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

[justinreilly]

Major Change necessary at CAA

The following has been posted at the top of the Art of Pacing on the Association's website:
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. This article was brought to our attention by CFS patients posting in an open online forum as being a comprehensive overview of the topic of pacing. The views expressed in this article are the author's views alone, and no endorsement of this or any other approach to illness management is implied or conveyed by the CFIDS Association. There has been no therapy shown to be effective for every person with CFS, so readers are encouraged to consider their own health status and tolerance for medical and supportive therapies before making changes that could have positive, negative or mixed results. Finally, there is no relationship, commercial or otherwise, between the Optimum Health Clinic and the CFIDS Association.

I wanted to barf when I read this disclaimer and I'm a lawyer so you know it's bad.
This is like being a nutritionist and saying to a sick person that "different foods affect different people differently so they should read about nutrition" then serving someone a healthful organic salad with only a moderate amount of rat poison added.
"Well we gave a disclaimer and included healthful vegetables in the salad and don't have the money to hire someone competent enough to know not to add rat poison, so stop bothering us."

I agree with Dr. Yes and others that CAA should not publish anything before reading it; if they do not have the staff to read things then don't publish it; that when printing things about CBT, GET and the like it should assume it will be read by new or uniformed patients and health care providers and therefore state that GET can be very harmful to many patients, that CBT and GET as practiced in the UK is wrong and harmful, etc.

If CAA is not interested in advocating for us or in educating everyone then don't do it. Just be a research organization. If you do advocacy and education in a really bad way this is worse than not doing it at all. This is why we have the 'good samaritan' rule in the law. If someone is drowning at the beach, you don't have a legal duty to swim out there and save her. But if you yell out "I'm a lifeguard! I'll handle this!" and you swim out there, you are required by law to make a reasonable attempt at saving the person. You can't just swim out there and not try to help her or make a half-hearted effort, because the fact that you declared yourself to be competent and handling the situation discourages others from swimming out there and actually saving her. CAA is leaving us to drown.

As others have said, this is not a little oversight. This is consistent with all the other harmful misinformation put out there by CAA. Honestly, the fact that Kim McCleary is in Washington today does not make me conclude: "Oh well, she's in Washington today so CAA has done an effective job at advocacy and education." I find the fact that we are where we are politically, socially and medically speaks for itself (Res Ipsa Loquitor): CAA is ineffective. But we don't just have this circumstantial evidence of our wretched circumstances to prove this; we have all the harmful misinformation on the CAA website staring us in the face: all the horrible SPARK materials. It's shameful. There's been enough talk. We're all tired of it. To paraphrase Hillary J.: it's bad enough when CDC, NIH and UK NHS sh*t on our heads and expect us to say "thank you for the hat" but it's exceptionally painful when our own patient organization does this to us.

There HAS to be SUBSTANTIAL CHANGE at CAA and it looks like our present directors and/or officers and staff will not do this. If this is the case they must be replaced with people who will do their jobs.:Retro smile::Retro smile:

 

[Lily]

Do you all REALLY think at least one of the 5 or 8 (can't remember how many are left) CAA staff didn't read that article before publishing it?????

 

[jspotila]

Update

Posted today with the March CFIDS Link:

A frequent discussion topic on our Facebook page and in other forums is the delicate balance between activity and rest. Weve 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. An article included in the March Link written by Alex Howard generated negative response to portions of its content, so we've replaced it with one from the Chronicle archives written by Bruce J. Campbell, PhD, "Managing Your Energy Envelope." If you've found a helpful article on the subject of pacing and energy management, please send it to us at cfidslink@cfids.org.

 

[justinreilly]

Great advice from Stanford: DO NOT Overexert!

*
Instructions for Stanford Chronic Fatigue Syndrome Patients
While in recovery, please do NOT overexert yourself

* A lot of our patients report that their level of functioning feels like a rollercoaster. This description shows that the patient is overdoing it, and we believe that this behavior may seriously jeopardize the patients potential for a full recovery. As soon as patients start to feel better, it is natural to want to increase their activity level; however, this is not advisable during the initial recovery process because it will likely lead to a crash.
* We hypothesize that these crashes, or episodes of heightened fatigue, may have a cumulative effect on a patients health, and may compromise the patients potential for a full recovery.
* Imagine that every time you crash, your immune system overreacts as a response (as CFS may be an autoimmune disorder). As a result, the immune system attacks your bodys own cells in the Central Nervous System (CNS). Once these cells are damaged they may never recover. Even in the best-case scenario, when the viruses have been successfully treated and kept at bay, the damage that has already been done to the CNS may never be repaired. This may prevent the patient from fully regaining his or her cognitive and physical capacities. Theoretically this is how overdoing it and the subsequent crashing which results may have a long-term negative effect on health.
* Each patient is unique and should develop a routine level of physical and cognitive functioning that is appropriate for him or her. Patients should feel like their functioning level is constant from day to day, so that they are not experiencing any crashes. We feel that only once patients have learned to function under their threshold for crashing have they optimized their treatment plan and their chances for a full recovery.

@CBS:
This is SO great. I enlarged it and printed it out and posted it on the wall next my desk. Thanks so much for posting this. Do you have a link to the original?

 

[justinreilly]

Posted today with the March CFIDS Link:

A frequent discussion topic on our Facebook page and in other forums is the delicate balance between activity and rest. 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. An article included in the March Link written by Alex Howard generated negative response to portions of its content, so we've replaced it with one from the Chronicle archives written by Bruce J. Campbell, PhD, "Managing Your Energy Envelope." If you've found a helpful article on the subject of pacing and energy management, please send it to us at cfidslink@cfids.org.

Thank you.

 

[jackie]

ok. now I go to bed.

thank you, all.

IMO...as difficult as this whole process was (for both sides!)...removing it was the RIGHT thing to do.

(I consider it one more step to true understanding. Doing the right thing - one step at a time...works!)

j

 

[oerganix]

I wanted to barf when I read this disclaimer and I'm a lawyer so you know it's bad.
This is like being a nutritionist and saying to a sick person that "different foods affect different people differently so they should read about nutrition" then serving someone a healthful organic salad with only a moderate amount of rat poison added.
"Well we gave a disclaimer and included healthful vegetables in the salad and don't have the money to hire someone competent enough to know not to add rat poison, so stop bothering us."

I agree with Dr. Yes and others that CAA should not publish anything before reading it; if they do not have the staff to read things then don't publish it; that when printing things about CBT, GET and the like it should assume it will be read by new or uniformed patients and health care providers and therefore state that GET can be very harmful to many patients, that CBT and GET as practiced in the UK is wrong and harmful, etc.

If CAA is not interested in advocating for us or in educating everyone then don't do it. Just be a research organization. If you do advocacy and education in a really bad way this is worse than not doing it at all. This is why we have the 'good samaritan' rule in the law. If someone is drowning at the beach, you don't have a legal duty to swim out there and save her. But if you yell out "I'm a lifeguard! I'll handle this!" and you swim out there, you are required by law to make a reasonable attempt at saving the person. You can't just swim out there and not try to help her or make a half-hearted effort, because the fact that you declared yourself to be competent and handling the situation discourages others from swimming out there and actually saving her. CAA is leaving us to drown.

As others have said, this is not a little oversight. This is consistent with all the other harmful misinformation put out there by CAA. Honestly, the fact that Kim McCleary is in Washington today does not make me conclude: "Oh well, she's in Washington today so CAA has done an effective job at advocacy and education." I find the fact that we are where we are politically, socially and medically speaks for itself (Res Ipsa Loquitor): CAA is ineffective. But we don't just have this circumstantial evidence of our wretched circumstances to prove this; we have all the harmful misinformation on the CAA website staring us in the face: all the horrible SPARK materials. It's shameful. There's been enough talk. We're all tired of it. To paraphrase Hillary J.: it's bad enough when CDC, NIH and UK NHS sh*t on our heads and expect us to say "thank you for the hat" but it's exceptionally painful when our own patient organization does this to us.

There HAS to be SUBSTANTIAL CHANGE at CAA and it looks like our present directors and/or officers and staff will not do this. If this is the case they must be replaced with people who will do their jobs.:Retro smile::Retro smile:

Oh, but Justin, SOME people with blood clotting problems might be helped by ingesting rat poison/coumadin...

NO. This kind of thing should not be appearing in the latest edition of the CAA newletter. It's puzzling, irritating and unacceptable. Barf is exactly the right word.

 

[Cort]

This is like being a nutritionist and saying to a sick person that "different foods affect different people differently so they should read about nutrition" then serving someone a healthful organic salad with only a moderate amount of rat poison added.
"Well we gave a disclaimer and included healthful vegetables in the salad and don't have the money to hire someone competent enough to know not to add rat poison, so stop bothering us."

I disagree completely with this statement. There's plenty of good stuff in that article. Are you saying that pacing and meditational techniques harm people? That the negative thoughts that are bound to come from the stress of having a chronic illness aren't harmful? That stress does not impact this illness? That stressful events don't impact your health? I'll bet they do and if they do then there are things in that paper that can be of help.

There are good things in this document and they work for me and they work for others. I know someone who's health has been substantially improved by EFT. I know people who have been substantially improved by LP and Amygdala Retraining. I know of people who's health has been substantially improved by Bruce Campbell's techniques involving pacing and stress management. Even if YOURS is not their illness their voices shouldn't be drowned out by others which is what is happening in this race to condemn. It may or may not work but its not rat poison.

I would note that Dr. Montoya's prescriptions are not necessarily at odds with the prescriptions on that website; they also state that there are times when you should not over do it - that if you do that you will damage your body. Somehow that's been missed in this desire to vent.

I think it would be NATURAL for some people with a long understanding chronic illness to UNDERDO at some point. But any seeming critique of the natural emotional consequences of having a chronic illness is met with scorn here.

 

[Cort]

So the CAA has removed that article from its website and replaced it with one by Bruce Campbell. Beware of digging into his work, though, he too believes that all stressors should be examined in CFS - including activity levels, emotional triggers and negative thoughts - as well a managing sleep, etc.

For me I think its a shame we couldn't have had a discussion about the pro's and cons of the work.

 

[leelaplay]

Posted today with the March CFIDS Link:

A frequent discussion topic on our Facebook page and in other forums is the delicate balance between activity and rest. Weve 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. An article included in the March Link written by Alex Howard generated negative response to portions of its content, so we've replaced it with one from the Chronicle archives written by Bruce J. Campbell, PhD, "Managing Your Energy Envelope." If you've found a helpful article on the subject of pacing and energy management, please send it to us at cfidslink@cfids.org.

Jennie,

Thank you so much for listening and keeping an open mind. I am extremely impressed by you. And today, by the CAA's open-mindedness as well, and ability to quickly correct, what I and others here perceive to be, an error.

islandfinn

 

[cfs since 1998]

Statements of fact that damage CAA's reputation (or anyone's) that can be proven false are considered libel and we are required to remove them. That takes time and moderators do not have time to police every post so again, PLEASE when you are sharing a negative opinion, make sure it is clearly stated as 'in my opinion'. If you believe a post has included false or libelous statements please report it to the moderators for review. This applies to people on all sides of this debate of course.

Wow.

If a patient advocacy organization is willing to sue its own patients that they are supposed to be advocating for, then the problem is much bigger than we all realize!

 

[jackie]

I.F. I went to the CAA website a few minutes ago...and said "thank you very much. I think it was the "right" thing to do" (or something to that effect).

Every word written or spoken, when it comes to this disease, must count now...imo.

And I will continue to question, ask for changes, and "thank" those responsible for making those changes/righting the wrongs...as long as I have a voice. Because I'm SURE "we" already have far too many - with NO voices left!

Today...it felt good to be heard.


j

 

[cfs since 1998]

How do you turn that into an endorsement of the Oxford definition? How do you become an 'Oxford apologist' by stating that? I don't see any encouragement there.[/I]

I never used the word endorsement or any of its derivatives nor did I use the word encourage or any of its derivatives. The answers to your questions were in my post but you cut those parts out. In short, Vernon defended ("well characterized", "accepted and widely used") and made excuses for ("but samples were collected before publication of...Fukuda...or Canadian") the use of Oxford, a definition that pretty much all of us find objectionable because it's bogus, but she only said it "may" be objectional--as in, to some people, but not the CAA.

http://dictionary.reference.com/browse/apologist
- a person who makes a defense in speech or writing of a belief, idea, etc.

http://dictionary.reference.com/browse/complacent
- pleased, esp. with oneself or one's merits, advantages, situation, etc., often without awareness of some potential danger or defect; self-satisfied
- Contented to a fault; self-satisfied and unconcerned

 

[justinreilly]

I disagree completely with this statement. There's plenty of good stuff in that article. Are you saying that pacing and meditational techniques harm people? That the negative thoughts that are bound to come from the stress of having a chronic illness aren't harmful? That stress does not impact this illness? That stressful events don't impact your health? I'll bet they do and if they do then there are things in that paper that can be of help.

There are good things in this document and they work for me and they work for others. I know someone who's health has been substantially improved by EFT. I know people who have been substantially improved by LP and Amygdala Retraining. I know of people who's health has been substantially improved by Bruce Campbell's techniques involving pacing and stress management. Even if YOURS is not their illness their voices shouldn't be drowned out by others which is what is happening in this race to condemn. It may or may not work but its not rat poison.

I would note that Dr. Montoya's prescriptions are not necessarily at odds with the prescriptions on that website; they also state that there are times when you should not over do it - that if you do that you will damage your body. Somehow that's been missed in this desire to vent.

I think it would be NATURAL for some people with a long understanding chronic illness to UNDERDO at some point. But any seeming critique of the natural emotional consequences of having a chronic illness is met with scorn here.

@Cort-
I think pacing, not overdoing it and meditation are the yummy organic greens in the salad. These are great ideas and I think they work for pw/ME. I agree that stress is detrimental. We all know that stressors (whether physical, emotional, mental) are harder for pw/ME to deal with and cause PEM. As others have said here, there is good info in there, it's just that if you put it up there on the CAA website and CFIDSlink without any provisos that GET can be very harmful and that CAA disagrees that taking supplements are a way to avoid responsible exercise and healing, etc. can mislead new or uninformed patients and doctors. There is poison mixed in there- in addition to the 'signs that we're not active enough' and the implication that if we are not healing then we are not being active enough that have been cited by many people, here is a little nugget of poison:

Understanding this means that patients address the cause of their illness at multiple levels or locations their psychology, relationships and socio-economic conditions.

This implies that the cause of ME is patients' "psychology, relationships and socio-economic conditions." Obviously, these can be causes in the sense that these factors influence health and can set one up for illness and exaccerbate existing illness, but they are not the major causes of the disease. As has been said by others, we can just read that and throw it aside and glean whatever we think is helpful, but a new or uninformed patient or doctor will not likely be able to do this and this will cause substantial harm to the patient and us in general. Putting this up on the website is inappropriate and I think we just disagree on this.

 

[CBS]

So the CAA has removed that article from its website and replaced it with one by Bruce Campbell. Beware of digging into his work, though, he too believes that all stressors should be examined in CFS - including activity levels, emotional triggers and negative thoughts - as well a managing sleep, etc.

For me I think its a shame we couldn't have had a discussion about the pro's and cons of the work.

Cort,

I think that a failure to continue a discussion of the merits and pitfalls of 'The Art of Pacing' (with the possibility of generating a more widely acceptable outline) would be a missed opportunity.

I'm a bit worn out at the moment (and so attempting to outline such an endevour this afternoon is a bit more than I can bite off at this moment) but if someone else doesn't do it first, I'd be happy to start such a thread some time over the weekend.

 

[justinreilly]

CFS is my Slave Name

I agree with others who said that CAA just putting up the Canadian ME/CFS Consensus definition article and dividing it up into sections would be much preferable to what is one the website now. This could be done by existing staff without any overtime. Then replace the links to CDC's materials and website with a link to Malcolm Hooper's "Magical Medicine" and we're mostly done! I would guess most people would gladly do without a couple of webinars or months of CFIDSLink if this were necessary to divert resources to this effort.
This baffles me: CAA's contract with CDC to "Spark Awareness" is done, so why does CAA continue to offer up CDC's nonsense as valid information? A start would be to simply call the disease ME, ME/CFIDS or at least CFIDS; it is the CFIDS Assn of America after all. I'm sure I'm not the first one to make this brilliant point. Or is there some hush hush contract where CAA is obligated to CDC to call the disease CFS through 2012? To paraphrase Hillary J. again- as M. Ali said "Don't call me 'Cassius Clay', that's my slave name", I say "Don't call M.E. 'CFS', that's my slave name."

 

[Hope123]

So the CAA has removed that article from its website and replaced it with one by Bruce Campbell. Beware of digging into his work, though, he too believes that all stressors should be examined in CFS - including activity levels, emotional triggers and negative thoughts - as well a managing sleep, etc.

For me I think its a shame we couldn't have had a discussion about the pro's and cons of the work.

My reading of Dr. Campbell's work: he never promises that people will automatically improve with his pacing ideas. In fact, he says that in his experience, the majority of people are able to feel better but hit a ceiling at some point beyond which they cannot go beyond no matter how well they follow his treatments. And this is despite him recovering 100% himself. This is a major difference.

 

[CBS]

New Thread - Advice on Pacing: What should it look like?

Advice on Pacing: What should it look like?

Alright, now I really do need to get some rest.

 

[Hope123]

Jspotila, thanks for removing the article.

I appreciate the CAA's recent efforts at surveying CFS sufferers and the research but as someone posted way earlier, there needs to be more communication between the research arm and the public relations arm.

Oddly enough, in my reading of the CFS research, Peter White and Simon Wesseley, both of whom are proponents of the psychological theory in CFS in the UK, have published interesting research about biomarkers in CFS. However, you do not see them talking about it much or emphasizing it in their encounters with the general media. Wonder why? Now, I don't put their motives in the same category as the CAA but the outcome appears to be similar.

The research that the CAA funds in Utah (the Lights) is very good; now take that info and apply it.

That is, you have your own proof showing the deleterious effects of exercise in CFS sufferers so shouldn't info on the site about exercise or activity (like this Howard fiasco) incorporate some warnings?

In your 2009 survey, 25% of the respondents thought infection was the main precipitant of their CFS (even more for those who counted more than one reason). Yet, the site still refers to the 1994 Fukuda definition which doesn't mention viral/ infectious onset at all. Some other parts of the site talk about this but it's not emphasized on the first page for "professionals."

In the survey, you have over 1000 respondents with the illness duration across age group averages from 6 - 20 years so this is somewhat at odds with your" professional" page saying the majority of sufferers improve within 5 years, although at least this statement was qualified. Sure, one could argue that only the sick might stay with the CAA over time with people who improve dropping out of the CAA or that people who are sicker might be more interested in the survey but the overall message is your supporters are not those who recovered within 5 years. Please listen to this group carefully.

Finally, in the 2003 CDC study of 3 yrs. follow-up is cited in a few sections with 57% of people saying they improved in that time. This is actually different from what the article says; in fact, the researchers did not ASK people if they were better. People were EXCLUDED out of the CFS definition if they no longer fit the 1994 criteria exactly. The authors actually acknowledged that many of these folks would likely still be considered to have CFS or sick by most docs in the community.

Why am I picking on these points? It's because I've been on the other side; medical texts and resources still hew to past studies that say the majority of CFS sufferers get better within a few years when the data are much more varied than that and the figures are much lower, especially for sporadic cases of CFS. The message given out on the site needs to be clear and consistent.

 

[kurt]

Wow.
If a patient advocacy organization is willing to sue its own patients that they are supposed to be advocating for, then the problem is much bigger than we all realize!

WOW, that is quite a leap cfs_since. I quoted a simple definition of libel because some comments made about CAA were false and potentially damaging, and that makes more work for moderators because we have to remove that if someone asks. Who said anything about someone suing patients? I did not. Please do not add inferences like that to my words.