Poll: did strict pacing help you?

[Martin aka paused||M.E.]

Yeah I think you have to be well enough that you have a spare "buffer" of energy that can potentially repair things. It has nothing to do with mind/body connection.

I don't know who it is likely to work for, but there are a number of people who have reported benefits in the threads Judee linked. There might only be a subset of people who respond, but these guys did it for literal months before they noticed any benefit.

Meditation is just helpful for mental health and also saves more energy as you don't have as much of a constant stream of thoughts also sapping energy and driving you crazy.

Yeah I think it's all about how severe you are. And I think that only a subgroup is susceptible to get severe. Because many crash for a week and then go back to baseline while severe patients can't afford any crash.

 

[GlassCannonLife]

Yeah I think it's all about how severe you are. And I think that only a subgroup is susceptible to get severe. Because many crash for a week and then go back to baseline while severe patients can't afford any crash.

Yeah but I also mean some people seem to benefit from this extreme rest more than others.

I originally was talking about just strict pacing, ie you do all you can but try your hardest to never crash/cause any PEM at all.

Then there's the Aggressive Rest Therapy (ART), where you specifically have periods where you aren't allowed to do anything even if you feel up for it, just so you save some energy for healing. Eg one of the more successful guys did 15 min of normal activity (I think he was severe still though) and then 45 min of forced rest, lying down in a quiet, not too bright room doing absolutely nothing. And he did that every hour he was awake for a few months, whereafter he started improving more and more from doing it.

I'm thinking I'll try gradually introduce something like this into my day, today I did a 20 min meditation and then a 30 min session of just lying on my bed doing nothing. If I can do this for a week or two I might increase it but it is hard to commit to.

 

[Martin aka paused||M.E.]

Yeah but I also mean some people seem to benefit from this extreme rest more than others.

I originally was talking about just strict pacing, ie you do all you can but try your hardest to never crash/cause any PEM at all.

Then there's the Aggressive Rest Therapy (ART), where you specifically have periods where you aren't allowed to do anything even if you feel up for it, just so you save some energy for healing. Eg one of the more successful guys did 15 min of normal activity (I think he was severe still though) and then 45 min of forced rest, lying down in a quiet, not too bright room doing absolutely nothing. And he did that every hour he was awake for a few months, whereafter he started improving more and more from doing it.

I'm thinking I'll try gradually introduce something like this into my day, today I did a 20 min meditation and then a 30 min session of just lying on my bed doing nothing. If I can do this for a week or two I might increase it but it is hard to commit to.

The only thing I wanted to say is that it doesn't work when you're very severe

 

[Learner1]

Not sure if any of you have seen this which came out last week, which gives a very good explanation of our illness:

Looking at the clues here, many of us have hidden infections that our doctors have not found or treated. Toxicity too. And some have spinal issues.

If this is indeed the case, strict pacing may allow us to fight the infections if we are lucky, but it will not fix toxicity or spinal issues. Furthermore, infections, immune system activation and toxicity deplete nutrients, so if we go and exercise without replenishing these depleted nutrients, we will most likely worsen over time.

As a former athlete, I've exercised all through this illness, in tiny increments, with non-aerobic exercise like weight lifting, yoga, and slow walking with ample rests, replenishing nutrients (particularly BCAAs, other aminos, and antioxidants) and providing supporting nutrients like NAD+. Over time, as my several Infections were treated and immune system supported, and a program to repair mitochondrial fragmentation caused by herpesviruses (see Prusty's papers and Thomas Seyfried's Mitochondrial Correction paper) and treating autoimmunity, I was able to gradually (in fits and starts, not smoothly) increase my activity level.

Strict pacing without looking at infection status, immune status, nutrient status, structural issues affecting nerves, and life stressors does not make sense to me. Avoiding deconditioning and slowly building strength and functionality does.

- is this actually the rate at which I would be improving globally (not out of a crash) if I was to pace perfectly ie not trigger any symptom worsening or PEM? It is around maybe 1 point of the CFIDS Scale per month (if I don't flare up!)

Doubtful. The IV vitamin C can help attack infections and it aids in recycling glutathione, reducing oxidative stress which would help your performance. Other nutrients would be useful, too.

- is there something different between crash recovery and overall global recovery? Why do we seem to reach these arbitrary "set points"? Or are they simply illusions but we immediately overdo things the instant we feel less symptomatic?

I believe so. I have had a trend of global recovery for 4 years, though I have experienced PEM and setbacks like a recent sinus infection that are interruptions (or reversal) of the trend. It is very useful to have a global treatment plan that attacks the issues vanElzakker and Proal discuss, while feeding ample nutrients to repair mitochondria and membranes over the long term as well as before exertion to avoid PEM in the short term.

- I have seen some stories of people recovering substantially (or completely) from pacing over long periods of time (years). I couldn't find a recent poll here though.

It is possible that their immune system eventually clears the hidden infection(s) they have or that they improve their depleted nutrient status and microbiome over time.

But, for most of us, my guess is that lying around waiting to get better is not going to improve status and that it will take persistence in uncovering treatable problems and effective treatment to make progress. I know this seems difficult, and it is, but we are sick and need treatment to unravel this illness.

 

[Martin aka paused||M.E.]

But, for most of us, my guess is that lying around waiting to get better is not going to improve status and that it will take persistence in uncovering treatable problems and effective treatment to make progress. I know this seems difficult, and it is, but we are sick and need treatment to unravel this illness.

I think so too. There are many sign of CMV and HHV6 reactivation but I’m very scared of the side effects of Valcyte. We bought one but I haven’t touched it yet.

 

[Learner1]

I think so too. There are many sign of CMV and HHV6 reactivation but I’m very scared of the side effects of Valcyte. We bought one but I haven’t touched it yet.

CMV has 4 drugs that work - 3 are IV only and Valcyte us the only pill. It's also effective against HHV6.

I spent 12 months on 1.8g a day then another 8 on 900mg daily, starting in 2017. I have been on it again since my COVID vaccine reactivated HHV6 in April. I've had no ill effects. I do get a CBC and CMP done every month as a precaution, and my liver enzymes are always slightly elevated, but they are when I'm not on it .

There's a video somewhere where Jose Montoya said Valcyte got a bad name for liver and kidney issues because it was mainly used in advanced cancer and AIDS patients who are very delicate and are already prone to liver and kidney issues, but for most ME/CFS patients, they do fine.

CMV and HHV6 cause mitochondrial fragmentation and fatigue, so until they are beaten back, no matter how much strict pacing you do, it's not going to fix the underlying cause.

 

[Martin aka paused||M.E.]

CMV has 4 drugs that work - 3 are IV only and Valcyte us the only pill. It's also effective against HHV6.

I spent 12 months on 1.8g a day then another 8 on 900mg daily, starting in 2017. I have been on it again since my COVID vaccine reactivated HHV6 in April. I've had no ill effects. I do get a CBC and CMP done every month as a precaution, and my liver enzymes are always slightly elevated, but they are when I'm not on it .

There's a video somewhere where Jose Montoya said Valcyte got a bad name for liver and kidney issues because it was mainly used in advanced cancer and AIDS patients who are very delicate and are already prone to liver and kidney issues, but for most ME/CFS patients, they do fine.

CMV and HHV6 cause mitochondrial fragmentation and fatigue, so until they are beaten back, no matter how much strict pacing you do, it's not going to fix the underlying cause.

I'm rather concerned about my fertility

 

[Learner1]

I'm rather concerned about my fertility

That can be a concern. I guess it's worth weighing the pros and cons. I had cytomegalovirus that may be very ill and caused 2 miscarriages. This discusses CMV infection and n sperm donors. CMV is responsible for birth defects.

https://www.seattlespermbank.com/what-is-cmv-and-how-can-it-affect-my-pregnancy/

The question remains, do these viruses go away on their own? And will strict pacing help? According to the link I just provided It says that reactivation of CMV is very rare, However I know of at least three patients who have had it reactivated creating significant symptoms, and given Proal's talk above, it may be that these viruses do not show up in the blood, though the ME/CFS research community is starting to realize that they can be hiding in tissues.

I think one can exercise carefully, but working on these drivers of the underlying root cause instead of ignoring them as soon as doctors have done is more likely to lead to successful outcomes. And, as parenting requires an awful lot of energy, best to be in good shape to be able to deal with babies and sleep deprivation and run after toddlers.

No easy answers though.

 

[Martin aka paused||M.E.]

And, as parenting requires an awful lot of energy, best to be in good shape to be able to deal with babies and sleep deprivation and run after toddlers.

No easy answers though.

You nail it.

 

[GlassCannonLife]

@Martin aka paused||M.E. @Learner1

You both raise good points but I think you're missing what I'm saying.

Martin - the lady in one of the threads Judee linked (feel free to read them) did ART from being very severe, where she felt she would have needed a feeding tube but instead just went days without eating. It can clearly have some effect regardless of severity in some amount of cases (perhaps not if you're as bad as eg Whit).

Learner - I agree that you should address underlying pathogens and other issues. However, I feel that this could be an added help that people are not utilising. I'm not saying to become completely deconditioned. I have already said multiple times in this thread, that you just replace some of your rest with extremely idle rest.

I was also very fit and healthy (don't know if I'd say athlete) before I became ill, I had weight trained and done cardio since I was in my mid teens, extremely consistently (maybe took a few months off in the whole near 15 years).

Now I am ill to the point where I can't go for slow walks or do gentle yoga without causing PEM, so aside from walking around my house to do basic life tasks, occasional minor chores, and interacting with my toddler, I lay down to rest the majority of the day. I do this normally on my phone the entire time, reading, watching shows/YouTube, writing on forums/discord, etc. At these times I am physically doing nothing.

I'm sure there are many others just as ill, or more ill than me, who also expend up to their tolerable energy output limit being on their phone (eg if I watch things that are too intense, I get worn out and get PEM, so my normal use must be near my limit).

The idea is that it's worth exploring doing absolutely nothing in some of these periods to use the extra energy for healing. I would still be lying down (so no extra deconditioning), just have less mental stimulus/exertion.

I'm not saying this will work for everyone, and it might not work for me. But if you look at those threads, in addition to hearing such success stories on reddit etc over the years, I think there is sufficient evidence to indicate that -some- people may benefit.


The virus/toxin etc idea is difficult to unpack, as there is no way of knowing how serious any of the confections or toxic burdens are.. How can we be fine for some time then become much worse? Eg how did I go from mild to moderate to severe within 6 months? Did my viruses go into different tissues? Did the toxins mobilise? I don't actually know how this works in ME/CFS - how can we get worse with no changes but can't get better the same way (to a point)?

 

[Strawberry]

I did strict pacing when I was still mild and had huge benefits, that I blew by doing too much. I’m close to moderate now and it does squat to pace.

 

[Judee]

But the game changer was an off label med that increased blood pressure and lowered heart rate.

@Float, do you mind if I ask as well what this medication is?

 

[Rufous McKinney]

The idea is that it's worth exploring doing absolutely nothing in some of these periods to use the extra energy for healing. I would still be lying down (so no extra deconditioning), just have less mental stimulus/exertion.

thats what I need to achieve: the complete give up. the absolute do nothing.

I've been adding a larger window of Do Absolute Nothing. At least I've not crashed in a whole two weeks!

 

[Learner1]

Learner - I agree that you should address underlying pathogens and other issues. However, I feel that this could be an added help that people are not utilising.

If you tag me, I'll know you answered me, so apologies for answering now ..

Most of the people I've talked in depth to and seen labs and gotten their doctors to run more labs turn out either to have one or more chronic, hidden infections. I think this is a low hanging fruit. The problem is, most doctors don't run adequate testing, don't repeat testing (Amy Proal says infections may be in the tissues and not always in the blood, so repeating negative testing may turn something up), and then don't interpret testing properly, then don't prescribe anything to help the patient, in the mistaken belief that people's immune systems will clear the infection(s).

The idea is that it's worth exploring doing absolutely nothing in some of these periods to use the extra energy for healing. I would still be lying down (so no extra deconditioning), just have less mental stimulus/exertion.

I hear what you are saying, but doing this regularly can lead to a deconditioning spiral if nothing else is done, too.

This illness, and hidden infections, toxicity, etc. deplete the body's resources. Activity demands resources. Replenishing diminished resources with mitochondrial and immune support resources, like B vitamins, antioxidants, carnitine/acetylcarnitine, NMN/NAD+, CoQ10/PQQ, amino acids, and mineral cofactors, gets biochemical pathways working better to support immune function, energy production, and activity.

So, while rest is important, and I do it myself, too many people are depleted in resources needed to support improved function.

The virus/toxin etc idea is difficult to unpack, as there is no way of knowing how serious any of the confections or toxic burdens are..

They deplete the immune system, damage mitochondria, trigger a wide variety of autoimmune antibodies, deplete collagen, and impact energy production and immune and nervous system function. They are the linchpin of improvement for many patients. I won't pretend everyone has an active infection, but too many have sneaky infections sapping resources, and destroying lives.

How can we be fine for some time then become much worse? Eg how did I go from mild to moderate to severe within 6 months? Did my viruses go into different tissues? Did the toxins mobilise? I don't actually know how this works in ME/CFS - how can we get worse with no changes but can't get better the same way (to a point)?

I have 2 herpesviruses that haunt me. They wait for me to have a little more activity, a little less sleep, physical or mental stress, less nutrition, let up on my antiviral, and start up again. One has immediate symptoms I'm aware of, the other I track through regular PCR testing, and I've been following them now for 6 years. I'm think it's quite easy to get worse by subtle changes one is not aware of and as the body gets laloafed down by the activities of the virus, resources are depleted faster, and other things stop working as well, and one is in a downward spiral.

Rest can help, but if one is too sick, without any other intervention - immune support, antiinfective, nutrients, rest won't do much beyond making one feel better briefly.

 

[nina22]

I tried for a few months. But if the issue is that we can not longer store reserve energy in our adrenals, then prolonged rest won’t make much difference and that’s been my experience. It didn’t accumulate.
And to be honest, the depression and anxiety that came from doing nothing caused me way more crashes than exercise does… so me, I’m using all the spoons I get. I just really respect my crash line.

 

[Davsey27]

Yes,

But I believe that the environment needs to be enough.Otherwise pacing and resting will increase the toxic burden when in a sick building and have the opposite effect

Seems like there is context to some of these things

 

[Arius]

Staying within my energy limits definitely reduces my suffering. Crashes are horrible, I have a lot less energy, barely enough to even functionally survive, and they hurt a lot. But it has no lasting benefit that I can see, I have been pacing myself for years but all it does is stop me crashing and suffering badly I don't recover in any way from it. I just don't get worse if I pace well.

Same. Pacing is great for preventing crashes but does nothing to actually heal me.

Since I improved my pacing, especially taking a 2 hour nap immediately after my morning meal, my energy has just been more even throughout the day. I don't have MORE energy, just the little energy I do have is spread out evenly. If I mess up my napping routine or do too much I immediately feel the effects.

People have remarked "you seem to be improving" since I got good at pacing myself. I'm not improving, I'm just managing better.

 

[TinaYesen]

Same. Pacing is great for preventing crashes but does nothing to actually heal me.

Since I improved my pacing, especially taking a 2 hour nap immediately after my morning meal, my energy has just been more even throughout the day. I don't have MORE energy, just the little energy I do have is spread out evenly. If I mess up my napping routine or do too much I immediately feel the effects.

People have remarked "you seem to be improving" since I got good at pacing myself. I'm not improving, I'm just managing better.

Same here. I could have written the message above. I wake up, eat, relax for an hour or two, then go back to sleep for a 2 hour nap. Then I get back into bed right after dinner around 7:30pm. People have remarked I seem improved. That's frustrating, because I haven't. I still can't work or exercise (except rare occasions), still can't manage a house or live on my own, etc. I'm just not falling into terrible week long crashes every other week from trying to go to a ballet class or trying to work.

 

[TinaYesen]

Then there's the Aggressive Rest Therapy (ART), where you specifically have periods where you aren't allowed to do anything even if you feel up for it, just so you save some energy for healing. Eg one of the more successful guys did 15 min of normal activity (I think he was severe still though) and then 45 min of forced rest, lying down in a quiet, not too bright room doing absolutely nothing. And he did that every hour he was awake for a few months, whereafter he started improving more and more from doing it.

I used a type of Agressive Rest Therapy after I first got sick. I basically stayed in bed the first two months after my virus & ME started, only getting up to eat 3x, then back to bed. I recovered to 95%. I went back to work full-time, ballet classes, and hiking. I felt totally normal. I had NO symptoms. I wasn't just balanced or having a decent day, I felt NO PEM, no head fullness, no pain, nothing.

Then, a few weeks into being fully recovered and exerting at a normal pre-ME capacity, within one hour on a busy work day, I could literally feel my ME & POTS coming back--and then my life forever changed and I haven't felt better since.

It's a very curious and intriguing aspect of my onset for me.

But, for most of us, my guess is that lying around waiting to get better is not going to improve status and that it will take persistence in uncovering treatable problems and effective treatment to make progress. I know this seems difficult, and it is, but we are sick and need treatment to unravel this illness.

I actually think, and with my own proof, that radically resting (like for 6 months) right after the initial infection can be the difference between recovering fully, or having ME/CFS for life.

 

[Florida Guy]

Pacing is essential or the person will go downhill fast. That seems fairly well established. By pushing through which is the opposite of pacing, pw/cfs get worse. On the other hand, and no doubt I will be yelled at again for saying this, you do need to exercise some if able

The body becomes flabby and deconditioned if its not moved and worked enough. People who were confined to bed for years due to a condition that was eventually cured, were not able to walk and took years of physical therapy to recover.

Most of us can do some walking or other forms of mild exercise. If we can only walk a block without causing pem, we should do that regularly. If we give up and say no more walking, then that ability is gradually lost. By doing as much varied movement as possible within our energy limits, we maintain the body's fitness to some degree. Once people hit severe, it becomes more difficult or impossible

I keep as active as possible by doing things like walking around the house, taking care of little things. I always lie down at least once during the day for half hour to an hour. No phone no nothing just lay back and think about what I should do the rest of the day or something. That seems to recharge the batteries a bit but staying in bed is no good even though sometimes its tempting

I have a hand weight, not too heavy and try to lift it with each hand each day. More than that might create pem in the arms or if I still feel it from the previous day I will skip a day. I can walk a block, two blocks might not work but I can do one. I can watch videos all day, no problem, make plans, think about things, but too much physical and I get pem or crash

People who got better by and large were careful not to over exert, they paced and they also were careful about their health, took vitamins and so on. They also tried treatments that worked for other people and now and then found something that helped. Over time they got better, those who pushed through or neglected themselves, usually got worse