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.

M.E. | Depression

m12bbThe #May12BlogBomb is back! Hurrah!

This year I want to talk about two very different illnesses, both of which I’ve had experience with at different times in my life: Myalgic Encephalomyelitis, and depression*.

The whole M.E. vs depression thing is a controversial topic- amongst people who are unfamiliar with both diseases at least. And that’s understandable in a way. From the outside, mild-moderate M.E. (or Fibromyalgia, or Lyme Disease) can look very similar to mild-moderate depression: lack of participation, lack of energy, increased need for rest, even things like physical pain. Even more confusing, you can have depression and then completely separate to that develop M.E. (for example from a viral infection, as I did), or- like with all chronic illnesses- living with M.E. can sometimes cause a reactive depression.

However, they are very different diseases, with very different, almost opposing treatments. That’s why its so important to raise understanding of what those differences are and how to treat each disease. So here are a few basic differentiations for you:

1. With M.E., you have a strong desire to carry out activities, but are physically restricted from doing so.
With depression, you have no physical inability or backlash from activity, but have a reduced desire to carry activities out.

It’s especially important to note that people who have learned to manage their M.E. might appear to not have the desire to do things due to their superior desire to actually recover – sorting the motivation is key.

2. With depression, carrying out vigorous activity (especially exercise) generally results in short-term improvement of the condition.
With M.E., carrying out vigorous activity (especially exercise) generally results in short-term worsening of the condition – with effects often delayed by a day or so.

3. With M.E., regular physical exercise which pushes the person’s current activity ability results in long-term worsening of the condition.
With depression, regular physical exercise which pushes the person’s current activity ability generally results in long-term improvement of the condition.

4. With depression, pushing a person to do activities such as socialising which they feel incapable of, leads them to realise they are capable and can help them improve.
With M.E., pushing a person to do activities such as socialising which they feel incapable of leads them to have severe backlash and can worsen their illness.

5. M.E. is managed with lots of rest, careful pacing of activities, and sometimes the help of physical disability aids and painkillers. This can sometimes lead to recovery.
Depression is managed with psychological treatments/methods such as CBT and intentional carrying out of activities which are fulfilling and/or enjoyable. This can sometimes lead to recovery.

6. Depression is often successfully managed with anti-depressant medication, believed to correct chemical imbalances in the brain. This can sometimes lead to recovery, although often a patient may have to stay on these long-term.
M.E. is never successfully managed with anti-depressant medication. Painkillers** are helpful in managing the disease, but don’t lead to recovery. There are however promising drug trials with things such as chemotherapy treatments, which show long-term improvement whilst remaining on the drug.

7. The exact mechanism of M.E. is unknown, but is often triggered by viral infection or environmental toxins. The central nervous system, endocrine system, digestive system, circulatory system and more can all be adversely affected by the disease.
Depression is caused by a complicated mix of environmental and physical factors, often (but not always) triggered by adverse life events such as abuse, personal tragedy or long-term stress. Depression can cause changes in the body too, effecting the thoughts and emotions of the sufferer.

8. Depression is extremely emotionally painful, although activity can provide some respite and improvement for this. The exact mechanism is unknown, but as the brain struggles to deal with the levels of emotional torment it can cause physical pain too, such as a sore back or stomach.
M.E. is extremely physically painful – muscle pain is the most cited and often most severe symptom of sufferers. This constant physical pain, made worse by activity, can cause emotional pain to the sufferer as they struggle to deal with the intensity and unrelenting nature of it.

As you can see, treating one disease mistakenly as the other can have terrible consequences for the sufferer. That’s why it’s so important to spread understanding of the differences. There are however also important similarities between the two illnesses, which are equally vital to understand. For example:

1. Both depression and M.E. are long-term serious life-altering illnesses.

2. Both people with M.E. and people with depression are often socially isolated, due to the illness making it difficult for them to carry out social activities. Different reasons, same result.

3. Both depression and M.E. are often misunderstood illnesses. People assume you can think your way positively out of them, or just “pull your socks up” and get better- but in actual fact, they both require careful management and hard life changes to see any improvement.

4. Both M.E. and depression can be fatal.

5. Both depression and M.E. often require increased medical and social support for the sufferer.

6. Both M.E. and depression can cause changes in the physical structure of the brain. Different changes, to be sure, but changes none the less.

7. A healthy balanced diet can be beneficial to sufferers of both depression and M.E. in managing their illnesses.

8. Both M.E. and depression can occur at different severities and fluctuate over the course of the disease – and the experiences of each, like with all illnesses, are unique to the person suffering them.

If you’re suffering from either disease – or both – life is hard. It’s my hope this ME awareness day to clear up some of the common misunderstandings between the two, which often lead to more suffering by those already dealing with a hard illness. It’s also my hope to encourage people to love those around them struggling with these diseases, to reach out to them, and not to leave them alone in a very dark place.

* Obviously both diseases are far more complicated than this simplistic overview of some of the major differences between them, and if you want to find out more then I’d recommend researching them thoroughly. Perhaps start with the charities ‘Invest in ME’ and ‘Mind’.

** It’s worth noting for the astute that while some neuropathic painkillers are used as anti-depressants at a higher dosage, but when prescribed for neurological pain (such as found in M.E.) the dosage used is too low to use as an anti-depressant.

Think before you vote, Scotland!

This post is not about voting for No or Yes, but encouraging you to think carefully about the consequences of each option before you decide regardless of what way you lean. It’s not only in response to the many vague and heartfelt reasons such as “we have so much shared history”, “it’s upsetting to break up a union”, and of course the famed “we’re just better together”; but equally directed at the “freedom for freedom’s sake” rhetoric which I honestly have never heard but suppose from all the vitriolic comments directed against it must be out there somewhere.

I understand that there is a lot of emotion, history and joy embedded in both sides of the debate, but there seems to be an assumption that this vote is about “change” or “no change”.

As both sides will readily attest, that’s simply false.

It’s untrue that there will be no change. It is a choice between two options which are both very different to what we have now, not just a matter of opting for the flag or politician we prefer. This is why I consistently encourage people to investigate what both sides say, both from their own sources and from the many neutral sources available for each topic. For example, you want to know about pension security? Great! The DWP have explained exactly what would happen. Go look it up1.

I think it’s important to know what you’re voting for as much as possible precisely because it means big changes. If it didn’t mean anything at all I would agree it doesn’t matter, but it really will make a difference whichever option is chosen.

If you vote ‘No’ you vote for all the change ‘No’ brings, based on the change that the UK government has been bringing into place and all major parties have sworn to continue. If you vote ‘Yes’ you vote for all the change ‘Yes’ brings, based on whatever government is voted into power in an independent Scotland. Neither option retains the status quo.

Some examples:
After a Yes vote, Scotland’s vote actually counts for choosing a government.
At the moment the UK government only has options which lean to the right with any power, but Scotland’s political landscape has a lot more variety2, especially with socially minded or left-wing parties. Plus, Westminster uses First Past the Post which as one can see results in swapping between Blue or Red; Scotland uses Mixed Member Proportional Representation3 which means our parliament reflects the diversity of views. That makes a big difference in how the country will be run.

Like what the UK government is doing? Vote No.
Dislike it? Vote Yes.

After a No vote, the amount of funding allocated to Scotland for services will change greatly.
That’s not unionist backlash or separatist myths; the way funding is allocated guarantees it. Currently for services such as the NHS (which is entirely separate from the three English, Welsh and Northern Irish health provision services, which are also separate from one another4) Scotland is allocated a percentage based on what England is allocatedr5. But, England has been privatising their NHS6 with one of the outcomes being to not have to pay as much. If England doesn’t allocate as much funding to the NHS, Scotland doesn’t get as much funding. If they allocate none, Scotland loses about 1/3 of all income. That means under a No vote we will end up with a private health service instead of public health care (unless the Green party or NHS party win a majority in the UK). 

Like public healthcare and universal rights to treatment? Vote Yes.
Like the move towards fully privatised healthcare and treatment based on income? Vote No.

After a Yes vote, that new government is going to have some new parties.
Actually, all the major parties involved in the Yes campaign are putting forward their vision for what an independent Scotland could have, and since they are in agreement on the basics (more spending on public services, less spending on nuclear weapons) if they get in then there will be a massive swing towards social ideals. For example, the SNP wants to increase childcare funding and minimum wage7, the Scottish Greens want to introduce a universal basic income8 instead of our current benefits system etc.

Like guaranteed health and social care for all? Vote Yes.
Like the current and increasing reduction in public services? Vote No.

After a No vote, the three major UK parties have said that, to varying extents dependent on which party gets in, powers for the collection of income tax will be devolved to Scotland9.
That means that, if you believe anything those parties say any more at least, the Scottish government will have to set up a Scottish version of HMRC and fund it from the Scottish budget. On the one hand, new jobs; on the other, far less money for the government to spend due to funding the Scottish HMRC. As Johann Lamont (Scottish Labour, strong No vote) said: ‘Scotland will not be getting more money, it will simply be accountable for raising more of its money. I hope that dispels some myths.’ That will be a big change.

Dislike public spending but like devolved tax collection? Vote No.
Like public spending and want all powers transferred to Scottish government? Vote Yes.

Those are just a few examples; I’m trying to show that either way, No or Yes, there will be a change from what we currently have, so it’s important to explore what those changes actually mean to inform your vote.

Sadly it’s not a case of whether you like England, it’s a case of considering the various implications of what the vote brings. And as a Christian, I would consider what government policies are in line with God’s character, and what aren’t, and inform my vote in that manner. We know from the sources on both sides that independence is entirely financially feasible, nobody is denying that, it’s whether it’s a good thing or not that’s the case. This is not choosing between two flavours of the same dessert, with the only difference being that a Yes vote means we become dual citizens. If it were I really wouldn’t care enough to write this much

I am not urging you in this post to vote a particular way, I am urging you to consider your vote as the important thing that it really is by voting for the consequences you want in the future. If you look around at the state of our country and you really like the status quo, that’s all well and good (though it highly surprises me), but it won’t stay this way whatever the outcome; which change we want is what we need to consider.




2. See the UK political compass based on 2010 party manifestos at:

3. For a detailed explanation, see Dr. Euan Bennet’s explanation here:







Confessions of an English Scot

I have a confession to make to my fellow pro-independence campaigners, for which I am very sorry, and that is this: I often say ‘British’ when I mean ‘English’, and ‘English’ when I mean ‘British’.

I don’t doubt that actually many of you have picked that up – my husband occasionally corrects me on the point – but it’s a habit I’m striving to relearn. But it raises the question ‘why?’

Why do I confuse the two terms?

I know what it comes across as (which is why I’ve been trying to stop it) – it comes across as that proud English chit assuming that ‘England’ is an interchangeable term for any land in the British Empire, and that as a true citizen of that noble country I have the right to build myself a castle anywhere I set my flag!

flag castle

Air conditioning, sea view, private moat… *

I can promise you that, in my case at least, that isn’t the reason**.

I think it comes down to something much more basic and forgivable. I think it comes down to identity.

You see, I’m English for sure, but I’m also British. I was brought up English and British, and I have lived my life English and British. I’m from England, I’m from the UK. My passport is British but it says I’m born in England. Just like so many of the ‘No’ campaign say they don’t want to separate because their identity is British, my identity is British.

I understand that British and English are different things – of course they are. To be English makes you British, but my husband is British too (don’t tell him I said that) and is firmly north of the border, heart and soul. They are clearly not the same, but my identity isn’t different things – it’s not split. I’m me, and that me is both ‘English’ and ‘British’.

Part of the privilege of being English (and I don’t deny that we are privileged, nor that that privilege is unjustly given) is that we don’t have to differentiate those identities, and separate out what they represent. In fact, most of what we are given affirms that the identities are inextricably linked and intertwined. Our media paints a picture of Englishness and Britishness being so close as to be the same, and there’s little to contradict it in South English culture. For me, it was only when faced with people equally British but undeniably un-English that I started to question where the line actually is. I never had to before.

All that to say, when I encounter something ‘British’, I may retrieve ‘English’ (or vice versa) as the correct term. I’m not done renewing my mind yet.

This isn’t an excuse. I believe it’s the duty of the privileged to compromise in order to build up the disadvantaged, and that’s why I’m overhauling my lexicon. But I hope it goes some way to explaining why we English often mix up the terms, and might even make you reconsider the words you use and why.


*Photo credit: Sarah Groves. Image cropped. Source:

**Well, not usually

A Moment for Meso

I first heard about Mesothelioma when I was a child- my parents were talking about someone who had died of a cancer caused by asbestos, and how unfair it was. They explained to us that a long time ago it had been used as a building material, but that they had discovered that even a little exposure to the dust could be deadly so they had stopped using it. That was all I ever knew about it, so I was shocked when I learned recently that although they have known it was dangerous since the 1950s, it wasn’t actually banned until 1999 and it’s still the leading cause of work-related deaths in the UK

Mesothelioma is a cancer of the cells which cover organs, usually those of the lungs. It develops slowly and is often not discovered until the sufferer is already struggling to breathe. Although it can be up to 40 years from exposure time to the patient developing the disease, once diagnosed the average life expectancy is a mere 1 year. It’s incredibly painful and debilitating, but the early signs tend to be subtle and so often missed – weight loss, side pain, shortness of breath, fatigue and a persistent cough.

One of the great battles faced by Mesothelioma sufferers, much like those of ME, is the lack of information available for patients and doctors. Although most people are aware that asbestos is dangerous, very few realise that it was still used as a building material in the UK as late as the 90s. Then there’s the large number of professions exposed to it – from those serving in the armed forces to those washing construction crews’ clothing – most of whom never knew there was any danger at all.

The good news is that there are treatments available, and new research is being carried out all the time – the prognosis nowdays is better than it was even 10 years ago! However, many doctors are still unaware of the latest options, and patients often struggle with understanding the illness and what to do about it. That’s why, as ever, the spread of information is key – and that’s something we can all help with.

We can combat poor poor life expectancy simply by knowing what to look for. Usually the illness is diagnosed very late, but the earlier its caught, the better the chances of survival. You can find out more about the symptoms at It’s also a good idea to check whether you or a loved one worked in one of the industries which used asbestos – a list can be found here:/

If you’ve been diagnosed then there’s a wealth of medical and legal help available at websites like (US) and (UK) where you can find out about the latest treatment and research options. There are also support groups and helplines available. In the UK you can sign up for clinical trials through the NHS at and help researchers improve treatments and quality of life for sufferers everywhere.

Lastly, if you’re thinking of carrying out some DIY or home renovations then find out first whether your home was constructed with asbestos, so you don’t accidentally put yourself and your family at risk.

Like ME, this was a disease I had vaguely heard of but never really knew about, but it’s something many people know all too intimately, and those sufferers need support too. I’m glad I took the time to learn a little more and to share that knowledge. Information empowers us – the more we know, the better we fight!

We deserve better

This year’s ME awareness week, I’ve been discussing some encouraging reasons that it’s so important that we raise awareness. Today is my last thought for the week.

Reason 3: Because those suffering deserve better

I’ve looked in reason 1 and 2 at how people act on what they believe – and so the consequences of believing a lie mean acting as though that lie is true. The lies of ME include things like saying sufferers have ‘false illness beliefs’ or that they are fakers or lazy – and the consequences of those lies are evident to every sufferer.

They are things like mistreatment by medical professionals, ranging from not being taken seriously through to being locked in institutions and forced to undertake activities which are severely harmful. Outside of medicine, it can mean being shamed for having a disease, ostracised by a community and treated awfully. Families push people out for refusing to get better; spouses leave because they can’t cope and don’t have the support they need to care for someone who is suddenly severely ill; needed research grants are ignored; jobs unfairly fire people; gossip centres around someone who rarely leaves the house; benefits are cut off unjustly from those who are too ill for basic care – and it goes on.

People with ME do not deserve this treatment. Every sufferer deserves better. Every sufferer deserves rigorous scientific research to find a true treatment, a reliable cure. Every sufferer deserves doctors who have heard of their condition, specialists who truly understand it and real help to manage the disease’s course. Every sufferer deserves those around them to understand them and to come alongside them in their difficulties, not turn away.

I believe the route to this is awareness.

When doctors are truly aware of this illness, they will treat their patients in accordance with that awareness. When friends and family, carers and support providers are truly aware of this illness, they will move to support each other appropriately. When sufferers are truly aware of this illness, they will know how to take care of themselves and how to take charge of their own care where possible.

The lives of those affected by to this horrible disease are vastly improved by awareness, and that is what the sufferers, carers, friends and family deserve. They deserve a future where people truly understand this illness, where it is researched and treated seriously, where patients regain their dignity – they deserve a future with a cure.

My encouragement to every sufferer, carer, friend and family member this week is this: keep fighting, because every little increase in awareness that we make together moves us towards that future. I know so well that sometimes it feels like we are doing nothing. But each little action, each single person you inform and enlighten, moves us one step closer to the future of true understanding. Whether you have a popular public platform reaching thousands, an online-only presence telling your story, or a single conversation at the shops, you are helping spread that truth, and that truth slowly but surely makes a difference.


Awareness brings change

This week I’m exploring the needs for awareness, as an encouragement to all those I know who are fighting hard to keep raising awareness. I wrote about how different it looks from the outside, and that lead to the first reason it’s so important to raise awareness – because if we don’t tell people, they don’t know. Today is my second reason:

Reason 2: Because awareness brings change

As I discussed yesterday, when people don’t understand an illness, they make wrong assumptions – and the knowledge and assumptions we have are the basis for our actions.

Currently the assumptions that people have about ME, mostly formed from the negative portrayals in the media and their own preference for assuming the best, lead to a negative treatment and response of those suffering. They hear or assume fakery, false illness beliefs and over-emphasising, so they act as though sufferers aren’t really ill, aren’t as bad as they say they are, or that they would improve if they just thought positively.

It’s even worse when these lies and false assumptions affect the medical profession. Since they aren’t taught about the disease, they have no idea how to treat it – worse, with no accurate foundation, they are susceptible to listening to the serious miscarriages of science in the psychosomatic school of ME ‘research’. Someone with even a basic knowledge could not take such things seriously, but because they haven’t even that much, patients are treated like malingerers. Worse, many are imprisoned in psychiatric institutions, forced to exercise against their will and better judgement, ultimately making them irreperably worse.

But think of the opposite – what happens when doctors are adequately informed of how to treat the disease? Patients improve, they can manage their lifestyles. Or think about other illnesses which have previously been little-known: when enough people know about the difficulties, the much-needed research finally gets funded and there are breakthroughs in treatment. Even in the day-to-day, the way a patient is treated by someone with understanding restores dignity to a horrific situation, instead of degrading them further and adding insult to the grave injury of underserved and unremmiting disease.

Informing people is part of how we make that change. When the balance tips and people’s preconceptions are based on truth, that knowledge will bring change.