When I was a patient advocate there was this study called "The Pace Trial." It seems like a million years ago when we were all talking about it, though it's just a decade. It all seemed very important at the time. Anyway; during the process, as an exercise, I reduced my thinking about this study to just six words.
Later, as my advocacy work ended and I started to work in earnest on a new way of treating my M.E, in another idle moment I again tried to reduce my thoughts, (in this case about recovery), down to as few words as possible. I came up with the following phrase:
"Exploit variations".
Now, when you know what the treatment idea is, it's not a bad reduction, but when you don't... Well the phrase just seems meaningless! And, as a teaching tool, it's very, very, bad at explaining how I beat M.E to other patients!! So, I thought I'd, allow myself some extra leeway and try to share the way I beat M.E in one tweet...
As you might expect, there's an awful lot going on in those 280 characters. I'm clearly going to have to present the treatment idea as a movie or animation at some point, but for now here's some additional notes to help people with M.E (and their physicians) understand the thinking behind what was, on the face of it, quite a bold message:
>Ok.
This is me saying that I've listened long enough and that it's time for me to talk now.
>If you want to get better from M.E
At the outset we have a strong suggestion that recovery may be both possible and under patient control. This is highly controversial. The tweet, however, is about my recovery. It's me explaining to myself how to climb my way out of the slippery well of Myalgic Encephalomyelitis. It's what I'd share with my 12 year old self. And, to be clear, the very first thing I would tell myself at that age is that the symptoms of M.E are reversible.
>first rest
We start out with validation of the primary patient response to M.E and the "Return to baseline" starting point of CBT/GET. M.E symptoms are terrible and steps must immediately be taken to reduce them (in so far as this is possible).
We immediately run into a major problem: Inactivity is deeply damaging to health over the long-term. The human body needs exercise in order to maintain physical and mental health. Rest, therefore, can only be prescribed as one element of an overall recovery process. This is what the tweet as a whole defines: a possible route out of M.E.
>accept
Here, in one word, we have strong validation of M.E patients' illness-beliefs. We understand that later on these beliefs may have to change, but at this point, we take as a given that patients are a) telling the truth about their illness and are b) experiencing awful and thoroughly debilitating symptoms: symptoms that they are going to have to learn to live with - for a time. At this stage, the opposite response, fighting M.E, appears to be ill-advised.
>its seriousness
It is vital for patients, carers, physicians and the wider society to recognise that we are dealing with a serious, quality of life-destroying, chronic illness. We do this both to validate patient reports and to provide a strong warning of the perils of attempting to brush off M.E as nothing. Out of the thousands of emails I received from M.E patients, failure to recognise the seriousness of their situation at the outset was a common theme and lament.
>then de-stress
Here we have recognition that patients will have to make substantial changes to both their inner life and outer lifestyle to compensate for their current situation. M.E has been linked with burnout for very good reason. In fact, M.E patients may be burning out repeatedly on a cycle, a loop. Stress, either as tension within the body, or as unreasonable external demands, will effectively prevent recovery and even deepen the overall malaise and illness duration. Social support and welfare must be given freely and in a manner that does not increase an M.E patient's levels of anxiety and stress. Inconsiderate or non-delivery of necessary welfare support can perpetuate the illness.
>& pace,
This casual mention is absolute, clear, validation of M.E patients' primary coping strategy: Pacing. Its methodology is not described as it is widely available. While we respect Pacing, by placing it within a treatment sequence, we also suggest that there are limits to the improvements that this strategy can engender. Pacing is only a step on the way out of M.E. This is in line with patient reports that pacing works up to a point and no further.
>then nudge or medicate
Here we recognise the parity between behavioural and biomedical interpretations and interventions in M.E. We disregard the widespread ideological warfare over the topic as distracting and unhelpful.
>your circadian rhythm
Here we present a key change. For me, this was a change to the orchestration of my day and the energy budget that supports it. I call it Activity shaping. I've discussed this process at length on Twitter. The idea itself is somewhere between Sleep Hygiene (from medicine) and energy budgeting (from patients). Crucially, nap-removal, crash removal, and the consolidation of periods of exertion and periods of rest is achieved through timeshifting as opposed to "pushing through".
The diagram below demonstrates a gradual increase activity levels over a 24 period when a patient PUSHES forward (with corresponding increase in rest and sleep). *Not recommended at this stage*
In contrast the following diagram shows how a patient may gradually shift the timing of daily exertions and rest.
Timeshifting gives physicians an objective way to determine and measure treatment progress while satisfying M.E patients' demands for a potentially restorative treatment that does not require an increase to their overall level of exertion
>back to normality
It is vital, I think, to present a reasonable ultimate aim in treatment as opposed to an unrealistic extreme where either activity or rest "wins" as the correct way to deal with M.E. Normality here is the smooth alternation between rest and exertion enjoyed by the general (healthy) population and this must, I think, be the aim for every M.E patient. An M.E patient's highly variable energy budget with low level function punctuated by severe, often painful, crashes is torturous.
In addition to a highly aversive symptom-set, Post Exertional Malaise increases the likelihood of further episodes of Post Exertional Malaise. In M.E fatigability is more of a problem than fatigue and this is the reason why patients can perceive their condition to be a permanent, progressive and degenerative downward spiral. The light at the end of the tunnel finally appears when patients realise that M.E symptoms can be reversed. Brain fog is not necessarily brain damage, muscles can be rebuilt and working and social lives regained.
M.E patients report a low function, highly variable, energy budget with symptom worsening after "pushing though". All patients agree that managing and living with their condition is extremely hard and that they regularly fail in their attempts to avoid "crash". This may, as many patients believe, be the result of a virus, or it could be another ongoing problem such as sleep apnoea or environmental neurotoxic exposure, but it doesn't have to be.
The traditional patient description of M.E is that of feeling like a phone battery that won't hold its charge. In electronics this is called a memory effect. It is a property of certain types of battery whereby overall function becomes dependent on how and when the battery has previously been charged and discharged.
In a similar way, once fractured, a patient's energy budget itself could become both the cause and the effect of long term, chronic, malaise, i.e. a self-sustaining loop could be formed:
Any failure to manage M.E leads to further fractures to the activity cycle/energy budget, which then create further difficulties in management ...and so on.
In M.E, a memory effect within the body may mean that how well you spend today's energy budget may affect how well you are able to live tomorrow.
The difference between a healthy person's output and an M.E patients' activity is startlingly clear, and should provide all the evidence a physician or welfare officer needs in order to provide robust sympathy, care and support.
The key part of the process of recovery, for me, was the restoration of a normal activity curve. In the absence of external demands this a can be an inverted pattern, just so long as all the inactivity is in one part of the 24 hours and all of the exertion is at the opposing point in the cycle. Sleep inversion can be corrected at the end of the restoration process, again, by simple timeshifting (and this achieved via behaviour change, or medication).
If a patient's activity curve cannot be corrected or returns to a broken state, I would then consider a looking for an ongoing problem (such as sleep apnoea).
>then
This simple, singular, word recognises that something important has changed in the previous step (which was in my case, Activity Shaping). Up is now down, and down is now up. We have to re-orient ourselves and, to finally escape M.E, we have to realise the rules have now changed!
Time to rock the ship!
>challenge limiting illness beliefs,
Here we have full validation for medicine's application of CBT challenge to illness beliefs, while placing it at the correct point in our prescribed route out of M.E. At this stage we recognise, and without judgement accept, that M.E has turned us into "couch potatoes" conditioned (by perhaps years of illness) to believe that exercise will always produce harm. If, however, the correction to our activity cycle has been effective, harm should not now occur. In fact, the normal beneficial response to exercise should have returned, (even if this return has gone unnoticed). At such a time, illness-beliefs, once so protective, now become the only things that are limiting a patient's function. Challenge and self-challenge are required.
>gradually increase exercise levels
Here we have open validation of the medical treatment strategy, "GET, Graded Exercise Therapy" as something that every single M.E patient will have to do in order to escape the effects of M.E. "The Pace Trial" mentioned above has an extremely good description of GET and CBT(GET) within its Notes for Therapists. GET is greatly preferable to unstructured increases in exercise, especially when setting off on the road to recovery.
I think the reason that some M.E patients report difficulty with GET is that it is applied before the patient's activity cycle/energy budget has been normalised. This can end up exacerbating the pre-existing sharp changes in the cycle. This worsens symptoms and makes the energy budget more difficult to manage, increasing the likelihood of further fracture.
When GET is applied to a healthy daily activity cycle/energy budget, the expected gains in fitness arrive without PEM and the patient is free to escape M.E.
Traditionally the primary symptom of M.E reported by patients is called PEM, Post Exertional Malaise. There has, however, been considerable resistance to this idea from medicine due to the well-accepted health benefits of activity. Doctors are more likely to believe that malaise follows inactivity.
Conflict over the key symptom in M.E has created a strong pressure on the doctor-patient relationship in M.E over many decades. One way to resolve it is to accept that both perspectives have merit. This takes the conflict away from the doctor's office or Twitter.com and places it firmly where it belongs: within the definition of the disease itself.
The idea here is that worsening follows both activity and inactivity and this defines the impossible paradox, the trap, the bind, at the heart of M.E:
In terms of exercise, patients are damned if they do and damned if they don't.
Likewise; physicians cannot possibly recommend decades of rest, it would be malpractice to do so, but, of course, they cannot convince patients to ignore what they feel is their primary problem, namely that exercise hurts them and makes them ill.
In the formulation described on this blog, M.E symptoms represent any deviation from a normal activity curve. Both under- and over- exertion are treated as equally undesirable. In addition, due to the postulated memory effect, both may have an detrimental effect on the body's future energy supply.
Patients' and doctors' views of M.E are both equally validated and they are directed to attack their common enemy, M.E, together.
>& when fully recovered
The suggestion here is that recovery may be 100%. This was the case for me. Recovery, after 35 years of illness, is as wonderful as you would expect. The only trouble here is that many M.E patients, especially the chronically ill often do not expect to recover. This view, often emphasised by activists, has the effect of disempowering M.E patients further. What is the point in trying anything new if recovery from M.E is impossible?
At this point in time M.E patient activism's extreme bias tends to lead activists to unwittingly become allied to the illness itself. In contrast to this, I found that behaviour and attitude matter. I think you are unlikely to find recovery if you are not looking for it. I think that warfare between doctors and patients keeps both from curing M.E.
For my part, my own recovery has enabled me to go out and to fall off things like never before.
>go to the gym
It is ironic. We end up exactly where so many of us began. And at this point seemingly wild and hostile medical advice to exercise in response to an absence of illness becomes entirely correct. Isn't that a thing? Every doctor, every patient, every psychiatrist, every advocate had a piece of the puzzle of M.E. At least that's what I found.
As a whole, my tweet defines a procedure, a method, a route, a ladder, an ordered list. The presumption therefore is that if patients were to disregard or to attempt to follow these steps in a different order, things would not go as well for them, as they did for me.
Anyhow, that's the route I took. Your mileage may vary.
This blog is not medical advice. I am not a doctor.
I am also no longer a patient.
