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ME/CFS: In Free Fall Through the Looking Glass
Jody Smith continues to try to put into words the horror of the altered state that hobbles the brains of those with ME/CFS...
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Time for the Big Talk. How's the CAA doing?

Discussion in 'General ME/CFS News' started by hvs, Oct 26, 2009.

  1. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I like. Looking forward to more insightful postings, akrasia!
  2. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Jennie,

    Thanks for your inquiries on our behalf. It is very nice to see that some concrete changes are being made!

    I would have liked to have known earlier that CAA doesn't plan to do anything to update or renew the "CAA CME" as you had previously implied or indicated that CAA was waiting for XMRV replication studies to be published. Please correct me if my statements here are not accurate.

    I would also have liked to have known earlier that Medscape owns the IP rights to the CME and does not have plans to update or renew it. Again, please correct me if inaccurate.


    Teej,

    You posted (sorry I can't find the post now) your objection to Kim McCleary's request to remove her name from the CDC CME. I requested that CAA remove its name and those of its employees from this CME so that there was no more imprimateur from a patient org on this doc. So, I applaud her request.
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I appreciate your apology. Obviously, I overstated the case in my post as a couple of people have pointed out.
  4. jspotila

    jspotila Senior Member

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    No, when the credits expired in October 2009, Medscape and the Association agreed to wait for more XMRV studies before making changes. At present, the Association has no plans to use the CME, and the question of future changes is unresolved. The course belongs to Medscape, so we can't just go in and change it at will. Changes have to be approved and managed by Medscape. I have no information about what Medscape's own plans are for the course at this time.
  5. Robyn

    Robyn *****

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    xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
  6. jackie

    jackie Senior Member

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    wow! robyn...and wow again!

    I'm sorry I can't eloquently express my admiration for you and your fighting spirit...but I used up all my "share" of good words (and what was left of my energy) trying to get my point across today!

    Thank goodness we have somebody like you on our side!~jackie (welcome to the fray!:Retro wink:)
  7. Roy S

    Roy S former DC ME/CFS lobbyist

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    off topic labels PLEASE

    Folks, could I ask that people at least label posts off topic when appropriate?
  8. Roy S

    Roy S former DC ME/CFS lobbyist

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    Cort, seriously; do you expect anybody to believe this?

  9. starryeyes

    starryeyes Senior Member

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    ((((((jackie))))))

    I can't believe this is happening to you of all people. What you are describing here with RoboEMMI is so Orwellian, it's horrible. I fear that this could become commonplace. I don't think I'd let them put me through their harmful "programme".

    I just can't believe this is happening in CA. You know what they say, as CA goes, so goes the rest of the country. So far most of the horror stories I've heard about involving doctors for us in the states have been in CA and did you know that the medical students at the University of San Francisco are being indoctrinated in CBT and GET for PWC by the CDC's new programme under Reeves and that they're planning to use it for many other ailments and illnesses as well?

    This is probably coming down from Reeve's new position in the CDC. Does this mean that in the future the uninsured will be the people who can't comply with the programmes they're put into?

    I wonder.. and meanwhile jackie, I'm hanging onto your every word. I do feel that this is on topic here but if you decide to discuss it somewhere else on the forum please let us know where.

    Hugs to you jackie. Hang in there. Gee, I sure wish we had an advocacy group that could help you.
  10. Koan

    Koan Be the change.

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    I don't know what to say. So, I'll just echo Teejkay.
  11. jackie

    jackie Senior Member

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    OFF TOPIC (MAYBE?) MY RESPONSE TO PREVIOUS COMMENTS
    (my gosh! never done this before, accidentally started out with a "7" size font! yikes! but I like this way of warning of a "hi-jack" attempt! I don't feel so guilty)


    Hey guys..."Orwellian" indeed! "Robo-Emmi's" voice was creepily conspiratorial! - everything in a soft "just between you and me" voice (MY paranoid take, anyway!) and after each training segment she'd ask "do you want me to make any notes for you to take to your appt?"...my response - silence, and she'd say "Hmmmm...NOTHING right now? ok! (brightly), lets move on!" SO weird -I think Emmi had ESP, and knew I was begining to get suspicious of what lay ahead. (seeing the words "Cognitive Behavioural Therapy" and the nearly whispered "assurances" of all the advantages of "it", truly shocked me...here I am debating about the fallacy, the dangers and the harm it has done to many, and until now, had only READ of OTHER'S experiences with this!

    BUT...I think that was "done" to me (although I was never given any data with "CBT" written on it) at the start of my illness years ago (around 1998, I think) when once again, my ins. co and pcp at that time, referred me to a Psychologist for help dealing with any "anger and depression" I might have concerning my new dx. Even though I protested that I really didn't FEEL any anger OR depression...just a lot of confusion as to how I was being treated (or NOT treated to be exact!)

    I was given certain audio tapes to listen to often - reinforcing what my "correct and more helpful attitude" to my situation should be. I didn't play them at home - ever...but during a part of each therapy session we DID play the tapes (funny...my therapist always gave me a stuffed bear to hold on to (presumably in case I wanted to cry or scream or hit something...not sure). And during our tape playing sessions I pinched him (the bear, not the therapist) quite hard and quite a lot. HE never uttered a sound. (Maybe he'd already had a lot of CBT) I was pinching in FRUSTRATION - NOT anger!

    Anyway...apparently "they've" got my number now - so my husband and I are going to show the doc some of these posts, AND the studies contraindicating exercise due to PEM, and maybe with some back-up from my id doc (must ask) just say NO...and see what happens. I'm hoping this won't be viewed as "non-compliance" because frankly, I don't think I COULD comply (the GET part)...if my very life depended on it! (I'm coming to YOU, typing in bed, while laying down...and that is the norm for me!) The CBT nonsense will be recieved by a simple SNORT! from me! This is a big deal...as I worry about my SSDI being yanked away.

    Perhaps I will be one of the fortunate ones...and having multiple diagnosis of chronic viral infections (including chronic VZV activation), Myelopathy and me/cfs will "protect" ME. (IF my protestations are taken seriously!)

    What about those that DON'T have lab tests/results or ANYTHING to back them up? Nothing but the word of a PWC?

    But this example (imo) highlights the debate we are having here. I believe we are going to be seeing this more and more - ESPECIALLY with the new Health Care Reform, and Ins. co's are going to be on the lookout for ways to deny or limit treatments and coverages deemed unnesessary in the LONG TERM. Unfortunately, "Long Term" care and treatments are what "we" REQUIRE, in most cases!

    (And I DO think that the timing is too coincidental to NOT be connected to Reeves and his "new" position...lots of time on his hands, too many ingrained erroneous opinions, LOTS of "Politics" involved AND $$$ and HE'S not giving up control!imo!)

    (And THIS is the last I'll say about THAT...so no need to start a new thread:Retro wink:)

    jackie:Retro smile:
  12. Dolphin

    Dolphin Senior Member

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    I think you make a lot of good points.
  13. Dolphin

    Dolphin Senior Member

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    I think you make a lot of good points.

    I also don't accept that the new exercise program has been proven to be 100% safe.
  14. bluebell

    bluebell Guest

    Taking the baton for a sec...

    Has anyone seen Angels in America? In the play, the angel repeatedly tells the character suffering from AIDS to "be still." The sick guy doesn't really take this advice, and survives thanks to the first retrovirals;-). Awesome play - the HBO version is also quite good. I often think about that angel's deadly advice, since my body is always telling me to be still. In our case, I'd prefer to think the angel would advise us to "be quiet."

    Add my voice to the chorus of those who think that the prudent thing is to warn CFS patients of the very real dangers of exercise. One of those papers listed way back seems to indicate that exercise can lead to abnormally low oxygen levels in the blood. So I would guess brain damage, among other things, is a possible consequence.

    All of us want to be more active. If I had my health back, the first thing I would do would be to start training for a marathon. Although my doctor thinks I am a loon, she believes me when I tell her that exercise makes me sick - but I think this is because she knew me before I fell ill, and knows that I love running too much to give it up without cause. Otherwise (and she is a smart, good doctor) I feel confident she would be on me to move around more. I have tried gradually doing more physically and it always, always, always leads to a crash. And now I can't even walk around the block with my son and the new dog. How I loathe this awful disease.

    This is our life, but the average GP just does not have time to read or think deeply about CFS. That is why what they do read about our condition should be as accurate as possible. The papers that indicate that exercise is good for us are flawed. If one comes out with good methodology that uses the CC, I will eat my hat. Or run a marathon;-).

    The use of the term "kinesophobia" strikes me as particularly cruel. It's like telling houseflies that they must give up their ridiculous, unhealthy arachnophobia. Please.
  15. The Phantom

    The Phantom Member

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    Off topic, too

    I know this is off topic, but I want to join sarahg in urging as many people as possible to send written testimony to the CFSAC by 5:00 pm EDT today. There are two complete testimonies written here:

    http://www.forums.aboutmecfs.org/showthread.php?4462-Deadline-april-26-to-effectively-save-the-cfsac!

    that can be copied and pasted or edited by you. and sent to cfsac@hhs.gov

    The second link is to Cort's post and has bullet points that can be elaborated. As someone said somewhere (I'm losing track of what I've read, so please forgive me for not giving due credit) numbers matter to the U.S. government, so the more testimony they receive the better.

    The committee has shortened the meeting (one day instead of two) and shortened the time for the public to give testimony from five minutes to three minutes. They also are trying to limit the agenda to the CFSAC Charter (not XMRV, definitions, need for centers of excellence, more funding.....). To me, this says that they would prefer not to hear what we have to say. I think it would be good to respond by saying as much in writing as we can. Although the two testimonies posted on the first link are fairly long, the whole thread is fairly short. It won't take much time to read it.

    By the way, I don't think any of us think the CFSAC is the greatest thing since sliced bread, but it's currently the only public forum we have to speak to the government in the U.S.

    Over and out.
  16. jackie

    jackie Senior Member

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    Phantom...im running out of time as its 9:30am calif. time - so sorry for being a knucklehead...but in your post #1701 i go to your blue link "...save-the-cfsac" copy and paste one(?) of the letters i'll find, right? (must copy as i havent brain/time to be original today!)...then send to next blue link cfsac@hhs.gov? have i got it right? (i know original would be better but something here is better than nothing i guess.) ok going to go and try this! thanks...j
  17. The Phantom

    The Phantom Member

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    Reply to Jackie

    Yes. The first page of save-the-cfsac blue link has a long post by Gerwyn that's a letter about DSM5, not the CFSAC, near the top. Scroll down to the bottom of the first page and you will find testimony by jspotila. You can use that or you can use my testimony on the second page near the bottom. I have 2 posts, one is a preface and one is testimony. It says what they are in the title box.

    Good luck! You can PM me if you have a problem. I still have to get my testimony sent in, too. Mine may change a little when I proofread it again. I don't think it hurts for them to hear the same thing more than once. Also, if they get a bunch of emails at once it will get their attention.
  18. The Phantom

    The Phantom Member

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    2 more letters to choose ideas from, still off topic

    I just wanted to let everyone know that 2 more great letters to the CFSAC have been added to the save the cfsac thread at http://www.forums.aboutmecfs.org/sho...save-the-cfsac!.

    It's possible that Gerwyn will remove the DSM5 post to make the thread easier to navigate, so the directions given to Jackie above may change a little.

    There are more than 2 more hours to submit something. It doesn't have to be long.

    CFSAC's email address is: cfsac@hhs.gov

    Sorry to repeat--I'm just trying to make it as easy as possible.
  19. Dolphin

    Dolphin Senior Member

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    Yes, drug companies wouldn't get away with this ("We know the other protocol for taking this drug is unsafe but this one is perfectly safe even though we haven't actually really researched it on many patients. Just trust us").

    Yes, good points.

    A general problem I have with exercise programs for the illness is that one doesn't know what may come up later in the day: most people have others who can create demands somewhat out of the blue e.g. children, partner, relatives, pets (e.g. get ill, dirty, etc). Perhaps responsibilities to do with a job. Or something happens where you live (a problem of some sort) or any other random or accidental event. If you've already used up a lot of your energy quota for the day exercising you can then over-do it. While it's hard to do a few exercise sessions across the day as that might mean a lot of showering, changing, etc.

    For example, you start walking for five minutes or whatever. You gradually realise you might be able to work up to 10 minutes after a period. However, then you're hit with something later in the day one day which means you've actual overdone it. While if you hadn't done the walking or hadn't increased from five minutes, you might be ok. Keeping some energy "in the tank" seems to me can be safer. This is an idea in my head that isn't fully developed.
  20. gracenote

    gracenote All shall be well . . .

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    I think this is a good idea you're working on tomk. No matter how well we plan, real life has a way of adding extra demands. Keeping some energy in the tank sounds necessary.

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