'Recovery' from chronic fatigue syndrome after treatments given in the PACE trial

[Ari]

I'm new to group; suffering from what is called CFIDS now? I don't think it has a name yet, because it is clear my immune system has a dysfunction. I miss exercising and the benefit so much; been out of the gym for almost 2 yaers now. I tried going back today for a very light workout cause i thought maybe...just maybe i'm better. Within one hour after my 'light workout' i was out cold on the couch. Im so disappointed to hear the report on this page - i wish so much graded exercise was the answer. I was althletic and very fit when this came on with EBV and the 'mono' symptoms just come back if i exert myself. Even -...jees i did 5 minutes walking and one-two reps on machines for maybe 30 minutes.Now that pain is back in middle of head and i can hardly stay up.

 

[Graham]

Hi Ari

It's a swine, isn't it. Don't lose hope though. It would be very wrong not to treat this as a very severe and lengthy illness, and you have to really be prepared to have to work through a lot of stuff. But it is possible to improve. I personally don't think the illness ever totally goes away (I know, you don't want to hear that), but you best chances are if you are younger (I'm a wrinkly), if you take things carefully right from the start (not becoming a couch potato, but certainly not pushing yourself like that: you need to leave your body enough energy to rebuild, and it won't have that if you waste it on a gym machine!) and if you feed and look after yourself really well. Sorry, is that me being preachy? I don't mean it that way. I really do sympathise. It's just that pushing yourself like that can do so much damage, I've got to be harsh to put you right! From the sound of what you managed to do, you are in the middle of the range of how badly people are affected by the illness, and that too is good. So have an e-hug from all of us and get yourself into one of the hardest training sessions I have ever experienced: the "look after your body, save some energy for it to heal, give it time, good food and nutrients, good sleep, and try to be patient" regime. It's so tough! It doesn't mean that you have to do nothing: it does mean you must always leave energy in reserve. There's always the temptation to push through to finish something, followed by the pain and recognition of stupidity afterwards. But you'll get lots of support on this site. People really do understand. Don't be put off by the fact that many of us have had the illness for a long time: if you do the sums, it's obvious that people who do manage to get back to (some more careful form of) their usual lives wouldn't be here for long. Equally, there is a very real chance of you having this for a long long time, so act now and don't, don't push yourself like that again.

 

[biophile]

Snow Leopard referenced this paper on another thread.

General population physical function SF-36 data from South Australia

35-44 age bracket:

Mean: 90.7.
SD: 14.9.
25th Percentile: 90 points.
50th Percentile: 95 points.
75th Percentile: 100 points.
% Ceiling (top score i.e. 100): 45.0%

http://health.adelaide.edu.au/pros/...llbeing_south_australian_population_norms.pdf

Even before considering that this is a general population which includes those with illnesses excluded for a CFS diagnosis, I wonder if 45% any of the PACE Trial participants classed as "recovered" (using a so-called "comprehensive and conservative" definition of recovery) also scored 100 or even 90.

Looking at the 10 questions it is easy to understand why most people score 90-100/100 when asked the following:

Does your health limit you doing activities that you might do during a typical day?
If so, how much?

- Vigorous activities, such as running, lifting heavy objects, participating in strenuous sports?
- Moderate activities such as moving a table, pushing a vacuum cleaner, bowling or playing golf?
- Lifting or carrying groceries?
- Climbing several flights of stairs?
- Climbing one flight of stairs?
- Bending, kneeling or stooping?
- Walking more than a mile?
- Walking several hundred yards?
- Walking one hundred yards?
- Bathing or dressing yourself?

When the range is 0-100 and the scores are not normalized, the answers are scored as follows: no limitations is 10 points; minor limitations is 5 points; major limitations is 0 points.

So a PACE Trial participant could have minor limitations on almost all (8/10) questions or even major limitations on several (4/10) questions and be "recovered".

 

[Dolphin]

I hope some people are still planning to write letters.

Letters often benefit from references: simply making an interesting point doesn't necessarily look as good if a letter/paper doesn't have some references attached to it.

One area I think would be useful to reference would be recovery definitions used in trials for other illnesses, and compare and contrast them to what was done in this paper. If anyone does this, feel free to post them here, or message me privately. I don't have the time to look for a couple of weeks anyway.

 

[Dolphin]

Another example of a strange result possible, possibly the best yet even if I do say so myself.

Imagine these are somebody's results (first number is baseline, second number is at 12 months):
SF-36 PF: 65 --> 60 (i.e. a deterioration)
CFQ (Likert): 17 --> 18 (i.e. a deterioration) e.g. 22222211111-->33222111111
CFQ (bimodal): 6 --> 5 e.g. scores in last line translates to 11111100000 --> 11111000000
CGI score: 1 or 2.

This person would be counted as recovered.

 

[Apollonia]

Is any one trying to make this statistical critique public? How about getting 'More or Less' on Radio 4 and the BBC World Service to do a piece on it?

Pedantry Corner: I know nothing at all about statistics, but I do know that the word 'criteria', like 'data' and 'media', is plural. The singular is 'criterion' ('datum', 'medium'). At least they were. I suppose I have to resign myself to these usages, as to the horror of 'paninis', and to the erosion of the difference between 'it's and 'its', or 'your' and 'you're', or 'there' and 'their', and to such utterances as: 'Would you like John and I to call round?', when the speaker would never say 'Would you like I to call round?'.

Yes, I know. I'll shut up now. And I would try to get out more, but I have this funny illness...

 

[Graham]

Hi Apollonia, welcome to pedantic corner. I isnt' always rite, but I trys me best.

 

[Dolphin]

Is any one trying to make this statistical critique public? How about getting 'More or Less' on Radio 4 and the BBC World Service to do a piece on it?

Pedantry Corner: I know nothing at all about statistics, but I do know that the word 'criteria', like 'data' and 'media', is plural. The singular is 'criterion' ('datum', 'medium'). At least they were. I suppose I have to resign myself to these usages, as to the horror of 'paninis', and to the erosion of the difference between 'it's and 'its', or 'your' and 'you're', or 'there' and 'their', and to such utterances as: 'Would you like John and I to call round?', when the speaker would never say 'Would you like I to call round?'.

Yes, I know. I'll shut up now. And I would try to get out more, but I have this funny illness...

Hi Apollonia, thanks for your thoughts. I and a few others hope to write letters to the editor of the journal. If they get published, hopefully they would summarise the problems and also be accepted more after they were published (some people don't accept criticisms of establishment pieces until they are published, it seems). Somebody asked me for an explanation of the problems but I said I needed to concentrate on a letter and also was still spotting problems.

Having people with a good knowledge of English can be useful when people start writing letters.

alex3619 wrote this blog which is maybe the only attempt I know of that tries to explain some problems with the paper: http://forums.phoenixrising.me/index.php?entries/the-bluk-factor.1357/

 

[Xandoff]

I'm new to group; suffering from what is called CFIDS now? I don't think it has a name yet, because it is clear my immune system has a dysfunction. I miss exercising and the benefit so much; been out of the gym for almost 2 yaers now. I tried going back today for a very light workout cause i thought maybe...just maybe i'm better. Within one hour after my 'light workout' i was out cold on the couch. Im so disappointed to hear the report on this page - i wish so much graded exercise was the answer. I was althletic and very fit when this came on with EBV and the 'mono' symptoms just come back if i exert myself. Even -...jees i did 5 minutes walking and one-two reps on machines for maybe 30 minutes.Now that pain is back in middle of head and i can hardly stay up.

Hi ARI,

I have found after having this illness for almost ten years that learning to live within your "ENVELOPE OF ENERGY" WILL KEEP YOU FROM CRASHING... It took me years to grasp this simple cocncept. If I don't over-do it (revert back to my type A personality ways) and I won't crash. Over doing it makes me sick for longer and is just counter productive. With our immune systems we can't push through it or burn through it without paying a price. Welcome to the PR and good luck Ari!

 

[peggy-sue]

Hi Ari, from me too!
The fight you have on your hands now is to resist the urge to fight it. It's really, really hard.

I call resting "Positive Inaction".
It helps me to cope with "doing" it.
It's like putting energy in the bank to save up for being able to do something nice.

A couple of tiny things which will help are;-
Never stand when you can sit, and never sit when you can lie down.

In fact, never stand.
If you have to, shuffle around a bit. It's a lot easier and uses up less energy than standing still.
Standing still involves about 360 different muscles working and pulling against each other. And you have to keep your balance.
Shuffling involves fewer muscles, the work is constantly being shifted from one group to another, no group tires out and you do not have to maintain your balance. (more work)
When you are sitting, keep your feet raised.

Both those things help your heart loads!
Your heart has to pump blood around your body. The further away from the heart the blood is, the harder the heart has to work to shove it along. The furthest away the blood gets is to your feet.

Once it's all the way down there, your poor heart has to fight against gravity to get it back up your legs.

But the body has a wee trick going on in your legs here - it's called the "muscular pump".
As you move your legs, the muscles in them expand and contract and squeeze the veins, which pushes the blood up again - there are valves which stop it going back down.

So shuffling is better than standing.
And keeping your feet raised when sitting means that your heart isn't fighting against gravity - you're "on the flat".

These are just tiny wee things - but if you can encorporate them into your daily life, they will make a huge difference in your functioning.

 

[Simon]

Graph of patients meeting recovery criteria for CBT


This helped me get a clearer idea of what's going on, myabe it will help others too. Note that the thresholds defined by the authorsfor "normal" fatigue and SF-36 function are very low.

Data from Table 1 of paper. CGI 'improved' is patients rating of overall health "much better", or "very much better" compared to the start of the trial - as per authors' definition.

 

[Graham]

Thanks Simon. I still haven't looked at the recovery paper. I'm decorating the study bedroom (very slowly) and the printer is unavailable. I just don't seem able to take these things in onscreen. So I have copied your graph for future reference.

 

[Dolphin]

Graph of patients meeting recovery criteria for CBT


This helped me get a clearer idea of what's going on, myabe it will help others too. Note that the thresholds defined by the authorsfor "normal" fatigue and SF-36 function are very low.

Data from Table 1 of paper. CGI 'improved' is patients rating of overall health "much better", or "very much better" compared to the start of the trial - as per authors' definition.

View attachment 4466

Just to be explicitly clear (Simon probably knows this, but message to others): the same people may not be in each group. But it gives an idea of how each group is compared to others, proportionally.

Also, Simon, if you were so inclined, you could do the same graph but include the percentages for each (out of the 78% who did not have the final recovery definition).

 

[Mark]

Pedantry Corner: I know nothing at all about statistics, but I do know that the word 'criteria', like 'data' and 'media', is plural. The singular is 'criterion' ('datum', 'medium'). At least they were. I suppose I have to resign myself to these usages, as to the horror of 'paninis', and to the erosion of the difference between 'it's and 'its', or 'your' and 'you're', or 'there' and 'their', and to such utterances as: 'Would you like John and I to call round?', when the speaker would never say 'Would you like I to call round?'.

Welcome to the forums Apollonia. Fellow pedants are always welcome! I'm always looking for proof-readers for the Content Team...

 

[Dolphin]

Just to point out that I adjusted the figures in message #192 : http://forums.phoenixrising.me/inde...n-in-the-pace-trial.21628/page-10#post-332211 quite a lot after I noticed we had more information that could be used.

I also added in separate figures for
CGI of 1 or 2 did not satisfy one or more of the following:

Oxford Criteria not met
or
within SF-36 PF normal range
or
within CFQ normal range

However, these figures aren't that different from the top figures (which have been adjusted, as I said).

 

[Dolphin]

I'm trying to resist sending an e-mail to the authors with "I know what you did last summer ..." (this was submitted August 2012).

 

[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.

 

[Firestormm]

Your point 1 was addressed in the debate to the extent that (from my foggy memory cell), this was one of the parameters of the Trial i.e. that it would depend on people being able to attend. Not to say that the results weren't publicised in such a way as to totally ignore the lack of 'severe' patients or these other limitations because they were. The newspaper headlines and quotes were all suggestive of PACE being the answer for everybody: Just GET out and exercise!

Your point 2 was also addressed. Apparently the way in which it was done is perfectly acceptable. Although I would personally agree with you. It was pathetic. But then again I have nothing with which to compare. It could happen a fair bit especially in these kind of non-pharmacological trials. I really couldn't say.

Your point 3 is a little beyond me at the moment. Am in need of a rest myself.

 

[Graham]

My only gripe here is with Disraeli's quote (although it may not have been his). He might just as well have said "lies, damned lies, and English". It is the misuse of statistics (or English) that deceives. The rules about what can and cannot be done with statistics are strict, but were not followed in the PACE study, as you righty point out. The fault isn't with statistics, but with breaking the rules. Your better use of the figures paints a very different and useful picture, but using the mean and standard deviation is only meaningful if you have a normal/Gaussian distribution. Most of the data in these assessments comes from highly skewed data, and using medians as averages, and percentiles to determine ranges makes their exaggerations even worse.

 

[Enid]

Tend to agree with Graham on this one. For starters can " recovery" be measured by walking up or down stairs. All here live within an "envelope" - like me of many years now. My Osteopath declined to treat some time ago when pushing my envelope and walking more easily resulted in a bad relapse. She knew she did not understand the illness.