CAA recommends, to me, questionable article on pacing. March 2010

[Gerwyn]

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[leelaplay]

Hi all,

I have been thinking that maybe we need to split this thread. The CAA has withdrawn the offending article, any many kudos to them for their quick response in my mind.

But, there is on-going discussion on the dangers/merit of the Howard article on pacing and whole approach to treatment.

What do you think about asking the mods to start a new thread, starting after the CAA withdrew the article and we said thanks, to continue this discussion? And what should we name it if we go that route?

 

[Dreambirdie]

Wow! What a passionate discussion this turned out to be! I've been nursing myself back from a big setback, so I had no idea all that was up while I was attending to my recovery.

My (perhaps overly simplistic) thought about this is why couldn't this article have been titled or reframed as "Psychological tools/coping techniques for high functioning CFS patients." Instead of being referred to as "pacing" wouldn't "coping" have been a less provocative, and maybe more accurate, choice of words? And couldn't there have been a disclaimer at the beginning to point out that these techniques do not apply to those who are severely ill from CFS?-- with an adjunct article that pointed out JUST HOW severely ill some CFS patients are.

I'm seeing both sides of the argument here. I definitely think severely ill CFS patients need much better advocacy than they receive, and this "pacing" article dismisses and denies the severity of illness that CFS can manifest as for so many of us. CAA should definitely speak out with a louder voice for the weakest and most debilitated among us--it's the humane and compassionate thing to do.

But also, at the same time, like Cort and others I know, I have relied on a number of psychological tools and coping strategies (from meditation to breathing techniques to art and expressive therapies) to get me through some of the worst grueling setbacks in my 32 year long ordeal with CFS. I don't think I would have survived this illness emotionally and persevered through all that I did, had I relied on medical answers... as there were none to be had back in 1977, when I first became ill. And there was also NO CFS community, NO advocacy of any kind, and definitely no computer forums. So we have come a long long way.

I'm relieved at this point (more than 30 years later) to have a forum like this, where no stone is left unturned in regard to the "good fight" we are all fighting... for ourselves and for each other.

Thank you everyone for this powerful debate... and thanks IF!--for your initial post.

 

[leelaplay]

Wow! What a passionate discussion this turned out to be!
<snip>

I'm relieved at this point (more than 30 years later) to have a forum like this, where no stone is left unturned in regard to the "good fight" we are all fighting... for ourselves and for each other.

Thank you everyone for this powerful debate... and thanks IF!--for your initial post.

Hi DB - my pleasure. So good to have you back!:victory:

I don't think anyone was arguing against the value of pacing or of relaxational or coping strategies.

The main problems were that it directly said or strongly implied that

a) everyone recovers
b) pacing and attitude/belief are the main tools to recovery
c) if one does not recover, it is because one did not pace or have the right beliefs
d) ME/CFS is a psychological disorder, not a biomedical disease

This is what everyone objected to.

If the psychological and coping strategies/tools had been presented as that, with the info that CFS is a biomedical disease, most never recover, over-exertion can be dangerous.........................., then great. But instead, the good stuff was tied to some very dangerous stuff.

 

[Dreambirdie]

Thanks IF, I got that part. And I'm happy we got the CAA to withdraw the article.

 

[Cort]

I wonder if that group is scanning this conversation: I wouldn't be surprised if they have. There are alot of good suggestions here. I wonder if we'll see some changes in that article?

 

[leelaplay]

For those of you who didn't email the CAA complaining about the article, I'd like to let you know that they emailed me, and I assume everyone who emailed, saying that they'd retracted the article.

Again, I am very impressed with how they handled this. (yes - I know - in a perfect world it would have never been posted, but mistakes happen, and they listened and reacted quickly)

Here's the email I got(my spacing and bolds):

Thank you for your feedback regarding the recent article “The Act of Pacing” in our March issue of CFIDSLink. We receive many questions each week from people with CFS who have difficulty managing the energy and activity limitations imposed by CFS, largely due to the characteristic symptom of post-exertional malaise/fatigue/relapse. We’ve published several articles about this topic over the years because of the challenge that many people with CFS experience in trying to avoid pushing and crashing through symptom relapses.

The article included in the March Link by Alex Howard was originally identified to us by people posting on the Forum. However, the negative response to portions of its content, led us to replace it with an article from the Chronicle archives written by Bruce J. Campbell, PhD, "Managing Your Energy Envelope." (http://www.cfids.org/cfidslink/2009/080505.pdf)

If you've found a helpful article on the subject of pacing and energy management, please send it to us at cfidslink@cfids.org.


Sincerely,

Kim

Kim Almond
Operations & Network Administrator
The CFIDS Association of America
working to make CFS widely understood, diagnosable, curable and preventable

 

[Dreambirdie]

Again, I am very impressed with how they handled this. (yes - I know - in a perfect world it would have never been posted, but mistakes happen, and they listened and reacted quickly)

Me too, IF. It's a relief to know they listened, cared and responded.

We are all together in this CFS mess.
Even when we disagree about the details, it's good to know we can hash through it and make progress.

 

[starryeyes]

IMO

I remember reading about the Energy Envelope from Bruce Campbell awhile back and I thought it was right on. I think that's the best article I've ever seen on pacing. Good job CAA! :Retro smile:

 

[Sue C]

hi...just catching up on this thread. It is with emotion that I respond, tears that I can see how strong we are in our truth. Many years, I pushed myself beyond physical and mental limits trying to prove that I wanted to get well. If damage was done, it was due to being encouraged to pursue detrimental treatments. Loss has a way of doing that to anyone, whether loss of a person, career, home, etc. we greive for what was and what could be.
Its difficult to stay within windows of activity without overexertion..I would welcome the discussion opened to how others pace their activities. And how one copes during relapse, some not having family or friends to help.
The last few years since death of my parents, it is sometimes overwhelming to feel so isolated and misunderstood by strangers. And living with the fear of possible loss of independence due to that misguided judgement of so called medical professionals not believing in existence let alone severity of illness. We do need a group or association to represent us as advocate and recognize that those living years of their lives without improvement, with declining energy to represent oneself. This was a good practice run, in my opinion, to exhibit how strong and cohesive a response to negative or incorrect info can happen and bring change. I believe that I am a spiritual being experiencing life as a human being and that perspective has been a lifesaver for me. Hope that my run on sentences don't bother. Sue C

 

[starryeyes]

(((Sue)))

I understand how you feel and I'm very sorry that both of your parents have died. Did you see the thread that CBS started about pacing?

Thanks for sharing your story. We believe you and understand you here.

tee

 

[Sue C]

thanks Tee and a hug back to you...will check CBD thread Sue C