-50% recovered, and just did his first hike yesterday, starting out slow, and cutting the distance down to 20% of the usual hikes he's been doing for the last 7-10 years.

 

[Ember]

Cognitive functioning and disturbances of mood in UK veterans of the Persian Gulf War: a comparative study.
David AS, Farrin L, Hull L, Unwin C, Wessely S, Wykes T.
Psychol Med. 2002 Nov;32(8):1357-70.
http://www.ncbi.nlm.nih.gov/pubmed/12455934

I haven't got access to the full paper, so I can't judge its quality, but it doesn't seem to be an investigation into GWS, specifically, and nor does the King's College document.

Here's the study's rationale for using a SF36-PF cut-off as a “functionally meaningful case definition:”

Participants

This study forms part of the second phase of an initial epidemiological survey. A random sample of those who had served in either the Gulf or Bosnia in peace keeping operations, or who had been in the military at the time but served in neither theatre (the ‘Era’ group), were sent a postal questionnaire asking about their military experiences including deployment, exposures, illnesses and symptoms (Unwin et al. 1999). We used a generic measure of ill health. In phase 1, the Medical Outcome Study Short-Form 36 Physical Functioning (SF36-PF: Ware et al. 1993) subscale was completed by all respondents. This requires participants to rate any limitation they may have in physical activities in a typical day (not at all ; a little ; a lot) in relation to specific activities which are listed individually. The value at the first decile of the distribution of the SF36-PF subscale in the Era cohort (72n2) was used as the cut-off to define ill health in all three cohorts. The Era cohort was considered the most representative of the military as it comprised 80% of the UK Armed Forces. The rationale was first to prevent a selection bias in defining Gulf cases and non-Gulf controls. Using an alternative case definition based on specific symptoms, for example mental health problems, in Gulf veterans may have led to an erroneous assumption that the nature of ill health in Gulf veterans was the same in non-Gulf veterans. By applying the first decile (the lowest 10% scores) as a cut-off on the SF36-PF, those who were most disabled would be identified – hence we ended up with a functionally meaningful case definition (emphasis added).

Although the study states that “memory and concentration difficulties and disturbances of mood are among the most commonly reported symptoms associated with service in the 1990–1991 Persian Gulf War,” the cohort is nevertheless selected using a physical-function scale:

HEALTH AND DAILY ACTIVITIES

The following questions are about activities you might do during a typical day. Does your health limit you in these activites? If so, how much? (Please tick one box on each line) Yes, limited a lot; Yes, limited a little; No, not limited at all:

(a)Vigorous activities, such as running, lifting heavy objects, participating in strenuous sports
(b) Moderate activities, such as moving a table, pushing a vacuum, bowling or playing golf
(c) Lifting or carrying groceries
(d) Climbing several flights of stairs
(e) Climbing one flight of stairs
(f) Bending, kneeling or stooping
(g) Walking more than a mile
(h) Walking half a mile
(i) Walking 100 yards
(j) Bathing and dressing yourself

Physical function dimension of the SF-36.

A comparison with "chronic fatigue sufferers" appears in the conclusions:

There is no evidence of major neuropsychological impairment in GW veterans. Those weak effects that were detected were patchy in terms of the cognitive systems implicated. Furthermore, they were just as likely to be attributable to any active deployment and hence not likely to be related to specific Gulf-related exposures – with the exception of the Purdue Assembly measure. Test performance in unwell veterans was impaired relative to well controls but generally within the normal range. More noteworthy was the increase in self-reported depression, anger and PTSD symptoms and subjective cognitive failures in association with ill-health. Although we attempted to control for depression in our analysis of the neuro-psychological data, we propose that this level of psychopathology is the most parsimonious account for the bulk of reported subjective cognitive deficits, as well as the more sparse objective deficits. It is possible that subjective (and minor objective) cognitive deficits lead to low mood and increased ‘stress’. This hypothesis has been examined in relation to unexplained symptoms in the civilian population, such as chronic fatigue sufferers. The findings show that even after controlling for functional disability by employing comparison groups with multiple sclerosis, neuromuscular conditions, rheumatoid arthritis, etc., levels of psychiatric disturbance remain significantly higher in the ‘unexplained’ illness group (see David, 1991 for a review). Hence depression as a reaction to functional impairment or subjective ill-health is an inadequate explanation on its own (emphasis added).

More: [PDF] David 2002 - cognitive function.pdf - King's College London

See also: "Postviral fatigue syndrome and psychiatry" (David, 1991)

 

[biophile]

Overweight or unhealthy people who refuse to attend exercise sessions could have their benefits slashed, in a move proposed by Westminster Council.

http://www.bbc.co.uk/news/uk-england-london-20897681

A sign of things to come for CFS and CBT/GET?

The value at the first decile of the distribution of the SF36-PF subscale in the Era cohort (72.2) was used as the cut-off to define ill health in all three cohorts.

http://www.kcl.ac.uk/kcmhr/publications/assetfiles/gulfwar/David2002-cognitivefunction.pdf

So, what PACE would regard as "normal" physical function then.

 

[alex3619]

Hi user9876, symptom sets for clustering are much less important than biochemical or physiological data for clustering. These will give us diagnostic and treatment biomarkers, and a clue as to treatment or cure. The systems biology researchers are working on this.

My guess is that most biomedical researchers have mainly looked at chemistry etc, so did not focus as much on symptoms, while the psycho-psychiatric researchers see no need. Part of the problem also might be a lot of the recorded data is "patient with fatigue", "another patient with fatigue", "yet another patient with fatigue" - not very useful for clustering.

Such patient/symptom/test databases for datamining etc. is the current focus of several projects I am aware of, though I do not recall specifics. I think PR has one, CAA has one, and there is another one? None are complete I think. The CAA one might be the best funded.

Once we get such databases running then clustering algorithms can take care of the rest.

Bye, Alex

 

[Kati]

In regards to forcing obese people to exercise, funny thing that smoking is not being act upon in the same way considering that cigarette causes a whole array of conditions and diseases, mortality and morbidity. What's the difference?

I would suggest that attachment with tobacco industry and the fact that decision makers who are smokers themselves create a problem, but that is a topic for another time, I guess...

 

[Valentijn]

The value at the first decile of the distribution of the SF36-PF subscale in the Era cohort (72n2) was used as the cut-off to define ill health in all three cohorts.

72.7 is a very high value. The test makers say average is is 84, with a standard deviation of 23. My score was 20, and I recall the Rituximab trial showed something similar for ME patients. Looking at the lowest 10% for a disease likely affecting a much smaller percentage is just daft.

 

[Firestormm]

In regards to forcing obese people to exercise, funny thing that smoking is not being act upon in the same way considering that cigarette causes a whole array of conditions and diseases, mortality and morbidity. What's the difference?

I would suggest that attachment with tobacco industry and the fact that decision makers who are smokers themselves create a problem, but that is a topic for another time, I guess...

You are right of course Kati. Ban tobacco, Ban Alcohol, Ban Saturated Fat, Ban Junk Food, Ban Sugar etc. etc. It all a lot of nonsense this tinkering around the edges. Westminster Council are taking the ****. I had to laugh. One chap who was on benefits IN WESTMINSTER and was using his free gym membership was interviewed - whilst smoking a fag!! When asked (BBC Radio 4) he said: "Well you have to have some vices, don't you?" Good on him I say. Not only is this proposal 'nuts' it goes against freedom of choice. Westminster Council want to charge people through Council Tax penalties for not using their free gym memberships - it's crazy-ass-bonkers. Mind you it will probably happen. Anything to squeeze benefit scroungers out of Westminster - and now the Housing Benefit lot of bums are being evicted - it's open season for plebs

 

[Kati]

You are right of course Kati. Ban tobacco, Ban Alcohol, Ban Saturated Fat, Ban Junk Food, Ban Sugar etc. etc. It all a lot of nonsense this tinkering around the edges. Westminster Council are taking the ****. I had to laugh. One chap who was on benefits IN WESTMINSTER and was using his free gym membership was interviewed - whilst smoking a fag!! When asked (BBC Radio 4) he said: "Well you have to have some vices, don't you?" Good on him I say. Not only is this proposal 'nuts' it goes against freedom of choice. Westminster Council want to charge people through Council Tax penalties for not using their free gym memberships - it's crazy-ass-bonkers. Mind you it will probably happen. Anything to squeeze benefit scroungers out of Westminster - and now the Housing Benefit lot of bums are being evicted - it's open season for plebs

I will add that obesity is a complicated issue. Back in the years, say 50 years back when people worked in the fields, I bet there was no obese people. We are more sedentary, the phenomenon of fast food, video games, TV, media, more refined food, perhaps biology (genetics, endocrinology,etc) all play factors into obesity. There are no easy solution, however telling an obese person to simply exercise is not the answer (in my opinion). It is too simplistic.

As for smoking- talk about the government being in bed with the tobacco industry- if there was no such alliance, cigarettes would be banned, and no one would be smoking- but then that is complicated too, right- there would be smuggling and theft and pretty angry people.

 

[dannybex]

I will add that obesity is a complicated issue. Back in the years, say 50 years back when people worked in the fields, I bet there was no obese people. We are more sedentary, the phenomenon of fast food, video games, TV, media, more refined food, perhaps biology (genetics, endocrinology,etc) all play factors into obesity. There are no easy solution, however telling an obese person to simply exercise is not the answer (in my opinion). It is too simplistic.

There were also virtually no vegetable, nut or seed oils 50+ years ago, until they found they were useful for fattening up cattle and pigs. We've been inundated with waaaay too much of these omega six oils, which are said to strongly inhibit mitochondrial function, thyroid function, etc., etc..

And then there's high-fructose corn syrup...on and on and on....

 

[user9876]

Hi user9876, symptom sets for clustering are much less important than biochemical or physiological data for clustering. These will give us diagnostic and treatment biomarkers, and a clue as to treatment or cure. The systems biology researchers are working on this.

My guess is that most biomedical researchers have mainly looked at chemistry etc, so did not focus as much on symptoms, while the psycho-psychiatric researchers see no need. Part of the problem also might be a lot of the recorded data is "patient with fatigue", "another patient with fatigue", "yet another patient with fatigue" - not very useful for clustering.

Such patient/symptom/test databases for datamining etc. is the current focus of several projects I am aware of, though I do not recall specifics. I think PR has one, CAA has one, and there is another one? None are complete I think. The CAA one might be the best funded.

Once we get such databases running then clustering algorithms can take care of the rest.

Bye, Alex

Your right. I was thinking that is an approach that even th pschiatric researchers could have followed if they were interested in understanding the disease better.

Part of the problem also might be a lot of the recorded data is "patient with fatigue", "another patient with fatigue", "yet another patient with fatigue" - not very useful for clustering.

That was my point about needing a well defined language to describe features of fatigue. As opposed to a scale where you simply add up question results.

 

[Firestormm]

I will add that obesity is a complicated issue. Back in the years, say 50 years back when people worked in the fields, I bet there was no obese people. We are more sedentary, the phenomenon of fast food, video games, TV, media, more refined food, perhaps biology (genetics, endocrinology,etc) all play factors into obesity. There are no easy solution, however telling an obese person to simply exercise is not the answer (in my opinion). It is too simplistic.

As for smoking- talk about the government being in bed with the tobacco industry- if there was no such alliance, cigarettes would be banned, and no one would be smoking- but then that is complicated too, right- there would be smuggling and theft and pretty angry people.

What about the land-owning peasant pheasant munchers Wasn't gout a major concern. Only kidding. Partly. I think each era has it's own concerns. And yes I dare say that in the 50's or 60's there were less concerned with obesity and more concerned with err... growing pot and chillin'

 

[SilverbladeTE]

If we were driving benefit scroungers out of Westminster, first to go would be the corrupt, nepotistic, incompetant traitors in Parliament!

 

[Kati]

What about the land-owning peasant pheasant munchers Wasn't gout a major concern. Only kidding. Partly. I think each era has it's own concerns. And yes I dare say that in the 50's or 60's there were less concerned with obesity and more concerned with err... growing pot and chillin'

in the 40's and 50's people were more conerned about making babies. My grandparents got 16 of those!

 

[Firestormm]

Your right. I was thinking that is an approach that even th pschiatric researchers could have followed if they were interested in understanding the disease better.


That was my point about needing a well defined language to describe features of fatigue. As opposed to a scale where you simply add up question results.

Just noticed you and Alex having this exchange. Has this review affected your views in any way? I refer to the excerpt I posted from the review:

http://forums.phoenixrising.me/index.php?threads/functional-somatic-syndromes-may-be-either-“polysyndromic”-or-“monosyndromic”-peter-denton-white.21181/

Be interested to hear your thoughts:

The future now lies in increasing our understanding of FSS by moving beyond considering symptoms by themselves, and instead concentrating our attention on differentiating FSS sub-phenotypes.

We can do this by using already available biomarkers, such as: sleep–wake circadian rhythms, nocturnal sleep architecture, autonomic nervous system, hypothalamic–pituitary–adrenal axis, cytokine distributions, and central nervous system sensitisation, amongst others, in order to reveal the underlying pathophysiology specific to an individual FSS, and even the underlying endophenotypes [5], [6], [7].

Some links between pathophysiology and aetiology, such as childhood adversity, have already been described [4]. Future genomic studies should also inform both aetiological and pathophysiological pathways as well as the unexplained link with depressive and anxiety disorders [21].

Understanding the relevance of the pathophysiology and endophenotypes to both monosyndromic and polysyndromic functional somatic syndromes will then potentially inform treatments.

From a clinical point of view, assessment of symptom count [14], [22] and a history of both mood disorders and other functional somatic syndromes will inform prognosis and treatment [23].

To our patients' benefit, we have now moved the debate a long way from functional somatic syndromes being considered “all in the mind” [24].

12 November 2012 - From the OT publication: http://www.jpsychores.com/article/S0022-3999(12)00282-6/fulltext

 

[user9876]

As for smoking- talk about the government being in bed with the tobacco industry- if there was no such alliance, cigarettes would be banned, and no one would be smoking- but then that is complicated too, right- there would be smuggling and theft and pretty angry people.

Don't forget that Ken Clarke worked for BAT pushing cigarettes to the third world. On the one hand we have politicians saying poor people shouldn't smoke, drink and eat junk food but on the other we have the companies that back them making the profit from this and spending millions in advertising to do so.

 

[Firestormm]

Don't forget that Ken Clarke worked for BAT pushing cigarettes to the third world. On the one hand we have politicians saying poor people shouldn't smoke, drink and eat junk food but on the other we have the companies that back them making the profit from this and spending millions in advertising to do so.

And happy to take the duty (tax)

 

[alex3619]

Just noticed you and Alex having this exchange. Has this review affected your views in any way? I refer to the excerpt I posted from the review:

http://forums.phoenixrising.me/index.php?threads/functional-somatic-syndromes-may-be-either-“polysyndromic”-or-“monosyndromic”-peter-denton-white.21181/

Be interested to hear your thoughts:

This has been discussed in that thread.