Pacing at different stages of illness

Jenny

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I don't usually pay much attention to this lot - much of what they say is psycho-babble and they seem to have only a superficial understanding of this illness - but there's some perceptive observations here about stages of ME and pacing. See 'Art of pacing' section a little way down.

http://www.freedomfromme.co.uk/blog/

Jenny
 

Adam

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I like the idea that mitochondrial dysfunction can be treated by supplements. I like the idea. However, there is no evidence to support this. The experts disagree. Co enzyme q10, should, again, work in theory. The idea is nice. In reality however no one has proven its efficacy. They are relatively cheap (compared to the cost of anti-virals - should they ever become available to us on the NHS - I'm not holding my breath).

What the article did not seem to address (i skim read the latter half of it) was what most CFS/ME patients with major post-exertional malaise report, is that we reach a ceiling of activity we CANNOT break through. The ever upward graph they use to illustrate 'recovery' is for most of us pie in the sky.

Thanks anyway for the link Jenny. I had not come across this site before.

Adam
 

Sunday

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I'm guessing the missing factor here is methylation. I've tried scads of supplements, some of which had some effect, some of which had no effect. What RichvanK and Fredddd say is that methylation is upstream of everything; without the methylation none of the supplements can be properly used, and the mitochondria can't function. I'm on the "Hidden Story" protocol, and I'll be curious to see if it gets me through that ceiling. It did for Freddd.
 
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Confused...

I'm confused about the repeated reference to "recovery" in this article. Does it mean full recovery, or pacing so well that symptoms are eliminated? If XMRV proves to be cause and ME/CFS/XAND the effect/disease with which not all with XMRV become ill, is this saying one can fully recover from the disease while never getting rid of the cause?

Thanks for the reference to this article Jenny. It was helpful in that I am currently experiencing, thanks to a change in my pain med and specialized physical therapy, a lot less pain and have been increasing my activity level, probably too much. I know you gave a bit of a disclaimer. I'm wondering if you saw contradiction in it... Or is it just me? It said graduated exercise therapy was not good in that the goal is to continually increase activity to an optimum level, but also said pacing, if done well, will bring recovery and activity to an optimum level. What am I not getting here?

Resting, within, at least : )
 

Jenny

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I'm confused about the repeated reference to "recovery" in this article. Does it mean full recovery, or pacing so well that symptoms are eliminated? If XMRV proves to be cause and ME/CFS/XAND the effect/disease with which not all with XMRV become ill, is this saying one can fully recover from the disease while never getting rid of the cause?
PHP:
Thanks for the reference to this article Jenny. It was helpful in that I am currently experiencing, thanks to a change in my pain med and specialized physical therapy, a lot less pain and have been increasing my activity level, probably too much. I know you gave a bit of a disclaimer. I'm wondering if you saw contradiction in it... Or is it just me? It said graduated exercise therapy was not good in that the goal is to continually increase activity to an optimum level, but also said pacing, if done well, will bring recovery and activity to an optimum level. What am I not getting here?
PHP:
Resting, within, at least : )
I think this clinic likes to give everyone the impression that the majority recover more or less completely. The info on their blogs and message boards is very upbeat - presumably to give people hope.

I think they're just saying that grad exercise therapy tends to take a 'one size fits all' approach. But what we have to do is learn to listen to our bodies - sometimes we can and should increase activitiy, and sometimes we shouldn't. Just common sense perhaps. But I think the way they set out specific stages of the illness is quite useful and fits with my experience at least.
 

Hope123

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What the article did not seem to address (i skim read the latter half of it) was what most CFS/ME patients with major post-exertional malaise report, is that we reach a ceiling of activity we CANNOT break through. The ever upward graph they use to illustrate 'recovery' is for most of us pie in the sky

Adam
This is the same conclusion reached by Bruce Campbell who runs an online course teaching pacing. He's a behavorial psychologist who used to run chronic disease management programs before he came down with CFS. (He was one of the lucky ones who recovered to more or less 100% after a few years.) When I read his book, he states in there that his experience working with hundreds of CFS sufferers was that although some were extremely careful with pacing, they would hit a ceiling they could not get over while others who were not as strict, some managed to improved gradually. He concluded that he must have some genetic quirk that ultimately helped him recover along with his resting and pacing. It sounded like he hardly took any supplements. So he saw pacing more as a method to control symptoms better and get a slightly better quality of life but not really as treatment.
 

gracenote

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This is the same conclusion reached by Bruce Campbell who runs an online course teaching pacing. He's a behavorial psychologist who used to run chronic disease management programs before he came down with CFS. (He was one of the lucky ones who recovered to more or less 100% after a few years.) When I read his book, he states in there that his experience working with hundreds of CFS sufferers was that although some were extremely careful with pacing, they would hit a ceiling they could not get over while others who were not as strict, some managed to improved gradually. He concluded that he must have some genetic quirk that ultimately helped him recover along with his resting and pacing. It sounded like he hardly took any supplements. So he saw pacing more as a method to control symptoms better and get a slightly better quality of life but not really as treatment.
That is really interesting Hope and sounds correct. Thankfully Bruce Campbell didn't conclude that because he was able to improve most or all the way that the rest of us, of course, should be able to. Do you recommend his course? Or his book?
 

Hope123

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That is really interesting Hope and sounds correct. Thankfully Bruce Campbell didn't conclude that because he was able to improve most or all the way that the rest of us, of course, should be able to. Do you recommend his course? Or his book?
Yes, I think the book and online course (both of which are reasonably priced) are good guides to how to pace. There's also free follow-up support groups on pacing. I believe they also have some funds for people who can't afford the cost. (note: I am not affiliated with this program other than having used it.)



http://www.cfidsselfhelp.org/

(Also, I don't think this info gets put out by even our own advocacy groups in the US enough. Perhaps they're afraid that people will be upset but the TRUTH is also important. Many studies show the rate of FULL recovery from CFS is less than 10%. There are some short studies which show a higher recovery rate but the methods are questionable and when people are followed out longer than a few years (which very few studies do), their pattern is more up and down and not 100% recovery.)
 
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I don't usually pay much attention to this lot - much of what they say is psycho-babble and they seem to have only a superficial understanding of this illness - but there's some perceptive observations here about stages of ME and pacing. See 'Art of pacing' section a little way down.

http://www.freedomfromme.co.uk/blog/

Jenny
I'm not able to find the article on Art of Pacing--can anyone help? All I see are video blogs on other subjects.
 

Lucinda

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I'm guessing the missing factor here is methylation. I've tried scads of supplements, some of which had some effect, some of which had no effect. What RichvanK and Fredddd say is that methylation is upstream of everything; without the methylation none of the supplements can be properly used, and the mitochondria can't function.
I did talk to the OHC over the phone and they said that they do do a simplified version of The Methylation Protocol.

I don't know any more than that though.