CFS (or ME/CFS or ME) studies where the mean + 1SD for cohort SF-36 PF scores were over 65

[Dolphin]

This is again probably a minority interest.

However, a PACE Trial paper is coming out soon looking at recovery rates (using different definitions for recovery, I think) and I believe the definitions will use the SF-36 physical functioning (PF) scores.

This is the secondary outcome measure for recovery they said they would publish in the published protocol:
http://www.biomedcentral.com/1471-2377/7/6

4. "Recovery" will be defined by meeting all four of the following criteria: (i) a Chalder Fatigue Questionnaire score of 3 or less [27], (ii) SF-36 physical Function score of 85 or above [47,48], (iii) a CGI score of 1 [45], and (iv) the participant no longer meets Oxford criteria for CFS [2], CDC criteria for CFS [1] or the London criteria for ME [40].

However, judging by their response to a FOI request, the PACE Trial investigators don't intend to publish this data.

People will recall that they claimed a score of 60 represented normal physical functioning/that participants physical functioning was "back to normal".

I've chosen 65 as 65 was the entry criteria threshold so I think they are unlikely to use a cut-off point of that or lower.

Other papers also look at "recovery" and "full recovery" so data collected here could be useful for various studies.

Ideally put the entry criteria for the study if you can find it, along with the information they give on mean and SD (or other measures). Indeed, IQR (interquartile ranges would be even better as they could show definitively that around 25% had that score or better).
I'll give an example in my next message.

 

[Dolphin]

In this study:

Influence of Symptom Expectancies on Stair-Climbing Performance in Chronic Fatigue Syndrome: Effect of Study Context.
Heins M, Knoop H, Nijs J, Feskens R, Meeus M, Moorkens G, Bleijenberg G.
Int J Behav Med. 2012 Aug 4.

Patients
Patients between 18 and 65 years who were referred to our tertiary expert centre for cognitive behaviour therapy (CBT) were informed about the study at the start of the standard diagnostic procedure. All patients had been subjected to an extensive medical evaluation, to rule out medical conditions that could explain the fatigue. To be included in the study, patients had to fulfil the Centers for Disease Control and Prevention criteria for CFS [1]. These criteria encompass severe, medically unexplained fatigue, lasting at least 6 months and resulting in severe limitations in daily functioning, next to four out of eight case-defining symptoms. Severe fatigue was defined as a score of at least 35 on the subscale ‘fatigue severity’ of the checklist individual strength (CIS) [13], and severe functional limitations were defined as a total score of at least 700 on the Sickness Impact Profile [15]. In light of the physically demanding nature of the stair-climbing task, all subjects with heart, knee or back problems were excluded from the study. All participants gave written informed consent before participation. The study was conducted in accordance with the Helsinki declaration 1975, as revised in 2000, and the study protocol was approved by the local ethical committee.

1. Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group. Ann Intern Med. 1994;121(12):953–9.

13. Vercoulen JH, Swanink CM, Galama JM, et al. The persistence of fatigue in chronic fatigue syndrome and multiple sclerosis: development of a model. J Psychosom Res. 1998;45(6):507–17.

15. Bergner M, Bobbitt RA, Pollard WE, Martin DP, Gilson BS. The sickness impact profile: validation of a health status measure. Med Care. 1976;14(1):57–67.

In this study,
SF-36 physical functioning
Mean (SD): 59.7 (20.6)
i.e. Mean + 1SD = 81.3 (approx.)

Interestingly, two of the authors were Hans Knoop and Gijs Bleijenberg who claimed in an editorial in the Lancet that the PACE Trial authors used strict recovery definition (SF-36 PF score of 60 or more, Chalder Fatigue score of 18 or less). Papers take a long time to get published, so I wouldn't be surprised if they had the data from this study when they wrote that.

 

[PoetInSF]

Thanks for posting. It may be of minority interest, but it is actually a major interest to me. I'm anxiously waiting for the next PACE result to see if the GET group has made any stride on the 6 min walk test. I remember them doing about 10% better than the control after 1 year, but that could have been due to the initial reconditioning of patients who have been severely out of shape even within their CFS limits.

SF-36 score of 60 was such a BS. I now score 75-80 and yet I still can't safely walk more than 350 m in 6 min without triggering PEM. I might agree to 85, but even that is a suspect. To me, the best measure of recovery is being able to walk 500m in 6min, a normal speed for my age.

 

[Gijs]

“There are three kinds of lies: lies, damned lies, and statistics”, Benjamin Disraeli.
White et. al., have worked verry hard to uprate there outcomes of ‘recovery’.
1. The population is not representatieve because the patiënts were able to travel to therapists (much patiënts can’t),
2. Changing protocol after research is scientifcly not done,
3. White e.a. suits are standard for recovered CFS patients in the following objective way:” The mean (SD) scores for a demographically representative English adult population were 86.3 (22.5) for males and 81.8 (25.7) for females (Bowling et al 1999) . We derived a mean (SD) score of 84 (24) for the whole sample, giving a normal range of 60 or above for physical functioning”.
White e.a. use a score according to their representative of the general population (60) but without a breakdown and sufficient to take into account age, which varies in proportion and decreases significantly with age according to table 3 (Bowling et al 1999) http://jpubhealth.oxfordjournals.org/content/21/3/255.full.pdf+html
The minimum score or above for normal physical functioning according table 3 presented data (Bowling et al 1999) compared with the norm of White e.a. but now taking statistically correct age into account gave us the following results: (16-24) score: 83.4 (25-34) score: 81 (35-44) score: 79.9 (45-54) score: 66.3 (55-64) score: 51.7
‘’The average age of the participants in the study of White et al, 38, 77% of them were female and 93% were of white ethnicity’’. The average age of CFS patients is 38. You can see in table 3 that the studied group of CFS patients have a mean age of 38 and falls in category age (35-44 years) tabel3. The minimum score or above for normal physical functioning for this group (35-44) is a score of 79.9. This is much higher then the score 60 stated by white e.a.
In summary: You can see that the average score in the rise of the age significantly decreases. A certain group of age may thus greatly affect the outcome. According to White et al 2013, 22% of CFS patients after following cognitive behavioral therapy restored. These researchers use a minimum score or above 60 physical functioning Rand-36 in general 84 (24). This data was not broken down into different groups of age. The average age in the study by White e.a. was 38 years. This requires a minimum score or above 79.9 for physical functioning according to the presented dat table 3 (Bowling et al 1999). The norm of recovery need to be adjusted for each group by age. The percentage of CFS patients (22%) that meets the standard definition of recovery state to discussion.
White e.a. would have to make a breakdown into different age groups and adjust the standard recovery norm for these groups by presenting the data.