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

[jackie]

I dont know about any of you...but this "period of time" we are living in now....is the FIRST time (in all the years of my illness) that I have had relatively easy and quick access to the various "Educational Materials" (from many sources) that were probably a driving force behind many of the worst aspects of any mistreatment/ignorance/apathy I was subjected to, by my Health Care Professionals (in some areas I received adequate care...usually because I learned what I could, bit by bit, and fought for it).

With the formation of PR I can now read and evaluate and, if necessary, find (what I determine for myself) are faults with the outdated and unproven and at times manipulative and dangerous information.

Cort has opened up one big wonderful and glorious can of worms here...and I am grateful!. Now maybe we (and this disease) can finally "get" somewhere! But what a fight it's going to be!

I'm not going to shut up or accept or look the other way or assume that I don't know my own disease or body BETTER than someone conducting a Study with %'s, or ANY Doctor or ANY Research Group or ANY Advocacy Group...knows! I feel that I, and the countless other PWC's living a half-life with me/cfs KNOW MORE...in terms of treatment for daily living! (and we know when advice for us is just plain wrong and we know when we are being hood-winked, too!) I don't think I'm alone in feeling this way...not judging by the hundreds of comments and responses on this thread!

Am I sensing a gigantic, collective bellow of rage and protest building up, rumbling and growing stronger and ready to be joined with the many weary and sadly faint ones from other Countries even MORE disenfranchised....the din soon to be heard around the world? One great big SCREAM! I certainly hope so.

I call for no more lies, no more subterfuge, no more cover-ups, no more double-speak from the CDC or anywhere else.

I'm stunned that the CDC has not responded to the request from the CAA to remove their "name"...and I'm stunned that only the NAME was requested to be removed from what we believe to be the offending material. (lets not forget...Oslers web was written for a reason) j

 

[starryeyes]

Here's what Koan wrote back in December on The CAA Pamphlet to Educate Doctors thread:

I just wanted to say that everyone with ME/CFS owes it to themselves to find out all they can about Prof. White and the other players.

We live in a global village; insurance companies are international.

Chronic illness is expensive and, to many, distasteful which is why they would rather see us as having a moral failing than a physical one. "If I have to keep plodding through my exhausting, difficult life, why shouldn't you?!" This is human nature which is independent of geopolitical borders.

We are expensive and we are expendable; not a good combination.

Yes we are a global village now.

 

[starryeyes]

Jennie,

Thank you for clarifying the situation.

You wrote: The CDC CME is under CDC's control, and they have not responded to Ms. McCleary's request that her name be removed.

I don't get it. McCleary helped "write" (Copied and Pasted information) for both of these CME. They've done their damage and now she's trying to disassociate herself from them? Why isn't she working on correcting the misinformation in them instead?

I object to McCleary taking her name off of these CME at the CDC. She was directly involved in creating them. What's she trying to do? Fool people? Erase history? This is appalling!

 

[starryeyes]

Jackie wrote: I dont know about any of you...but this "period of time" we are living in now....is the FIRST time (in all the years of my illness) that I have had relatively easy and quick access to the various "Educational Materials" (from many sources) that were probably a driving force behind many of the worst aspects of any mistreatment/ignorance/apathy I was subjected to, by my Health Care Professionals

Yes! Yes! Yes! This is exactly my experience and thinking too. Thank goodness Stuart posted the CAA CME links on here. I remember feeling so overwhelmed when I clicked on them, it took me a couple of weeks or so to even look again. That's when I decided to just scrutinize the first link he gave and then I wrote my Review of it in The CAA Pamphlet to Educate Doctors thread.

Jackie wrote: I call for no more lies, no more subterfuge, no more cover-ups, no more double-speak from the CDC or anywhere else.

Yeah! I'm with you all the way!! :victory:

 

[starryeyes]

Remember these great disclaimers Rebecca came up with in The CAA Pamphlet to Educate Doctors thread on p. 18?

Rebecca wrote: If they're not going to stop distributing the pamphlet, they should insert a warning:

WARNING: Exercise in PWCs can cause adverse effects including, but not limited to, reduced capacity to perform daily activities, long-term cognitive impairment, and permanent decline in function.

Rebecca wrote: For its own legal protection, the CAA might seriously consider also stamping a disclaimer on every pamphlet it distributes to doctors:

DISCLAIMER: The CAA is not responsible for any adverse effects resulting from the behavioral and exercise programs endorsed by this pamphlet.

 

[starryeyes]

Thank you Maarten. We share the same dream.

 

[Wayne]

I Would Like to See a Calmer Tone

I think my experience is common to many of us. I have days when I am able to do much more. I can cook food to freeze for bad times or go out for the day. There is no gradual increase. The change is abrupt because what determines my activity level is the underlying disease process not any state of deconditioning or fear of exercise.

If the cause of our illness is found and a treatment given I will be able to do activities immediately. I might have to build up if I want to do exercise like running or swimming and I may never get full function after so many years of illness but I expect to be able to spend a day out of bed, to shower and to cook.

That is why all reference to activity improving our function must be removed from education materials. Our activity level is dictated by the underlying fault in our bodily system NOT the other way round. It is the psyches who have said this and there is no evidence for it whatsoever.

Mithriel

Hi Mithriel,

Your above articulate description almost perfectly matches my own experience and perspectives. It would seem we are very much on the same page in this regard. BTW, I also prepare and freeze food on days when I'm up to such activity (perhaps 5-10% of my days). It helps immensely to have prepared food in the freezer for the remaining 90% of my days when food preparation is much more difficult.

For myself, I believe my staying on alert to walk when I'm able to do so has helped me maintain a certain amount of conditioning. I fully realize this is somewhat of a "luxury", as I've had extended periods of time when I was simply not able to do this. I also fully realize that many with lower functionality than I have are not able to do so whatsoever.
............................................................

I have to say I find this thread to be fairly distressing to read. On one hand, it has some remarkable revelations that I've not been aware of, and I'm appreciating learning more about. I also appreciate the efforts that many of you are making to correct some important things that are detrimental to the ME/CFS community.

On the other hand, I struggle with the intensity (anger) in some of the posts. Being quite energetically sensitive, I feel fairly blown away by it. It seems that with Jennie graciously joining in the discussion, and seeming to offer a hand of cooperation, that a "calmer" atmosphere could begin to prevail.

I wonder if Jennie's generosity could be viewed as somewhat of a "turning point" in this discussion? When it was felt that the CAA was not listening, it seems many of the posts were quite adversarial. It now seems Jennie, as a CAA representative, is clearly indicating a willingness to listen. It seems like a real opportunity to shift the tone here from adversarial to cooperative.

I hope so, as I don't feel I can even continue to read unless things can calm down a bit. I'm guessing I'm not the only one. Dealing with anger just takes so much energy that many of us just don't have. I'm certainly not "demanding" such a shift; I can always go to less confrontational threads. But I would miss out on some very interesting things if I were to do so.

I don't mean to offend anybody. Just saying some things that are true for me.

Best Regards, Wayne

 

[Mithriel]

There is anger, Wayne, because we can't understand why something that patients know is damaging to us, leading to severe illness and disability, even death in some cases, is being recommended by a patient advocacy organization.

I am sorry it is upsetting you but how can we sit back and let doctors be told that this is a good way to treat patients?

If even one child ends up like Lynn Gilderdale by my silence how could I live with myself?



Mithriel

 

[MEKoan]

Hey Wayne,

This really isn't a thread for the faint of heart. Not that you are! Just that it isn't.

People are discussing things about which they have a lot of intense emotion. How could they not? I think, for the most part, people are being pretty self contained and very polite to Jennie. It's just not easy stuff to discuss.

If even one child ends up like Lynn Gilderdale by my silence how could I live with myself?

Truth out,

 

[Dreambirdie]

I have to say I find this thread to be fairly distressing to read. On one hand, it has some remarkable revelations that I've not been aware of, and I'm appreciating learning more about. I also appreciate the efforts that many of you are making to correct some important things that are detrimental to the ME/CFS community.

On the other hand, I struggle with the intensity (anger) in some of the posts.
Being quite energetically sensitive, I feel fairly blown away by it. It seems that with Jennie graciously joining in the discussion, and seeming to offer a hand of cooperation, that a "calmer" atmosphere could begin to prevail.

I'm guessing I'm not the only one. Dealing with anger just takes so much energy that many of us just don't have.

I don't mean to offend anybody. Just saying some things that are true for me.

Best Regards, Wayne

Thanks Wayne. Me too. Sometimes when I read these threads, all I can say is OUCH.

The argument (against CBT and GET) makes a lot of sense, but the feeling tone is often hard to take.

 

[Dolphin]

Hi Mithriel,

Your above articulate description almost perfectly matches my own experience and perspectives. It would seem we are very much on the same page in this regard. BTW, I also prepare and freeze food on days when I'm up to such activity (perhaps 5-10% of my days). It helps immensely to have prepared food in the freezer for the remaining 90% of my days when food preparation is much more difficult.

For myself, I believe my staying on alert to walk when I'm able to do so has helped me maintain a certain amount of conditioning. I fully realize this is somewhat of a "luxury", as I've had extended periods of time when I was simply not able to do this. I also fully realize that many with lower functionality than I have are not able to do so whatsoever.

The thing is that a review of three Dutch CBT studies where patients were encouraged to exercise with regular walks didn't find an increase in step counts (relative to the controls - both had a small increase on average). Similarly Friedberg has reported this (no increase in step counts) in small studies he has done - people were clearly having to drop other activities to go for walks.

If people want to make this choice to do “meaningless” exercise (i.e. exercise for exercise’s sake) that is fine. But it should be recognised for what it is. People with ME/CFS have limited energy and, in my opinion, there should not be an expectation on them to do “meaningless” exercise.

And it shouldn't be presented to professionals (and patients or indeed anybody else e.g. insurance companies) as a tool that has been shown to improve activity levels, pain, etc. when it hasn't been.

 

[Dr. Yes]

Hey Wayne,

This really isn't a thread for the faint of heart. Not that you are! Just that it isn't.

People are discussing things about which they have a lot of intense emotion. How could they not? I think, for the most part, people are being pretty self contained and very polite to Jennie. It's just not easy stuff to discuss.

Good points from the Wise Buddhist! This disease isn't for the faint of heart -- especially the more severely one is affected. Given the atrocious abuse and/or neglect suffered by many PWC, I think that the level of restraint in this thread has for the most part been amazing. I hope no one asks those who have experienced so much pain and neglect on an institutional level, or those who advocate for them, to control their anger and frustration more than they already are. If the tone of criticism is uncomfortable for anyone, I would recommend delving deeper into the issues and the discussions (many of which began on other threads), as there is a long history to these things that precedes Phoenix Rising. If the tone or criticisms cause stress for any individual - which happens often enough to me - I recommend not reading or taking a break (as I have on many occasions). For me the really uncomfortable tone has been in the angry responses directed at individuals who criticize the CAA, as I mentioned earlier and elsewhere -- though there have been overly inflammatory comments made by those with complaints about the CAA, some of which have since been deleted. It is important to note that the 'debate' here is usually only between Cort or Jennie and the rest of the posters, which is an odd situation to say the least.

Oh- I should also point out that there are at least two threads that were created for the discussion of issues about tone, etc of CAA thread debates, or in the forum in general. One (seldom used) is in 'Nuts and Bolts' and is called "CAA in Forum Debate" (etc); the other was started by CBS but I can't remember if he changed the title or not.

 

[Wayne]

I Just Like Things Calm

Mithriel, Koan, Dreambirdie, Tomk, Dr. Yes,

Thanks much for your responses. I appreciate them all. I think I need to clarify or re-emphasize a few of my thoughts.

Mithriel, again, I feel I'm in complete agreement with you! :Retro smile: I think what the CAA has been presenting should be challenged. And I admire that you feel passionately about trying to prevent even one person from being harmed by ill-conceived exercise recommendations. I also certainly don't expect people to just sit back and accept this. In short, I'm in almost complete agreement with what most of what you are all saying. As I said in my earlier post, I appreciate the efforts people here are making to change things that are detrimental to the ME/CFS community.

Rebecca wrote a remarkable post earlier describing the trade offs she is forced to make when making choices as to where to expend her extremely limited amount of physical energy. I feel the same need (by necessity) to be very judicious about where I expend my emotional energy. Feeling anger, and dealing with anger, just takes a lot of energy, and in a sense, becomes an "expensive luxury" for me.

This thread has so much good information, and so many interesting points, but it's a challenge for me to sift through it all. What makes it even more difficult is when posts have a lot of anger attached to them. Essentially, it "scatters" my ability to focus and concentrate. Thus, information that I might ordinarily be able to integrate and perhaps follow up on, becomes very difficult for me to do so.

Koan, when you say, "People are discussing things about which they have a lot of intense emotion", I think that's a good way of putting it. As you know, I probably would not be viewed as "faint of heart", given my robust defense of Mike Dessin over on the ProHealth board. LOL I guess I'm questioning why there can't be somewhat of a calmer tone when discussing some of these important issues. I would like to participate, but I find the current tone fairly draining and somewhat unsettling (not necessarily upsetting).

Tomk, I find virtually all the recommendations "out there" regarding CBT and GET to be quite ridiculous. And I would agree with most here that it has the potential to be very damaging. I've experienced it first hand myself. I would have to say however, that I've found my focus on walking when I can to be a good decision for myself. For me, it not only helps me maintain a semblance of conditioning, but gives me enormous psychological benefits as well. I feel during some of these walks that I'm "gliding along", and soaring for just a few brief moments. Priceless for my own sense of well being.

That said, I agree with you, that GET "shouldn't be presented to professionals (and patients or indeed anybody else e.g. insurance companies) as a tool that has been shown to improve activity levels, pain, etc. when it hasn't been".

Hey Dr. Yes. RE: " I hope no one asks those who have experienced so much pain and neglect on an institutional level, or those who advocate for them, to control their anger and frustration more than they already are." I don't think I was asking anybody to control their anger or frustration. What I was trying to do is convey is that it can be difficult for some of us here, myself included, to deal with some of these intense emotions.

We all here have varying degrees of energy with which we can work with. Being able to occasionally go for walks is something I have going for me. Being able to deal with intense threads such is this, is something much more problematic. I see many here trying to focus on and achieve some noble goals. I just thought I would mention that many who would like to help constructively support some of these goals may be left behind.

Perhaps I'm out of line with some of my thoughts here (especially after not reading the first 1400 or so posts :innocent1: ). I'm not even sure why I'm taking this much time to explain what I'm experiencing from this thread. Probably because it does strike me as VERY important. But I feel I may have to step aside for some of the reasons I've mentioned. And I suspect I'm not the only one. That's all I'm saying.

If I don't participate much longer, do know that I support what so many of you are trying to do. From the posts I've read by Jennie these past couple days (I've not read Jennie's earlier posts), it seems there's an opportunity to develop and put forth a somewhat more conciliatory approach (from both sides). I think that would be the best way to achieve some of the common goals we're all striving for.

Be well everybody! :Retro smile:

Best Regards, Wayne

 

[MEKoan]

I hear you Wayne! I think we all want this discussion to be as inclusive as possible while allowing for the most authentic self expression. Maybe it will work for you (and dear DB - Hi DB!), maybe not.

Anyway, the thread will probably cool and heat, cool and heat if it is true to its history. I think the overall trend is a cooling one - the way molten steel cools and becomes hard and fine. But, there will likely still be some heat. It is what it is.

Do what is best for you re this thread and stay ready to be called to cool action when the time is right

Peace out,
Koan

PS I wasn't kidding when I said I was not calling you faint of heart. I know you're not.

 

[jackie]

Good post Dr. Yes (and whether you know it or not...my knowledge of YOUR very own history/situation is what keeps me speaking my mind when I'd rather give up and watch a forties musical!)

Hi Wayne! I certainly understand the difficulties you're having with reading this sometimes contentious thread. I wish there was a way to make it easier to handle. Kim has painstakingly organized many of the patients experiences regarding exercise on another thread...which may help (if you can stand to read the stories...it's hard emotionally for me!)

I am one that has come late (as far as posting a comment) to the "debate"...having read in a stop and start manner, the entire thread. I admit I sometimes have an angry or even strident tone, now...but I'm not generally an "angry" person. I'm for the most part (by nature), an easy-going, kind-hearted person (a little too naive for my own good)...and if you've ever read my posts, I usually have a joking, jovial tone and often get in trouble for accidentally hi-jacking threads with goofy comments and stories! (I can't watch a mildly "violent" film or read or watch an emotionally charged book or movie - because I can't handle the sensory overload that can comes with that)

Participating on this thread has cost me a great deal - as I'm certain it has others. But when I learn of recommended practices and Educational Materials that HAVE been and STILL ARE available and being used by MY Health Care Professionals...I feel I must speak up. I strive to be rational and calm...but sometimes fail.

I know that many find this stressful and wish the debating (and especially the perceived fighting!) would go away or at least lighten up (I leave, rest up and end up coming back - sometimes hating this place!) But I am unwilling to give up...as I have been PERSONALLY affected by the practices I'm complaining about!

As much as I'd like to avoid this debate I can't....yet. I see this long thread as a sort of marathon...runners trying to reach a goal - using up their energy by the effort of trying to move forward, until they exhaust themselves and drop - handing the baton to the NEXT group of runners and so forth.

But it would be really difficult to keep your eye on the targeted finish (in our case, answers to the questions, and some feeling of resolution to the problems we are talking about AND assurances that these problems are being addressed as the "wait" must end!) - if you didn't know where the start line was!

I don't see this "going away" anytime soon...as the more "answers" we get - the more "questions" we seem to have!

Regards to everyone! j

 

[MEKoan]

As much as I'd like to avoid this debate I can't....yet. I see this long thread as a sort of marathon...runners trying to reach a goal - using up their energy by the effort of trying to move forward, until they exhaust themselves and drop - handing the baton to the NEXT group of runners and so forth.

This is such a useful, and beautiful, analogy. This thread is not an example of people failing to control their passions but of considered sacrifice in the service of truth.

Thanks Jackie,

you wild thing

 

[MEKoan]

Anyway, my latest victory is that I discovered how to create an avatar for myself. When I first discovered this image a week ago or so, I just loved it. And now I incorporated it into my life in my own BIG way. How about that? :Retro smile:
Wayne

Congrats Wayne!

You know "avatar" is from the Bhagavad Gita. It means "manifestation", I think, but also something about descending to earth. (I really should wiki before hitting reply.) Anyway, whatever it means, that's one cool avatar!

Peace

 

[starryeyes]

Wayne, Dreambirdie and Others,

I went back and reread what I wrote and quoted and I don't see anything upsetting to anyone but some of the people at the CAA. We need an advocacy group that's here for all of us, not just the mildly affected PWC. I need to say what I say and I have a right to do so.

I wasn't angry when I wrote my posts. I simply want to discuss these issues and give my viewpoints. I'm sorry if I'm upsetting some people here in the process. That isn't my intent but I'm also not going to stop saying what I need to.

My issue isn't with anyone here. I'm not even against the CAA. I believe they need to change and I'm very upset that they have been teaching our doctors to mistreat us for decades and that those materials are still accessible to doctors and laypeople alike on the web.

I hope you can see what I'm saying and realize I have our best interests at heart.

BTW Wayne, I love your avatar and congrats on getting it posted. I see a California black hawk circling the sky sometimes when I meditate and I feel like I become her and now when I see hawks circling it puts me in a meditative state.

teej

 

[gracenote]

Love your avatar, Wayne.

 

[jackie]

this is the weirdest coincidence i just have to add it it (at the risk of being ot, once again!) but it's such a classic example of illustrating some of what "we" have been talking about!

I opened my mail a little while ago to find a letter from my Ins Co (an HMO), and an enclosed pamphlet directing me to a websit to have a little chat with ("robo")emmi!

The letter stated that my ins. had been recently informed that I have a "back problem" (with low back pain) and they want to help me "Recover"! It seems that the very sweet pc Doc that I began seeing a few months ago (who also seems very sympathetic and willing to learn all i'm able to tell him about me/cfs - and have already told him oodles!) sent info to my insurance re: my back (he asked casually if my back hurt and I said (innocently enough!) "Sure...ever since I flew off the back of a motorcycle 40 years ago going 45 mph landing on my left side and sliding 1/2 a mile down an asphalt road! so yes! I do have back pain.... in addition to me/cfs.!" (AND he knows that I have severe PEM, in response to exercise/activity.)

But that was all it took to start the ball rolling (in case you don't know...your Insurance Co. WANTS you to "RECOVER" at any cost!...and stay out of their faces and out of their docs waiting rooms...and not be burning up $$$'s!)

Anyway...the pamphlet directed me to a 20 min online "informational document"...which I decided to calmly view.

When it was done I requested a printout so that I could get my facts straight...but the numbered points at the end were, in addition to CBT AND EXERCISE (the dreaded CBT part was an entire section all it's own...and I very nearly screamed when I saw it come up on MY computer screen - in MY house!) the following.

it says: #1.EXERCISE 2. lose any extra weight, 3. consider a new mattress, 4.get regular sleep, 5.stay active and EXERCISE, 6. walk regularly (and some very GOOD advice concerning Physical Therapy and even some sort of scary surgery info..which I would have appreciated oh, 40 years ago before I got sick!)

All good advice for the "regular" back problem patient! "But what about ME, "RoboEmmi" I cried?"...no response, as usual.

Now what. The letter said that "I will be discussing this info with my doc at my next appointment"...I'll tell him sorry, no - He'll say but your insurance wants you to follow these recommendations! and it's anybody's guess who will win THAT battle.

Will I be considered non-compliant? I've been down that road before...allowing myself to be subjected to Radio Frequency Ablation or RF Thermocoagulation (if you get easily queasy, don't look it up!) in the facet joints of my spine - having my nerves cauterized, being filled with steroids and a combination of chemicals that may have caused "Arachnoiditis" and which my I.D. Doc said may have been one of the the disasters that irreversibly EXACERBATED my me/cfs! (Just so my disability wouldn't be denied due to non-compliance of recommendations!)

I am once again powerless...hoping for "mercy" and understanding from a doctor that is trying to do his job AND his best for me - as he KNOWS it AND as he is DIRECTED TO DO! (probably with help from the offending cme education materials..for all I know!)

One more irritating trial to get through...hoping that this time I come out on top! ironically, j

Beautiful Avatar, Wayne! Soaring up and away!
(My daughter always tells me that she wishes she could be the "wings" at my back - lifting me "up and away" from my "life"!...just hope she doesn't really mean she wants to get rid of me, though!?)