The primary symptoms of Myalgic Encephalomyelitis are Pre- and Post Exertional Malaise: Physical or mental exertion makes people with M.E ill. Unfortunately, lack of physical or mental exertion also make us ill. It's a bind. This is how I escape it.
Over three decades I tried many different ways of dealing with my M.E. I tried to run it off: What a disaster! I tried to rest for a year. What a waste of time! I tried to ignore it, I tried to pace myself, to gradually increase exercise levels and I tried alternating between rest and exercise on a schedule. No joy. This is what I came up with in the end. This is what works for me.
The above is somewhere between a graph of activity/time and "Scramble" the 1980s arcade game (example here). The idea is to accept the paradox at the heart of my condition, namely that both under- and over-exertion lead to loss of quality of life and function and to try to plot a way through avoiding both.
Unlike the arcade game, I find that my success in the moment determines the direction the cavern then will take. Crashing into the roof (over-exerting) or the floor (under-exerting) will make the cavern point downwards from that point on (towards lower levels of health & activity). Conversely, avoiding both roof and floor will start to make the cavern point upward (towards greater levels of activity and health).
M.E patients are well-used to the idea that over-exertion today will bring them loss of function and quality of life tomorrow, Post Exertional Malaise, illness following exertion is the halmark of M.E. However, as a patient it took me many years to understand what had long been obvious to physicians, namely, that under-exertion was also costing me huge amounts of activity and health.
Rest, acceptance and pacing (moderating one's exertions) all play a vital role when pulling back on the throttle and decreasing activity. Likewise, exercise, graded exercise and cognitive challenge (questioning the ideas that hold one back) all play a vital role when pushing foward and increasing activity levels.
After 13 years of decline in function, even a tiny upward trend in my health was cause for huge celebration and relief.
Bias is a dangerous thing. It blinds us. Over the course of 30yrs I have regularly tried to pretend that the limits of my condition did not exist ...and often paid a heavy, long-term price. Crash is a very common experience for people with ME. Post exertional malaise is a defining symptom. When one ignores the upper limit on activity one is taking a huge risk.
Likewise, counter-bias is dangerous. It too blinds. Having M.E does not magically remove a patient's physical & mental requirement for activity. While inactivity can reduce symptoms its cost is high: life & function are lost. Rest is strong medicine but it must be used sparingly.
Whether due to internal or external factors, the limits of M.E can vary over years, weeks, and even hours. My response will be the same no matter the timescale. I will try to keep within the safe area and avoid the loss of function that comes from over-exertion and inactivity.
Likewise, the way I manage my M.E is the same at at any level of ability.
The white channel represents safe passage. A route where you can gain the benefit of exertion and rest without risking over-doing either. Sometimes, however, there's no way through. Health and function will be lost. Ok. So be it. We know how to deal with damage and loss of function. We know how to repair our recovery and rebuild our activity levels. M.E is no longer something to be scared of.
The red channel represents a healthy activity/inactivity cycle such as might result from following a work schedule. Unfortunately, this schedule may repeatedly force an M.E patient out of their safe passage. Over time I'd expect a decline in their health & function.
One of the ways I still managed to be productive at a much lower level of health/ability than I currently enjoy was to accept the reality that it was easier for me to work between 10pm and 3am. I have no idea why this was true, but it was.
People with M.E need to be aware that when they seek help, or attempt to discuss their illness, they are walking into an ideological war that has raged for a number of decades. Putting polarisation and extremism aside as unhelpful, the different ways of responding and attempting to manage M.E fit into a spectrum.
Extreme responses to M.E, such as "Go work out in the gym" or "Complete bed rest" are reserved for the appropriate extremes in function level. Viewed in terms of distance from extremes, Graded exercise is seen to be as moderate a response to M.E as pacing. The only real difference between Graded Exercise and Pacing being that the former tracks symptom-start seeking to maximise activity, and the latter tracks symptom end, seeking to maximise quality of life.
Were I to live my life with M.E again I would treat this diagram as a ladder, changing my response to illness according to my current level of activity. I would respond to severe M.E with bedrest, however I would look for variation in my symptoms and attempt to re-enforce these with minimal activity. Likewise were I able to pace I would, mindful of the potential loss of available life pacing may conceal, seek to "pace up". Bouncing the boudaries would ensure that my mental model of my "energy budget" was accurately reflecting the upper limits of my capacity.
M.E has a twist built right in. Activity hurts yet activity helps. All M.E patients and physicians must decide whether to embrace this dissonance or to spend endless decades fruitlessly fighting over it.
I think the ideological war within M.E is an absolute waste of time and energy. You wouldn't buy a car without a gas pedal. You wouldn't by a car with the gas pedal fixed to the floor. In the absence of a biomedical magic bullet, inteligently and responsively modulating activity level is a sensible way to try to manage M.E. It has certainly worked wonders for me.
I am going to be quite firm about this one. I found M.E patient activism to be brim full of extremism. M.E activism is unnecessarily adversarial, biased, and riddled with nasty, low quality, politics. There is no doubt in my mind that M.E chartities and activists' behaviour lowered my mental and physical health.
I have seen M.E patient activists ruthlessly target physicians and M.E patients with sustained abuse. I have seen researchers allied to M.E patient activism encouraging the M.E community to launch personal attacks on their research rivals. I have seen attempts to mislead international news and to suppress reports of harm. I have seen claims of medical bias from those who cannot report their own. I have seen M.E activists publicly brand Graded Exercise harmful while gradually increasing their own levels of exercise in private. I have seen leading M.E community activists threaten M.E patients. I have seen leading M.E community activists lie to and about M.E patients. I have seen multiple hardworking M.E patient advocates retire from service due to vicious attacks from M.E activists.
The problem appears to be that too many have highly charged views about an issue that we simply do not yet understand. It is still too early to say whether M.E has biological, psychological, or bio-psycho-social features amenable to treatment. We remain at a point where doctors and patients and researchers should be talking without prejudice and aggression. Instead, the politics of M.E have been variously described as "a cesspit", "a horrible cauldron", "suffocating", "toxic", and "a torture chamber". After many years trying to resolve the terrible issues I have concluded that it is best not to get involved in M.E activism. It is a huge waste of both time and energy. It is best to put your energy into living life.
This letter that I wrote and sent to a member of the British House of Lords provides a summary of the problem with abuse that I found throughout M.E patient activism. I have removed personal comments and identifiers because the issue here is one of behaviour.
Abuse and threats from M.E patient activists remain the single biggest roadblock to fair social and medical treatment for M.E patients. Though I am no longer an M.E patient advocate, every day on @ahelluvabird I try my best to get this simple message across:
People with M.E should not be abusive to doctors or to patients.
There is hope. M.E patients often report improvement, sometimes considerable improvement. I think their illness may well still exist, but over time they've become better at managing it, responding to it and living with it.
Think of this way: Every human being on the planet has a vital need for both activity and inactivity. They get around the paradox by alternating between periods of work and sleep. This is the ideal, this is norm that we as M.E patients have to regain. Neither "Go to bed" nor "Get fit!" can ever be the singular cure for M.E, the cure will always involve both.
I went from being locked in darkness and pain right to the top of the Brecon Beacons. And onward. I wish all people with M.E the very same success.
"Hello. I'm not a doctor. The content of this website is my personal opinion, and should never be treated as professional medical advice. If you want to chat, it's best to contact me via Twitter DM here: @ahelluvabird. Please don't talk to me about M.E though. Unless otherwise attributed, all images, text, videos and music on here are my own work."