PACE 2011 summary

*STILL UNDER CONSTRUCTION: the statistical analysis is hard to make simple*

I was asked by z to provide a simpler version of the 2011 PACE paper. This is a simplified version of what the paper says in order to help you read it. It is not what I think of the trial. It is most certainly not an endorsement of the trial. Bad science makes me angry. There’s a summary at the top and then it  follows the layout of the actual paper. It’s pretty long but you can just read whichever section(s) you’re interested in. If you want to read the original paper it’s here.


The PACE trial looked at patients who met the Oxford criteria for CFS. They were put in 4 treatment groups:

  • CBT + medical care
  • GET + medical care
  • adaptive pacing therapy + medical care
  • just medical care.

The medical care provided was not what you would just get with a GP, but more specific to living with CFS.

Patients received treatment and were assessed after a year for how they were functioning.

They scored themselves on how they felt they were doing with fatigue, how they felt they were doing physically and how they felt their health was overall.

The researchers concluded:

CBT and GET plus medical care are effective treatments for CFS. They have a moderate effect.

Adaptive pacing was no different to just medical care.

These findings apply to patients with CFS whose main symptom is fatigue.

All four treatments are safe.

Since the treatments are only moderately effective, more research into better treatments is needed. Behavioural treatments being effective does not mean the illness is psychological.

Limitations of trial:

  • Patients who could not attend hospital could not be part of the trial.
  • Results only apply to patients who were referred from their GP to other care.
  • The medical care provided in the trial to all groups is not the same as the usual care that patient’s get with a GP.
  • The most common reason for a patient not entering the trial was not actually having CFS
  • Medical care was not as closely monitored as the other therapies.
  • Those with just medical care received more medical care than those also receiving therapy.
  • Masking was not possible.
  • The ratings used to work out if the treatment had worked were self-rated by the participants and were subjective.


PACE 2011 paper

Statistical Analysis


Four groups for one year:
1. Cognitive Behavioural Therapy (CBT) plus medical care – 161 people
2. Graded Exercise Therapy (GET) plus medical care – 160 people
3. Adaptive Pacing Therapy plus medical care – 160 people
4. Just medical care – 160 people

Each group was rated for fatigue. The scores of the groups were compared.

CBT group had 3.4 points less fatigue than medical care only.
GET group had 3.2 points less fatigue than medical care only.
APT group had 0.7 points less fatigue than medical care only.

Conclusion: Adding CBT or GET to medical care moderately improves fatigue.

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Chronic Fatigue Syndrome (CFS) is being researched. Some people say this is the same as Myalgic Encephalomyelitis and others don’t. 0.2% – 2.6% of the population suffers from CFS. When untreated people are unlikely to get much better.

Therapies can make it more likely patients will get better. Some research says CBT and GET help patients. Patient groups say that they are harmful. Patient groups recommend health care and pacing.

This trial compares CBT, GET and adaptive pacing therapy on top of medical care. These three are compared to just having specialist medical care. The expected outcome was that CBT and GET would work better than pacing, and pacing would work better than just medical care.

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How patients were selected:

Oxford criteria:

  • Main symptom is fatigue
  • Significant disability
  • No psychiatric diagnosis


  • 6 or more out of 11 points on Chalder Fatigue questionnaire
  • less than 60 points on physical function subscale. This was later changed to less than 65.

Patients who were excluded:

  • under 18’s
  • at risk of self-harm
  • unable to attend hospital appointments
  • couldn’t read or speak English
  • medical needs that “made participation inappropriate”
  • had already tried PACE

Patients were also assessted via International Criteria for CFS and London Criteria for ME

Randomisation and Masking

[Masking means making sure people who are assessing the trial do not know which patients received which treatment.] This was impractical for therapists so they were not masked. Doctors and therapists giving treatment knew which patients received which treatment. The statistician and those who were not involved in treatment were masked.

Patients were sorted into different groups by computer program. This added randomisation but also made sure each group had a roughly even split of types of patient. This took into account which centre they were at, other CFS criteria, ME criteria and depression criteria. The trial team was not involved in this.

Most of the 6 centres had one therapist.

How the trial was carried out:

Therapists were trained by a therapist with experience in CFS.
Individual therapy was provided once a month.
Group therapy was provided once every three months.
Audio was recorded.

Two independent clinicians listened to recordings of the 10th session of 62 of the patients. They did not know which treatment the patient was allocated and recorded if the name of the treatment came up during the session. They rated the recordings on:

  • Therapy type
  • Sticking to the therapy manual
  • Relationship between therapist and participant.

Doctors were trained in specialist medical care. Competence was assessed and sticking to the medical care manual was monitored for most.

For each type of therapy, 10 sessions were needed to be able to analyse if it worked. For specialist medical care, 3 sessions were needed.

Sessions attended, leaving treatment, having other treatment and leaving follow-up were recorded.

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Treatments were kept the same in different places by providing manuals for doctors, therapists and participants.

Results were collected:

  • At the start
  • In the middle of therapy (12 weeks)
  • After therapy (24 weeks)
  • After 1 year

Results were self-rated by the participant, while face-to-face in the clinic.

Specialist medical care:

Participants were offered at least 3 sessions, more if it seemed they needed it.
The manual followed current good medical practice.


  • Given a leaflet explaining CFS and specialist medical care.
  • CFS was explained.
  • Generic advice given:
  • Avoid extrme activity
  • Avoid extreme rest
  • Self-help advice
  • Drugs for insomnia, pain or mood if needed.


  • Up to 14 sessions over the first 23 weeks:
    • Once a week for the first four weeks.
    • Then once every two weeks.
  • Then an additional “booster” session at 36 weeks.

These were delivered face to face, sometimes by telephone.

Adaptive Pacing Therapy (APT):

Based on “envelope theory” of CFS: CFS is seen as an organic disease which can’t be reversed by changing behaviour or thought.
CFS causes a reduced and finite amoount of energy – the “energy envelope”.

Goal of therapy: Adapt to the energy amount available.


  • Helping to plan activities to reduce or avoid fatigue.
  • Help achieve prioritised activities.
  • Help provide conditions for natural recovery.
  • Diary used to find links between activity and fatigue.
  • Working out early warning signs of too much activity.
  • Limiting stress and demands.
  • Planned rest and relaxation.
  • Alternating different activity types.
  • Not doing things which require more than 70% of perceived energy envelope.
  • Doing more activities was encouraged as long as symptoms did not get worse.

A manual was created to describe this treatment as one did not exist.
APT was provided by occupational therapists.

Cognitive Behavioural Therapy (CBT):

Based on “fear avoidance theory” of CFS: CFS is seen as reversible. CFS caused by avoiding activity due to fear of activity.

Goal of therapy: change behaviour and thoughts which cause symptoms. Symptoms should then get better.


  • Challenge unhelpful thoughts by carrying out activity.
    Eg: challenging fears of activity or fears of symptoms.
  • Make baseline of rest and regular sleep pattern.
  • Slow increases in physical and mental activity.
  • Help with social and emotional problems.

The manual used was based on previous trials.
CBT was provided by psychologists and nurse therapists.

Graded Exercise Therapy (GET):

Based on “deconditioning and exercise intolerance theories”: CFS continues because activity is avoided and the body is not used to activity. Because the body is not used to it, activity seems even harder, so is avoided.
Goal of therapy: slowly increase physical activity and so get body used to it. Fatigue and disability should then get better.


  • Make a baseline of physical activity which can be managed.
  • Increase time spent in physical activity.
  • Aim for 30 minutes of light exercise 5 times a week.
  • Then increase intensity of exercise.

The manual used was based on previous trials.
GET was provided by physiotherapists or exercise physiologists.

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Trial Outcomes:

Primary outcomes were worked out from:

  • Chalder Fatigue Questionnaire.
    Fatigue scores from 0 to 33. A low number is less fatigue.
    Each question was rated 0-3 by the patient. Before analysis the scores were adjusted to 0-1. This made the fatigue scores from 0 to 11.
  • Physical function subscale: 0-100, high number is better function.

Safety outcomes were worked out from:

Two doctors and a psychiatrist who all specialise in CFS reviewed all bad events/reactions on their own. They did not know which patient had which treatment when looking at events. The things they reviewed were:

  • Bad reactions to trial treatments
  • Getting much worse
  • Dropping out
  • Any medical change
  • Any reported disease or disorder

They then were told which patient had which treatment and used that to work out if these events were caused by the treatment.

A “serious deterioration in health” was recorded if:

  • The physical function decreased by 20.
  • The participant left after 8 weeks because they felt worse.
  • A very bad reaction to treatment.

Secondary outcomes were worked out from:

A scale recording the change in health from the original rating: “Clinical global impression scale rating”). This was self-reported by the patient. It was rated with 7 options. These 7 options were later converted into 3 options (negative change, not much change, positive change).

  • Disability based on a scale of work and social adjustment
  • Distance in metres walked over 6 minutes
  • Score for distorbed sleep
  • Score for hospital anxiety and depression
  • Number of CFS symptoms
  • Individual symptoms from the international criteria
    • post-exertional malaise
    • poor concentration
    • poor memory

Before treatment, the participants rated whether they thought the treatment would work. This was rated with 5 points but later made into 4.
After one year, participants rated how happy they were with treatment received. This was rated with 7 points but later made into 3 (satisfied, neutral, dissatisfied)

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Statistical analysis:

[Much of this is difficult to make readable because its statistical analysis. Sorry. If you want to look into this I really recommend reading the paper. This should at least give you a rough idea of what they did]

At least 150 patients per group meant that enough patients could be compared for each type of therapy, with room for 10% of patients to drop out.

At first it was planned to measure improvement by meeting a certain score or achieving 50% change. This was later changed to continuous scores to help analysis.

20 patients missed one or two items on the rating scale. The average of their ratings was used for the missing value.

Continuous variables were summarised with the mean or median score. They converted the continuous variable into categories and used the frequencies and proportions.

The ratings from the participants were compared to the ratings from the independent analysers to see how similar the ratings were. Therapy received, relationship with therapist and sticking with the therapy were compared using Kruskal-Wallis tests (a test to see if the differences have any meaning or just happened randomly)

Categorical variables were compared using Fisher’s exact test (a test to see if the results have any meaning or just happened randomly).

A meaningful difference in result was calculated as:

  • 2 points difference in fatigue score
  • 8 points difference in physical functioning score

They analysed:

  • How many participants had improved by a meaningful difference.
  • How many participants scored in the “normal range” after a year. The normal range was:
  • 18 or less fatigue (worked out from adults who went to the GP: mean + 1 standard deviation)
  • 60 or more for physical function (worked out from working age adults: mean – 1 standard deviation)

[ Section still to be completed ]


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3158 patients were looked at to enter the trial. 641 were recruited. Reasons for not being recruited:

  • Not meeting Oxford criteria for CFS (most common)
  • Too high physical function
  • Currently in a CFS episode
  • Could not carry out the trial treatment
  • Trial treatment not suitable
  • Psychiatric issue
  • Fatigue score too low
  • Too young
  • Could not read or speak English well enough
  • Did not provide trial consent

The four groups had a similar mix of patients. The one exception was those just receiving medical care had had CFS for less long on average.


Patient demographics

Treatment received

Those just receiving medical care received more sessions of medical care than other groups. All the groups had at least 85% of participants get enough sessions to be “adequate treatment”.

Patients had high expectations of APT and GET, lower of CBT and just medical care.

Most patients receiving therapy plus medical care were satisfied with their treatment.

Half of patients just receiving medical care were satisfied with their treatment.

Only one therapy session was not correctly identified by the independent assessors. But the therapy type was revealed in 40% of those assessed. The independent assessment was similar to patient reported results. All therapists assessed stuck well to the manuals.


Treatment details

Primary outcomes

Adjusted scores showed:

  • Less fatigue and better physical function in CBT and GET.
  • No difference between adaptive pacing and just receiving medical care.

There was no effect from attending the same therapist. There was no difference in how effective the treatment seemed based on whether the participants met different criteria:

  • international criteria for CFS
  • London criteria for ME
  • depressive disorder.




The percentage of patients who had improved fatigue scores by at least 2 points and improved physical function scores of at least 8:

  • Adaptive pacing: 42%
  • CBT: 59%
  • GET: 61%
  • Medical care only: 45%

The percentage of patients who were within normal ranges [as defined in this trial] of fatigue and physical functioning after a year:

  • Adaptive pacing: 16%
  • CBT: 30%
  • GET: 28%
  • Medical care only: 15%

Safety outcomes

Rates did not differ between treatment groups.

Non-serious bad events were common. CBT patients reported least.

Serious events, serious deterioration and serious bad reactions were uncommon. GET patients reported most.


Safety outcomes

Secondary outcomes

Clinical global impression ratings

Patients self-reported their personal impression of their health. More patients from CBT and GET reported “much better” or “very much better”. Less than 9% of every group rated “much worse” or “very much worse”.


Self-rated health

CBT and GET had better scores for:

  • work and social adjustment
  • sleep disturbance
  • depression
  • post-exertional malaise

Adaptive pacing had better scores for anxiety.

CBT had fewer CFS symptoms reported.

GET had better scores for how far patients could walk in 6 minutes.

Concentration and memory did not differ between groups.

Adaptive pacing groups and just receiving medical care caused the same results.


Secondary outcomes

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GET and CBT reduced fatigue and improved physical function the best. Adaptive pacing was no different to just medical care.

CBT and GET plus medical care are effective treatments for CFS. They have a moderate effect.

Adaptive Pacing therapy plus medical care is no more effective than just receiving medical care.

These findings apply to patients with CFS whose main symptom is fatigue.

CBT and GET were better than adaptive pacing in almost every measure.

GET and CBT reducing post-exertional malaise more than just medical care is important as patients wish to avoid this symptom.

Antidepressants were used across all groups so differences are unlikely to be from these.

CBT was best for depressed patients. GET was best for improving walking distance in 6 minutes.

There were no safety differences between groups. GET having more serious bad events was not considered related to treatment. All four treatments are safe.

There was more improvement from medical care than expected. There was less improvement from adaptive pacing than expected. Patient satisfaction was no different to other groups. The basic difference between pacing and CBT/GET is that it says to adapt to the illness. These results do not show pacing to be a good treatment for CFS.

Since the treatments are only moderately effective, more research into better treatments is needed. Behavioural treatments being effective does not mean the illness is psychological.

Strengths of trial:

  • low dropouts
  • patients stuck with treatment
  • clinicians were competent and followed the manuals
  • high patient satisfaction
  • good patient-therapist relationship
  • works for patients with CFS or ME who have fatigue as the main symptom

Limitations of trial:

  • Patients who could not attend hospital could not be part of the trial.
  • Results only apply to patients who were referred from their GP to other care.
  • The medical care provided in the trial to all groups is not the same as the usual care that patient’s get with a GP.
  • The most common reason for a patient not entering the trial was not actually having CFS
  • Medical care was not as closely monitored as the other therapies.
  • Those with just medical care received more medical care than those also receiving therapy.
  • Masking was not possible.
  • The ratings used to work out if the treatment had worked were self-rated by the participants and were subjective.

This summary is based entirely on the paper “Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial” by P.D. White et al, published in The Lancet 2011, accessed November 2015.

Tables and graphs are taken directly from the article.


Clinical exercise testing in CFS/ME research and treatment

This is a summary of the (rather long) lecture from the CFIDS conference in Sweden this week; “Clinical exercise testing in CFS/ME research and treatment“. I have omitted a lot of the discussion on the advantages/disadvantages of various scientific methods etc. and stuck mainly to the items that I would assume a non-scientific interested person would wish to know. If you’re of a scientific bent, you would probably get more benefit from watching the actual lecture. All credit to Professor Christopher R Snell of the Pacific Fatigue Laboratory, California (USA).

If you’re a sufferer, I recommend watching from 54:00 through to 59:20 – they go through a brief summary of energy conserving techniques, which could be very useful! Following this there is a case study of how they applied some of these techniques to a 17 year old sufferer to allow her to manage the condition better.

Clinical exercise testing in CFS/ME research and treatment: A summary

On an exercise test where a person has to exercise until they are exhausted, a healthy person will recover usually within a day, definitely within 48 hours (on the outside). When they did this with CFS patients, they had only one person recover within 48 hours – the average recovery was 4 days.

CFS patients also had symptom flares as a result of this test.

There are problems with the PACE trial:
– they very selectively reported results
– they only took high-functioning CFS patients
– they used the 6-minute walking test (see below)
– patients at the end of the trial, were still walking at a severely disabled speed, even when they had improved the distance they could walk. If a patient who needed a heart transplant could only walk this speed due to a lung problem, they would not be allowed onto the transplant list because they would not be deemed well enough to actually survive.
– there is no mention of any improved functioning in any other area for any of the trial participants

There are problems with the 6-minute walking test (as used in the PACE trial as a measure of functioning) and other similar tests
– they assume that the patient does not exercise to exhaustion, or anywhere near exhaustion. All the understanding of the results are based on the assumption that it was just a casual exercise experience that they could easily repeat.
– it does not work for specific groups of unhealthy people, it is designed only for a healthy population, so results from an unhealthy group can’t be interpreted validly. This is because they rely on the heart rate as a measure of energy production, but the way the heart rate and energy production are linked in a healthy person is not necessarily the same in a sick person. Many studies in fact show that the link between them in certain diseases is very different – meaning you cannot rely on these tests in sick individuals, without first carrying out studies to determine what the connection is.
– the american heart association says not to use tests with heart-rate measures, as many people use heart-rate controlling medication (eg: for POTS, migraines)

The best way to assess physical function is to use “cardio-pulmonary exercise testing”, which is to measure:
– oxygen consumption (as oxygen is used directly to produce energy, this will always be a correct measure). This is effected by lungs, heart and muscles.
– the “anaerobic threshold” – which is the point at which the carbon dioxide you breathe out is greater than the oxygen you take in. In a healthy person this is 50-60% of max. oxygen consumption; in an athlete it may be as high as 90%. In CFS patients it is very very low, and going above it makes you worse – and is very easy to do
– you can prove beyond doubt that someone is not faking these results because you are measuring the amounts of oxygen and carbon dioxide in the air they breathe in and out.
– you can establish beyond doubt that the persons capabilities in the test have nothing to do with motivation/effort because the “effort” of the person is shown in the oxygen intake/carbon dioxide given out
– these are a good measure of function, they are very reliable and accurate
– there are alreasy established measures of this for many other healthy people and disease states, meaning you can compare ME patients to others easily

Exercise will not cure ME/CFS. But – people who do not exercise will suffer the effects of a sedentary lifestyle, so if you can do some exercise without making symptoms worse, it is probably beneficial to do so

Post exertional malaise occurs across all the spectrum of ME/CFS patients – regardless of how severe they are
It does not show up in an single exercise test – you need to test again (they do it 24 hours later). This allows them to measure the post-exertional effect. (Many ME/CFS patients could be assessed as normal on a single test, due to eg: having rested beforehand, it is the second test which shows they are ill)
It is hard to separate the effects of deconditioning from the effects of CFS with a single test – but with multiple tests you can see what CFS has done.
At 37 minutes there is a table of results for ME patients

The second test shows:
– ME/CFS patients do worse on the second test; they are significantly worse (in terms both of workload they accomplish, and the oxygen/anaerobic measures)
– non-ME/CFS patient will improve on the second test (graph at 42mins).
– ME/CFS patients have a drop in the oxygen consumption, but a much much worse drop in the amount of work actually achieved. This shows that the exercise on the second test is less effcient
– the drop in peak-oxygen consumption is actually less for severe patients than for milder patients; but severe patients start out with a much lower oxygen consumption than a milder patient.
– the drop in workload done is more in severe patients than milder patients
– The theory is that there is a basic level of oxygen consumption that you need to survive, and the more severe you are the closer you are to this base level. So severe patients cannot drop any lower or they would die, so they reduce workload instead.
This is a reproducable, reliable test which shows the extent of the post-exertional malaise; other research groups have replicated these results

Their tests show objectively for CFS patients:
– an atypical recovery
– an abnormal stress-test
– post exertional malaise

There are many theories as to why post-exertional malaise occurs

Their research shows ME/CFS patients
– have a reduced physical working capability
– the aerobic energy generation (the production of energy in the presence of oxygen) is impaired
– activity exacerbates symptoms ( every ME/CFS patient has post exertional malaise)

Their research can be used as an objective proof of disability (for example, for disability assessments and clinical trials)
It is quantifiable – ie: it can measure accurately to a degree how ill the patient is
It reveals abnormality across many systems

Cognitive behavioural therapy is not a cure for ME/CFS – but it can be useful to help patients manage/adjust to their illness

ME patients can go a very long way into the anaerobic threshold (longer than most people manage) because they have adjusted to being ill; but this results in huge PEM. So short-term, patients can often manage a lot more than they can manage long-term.

Avoiding activities above the anaerobic threshold will help patients avoid PEM
– heart rate monitors can help; they are set to go off just before you hit the anaerobic threshold, to get you to rest instead of using too much energy
– activity logs can help; you can identify activities which make you worse (what activities make you ill? How do you feel the next day? Do you get PEM? Can you carry out other normal activities and these activities?)
– “rates of perceived exertion” can help; this is a fancy way of saying, if it feels like a lot of effort, it is a lot of effort – stop!
Resting will help recovery from going into the anaerobic threshold
If you go above the anaerobic threshold, you will have to pay back far more energy

Physiotherapy can help – but physios often need to be re-trained to understand ME/CFS
– reconditioning will not work with ME/CFS patients

They have a therapy called “energy conservation therapy” – I think this is basically working out how to manage your life now with less energy. It involves
– pacing
– body positioning (ie: sit instead of stand to use less energy)
– protecting joints
– using assistive devices
– planning activities (to make sure you don’t over-exert)
– using any energy saving thing you can do etc.

They also have a “theraputic exercise program” – (nothing like GET!) – this can be aided by trained physios
– learning to breathe properly
– training the anaerobic system, not the aerobic system
– exercise must be recovered from within 24 hours – if you take longer than that to recover, it is harming you, not helping
– stretching
– only doing a little bit at a time
– only ever increase amounts if you aren’t experiencing symptom increase – decrease amounts if you experience symptoms

He closed with the comment: “It doesn’t really matter what you call it, there are hundreds and thousands of people who are really really sick; if the medical profession is not helping them, their government representatives are not helping them; they need help urgently.”

Nature “Brain imaging: fMRI 2.0”

This is a fog-free translation of the article “Brain Imaging: fMRI 2.0” from Nature magazine. Translated on request :D

Oxygen-rich blood has magnetic properties so they can use a giant magnet to track the flow of blood through the brain; this is called an fMRI. Where there is increased blood flow, this shows increased brain activity; decreased blood flow shows decreased activity. This is great because they used to have to inject radioactive stuff into you to track brain activity and now they don’t.

Because it measures blood flow in the brain and not what the brain is doing directly, it’s not perfect; it can’t tell what brain cells are actually doing. Also the fact that blood flow in the brain fluxuates naturally anyway can make interpreting results difficult and makes it easier to misunderstand or misuse the results.

They also don’t know whether blood flow shows what the brain is doing now, or what it’s preparing to do, or what it was doing, or some other things as yet undiscovered. It’s better to measure directly what brain cells are doing; so some people are investigating measuring the activity of each cell individually. They think they can do that because brain cells have electrical activity; and electrical activity produces magnetic activity. So with really sensetive magnets tuned just right, they might be able to measure it.

It’s hard to use fMRI pictures to tell what parts of the brain are associated with what and why, because you just get a general idea of “the front bit is doing something” – but you don’t know if it’s doing what you think it’s doing or reading the screen or imagining a holiday etc. Scientists want to find out how parts of the brain communicate with each other. Some folk are, instead of squashing all the data they get from an fMRI into one picture, looking at it bit by bit to see the pattern of activity. Looking at lots of patterns allows them to identify the brains response to certain things, so for example they know a certain pattern is a response to an image of a bird.

fMRIs pick up a lot of useless background noise that is meaningless, and this needs to be filtered from the meaningful data. Scientists are thus working on ways to get more meaningful data and less noise; some ways are by using stronger magnets or injecting a substance into the blood which reacts better to magnets. They are also working on the best ways to filter the meaningful data from the meaningless noise.

At the moment most fMRI data is an average of many, many scans of lots of people, which gives a better chance of spotting the pattern of what the brain is doing. Obviously it would be great if you could use an fMRI in a hospital setting to analyse an individual patient’s brain to see what is going on – not currently possible. Scientists are experimenting with collecting large samples of fMRI data on various people and using them as a comparison base, so they can compare one persons fMRI to this huge database and be able to tell what is going on. Right now, you can’t use an fMRI to analyse what is going on in one persons brain, because they can’t understand what it is saying without having lots of people to compare it to.


Boots WebMD has a nice little overview of CFS that is very readable (although page 11 is sucky – studies actually show that the opposite is true, GET harms CFSers, and the thing on page 6 about it not being contagious is also probably false: it can occur in outbreaks and be passed on via blood transfusion).

CFS on ABC Melbourne

ABC Melbourne have done a short thingy on CFS. Worth a listen. (

Here’s what they say:

– the view “just get over it” is the worst possible attitude
– calling it “fatigue” in the name is misleading – it’s way worse
– no single test for diagnosis; diagnosis requires understanding condition; some tests that suggest it
– no treatment, just management strategies
– lots of unhelpful things you can do!
– “chronic fatigue” is not “chronic fatigue syndrome”
– predominantly 20-30s, but all people get it
– 10% of people who get glandular fever develop CFS from it
– CFS can follow other viruses too
– CFS includes pain, sleep disturbance, problems thinking, problems maintaining blood pressure, immune symptoms (hence syndrome)
– devastating illness
– some overlap with depression (so you need a doctor who understands both to diagnose) and you can have both CFS and depression

Zurich studies suggest muscle fatigue signals, like disordered pain signals, start in brain

Us ME/CFS sufferers love good science. Not the decide-the-results-beforehand type of science that seems to pervade the world of ME research in the west; no, we like the kind of real work-out-what’s-happening science that actually investigates what’s going on! We appreciate real science. Unfortunately, due to the rapid deteriation of our brains (like glasses in a coffee-shop in January, they fog up pretty fast), it’s hard to read scientific articles and take in what they are saying. So, as an aid to myself as much as anyone else, I want to `translate’ some papers/medical articles etc. into a semi-readable form. Here goes!

This is a less confusing version of Zurich studies suggest muscle fatigue signals, like disordered pain signals, start in brain

So: They break down the ability to use your muscles into 3 areas: how much you want to use them, how tired they actually are, and how tired your brain thinks they are. In the past they have just been looking at the actual fatigue of the muscle, and not what the brain thinks is going on – but this study looks at what the brain thinks is going on instead.

First study:
In order for your brain to control your muscles, it needs to send signals to them and also receive signals from them, so it knows what is going on. The first study they did showed that when your muscles get physically tired, they send signals to your brain to tell it this. These signals are telling your brain that it shouldn’t be doing so much work. They then anaethitised the spinal cord (ie: put it to sleep/massive painkillers), and found that this interrupted some of the signals; so your brain doesn’t realise how tired your muslces are getting when it’s under the effect of a strong pain-killer.

Second study:
They used super-fancy equipment to take photos of the brain (basically an MRI which shows what parts of the brain are active). They took the images of the brain when the body had been doing enough strenuous exercise that the brain was about to tell it to stop. The active areas at that point should be the parts that are going to tell it to stop. It turns out that these parts are quite `basic’ ones which analyse threatening situations.

Third study:
They looked at how much communication was going on between these parts of the brain to work out what parts control what’s going on. They discovered that one part (‘insular cortex’) gets a lot more active the more fatigue messages are sent from the muscles to the brain. It gets active by communicating with the part of the brain which controls movement of the muscles. So, this shows that the insular cortex is controlling (to some extent) whether the brain thinks you are too fatigued or not.

Overall results:
The brain has a huge influence on muscle fatigue, in that it has to deal with the signals coming from the muscles and whether the muscles are too fatigued to do more work. This will hopefully help them to discover two things: 1) new ways to improve performance of muscles and 2) why muscles are perceived to be so fatigued with certain illnesses, when they can’t find much physical reason for it.