Edited video of Wessely/White etc on youtube - anyone have the original?

Dolphin

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Not quite sure what this video's for, but it turned up while googling XMRV:

http://www.youtube.com/watch?v=Dd_LpEoVEDo

Does anyone know where I can watch the unedited version?

Ta.
They are from the RSM conference on CFS, April 2008. They can be watched at:
http://www.rsm.ac.uk/chronicfatigue08/index.php

I tend to read papers more than watch videos so can't comment on the Simon Wessely one but I know that Peter White was quite misleading with quite a lot of what he said including statistics/research findings he presented.

On that page, in case anyone hasn't seen it, is a lecture http://rsm.mediaondemand.net/player.aspx?EventID=1337 by Alastair Miller, the new Principal Medical Advisor of Action for ME.
 

Esther12

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They are from the RSM conference on CFS, April 2008. They can be watched at:
http://www.rsm.ac.uk/chronicfatigue08/index.php

I tend to read papers more than watch videos so can't comment on the Simon Wessely one but I know that Peter White was quite misleading with quite a lot of what he said including statistics/research findings he presented.

On that page, in case anyone hasn't seen it, is a lecture http://rsm.mediaondemand.net/player.aspx?EventID=1337 by Alastair Miller, the new Principal Medical Advisor of Action for ME.
Excellent. Thanks a lot for that.

I like these sorts of things because you can hear their tone and expression. Their lovely little jokes about CFS patients are normally such fun too.

I wonder if there's ever been a study on the personality types of those drawn to CFS research?
 

Esther12

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The link above no longer works, but Mark posted links to the talks which are still available here: http://forums.phoenixrising.me/index.php?threads/phoenix-rising-video-library.4980/#post-110739

I've transcribed the end of White's talk, which just struck me as interesting in relation to spin post-PACE:

"And they also said at that conference [to define criteria], emphatically, that it is 'organic' (what does that word mean), incurable, neurological disease, okay. Now they may be right, they may be wrong, but what message does this give our patients? Now here is the latest edition, that you've seen outside, of ME Essential. Now there are two levels to understand this picture: one, brave attempts of a woman to cope with a severe, disabling, incurable disease. Trying to live a normal life despite being ill. But what message does that give our patients, when we say to them 'you have an incurable neurological disease'? Is it a more useful a message for our patients to say that, or to say 'Graded Exercise Therapy is a safe and effective treatment if it's done properly'? Because the two statements cannot, at this moment, be joined together.


And here's the evidence. A study again from GPRD of the effect of a doctor saying 'you've got ME' to patients compared to saying you've got 'CFS'. What we found was those labelled ME their illness lasted longer than those labelled having CFS.Those ME patients have more consultations both in general and specifically for fatigue with their general practitioner, in spite of the fact that before diagnosis, because this was a longitudinal study, there was no difference in CFS and ME, in consultation rates for fatigue or for general consultation rates - suggesting that the diagnostic labels we use had meaning not just for us, but for our patients, particularly when they look on the internet for what ME and CFS means. We have to be very cautious in using these labels without adequate explanation for what they really mean, and how we're going to help our patients.

So I'm going to conclude, to keep John happy:

CFS/ME exists. No doubt in my mind. It's hard to define. I would commend to you the broad based definitions rather than the ones with lots of symptoms. Both heterogeneity and comorbidity should be addressed. Both in treatment and when looking at aetiology.And it's very important that we are clear of what we mean when we give a diagnosis to our patients. Thank you very much for listening.
http://rsm.mediaondemand.net/player.aspx?EventID=1291

Charles Shepherd summarised the whole talk here:

http://meagenda.wordpress.com/2008/05/15/mea-summary-of-prof-peter-d-whites-rsm-presentation/

ME Agenda did a transcript of the first part of the talk here: http://meagenda.wordpress.com/2009/...iscouraging-rsm-conference-from-using-icd-10/

White's slides used to be online here: http://www.roysocmed.ac.uk/chronicfatigue08/white.pdf but I can't find them anywhere now.
 
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Esther12

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The full text for the paper on labelling cited by White is available, I know Wessely likes this paper too, and has passed it on to journalists to illustrate the danger of the 'ME' label. To me, it seems that they don't really address the possibility that those patients who believe that there fatigue is less serious/a result of identifiable and hopefully transitory psychosocial factors may be more likely to end up with the CFS label... and that these illness beliefs might serve to reflect reality rather than create it.

The prognosis of different fatigue diagnostic labels: a longitudinal survey
  1. William T Hamiltona,
  2. Arlene M Gallagherb,
  3. Janice M Thomasc and
  4. Peter D Whiteb
Abstract
Background. Several different diagnostic labels exist for the fatigue syndromes, including chronic fatigue syndrome (CFS), myalgic encephalomyelitis (ME) and postviral fatigue syndrome (PVFS). An allied condition is fibromyalgia. No study has examined prognostic differences across these different labels.

Objective. To compare the prognoses of patients labelled with different fatigue syndromes in primary care.

Methods. We performed a longitudinal survey, using electronic records from the General Practice Research Database. All 18 122 patients diagnosed by their GP with a fatigue syndrome from 1988–2001 with a minimum of one year of records after diagnosis were collated into four groups: CFS, ME, PVFS and fibromyalgia. CFS and ME were combined for the main analysis as no code for CFS was available until 1995. The length of illness was calculated as the interval between the diagnosis and the last recorded fatigue symptom, expressed as days per year, to account for differing lengths of record after diagnosis.

Results. Patients with CFS/ME combined had a worse prognosis (median length of illness 80 days per year; interquartile range 0–242) than fibromyalgia (51; 0–244) or PVFS 0 (0–108), a significant difference, P < 0.001. In a subgroup analysis, ME had a worse prognosis (median length of illness in days per year 106; interquartile range 0–259) than CFS (33; 0–170), P < 0.001, in spite of a better course before diagnosis. Secondary outcome measures were consistent with these results.

Conclusion. There were important differences in outcome between the various fatigue labels, with ME having the worst prognosis and PVFS the best. This could be an adverse effect of the label ME itself. Alternatively, patients who are destined to have a worse prognosis may preferentially attract the ME label. Our data support the first interpretation.
http://fampra.oxfordjournals.org/co...eec0ec08e043a8b23c40f779&keytype2=tf_ipsecsha
 

A.B.

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This doesn't sound like patients were randomly assigned either a CFS or ME label. The simple explanation would be that the more severely ill are more likely to receive a diagnosis of ME than CFS. As usual, the claims by the BPS crowd evaporate upon closer inspection. It looks like they did the following:

1. Arbitrarily label several conditions as "fatigue syndrome".
2. Look for differences between these conditions.
3. Declare that any differences found are due to biopsychosocial factors, and not due to pathology.
 
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biophile

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In addition to what A.B. said, I have doubts over the accuracy of GP records.

Once or twice I saw CFS and [depression] used interchangeably on my records, although that may have been a sloppy oversight since some form of depression was a temporary secondary diagnosis, but a variation of PVFS was the first and primary diagnosis and the most commonly used term over time. But it shows how loosely terms are used by GPs.

Similarly, I doubt my records have accurately captured all the significant symptoms over the years. The CCC and ICC has a good description of symptoms, but from what I remember, medical records are rarely as descriptive. I care more about accurate characterization of symptoms than diagnostic labels.

Re this study, I wonder what 'biopsychosocial' factors are associated with spinning/promoting results beyond the evidence?
 
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user9876

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This doesn't sound like patients were randomly assigned either a CFS or ME label. The simple explanation would be that the more severely ill are more likely to receive a diagnosis of ME than CFS. As usual, the claims by the BPS crowd evaporate upon closer inspection. It looks like they did the following:

1. Arbitrarily label several conditions as "fatigue syndrome".
2. Look for differences between these conditions.
3. Declare that any differences found are due to biopsychosocial factors, and not due to pathology.
It may also be a function of the GPs attitudes. The label a GP uses may indicate the treatment options considered and how they act with a patient. This intern may reflect on the likelihood of a patient returning to see the GP and hence whether the patient is perceived in the notes to have a continuing problem.
 

Cheshire

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Once or twice I saw CFS and "dysthymia" used interchangeably on my records
How could that be??? That's just total nonsense! Were you diagnosed with both or did the doctors mixed up both conditions as being the same?
 

biophile

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How could that be??? That's just total nonsense! Were you diagnosed with both or did the doctors mixed up both conditions as being the same?
If I recall, I may have been diagnosed with both at one stage (CFS primary, depression or dysthymia secondary), but at least once when going through some of the records (not his own records, but ones he wrote for me for other purposes), I saw some variant of depression used instead. I don't like to complain too much because he was generally helpful, but he did have an obvious biopsychosocial stance and viewed CFS and depression with heavy overlap and probably just made a mistake. I doubt busy GPs pay too much attention to details if they think the symptoms are ambiguous or non-specific.
 

Esther12

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This doesn't sound like patients were randomly assigned either a CFS or ME label.
Not in the paper... it does rather sound like that when White says:

And here's the evidence. A study again from GPRD of the effect of a doctor saying 'you've got ME' to patients compared to saying 'you've got CFS'. What we found was those labelled ME their illness lasted longer than those labelled having CFS.Those ME patients have more consultations both in general and specifically for fatigue with their general practitioner, in spite of the fact that before diagnosis, because this was a longitudinal study, there was no difference in CFS and ME, in consultation rates for fatigue or for general consultation rates - suggesting that the diagnostic labels we use had meaning not just for us, but for our patients, particularly when they look on the internet for what ME and CFS means.
Surely it's not that White would try to present his work as more valuable than it is in presentations though!?!
 
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biophile

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Apart from the possibilities mentioned above ...

Seeing how common "chronic fatigue" is, and if diagnoses of ME or CFS are handed out arbitrarily, there is bound to be misdiagnoses. ME is less common than CFS, and telling someone with idiopathic fatigue that they have "ME" may be as inappropriate as telling someone that they have MS. Telling patients they have a serious organic disease may influence some of them to seek more consultations and expect medical care irrespective of what illness they have. While telling patients they have a (psychosomatic or idiopathic) fatigue syndrome may influence them to decrease consultations and report less problems after reading all the dismissive psychobabble on the internet.

Illness duration was simply derived from the "last recorded fatigue symptom".
I haven't seen a doctor and reported a "fatigue symptom" for a while, so I must be cured? Sweet.
 

biophile

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In relation to what I said about a psychobabble diagnosis affecting patients reporting of symptoms:

This research found strong evidence of gender-biased diagnosing. It also found that 1) many women reported experiencing sex discrimination in a doctor-patient relationship, and over half of women had discontinued seeing a doctor for this reason, 2) a small phenomenon of "doing credibility" was found in that patients, mostly female, reported downplaying severity of symptoms in dialog with their doctor in fear of complaining or appearing "irrational," and 3) women were found to suffer traumatic and health-crippling experiences, sometimes ending up in the emergency room needing surgery or suffering for years with debilitating undiagnosed medical conditions, as a direct consequence of their symptoms being mislabeled as psychosomatic.
http://scholar.oxy.edu/sociology_student/5/
 

taniaaust1

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Now there are two levels to understand this picture: one, brave attempts of a woman to cope with a severe, disabling, incurable disease. Trying to live a normal life despite being ill. But what message does that give our patients, when we say to them 'you have an incurable neurological disease'? Is it a more useful a message for our patients to say that, or to say 'Graded Exercise Therapy is a safe and effective treatment if it's done properly'?
umm so I wonder if Peter White would also think its better to give an incurable cancer patient the message of GET rather then tell them they are incurable and have cancer. I think not. His logic makes no sense at all to me.