Is there such a thing as to much rest with CFS?

[panckage]

@justy I have no idea what you are ranting about. Before you even posted:

I think the question for most PWME is whether or not they are physically able to do enough exercise in order to prevent deconditioning

Stephen Hawking is not... any more sick BECAUSE he is deconditioned -

I'm not sure why I'm even responding to this but realize what you saying. This is like saying someone with AIDS is not anymore sick because they develop an AIDS related condition like kaposi's sarcoma

 

[TiredSam]

I think the question for most PWME is whether or not they are physically able to do enough exercise in order to prevent deconditioning

This is not a question for me because the amount of exercise that I need to do to prevent decondtitioning is none whatsoever. I think that's the point that a few PWME on this thread have been ranting on about.

 

[daisybell]

@panckage sorry but you can't make a valid comparison between PWME and someone with MND/ALS who has by definition a disease that results in severe muscle wasting. That's worse than comparing apples and pears.

 

[justy]

@justy I have no idea what you are ranting about. Before you even posted:



I'm not sure why I'm even responding to this but realize what you saying. This is like saying someone with AIDS is not anymore sick because they develop an AIDS related condition like kaposi's sarcoma

Ranting is a pretty bizarre word to be using in this context and I think amounts to an ad hominem attack.

To clarify. Are you saying that people with moderate and severe ME should not allow themselves to become deconditioned because to do so would make their overall health significantly worse?

 

[barbc56]

o clarify. Are you saying that people with moderate and severe ME should not allow themselves to become deconditioned because to do so would make their overall health significantly worse?

I can't speak for @panckage but I did not get that impression.

Deconditioning has to occur. It's a consequence of any severe illness.

But for most of us it's not even an option to exercise. It goes with the territory. On top of this we have PEM which makes matters even worse. It's simply beyond our control to do this.

I guess what I'm saying is that not being able to exercise is the consequence of our illness and not the cause. But to deny that deconditioning doesn't occur at all does not make sense as far as how the body works. Unfortunately, any positive benefits trying to get in condition are outweighed by the harm.

It doesn’t mean if we just exercised, tried a little harder we'd feel ever so much better and a cure is just around the corner. It's not even close to the mindset of Wessely et. al. Maybe that's the problem and people think any mention of deconditioning or any exercise, means you align with that camp. That's like asking a person who is paralyzed and in a wheelchair to tapdance.

If I am going to have any semblance of a life, I have to rest, need frequent naps and limit my activities. I might take a very short walk if I'm able but that doesn't happen very frequently. I'm beyond feeling I have to explain this more than once to others who are well. It's my reality and not theirs. But it took me years and years to come to that conclusion.

I know as a consequence of this illness I have to be somewhat deconditioned. But whatayagonado? I'm dancing as fast as I can.

 

[Seven7]

ok do not shoot me but here is what I have learn in 10 years and many many many relapses.
1) You will not get better unless you rehab "excercise", I think as if I had a brain stroke and have to start to relearn everything from scratch. Mentally and physically.
2) I used to use my energy for increasing living activities (cooking, more time for family) but I have learn that there are activities that will help get better and others that just use energy and you need a balance. Make life worth living activities but enough to get better everyday.
3) You will get PEM while you increase the "rehab" to progress you will get a litlle bit of PEM but not crash. and the line is so thin that has become an art. But I am glad another person that got better told me this because without understanding that I would never would of gotten progress / better myself.
4) You need the mito / excercise recovery supplements (doctor prescribed ones) Baking soda or alkalized water,COQ10, L_glutamine, oils and detox baths.
5) If you can afford see a CFS exercise specialist. If not read on it and try it out at your own pace, learn to balance the activity that takes vs the activity that gives.
6) Preventive rest is great, I have a general rule for house activities, I always rest as long as I do activity (this kind of activities are taker not givers) so If I cook for one hour I will test for one hour or double that in a bad day.

 

[Valentijn]

1) You will not get better unless you rehab "excercise"

Research disagrees ... GET does not lead to any objective improvements in physical functioning.

3) You will get PEM while you increase the "rehab" to progress you will get a litlle bit of PEM but not crash.

PEM is a crash. If you are only experiencing symptoms starting during or immediately after activities, these are a different form of exercise intolerance, probably related to orthostatic intolerance.

4) You need the mito / excercise recovery supplements (doctor prescribed ones) Baking soda or alkalized water,COQ10, L_glutamine, oils and detox baths.

For most of these things, there is no evidence that they help, especially with ME or PEM. Additionally, many (most?) of us have probably tried similar supplements and protocols, with no improvement.

learn to balance the activity that takes vs the activity that gives.

This is psychobabble straight from the BPS handbook. Activity is activity, and it all uses energy. Energy is not generated merely from doing something fun.

 

[justy]

But to deny that deconditioning doesn't occur at all does not make sense as far as how the body works

I certainly didn't deny that deconditioning occurs. what I said was that its not that big a deal in the grand scheme of having moderate/severe ME and that it isn't going to make the health issues significantly worse. Its not worth worrying about it is what I said.

Activity is activity, and it all uses energy. Energy is not generated merely from doing something fun.

In fact for me, quietly doing something I don't want to do is less taxing than doing 'enjoyable' activities such as laughin or sitting with friends. Just laughing too much causes the most awful crashes, and im sure that's fun!

 

[alex3619]

There is one issue with deconditioning that does worry me. While the muscles can be retrained relatively quickly its not possible to restore bone density lost from too much bedrest. I wish there were more research on this in ME. I know of some people, anecdotally, with severe osteoporosis and similar, after years and years of bedrest. I do not know how common that is. What we really need is some method to induce bone stress so that the bone continues to maintain itself, while at the same time not aggravating our compromised energy system.

 

[panckage]

Dr. Klimas believes that deconditioning is a major issue:

“Deconditioning can explain much of the dysautonomia (autonomic nervous system problems) present in CFS
...
Deconditioning, Dr. Klimas said, is a significant problem in the ME/CFS community and if you’re unlucky enough to be deconditioned you’re going to suffer, and, she feels, probably needlessly.

http://www.healthrising.org/blog/20...ng-exercise-and-recovery-the-klimas-cdc-talk/

 

[Seven7]

Research disagrees ... GET does not lead to any objective improvements in physical functioning.


PEM is a crash. If you are only experiencing symptoms starting during or immediately after activities, these are a different form of exercise intolerance, probably related to orthostatic intolerance.


For most of these things, there is no evidence that they help, especially with ME or PEM. Additionally, many (most?) of us have probably tried similar supplements and protocols, with no improvement.


This is psychobabble straight from the BPS handbook. Activity is activity, and it all uses energy. Energy is not generated merely from doing something fun.

I am talking based on experienced and getting myself out of bed so many times. Also learning from the plp that are high functioning. GET does not take under account AT. There are Drs that rehab cfs the right way. That is what I am talking about. I am not talking excercise in the normal sense but rehab like you would any desease.

 

[cmt12]

Deconditioning is more of a psychological issue rather than a physical one. The extreme case where a patient claims they can't speak and have to ingest food through a straw doesn't have a more severe form of this condition, and isn't in that state simply from resting too much; it's due to how that person is reacting to their ME/CFS symptoms.

Pacing/avoidance is fine as a general strategy, but it can be harmful when it becomes religion.

 

[Sushi]

Deconditioning is more of a psychological issue rather than a physical one.

This is a very controversial (bordering on offensive) statement. Please back up this claim with some good studies.

a patient claims they can't speak and have to ingest food through a straw doesn't have a more severe form of this condition, and isn't in that state simply from resting too much; it's due to how that person is reacting to their ME/CFS symptoms.

Again, where is your evidence. We have patients here on feeding tubes, patients who are unable to speak--they have a severe medical condition, not an attitude/adjustment problem.

 

[cmt12]

This is a very controversial (bordering on offensive) statement. Please back up this claim with some good studies.
Again, where is your evidence. We have patients here on feeding tubes, patients who are unable to speak--they have a severe medical condition, not an attitude/adjustment problem.

It is a moderate position. On one end, you have psychologists claiming this is completely a psychological condition with no physical basis (as if such a thing exists), and on the other end there are patients who refuse to consider that the severity of their symptoms can be affected by anything other than the physical. Again, my position is a moderate one compared to those extreme positions.

 

[Sushi]

It is a moderate position.

Not on a forum for ME/CFS patients.

 

[Valentijn]

It is a moderate position. On one end, you have psychologists claiming this is completely a psychological condition with no physical basis (as if such a thing exists), and on the other end there are patients who refuse to consider that the severity of their symptoms can be affected by anything other than the physical. Again, my position is a moderate one compared to those extreme positions.

It's a ridiculous position with no basis in reality. Since when is any disease completely consistent in its symptoms and severity for every patient?

A "compromise" position is not moderate or reasonable when all of the scientific evidence is on the biological side.

 

[Jenny TipsforME]

If someone is deconditioned (not ME related) eg injury they can usually regain fitness progressively and fairly easily. The problem we have is attempting to do more can end up making us less fit.

This last month or so I've been more boom and busty I think from trying to increase activity a little. My POTS doctor thinks this is the next stage (but bear in mind he asked me if I was going to the gym when I was sitting in front of him in a wheelchair). I find if I do more I then flare up and I'm horizontal for a few days, bad for POTS deconditioning. This isn't what I'm doing, but if you measured in steps perhaps it would look like this:

300 steps a day comfortable = 2100 steps a week
600 steps pushed 1 day, 3 days bed 100 steps, 3 days 200 steps = 1500 steps a week

So staying in my limit keeps me fitter and is a better quality of life!

However as I think @alex3619 said, this is a topic with loads of caveats. We may well be in different subgroups and my experience may not chime with you. For the POTS/ME subgroup I think it's also important to interpret PEM/fatigue correctly. Before also getting the extra POTS diagnosis I kept raising the severe difficulties I had walking (talking inability to get across the room sometimes). Medical staff told me that this was fatigue. Whenever I got concrete legs I stayed in bed because it was 'fatigue'. It's not fatigue, it's blood pooling and can be improved by salt, cardio drugs and compression tights. It isn't improved by resting in bed (although sometimes with POTS it is so exhausting you need to lie down). I deconditioned more unnecessarily.

In the past I got back to 95%, which was slightly mysterious but I didn't push myself I just gradually did more as I felt able. I probably don't need to say, but I didn't get worse again through deconditioning, there were definite viral triggers and probably over doing activity.
When I improve again I'm going to try hard to maintain fitness without over doing it.

 

[lansbergen]

Since when is any disease completely consistent in its symptoms and severity for every patient?

Indeed

 

[TiredSam]

It is a moderate position. On one end, you have psychologists claiming this is completely a psychological condition with no physical basis (as if such a thing exists), and on the other end there are patients who refuse to consider that the severity of their symptoms can be affected by anything other than the physical. Again, my position is a moderate one compared to those extreme positions.

On one side of my house, I have a neighbour who has murdered two wives and collected the insurance money. On the other side of my house I have a neighbour who refuses to consider murdering his wife. I have decided to adopt a moderate position compared to those extreme positions, so I'm going to murder my current wife and collect the insurance money, then marry again, but not murder my second wife.

 

[A.B.]

Deconditioning is more of a psychological issue rather than a physical one. The extreme case where a patient claims they can't speak and have to ingest food through a straw doesn't have a more severe form of this condition, and isn't in that state simply from resting too much; it's due to how that person is reacting to their ME/CFS symptoms.

Pacing/avoidance is fine as a general strategy, but it can be harmful when it becomes religion.

You seem rather out of touch with reality. Extreme cases are simply declared to be a case of the person reacting differently. An unfalsifiable statement. How many extreme cases have you examined, what qualifications do you have? I'm guessing none.ME/CFS isn't your personal playground where you can present your bizarre fantasies as fact.

Sorry to the rest of the forum if I'm being harsh but this delusional mentality to simply know the truth in area where objectivity doesn't exist needs to vocally opposed.