NICE guidelines - Pacing

[NelliePledge]

The current NICE guideline does attempt to define the terms used. You can find the definitions in Appendix D attached to the main document:

That’s seriously fuzzy

 

[ME/CFS Skeptic]

I would be concerned that all patients, ranging in severity from very mild to very severe, could be told not to rest for more than 30 minutes at a time

I think you might be confusing preemptive rest with normal rest periods. Preemptive rest is resting when you could easily do more, believing that this will help the body to heal itself. This was an aspect of Adaptive Pacing Therapy as used in the PACE-trial. Jason and Goudsmit criticized this approach, as their version of pacing encourages striving for the maximum level of energy expenditure that doesn't cause post-exertional malaise or relapses.

I do share some of your concerns about the GET section in the paper by Goudsmit et al. But basically what they are saying is that if you no longer experience PEM and are improving to about 60-70% of normal functioning, a patient can try to increase their activity level. As I see it, this is an advice for patient who are recovering. This advice (aimed at the heterogeneous CFS-population) could be criticized. But I still think we should refer NICE to this paper to indicate that there is a consensus about pacing in the ME/CFS literature that is totally different from the version Antcliff et al. are using.

As I said, the only alternative I see is to say to NICE: “this is what pacing means to us.” Other groups will then do the same thing. Action for ME (a larger group than S4ME) might for example suggest APT and GET proponents might propose the version of pacing used in the chronic pain literature. So I’m afraid that this strategy will get us further from our objective and closer to pacing being used as a rationale for softer versions of GET.

But that just my opinion. Happy to hear how others see this.

Maybe we should have a debate about what pacing means to each of us and what techniques we find helpful?

 

[Evergreen]

I think you might be confusing preemptive rest with normal rest periods. Preemptive rest is resting when you could easily do more, believing that this will help the body to heal itself. This was an aspect of Adaptive Pacing Therapy as used in the PACE-trial. Jason and Goudsmit criticized this approach, as their version of pacing encourages striving for the maximum level of energy expenditure that doesn't cause post-exertional malaise or relapses.

I know what pre-emptive rest is. My point is that the advice to limit “these periods” to 30mins is (a) debatable and (b) easily overinterpreted, which could lead to a recommendation in the NICE guidelines that rest periods generally should be limited to 30 minutes. (The advice being originally in Goudsmit, Ho-Yen and Dancey’s 2009 paper, reiterated in Goudsmit, Nijs, Jason & Wallman 2011).

Why am I concerned about this? Because the current NICE guidelines state (p.238 of full guideline):

Rest periods are a component of all management strategies for CFS/ME. Healthcare professionals should advise people with CFS/ME on the role of rest, how to introduce rest periods into their daily routine, and the frequency and length appropriate for each person. This may include:
• Limiting the length of rest periods to 30 minutes at a time.

So in the current NICE guidelines, published in 2007, that managed to sneak in with no reference, no evidence. I think it could again, or that Goudsmit et al’s recommendation about limiting pre-emptive rest periods to 30mins could be (mis-)used as evidence for such a recommendation in the new NICE guidelines.

Similarly, the GET PACE therapist manual states (p.67):

Rest after exercise is particularly important at the start of GET, preferably for not longer than 30 minutes, to allow the neuro-musculo-skeletal and cardiovascular systems to adjust.

The GETSET participant manual states (p.14):

However, you should avoid resting for longer than 30 minutes, and rest in a sitting position.

Coming back to (a), I don’t agree that the finding that a subset of a subset of a sample, namely “some” of the patients “who felt relatively well during the periods of pre-emptive rest” reported “boredom, isolation and depression” warrants a recommendation for all patients not to pre-emptively rest beyond 30 mins at a time. So patients who feel unwell during the periods of pre-emptive rest are told to take less pre-emptive rest? Doesn’t sound like a patient-centred approach to me.

I think it’s wise to be cautious with what is pushed in NICE’s direction. If we want to distinguish pacing clearly from all exercise programmes, including those that are a little less harsh than that in PACE, then it's not wise to highlight Goudsmit, Nijs, Jason & Wallman’s paper. If we don’t want the new NICE guidelines to suggest limiting rest periods to 30mins, then don’t give them a paper that suggests (in my view, wrongly) limiting pre-emptive rest to 30 mins. It’s a bit like the phrase “Anything you say can and will be used against you”.

But I still think we should refer NICE to this paper to indicate that there is a consensus about pacing in the ME/CFS literature that is totally different from the version Antcliff et al. are using.

I agree that the distinction should be made. I just have misgivings about using that paper to do it - for reasons outlined in my previous post, and others. If we want NICE guidelines that do not endorse increasing exercise for PWME then let's not give them a paper that suggests a consensus that exercise is beneficial when it's accompanied by or preceded by pacing.

There may be other publications by Goudsmit or Jason or others that define pacing well without the other stuff. They've both written a lot on it.

 

[Ravn]

That's the name of an approach that involves graded exercise (according to how NICE describes it). It's GET in disguise.

Bummer. Sneaky!

 

[ME/CFS Skeptic]

So patients who feel unwell during the periods of pre-emptive rest are told to take less pre-emptive rest? Doesn’t sound like a patient-centred approach to me.

I have difficulty seeing the problem with this.

As I understand it, that old trial by Goudsmit and Ho Yen used pre-emptive rest which probably meant patients were instructed to rest completely (no reading or tv but more or less doing nothing) even though they felt they could do more without facing PEM. This wasn't helpful and apparently on some patients it had a detrimental effect because they were so bored. Both Goudsmit and Jason have been outspoken against the idea of pre-emptive rest partly because of these results. In the consensus document they advise against pre-emptive rest periods longer than 30 minutes in one go.

I don't fully understand why this is controversial. Could you explain your objections to this some more? Is it because you're affraid that this will be confused with the 30 min of resting after exercise that GET-manuals advise?

let's not give them a paper that suggests a consensus that exercise is beneficial when it's accompanied by or preceded by pacing.

I don't think the consensus document suggests that. I think the section on GET is only for people who are recovering and do not experience post-exertional relapses anymore.

That being said, I also think Goudsmit et al. focus a bit too much on exercise (probably because their advise is aimed at the heterogenous CFS-population in which some patients do not experience PEM) and I strongly disagree with viewing the symptom-contingent form of GET by Wallman as a form of pacing. So this is not the description of pacing as I would like it. But as I've mentioned before, If you do not refer to the studies by Jason and Goudsmit - who have published the most about pacing in ME/CFS - then it seems that everyone is free to make of pacing what he/she wants it to be. I haven't heard from those rejecting the Goudsmit/Jason consensus document how they would adress this problem.

I also think that if we were to analyse each paper on possible sentences that could be misinterpreted, then there won't be much left that we could give to NICE...
I didn't suggest NICE should take over all the info from the Goudsmit/Jason paper as if it was some sort of manual, I simply want it used to demonstrate that there is a consensus around pacing in ME/CFS that is very different from what pacing means in the chronic pain literature and the research by Antcliff et al.

 

[Invisible Woman]

As I understand it, that old trial by Goudsmit and Ho Yen used pre-emptive rest which probably meant patients were instructed to rest completely (no reading or tv but more or less doing nothing) even though they felt they could do more without facing PEM. This wasn't helpful and apparently on some patients it had a detrimental effect because they were so bored. Both Goudsmit and Jason have been outspoken against the idea of pre-emptive rest partly because of these results. In the consensus document they advise against pre-emptive rest periods longer than 30 minutes in one go.

My criticism of this is from my own personal experience. In the early years, before I learned from my mistakes I followed this type of advice. I did get bored and was religiously clock watching to make sure I didn't rest for too long.

The snag was that 30 minutes is almost precisely the wrong time period for me. I 've barely shut down before it's time to get moving again. An hour and a half suits me much, much better.

In the early days, before I !earned the hard way, I thought I was bored and I felt very restless. This restlessness and desire to get up and do something is actually a warning sign of PEM for me. In reality, I was in continuous PEM and should have been resting much, much more. Not less as advised.

Also, if I need to sleep during the rests then I absolutely should. If I don't then I am far less likely to sleep that night and this aggravates symptoms again the next day needing more rather than less rest and so on.

I very much agree with the need to try to define pacing, but putting something forward because it's the best we have, even though there are major flaws is a concern.

 

[NelliePledge]

I would say that being too rigid about what pacing is in practice eg specifying things like no more than 30 minutes preemptive rest detracts from what I think is a key aspect which is that it should be patient led. It is about learning to understand what works best for you to minimise symptoms. That might be shorter or longer preemptive rest periods, it might be using a 1 hour guided meditation or simply lying down for 20 minutes with some gentle music in the background , it might be switching between types of activity rather than stopping or stopoping and taking rest between activity. If you can understand some basic principles about working within your limits and how diffèrent types of activity can affect you, the need to have a balance of activity and rest during a day and across a week, then the specifics are going to be about individual trial and error. If someone gets more energy by sleeping for a couple of hours in the afternoon and they can fit their life round it why would they limit daytime rest to 30 mins not sleeping. It’s just a siesta.

ETA personally I’m a night owl so a lie in sleeping til late morning works more for me than sleeping in the afternoon. Also I don’t think it’s helpful to say there’s no need to break tasks up with rest as that might work for some people.

ETA2 now I’ve read properly the previous 2 posts I realise I’m broadly repeating @Evergreen and @Invisible Woman s points. I also agree concern expressed about implying the Goudsmit/Jason paper is the only authoritative source on pacing. I think @Evergreen has set this out really well.

 

[Evergreen]

@Invisible Woman and @Nellie Pledge have explained the problem very well.

@Invisible Woman needed to work through feelings of boredom to get the rest she needed, and she needed long, flexible periods of rest (sounds like both pre-emptive and recuperative but correct me if I’m wrong there @Invisible Woman). Had she done the Ho Yen programme after this study, she would have been told to limit her pre-emptive rest periods to 30 mins, and this would have been the wrong recommendation for her.

@NelliePledge explains that different people need different permutations and combinations of rest, both in terms of duration and nature, e.g. some will do best with music or meditation or a nap.

I have heard many patients say that there’s a delicate balance between resting enough for ME and not resting so much that they’re miserable.

I know that I need much longer periods of both pre-emptive and recuperative rest than 30 mins at a time, and have throughout the many severity levels I’ve experienced. Do I get bored sometimes? Sure. I’ve learned that that’s part of what getting what I need for my ME, and I’ve learned how to troubleshoot it. I’ve learned that a bit of boredom is preferable to my ME flaring horribly. I have to be much more isolated than I want to be in order to keep my ME at a level that allows me to maximise how much contact I have with people. So yep, gotta suck up some feelings of isolation.

I personally don’t get depressed, but I can see that if someone has clinical depression or anxiety alongside their ME, certain types of rest might exacerbate that, and they may need to manage things differently for a while to optimise the management of the two conditions. Similarly I can see that if someone is actually resting more than they need to, that would potentially be annoying, and should be reduced. For those individuals.

In scientific terms, we have an unevaluated recommendation that is potentially unhelpful ME-wise for the majority because of an unreplicated finding of 3 patients meeting Oxford and Ho-Yen criteria in a non-randomized trial with no active control who may have had untreated anxiety or depression (see below).

When the recommendation gets referred to in other papers without that important information (unevaluated, unreplicated, 3 people, non-randomized, no active control, untreated anxiety or depression in almost half of participants, small sample 22 patients), or when people evaluating evidence are not aware of the importance of that information, we can end up with unfounded recommendations making their way into guidelines. Our field is particularly prone to this because there is just so little research compared to other conditions. And we're particularly at risk of such an unfounded recommendation ending up in the new NICE guidelines because the current NICE guidelines already contain a completely evidence-free recommendation to restrict rest periods to 30 mins.

I'm going to use the term ME because that's how I've drafted this post and because recommendations for CFS tend to be applied to all, but Goudsmit, Ho-Yen and Dancey used the term CFS.

This was a very small trial – just 22 patients meeting Oxford criteria and Ho-Yen’s own criteria (and 22 controls). Patients were not randomized. Nearly half of those “recorded scores above the cut-off point for possible clinical anxiety and depression”. The authors mention that some participants would probably have benefited from referral to a therapist or more time discussing their emotions with the consultant. They recognize this as a limitation of the trial. So some of the patients, up to 10, potentially have under-treated pre-existing anxiety or depression during the trial. We’d expect that if we asked that group about their feelings at any time point, at least some of them would report “negative” feelings, regardless of whether they were or were not responding to treatment.

Despite this, at six months there was a “small reduction in the number of cases of possible anxiety and depression among the treatment group but not among the controls”. So the group did not become more anxious or depressed after the treatment, they became slightly less so.

But because three patients described the pre-emptive rest periods as ‘‘boring’’, ‘‘isolating’’ and ‘‘depressing’’, a recommendation was made to reduce pre-emptive rest times to 30 mins for all patients.

That recommendation was not evaluated – so we don’t know the effect of this reduction in pre-emptive rest on the three patients who found it challenging emotionally, and we don’t know the effect of this reduction on the 19 other patients who did not find the pre-emptive rest periods challenging emotionally. It’s possible that the change would have helpful for the 3 patients emotionally but unhelpful for the other 19 patients ME-wise. It’s possible that the change would have been helpful for the 3 patients emotionally but unhelpful for their ME, and that what they really needed was help for pre-existing anxiety or depression.


There are plenty of alternatives to the recommendation to reduce pre-emptive rest periods for all such as:

· Check how the patient is doing ME-wise and if feeling relatively well ME-wise but finding rests challenging emotionally, then suggest that that individual patient experiments with shorter pre-emptive rest periods. If their ME remains fine, then they may have just been resting too much. Leave the other patients as they are.

· Treat patients for anxiety and depression

· Include advice in the programme for what individuals can try if finding pre-emptive rest periods boring, isolating or depressing: suggestions could include changing the nature of the rest period by listening to music or an audiobook while lying down with eyes closed, or experimenting with the timing and length of rests to see what suits them best as individuals, or advising patients that this may happen so that they know to expect it, or talking with their therapist about whether they might be resting too much e.g. if they’re actually feeling relatively well ME-wise


Most importantly all of this needs to be evaluated in a larger, randomised trial and replicated in other trials before it should be recommended at all, and definitely shouldn't appear in something like the NICE guidelines.

As I understand it, that old trial by Goudsmit and Ho Yen used pre-emptive rest which probably meant patients were instructed to rest completely (no reading or tv but more or less doing nothing) even though they felt they could do more without facing PEM. This wasn't helpful and apparently on some patients it had a detrimental effect because they were so bored.

It's important to distinguish between ME and emotions here. The results showed a significant difference between groups in fatigue. So it was helpful for one of the main ME symptoms, albeit in a trial without an active control. Depression and anxiety rates did not go up, they went slightly down for the treatment group, and significantly so for anxiety. So it was also somewhat helpful for depression and anxiety. 3 of 22 people, of whom almost half had HADS scores indicating potential anxiety or depression, felt bored/isolated/depressed while they were doing their pre-emptive rests. That's it. We don't know how the 3 people fared ME-wise - it's possible that their ME improved, and we don't know if these feelings during their rests translated into any meaningful change in their overall mental health.

But as I've mentioned before, If you do not refer to the studies by Jason and Goudsmit - who have published the most about pacing in ME/CFS - then it seems that everyone is free to make of pacing what he/she wants it to be. I haven't heard from those rejecting the Goudsmit/Jason consensus document how they would adress this problem.

I'm not suggesting not referring to any studies by Jason and Goudsmit. In my post above I suggested the opposite - looking at their other publications to find a good description of pacing that doesn't include GET programmes. I think they've both done/are doing really valuable work and we're lucky to have (had) both of them working in the field.

I didn't suggest NICE should take over all the info from the Goudsmit/Jason paper as if it was some sort of manual, I simply want it used to demonstrate that there is a consensus around pacing in ME/CFS that is very different from what pacing means in the chronic pain literature and the research by Antcliff et al.

Yeah, I get that. I'm just urging caution with that particular paper for the purpose you described. I'd go with another one/few. Of all the publications by Goudsmit and Jason that I've read, that's the one that comes closest to the Antcliff version of pacing, because it goes into such detail about increasing activity. That little paragraph that specifies prerequisites for starting GET is not strong enough or emphasized enough, in my view, to combat the overwhelming pressure to get us to increase activity/exercise. The studies reviewed after that paragraph do not have those prerequisites. If the committee were composed differently, I wouldn't be as concerned. My point is simply that things that you intend for one purpose can be used for another by people who have opposing views or don't understand the issues.

 

[ME/CFS Skeptic]

Thanks for explaining @Evergreen!

I still have some doubts about this, though. I fear pacing will become an ambiguous name for all the behavioral interventions ME/CFS patients find helpful. It should be possible for pacing to be wrong. And it should be possible to criticize pacing even if there are many things in this energy strategy advice one finds useful.

I think both Goudsmit and Jason have made pretty clear that pacing and the energy envelope theory do not include pre-emptive rest (resting while you could easily do more without it resulting in PEM) and that they consider this advice to misguided - that was one of their main criticisms of APT as used in the PACE-trial and by Action for ME. So if you would like more emphasis on pre-emptive rest (or less cautions against it), I think you should criticize pacing for not doing this instead of trying to redefine pacing (or looking for a descripition by Goudsmit and Jason that is more opaque on this issue).

 

[Barry]

The snag was that 30 minutes is almost precisely the wrong time period for me. I 've barely shut down before it's time to get moving again. An hour and a half suits me much, much better.

To me this illustrates a key facet of pacing - there is no one-size-fits-all. In fact, given everyone's energy availability (including rate and pattern at which it can be drawn on) are very bespoke, I'm very wary of anything involving specifics. Needs to be sane budgeting of each individual's energy supply, including all the vagaries that unavoidably go with that.

 

[Invisible Woman]

So, it sounds like the bottom line is that even for pacing there has been insufficient research and follow up to identify what works and what doesn't etc.

To me this illustrates a key facet of pacing - there is no one-size-fits-all.

Indeed there isn't. Additionally, what you might need in terms of effective pacing might well change as your illness progresses, depending on the season (hard to rest properly when it too hot), hormones - I noticed obvious differences depending on where I was in the menstrual cycle and a need to rest more and so on. I am sure there are a great number of factors.

It also strikes me that some of the research predates some of our recent conversations about PEM and Lenny Jason's PEM questionnaire. Perhaps we could do with a similar pacing questionnaire?

 

[Evergreen]

Thanks for explaining @Evergreen!

I still have some doubts about this, though. I fear pacing will become an ambiguous name for all the behavioral interventions ME/CFS patients find helpful. It should be possible for pacing to be wrong. And it should be possible to criticize pacing even if there are many things in this energy strategy advice one finds useful.

I think both Goudsmit and Jason have made pretty clear that pacing and the energy envelope theory do not include pre-emptive rest (resting while you could easily do more without it resulting in PEM) and that they consider this advice to misguided - that was one of their main criticisms of APT as used in the PACE-trial and by Action for ME.

I think there are two different things getting conflated here – one is resting excessively and thus doing too little (as you might if following the 70% rule) and the other is resting pre-emptively.

The way you’ve defined pre-emptive rest there is not how the term is used in the literature. Resting while you could easily do more without it resulting in PEM is resting excessively.

Pre-emptive rest, as I understand it from the literature, is having some periods of rest before you trigger PEM, with a view to not triggering PEM as quickly or as intensively. It doesn’t mean that the person is resting excessively. They may well rest less overall than they used to when only resting once PEM became obvious, because in theory their PEM will be not as extreme.

In the writings I’m looking at, Goudsmit and Jason are not anti-pre-emptive rest. In the paper we’re discussing, they suggest 1-2 hours of pre-emptive rest per day. When discussing the implications of the PACE trial findings in particular, they state:

pre-emptive rest should be used to establish tolerance threshold and enable the individual to stay within their ‘envelope’. However, given the nature of ME/CFS, these periods may be increased during relapses, when a strategy such as that described in the combination programme might be helpful in returning the patient to a level of functioning where exacerbations are minimal or avoided.

They caution against excessive pre-emptive rest, which is a different thing. Similarly, GET proponents would caution against excessive exercise, but they are very much for exercise.

What Goudsmit and Jason do both caution against is the 70% rule used in the PACE trial (see their contributions to the Journal of Health Psychology special issue https://journals.sagepub.com/doi/abs/10.1177/1359105317707216 and https://journals.sagepub.com/doi/full/10.1177/1359105317695801).

Jason mentions pre-emptive rest in his contribution, only in relation to the possibility of increasing social isolation.

So if you would like more emphasis on pre-emptive rest (or less cautions against it), I think you should criticize pacing for not doing this instead of trying to redefine pacing (or looking for a descripition by Goudsmit and Jason that is more opaque on this issue).

As far as I can see, no-one here has said they want more emphasis on pre-emptive rest in a definition of pacing sent to NICE. No-one has looked for a definition of pacing that is more opaque on pre-emptive rest. So am not sure what you mean there.

I don't see a problem with us all having the discussion we've been having. When a researcher sets out their definition of pacing, we get to critique that definition if we want to. We can say what we do and do not agree should be part of the definition based on our experience and our understanding of the wider literature. We also get to say if we do or do not think it’s a good idea to give a particular article to NICE and why. And we get to say to what extent the definition matches or falls short of our own experience. Jason responded so well to patient feedback on his work on PEM, and that can't have been easy.

As @NelliePledge said above, no-one has a copyright on pacing. In the same way, the GET researched by Wallman is very different from the GET researched by the PACE team, but they’re both forms of GET.

I think most here if not everyone agrees that it’s important to distinguish pacing from increasing activity/exercise. I think it's possible to do that for NICE without coming to any kind of agreement on a definition of pacing.

I’m looking at a 2005 pacing guide that Goudsmit prepared for WAMES (Welsh patient organisation) and it’s wonderful. I wish I’d had it from day 1. I need to do all she says and more, perhaps because the course of my ME is different than the improvement over time assumed in the guide. She’s very clear to distinguish her pacing from what she calls “newer versions of pacing” that advise increasing activity levels every few days. I think what we seem to agree on is that we want approaches with planned increases in activity/exercise to stop being called pacing or versions of pacing.

[Edited to remove reference to GETSET because they're keen that graded exercise self-help be distinguished from graded exercise with a therapist.]

 

[ME/CFS Skeptic]

I think there are two different things getting conflated here

Yes, sorry I think we agree on content but simply used a different definition of pre-emptive rest.

I thought it meant rest that isn’t aimed at preventing PEM or post exertional relapses but instead at helping recovery. The Goudsmit and Ho Yen paper you refer to for example writes:

“Ho-Yen advocates both recuperative rest, a response to symptoms and aimed at avoiding the exacerbations triggered by over-exertion, and pre-emptive rest, aimed at conserving energy and promoting recovery.”​

So I supposed the rest needed to balance energy expenditure isn’t the type of rest she is referring to and criticizing here. I would find it strange if Goudsmit would prescribe a fixed amount of rest for ME/CFS patients as of course this depends on how sick you are. Some people need to rest much more to balance their energy expenditure than others.

So I presumed she (and you) meant the type of rest that is unrelated to preventing PEM. I agree it is weird that the consensus document describes the pre-emptive rest from the Ho-Yen trial as rest that forms part of the day’s schedule to stay within the ‘envelope'. In the trial description it seems more like prescribed rest by therapists, not the rest patients felt they need to be productive or prevent PEM. To me the advise of the consensus document, limiting pre-emptive rest to prevent rumination and excessive focusing on symptoms, makes more sense in the former and not the latter definition.

Pre-emptive rest is also the term Goudsmit and Jason use to criticize Adaptive Pacing Therapy (APT) and the 75% as used in the PACE trial. Jason for example wrote:

“By doing less than what patients have the energy to do, and the resulting pre-emptive rest, this intervention could even have the unwitting effects of increasing social isolation.”​

So I sort of used the term in this restricted sence in the beginning of our discussion:

Preemptive rest is resting when you could easily do more, believing that this will help the body to heal itself. This was an aspect of Adaptive Pacing Therapy as used in the PACE-trial.

Some people for example prefer doing less than their capable of, believing that this restores their health. The 70% rule is an example of this strategy which we could preemptive rest.

Sorry if I created confusion.

Cheers,

 

[Evergreen]

Yes, sorry I think we agree on content but simply used a different definition of pre-emptive res

Yes, exactly! I think these kinds of discussions are helpful - I definitely sharpened up on what Goudsmit and Jason did and did not say in various publications as a result. And it's interesting to see everyone's comments. You never know, it could be helpful for the NICE patient representatives too, if they're reading...

 

[BeautifulDay]

To me this illustrates a key facet of pacing - there is no one-size-fits-all. In fact, given everyone's energy availability (including rate and pattern at which it can be drawn on) are very bespoke, I'm very wary of anything involving specifics. Needs to be sane budgeting of each individual's energy supply, including all the vagaries that unavoidably go with that.

I agree with @Barry

In our family with mitochondrial disease caused by the same mtDNA variants, we each have different energy needs. Several of us in the family are also diagnosed with ME/CFS. The men in our family are more likely to have autistic spectrum and have other health issues (such as needing a pacemaker when fairly young). Here are the top ten items I have heard over and over again from our Mito Clinic’s doctors and by the presenters (mito experts) at the UMDF (United Mitochondrial Disease Foundation) conferences:

1) Energy used cannot exceed energy produced and stored.

2) Doctors cannot accurately measure energy available both in the body as a whole and also in individual organs and body systems. Therefore, the most important thing to know is to listen to your body and act accordingly. Nobody by looking at you can see a cold coming on, or the energy needs of a child who is about to have a growth spurt, or the impact of hormones or aging on energy. Until doctors can do this, doctors must listen carefully to what patients tell them regarding how they feel and what is impacting them. Patients with mitochondrial disorders experience a more profound effect from items that steal energy because their defect is in energy production and usage. Patients with mitochondrial disorders not only don't make energy as well, they don't use it as well.

3) While it is difficult to see a patient’s pattern for energy produced, used, and the resulting symptoms -- patients can over time and through experiences determine their needs and road map better than doctors can. Finding that pattern and the triggers and the items that help them provides patients with a sense of control and helps patients get back to their baseline quicker after energy dips and crashes. Anticipating problems and making changes early reduces the lows.

4) Conserve energy. Don’t get run down. Pace activities (this must be patient driven).

5) Avoid items that are known to negatively impact your energy (temperature fluctuations, eating an hour late, exposure to illness, overdoing it, etc….).

6) Mitochondrial disorders are unpredictable. They can change from one day to another and from one hour to another.

7) Patients must be taught the importance of pacing.

8) Patients should be provided with the tools for pacing.

9) Patients should be taught how to keep track of pacing. For those of us with children who are ill, we are taught to listen to our children and recognize changes (and complaints). Changes in skin color, respiration, temperature, energy level, behavior, alertness, foot drop, and gastrointestinal changes – all of these (and many more) can be indications of a dip or crash in energy that is coming on. Energy usage and conservation are especially important at such times.

10) Create a check-list of the issues you have seen in the past before dips or crashes have occurred and recognize them in the future.

 

[Unable]

I seriously question that anyone takes “too much rest”.

Frankly, in my view, people will tend to get up, and try to do stuff so long as physical well-being allows it. (The only exception to this is perhaps clinical depression, but that is a different issue.)

MUCH MUCH more difficult a thing, is to stay inside that energy envelope.

 

[Invisible Woman]

MUCH MUCH more difficult a thing, is to stay inside that energy envelope.

I found that actually stopping and resting takes much more self discipline than any exercise regime, sports training or study plan ever did.

Apart from the attempt to smear our collective characters, I don't know where this idea that we will all fall into our beds the moment someone stops hectoring us started.