PACE Trial and PACE Trial Protocol

[biophile]

Thanks for the compliments! I just added the following minor addition and important caveat:

[EDIT: In a small CFS study by VanNess et al 2010 (http://www.ncbi.nlm.nih.gov/pubmed/20095909), the mean(SD) of healthy sedentary controls was 96.84(4.48), suggesting a lower threshold of 90/100 points!]

[EDIT: To be cautious here, the PF/SF-36 frames questions towards limitations rather than abilities or activity levels, and is limited to 100 points. Therefore it is quite possible that some people who score 100 are much more active than others who also score 100 (top box ceiling), so if the PF/SF-36 was measuring activity levels it may follow a more normal distribution anyway, making the "mean -1SD rule" adequate afterall but ONLY when using a reasonable comparison population per above ie a healthy working age population (or better still) healthy age-matched controls.]

Can you believe nearly 6 months has passed already? We all still have to wait for and endure their "recovery" paper. In general, I still need to assimilate the finer technical points made recently by oceanblue and Dolphin and Graham etc. Am still investigating the important issue of criteria and possible exclusions, as raised by Angela Kennedy.

 

[Dolphin]

British Association of CFS/ME (BACME) 2012 Conference

There will be lots on PACE at this conference but no (explicit) mention of recovery in this list

http://www.bacme.info/document_uploads/BACME_Events/BACMEConfFlyer2012.pdf

Jurys Hotel, Milton Keynes, Bucks

Weds 14th & Thurs 15th March 2012

Provisional Content

The next conference will be showcasing the PACE Trial with key note speakers, including:

Professor White - overview of trial findings

Professor Trudy Chalder - moderators and mediators: what makes it worse/better, what helps for whom

Professor Michael Sharp - data on follow up and long term prognosis

Dr McCrone - is the treatment cost effective? What offers best value for money?

Other presentations will include:

Dr Esther Crawley - financial cost of CFS/ME/anxiety in young people/FMRi scanning for cognitive problems

TBC - Biomedical markers

Sue Pemberton temporal aspects of CFS/ME

Planned Workshops include:

Great Ormond Street

GET and CBT

Activity management approaches

Socialisation to treatment models - Dr Jo Daniels

And this year a special performance of a theatre group performing a drama about CFS/ME, sponsored by Professor Anthony Pinching.

Early bird rate available for BACME Members please complete and return the registration form to Sue Webb, CFS/ME Conference Admin

 

[oceanblue]

Re BACME conference PACE coverage (thanks, Dolphin)

Not sure 'showcase' is quite the right way to describe a review of PACE findings!

Professor Michael Sharp - data on follow up and long term prognosis

I wonder if they will define recovery in order to measure prognosis?

Dr McCrone - is the treatment cost effective? What offers best value for money?

Now that will be very interesting to see. I suspect they will need recovery data to calculate cost-effectiveness.

 

[Dolphin]

(Junk?) SF-36 - US normative data - percentages at 0 and 100 for each subscale

SF-36 - US normative data - percentages at 0 and 100 for each subscale (and PCS and MCS):

Although, as I recall, only the physical functioning subscale was used in the PACE Trial, if one reads more widely one will see all eight subscales being used as well as the two composite scores, MCS and PCS.

I thus thought I'd post a link to:
http://www.sf-36.org/tools/sf36.shtml (around 2/3 of the way down)

Table 1: Summary of Information about SF-36 Scales and Physical and Mental Component Summary Measures

The rightmost two numbers are the percentages at 0 and 100 for each subscale.

It also gives population data.

I'm pretty sure the top-box for the SF-36 PF subscale was posted before so not sure if this will be of interest to many or not.

 

[Dolphin]

100 on SF-36 PF does "not extend the range into well being"

In the last message, I linked to:

http://www.sf-36.org/tools/sf36.shtml
SF-36 Health Survey Update
John E. Ware, Jr., Ph.D.

which I just read for my sins.

It is written by the creator and is largely very positive about the questionnaire.

The advantages of norm-based scoring can be illustrated by comparing the SF-36 profile scored using the original 0100 scoring algorithms based on the summated ratings method) and the norm-based scoring algorithms for a sample of asthmatic patients who participated in a clinical trial (Okamoto, Noonan, DeBoisblanc, & Kellerman, 1996). The original SF-36 0-100 scoring produced the profile shown in Figure 3. The shape of this profile the peaks and valleys due to higher and lower scores across scales reflect both the impact of asthma on SF-36 health concepts, as well as arbitrary differences in the ceilings and floors of the SF-36 scales. Three scales, namely GH, VT, and MH, measure relatively wide score ranges and set the ceiling relatively high by measuring very favorable levels of those health concepts (Ware et al., 1993). Other scales, such as PF and RP, assess a narrower range. The most favorable levels (scored 100 using the original SF-36 algorithms) for PF and RP represent the absence of limitations and do not extend the range into well being. Thus, the average score for each scale differs substantially across the profile for reasons that have nothing to do with asthma, using the original SF-36 0-100 scoring. The inference from the profile in Figure 3, that asthma has a greater impact on PF than on VT, is incorrect.

This is related to the point that anciendaze and others have made.

 

[Snow Leopard]

We all still have to wait for and endure their "recovery" paper.

What "recovery" paper? All I remember is they're going to be doing a cost effectiveness paper, where the employment data should hopefully be published. But it's quite possible that we will never see the recovery data (as per original protocol) published.

 

[Dolphin]

What "recovery" paper? All I remember is they're going to be doing a cost effectiveness paper, where the employment data should hopefully be published. But it's quite possible that we will never see the recovery data (as per original protocol) published.

This is what Peter White said in a letter to Richard Horton:

We are planning to publish a paper comparing proportions meeting various criteria for recovery or remission, so more results pertinent to this concern will be available in the future.

http://www.meactionuk.org.uk/whitereply.htm

 

[Snow Leopard]

Ah, OK. Thanks Dolphin.

 

[biophile]

Another questionable claim by Horton?

Not sure if this has already been spotted ...

"The MRC funded PACE trial, led by White, evaluates CBT, graded exercise, adaptive pacing and usual medical care in the treatment of CFS, and is over half-way completed (http://www.pacetrial.org) (PACE trial MRC 04-09 2,076,363, DH Central Subvention 04-09 1,800,600; MRC PACE trial extension 09-10 702,975)."

[Queen Mary, University of London | UOA 9 - Psychiatry, Neuroscience and Clinical Psychology | RA5a: Research environment and esteem]

http://www.rae.ac.uk/submissions/ra5a.aspx?id=9&type=uoa&subid=1724

"And indeed the study costs $4 million pounds to undertake but the allegations and the freedom of information requests and the legal fees that have been wrapped up over the years because of these vexatious claims has added another 750,000 pounds of taxpayers' money to the conduct of this study."

[Richard Horton's comments on the PACE Trial during the ABC Radio broadcast in Australia]

http://www.abc.net.au/rn/healthreport/stories/2011/3192571.htm#transcript

So Horton is apparently blaming the "PACE trial extension 09-10 702,975" on "the allegations and the freedom of information requests and the legal fees that have been wrapped up over the years because of these vexatious claims". Does anyone know whether this was just another assfact or not? Another possibility from looking at the figures, perhaps there were 50,000 pounds in FOI requests and legal fees and the 700,000 pounds was just casually added on out of confusion or spin doctoring.

Also I noticed this from the same conversation:

Norman Swan: Yet patients groups were involved, engaged in the study all the way through.

Richard Horton: Indeed, and I think this is where one sees a real fracture in the patient community. One is seeing a very substantial number of patients very willing to engage in this study, desperate to get good evidence on which to base their future treatment but one sees a fairly small, but highly organised, very vocal and very damaging group of individuals who have I would say actually hijacked this agenda and distorted the debate so that it actually harms the overwhelming majority of patients.

The part about this supportive "engagement" from patient group(s) vs [the "vocal" critics' antagonism] indicating a "real fracture in the patient community" is amusing when considering how the patient group implicated above (AfME) then joined the critics when they saw the final methodology and results, then discussed an ongoing "strategy" response against the negative implications of PACE, all of which went against the opinions of their own "Principal Medical Adviser" (Dr Alastair Miller, who was involved in PACE and gave the trial glowing praise for the Science Media Centre but toned it down for an AfME newsletter). This happened several weeks before Horton appeared on radio 18th April 2011.

Afterwards, AfME noted their letter to the Lancet was rejected for publication and reiterated their previous criticisms. As far as I know, such criticism was almost universal amongst patient groups, and there was only a single patient group on the planet (AYME) that "welcomed" the PACE Trial when it was published (http://www.ayme.org.uk/article.php?sid=7&id=316). I'm sure there are indeed many newbie patients in the wider community who are willing to engage in therapies like CBT/GET or whatever, some may even find some benefit from them. We are "desperate to get good evidence on which to base their future treatment", but from bitter experience we learnt that what we are spoon fed regarding ME/CFS is not necessarily true.

Many of us were stung by the biopsychosocial approach and witnessed the fundamental flaws in the cognitive behavioural model in particular, disappointed to the point of feeling scammed by charismatic psychobabble. I highly doubt that the typical critic here on this forum (or their loved one) suddenly woke up one day with both ME/CFS symptoms and an instant irrational cynicism towards CBT/GET and potential psychosocial factors. For me anyway eager to explore the psyche-soma connection, the increased skepticism towards the claims of biopsychosocialists was a long process borne from observation and reason, catalyzed by humiliating disappointment, culminating in the realization of having been short-changed.

 

[Dolphin]

(Not exciting)

(1) To derive their goalpost for normal ie 60/100 points or more, they claimed to have used a "working age population" but later admitted to using a general population, which included 1/4 who were elderly and 15-22% who were diseased and/or had to cut down on activities recently due to illness. If using datasets from either healthy working age populations, or a similar age group as the PACE participants even from a general population, the definition of normal ie [mean (average) minus 1 standard deviation] should have yielded a lower threshold of 80/100, not 60/100. [EDIT: In a small CFS study by VanNess et al 2010 (http://www.ncbi.nlm.nih.gov/pubmed/20095909), the mean(SD) of healthy sedentary controls was 96.84(4.48), suggesting a lower threshold of 90/100 points!]

I happened to read another paper which gave similar details (abstract below):

"we recruited ... 10 healthy controls from the local community."

- so probably not that exciting as not specifically sedentary.

The age of 40.5 is very similar to the mean age (39) of the PACE Trial participants at the end of the trial.

Free full text: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2170292/pdf/v065p00541.pdf

Effects of exercise on cognitive and motor function in chronic fatigue syndrome and depression.

J Neurol Neurosurg Psychiatry. 1998 Oct;65(4):541-6.

Blackwood SK, MacHale SM, Power MJ, Goodwin GM, Lawrie SM.

Source
Edinburgh University Department of Psychiatry, Royal Edinburgh Hospital, UK.

Abstract
OBJECTIVES:
Patients with chronic fatigue syndrome complain of physical and mental fatigue that is worsened by exertion. It was predicted that the cognitive and motor responses to vigorous exercise in patients with chronic fatigue syndrome would differ from those in depressed and healthy controls.

METHODS:
Ten patients with chronic fatigue syndrome, 10 with depressive illness, and 10 healthy controls completed cognitive and muscle strength testing before and after a treadmill exercise test. Measures of cardiovascular functioning and perceived effort, fatigue, and mood were taken during each stage of testing.

RESULTS:
Depressed patients performed worst on cognitive tests at baseline. During the treadmill test, patients with chronic fatigue syndrome had higher ratings of perceived effort and fatigue than both control groups, whereas patients with depression reported lower mood. After exertion, patients with chronic fatigue syndrome showed a greater decrease than healthy controls on everyday tests of focused (p=0.02) and sustained (p=0.001) attention, as well as greater deterioration than depressed patients on the focused attention task (p=0.03). No between group differences were found in cardiovascular or symptom measures taken during the cognitive testing.

CONCLUSIONS:
Patients with chronic fatigue syndrome show a specific sensitivity to the effects of exertion on effortful cognitive functioning. This occurs despite subjective and objective evidence of effort allocation in chronic fatigue syndrome, suggesting that patients have reduced working memory capacity, or a greater demand to monitor cognitive processes, or both. Further insight into the pathophysiology of the core complaints in chronic fatigue syndrome is likely to be realised by studying the effects of exercise on other aspects of everyday functioning.

PMID: 9771781 [PubMed - indexed for MEDLINE] PMCID: PMC2170292 Free PMC Article

 

[Dolphin]

(not important) New population study that used the Chalder Fatigue Questionnaire

Determinants of fatigue and stress
Kocalevent RD, Hinz A, Brhler E, Klapp BF
BMC Research Notes 2011, 4:238
Free full text: http://www.biomedcentral.com/1756-0500/4/238

This paper reports on a general population study involving the Chalder fatigue scale (one of the primary outcome measures in the PACE Trial) and the Perceived Stress Questionnaire.

In table 1 http://www.biomedcentral.com/1756-0500/4/238/table/T1 they report on correlations between the Chalder fatigue scale and mental fatigue and physical fatigue subscales and the Perceived Stress Questionnaire and its seven subscales.

Then in table 2 http://www.biomedcentral.com/1756-0500/4/238/table/T2 , it gives the sociodemographic and health-related odds ratios of perceived stress and fatigue stratified by different categories.

Unfortunately I'm not exactly sure if they used all of the 11 questions of the Chalder fatigue scale as they say:

Assessment of Fatigue (CFS)
The CFS was developed to measure the severity of fatigue [17] and has been used in several studies. The 11-item scale was found to be reliable (Physical Fatigue: r = 0.85; Mental Fatigue: r = 0.82; Total Score: r = 0.89) and valid. Fatigue is defined as a continuous dimension as opposed to a category. Response options include: 0 = 'better than usual', 1 = 'no more than usual', 2 = 'worse than usual' and 3 = 'much worse than usual'. Symptoms that are not related specifically to fatigue but that are associated with the chronic fatigue syndrome were not included since the intention was to produce a scale that measured fatigue specifically

I have written to the author to ask. Also it is not clear what is the cut off point is to qualify as having fatigue

 

[oceanblue]

This paper reports on a general population study involving the Chalder fatigue scale (one of the primary outcome measures in the PACE Trial) and the Perceived Stress Questionnaire.
Unfortunately I'm not exactly sure if they used all of the 11 questions of the Chalder fatigue scale as they say:

I have written to the author to ask. Also it is not clear what is the cut off point is to qualify as having fatigue

Thanks. It would be great to see the mean and SD for the CFQ from this study for comparison with PACE.

 

[biophile]

Healthy sedentary controls inadequate if GET aims beyond sedentariness

Dolphin wrote:

"we recruited ... 10 healthy controls from the local community."

[PF/SF-36 = 96.5(2.4)]

- so probably not that exciting as not specifically sedentary.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2170292/pdf/v065p00541.pdf

Thanks for that additional data. Very similar figures to the healthy sedentary controls from VanNess et al 2010 (96.844.48) where "sedentary" was defined as: "Controls were required to meet the American College of Sport Medicine (ACSM) criteria for sedentary lifestyle, that is, not participating in a regular exercise program, not accumulating 30 minutes or more of moderate physical activity on most days of the week." (p2) Dolphin pointed out that the data from Blackwood et al 1998 were not specifically sedentary. However, this got me thinking and I realized that this may not matter for comparing GET at 52 weeks, because GET aims beyond sedentariness.

PACE GET in a nutshell (from skimming the manuals): The patients establish a sustainable baseline level of physical activity, set or negotiate goals with the therapist, start with light exercises, aim for "small" increases in duration of activity eg 10-20% over 1-2 weeks, stabilize at this level by toughing out any increase in symptoms as much as reasonably possible and avoid reducing activity due to symptoms (which are presumed to be the "normal" experience of increasing activity levels and resolve within days once the body gets used to the activity increase), continue this graded process until doing about 30 minutes of "light" exercise 5 times a week, when used to that level of activity then aim for increases in intensity eg 10-20% over 1-2 weeks then stabilize as previously described and then increase another 10-20% and so on until reaching target heartrate (patients can supposedly start with 40% of Predicted Maximum HR and work up to 60-75%).

The next 3 quote blocks just highlight what PACE aims for with GET, the text can be ignored safely if one does not feel like reading too much ...

(1) Additional extracts from the GET participant manual:

"This process may take anywhere from weeks to months the process is slow and steady; patience and keeping your brakes on may be just as important as increasing activity. Alongside this programme, you will be shown how to best deal with setbacks, improve your sleep and relax your muscles."

"What activity should I choose? The key to this decision is to choose a realistic, regular, and enjoyable activity. Many people start with walking because it is one of the main physical activities we undertake. Depending on how people are affected by CFS/ME and what they wish to achieve, someone might start by using physical activities around the home, while others may wish to go out for a daily walk. Those interested in sports may be more inclined to use cycling or swimming, for example."

(2) Additional extracts from the GET therapists manual:

"A goal for GET should be a clearly observable, behavioural change, not a reduction or absence of a symptoms e.g. 'Walking every day for 20 minutes', not 'no longer feeling fatigued.'"

"By week 4, most participants will be able to commence aerobic exercise."

[Long term goals (Six months or longer)] "Riding an exercise bike for twenty minutes every day."

[when GET is going well] "If the participant is progressing well, or is particularly motivated by strengthening exercises, these can be added to the routine. This is usually considered at around session 10, although may vary significantly between participants."

[towards the end of GET] "The final stage of GET is to encourage the participant to find sustainable methods of maintaining exercise, and to solve any difficulties they have had in establishing a regular exercise programme."

[after GET] "It should be explained that in order for the body to continue strengthening, and for changes to be maintained, that exercise should form a regular part of their lives from here onwards."

[after GET] "Your improvements will continue as long as you maintain your level of activity and exercise. It is crucially important not to stop exercising after discharge, but rather to continue maintaining or building upon the changes you have made. Establishing a routine of physical activity and exercise is essential to keep your good health and to prevent symptoms in future."

There is also talk of exercise equipment, joining a gym, DVD's, rowing machines, etc after GET.

(3) Additional introduction/overview statements from the GET therapist manual:

The more severely disabled group of CFS/ME patients were excluded from previous studies as the studies involved an exercise test that may have been too challenging. However due to greater levels of inactivity in the more severely disabled group, the deconditioning model should apply equally if not more to these patients.

Apart from improvements in CFS/ME and function, a major objective for GET is to undertake the amount of exercise recommended for full health and prevention of disease. The quantity of exercise recommended by the Chief Medical Officer (2004) is 30-45 minute sessions of moderate intensity physical activity at least five times a week.

As well as direct impact upon CFS/ME, exercise has also shown to have a strong role in the prevention of various diseases such as coronary heart disease, stroke, cancer, and type II diabetes, as well as reducing the risk of premature death by 20-30%. Exercise is also well known to also have positive affects upon psychological wellbeing, sleep and the maintenance of a healthy musculoskeletal system.

So the aim of GET goes beyond the threshold of sedentariness, then patients are encouraged to continue further to at least "30-45 minute sessions of moderate intensity physical activity at least five times a week" (I wonder if that is what Peter White does personally). If healthy sedentary controls underwent the same GET priniciples outlined above, many of them would probably experience impressive gains over 52 weeks. Even if CFS patients started out 50% less active than healthy but sedentary people, under the GET rationale which assumes no disease related limitations it should only take them 1-2 months to catch up, maybe 3 months at the most? The authors expect most patients will commence aerobic exercise after 4 weeks.

Yet the average 6-minute walking distance (6MWD) for the GET CFS group in PACE at 52 weeks was appalling, despite walking being the common exercise of choice for participants in the GET group. So what's going on? The "deconditioning" hypothesis of CFS is obviously faulty, out of context and mostly hot air. I know I'm preaching to the choir here, but still. Fantastic claims from smaller trials and enthusiastic proponents, about 70% of patients being helped a lot and 25% cured, versus, relatively disappointing PACE trial data = is the truth wearing off? (http://www.newyorker.com/reporting/2010/12/13/101213fa_fact_lehrer?currentPage=all). Out of interest, what is the proportion of the population who are sedentary? Here is a clue from the CDC: "Despite common knowledge that exercise is healthful, more than 60 percent of American adults are not regularly active, and 25 percent of the adult population are not active at all." (http://www.cdc.gov/nccdphp/sgr/summ.htm)

 

[Dolphin]

Good post, biophile.

Here is an extract from the Barts CF service submission on the draft NICE guidelines:

Draft text: `

6.3.6.16 When planning a programme of GET the
healthcare professional should:

* discuss with the patient ultimate goals with the
patient that are important and relevant to them. This
may be, for example a 2 x 15 minutes daily brisk
walk to the shop, a return to previous active hobby
such as cycling or gardening, or, if more severely
affected, sitting up in bed to eat a meal.

* recognise that it may take weeks, months, or even
years to achieve goals, and it is essential that the
therapy structure takes this pace of progress into
account.

SH St Bartholomew's Hospital Chronic Fatigue
Services 75 FULL 188 6.3.6.16

"....These goals should include recovery, not just
exercise and activity goals. If it takes "years" to
achieve goals, then either the goals are wrong or
the therapy is wrong. What other treatment in
medicine would take years to work? We suggest
"or even years" is deleted. If a therapy is not
helping within a few months, either the therapy or
the diagnosis or both should be reviewed and
changes considered. We suggest that this advice
is pertinent to all treatment approaches, not just
for GET...."

So Peter White and co are basically saying that goals including recovery should be expected to happen in months (and so should be expected to happen within 12 months).

 

[Angela Kennedy]

Wow. Thanks for all this biophile. Brilliant analysis!

It throws up more and more questions about the cohort, and the treatment they received (ad hoc anti-depressants etc.)

As you know- I think there was a key exclusion of neurological 'ME' sufferers (and the lack of 'seriously affected' goes some way to explaining this, possibly). There appears to be a high amount of psychiatric disorder cases selected in (if one looks at the 'SCID' it becomes clear the trial allowed for this). But WHATEVER the conditions of the cohort, the objective 6MWD WAS shockingly poor!

WHY was that? Is the question I guess. WHAT was going on with that cohort?

I feel like Hetty Wainthrop now.

 

[Graham]

That's a very handy quote! Thanks, Dolphin.

 

[Dolphin]

Wow. Thanks for all this biophile. Brilliant analysis!

It throws up more and more questions about the cohort, and the treatment they received (ad hoc anti-depressants etc.)

As you know- I think there was a key exclusion of neurological 'ME' sufferers (and the lack of 'seriously affected' goes some way to explaining this, possibly). There appears to be a high amount of psychiatric disorder cases selected in (if one looks at the 'SCID' it becomes clear the trial allowed for this). But WHATEVER the conditions of the cohort, the objective 6MWD WAS shockingly poor!

WHY was that? Is the question I guess. WHAT was going on with that cohort?

I feel like Hetty Wainthrop now.

Yes, the percentages with psychiatric disorders for the SCID were high compared to other studies in the field.
And of course there was only an improvement in the 6MWD for GET (even though, as we are saying, it was low); in CBT, there was no change compared to both SMC and APT - indeed SMC improved more numerically (i.e. it didn't reach statistical significance but was actually bigger).

 

[oceanblue]

There's an extraordinary contrast between the progress anticpated by the GET manuals (or the Bart's NICE submission - 2007?) and the paltry 6MWT gains for PACE GET. Surely they were genuinely expecting great things from PACE and the feeble trial results must have been quite a blow. I may be projecting here, but it seems to me the authors have now talked themselves into believing the PACE results were actually quite good, rather than simply spinning the results to hide their embarrassment.

 

[Dolphin]

There's an extraordinary contrast between the progress anticpated by the GET manuals (or the Bart's NICE submission - 2007?) and the paltry 6MWT gains for PACE GET. Surely they were genuinely expecting great things from PACE and the feeble trial results must have been quite a blow. I may be projecting here, but it seems to me the authors have now talked themselves into believing the PACE results were actually quite good, rather than simply spinning the results to hide their embarrassment.

It's hard to tell - Peter White always seems so sure of himself to me when, if he was really aware that the statistics could be looked at in another way, he should have more doubts. Don't know if he practices NLP - I believe Tony Blair used to - I could see how it can make one sound more convincing.

All this stuff (except the speculative first part of this message) should be relevant for the recovery paper.

 

[Esther12]

There's an extraordinary contrast between the progress anticpated by the GET manuals (or the Bart's NICE submission - 2007?) and the paltry 6MWT gains for PACE GET. Surely they were genuinely expecting great things from PACE and the feeble trial results must have been quite a blow. I may be projecting here, but it seems to me the authors have now talked themselves into believing the PACE results were actually quite good, rather than simply spinning the results to hide their embarrassment.

That they chose to try to cover up how disappointing the PACE results were with things like their absurd definition of 'normal' has fundamentally changed the way I view those researchers. I previously thought they were wrong, caught up in the own prejudices and oblivious to the harm they were causing patients - but also trying to help, and operating in a largely honest way (other than the sorts of misrepresentations which are a pretty normal part of human life).

If that had been the case, then on getting the results from PACE the press conference would have sounded more like:

"Whoops. Looks like we made a mistake. The last two decades of encouraging patients to believe recovery was under their control, or that GET and CBT were curative, looks like that was in error. We should probably start spending research money on other areas, as we've given it our best shot, and not been able to achieve much. Sorry."

Instead, we got: "Great news! CBT and GET are able to get one third of CFS patients back to normal!! *cough-cough* (It's quite 'normal' to be crippled by severe and disabling fatigue) *couch-cough*