The PEM section
I get the feeling that this was written by someone who doesn't have ME/CFS. It hits a lot of the marks that we would want to see, but it also misses some. Crucially, it seems to focus on fatigue, whereas PEM is much more than that.
See for example this first paragraph in the document. There is mention of a worsening of symptoms, but fatigue is the only symptom mentioned. The immediately following paragraphs don't explain the other symptoms.
As defined by the Centers for Disease Control, “post-exertional malaise (PEM) is the worsening of symptoms following even minor physical or mental exertion, with symptoms typically worsening 12 to 48 hours after activity and lasting for days or even weeks.” PEM is the topic of multiple studies — many of them currently ongoing. Unusual, undeniable, crushing life-altering fatigue. Fatigue that dictates the terms of a person’s lifestyle. Fatigue that demands to be recognized. Fatigue that must be planned for and planned around. It is real and measurable and being aggressively studied in clinical research.
There also seems to be unnecessary redundancy in that paragraph, with two separate phrases talking about PEM being researched.
There's a later paragraph that mentions 'flu-like fatigue' which is closer, but it's still the fatigue that comes with an infection, rather than feeling ill.
With ME/CFS, quick easy recovery cannot be taken for granted. Often crushing fatigue — even after minor everyday exertions — is a major concern for people living through ME/CFS. The kind of fatigue we’re considering is well beyond being reactively tired after vigorous exertion. The kind of fatigue being considered is a relentless flu-like fatigue that can persist for days, even weeks and perhaps months after exertion. These episodes are recently referred to as “crashes.”
I know they are making the good point here that ME/CFS isn't deconditioning. But, ME/CFS isn't necessarily persistent fatigue, as in 'fatigue all the time', and it can involve physical weakness.
Far too often, people who are dealing with ME/CFS are encouraged by well- meaning friends, family, and even doctors to engage in a program of physical exercise. It seems folks unknowingly mistake the uncommon persistent fatigue for physical weakness.
There seems to be some mixing up of PEM with ME/CFS itself.
However, PEM is:
● NOT a condition of being weak or a result of deconditioning
● NOT laziness
● NOT an aversion to exercise
Unless things are very different in the US than here where cheques are a distant memory, I think to talk about balancing a cheque book makes the document seem outdated and hard for most people to relate to.
The mental exertion of reading instructions, studying, reading a good book or balancing a checkbook (or the computerized equivalent), can ignite an unexpected PEM response.
I think this paragraph overstates the impact of worry and stress. I think the effect is to paint us as delicate flowers who can't even manage a contentious political conversation - many of us would enjoy that for a while on a good day. Again PEM seems to be defined as fatigue. Personally, I'm not convinced that a 'common emotionally tense situation' is very different, in terms of its capacity to cause PEM, to a similar situation with the same level of physical and mental exertion, and time spent upright.
Worry and stress, when allowed to gather too much momentum, trigger PEM as well. Sudden fatigue to the point of exhaustion is even more frequent when dealing with common emotionally tense situations; disagreements between family members, financial demands, and a contentious political conversation are all possible scenarios that are likely to produce a “crash.”
There are statements about capabilities that not everyone has. Not everyone can have a shower and re-dress and dry their hair before resting. Never mind 'preparing meals is an ordeal' - not everyone can prepare a meal. It isn't clear what this is doing in the PEM section.
Most people with ME/CFS have learned to plan step-by-step for taking a shower so they can complete a normally simple task with enough energy to re-dress and dry their hair before needing to lie down, or before collapsing on the floor. Some people with ME/CFS report only being able to shower every five days or longer. For people with ME/CFS, preparing meals is an ordeal. This task can also become a major undertaking that must be completed in stages with resting periods between chopping, stirring and cooking.
Thankfully, PEM can be reasonably controlled by “activity management,” also called pacing. Your main goal must be to avoid PEM flare-ups and illness relapses, by balancing your activity and rest.
I think this overstates the control that can be achieved, especially for some people such as the parents of young children, and understates the uncertainty. It's not explained why 'your main goal must be to avoid PEM flareups', or how a PEM flare-up differs from PEM. I would have thought the main goal of a person with ME/CFS, like anyone, is to live a worthwhile and good life. That might mean not avoiding PEM all the time. Especially in the absence of clear evidence, a person with ME/CFS should have the freedom to make that decision without being blamed.
Overall, the section has a lot of repetition, and, I agree, it's much longer than it needs to be to cover the ground it covers. It also starts to discuss rest and pacing, which is what the next section is about. It seems to lack a structure, a clear idea of the points it is trying to get across. I'm sorry to be so negative about this. I agree that there are existing resources that do the job better.
