Solve M.E. Patient and Caregiver Resource Guide: Post Exertional Malaise (PEM) and Rest

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.

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.

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.

There seems to be some mixing up of PEM with ME/CFS itself.

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US than here where cheques are a distant memory, I think to talk about balancing a cheque book makes the document seem outdated and hard for most people to relate to.

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.

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.

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.

 

The Pacing and Rest section
In common with lots of resources about Pacing, this one misses the important point that a person with ME/CFS has to make hard decisions about how to live their life. Do they stop trying to go to school and study from home? Do they reduce from full time work, to part-time? Work from home? Give up work entirely? Do they need to move back home to be looked after by parents? Do they need to move into a much smaller, easier-care property? Do they have to give up on the idea of having children, at least for now?

Instead, again in common with a lot of resources written by people who don't have ME/CFS, there's a focus on planning and tracking, and chopping tasks up into bits. Which sounds exhausting and a bit soul destroying. Yes, of course there's a place for that, and yes, it should be mentioned. But the key to pacing is changing your life so that the demands normally placed upon you are such that you can handle them with a bit of a buffer for unexpected things.

The Pacing Tactics section
It's not really clear why this is a different section.

These are good points:

I wonder if some of the material could have been delivered in a less didactic tone? I think people want information but scope to make their own mind up on what tradeoffs make life worth living.

There's a great warning that pacing is not GET. But then we are given a relatively large amount of detail about the PACE Trial which seems unnecessary in a Pacing resource. Success has many mothers, or something, and no doubt the CFIDS people did contribute to the recognition of the flaws of the PACE Trial, but now they seem focussed on the selection criteria rather than the more fundamental issue of the unblinded study design with subjective outcomes.

Regardless, there's too much about the PACE trial and GET.

There's nothing at all about the use of wearable monitoring technology, or apps, which seems like a major omission these days. These can make the whole process of understanding how to operate with ME/CFS much less onerous.

Identifying triggers section
I know people disagree about this, but I'm not very keen on the idea of triggers - I think a bit more of an explanation of an energy budget or something like that would be useful. The energy envelope concept is mentioned in passing but is not explained. The idea of a fluctuating threshold I think is more accurate than the idea of a trigger. Speaking to your aunt on the phone for an hour, for example, isn't a trigger, it's just a cognitively demanding activity that may mean you can't do something else that day in order to avoid PEM.

I don't think there's any evidence that diet cures ME/CFS, which is what 'reinstating health' sounds a lot like.

There's a table for recording "Types of stress that intensify your symptoms". And a table for recording what foods that affect functioning. I don't think these are a useful use of space.

So, this document seems like something from a long time ago. There are better resources out there. I hope Solve ME has a look at them and has a rethink about their one.