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

wdb

Senior Member
Messages
1,392
Location
London
This is the histogram in question.
PACE-Histogram-(1).png


Notice how poorly the normal plot reflects the distribution of the actual data, as has been said it was clearly grossly inappropriate for them to have treated the data as though if it had followed this curve. ±1 standard deviation should account for 68.2% of the population not what looks more like 90-95%.
 

Sean

Senior Member
Messages
7,378
Return to work is not, however, an appropriate measure of recovery if the participant was not working before their illness
I was working full time. It is appropriate for me.​
Objectively confirmed return to something near their pre-illness capacity for general activity certainly is an appropriate definition of recovery.

Objective measures of physical activity have been found previously to correlate poorly with self-reported outcomes...

So the 'solution' is to just ignore those uncooperative objective measures, and arbitrarily define 'recovery' in purely subjective terms?

They are claiming 22% recovery after either CBT or GET.

It's beyond parody. Especially for CBT, which did not produce any objective improvement at all.

Something has clearly gone terribly wrong with peer review in this area of medical science.​
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Response from the MEA's Dr Shepherd:

http://www.meassociation.org.uk/?p=14333

Initial reaction from Dr Charles Shepherd, Medical Adviser, The ME Association:

It is really quite bizarre to find that there is absolutely no data whatsoever in this paper on what most people would regard as three objective markers of recovery:
1 a return (or ability to return) to full time meaningful employment or education
2 no longer claiming any DWP sickness or disability benefits
3 an estimation of how far someone can walk
Just as surprising is the absence of any discussion on the use of benefits as a marker of recovery along with the very unsatisfactory reasoning given in the paper (on page 6) for not using employment status or an objective measure of activity levels:
 
Messages
15,786
This also stuck out:
The CGI change scale was also rated by the SMC doctor at the 52-week review. These scores were used as imputed scores when the participant-rated CGI score was missing at 52 weeks (n=22).
So if the patient didn't self-rate, the doctor's rating of that patient was used. And the doctors rated all patients, yet that rating doesn't seem to be included unless the patient didn't self-rate. This seems like a great opportunity for the researchers to take a look at the self-rating versus the doctor rating and cherry pick the best set of results to use.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
To see what all the fuss is about, I ran an SF-36 online for me. I tried to post the results. It wont go as a graph, so here is my final data summation:

PCS (Physical)18.7

MCS (Mental) 47.2

http://www.sf-36.org/demos/SF-36.html

Both these results are NORMATIVE and I think the norm is 50.

On non-normative my physical PF is 30! I am only a MODERATE patient too, and I have not been particularly bad lately, aside from a brief crash the other day. (Under the ICC I would class as severe though, as I am mostly homebound though not bedbound.)

So what does this say about an entry criteria of 65? (Though presumably this is a composite score.) I wonder how low a severe patient would score? I am going to run a hypothetical severe patient, based on my limited knowledge, just to get an idea.

OK, as a general idea I get normative PCS of 10.9 and MCS of 43.9. Of course I have no idea how accurate this is. Non-normative physical functioning was 15.2.

Given the vast difference between moderate and severe patients, and severe and very severe, I have to ask how useful is SF-36 for ME? Ok, lets compare with how I was in the late 80s when I was first diagnosed, though my memory of that time is fubar so again I can't say this is really accurate.

My normative PCS was 26.6. Yet I was a LOT better physically than I am now. My MCS was 48.1. My non-normative PF was 51!

This was when I had a LOT more energy and was able to attend university full time (then come home and collapse). Something is really wrong here, and I have no way to be sure if the test I did is a typical SF-36.
 

Min

Guest
Messages
1,387
Location
UK

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Hi Min, I would hit "like" for your post but I don't in any way want to be seen endorsing the AfME claim. It reads like a pro-White press release. I am happy you posted this though. They also persist in confusing APT with pacing, where the rules of APT qualify almost as a logical negation of pacing. Bye, Alex
 
Messages
13,774
This also stuck out:

So if the patient didn't self-rate, the doctor's rating of that patient was used. And the doctors rated all patients, yet that rating doesn't seem to be included unless the patient didn't self-rate. This seems like a great opportunity for the researchers to take a look at the self-rating versus the doctor rating and cherry pick the best set of results to use.

If they were blinded to which treatment arm the patient was in, this would be okay. If they weren't blinded, then that's pretty ridiculous.

I can't believe that they didn't even require that there wasn't an over-lap in scores for the entry criteria and for 'recovery'. They just added in little provisos instead. They really don't give a shit do they? They think that they've so successfully portrayed their critics as anti-science and stigmatising mental health issues that no-one with any power or influence will care about how they misrepresent their work to patients. I think that the tollerance for this sort of spin is indicative of the real stigma of mental health issues. If CFS was not widely seen as a mental health problem, I do not think that it would be seen as so acceptable to misrepresent the efficacy of the treatments available for it.

Thins like this from the Science Media Centre:

Prof Willie Hamilton, Professor of Primary Care Diagnostics, University of Exeter, said:
“This paper is excellent news. The early reports showed that graded exercise therapy and cognitive behavioural therapy had better outcomes. What’s new here is the prospect of recovery. At times with CFS/ME patients it’s easy to get despondent. Sure, only a fifth of patients fully recovered, but – as the authors say – we can work hard on finding better treatments for the other four fifths.”

"Poor CFS patients can get despondent when they see honestly presented data about the poor chances of recovery... so it's great the we've been able to cheer them up with the prospect of recovery! Remember, a good trusting relationship with your doctor is very important too, so don't look too closely at the figures or you might become one of those angry dysfunctional patients we all hate."
 
Messages
13,774
For those interested I thought that I'd whack the press releases and 'expert commentary' together. No press reports about it yet, when normally SMC stuff does gain traction. Maybe reporters are busy looking in detail at the specifics of the paper and the criteria use.

*sigh*.


Dr Esther Crawley provides expert comment on latest research into Chronic Fatigue Syndrome

Press release issued 31 January 2013
Dr Esther Crawley, Reader in Child Health at the University’s School of Social and Community Medicine has commented to the media on new findings, published in Psychological Medicine today [31 Jan 13], about a multi-centre PACE trial, which found that rehabilitative cognitive behaviour therapy (CBT) and graded exercise therapy (GET) were more effective treatments for chronic fatigue syndrome (CFS) than specialist medical care (SMC) alone.
Commenting on these new findings, Dr Crawley said: “Every patient with CFS/ME wants to know how likely they are to recover. This large, well-conducted trial shows convincingly that adult patients who receive CBT or GET have a much greater chance of recovery than those who see a doctor alone, or who are treated with adaptive pacing. It is sobering to see that, even with the best possible treatment, only 22 patients of patients recovered.
"Although the authors worked hard to define recovery based on the data available from the PACE trial, we need further research to understand what recovery means for patients with CFS/ME, and how to measure it in future studies."

http://bristol.ac.uk/news/2013/9101.html

"Urhh.... we're just too stupid to work out what recovery means to CFS patients. We assumed that they would want us to use a special definition, which included high levels of fatigue and disabilty."

January 31, 2013

expert reaction to new research into therapies for Chronic Fatigue Syndrome/ME


The latest results from the PACE trial, published in Psychological Medicine, show that cognitive behaviour therapy (CBT) and graded exercise therapy (GET), as supplements to specialist medical care, increase the likelihood of recovery from CFS three-fold compared to other treatments studied.

Dr Esther Crawley, Reader in Child Health, University of Bristol, said:
“Every patient with CFS/ME wants to know how likely they are to recover. This large, well conducted trial shows convincingly that adult patients who receive cognitive behavioural therapy (CBT) or graded exercise therapy (GET) have a much greater chance of recovery than those who see a doctor alone, or who are treated with adaptive pacing. It is sobering to see that, even with the best possible treatment, only 22% of patients recovered.
“Although the authors worked hard to define recovery based on the data available from the PACE trial, we need further research to understand what recovery means for patients with CFS/ME, and how to measure it in future studies.”

Prof Willie Hamilton, Professor of Primary Care Diagnostics, University of Exeter, said:
“This paper is excellent news. The early reports showed that graded exercise therapy and cognitive behavioural therapy had better outcomes. What’s new here is the prospect of recovery. At times with CFS/ME patients it’s easy to get despondent. Sure, only a fifth of patients fully recovered, but – as the authors say – we can work hard on finding better treatments for the other four fifths.”

Dr Alastair Miller, Consultant in Infectious Disease, Royal Liverpool University Hospital and Deputy Chair British Association for CFS/ME (BACME), said:
“This is another encouraging result to come out of the “PACE stable” showing that recovery from CFS/ME is not only possible but considerably more likely with the current therapeutic approaches of cognitive behavioural therapy and graded exercise therapy. Whilst it is well recognised that these techniques will not benefit everyone and further research into alternative approaches continues to be a priority, these results add to the growing evidence base for our current therapeutic strategy.”

Reference:
‘Recovery from chronic fatigue syndrome after 2 treatments given in the PACE trial’ by P. White et al., published in Psychological Medicine on Thursday 31 January 2013.

http://www.sciencemediacentre.org/e...nto-therapies-for-chronic-fatigue-syndromeme/

Researchers identify promising treatments for chronic fatigue

January 31, 2013 in Psychology & Psychiatry
2-researchersi.jpg

Enlarge

Chronic Fatigue Syndrome is a long-term condition affecting around 250,000 people in the UK.

(Medical Xpress)—Two treatments most likely to lead to recovery from chronic fatigue syndrome (CFS) have been identified by UK researchers.
The PACE trial, a randomised controlled trial (RCT) of 640 patients, compared the effects of four different treatments for CFS. The study found that supplementing specialist medical care with cognitive behaviour therapy (CBT) or graded exercise therapy (GET) increased participants' chances of recovery threefold compared to specialist medical care (SMC) alone or supplemented by adaptive pacing therapy (APT).

The trial, conducted collaboratively by researchers from the University of Oxford, King's College London, Queen Mary University of London and the Medical Research Council (MRC), is published today in Psychological Medicine.

Professor Michael Sharpe, University of Oxford co-principal investigator of the PACE trial and co-author of the latest paper, said: 'The rehabilitative treatments of CBT and GET for CFS have been controversial. This analysis of the PACE trial data shows that not only do they achieve improvements in the majority, but they can also lead to effective recovery in a substantial minority.'

Chronic Fatigue Syndrome is a debilitating long-term condition affecting around 250,000 people in the UK which causes extreme physical and mental fatigue. Symptoms include muscle and joint pain, disturbed sleep and both concentration and memory problems. Exertion typically worsens symptoms, which can make treatment of the condition challenging for healthcare professionals.

The specialised medical care offered to all participants in the study included advice on managing the condition as well as prescription medications to manage the symptoms. A quarter of the patients also received CBT involving consultations with clinical psychologists or specialist nurses. They helped patients to understand the influence of their mental attitudes on their physical symptoms, and encouraged them to increase physical activity.


Physiotherapists helped patients in the GET group to develop incrementally challenging exercise regimes tailed to their specific circumstances. And with APT, occupational therapists advise patients to match their activity levels to their own energy, rather than aiming to increase activity over time. This approach is more about adapting to the illness than trying to overcome it.

In the patient groups treated by CBT or GET, 22% of patients had recovered a year after being randomised to treatments. This compares with 8% of those receiving APT and 7% of those who received only SMC.

Previously published results from the PACE trial showed that both CBT and GET led to greater reductions in symptoms and disability than either APT or SMC. In this analysis the researchers have gone a step further and examined how many patients recovered from their illness after these treatments.

Recovery was assessed after one year. Patients were defined as having recovered when they no longer met several criteria used to diagnose CFS and assess eligibility for the study. Participants were only considered recovered if they met these criteria and rated themselves as being 'much' or 'very much better' in their overall health.

Lead researcher Professor Peter White of Queen Mary, University of London said: 'Some people may question the use of the term "recovery", and how to define when a patient is "recovered" was a key issue we faced. We focused on recovery from the current episode of the illness, and have used several measures of both symptoms and disability to give us the most complete picture possible. Further long-term analysis is needed to see if recovery is maintained long-term.'

Professor Trudie Chalder from King's College London's Institute of Psychiatry, said: 'The fact that people can recover from chronic fatigue syndrome is excellent news. Healthcare professionals can now be more confident in sharing this possibility with patients, many of whom are understandably concerned about their future.'
More information: Recovery from chronic fatigue syndrome after treatments given in the PACE trial, dx.doi.org/10.1017… 291713000020

Journal reference: Psychological Medicine
Provided by Oxford University

http://medicalxpress.com/news/2013-01-treatments-chronic-fatigue.html

Rehabilitation therapies can lead to recovery from chronic fatigue syndrome

item89978.jpg

Thursday 31 January 2013

Research led by Queen Mary, University of London, has shown that recovery from chronic fatigue syndrome (CFS) is possible for some patients, and has identified two treatments most likely to lead to recovery.
The latest results from the PACE trial* show that cognitive behaviour therapy (CBT) and graded exercise therapy (GET), as supplements to specialist medical care, increase the likelihood of recovery from CFS three-fold compared to other treatments studied. The trial, carried out in collaboration with researchers from King’s College London, the University of Oxford and the Medical Research Council (MRC), is published today in Psychological Medicine.
CFS is a long-term and debilitating condition that affects around 250,000 people in the UK. Symptoms include profound physical and mental fatigue (characteristically made worse by exertion), muscle and joint pain, disturbed sleep and both concentration and memory problems. The researchers studied 640 participants with CFS who were randomised into one of four treatment groups:
  • Specialist medical care (SMC) alone;
  • SMC plus adaptive pacing therapy (APT);
  • SMC plus cognitive behavioural therapy (CBT);
  • SMC plus graded exercise therapy (GET)
Evidence for recovery was assessed one year after participants were randomly allocated to treatments.
Previous published results showed that both CBT and GET led to greater reductions in symptoms and disability than either APT or SMC. In this analysis the researchers have gone a step further and examined how many patients had recovered from their illness after these treatments. Patients were classed as recovered if they no longer met several criteria for ill health which were initially used to define eligibility for the trial. These included not suffering from significant fatigue or physical disability, and no longer meeting diagnostic criteria for CFS. Patients also had to rate themselves as being “much” or “very much better” in their overall health.
The findings showed that those who received CBT or GET, in addition to SMC, were three times more likely to meet the criteria for recovery than those receiving SMC alone or in combination with APT. Overall 22 per cent of those who received either CBT or GET, in addition to SMC, met the criteria for recovery, compared to eight per cent after APT in addition to SMC, and seven per cent after SMC alone. There were similar patterns of recovery however CFS was defined, including those who were diagnosed as having myalgic encephalomyelitis (ME), thought by some to be the same as CFS and by others as being different.
Peter White, Professor of Psychological Medicine at Barts and the London School of Medicine and Dentistry, part of Queen Mary, was the lead co-principal investigator of the PACE trial and co-author of the latest paper.
Professor White said: “This is good news and shows that recovery from this debilitating condition is possible for some patients. We now need to go further to understand why only a relatively small proportion of patients recover, which shows how much this condition varies between individuals; one treatment is unlikely to work for everyone.
“Some people may question the use of the term ‘recovery’, and how to define when a patient is ‘recovered’ was a key issue we faced. We focussed on recovery from the current episode of the illness and used several measures of both symptoms and disability to give us the most complete picture possible. Further analysis is needed to see if recovery is sustained in the long-term.”
Professor Michael Sharpe, University of Oxford co-principal investigator of the PACE trial and co-author of the latest paper, said: “The rehabilitative treatments of CBT and GET for CFS have been controversial. This analysis of the PACE trial data shows that not only do they achieve improvements in the majority, but that they can also lead to recovery in a substantial minority.”
Professor Trudie Chalder from King’s College London’s Institute of Psychiatry, said: “The fact that people can recover from chronic fatigue syndrome is excellent news. Healthcare professionals can now be more confident in sharing this possibility with patients, many of whom are understandably concerned about their future.”
The paper is freely available to read at http://journals.cambridge.org/psm/White
For media information, contact:
Katrina Coutts
Public Relations Manager
Queen Mary, University of London
email: k.coutts@qmul.ac.uk
Related links:

* About the PACE trial
The PACE trial was funded by the Medical Research Council, Department of Health, Chief Scientist Office, Scotland, and Department for Work and Pensions.
PACE is the largest ever randomised controlled trial of treatments for CFS/ME, led by researchers at Queen Mary, University of London, the University of Oxford and King’s College London. It began in 2005 and compared four of the main treatments currently available for CFS/ME.
All 640 trial participants received specialist medical care, which included general advice about managing the illness and were prescribed medicines for symptoms such as insomnia and pain.
Patients were randomly divided into four groups and three of the groups were also given one of the following therapies over six months:
  • Cognitive behavioural therapy (CBT) – An appropriately trained clinical psychologist or nurse helps the patient to understand how their symptoms can be affected by the way that they think about and cope with them, and encourages them to try increasing their activity.
  • Graded exercise therapy (GET) – An appropriately trained physiotherapist helps the patient to try a gradually increasing tailored exercise programme which takes into account the individual patient’s symptoms, fitness, and current level of activity.
  • Adaptive pacing therapy (APT) – An appropriately trained occupational therapist helps the patient to match their activity level to the amount of energy they have, aiming to help the patient adapt to the illness rather than assuming they can gradually do more.
CBT and GET are used widely in the health service to treat a range of conditions including rheumatoid arthritis, heart disease, diabetes, depression and chronic pain.
Previous findings from the PACE trial found that CBT and GET in addition to specialist medical care (SMC) were more effective treatments, and better value, than adaptive pacing therapy (APT) with SMC, or SMC alone.
Further information is available at http://www.pacetrial.org/

http://www.qmul.ac.uk/media/news/items/smd/89978.html

From the Medical Research Council:

Rehabilitation therapies can lead to recovery from chronic fatigue syndrome

31 January 2013


Research led by Queen Mary, University of London, has shown that recovery from chronic fatigue syndrome (CFS) is possible for some patients, and has identified two treatments most likely to lead to recovery.

The latest results from the PACE trial show that cognitive behaviour therapy and graded exercise therapy, as supplements to specialist medical care, increase the likelihood of recovery from CFS three-fold compared to other treatments studied. The trial, carried out in collaboration with researchers from King’s College London, the University of Oxford and the Medical Research Council, is published today in Psychological Medicine.

View the press release from Queen Mary, University of London

The research paper is available to read free of charge in the journal Psychological Medicine
http://www.mrc.ac.uk/Newspublications/News/MRC008984
 
Messages
15,786
From the Zombie Science Propaganda Unit:

That is either straight fraud, or criminal incompetence. What a disgrace.

I think it's "too stupid to read the paper, so he read the abstract and pretended he knows what the paper really says".
 

SOC

Senior Member
Messages
7,849
This is the histogram in question.

Notice how poorly the normal plot reflects the distribution of the actual data, as has been said it was clearly grossly inappropriate for them to have treated the data as though if it had followed this curve. ±1 standard deviation should account for 68.2% of the population not what looks more like 90-95%.

Thanks for that, wdb. I took your figure to my class of 12-14 year old homeschooled math and science students to show them the dangers of math and science illiteracy in our society. They had no problems seeing how oddly the data was represented. :)
 

user9876

Senior Member
Messages
4,556
It must be a little bit embarassing for Esther Crawley as she claimed pace had a 40% recovery rate a while ago. So when they claim a 22% (15% above SMC) she has been shown to be wrong.

But then she promises her patients a 97% recovery rate.
 

PoetInSF

Senior Member
Messages
167
Location
SF
Using the population measure for the recovery criteria is indeed a problem. It may be normal for 70 year old or obese 50 year old to score 60. But it is a nonsense to call a patient who used to be healthy enough to score 100 a "recovery" because he now scores 60.

Calling it a recovery if you no longer fully meet the criteria for CFS is also problematic. Having 4 out 8 symptoms may be required for the diagnosis, but having only 3 out of 8 after having had 4 is not a recovery. Imagine calling it a recovery because you no longer have sore throat when you are still left with severe cases of PEM and unrefreshing sleep.

They should just do away with the recovery rate and stick to the improvement measure. It serves no purpose other than for propaganda, as in this press release.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
So basically "recovery" has been changed to mean "the presumed process of recovery".


And there are two sorts of recovery: "trial recovery" meaning no more chronic fatigue, and clinical recovery meaning no more CDC or modified London ME symptoms. So if the "fatigue" is not the primary symptom, but PEM, OI, etc are still in full force, they would meet the trial definition of recovered.

Cool, I'm already recovered and don't even need CBT or GET :p

it wasn't required to meet CDC or modified London (whoa, did they admit to modifying London previously?) in order to enter. So again no indication of whether this is improvement or a change of any kind
 

Persimmon

Senior Member
Messages
135
I guess lots of us are soon going to be on the receiving end of a new round of "helpful advice" from friends or family members - You know, things like:
"Hey, I saw this fantastic article about how you can fully recover from your chronic fatigue. Isn't it exciting! You've got to get on and start this therapy ASAP..."

I never feel I have an adequate answer to these sorts of well-intentioned reactions to the psychobabble propaganda.
If you say outright that it's scientific fraud, you look like an idiot, or at least that you're being unreasonable; inviting them to read about the study's flaws is equally unproductive...


Ps just did the SF-36 Physical Function test with my frail but healthy 88 year old neighbour (she's charming and fun.) We scored the same (60points). I guess that proves I'm already fully recovered: I meet the PACE recovery threshold, and I function at the same level as a healthy person. QED