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GETSET (white) in Lancet 22/06/17

CFS_for_19_years

Hoarder of biscuits
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Can someone please point me to the actual SF-36 physical function subscale questionnaire itself. I've scoured the web using its full reference, abbreviated, etc, and none of the hits actually get me to the questionnaire itself, albeit zillions of stuff referencing it. Very frustrating!

You can get the details from this ME Analysis video:

The 10 activities of sf-36 are: 1.Vigorous activities, such as running, lifting heavy objects, participating in strenuous sports. 2.Moderate activities, such as moving a table, pushing a vacuum cleaner, bowling or playing golf. 3.Lifting or carrying groceries. 4.Climbing several flights of stairs. 5.Climbing one flight of stairs. 6.Bending, kneeling or stooping. 7.Walking more than a mile. 8.Walking several blocks. 9.Walking one block. 10.Bathing or dressing yourself.
 
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Dolphin

Senior Member
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17,567
Can someone please point me to the actual SF-36 physical function subscale questionnaire itself. I've scoured the web using its full reference, abbreviated, etc, and none of the hits actually get me to the questionnaire itself, albeit zillions of stuff referencing it. Very frustrating!
I think this is a useful document. It was obtained from a freedom of information act request. It lists all the questions for the questionnaires used in the PACE trial. A lot of them are also used in other studies.
http://evaluatingpace.phoenixrising.me/PACE_Protocol.pdf
 

Tom Kindlon

Senior Member
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Maintaining exercise

It can be explained that in order for the body to continue strengthening, and for changes to be maintained, exercise should form a regular part of their lives from here onwards. The long-term benefits of exercise for prevention of CFS/ME specifically,41,42 and other diseases in general can be emphasised.43,44
I don't know what references 41 and 42 are (the references don't go up that far in the manual), but there is not a good evidence for this claim. Also even if something could prevent CFS/ME, it becomes a different story when you already have it.

Here is a comment I wrote before on another paper co-written by Peter White:

Accumulating evidence that CFS patients were actually more active on average than controls before becoming ill


The main finding in this study is that "patients with chronic, unexplained fatigue rated themselves as more active before their illness (p < 0.001)" and that "these differences remained significant for the subset of patients who met strict criteria for chronic fatigue syndrome or fibromyalgia"[1]. The authors then spend a lot of time speculating about whether this could have been an "overestimation of previous activity" and giving the "altered perception" hypothesis.

Given that they only had self-report data to go on, it is interesting to read a recent prospective population study on the illness[2]. It followed 4779 people from birth for the first 53 years of their lives. At age 53, 34 reported a diagnosis of CFS. Amongst other things, it found that "increased levels of exercise throughout childhood and early adult life and a lower body mass index were associated with an increased risk of later CFS." As it was a prospective study, there was no issue of recall bias. It also wasn't simply self-rated, as it also involved reporting by a teacher at age 13. Also they used the subject's BMI index - patients who went on to have CFS at age 53 had a (statisically significant) lower BMI than those who did not go on to develop CFS at ages 36 and 43 (before they had CFS). The authors say this "this may provide some indirect but objective evidence of increased levels of activity at these ages, especially as this difference had resolved by the age of 53 years" (when the people with CFS were no longer more active).

In the current study[1], the authors say "the only prospective cohort study of risk factors for CFS found that sedentary behavior at 10 years of age doubled the risk of self-reported CFS in adulthood"[3]. I thought I would give more information on that finding as it only related to a small percentage of the "CFS/ME" patients and doesn't show that on average patients were more inactive: in response to the question, about the amount of sport played in spare time at 10 years, 16% of the people who ever had CFS/ME by age 30 were in the "never or hardly ever" category compared to 8% in the people who didn't go on to have CFS/ME (so 8% more than expected - but it still meant that 84% in the "sometimes" and "often" categories). However the authors of the study[3] didn't combine this data in some way with a question on sports played within school: for the category "Played >2 hours/week of sport at school at 10 years", 52% of those who ever had CFS/ME by age 30 were in this category compared to 44% of those who never had CFS/ME by age 30. The unadjusted OR for this at 1.4 nearly reached statistically significance (95% confidence intervals: 0.9 to 2.2). Some sort of combination of the two pieces of data would have been preferable - a person's body doesn't distinguish between activity done within schools hours and in their spare time.

In the current study[1], the authors point out that their "findings are congruent with those of 3 retrospective studies reporting that CFS patients perceived themselves as more active before their illness began than healthy controls"[4-6]. They also said that "the high levels of physical activity reported by patients have been corroborated by their spouses, partners, or parents."[7]

With all this evidence from various sources about pre-morbid levels, researchers perhaps need to start showing more evidence before they will convince many of us of any speculative theories about CFS patients misperceiving how much activity and exercise they used to do.

References:

[1] Smith WR, White PD, Buchwald D: A case control study of premorbid andcurrently reported physical activity levels in chronic fatigue syndrome. BMCPsychiatry 2006, 6:53.http://www.biomedcentral.com/1471-244X/6/53

[2] Harvey SB, Wadsworth M, Wessely S, Hotopf M: Etiology of Chronic FatigueSyndrome: Testing Popular HypothesesUsing a National Birth Cohort Study. Psychosom Med. 2008 Mar 31

[3] Viner R, Hotopf M: Childhood predictors of self reported chronic fatiguesyndrome/myalgic encephalomyelitis in adults: national birth cohort study.BMJ 2004, 329:941.http://www.biomedcentral.com/pubmed/15469945

[4] Riley MS, O'Brien CJ, McCluskey DR, Bell NP, Nicholls DP: Aerobic workcapacity in patients with chronic fatigue syndrome. BMJ 1990, 301:953-6.

[5] Van Houdenhove B, Onghena P, Neerinckx E, Hellin J: Does high"action-proneness" make people more vulnerable to chronic fatigue syndrome?A controlled psychometric study. J Psychosom Res 1995, 39:633-40.

[6] MacDonald KL, Osterholm MT, LeDell KH, White KE, Schenck CH, Chao CC,Persing DH, Johnson RC, Barker JM, Peterson PK: A case-control study toassess possible triggers and cofactors in chronic fatigue syndrome. Am J Med1996, 100:548-54.

[7] Van Houdenhove B, Neerinckx E, Onghena P, Lysens R, Vertommnen H:premorbid "overactive" lifestyle in chronic fatigue syndrome andfibromyalgia: an etiological relationship or proof of good citizenship? JPsychosom Res 2001, 51:571-6.
 

Dolphin

Senior Member
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17,567
(SOAP notes, as used in normal physiotherapy practice as recommended by the Chartered Society of Physiotherapy, will incorporate Subjective and Objective data, Analysis/clinical reasoning and will record therapy Plans).
This is a new acronym for me. Anyway I thought it was interesting that it refers to objective data.
 

Dolphin

Senior Member
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17,567
A letter will already have been sent to the participant’s GP informing them of their involvement in the GETSET trial, and that they have been randomised to GES.
Possibly a minor point. I recall people mentioning before that in a scenario like this participants might be concerned about wanting to appear compliant for their GP which might conceivably lead them to say it helped.
 

Dolphin

Senior Member
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17,567
1. BENEFITS OF EXERCISE

Regular exercise has many known benefits to people of all ages and with many differing medical conditions. Exercise of an appropriate duration, intensity, and regularity is known to affect the following in a positive way:

Cardiovascular System
Your heart, lungs, and circulation system work more efficiently, making your body more able to deal with the demands of daily activities. The improvements in the cardiovascular system can reduce your risks of certain diseases e.g. heart disease.

Strength
Exercises that challenge your muscles improve the strength of individual muscles and muscle groups, making some daily tasks easier, e.g. climbing stairs, hanging out the washing.

Endurance
Exercises that are prolonged enable you to do more than you could previously, e.g. walk further, swim further, do the housework for longer.

Flexibility
Many exercises, especially those involving stretches (e.g. Yoga), can improve the flexibility of your joints, ligaments, and muscles helping you to move easier with less stiffness.

Balance
Certain exercises can improve your balance, e.g. dancing, standing on one foot.

Immune system
The right amount of exercise maintains and improves your immune system, essential for fighting viruses and infections.

Sleep
A good night’s sleep is essential in order to feel refreshed and wake up feeling better. Exercise improves slow wave sleep, during which hormones are released to repair your muscles.

Increase in Bone Density
Exercises that involve putting weight through your legs (known as weight bearing exercises) help increase and maintain bone density, reducing your risk of broken bones and osteoporosis (‘brittle bones’).

Thinking ability (cognition)
Graded Exercise Therapy for CFS/ME has been shown to improve thinking ability, or cognition.

Well – being and mood
Exercise releases your own natural hormones in your body that can make you feel more relaxed and happier. It can therefore be of particular help for people affected by depression or anxiety.

Putting stress hormones to good use
Various natural substances are released into your bloodstream at times of stress, in order to prepare your body and muscles for physical action. Sometimes we are not physically active at times of stress, which can lead to certain symptoms, e.g. dizziness, muscle tension. Exercise can be an effective and positive way of utilising the physical preparation and helping to control certain physical symptoms.

Weight loss
If you are overweight, aerobic exercise is an essential component to successful weight loss.

Body Image
Exercise can make you feel better about your body.

Confidence
Participating in exercise can improve your confidence, especially if you are learning something new and challenging, or returning back to an activity you previously enjoyed. A sense of achievement is important to everyone.

Social Contact
Exercise can be a good way of establishing or re-establishing social contact.

For only one of these is CFS mentioned. And I'm not sure there is good evidence that graded exercise therapy helps thinking ability in CFS/ME.

Exercise might have an opposite effect in CFS e.g. it might interfere with sleep and it doesn't necessarily increase well-being and mood.

It says exercise is essential for weight loss. Over the last 2.5 years I have lost a considerable amount of weight without exercising. Plenty of people do.
 
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CFS_for_19_years

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This is a new acronym for me. Anyway I thought it was interesting that it refers to objective data.
SOAP refers to notes made during a clinic visit to a doctor or type of therapist, i.e.

S(Subjective): Patient complains of a sore throat.

O(Objective): fever, red throat (or whatever the correct doctor-speak is)

A(Analysis): Upper respiratory infection

P( Plan): Rest, gargle with salt water, return to clinic in two weeks if not improved.

From physiotherapy notes that you mentioned, they would be looking at the subjective and objective notes that were made.
 
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I've lost 6 kg with diet over the last 9 months, no exercise whatsoever.
Encouraging, and well done.
As for exercise preventing CFS - I was going to the fitness studio 3x a week, cycling, cross-training, did lots of it, but CFS arrived anyway.
Seems to be typical of many who get ME. My wife was very active, and I believe Whitney Dafoe was amazingly active (@Janet Dafoe (Rose49).
 
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I think this is a useful document. It was obtained from a freedom of information act request. It lists all the questions for the questionnaires used in the PACE trial. A lot of them are also used in other studies.
http://evaluatingpace.phoenixrising.me/PACE_Protocol.pdf
Many thanks. I also concluded it forms questions 3 to 12 of the SF-36, as per:-

https://www.rand.org/health/surveys_tools/mos/36-item-short-form/survey-instrument.html

From the information you have just provided, this confirms it.
 
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You can get the details from this ME Analysis video:

The 10 activities of sf-36 are: 1.Vigorous activities, such as running, lifting heavy objects, participating in strenuous sports. 2.Moderate activities, such as moving a table, pushing a vacuum cleaner, bowling or playing golf. 3.Lifting or carrying groceries. 4.Climbing several flights of stairs. 5.Climbing one flight of stairs. 6.Bending, kneeling or stooping. 7.Walking more than a mile. 8.Walking several blocks. 9.Walking one block. 10.Bathing or dressing yourself.
Excellent. Many thanks.
 
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The 10 activities of sf-36 are: 1.Vigorous activities, such as running, lifting heavy objects, participating in strenuous sports. 2.Moderate activities, such as moving a table, pushing a vacuum cleaner, bowling or playing golf. 3.Lifting or carrying groceries. 4.Climbing several flights of stairs. 5.Climbing one flight of stairs. 6.Bending, kneeling or stooping. 7.Walking more than a mile. 8.Walking several blocks. 9.Walking one block. 10.Bathing or dressing yourself.
Bearing in mind that for each of these questions there are only 3 possible answers (Limited a lot, Limited a little, or Not limited at all), this is such a lot of hogwash (my wife's description).
  • For my wife some of the answers are indisputably Limited a lot. That is the least ambiguous bit.
  • For Q2 this is so mis-representative, and the chances of getting a meaningful answer are low. On a good day/hour/minute, for a while my wife can and does do the vacuuming. Moving a table ... what the hell does that mean?! A small coffee table? An oak dining table? And bowling is a completely different kind of activity involving balance, coordination and sharply spiking energy demand. All used as examples for the same question. People will be confused how to answer this, and will then be heavily influenced by any 'guidance' the clinician may offer. This questionnaire was obviously designed by a fit person having false beliefs they knew what they were on about.
  • For my wife some of the answers would only sensibly fit somewhere between Limited a lot, and Limited a little, but no answer is available for that, so any answers will inevitably be biased away from that. And if you have been pumped up with lots of positive thinking bullsh*t (I do believe in +ve thinking, but not with a view to biasing outcomes!) the bias will inevitably be towards the lesser extreme.
  • For anyone with ME the questionnaire will render significantly different results according to whether someone like my wife is caught on a high or a low. Yes, she can and does do the vacuuming, but not if she has been doing something else beforehand. If she is in recovery mode she couldn't possibly do it. And even that is not entirely clear as to what component is attributable to physical function - she feels like a wet rag, but also feels thoroughly ill anyway.
Other than all that I don' see a problem with it :rolleyes:.
 
Messages
2,391
Location
UK
I think this is a useful document. It was obtained from a freedom of information act request. It lists all the questions for the questionnaires used in the PACE trial. A lot of them are also used in other studies.
http://evaluatingpace.phoenixrising.me/PACE_Protocol.pdf
7.3 Exclusion criteria
...
3. Patients who are considered by the RN in discussion with their centre leader to be
unable to do one or more of the trial therapies or to complete all trial measures ...
Like a lot of people with ME then.
 
Messages
2,391
Location
UK
I think this is a useful document. It was obtained from a freedom of information act request. It lists all the questions for the questionnaires used in the PACE trial. A lot of them are also used in other studies.
http://evaluatingpace.phoenixrising.me/PACE_Protocol.pdf
7.4.5 Eligibility assessment and consent for assessment — visit 1 (research
nurse)
All of the following eligibility criteria must be fulfilled for the patient to participate:
...
At the end of this visit the research nurse will give the participant the further baseline self
report questionnaires to complete at home and return at visit 2. S/he will also fit the
actometer to the patient with an appropriate explanation and ask them to wear it until
return on visit 2. After visit 1 the research nurse will discuss the patient's potential
eligibility with the centre leader.
7.4.6 Eligibility assessment and consent for trial — visit 2 (research nurse)
At visit 2 to the RN (after one week) the patient will return the actometer (see section
7.4.6). ...
[My bold]

These are the only two references to use of an actometer I can find in the whole document, and give no clue what they were or were not used for. They seem to play no part in the inclusion criteria at all, but I have my suspicions about exclusion. I have no way of knowing, but it is possible that this one objective measurement could have been used clandestinely as an exclusion criterion, if the RN 'decided' the actometer readings indicated the person would meet:-
7.3 Exclusion criteria
...
3. Patients who are considered by the RN in discussion with their centre leader to be
unable to do one or more of the trial therapies or to complete all trial measures ...
So the inclusion criteria were 100% subjective! I'd not quite twigged that the Oxford criteria is wholly subjective, though once you see it's a bunch of psychiatrists (lead author Michael Sharpe) inventing a way to subjectively characterise a physical state, it suddenly becomes no surprise at all. And the Research Nurse also had strong subjective influence on who got in and who did not, as per above.

So we had a trial where absolutely every aspect of it, from the very start to the very finish, was all down to perceptions from all quarters rather than anything real, investigating a condition that is very real, being investigated by people convinced it is not real. And it cost £5000,000 of taxpayers money that could have gone to far better research. And the investigators feel they are being treated harshly because people seek to question that. As farces go they don't get much better.
 

Daisymay

Senior Member
Messages
754
I don't know what references 41 and 42 are (the references don't go up that far in the manual), but there is not a good evidence for this claim. Also even if something could prevent CFS/ME, it becomes a different story when you already have it.

Here is a comment I wrote before on another paper co-written by Peter White:

Isn't it interesting how they happily use patients subjective answers when it suits them eg SF36, Chalder, yet when patients say they were very active pre illness, they're not depressed or they are made worse with physical and mental exertion they aren't to be believed. So they happily use subjective answers to validate their invalid theory AND their research gets through peer review, is published in so called prestigious journals and is taken as gospel by the UK medical establishment and media and none of them seem to question this anomaly?
 
Messages
2,125
I think this is a useful document. It was obtained from a freedom of information act request. It lists all the questions for the questionnaires used in the PACE trial. A lot of them are also used in other studies.
http://evaluatingpace.phoenixrising.me/PACE_Protocol.pdf
thanks for this.............worth a read.
Page 216 Therapy Integrity Rating Scale makes for amusing reading.
eg
5.
Warmth:
Did the therapist convey warmth?

and of course the CBT scale is as infuriating as ever:
3.
Rationale for cognitive procedures:
Did the therapist provide a rationale which emphasised the importance of evaluating the
accuracy of the client's beliefs and changing inaccurate beliefs in order to alleviate the
client's fatigue?
4.
Recognising cognitive errors:
Did the therapist help the client to identify specific types of cognitive distortions or errors
(e.g. all-or-nothing thinking, over-generalisation) that were present in the client's thinking?

I know this is still PACE but:
SMC seems to be just general advice on pacing, and maybe meds for pain and sleep ,fairly basic but still needing a manual...........anyone have a copy? SSMC manual.