How many times do I have to hear this?

[alex3619]

I agree Gamoa, but eventually could be twenty or thirty years. That does not detract from the fact that we need recognition asap - we can't simply wait for it to happen. Bye, Alex

PS I wrote this because I am concerned that some might interpret your statement as saying its going to happen anyway, why bother fighting, atlhough that was not the intent of the statement. We need everyone working as best they are able, without inducing crashes, to make it happen sooner.

I havent checked your references but I just reread several of the Light's papers a few days ago, and one of their coloured bar charts clearly shows the problem. Of note is the issue that one of the adrenergic receptors is still rising at the end of day 2. Has it peaked, or does it continue out for more days?

 

[biophile]

Do you have a blog site?

No. I meant the blog function at this forum.

 

[urbantravels]

I havent checked your references but I just reread several of the Light's papers a few days ago, and one of their coloured bar charts clearly shows the problem. Of note is the issue that one of the adrenergic receptors is still rising at the end of day 2. Has it peaked, or does it continue out for more days?

Some of the worst PEM's I've had - including the one I experienced after the Pacific Fatigue Lab testing - have actually made themselves known on the third or even fourth day after the exertion. This is usually a hard pattern to discern, but it was very clear in the case of the PFL test, when I knew exactly when the exertion had been. Immediately after the test, I didn't feel good, but I was functional enough to get home and get settled in before the worst of the PEM hit - and then the crash lasted at least four or five days after that; about 2 weeks before I'd say I was more or less back at baseline.

 

[alex3619]

Hi urbantravels, recovery from PEM can indeed take a long time. My earlier point was with respect to a specific blood marker. The Japanese put PEM out to five days in one of their studies. Depending on what you mean by PEM, I think two weeks is about as long as I have ever taken - but usually I have crashed again in that time frame (this was in the late 90s when I was crashing almost ever few days).

With respect to post exertional damage, I think it can be permanent - no recovery. Muscle pain and weakness from excessive physical activity at work led me to have 15 years before I saw signs of recovery. Even now, an additional few years later, my muscles are still stuffed sometimes. There are layers to PEM, and not all of it is the easy to recover kind of thing.

My interest though is blood markers. Clearly the Light's research did not go out far enough, although I think it was reasonable what they did given limited resources. I would like to see a study going out many more days, maybe ten, and with a broader range of blood markers looked at if they can figure out some others that might be interesting.

Bye
Alex

 

[Nielk]

In my esperience PEM or PENE can possibly take months or never to come back to your base normal state. I have progressively worsened by PEM effects and I don't think I ever got back to my starting point. Have they taken this in consideration in the studies of PEM? That perhaps at times it could leave a permanenet mark?

 

[Ocean]

In my esperience PEM or PENE can possibly take months or never to come back to your base normal state. I have progressively worsened by PEM effects and I don't think I ever got back to my starting point. Have they taken this in consideration in the studies of PEM? That perhaps at times it could leave a permanenet mark?

Me too Neilk. That's why now I guard my energy so religously. People in my life may not understand but I refuse to expend energy I know I can't afford. I have had to many setbacks that I did not fully recover from and that took months just to see some improvement.

 

[Nielk]

Me too Neilk. That's why now I guard my energy so religously. People in my life may not understand but I refuse to expend energy I know I can't afford. I have had to many setbacks that I did not fully recover from and that took months just to see some improvement.

Unfrtunately, we learn the hard way. It is very hard to estimate upfront how much any activity will affect us. Caution is very much recommended. In this case imo) less is better. Will the people who are pushing us to excercise be responsible for the permanenet damage they are causing us?

 

[Hell...Hath...No...Fury..]

Just been reading through the thread and I could feel the frustration rising just by reading the title of the post! i didn't even have to read the post to know what it was going to be about lol.
After 13 years I still find myself totally bemused, baffled, infuriated and/or deranged by people's comments and 'helpful' opinions. I chose to make myself homeless 4 years ago just to get out of my parents house. I mentally snapped because of my Dad and his disgraceful behaviour towards me and my illness. As I lay there rotting away over the years, I gradually inched my way closer and closer to the actual reality that I may one day crawl to the top of the stairs, wait for him to step over me and get angry because I was in his way and reach out a hand and make him fall down the stairs. The thought of this actually cheered me up which was when i knew i had to get out. In a monumental explosion between us in which i told him exactly what I thought of him and he in return told me to f*ck off, i packed my bags and was out of there forever. My only regret is that I was too ill to do it 10 years earlier.
I now still have a relationship with my mother. Her comments can also be quite hurtful and often ridiculous but I try my best to ignore it as she's the only family I now have.
But because of what I went though while living at home, this has made me exceptionally less tolerant of know it alls and people who think they're expert about me and my life just by mentioning ME.
I don't waste any energy what so ever on most people these days, just interacting with a select few. I would rather be alone than be surrounded by people who look down on me, think they're better than me, don't believe what i say, belittle my suffering or behave like its all my fault or my choice to be ill just because they know someone who 'once had CFS who magically recovered'.
When i'm outside, I can spot them a mile off. I can tell what type of attitude they're going to have before we've even exchanged words more often than not. If i find myself stumbling upon someone particularly offensive or obnoxious spouting the usual ME comments, I generally just say, 'can I just stop you there.....' and shuffle away with a big grin on my face

 

[Ocean]

I would rather be alone than be surrounded by people who look down on me, think they're better than me, don't believe what i say, belittle my suffering or behave like its all my fault or my choice to be ill just because they know someone who 'once had CFS who magically recovered'.

Oh my God, Hell Hath No Fury, so well said. I am feeling this very strongly today. I've been sharing less and less with people I know but even so when I do have interactions with others inevitably they express one of more of these attitudes. It eventually gets to a point where dealing with these people brings me more harm and stress than good and support, and I continue to cut them more and more out of my life. It's not ideal but when a relationship is more negative than positive, what is the alternative. I especially relate to what you said about belittling suffering, in my opinion when people dismiss my reality by telling me I'll be better soon (not realistic) or I just need to cheer up or have a better attitude that is exactly what they're doing. I'm not interested in talking to people who continually deny or dismiss the difficult reality of my life.

 

[urbantravels]

Hi urbantravels, recovery from PEM can indeed take a long time. My earlier point was with respect to a specific blood marker. The Japanese put PEM out to five days in one of their studies. Depending on what you mean by PEM, I think two weeks is about as long as I have ever taken - but usually I have crashed again in that time frame (this was in the late 90s when I was crashing almost ever few days).

My point was not about recovery from PEM, but to point out that it's entirely possible that many of these proposed biomarkers may peak quite a while after the 24 hour mark, although it does not seem that anybody is studying biomarkers or exercise capacity at the three, four, five day mark or beyond. (What was that Japanese study you reference looking at - symptoms, biomarkers, exercise capacity, or ??)

I'm not proposing, for instance, a PFL-style test with a maximal exertion stress test every day for three or four days, yikes - but I wonder what would be found, for instance, if you tried the test on day 1 and then again on day 3 or day 4 instead of day 2. Would performance be better after a day or two of rest - or would it in fact have declined even further despite the intervening rest period? An interesting question.

I have no opinion or information on "permanent damage" being done by any one PEM or by multiple episodes of PEM; all I've ever seen is anecdotes, which, however convincing-sounding, have no way of controlling for other possible confounding factors; and the people who do NOT believe they have suffered this effect never pipe up when the subject comes up, so there is a colossal selection bias whenever the anecdotes start flying. Without some actual scientific evidence, I simply don't know what to think.

I do not believe that I myself have suffered any lasting damage from a single episode of PEM, but I've only had a few *really* severe ones in two years of illness. I have been fortunate enough to be able to avoid any situation where I had to *repeatedly* exert myself to the point of repeated severe PEMs. But who knows - maybe that's what triggered my onset in the first place - I was exercising strenuously on a regular basis right up to the point where I suddenly couldn't.

 

[Nielk]

Just been reading through the thread and I could feel the frustration rising just by reading the title of the post! i didn't even have to read the post to know what it was going to be about lol.
After 13 years I still find myself totally bemused, baffled, infuriated and/or deranged by people's comments and 'helpful' opinions. I chose to make myself homeless 4 years ago just to get out of my parents house. I mentally snapped because of my Dad and his disgraceful behaviour towards me and my illness. As I lay there rotting away over the years, I gradually inched my way closer and closer to the actual reality that I may one day crawl to the top of the stairs, wait for him to step over me and get angry because I was in his way and reach out a hand and make him fall down the stairs. The thought of this actually cheered me up which was when i knew i had to get out. In a monumental explosion between us in which i told him exactly what I thought of him and he in return told me to f*ck off, i packed my bags and was out of there forever. My only regret is that I was too ill to do it 10 years earlier.
I now still have a relationship with my mother. Her comments can also be quite hurtful and often ridiculous but I try my best to ignore it as she's the only family I now have.
But because of what I went though while living at home, this has made me exceptionally less tolerant of know it alls and people who think they're expert about me and my life just by mentioning ME.
I don't waste any energy what so ever on most people these days, just interacting with a select few. I would rather be alone than be surrounded by people who look down on me, think they're better than me, don't believe what i say, belittle my suffering or behave like its all my fault or my choice to be ill just because they know someone who 'once had CFS who magically recovered'.
When i'm outside, I can spot them a mile off. I can tell what type of attitude they're going to have before we've even exchanged words more often than not. If i find myself stumbling upon someone particularly offensive or obnoxious spouting the usual ME comments, I generally just say, 'can I just stop you there.....' and shuffle away with a big grin on my face

I can feel your anger, frustration and pain through your written words. I'm sorry you had to go through such misery! It is one of the most disturbing aspects of this illness, that we suffer physically so much and are so limited in activity yet, we in addition have to put up with the scorn of the world. It is a very heavy burden to carry. The problem is that we can't change the world, only ourselves. The only thing we could do is try to raise awareness of this illness but, even there, we are misbelieved.

 

[Nielk]

My point was not about recovery from PEM, but to point out that it's entirely possible that many of these proposed biomarkers may peak quite a while after the 24 hour mark, although it does not seem that anybody is studying biomarkers or exercise capacity at the three, four, five day mark or beyond. (What was that Japanese study you reference looking at - symptoms, biomarkers, exercise capacity, or ??)

I'm not proposing, for instance, a PFL-style test with a maximal exertion stress test every day for three or four days, yikes - but I wonder what would be found, for instance, if you tried the test on day 1 and then again on day 3 or day 4 instead of day 2. Would performance be better after a day or two of rest - or would it in fact have declined even further despite the intervening rest period? An interesting question.

I have no opinion or information on "permanent damage" being done by any one PEM or by multiple episodes of PEM; all I've ever seen is anecdotes, which, however convincing-sounding, have no way of controlling for other possible confounding factors; and the people who do NOT believe they have suffered this effect never pipe up when the subject comes up, so there is a colossal selection bias whenever the anecdotes start flying. Without some actual scientific evidence, I simply don't know what to think.

I do not believe that I myself have suffered any lasting damage from a single episode of PEM, but I've only had a few *really* severe ones in two years of illness. I have been fortunate enough to be able to avoid any situation where I had to *repeatedly* exert myself to the point of repeated severe PEMs. But who knows - maybe that's what triggered my onset in the first place - I was exercising strenuously on a regular basis right up to the point where I suddenly couldn't.

I don't think that one case of PEMleaves permanent damage but, consistent or multiple episodes of PEM, I believe shocks our system further into more and more severe illness state.
How else would you explain the fact that many of us get progressively worse? When all other possible effects staying equal, the only thing left is the PEM incidences (imo) that aggravates our condition.

I'm just saying this from my own personal experience. I have been ill for 10 years and have had many incidences where I had a PEM reaction which aggravated my condition. Each time, it weakened my condition where now I am more disabled then ever.

If I compare this to my previous illness, Crohn's disease which I suffered from for 15 years starting in my teenage years. This illness also ebbed and flowed but there was no difference inthe severity of my illness overall from day 1 to year 15. I had the same amount of crashes and blockages.

This leaves me with the opinion that the specific symptom of PEM or PENE in CFS/ME does aggravate my condition. I wonder if others have had the same experience?

 

[Dreambirdie]

I especially relate to what you said about belittling suffering, in my opinion when people dismiss my reality by telling me I'll be better soon (not realistic) or I just need to cheer up or have a better attitude that is exactly what they're doing. I'm not interested in talking to people who continually deny or dismiss the difficult reality of my life.

DON'T FORGET THE NON-HUMAN COMPANIONS

Real compassion is a rare thing. Very few humans are capable of it or willing to try. If someone doesn't have the capacity or the willingness, then I have found it best to not include them in my intimate circle of friends.

When I need good company, and there are no kind humans around, I open myself to Nature, and talk to the trees or the ocean or the stars. Pelicans have proven to be very relaxing company. Seagulls are a bit obnoxious, but very entertaining. There was a frog that lived in a clay pot outside my window, who was a great companion through a very lonely time, and a cricket who moved into my house for several months during the winter back in 1997, who was a fantastic chirper. I fed him crumbs of leftovers, and left a plastic lid full of water for him to drink from and wade in. After we got to know each other, he would let me tickle his antennas. I rescued him from the spiders three times, but the fourth time they got him.

My point here is that humans are not the only creatures on earth, and in reality humans are the LEAST EVOLVED of all the animal species. Other creatures have been here for millions of years. Homo sapiens have only been here about 250,000, modern humans (the hunter gatherer/tool makers) for about 50,000. So really we have a lot to learn from other creatures, most of which seem to me to be more alert, more sensitive and more conscious than many of the humans we share this earth with.

 

[Dreambirdie]

THE COMPASSION OF ANIMALS (True Stories of Animal Courage and Kindness)
http://www.amazon.com/Compassion-Animals-Stories-Courage-Kindness/dp/0761518088

This is a book after my own heart. Just wanted to add it as an adjunct to my last post.

 

[Hell...Hath...No...Fury..]

Totally agree with you Dreambirdie

 

[donnie1234]

graded exericse has helped me immensely. it so important for me to maintain a decent level if fitness while im receovering, but by no means is it the cure! its just one of many lifestyle things that help me- like good sleep, low stress etc- while you're working out the cfs jigsaw puzzle. by exercise i mean walks and light weights training. ill make any sacrifice i have to to do it

 

[Carrigon]

I am a former women's bodybuilder. "Former" because of this disease. I worked out two and a half hours per day at the gym prior to getting sick. And then I would come home and do another half hour on my exercise bike and might even put in more weight training. I was in top military shape prior to getting sick, and I loved the gym. There is nothing on this earth that would have stopped me from going to the gym. This illness stopped me. Anyone who is helped by working out and claims they have this disease, doesn't have the same thing I've got. If I dare to try any exercise now, even just alittle, it can put me down for a whole month. I am no longer energized by exercise, I have the opposite. I get PEM, I also get swollen glands, yeast infections, all kinds of stuff if I try to exercise. The disease will not allow me to do so. And it's not from lack of trying over the years.

I have a friend who was also a former female bodybuilder and has our illness. She can't work out either now. And I've met others who were into different sports and such, in top physical condition prior to getting ill. I was very good friends with a man who was a kickboxing champion and had a room full of awards. This illness destroyed all that for him. He used to be in tournaments all the time. He was always training. The disease stole that from him. If exercise was the answer, we wouldn't be sick today. It is NOT the answer.

 

[Nielk]

I agree with you Carrigon.
Maybe, it's just a matter of severity or the size of our "envelope". I know my personal envelope has been steadily shrinking. What I was able to do five years ago, I can't do today. You are right though that the PEM or PENE criteria is crucial for a ME/CFS diagnosis.

 

[Valentijn]

graded exericse has helped me immensely. it so important for me to maintain a decent level if fitness while im receovering, but by no means is it the cure! its just one of many lifestyle things that help me- like good sleep, low stress etc- while you're working out the cfs jigsaw puzzle. by exercise i mean walks and light weights training. ill make any sacrifice i have to to do it

I think the problem is that for many (most?) people with ME/CFS, exercise makes everything much worse, even just walks and light weights. Recovery can't happen if we're making ourselves sick by trying to stay fit.

 

[November Girl]

An important thing to remember is that exercise is moving and using our bodies. For some people, walking across a room is strenuous exercise, and they shouldn't be doing it. In my experience, moving at a comfortable pace for me has always been helpful. But for years I pushed myself to do the maximum possible, as opposed to what I could do without crashing.

I've finally accepted not doing things that I think need doing. I'm more likely now to overdo on those rare cases that I'm around people I like and am enjoying myself. The emotional high kind of drowns out all the physical signals I'm getting to stop and rest. Fortunately these outings are only a few times a year, and I'm getting a bit better at acknowledging the cost of these in the days to follow. DH tries to monitor me, and encourage me to leave earlier than I do. I think I'll try to listen to him next time.