Time for the Big Talk. How's the CAA doing?

[justinreilly]

Change or Leave!

CAA directors and officers are legally required to immediately commit to patient-demanded changes or to resign. As I have said before, CAA directors and officers have the legal fiduciary duty of utmost loyalty to patients. It is very clear to me, and I believe many of the patients who have posted on this thread, that they have for years consistently, unlawfully violated this bedrock duty.

CAA directors and officers and CAA itself are operating unlawfully. Change or Leave!

Edit: This comment was submitted for moderation, so I wanted to clarify the basis of my opinion. I am a lawyer. This is my actual good-faith opinion based on what I know of the facts and general knowledge of corporate law as a former corporate litigator and student of corporate law.

[Edit: "many" in last sentence of first paragraph changed from "almost all']

 

[dannybex]

I don't accept that pacing is in the same league as exercise with regard to harm. I'm not sure there really is much harm associated with pacing at all - the surveys don't find it e.g. it was the safest in the CAA survey (follow link in my sig) - 1 person out of 601 people said it was harmful (0.2%).

I agree with you Tom. I wasn't trying to equate pacing with exercise...

 

[gracenote]

CAA directors and officers are legally required to immediately commit to patient-demanded changes or to resign. As I have said before, CAA directors and officers have the legal fiduciary duty of utmost loyalty to patients. It is very clear to me, and I believe almost all of the patients who have posted on this thread, that they have for years consistently, unlawfully violated this bedrock duty.

CAA directors and officers and CAA itself are operating unlawfully. Change or Leave!

justinreilly,

I just need to say that you are not speaking for me.

 

[Dolphin]

Sorry, tomk. See if this works. I'll go change the other.

View attachment 2171

Yes, works fine now.
Interesting paper. If you read the paper, it isn't hard to understand the tables.
I would have liked them to use actometers at the end rather than just at the start. But it is good they did measure lots of other items and symptoms - a lot of papers in the field just measure fatigue and the SF-36 physical functioning scale but not various symptoms, for example. If you look at Table 5, COG/pacing did better than CBT on all eight symptoms.

 

[dannybex]

CAA directors and officers are legally required to immediately commit to patient-demanded changes or to resign.

CAA directors and officers and CAA itself are operating unlawfully. Change or Leave!

Hi Justin,

I certainly understand your passion on this issue, but with millions of patients in the USA alone, how could the CAA -- or any group -- possibly "immediately commit to patient-demanded changes"? Wouldn't we end up having a new board every few hours?

I don't mean to be glib...it's a serious question.

d.

 

[txfriend]

justinreilly, I agree 100% with you...if the CAA does not come out with
all guns blazing at the next CFSAC meeting, we should all agree to
ask them to resign and let it begin anew with another national org.
I cannot wait until May 10th! There had better be not only words, but
decisive action directed at Congress themselves...i.e., 'this is a
Congressionally mandated committee, and we hereby request that
the Sec., DHHS respond to this committee's numerous recommendations
forthwith, or we shall request a Congressional Inquiry immediately."

 

[justinreilly]

Cort said
<It seems to me that in any group of people some people will overdo and some people with underdo.>

This may apply to normal people as they have as much exercise capability available as they need to live. You are the first person with ME/CFS I have ever heard, in forty years, say they have done too little. I honestly don't know what you mean when you say you have occasionally under did it. Do you mean you made yourself ill by lazing about or do you mean you had some spare capacity for exercise which you did not fill?

For most of us, the things we have to do every day to live require more than we can easily give. This applies to the less affected too because they are often struggling to stay in employment or have commitments that the severely affected have had to give up.

We do not decide to spend a Sunday afternoon lazing on the couch instead of doing the washing, we collapse because we our bodies give out. An outside observer sees someone lying down and thinks chivvying them to exercise is the answer. It will only break our bodies more.

Not having the choice to do too little could be a definition of our disease. Like many people if I did not do more than my body feels comfortable with I would die.

To assume that there must be people out there not doing enough exercise is unwarranted and dangerous. Just evoking "there must be some" is not good enough when exercise is so dangerous for us.

Mithriel

I totally agree with Mithriel.

 

[justinreilly]

justinreilly,

I just need to say that you are not speaking for me.

Thank you for clarification. I have edited my post from "almost all patients on this thread" to "many patients on this thread."

 

[Roy S]

I haven't caught up with this thread (except for this last page) since my last post about the threat of shutting it down. Maybe we should try lightening up for a while? I don't want this to get shut down and get buried in the archives. These subjects are too important.

 

[Dolphin]

For useful critiques of GET and CBT based on GET, I think an excellence resource is the website of Dr. Ellen M. Goudsmit C.Psychol. FBPsS Health Psychologist (HPC Registered) (to give her her full title - FBPsS=Fellow British Psychological Society):
http://freespace.virgin.net/david.axford/me/me.htm http://freespace.virgin.net/david.axford/melist.htm

She is a patient as well as a psychologist. I have learned a lot from her articles and interacting with her on discussion lists for the last 10 years.

 

[justinreilly]

Hi Justin,

I certainly understand your passion on this issue, but with millions of patients in the USA alone, how could the CAA -- or any group -- possibly "immediately commit to patient-demanded changes or to resign"? Wouldn't we end up having a new board every few hours?

I don't mean to be glib...it's a serious question.

d.

Hi Danny,

Good question. I don't mean that everytime someone posts a criticism of CAA on the internet or sends them an email that the Board should resign.

I just mean that it is clear to me, and I believe most people, that CAA has consistently been doing things against the interests of patients for many years. This has been pointed out innumerable times to CAA over the years with very little response, much less change.

This is a problem that requires an immediate response. When I say 'immediate' I mean 'immediate' in 'corporation-years' which is something longer, say two or three weeks, in 'person-years.'

CAA is fundamentally broken. Corporate law requires the board to fix CAA, ie to require the officers to change to fully act in the interests of patients. The fact that CAA has avoided the necessary commitment to change for years is not a reason that it should continue to delay. Every day that goes by without adequate help for pwME is 46,000 person-years of suffering.

Does this adequately address your question?

 

[dannybex]

Yup...makes more sense now. Thanks Justin.

 

[justinreilly]

I haven't caught up with this thread (except for this last page) since my last post about the threat of shutting it down. Maybe we should try lightening up for a while? I don't want this to get shut down and get buried in the archives. These subjects are too important.

I defer to your advice as it comes from someone who has done so much good for us without adequate reward.

 

[Dolphin]

I haven't caught up with this thread (except for this last page) since my last post about the threat of shutting it down. Maybe we should try lightening up for a while? I don't want this to get shut down and get buried in the archives. These subjects are too important.

Maybe we could have a quiz on the posts e.g. Who said "...." in message X. Not knowing it should lead to immediate expulsion. That'd get rid of any slackers who have only read, say, 600 posts. :Retro wink:

 

[justinreilly]

I agree completely and I think this is actually a major flaw in the document. While it does state that CFS patients should not engage in activities that exacerbate their symptoms - it does state that indirectly - I think it should be much more explicit about the fact that most people are overdoing it anyway. There's a HUGE pull even for people who are not working to overdo it. Just look at the energy demands of cleaning the house for a really ill patient. This is part of the energy management section but I agree it should be made much more explicit.

Yes. Thank you, Cort.

 

[justinreilly]

...
As someone who does go pretty frequently to doctors/specialists as well as referrals to labs/testing facilities etc....i can tell you that most non-pwcs and professionals are NOT listening or even attempting to understand the dangers.

When I was sent to a cardiology lab and ordered to do a treadmill-stress test/ct heart scan, I painstakingly photocopied every study I could find warning of the risks of this. I carefuly explained the studies/info...and three technitions smiled, pointedly threw my papers in the trash in front of me...and told me to just try harder to do the test - that I'd be fine, I was just de-conditioned. (fortunately for me my HR skyrocketed to 180, within 2 minutes...and they stopped the test - but two minutes was all it took!)

When my I.D. doc found out he had a FIT, saying this was one of the WORST things that could have been done to me....and was justifiably worried about the long-term effects. Needless to say, I relapsed badly (many months)...

Shocking... yet shockingly unshocking that a pwME was treated so barbarously by doctors.

 

[justinreilly]

Maybe we could have a quiz on the posts e.g. Who said "...." in message X. Not knowing it should lead to immediate expulsion. That'd get rid of any slackers who have only read, say, 600 posts. :Retro wink:

The answer is 'justinreilly.'

 

[gracenote]

Maybe we could have a quiz on the posts e.g. Who said "...." in message X. Not knowing it should lead to immediate expulsion. That'd get rid of any slackers who have only read, say, 600 posts. :Retro wink:

Do you make exceptions, tomk, for cognitive difficulties? I have read every single one of the 1,384 posts (is this something I should be proud to confess or be embarrassed about?) and I remember . . . a . . . a . . . what was the question?

 

[justinreilly]

IMHO,

PACING: Great! We need that to prevent crashes and disease progression, and to allow our bodies the best shot possible for recovery. We need to educate new people with this information to spare them the hell of disease progression. Pacing should be a top priority in any treatment plan for ME/CFS.

GET: Dangerous in any form for most of us. Therefore, tt should not be part of any educational or recommended information for the treatment of ME/CFS. In fact, it should only be mentioned as a bold lettered WARNING against it in any form. There should be no arguments about what forms, levels, periods of exertion etc, may or may not be acceptable.....None of it is acceptable! The patient should be educated and supported to learn to function within their energy envelope (pacing), and trusted they will expand that at their own pace as their health allows, and not the other way around because for most of us, the other way around is deadly.

It's not at all my personal experience, or that of countless others......but even if there are milder level PWC's who may benefit from GET, I would still say that GET should not be part of any general recommendations until more is known about how those people can be accurately identified. It's not good enough that a few doctors currently have some understanding of those differences and respect it.....we need the science behind it. Trial and error is not an option with something so dangerous. Until there is a definitive test that determines who will and who will not benefit from GET, it should not be considered, supported, or suggested in any manner as being helpful for ME/CFS.

[emphasis added]

Don't play with fire (GET).

 

[justinreilly]

I know where you're coming from, Jackie. I think any doctor who took that course would recognize, however, that the inability to engage in aerobic exercise is a key facet of CFS.

Here's a section from 'Managing Activity' where they clearly state how limited the activity levels of many patients are. I think this would be a real eye opener for your doctors.

<Nancy may also have to learn how to delegate work, defer unnecessary activities, or delay activities until a "better day." Sometimes shifting activity from light or moderate tasks (vacuuming) to sedentary or light tasks (peeling vegetables) may help. Most patients will report a small daily "window" of time when they feel best, which should be reserved for more essential, difficult, or cognitive tasks.>

Note that they address the problem of 'school phobia' as well

<CFS occurs in children and adolescents, though less frequently in children younger than 11 years.[8,20] Pediatric CFS often leads to frequent school absences, a decline in academic performance, and a severe decrease in extracurricular activities. It is not uncommon for pediatric CFS to be misdiagnosed as school phobia, anxiety disorder or depression, or as a manifestation of severe family dysfunction, leading to underdiagnosis of the illness and inappropriate treatment.>

Where else have you seen that spelled out to doctors before?

Justin wants to boycott the CAA but I think he would appreciate the fact that the course clearly states that the postexertional malaise in this illness is not due to depression and that it, in fact, differentiates CFS patients from depressed patients

<While certain symptoms of depression (fatigue, achiness, and sleep disturbance) overlap with those of CFS, the difference lies in the severity of symptoms. In this case, the fatigue is so severe that she is unable to maintain daily activities at home or at work, and if she pushes herself, she is markedly more fatigued for a day or two afterward. This postexertional malaise is typical of CFS, but it is infrequently seen in other disorders. Other clues to CFS are the rapid onset following a flu- or viral-like illness and the absence of depression prior to the illness. Additionally, depression will improve with counseling or antidepressants, but CFS is chronic; and while depression is usually responsive to traditional exercise therapy, CFS is usually worsened by that level of exertion. Lastly, patients with depression are hopeless and helpless, while CFS patients tend to be proactive and hopeful.>

I do appreciate it.* Good passages and points.

*I hate to quibble with a detail of this nice post by Cort and good CME passages. I just want to note for the record that the statement that 'traditional exercise therapy' 'usually' worsens 'CFS' is too conservative.