CBT/GET recoveries

[alex3619]

According to which definition of the illness?

I took it to mean regular muscle deconditioning. Its a minor secondary consequence of ME. Most of us will do more if our ME improves.

There is no established primary role for deconditioning in ME. Its not that it does not occur, its that its not the main limiting factor.

Similarly there are a few severe patients who are bedbound long enough to get osteoporosis or similar, due to bone weakening. While muscles can be reconditioned, bones cannot, so its even more worrying.

I used to be the guy with the party trick, I could open any screw top bottle or jar in under a second. Too easy. Yesterday I tried to pick up my fan and move it. I struggled.

I think the evidence from Workwell indicates that restoring a modicum of strength is slow and very limited in what it can do. In time they and others may figure it out. However the single best cure for deconditioning is a cure for ME. Or a good treatment. There are so many things we want to do that any improvement in our basic health can lead to more activity.

I used to do dynamic tension exercises. They are like isometrics but you pit one muscle against its antagonistic muscle. I think both isometric and dynamic tension exercises can be overdone. Weights are even more problematic, as we need to use heavier weights to decrease aerobic activity, with lower repetitions, but such weights might be more problematic because they might be too heavy for us. We do not respond like the average person.

 

[SOC]

I don't disagree at all with the Workwell strategy of developing strength using low-level anaerobic metabolism... once one is able to handle ADLs. For many PWME the activity required just to do simple activities like walking across a room, taking a shower, or cooking a meal is harmful. Exercise (in the traditional sense) of any sort is foolish under those circumstances. PWME in that situation are as strong as their bodies allow them to be. Pushing them to do more under the guise of improving ME symptoms is unkind at best.

I do strength and flexibility exercises now -- very carefully, and in small increments. I didn't start until I was able to shower, cook, clean house (mildly), shop, and work a little bit. At that point it was a matter of how to use my little bit of extra energy -- socialize a bit in the evening or regain some strength. I decided regaining some strength would be more advantageous to me in the long run. I don't pretend it's doing anying for my ME symptoms. It's not. I'm not getting more function out of doing it. In fact, I have to do less in order to exercise. But I'm hoping that over time I will find it a little easier to lift the grocery bags I'm already lifting, that I will feel a bit less old and stiff, and that getting out of a chair will be a little easier. None of that has anything to do with ME symptoms.

I don't think we should go along with the GET crowd and conflate symptoms of other conditions (even if we have them) with ME symptoms. If some of us get deconditioned muscles from not being able to do much, that doesn't make deconditioned muscles (much less muscle atrophy) a symptom of ME. Saying the symptoms of other conditions are ME symptoms just leads to people saying treatments for these other conditions are treatments for ME, which they most definitely are not.

Not every symptom a PWME has is a symptom of ME. Some PWME have depression. That doesn't make depression a symptom of ME. It may be secondary to having ME, but it's not an ME symptom. We need to keep the description of ME clean. There are already enough people out there trying to clutter the understanding of what makes up ME, the last thing we need is to start doing it ourselves.

 

[Mij]

I don't think we should go along with the GET crowd and conflate symptoms of other conditions (even if we have them) with ME symptoms. If some of us get deconditioned muscles from not being able to do much, that doesn't make deconditioned muscles (much less muscle atrophy) a symptom of ME. Saying the symptoms of other conditions are ME symptoms just leads to people saying treatments for these other conditions are treatments for ME, which they most definitely are not

Some of us can be "symptom free" and be tricked into thinking we can exercise. We can't be compared to other conditions- that's for sure. Doing more does not improve our baseline over time. Some of us can improve and 'exercise' but that is also not a guarantee it's ok to do so . I can power walk as long as I'm no swinging my arms, looking upwards or downwards etc, but light weights (or anything with resistance) will put me out.

 

[panckage]

How do you feel after?

Sometimes a bit better, sometimes a bit worse, sometimes the same. On average probably a little bit better

I think non-aerobic strength and flexibility training is where the exercise physiologists are working toward. In time there will be guidelines.

Its hard to tell. This forum seems to be very anti-exercise but then again we have some real personalities on this board. Several people have pmed me to talk about stimulants. The common theme among them is that they felt bullied when they posted about it in this forum so they only wanted to discuss it privately. It would be great if we could have more open conversations here

 

[heapsreal]

Sometimes a bit better, sometimes a bit worse, sometimes the same. On average probably a little bit better


Its hard to tell. This forum seems to be very anti-exercise but then again we have some real personalities on this board. Several people have pmed me to talk about stimulants. The common theme among them is that they felt bullied when they posted about it in this forum so they only wanted to discuss it privately. It would be great if we could have more open conversations here

I wouldnt say people are anti exercise. Many of us were serious exercises when we got cfs and have tried many times to get back into it only to crash.

Any cardio type exercise is out for me as i crash very quick but have been able to do some weight training if i do it in a way that doesnt tickle the cardiovascular system too much. But even then eventually a crash occurs and it could be a few days or say a week and everthing is lost fitness wise and i have to start from scratch. Normal people dont loose any training fitness with a break of a few days or a week.

So i have been able to improve certain aspects of fitness but its lost quickly and its never realky done much to cfsme. If anything it makes life more a juggling act

 

[SOC]

This forum seems to be very anti-exercise...

I think you are misreading people. I've seen no one here be anti-exercise. I think we'd all like to exercise if we could. What we are opposed to is exercise being touted as treatment for ME, or pushed on PWME because "it's good for everyone." By the definition of the illness, we all have an exacerbation of ME symptoms with exercise. Some of us can get away with very limited and careful exercise without exacerbation of symptoms, but it's not what most people would recognize as exercise. We're not anti-exercise, we're anti-exercise-as-treatment-for-ME, which is perfectly sensible given the nature of the illness.

So yes, people here do object to someone coming here pushing exercise. That's like going to a celiac support board and pushing people to eat lots of grains because grains are an important part of every human diet.

 

[panckage]

There is no established primary role for deconditioning in ME

Yes certainly it is a secondary condition caused by our inability use our body in normal ways

So i have been able to improve certain aspects of fitness but its lost quickly and its never realky done much to cfsme.

It's a bit up and down for me as well. I'm not always able to keep up and sometimes go weeks/months without exercise.

I do find that keeping core/legs strong makes a big difference in my quality of life. Before I wasn't able to bend over the sink and wash dishes for more than a minute or so. I thought this was due to CFS/OI but since I started strengthening it I can now wash dishes for 10+ min when I'm feeling good. I can also bend over and pick things of my floor when I drop them without feeling like passing out a lot of the time now.

Muscular deconditioning worsened my symptoms quite a bit. Since my ME is considered mild I would bet many PWME have worse muscular deconditioning than I did. Whether they can tolerate the exercise to improve it is of course an entirely different matter!

eventually a crash occurs and it could be a few days or say a week and everthing is lost fitness wise and i have to start from scratch. Normal people dont loose any training fitness with a break of a few days or a week.

I have the same experience as well. I always assumed it is from lying down too much. Do you know of any research relating to this specific issue?

 

[mermaid]

With all the articles posted online from experts saying cbt/get improve or help cfsme recovery from this illness, there must be a number of people on this forum, which is probably the most popular involving mecfsers, that have improved/recovered from cbt/get or exercise .

Can those who have significantly improved or recovered with cbt/get or exercise please post here. Also if you had before and after nk function testing or other immune/infectious testing showing improvements , please post.

If whats been posted in studies or in news paper articles on exercis/cbt/get etc etc, we should have a significant number of posts in this thread from people who its helped. And how long people have had this improvement .

Cheers

I know this won't be popular to mention it here, but I do have an old friend who developed CFS (I use that word advisedly as that is what she was diagnosed with) after I became ill and who went on to do Lightning Process (not wanting to discuss LP as such but this is how it happened for her.... I am not a fan of it!).

She had been ill for around 3 years and was very limited in what she did (though not housebound) and had stopped work due to the illness. She decided to practice the LP in a Graded Exercise kind of way in that she paced her activity rather than going all out for it. So not classic GET but her own version of it. She gradually built up her walking stamina time in particular which she hadn't been able to do before. I am still in contact with her and she appears to be fine now. In fact she came to stay with me a couple of years ago so I have seen her in action.

I used to wonder how this worked out for her, since I did not get better as she did. I observed that she didn't seem to have the complexities re her immune system that I did - I have spent years constantly struggling with viruses. She did not have an autoimmune condition for a start (I have 2).

Also she was only ill in all for 3 years and from what I have read it's sometimes possible to recover if the person is within the first few years of falling ill (maybe further things happen long term to the body that make it harder for the person to recover - certainly autoimmune illness is hard to recover from). I had been ill for longer than she had, but was only mildly affected until I got whooping cough which relapsed me badly at the time. She did seem to have some condition that developed that meant she could not consume dairy products, but having omitted them perhaps that enabled her body to recover more easily.

 

[IreneF]

I think you are misreading people. I've seen no one here be anti-exercise. I think we'd all like to exercise if we could. What we are opposed to is exercise being touted as treatment for ME, or pushed on PWME because "it's good for everyone." By the definition of the illness, we all have an exacerbation of ME symptoms with exercise. Some of us can get away with very limited and careful exercise without exacerbation of symptoms, but it's not what most people would recognize as exercise. We're not anti-exercise, we're anti-exercise-as-treatment-for-ME, which is perfectly sensible given the nature of the illness.

So yes, people here do object to someone coming here pushing exercise. That's like going to a celiac support board and pushing people to eat lots of grains because grains are an important part of every human diet.

I agree with this. I used to exercise, but eventually the exercise made me feel so much worse that I had to stop. I would love to return to it.

Where I am anti-exercise is in regarding it as a cure. Lots of people have gotten deconditioned and had the experience of getting back into shape. The lived experience of CFS/ME is entirely different, and you are likely to make yourself worse by attempting to exercise yourself back to health.

 

[IreneF]

And another thing--this bears repeating--until we have a reliable diagnostic test, there's no way to know if a random person who says they have CFS/ME/CFIDS etc. actually has what you have or I have. So stories about how GET or CBT or homeopathy (or whatever) cured cousin Freddie's sister-in-law's friend from work have to be taken with more than a grain of salt. Besides, just because you saw it on the internet doesn't mean it's true.

 

[alex3619]

And another thing--this bears repeating--until we have a reliable diagnostic test, there's no way to know if a random person who says they have CFS/ME/CFIDS etc. actually has what you have or I have.

A corollary of this is that there is no way to tell if exercise will help or harm right now without actually trying it. Even the 2 day CPET requires exercise to show the problem, though I think that might not be necessary (I think many will be at or beyond their anaerobic threshold without any planned activity) , but this is only speculative at this point.

If a person has a history of exercise not working then the only safe assumption is that it is likely to continue not working. If a person has a history of harm from exercise, then the only safe assumption is that this will continue. The deconditioning hypothesis of ME is dead, as is the fear avoidance model. They do not match the evidence.

I used to dream about running, long before Forrest Gump. Not so much lately, but I would dearly love to run. I play open world computer games sometimes just for the fake experience of running around. I would love to get into weight training. I miss being able to take charge of things, and do the ordinary things everyone takes for granted.

Generally speaking we are anti treatments that do not work, or can do harm, though if someone does respond then we see no reason why they should not do whatever it is. Just don't promote it as "the cure".

The reason why we want to know about people who responded is the PACE trial and other CBT/GET studies and proponents claim they can get people recovered. In the UK recovered is often conflated with "on the path to recovery". The PACE criteria for recovery overlaps with severe disability. So how many actually recover? A rare patient here or there? We almost never hear recovery stories, and the details when we do hear them are often vague.

Since the misdiagnosis rate is probably upward of 40% (with a floor of about 5% with careful diagnosis), and recovery seems to be fairly rare for longer term patients (under 10% or even 1%?) then we would expect to see studies like PACE produce many many recovered patients just by chance. They cannot even do that.

PS Just yesterday I played some GTA5 with another ME friend. I commented it was nice to stand in the rain and the weather. Just to experience fake weather. Most ME patients are not able to handle the everyday things that the general population takes for granted.

 

[Sea]

I do find that keeping core/legs strong makes a big difference in my quality of life. Before I wasn't able to bend over the sink and wash dishes for more than a minute or so. I thought this was due to CFS/OI but since I started strengthening it I can now wash dishes for 10+ min when I'm feeling good. I can also bend over and pick things of my floor when I drop them without feeling like passing out a lot of the time now.

Muscular deconditioning worsened my symptoms quite a bit. Since my ME is considered mild I would bet many PWME have worse muscular deconditioning than I did. Whether they can tolerate the exercise to improve it is of course an entirely different matter!

I have the same experience as well. I always assumed it is from lying down too much. Do you know of any research relating to this specific issue?

Building up muscle strength, particularly in the legs and core, is recognised as being very helpful in many cases of OI. The muscular support helps the veins to constrict properly when standing instead of allowing blood to pool in the legs. For some people with only OI it can help them be symptom free as long as they keep up the exercise. They seem to need to be stronger than average, not just not deconditioned.

It may be because your ME is mild that you are able to exercise sufficiently to be able to make a difference to the OI.

For those whose OI is secondary to other conditions exercise is not always possible and, even when it is, sometimes doesn't make a difference to the OI.

 

[elliepeabody]

Interesting discussion.
I'd love to be able to exercise, used to do a lot of gardening, dog walking, swimming. I aslo found it very soothing psychologically especially the early morning dog walk in the dark. Had a black lab at the time so I put a flashing collar on him so he didn't disappear into the shadows. We used to walk round the churchyard which was a very peaceful start to the day.

Prior to my illness I also used to do yoga. Now, when I am well enough I have found I can do some of they lying down gentle stretches without pushing my HR up. I hope that I am at least maintaining some flexibility especially as I have recently been diagnosed with osteoporosis, at a relatively young age (early 50's)