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

[Orla]

Exercise and CME

Cort

What I've been trying to say is that this is not that Psych program

They promote CBT and graded exercise which is what the psychiatrists would do. They may not intend to support the psychiatric view of ME/CFS, they may not realise what they are doing (which I think is the most likely explanation) but they have adopting some of the philosophy of the psychiatric school. Some of the psychiatrists don't push very aggressive programmes now (in their own practices) because patients can't do them, so lack of an aggressive exercise approach doesn't necessarily serve as proof of something being totally at odds with the psychiatric view.

This whole emphasis on exercise programmes comes from the psychiatric school of thought, because they think we are exercise/activity phobic and need to be pushed to do more.

The stuff about activity avoidance is also coming from the psychiatric school of thought (and that is where they got it here, as I showed in my piece quite a few pages back on their reference for that comment).

There is no evidence that patients pathalogically avoid activity. This is a psychiatric myth. There is no evidence that exercise programmes diminish most symptoms or lead to overal functional improvement. There is evidence that exercise can be harmful.

The CME could just advocate Pacing as most of the British groups do (this would mean that if patients feel better they do more, but there is no pressure to increase activity, or pretence of exercise as treatment, as is palpable in this document)


Lets look at some of the sources for the CAA material:

For this sentence:

Graded exercise may include both anaerobic and aerobic activities and can be effective in improving function and decreasing fatigue

There is no evidence for the above statement. Their sources for this comment are both from the psychiatric school of thought (the first study was really a paced exercise programme, not GET, but they called it GET and that what it gets referred to as, so a bit of spin going on there):

Wallman, KE, Morton AR, Goodman C, Grove R, Guilfoyle AM. Randomized controlled trial of graded exercise in chronic fatigue syndrome. Med J Aust. 2004;180:444-448.

Fulcher KY, White PD. Randomised controlled trial of graded exercise in patients with the chronic fatigue syndrome. BMJ. 1997;314:1647-1652.

This quote from the CME:

CME
CBT has been shown to be effective in managing CFS in small, short-term trials

Effective is a gross over-statement. The source for this comment is

Deale A, Husain K, Chalder T, Wessely S. Long-term outcome of cognitive behavior therapy versus relaxation therapy for chronic fatigue syndrome: a 5-year follow-up study. Am J Psychiatry. 2001;158:2038-2042.

CME
CBT may help CFS patients develop constructive coping strategies, better manage symptoms, improve their level of function, and enhance their ability to perform activities of daily life

No evidence that it improves activity levels. And one of the sources for this comment:

Reid S, Chalder T, Cleare A, Hotopf M, Wessely S. Extracts from clinical evidence: chronic fatigue syndrome. BMJ. 2000;320:292-296.

If they are going to mention CBT (or GET) they should point out the serious flaws in the research, that it doesn't lead to increased activity levels, and that there have been many surveys showing adverse or no useful effect (and they should quote these).

Orla

 

[Dolphin]

look at our very own new me/cfs video. (wonderful vid, imo!) Look at all of "us" in that video. Some (not all of course...but some...standing in front of the golden gate bridge...standing at the ocean, sitting on a bench shyly smiling, trying to cuddle with the kids - i would look just like them if I'd included myself -and yet, I have great difficulty walking)....I KNOW that many of those folks most likely experience PEM...that there is a good chance that they are exercise intolerant (and that exercise/activity may have caused them significant set-backs/relapses). I KNOW this because i "talk" to them here....AND i ALSO experience pem and exercise intolerance.

BUT what do you think a doctor thinks when we are sitting in front of him in an office (how did we get to the office, anyway?)..and he has approximately 7 minutes (i think thats the recommended time for hmo patients to be seen these days)...and he has mountains of info he has had to try and process for his other patients as well as you (remember many wont have access to any doctor except a primary care...who may have had limited exposure to me/cfs - in fact you might be his only one!....isn't familiar with the terminolgy..."I've never heard of "PEM"..."can you spell Myalgic Encephalomyelitis for me? is THAT what you say you have now?)"....what he DOES know is that EXERCISE is considered PREVENTATIVE CARE to an hmo doctor. Period. End of story.

And he's going to listen to the protests of a patient who has been whining about an illness he can't even find on a damned test...who doesnt even look sick...with or without a cane? if i can make it into his office...why shouldn't he tell me to exercise...he doesn't have to live with me to see the after effects. Many docs have seen so much info filtering in about "CFS" for so many years...so much contradictory info - from an unofficial change in name (cf vs cfs vs cfids vs me/cfs etc etc etc)...to "causes" proven and dis-proven...to meds tried and given up on)...i serously wonder how many are even interested in being "educated" about something so easily (and conveniently) described as "mysterious"? most of us are lucky if we have a doctor who even listens to us now.

(one more example....when i asked about a spect - a neuro said he could not - would not spend his limited time and energy fighting with my ins. co for a test that someone "like me" didn't need. He said he'd fight for my right to a spect scan if and when i came back to him dragging my leg (as in a stroke!). Is a doc who thinks like THAT, very likely to take the time to READ this info...ESPECIALY if i recommend it? ESPECIALLY if I try to tell him that I'M one of the "ones" that are different - and cant do what HE wants me to do - regardless of a cautiously worded document...with mild recommendations?) This is the "reality" of the situation in my world, anyway - (i pray i'm one of the few routinely dealing with this - but i fear i'm not)................j imo

Good points, IMO. The invisible illness aspect I think especially plays into the idea that exercise might be useful.

 

[Orla]

Cort
The odd thing is that I don't even care about 'exercise programs'. I do my little exercise - my little walking every other day - it definitely does help - and then that's it. I don't think of 'exercise' as a treatment

But the doctors will, and this will only encourage them to think like this. Dr Yes wrote this good piece (in response to what you has said)

Dr Yes
While saying that, for example, 'vigorous' exercise is potentially harmful, and even subtler points, the CME at the same time recommends exercise as a functionally restorative therapy, suggests that patients may well not be doing enough activity, recommends graded activity or exercise, and recommends gradually increasing activity even for severely ill patients without the warning that for some gradual increase of any kind, or even unnecessary activity beyond what is physiologically monitored as appropriate, is contraindicated for many of these patients. Don't forget - for low functioning patients 'activity' means 'exercise'.

And you might feel you have the option of not caring about exercise programmes but many do not, including Dr Yes (and in practice, the promotion of exercise programmes as treatment diverts attention from biomedical research and treatments, so it effects everyone whether they are aware of it or not).

Orla

 

[Dolphin]

Perhaps it is mostly those with a bad experience who respond to surveys?

I am not saying that there are no bad doctors. There clearly are! I don't take my own experience to be the only valid one, but that seems to be what is happening on the other side of the argument. And let's look at this coolly for a moment. I saw a total of five doctors at the US air base. Here in the USA, I have seen my primary care physician (Internal Medicine), have been referred to another Internal Medicine physician who was doing Florinef trials, a cardiologist who checked my irregular heartbeat, a gastroenterologist who does my colonoscopies, and all four doctors at our practice's urgent care clinic. That's a total of thirteen doctors, not counting a couple I have seen in the ER or my daughter's doctor and one at A&E when I had a severe allergic reaction while in the UK. Have I really just been lucky that I didn't get a single one who viewed ME/CFS negatively? I did have an anaesthetist who said he doesn't know much about it but who took my word, but my experience has been fantastic and I find it hard to believe that I have just been fortunate enough to have seen the only dozen-and-a-half doctors in the USA and UK who at least understand this to be a physical disease. I mean, is that not highly unlikely? And isn't it likely that those who have had/are having a similarly good experience don't join ME groups or go on ME/CFS forums as much as those with bad experiences who feel they are not being heard?

It should not be forgotten that good and/or sympathetic doctors can become bad.

If doctors hear that graded exercise programs are the answer, what will they think of the patient who won't do them? I think they can rightly start wondering about the patient e.g. "are they getting too much secondary gain - are disability benefits helping them? Are they liking too much the free time they have off work or school? The extra attention they are getting?"

"Why should I go to much trouble for this patient when they won't even help themselves?"

"I definitely don't think giving them aids is the answer - we need to get them up moving"
"Inactivity is so bad - look at all these patients with heart attacks, diabetes, etc I have to deal with - it isn't in this patient's interest to end up like this."

"Those patient organisations and forums are probably filling them with bad information to rest and not exercise - I must make sure not to tell future patients about them or actively warn against them."

"I wonder have they developed a bit of a phobia about exercise? Maybe a psychologist or psychiatrist could help them with their issues - I don't really have the time."
etc.

One of the best known doctors for "fatigue problems" in Ireland (JF) went from being sympathetic to now talking about secondary gain, getting patients back to work as quickly as possible, etc. He mentions in the book his hero is a patient who goes to the gym no matter how they feel.
In the early 90s, he wrote useful articles about the importance of rest and pacing. Then he got convinced exercise was the answer and it's been pretty much down hill from there (even though he follows the research). Orla has done a detailed review of his book (second edition) which I hope she will post on the Internet some time. The book has been translated into numerous languages.

 

[jackie]

Hi Tom...This is my third reply to explain "poms" to you! i think the gods of Pomerania don't want me to tell the long and fascinating history of the breed - as my previous posts keep getting lost!

Pomeranians (relatives of the "Spitz" in Europe) were large (20-40#) nordic sled dogs that were bred down the the current 3-7 (ave)#, (one of mine is large at 11# - a puppy mill rescue), by queen Victoria in the 1800's. They're called Pomeranians because they originated between Eastern Germany and Western Poland in an area known as - Pomerania!

Although they've gotten a bad rap in the states as being yappy and hard to handle..mostly due to ignorant celebrities that treated them like "designer" dogs that could fit in purses....they are really a wonderful breed. Smart, brave (in fact, the one trait that the Queen and everyone else has failed to breed out, is that BIG DOG personality - at a perceived danger they will fight to the death (theirs, usually) not realizing their limitations.

They make great service dogs to the elderly and disabled, empathetic companions to the ill and are very adaptive - they can walk for miles if need be and yet are content to sit in bed (they self-exercise if given some space). They also make good herding dogs and more recently owners have been training them for agility - because they're very agile and FAST!

We've rescued ours (we only have two now but hope to have at least one more - although since they can live to 18 we need to do this soon as I'm running out of time!)..and i think they do better if kept with more than one dog. They have cheerful dispositions (as long as they aren't left alone too much - and deprived of human company).

They also shouldn't be left alone outside (even with their warm double coats) as they can easily become prey to Fox, Coyote, Eagles and other birds of prey (Owls can take 1-2# pups!) They have a typical Pom trait - a smile or grin!

These dogs do a lot based on primitive instincts that are still intact as they are a very old breed. Ours won't eat food unless it's in a bowl on a cloth - which they use to automatically neatly cover their food with, carefully uncovering small areas as they eat and quickly "covering" any leftovers! Pretty weird to watch...obviously a "memory" of life as a pack dog (most likely in the snow)

I'm very lucky to be able to have animals (i know that many others can't due to space constraints, allergies, severity of illness - i have help)...and i credit mine with lessening my natural crankiness. I'd be much more obnoxious without the poms...AND they have turned out to be the perfect fit for my limited lifestyle. In case you haven't seen them:

 

[gracenote]

jackie,

Your babies are so cute!

 

[jackie]

Thanks Gracenote! I know I'm flagrantly "hi-jacking" or "rabbit-trailing" or "off-topic-ing" (which i have a bad habit of doing!) but Tom DID ask about Poms - so what else could I do (but show them off! HA!)

Tomorrow I'm going to post a pic of that damn little squirrel banging her fists on my window! And Peacocks! I have Peacocks, too!

 

[starryeyes]

In the 3 to 5 minute appointments I get with my doctors I don't even want exercise to come up. But they usually recommend it in spite of everything I tell them about how I have to approach it. :worried:

When they bring it up I regale them with stories of how much I used to exercise and how I rode my mountain bike to the top of Mt. Diablo from the foothills on dirt paths.

Now my doctor says I should exercise right as he's walking out of my appts. so I can no longer remind him of how I used to and can't now and what the consequences are when I do. Why? Why? Why?

You know how some of us get so bad we can no longer read books? What if every time we saw our doctors they knew that and told us we should be reading books. Just start with a word a day, then build up to a sentence.. and so on.

I can just see us explaining how we used to be avid readers and read long novels and non-fiction as well. Maybe I should change that to long threads.

 

[MEKoan]

Jackie,
In the colonies - not this colony, the pacific colonies - Pom was a term used to disparage Brits; don't know why. So, Tom may be wondering why you seem to get all Australian shirty all of a sudden, out of the blue, every once in a while. Makes me laugh!

ETA I don't know if he's Irish or Anglo-Irish so can't say whether he takes any of this personally

 

[Dolphin]

Off-topic

Jackie,
In the colonies - not this colony, the pacific colonies - Pom was a term used to disparage Brits; don't know why. So, Tom may be wondering why you seem to get all Australian shirty all of a sudden, out of the blue, every once in a while. Makes me laugh!

ETA I don't know if he's Irish or Anglo-Irish so can't say whether he takes any of this personally

I'm plain old Irish. Can prove it if you hear me speak - I don't pronounce many "th"s! (actually some Irish do pronounce this sound properly).

Orla's first language is actually Irish (Gaelic) but I'm not fluent (but was pretty good at reading and aural comprehension so with more practice could probably get there eventually - everyone here studies it from 4-17/18 but some are better than others and some make more of an effort to learn. I am more fluent in French which I started aged 11 - Irish is quite a hard language to learn - but I also have 4 years of Latin which helps with written French).

Yes, one might wonder what was happening in jackie's house to the poor POMs!

Right now i'm watching a mama squirrel (she hangs out on my deck) standing at my living room glass doors, and banging on it with her tiny clawed hands...twitching her bushy tail in impatience. too cute! (she's ready for more of the food i give her every day).....(BUT...if she could see The Poms hiding just around the corner, staring at her in a hypnotic gaze, every hair on their Pom bodies standing on end!

 

[Dolphin]

Off-topic

Thanks jackie - very interesting, especially about the eating.

Pomeranians (relatives of the "Spitz" in Europe) were large (20-40#) nordic sled dogs that were bred down the the current 3-7 (ave)#, (one of mine is large at 11# - a puppy mill rescue), by queen Victoria in the 1800's. They're called Pomeranians because they originated between Eastern Germany and Western Poland in an area known as - Pomerania!

You forgot to say that they must have a taste for power - as in other places, it is usually the humans who get the name e.g. Bulgaria - Bulgarians, Algeria - Algerians. I think you'd better watch out there in California! :Retro wink:

Sorry to hear about the threat from birds of prey. I don't think there are many in Ireland. I keep hearing of programs here where they try to introduce back in eagles and the like and then they find lots of them dead (poisoned). It's either the farmers or maybe it's a Pomeranian hit-squad!? :Retro wink:

 

[kurt]

Anyone getting thread fatigue here?

This thread was definitely true to its 'Big Talk' title, this one is almost 1,500 posts now, this is the largest thread on the forum. I have not read through the entire thread but just sampled a few posts here and there and am wondering whether people think the topic deserves more discussion? Maybe someone can summarize the main argument, but from what I just saw going through this most members here agree that the CAA should revise its medical training materials to either remove or strenuously qualify all references to GET. Is that the gist of this? Do we really need another thousand posts to make that point to the CAA?

I am happy to close this thread if its time has come, due to 'thread fatigue'. And if members have other specific issues with CAA they can always start new threads in the future. How does that sound?

 

[justinreilly]

Drs. Bateman and Lapp are True Heros!

Oerganix,

Personally, I'm pleased to hear that everyone has agreed to back off with the heated rhetoric for a while. Personally, I stayed away from this thread after the first few hundred posts. I wasn't comfortable with the tone. I jumped back in when I saw what to me were very unfair attacks and innuendo directed at someone I know and respect (Dr. Bateman). She's not my doctor, I watched her in SLC for over a decade. I've attended numerous talks she's given. I've questioned her on some of the very issues she was being criticized for and I can say with all confidence that her personal understanding of the dangers of excessive activity are second to none (see my posts about her sister). No one without CFS has given more and no one is more open to learning from her patients.

It was at that point that I felt I couldn't let the innuendo stand unchallenged. This thread was starting to look like a mob with torches and pitch forks headed off the hang anyone and anything indiscriminately as I was reading comments that had no basis in reality (not referring here to anything about the danger of exercise).

I don't want to be a part of this thread any longer but there are members here that I don't trust and I don't feel like I can leave without leaving the door open to more unchallenged and unreasonable accusations leveled against people that I KNOW TO BE OTHER THAN THEY HAVE BEEN PORTRAYED AND TRUST AND HAVE VOLUNTEERED (WHAT PRECIOUS LITTLE ENERGY I DO HAVE) TO WORK WITH and not just because they are nice. And that pisses me off.

Personally, I view the attacks in this thread as even more of a threat to my own well being than exercise recommendations (I not going to exercise no matter what anyone says) as they endanger what I see as critical research and the willingness of a wider body of researchers to enter this cluster of subject.

For the CFS community, I see the dangers of exercise recommendation being of equal importance but not for me. Still the attacks and innuendo do nothing for us as a community

Maybe I'm beating a dead horse here, but... fwiw I don't remember seeing anything attacking Drs. Bateman or Lapp on this thread, merely the language used in the CME, which I think we all agree could use improvement. There was one query as to whether Dr. Bateman has attended the severely ill. I assume this was just an honest question from someone who didn't know anything about her other than having read a document of which she was a co-author (although I can't say for sure, of course).

Honestly, it seems like Cort keeps bringing up his unfounded view that I and others think that these doctors are against us or are not experts in ME. I don't think anyone implied this (other than perhaps, depending on the mindset of the author which we don't know for sure, in the comment I mentioned above).

As I have said before I have huge respect and thankfulness for these two doctors. They have done so much for us; they've treated us, stood up for us and sacrficed a lot for us! For example, Dr. Bateman's farewell letter to CFSAC was one of the best and most courageous pieces I've ever read by a doctor on ME. They are some of the best ME specialists in the world and true heros!

 

[MEKoan]

I'm plain old Irish. Can prove it if you hear me speak - I don't pronounce many "th"s! (actually some Irish do pronounce this sound properly).

Orla's first language is actually Irish (Gaelic) but I'm not fluent (but was pretty good at reading and aural comprehension so with more practice could probably get there eventually - everyone here studies it from 4-17/18 but some are better than others and some make more of an effort to learn. I am more fluent in French which I started aged 11 - Irish is quite a hard language to learn - but I also have 4 years of Latin which helps with written French).

Yes, one might wonder what was happening in jackie's house to the poor POMs!

Right now i'm watching a mama squirrel (she hangs out on my deck) standing at my living room glass doors, and banging on it with her tiny clawed hands...twitching her bushy tail in impatience. too cute! (she's ready for more of the food i give her every day).....(BUT...if she could see The Poms hiding just around the corner, staring at her in a hypnotic gaze, every hair on their Pom bodies standing on end!

I always imagine "Pommy b@st@rds" in these situations and it's hysterical!

I'm just plain Irish, too. My parents were Brennan and Murphy. I am, most likely, your cousin. I am, most likely, Orla's cousin, too. I am definitely Enya's cousin as my mother's maiden was Oona N Bhraonin. My mother spoke Gaelic to me when I was a child in typical immigrant fashion: when she wanted to say something she didn't want the neighbours to understand. I've forgotten most of it now but still remember how to say, "Shut the door, if you please." because I heard it so often in reference to my messy bedroom. She was born and raised in Cahirciveen and my dad in Rosslaire.

My parents had accents all of their lives and, given enough lubrication, I can fall into a pretty convincing brogue in the right company. I hope one day to do so in situ!

Look out for the Poms!

ETA Some of my best friends are Poms, no offence intended, and my stepson went to Oxford, pommy b@st@rd!

 

[Dolphin]

This thread was definitely true to its 'Big Talk' title, this one is almost 1,500 posts now, this is the largest thread on the forum. I have not read through the entire thread but just sampled a few posts here and there and am wondering whether people think the topic deserves more discussion? Maybe someone can summarize the main argument, but from what I just saw going through this most members here agree that the CAA should revise its medical training materials to either remove or strenuously qualify all references to GET. Is that the gist of this? Do we really need another thousand posts to make that point to the CAA?

I am happy to close this thread if its time has come, due to 'thread fatigue'. And if members have other specific issues with CAA they can always start new threads in the future. How does that sound?

I'm not sure I mind either way but if we're summarising, a point I'd make/add is that it would be good if, in education programs for doctors (and other health professionals) parts to do with management (and exercise, if it is mentioned) could be vetted by patients.
Or at least, if one puts a panel together, one should try to avoid a panel where all or a large majority are into suggesting exercise programs for CFS patients.
(Or maybe I'm only summarising the posts from a person from Ireland - but he's maybe been making a disproportionate amount of the posts! :Retro wink: ) But like you say, lots of people don't want exercise mentioned at all so perhaps such "safeguards" are less important in such circumstances (i.e. when it isn't mentioned).

 

[justinreilly]

Honestly I don't even know how to respond to some of your posts. . Argue if you wish about the pro's and con's of the CME but stating that the CAA is an 'incompetent amateur' and Dr. Bateman is an 'incompetent amateur' and that Dr. Lapp is an 'incompetent amateur' - since they wrote the CME - I don't whether to laugh or cry.

I don't think Drs. Bateman and Lapp are incompetent amateurs, quite the opposite.

All the info we have here is the text of this CME including the names of co-authors and the fact of publication by CAA. It is generally not a great document and has a lot of potential for improvement. There are a few specific statements in it that IMO never should have made it into the final draft, for which, IMO, CAA has ultimate responsibility as editors/ publishers. Statements such as the one referencing "kinesiophobia" and ones dissected by Orla in the post to which I was referring. For example:

"Some people with CFS inappropriately avoid all activity because personal experience has demonstrated a link between exertion and symptom severity.[69,70]"
http://cme.medscape.com/viewarticle/581527_8

The passage cites a study by Lloyd called "To exercise or not to exercise in chronic fatigue syndrome? No longer a question." (Andrew R Lloyd MJA 2004; 180 (9): 437-438) In case you're wondering, the answer is "to exercise." The whole paper is a reiteration of the Wessely school position, but, as Orla points out, the CME passage states an even more extreme position than the Lloyd paper.

My point in this post was not to focus specifically on this quote, but to express my opinions that CAA, as an organization, often acts amateurishly and incompetently; that this must change; that there is no excuse for not submitting its publications for review by expert volunteers.

Their raison d'etre is representing us. I think we all agree having CAA documents reviewed by such experts as Tom K., Orla, Gerwyn, CBS and others from PR would result in more accuracy and representation of patients. It seems their historical unspoken position was they don't incorporate patient input into their publications. I'm frustrated by this.

 

[justinreilly]

Tom and Orla,

I would tell you I'm Irish but it's obvious from my name and I've been told by Irish not to tell them because "i'm Irish too" is always the first thing out of any American's mouth. :Retro smile:

 

[kurt]

I'm not sure I mind either way but if we're summarising, a point I'd make/add is that it would be good if, in education programs for doctors (and other health professionals) parts to do with management (and exercise, if it is mentioned) could be vetted by patients.
Or at least, if one puts a panel together, one should try to avoid a panel where all or a large majority are into suggesting exercise programs for CFS patients.
(Or maybe I'm only summarising the posts from a person from Ireland - but he's maybe been making a disproportionate amount of the posts! :Retro wink: ) But like you say, lots of people don't want exercise mentioned at all so perhaps such "safeguards" are less important in such circumstances (i.e. when it isn't mentioned).

Yes, this seems to be a point several people are making here.

I believe the CAA has CFS patients as board members so suspect their materials are reviewed by some CFS patients, but maybe they could have a formal 'expert patient' review panel. This is a common practice in high-stakes course development.

 

[Dolphin]

Yes, this seems to be a point several people are making here.

I believe the CAA has CFS patients as board members so suspect their materials are reviewed by some CFS patients, but maybe they could have a formal 'expert patient' review panel. This is a common practice in high-stakes course development.

Ok (have to admit I don't know what a "high stakes course" means exactly). It probably would be good if they had one or more individuals who know that there is published literature supporting pacing, envelope theory, etc - writing a course may be a bit like writing a research paper so you need some people who know the literature. Everyone doesn't of course as a course wouldn't have to be as dense as a research paper. Although some sorts of courses need more references than others. (I think Leonard Jason should be on US panels where possible - and he knows the literature).

 

[leelaplay]

This thread was definitely true to its 'Big Talk' title, this one is almost 1,500 posts now, this is the largest thread on the forum. I have not read through the entire thread but just sampled a few posts here and there and am wondering whether people think the topic deserves more discussion? Maybe someone can summarize the main argument, but from what I just saw going through this most members here agree that the CAA should revise its medical training materials to either remove or strenuously qualify all references to GET. Is that the gist of this? Do we really need another thousand posts to make that point to the CAA?

I am happy to close this thread if its time has come, due to 'thread fatigue'. And if members have other specific issues with CAA they can always start new threads in the future. How does that sound?

Hi Kurt,

I think if there were thread fatigue, then we wouldn't be here and you wouldn't be asking any questions - the thread would have died a natural death. Instead:

Oct 26 2009 was the first post
Mar 19 2010 was the 500th
Apr 8 2010 was the 1,000th
Apr 20 2010 think this is approaching the 1,500th

so that's almost 500 posts in the last 12 days versus
500 in the previous 20 days,
500 in the first 5 months

THere have been over 43,200 views of the thread, and I believe that it was about 3 days ago that there was under 40,000 views so over 3,000 views in 3 days.

So - I don't see signs of thread fatigue; instead I see increased interest.

I agree the thread is unwieldly. But I do not see that as any reason to close a thread. Threads close themselves when they run out of gas. The fact is that people continue to contribute posts here, rather than starting new threads on specific sub-issues, and others continue view. Both of these indicate that the topic is not fatigued.

The topic is the CAA. I don't see only one arguement here that can be easily summarized. Many people have spent a lot of their precious energy giving their opinions on what they feel the CAA is doing well and what needs to be improved, as well as areas for growth.

Personally, I haven't been able to read a lot of this thread although I care greatly about the topic, because I'm still having difficulty processing complex and/or lengthy text, and I'm overly-sensitive about what I perceive, probably incorrectly, as not getting along at times (I'm an emotional wimp with disagreement; I want everyone to play nice).

However, IMHO, I see no justification for closing the thread down.

I love what Kim is doing separating out the key points made in this thread on exercise and would be doing something similar on one of the many other topics that are important for us covered here if I were up to it.

if:Retro smile:

ETA: I missed the discussions in the last few posts while I was working on this. Too tired to respond to the ideas presented any more than saying the idea of the CAA getting an informed, perhaps somewhat independent, patient panel to work with them and vet materials sounds fantastic.