We are 'b****ards who don't want to get better'

[taniaaust1]

In regards to the quote in #20

Things arent fitting.. maybe T. Chalder put out two different fatigue scales? or is there some deception going on with what was said when they said in studies report with they "scored 4 or more on the 11-item Chalder Fatigue scale" to participate in the study?

I just tried to look up the Chalder Fatigue Scale as I wanted to know the exact questions asked, to see just how lax this studies selection of of its participants was, but from the looks of it that fatigue scale hasnt got 11 items but rather 14 .. so rather was it they only had to score 4 or more on a 14 item scale? http://www.sciencedirect.com/science/article/pii/002239999390081P

 

[biophile]

taniaaust1 wrote: I just tried to look up the Chalder Fatigue Scale as I wanted to know the exact questions asked, to see just how lax this studies selection of of its participants was, but from the looks of it that fatigue scale hasnt got 11 items but rather 14 .. so rather was it they only had to score 4 or more on a 14 item scale?

In the full text of Chalder et al 1993 (http://wwwcache1.kcl.ac.uk/content/1/c6/01/47/68/PDF-109.pdf) they list the original 14 items/questions, perform a [Relative Operating Characteristics] (ROC) analysis and then eliminate 3 items accordingly. Below are the original list of 14 items, with strikeout through the 3 items that were eliminated (items # 5,12,14):

(Physical symptoms)
1. Do you have problems with tiredness?
2. Do you need to rest more?
3. Do you feel sleepy or drowsy?
4. Do you have problems starting things?
[STRIKE]5. Do you start things without difficulty but get weak as you go on?[/STRIKE]
6. Are you lacking in energy?
7. Do you have less strength in your muscles?
8. Do you feel weak?
(Mental symptoms)
9. Do you have difficulty concentrating?
10. Do you have problems thinking clearly?
11. Do you make slips of the tongue when speaking?
[STRIKE]12. Do you find it more difficult to find the correct word?[/STRIKE]
13. How is your memory?
[STRIKE]14. Have you lost interest in the things you used to do?[/STRIKE]

However, this is somewhat at odds with the 11-item CFQ on p162 of the complete unpublished PACE protocol (http://www.meactionuk.org.uk/FULL-Protocol-SEARCHABLE-version.pdf) where one of the eliminated items (#12) apparently replaces one of the remaining questions after the ROC analysis performed in Chalder et al 1993 (item #10: "Do you have problems thinking clearly?"):

Do you have problems with tiredness?
Do you need to rest more?
Do you feel sleepy or drowsy?
Do you have problems starting things?
Do you lack energy?
Do you have less strength in your muscles?
Do you feel weak?
Do you have difficulty concentrating?
Do you make slips of the tongue when speaking?
Do you find it more difficult to find the correct word?
How is your memory?

Don't know what happened there, PubMed does not mention erratum for Chalder et al 1993. Perhaps, as a PI of the PACE Trial, Chalder decided item #12 was better than #10?

 

[PhoenixDown]

...It goes well beyond the evidence in over-emphasising the role of deconditioning, and I'm not surprised that 'educating' nurses in this manner would lead to them hating some of their patients when they failed to 'recondition' in the way that would be expected.

I agree with most of what you say, you made some excellent posts in the Bart's Therapy thread, However: They do not deserve a "get out of jail free" card. They have above all else, a duty as human beings, to question their orders for gross stupidity, carelessness, and irresponsibility. Nobody pointed a gun at their heads. They failed that duty. They failed those patients.

 

[Esther12]

Thanks PhoenixDown.

However: They do not deserve a "get out of jail free" card. They have above all else, a duty as human beings, to question their orders for gross stupidity, carelessness, and irresponsibility. Nobody pointed a gun at their heads. They failed that duty. They failed those patients.

They don't escape responsibility, but the more that I've read of what was being claimed about CFS and how to treat it, particularly from the time when I first got ill, the more understanding I've become of those medical staff who have treated CFS patients badly. Being unsurprised, or understanding of something is far from saying that I find it acceptable.

 

[Dolphin]

They don't escape responsibility, but the more that I've read of what was being claimed about CFS and how to treat it, particularly from the time when I first got ill, the more understanding I've become of those medical staff who have treated CFS patients badly. Being unsurprised, or understanding of something is far from saying that I find it acceptable.

Yes, I think those involved in trials and, in general, experts who have time to follow the literature and know all the data that don't fit with a lot of the data, are the most responsible for hype and misrepresentation of the illness.

 

[SilverbladeTE]

"Just obeying orders" got folk hanged 70 years ago, but alas, that lesson has not been learned.
As I keep saying, folk in groups suck cephalopod naughty bits!

Onc eyou implant a suggestion that a "type of person" is cheating, vile, low, debased or whatever, you can eaisly sway opinion.
Peopel are very wary of being conned, everyone HATES being taken for a fool, made to look stupid in public
Hence, making the disabled look like "cheaters/con artists" is a great way to dehumanize them without appearing to do so.

Today's leprosy, that's what it is.

Sorry to go on about this part of the issue so much, but it is absolutely crucial
It's classic, pernicious, diabloically evil "psychological warfare", and deadly bloody dangerous.
The pen that writes a well crafted, malicious lie, is mightier than the sword

 

[Enid]

Is the likes of Chalder (et al) in their disregard of biology (research/findings) of any use/consequence - clutching straws this lot probably/undoubtedly self interest regardless. Or why play (don't ask me I'm not into psychoanalysis).

But there is hope - 4 junior Docs at the end of my bed in A & E schooled in "imagined" illness and producing a psychiatrist came eventually to stand with sort of sorry "you know when you are ill". (B..... passing out at the time)

Physicians heal yourselves. (So as not to misgiude too).

 

[biophile]

In a previous post (#22) I highlighted the discrepancies between the 11-item Chalder Fatigue Scale/Questionnaire in the original Chalder et al 1993 paper versus the one which appeared in the complete unpublished protocol of the PACE Trial. The Lancet has since published a clarification on the issue so now we know what happened (I don't claim credit for the coincidence):

PACE trial clarification

T Chalder [a] (trudie.chalder@kcl.ac.uk), M Sharpe [a], PD White [a]

The Lancet, Volume 379, Issue 9816, Page 616, 18 February 2012 doi:10.1016/S0140-6736(12)60267-0

http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(12)60267-0/fulltext

In the PACE trial,[1] we stated that we used the Chalder fatigue questionnaire.[2] We would like to clarify that we used an updated version of the scale.[3] The item Do you have problems thinking clearly? was replaced with Do you find it more difficult to find the correct word? This updated version has slightly better reliability than the original scale.[2][3] In practice, either item can be used without altering the interpretation of the scale.[2]

TC has done consultancy work for insurance companies and has received royalties from Sheldon Press and Constable and Robinson. MS has done voluntary and paid consultancy work for government and for legal and insurance companies, and has received royalties from Oxford University Press. PDW has done voluntary and paid consultancy work for the UK Departments of Health and Work and Pensions and Swiss Re (a reinsurance company).

References

[1] White PD, Goldsmith KA, Johnson AL, et al. Comparison of adaptive pacing, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet 2011; 377: 823-836. http://www.ncbi.nlm.nih.gov/pubmed/21334061

[2] Chalder T, Berelowitz G, Hirsch S, et al. Development of a fatigue scale. J Psychosom Res 1993; 37: 147-153. http://www.ncbi.nlm.nih.gov/pubmed/8463991

[3] Cella M, Chalder T. Measuring fatigue in clinical and community settings. J Psychosom Res 2010; 69: 17-22. http://www.ncbi.nlm.nih.gov/pubmed/20630259

[a] Department of Psychological Medicine, King's College London, London SE5 9RJ, UK.