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(Australia) Story in Weekend Australian today on CFS and PACE study

Dolphin

Senior Member
Messages
17,567
I don't agree with some of the claims of efficacy and safety made in this article. And when they say that 30% recovered, it's the weirdest definition of recovery you're likely to come across. Anyway thanks to those in the ME/CFS community (I don't count Andrew Lloyd in that) for speaking to the journalist, etc.

Edition 5 - Weekend Professional

SAT 26 MAR 2011, Page 011
Putting exercise through its paces
By TONY KIRBY


A new study has rekindled controversy over the treatment of chronic
fatigue syndrome

A PROMISING career as a barrister awaited Peter Evans until, at 27, he was
struck down by a virus.

The incident began a 17-year period of peaks and troughs in mood, energy
and general health: a pattern all too familiar to the roughly 180,000
Australians suffering from chronic fatigue syndrome, also known as myalgic
encephalomyelitis.

Evans -- who was previously active and healthy -- has had his life upended
by his illness. He has been left with repetitive bouts of poor sleep and
problems with memory and concentration, in addition to the near-continuous
fatigue associated with ME-CFS.

Despite a three-year period of improvement, Evans, of Brisbane, relapsed
in 2004.

``Now I can only do a very small amount of part-time work,'' he says.

Evans lives under financial constraints and has found forming long-lasting
relationships nigh-on impossible. He has no children.

ME-CFS is generally defined by persistent fatigue unrelated to, but often
worsened by, exertion, with other possible symptoms, for at least six months.
The condition has long been controversial, in part because of disputes over
whether its cause is physiological, psychological or both.

Now patients such as Evans, and the organisations that represent them, are
up in arms over results from a recently published landmark trial that they say
could lead to patients receiving treatments that make them worse instead of
better.

Some patients fear the $8 million PACE trial, published in British medical
journal The Lancet earlier this year, will put pressure on sufferers to be more
physically active than is good for them, possibly causing relapse.
The trial looked at 640 British patients, who all received specialist
medical care with a hospital-based specialist.

They then received one of three treatments on top of this.

The first, adaptive pacing therapy, generally preferred by ME-CFS patients
groups, encourages patients to fit their activity level to their energy limits,
identifying and so avoiding activities that worsen their symptoms.

The second, cognitive behavioural therapy, is based on the premise that a
fear of engaging in activity, and avoidance of activity interact with
physiological processes to perpetuate fatigue.

The third treatment, graded exercise therapy, helps patients to gradually
rebuild their physical capability through increasing exercise.

A fourth group received only specialist medical care.

Sixty per cent of patients who had cognitive behavioural therapy or
exercise therapy improved, and about one-third recovered sufficiently to lead
normal lives, twice as many as in the pacing therapy group.

Serious adverse reactions to treatment were very low in all groups,
proving, the authors say, the treatments are equally safe.

Patient groups have been mostly but not universally negative. In Britain,
Action for ME disputes the findings, but the Association of Young People with ME
welcomes them.

Penny Abrahams, the chief executive of ME-CFS Australia, has many
criticisms of PACE.

She says the study used little-known guidelines to select patients instead
of more condition-specific Canadian guidelines that exclude patients with
anxiety and depression. This meant participants did not necessarily have ME-CFS.
Abrahams says the Oxford guidelines included patients with anxiety or
depression, despite the fact both conditions can cause fatigue and are helped by
exercise therapy and cognitive therapy -- potentially skewing the findings in
favour of these treatments.

One of the PACE authors, Michael Sharpe of the University of Edinburgh,
counters that the Oxford criteria have been used frequently in treatment
research, are simple and require chronic disabling fatigue as the main symptom.
Sharpe agrees that many patients in PACE were anxious or depressed, but
says the study found a similar treatment response in patients who did not have
these psychiatric diagnoses.

``This suggests that the criteria used do not determine response to these
treatments,'' he says.

Critics warn that the PACE findings cannot be applied to all patients
because they excluded severely affected housebound patients, and children.

``It would be reasonable to expect that all groups within the ME-CFS
population would have been included,'' Abrahams says.

But Andrew Lloyd, who runs the fatigue section of the Lifestyle Clinic at
the University of NSW, believes that PACE is representative of at least
three-quarters of ME-CFS patients in Australia, namely young or middle-aged
adults who are not housebound. Lloyd is generally positive about PACE but has
reservations: the moderate benefit and the overlapping of the three therapies
making it hard to conclude some are better or worse than others.

His clinic provides a 12-week individualised and mostly home-based
program. A psychologist assesses fatigue, mood, sleep disturbance and pain, and
an exercise physiologist does a functional assessment.

Lloyd is surprised at the negative reaction to PACE from ME-CFS Australia.

``Our clinic has been oversubscribed, so it's clear that patients are
benefiting from these treatments,'' he says.

Lloyd believes any harm comes from patients not sticking to their agreed
plan.

Abrahams and Evans disagree, and say there are countless examples of
people following their plan, then crashing with even worse symptoms.

Christine Hunter of the Alison Hunter Memorial Foundation, an advocacy
organisation, says PACE's findings reflect the fact it is easier to get funding
for public psychiatric-based research than more expensive biomedical research.

``As a physiotherapist, I know that many people with ME could not enrol in
an exercise program,'' Hunter says.

``PACE participants agreed they were willing to exercise, and this
influences the findings.''

Lloyd says the relative lack of government funding for ME-CFS stems partly
from highly competitive grant tendering to the National Health and Medical
Research Council.

``A lot of ME-CFS research proposals don't stand up,'' he says. ``ME-CFS
also lacks a critical mass of big-name researchers prepared to fully commit to
researching it.''

Future priorities have been outlined by the International ME Research
Collaboration, comprising experts in neuroscience, immunology, primary care and
public health.

Caption: SAM MOOY
Andrew Lloyd says patients must stick to agreed treatment plans
Illus: Photo
IllusBy: SAM MOOY
Column: CareerOne / Careers / Employment
Health
Weekend Professional
Section: REVIEW
 

insearchof

Senior Member
Messages
598
Thanks very much for posting this Dolphin. I missed out on getting the paper, so I appreciate the post.

ISO
 

Dolphin

Senior Member
Messages
17,567
A quick comment on the one third which this article claims went on to live a normal life (some people may wonder where this statistic came from)

In the published protocol paper http://www.biomedcentral.com/1471-2377/7/6 , a
recovered group was specified as one of the secondary outcome measures:
----
4. "Recovery" will be defined by meeting all four of the following criteria: (i)
a Chalder Fatigue Questionnaire score of 3 or less [27], (ii) SF-36 physical
Function score of 85 or above [47,48], (iii) a CGI score of 1 [45], and (iv) the
participant no longer meets Oxford criteria for CFS [2], CDC criteria for CFS
[1] or the London criteria for ME [40].
----
The Lancet paper did not include this information. I think it's reasonable to
assume this was because the numbers were not particularly impressive.

Similarly, in the published protocol paper
http://www.biomedcentral.com/1471-2377/7/6, "improvers" were defined as
follows:
--------
Primary outcome measures - Primary efficacy measures

Since we are interested in changes in both symptoms and disability we have
chosen to designate both the symptoms of fatigue and physical function as
primary outcomes. This is because it is possible that a specific treatment may
relieve symptoms without reducing disability, or vice versa. Both these measures
will be self-rated.

The 11 item Chalder Fatigue Questionnaire measures the severity of symptomatic
fatigue [27], and has been the most frequently used measure of fatigue in most
previous trials of these interventions. We will use the 0,0,1,1 item scores to
allow a possible score of between 0 and 11. A positive outcome will be a 50%
reduction in fatigue score, or a score of 3 or less, this threshold having been
previously shown to indicate normal fatigue [27].

The SF-36 physical function sub-scale [29] measures physical function, and has
often been used as a primary outcome measure in trials of CBT and GET. We will
count a score of 75 (out of a maximum of 100) or more, or a 50% increase from
baseline in SF-36 sub-scale score as a positive outcome. A score of 70 is about
one standard deviation below the mean score (about 85, depending on the study)
for the UK adult population [51,52].

Those participants who improve in both primary outcome measures will be regarded
as overall improvers.
-------
Again, this information was not given in the final paper.

The one third refers to those who scored in the "normal range" on the Chalder
Fatigue Scale and the SF-36 Physical Functioning Scale (actually it was 30% for
CBT, 28% for GET, along with 16% for APT and 15% for SMC). However the
thresholds they chose were unusual and very debatable: a SF-36 PF score of 60 or
more and a Chalder Fatigue Scale (Likert scoring) of 18 are less. To qualify for
participation, one had to have a SF-36 PF score of 65 or more (60 for a period)
along with a Chalder Fatigue Scale (bimodal scoring) so one's scores might not
change from beginning to end and one could still be counted in this group!

In the accompanying editorial, Bleijenberg & Knoop describes this group as the
recovered group. This description of the "one third"/"30%" has recovered has
been used in a few lay media articles unfortunately.

These sorts of issues were discussed in Cort's article and in the comments underneath at: http://forums.phoenixrising.me/content.php?369-A-Hitch-in-its-Step

For a more thorough discussion, try: http://forums.phoenixrising.me/showthread.php?4926-PACE-Trial-and-PACE-Trial-Protocol (message #69 on is for after the Lancet paper came out)
 

Tulip

Guest
Messages
437
Geez someone better tell my body that the exercise I have been doing for YEARS (yoga and walking) and my go get em attitude should have cured me!!.

What a joke. God I hope karma comes back and slaps these quacks one day.
 

insearchof

Senior Member
Messages
598
Dophin, was this article available or accessible online, and if so does any one have a link? I would be interested in viewing any comments and or letters that this piece may have generated.
Thanks
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Not that bad an article. Though it did fall for their sleight of hand of replacing pacing with folger's crystals labelled "adaptive pacing". Lloyd and Sharpe: scumbags par excellence.
 

Dolphin

Senior Member
Messages
17,567
Dophin, was this article available or accessible online, and if so does any one have a link? I would be interested in viewing any comments and or letters that this piece may have generated.
Thanks
The version I saw had been scanned in by somebody.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Andrew Lloyd says patients must stick to agreed treatment plans

So its obviously a case of blame the patient when the patient actually cant continue following the plan due to declining health.

Im so glad the ME/CFS society has spoken out on this as in the past they put an article of Andrew Lloyds in their journal which I found quite offensive to us.

(It was at that point I then dropped out of the society and didnt renew my membership as I was so offended by bullcrap of his being put into the CFS/ME societies journal and unfortunately the great one the SA society used to have (never seen any crap articles in the SA one) had been merged into the other one from other state).

He's no so called CFS/ME specialist to be sharing his views... if we want to hear any Wessely views.. we just need to speak to most doctors
 

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
At least this article presents both sides instead of trumpeting that PACE proves that exercise will cure CFS. File this one under "could be worse."
 

insearchof

Senior Member
Messages
598
Hi Taniaaust1

I dont have a problem with them publishing articles like that, because sometimes it is the only way I come across them and know what the position is here in Australia. It also gives members an opportunity to respond or take some sort of action against the existing state of play.

More concerning to me, is their selective advocacy policy. Whilst they decide to speak out and raise awareness on PACE they remain totally mute on XMRV.
 

Dolphin

Senior Member
Messages
17,567
(It was at that point I then dropped out of the society and didnt renew my membership as I was so offended by bullcrap of his being put into the CFS/ME societies journal and unfortunately the great one the SA society used to have (never seen any crap articles in the SA one) had been merged into the other one from other state).
The SA group were using Emerge for a while but have now gone back to their own magazine.