This post is a continuation of my latest post about Post-Exertion Malaise (PEM) in ME/CFS. It is adressed to people with ME/CFS, but I hope that those of you who meets people with the diagnosis in your work also will benefit from this post. Above all, I hope that it can contribute to a better understanding of the long-term consequences of overload in people with ME/CFS and what can be done to reduce them.
ME/CFS is a disease that affects people in many different ways because it affect multiple systems in the body. Symptoms and degree of symptoms differ, and consequences in everyday life as well. Both due to variations and severity in symptoms - but also depending on who's been ill, demands and expectations of that specific person and what life was like before the disease. However, common to all people with ME/CFS, is Post-Exertional Malaise (PEM) which is one of the main criteria to set the diagnosis.
PEM is the consequence of reaching the limit of your capacity. When your amount of energy is out. A consequence of a sensitivity to all kind of load and a slow process of recovery. Regardless of the differences in symptoms and severity of them, all individuals with ME/CFS are struggeling to find and maintain balance in everyday life. And all have a risk for overload and permanent deterioration.
"People with ME/CFS describes an extremephysical and mental exhaustion often accompanied by malaise. Characteristic forthe disease is a recent and unexplained tiredness/fatigue that is not possibleto rest away. The symptoms worsened by exertion - and the deteriorationpersists over 24 hours. Other symptoms are sleep disorder, flu feeling,fever/feeling feverish, muscle pain, numbness, recurrent infections, autonomicsymptoms such as palpitations and orthostatism and problems with concentrationand memory. "..." If the patient after a thorough investigation arediagnosed with ME, it is important to avoid overexertion."
To experience PEM is a terrible thing no matter whatever triggered it. But when you become overloaded by a situation where you know the load could have been reduced by adaptation - where you are forced into more than you actually can handle due to someone elses ignorance and perhaps thoughtlessness - it feels even worse. It doesn't matter how good you are at keeping your balance if anyone else keep pushing you over the edge.
In order to avoid overload and PEM you have to stick to activities in the green circle, avoid activities in the red circle and constantly strive to balance the activities of the yellow circle, so that they end up in the green, and not in the red. This balancing act is called pacing.
Many - perhaps even the majority of people with ME/CFS have no activities that are safe in themselfes. However, they have a lot of activities that are at risk, but perhaps even more activities that always results in overload and PEM.
When we talk about PEM, it is important for you to understand that an activity in itself never is the only cause for overload and PEM - but there are many things that affect how the outcome will be. A person's starting point, where the activity should be performed, how long and how often it should be done and with whom, and what the expectations are on the person's performance - all are things that affects the outcome of the activity to be green, yellow or red.
A pacing that will work needs to include people of your surroundings. Not only yourself. They have to understand, accept and be willing to make adjustments to reduce the risk of pushing you into overload and PEM.
Meeting with healthcare and public authorities - our social support systems - leads to an inevitable overload and subsequent PEM for many people with ME/CFS. The activities are so far outside the range of activity that they automatically are red, no matter how much adjustment is made. But just because they inevitably lead to overload does not mean that we can ignore to adapt them. A well-managed adjustment can make a big difference in how severe the consequences will be, although they do not completely remove the risk of overloading and PEM.
But what specificly needs to be adapted? And what triggers overload and PEM in the relation with the support systems? I put the question to people with ME/CFS in social media and has compiled it with my own experiences in an image:
Visual description: An image intended to show examples of physical, cognitive and emotional load that can trigger overload with subsequent PEM. You can find a list of all the examples at the end of this post.
I will let some voices from people with ME/CFS give life to the different categories in the figure:
"To coordinate between health professionals, for example try to explain to the family doctor what the neurologist told me; instead of a neurologist and family doctor talking to each other!!! Need to call a specialist again and again to get the recipe when the family doctor refuses to print it. Instead of the family doctor hears off to a specialist and ask how they are thinking about the medicine." (Coordination and administration)
"Bad experiences makes it worse, especially at the moment they happens but also the fear that it will happen again. To be laughed at, snorted at, yelled at and kicked out - by the doctor you asked for help." (Treatment)
"Having to explain again. And again. Need to update doctors of the latest research." (Knowledge)
"Going through medical history verbally, being interrupted, do not know how much time you have left." (Planning and structure)
"To sit upright for more than 5-10 minutes is enough to trigger PEM, so everyting including me leaving my home is a trigger." (Preparations at home)
"I remember early in my illness, I needed to go for an assessment by an Occupational Therapist for work. The waiting room was lit with strip lighting, attached to a busy office, and had a loud TV continually blaring. Secretaries used the waiting area to access other rooms with doors that banged. Metal filing cabinet drawers were also being dragged opened, and then loudly slammed shut. I could feel my head starting to reel during the wait. By the time I got into the appointment, I could hardly speak.This was such a contrast to the first Occupational Therapy appointment I had with a different doctor. Here, the waiting area was a small separate room, with easy chairs, subdued decor and no music. We were told we'd need to wait about 15 minutes and then left in peace. All I had to do was remind my husband not to talk!" (Environment)
"Switching public transport is very PEM inducing for me. It takes organisation - where to get off, how to get to the next transport means, being in time. Also it takes a lot of time, and waiting in a comfortable place is tiresome, let alone out in the streets with all the noise, movement, and weather conditions." (Transport)
As you can see, the relationship with the support systems are very complex and there is much that can be done to reduce the risk and consequences of overload. It is not just about things in the direct situation but also includes many other elements.
To reduce the risk or consequences of overload and PEM is all about intentionally ease the heavy load in all areas - physical, cognitive and emotional. And to understand that the range of activity is very limited and that there basically are no activities that are green and safe in themselves.
A person's starting point determines the amount of load that is possible to handle at the moment. If I start my activity in an already overloaded condition, it is hardly possible for the activity to be green, regardless if it is properly adapted.
"To avoid PEM in my contacts with healthcare I would need to have email/chat conversations and home visits. It is possible that horizontal transportation to health care facilities, followed by a possibility of laying down in a quiet dark room (ie avoid the waiting room) during the visit would be better. If the person I meet have a well-structured conversation technique and use key words on a whiteboard, it may be easier for me to keep focused. To avoid PEM I need either my partner taking notes during the visit or get a written summery from healthcare staff that clearly sum up what has been decided and who is responsible for doing what. "
Some adjustments can be made in advance for a hypothetical person - for example in the categories environment, knowledge and coordination - and it would benefit many different groups of patients. But a conversation about overload and PEM and how it could be avoided or reduced, with the actual person that you meet is necessary. A good startingpoint for that kind of conversation is to understand that adjustments is about reducing the long-term consequences and not just about removing temporary discomfort.
There are many things in relation to the support systems that causes physical, cognitive and/or emotional load, therefore it is not enough to only adapt single things. The whole chain needs to be adapted to get a full effect. Even though you get a good treatment of the doctor the transport or spending time in the waiting area can trigger PEM. And even if you do everything to reduce the load during transport and avoid spending time in the waiting area - a too long conversation can be the trigger for PEM.
It requires an awareness and willingness of all involved to reduce the risk of overload and subsequent PEM - of people with ME/CFS, their families and the support systems. I wish that we could help each other by working together to reduce the risk of overload and a permanent deterioration in the health of people with ME/CFS!
The images in this post is meant to be used as call basis, partly to identify factors that triggers PEM and partly to understand what in the support systems that needs adaptation. Figure 1 aims to show the constant and seemingly impossible balancing act that make everyday life for people with ME/CFS. Figure 2 contains a variety of examples of different types of load that may trigger PEM. It is by no means complete, but I hope it can be a good start to understand the complexity and what contributes to the high load as people with ME/CFS are exposed to in contact with the support systems.
Figure 2 - visual description:
Physical, cognitive, and emotional load (which must be related to the person's starting point):
Coordination and administration
Handover to new staff laid on the sick
Routines that put responsibility on the sufferer to push on, keep track and remind
Acting messenger between healthcare contacts and actors who not coordinate or cooperate
Unnecessarily repeat the same investigation, sampling, treatment
Forward information between instances and individuals
Lack of continuity
Being dependent on help from relatives
Medical records that do not sync
Meetings outside home
Only verbal communication
Preparations at home
Be on time
Coordination and administration
Basic ADL (hygiene, get dressed etc.)
Stress and anxiety due to previous treatment
Preparing mentally, emotionally and practically
Switching public transport
Be on time
Drive a car
Being driven in a car
Large hospitals and long corridors
Not being able to use the transportation service due to hassle
To get from parking lot or bus stop
Messy environment with many impressions
Fluorescent lamps and downlighting
TV or radio in the waiting area
Many who talk simultaneously
Noise (eg fan, water/coffee vending machine, elevator)
Seated while waiting/converse
Poor space for wheelchair
Exposure of infection
A room where many passes
Planning and structure
Not knowing how long the visit will be
Lack of information on what to expect
Unclear expectations what to perform
Unclear framework and purpose of the meeting/treatment
Healthcare planned for a healthy norm rather than chronic illness
More knowledge than the doctor but not respected for that
Constantly be the one nobody can relate to
Being forced to read up on and argue
Not trust on staff due to previous wrongdoings
Having to slow down or push on
Facing those who not "belive in" the diagnosis
To be devided in symptoms rather beeing a whole person
To be misunderstood
Be denied treatment
Being forced or pushed to treatment
Addressing the staff's frustration
Be ridiculed, scorned and mistrusted
No consideration given to the starting point
When preconceptions get control
Not to be taken seriously