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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. jackie

    jackie Senior Member

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    imo we should NOT have to try and repeatedly convince each other of the objections to the cme. If even a SMALL majority of pwc's strongly objected and gave what they believed were good reasons, shouldn't we back those folks up, to help protect them against possibly enforced "treatments" and make them feel safe? And yet MANY have strongly voiced their opinions that the cme material is NOT "safe" to be presented to doctors that may be treating us! Those of us with what we feel are valid oppositions, have made ourselves perfectly clear....stated all the reasons, given all the statistics/facts we could. Talked again and again of the emotional toll this was taking...wore ourselves down trying to plead the case against.

    Here is what I don't understand...removing the material will not HARM individuals who want to and are able (because of their personal level of functioning) to engage in exercise/activity. If they are ABLE, they are probably doing so already...if not, it seems logical they will inquire about the possibilty and a doctor can direct them to specific guidelines that can easily be put in place. BUT...leaving the material as it stands can cause great HARM....there is no way around that fact (especially with an unenlightened doctor)...right? Now I REALLY don't get this. Am I missing something? I'd like an answer...is there ANY possibility that the material will be removed and/or changed? Right away? Where is the open dialogue with the CAA? Are they hearing this debate? I need some feedback. I don't want to keep hearing the same words that I feel are being used to convince me/us that this is right....when so many voices keep saying this is wrong.

    OR...has a decision already been made to keep the cme material as it is, in place and available...and we aren't being informed? How do we know that the CAA IS even listening to THESE particular concerns?

    Do they know what we want them to do (many of us anyway)? Do they know how we FEEL? How upset and concerned we are? Does what many of us want MATTER? Does the caa not want to take the time and trouble to make a change that people with me/cfs weren't consulted about, in the first place? (Was this material developed with "patient" input...not just studies? Does anyone know the answer?)

    No one asked ME if I thought this was a wise move...did "they" ask you, or anyone you know? And now that I DO know about and have read it and have formed an opinion of how I truly believe it would be used (by the doctors I have available to me)...I'm saying I don't think it is. Why is it so difficult to accept that maybe this was not the right material to put out there...a mistake - because the people whose lives may be affected (and changed) by it....SAY it's a mistake?

    Are we wasting our breath?

    This thought IS terribly dispiriting - as Koan and Justin have already said. I'm so fed up with the arguments and debating that i'd prefer to forget all about this...but now I can't, because every time I go to one of my doctors (and God help me if I'm sent to a NEW one)...I'll wonder if by chance they took the course - read the very information I DON'T want them to read (inaccurate and for me, damaging)...as they are suggesting, ONCE AGAIN, that I exercise. All that's left to me, is to stay the heck away from this thread!

    And now I'm finally getting mad. And disgusted, frankly.
  2. Dr. Yes

    Dr. Yes Shame on You

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    Thank you Jackie. :Retro smile: Speaking personally, I would really appreciate that. But, as you say, this applies to more than just a small number of us.

    The CME is no longer "active" as of last fall, i.e. doctors can't get CME credits from it, though it is still available to be read on the Medscape site. I don't know if the CAA has any plans to reactivate it, as Cort suggested they should.

    Gerwyn -
    I posted a CAA article on the CME previously: http://www.forums.aboutmecfs.org/sh...-s-the-CAA-doing&p=72386&viewfull=1#post72386

    According to that article, the CME reached a lot of medical professionals (not all doctors; it was "marketed to physicians, physician assistants, nurses, pharmacists and other clinical staff in 19 general and specialty medical professions"):

  3. Gerwyn

    Gerwyn Guest

    How many changed practice as a result and how many patients were harmed by drs putting their own take on the information those are the real survey questions to ask.

    you and i both know how Drs obtain cerificates
  4. Gerwyn

    Gerwyn Guest

    hi Doc


    what else is the director of medscape going to say?

    Would you trust a marketing survey Outcomes inc like other companies of their ilk get business as a result of their history of providing correct(read postive) outcomes

    What the hell is a representative sample in the "control group". what the hell does evidence based choices mean and did they make evidence based choices before the CME

    Helping patients maintain function through aggressive symptom management and non pharmalogical intervention

    Translation vigerous excercise and CBT


    85% OF RESPONDERS ARE GOING TO DO THIS OMG!


    Proof positive the CME was not fit for purpose

    If that is a positive survey I would hate to see a bad one!
  5. brenda

    brenda Senior Member

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    "It was a sarcastic but innocuous comment about what "Phoenix Rising" means- not slanderous; look up slander. The false statement "[slanderous comment removed]", made anonymously by a moderator or Cort, is itself the only slanderous one that was made"

    justinreilly thanks for that support, of course any reasonable person knows it was not slander :

    SLANDERER

    A calumniator, who maliciously and without reason imputes a crime or fault to another, of which he is innocent. For this offence, when the slander is merely verbal, the remedy is an action on the case for damages; when it is reduced to writing or printing, it is a libel


    And as you say the opposite is actually true and it is libel actually. I admit it was sarcastic but only mildly so and not surprising I think considering the circumstances ie that a number of people here are extremely concerned to have a fellow sufferer is not standing against any hint of exercise suggestions when we have not only been injured by ignorant medical workers but by our own family and friends who think that if we would only try to do more we will be able to.

    "Please remember that the CME states that exercise can be very damaging to CFS patients and that patients should not exercise to the extent that they ncrease their symptoms. So if you couldn't exercise without getting worse -and it sounds you couldn't then they absolutely wouldn't ask you to. For very ill patients they simply talked about 'range of motion' exercises such as moving your arms up and down and grasping things. I assume that's what they would have reccommended to you - hopefully those 'exercises' would not have caused you organ damage."

    I am afraid you are wrong as even mild stretching exercises were bringing on heart symptoms but not till later that day and if I had not been so aware of my body I may not have made the connection. It was only through strict discipline in avoiding all absolutely necessary movements that I stabilised my condition. Besides any available energy should be kept for the body to use to start to recover, and then once one is in recovery, it is not necessary to use a graded program. So how do these doctors know for sure we are in a recovery state? Any interference by doctors regarding movement is unwarrented and inappropriate. PWC already have to cope with guilt over their activity levels. It shoud be be entirely under their own control how much or how little they do. It looks pretty ominous to me that this still is an issue and we are not being listened to..

    I request that you remove that accusation of slander Cort. Removing something I say that you do not like is one thing, but this is quite another.

    Brenda
  6. jspotila

    jspotila Senior Member

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    Actually, the only thing "telling" about it is that the article is pre-1999 and very few Chronicle articles from pre-1999 are posted online. But the archive page states that any article not posted can be requested through the website.
  7. jspotila

    jspotila Senior Member

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    Jackie, I am a member of the Association's Board of Directors and I have read this thread since its inception. The Association is fully aware of the opinions expressed in this thread, as well as input that comes in from our Facebook page, blogs, emails, and so on. Changes have been made in response to some comments already - the Canadian Case Definition is now posted prominently on the Healthcare Provider page of the Spark site, and other changes have been made to that page as well. The Association strives to be responsive to all the feedback it receives. The Association's FAQ page is another thing that evolved out of feedback we received at the end of last year. The page was last updated on April 13th, and additions are made on a regular basis. Finally, the Association secured a private donation to support its twice-monthly webinar series to offer another way for patients to hear directly from clinicians and researchers like Dr. Bateman, Dr. Gluckman, Dr. Medow, Dr. Vernon and Dr. Jason.

    Dr. Yes quoted data showing that 15,000 healthcare professionals had completed the CME by March 2009. I believe that number climbed to 35,000 by October 2009. The Outcomes study that Gerwyn referenced was paid for by the Association so that we could evaluate whether the CME was improving those professionals' attitudes and practices about CFS.

    I posted earlier in this thread (I think) that Medscape did not renew the CME credits in October 2009 because the Lombardi study had just been published. Medscape and the Association expected swift, high-quality replication and validation studies; Medscape wanted to update the CME with information on multiple XMRV studies. As we all know, the studies have not been what we hoped. I do not know the current status of Medscape's plans for the CME credit.
  8. Koan

    Koan Be the change.

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    Good morning Wayne,

    Haven't seen your rhythm in a while. I hope you are not faring too badly!

    Wayne, this is a long and complex conversation, the intricacies of which would be terrifically difficult to get without reading the entire thread. Cort is not under attack. What is under attack is the existing strategy for conveying complex concepts regarding ME/CFS treatment and management to busy doctors with preconceived ideas.

    This strategy is flawed in the extreme but those of us - the vast majority - who are voicing our well thought out and well supported concerns are met with a reflexive defence by a few people (a very few) who seem unable to consider that what we are saying has merit, that our experience is valid and that we are reliable witnesses to said experience.

    If you are moved to take part in this you will need to take your own continuing education class on the thread but I must warn you that you can't skip a class, or a post, and there will be a test. I wish it were something as trivial as semantics but it is not.

    Peace to you,
    Koan
  9. jackie

    jackie Senior Member

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    Thank you Jennie for your reply! I do know that you come "here" as often as you can (and I appreciate that)...I just didn't know if you had been present to "experience" the more RECENT posts to this thread...(and passing what you would have read on and any feedback from the CAA) So, until you clarified this...I didn't know!

    I'm still a little confused. Does this mean that the specific cme material (worded as it is) will or will NOT be used...and if so, where? (I did know that it had not been renewed...but mistakenly THOUGHT a renewal was pending...sorry!) In other words is "our" fight regarding this issue and making our objections heard...over or not?

    I'm also curious...seeing as how this has been a very large "public" reaction/outcry to the issue of exercise/activity AND since this might very well be the first time in the history of our illness that so many of us have an ACCESS to material we feel strongly against - and a VENUE (PR) to speak our minds about all of it!...has the caa made mention of our concerns and their reactions, on THIS issue?

    Any comments you can share with us? That would be of great interest to me. Some words that we can take away with us...any words of reassurance on THIS specific issue?

    Not only the more generalised comments that our concerns are being heard and noted by the CAA...but these concerns and objections - the ones we've been talking about for so many days.

    That would be my continuing question...in other words..will a strong reaction to material that many have objections to, make a diifference? In fact, a profound difference - where we can be confident that the particular cme material will NOT be left as it is and available for health care providers?

    I read that you don't know the current status of Medscapes's PLAN'S for the CME credit...but who might know?

    To clarify - I keep bolding the words "These", "specific", "particular" etc. because I'm attempting to narrow my concerns - (and my dwindling energy...i type with one hand) and thus the responses I'm looking for, to the most recent focus of this thread). This is the awful aspect of internet "talking" imo....when a few in-person sentences could answer so many questions and save so much time...but this is all we have to work with...so patience is most certainly a virtue here!

    Thanks again for your response to my questions and comments and also, of course, for coming here and listening. jackie
  10. starryeyes

    starryeyes Senior Member

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    So far the XMRV studies have been exactly what many of us expected them to be. The positives are where you'd expect to find them and the negatives are too. :Retro smile:

    It's telling and sad that the CAA keeps missing that.
  11. Gerwyn

    Gerwyn Guest

    hi Jennie,

    According to the results of the study the CME was absolutely disasterous for the treatment of patients with severe ME
  12. Koan

    Koan Be the change.

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    Jenny, What do you make of this perspective?

    I share Teejkay's view, and heard the warnings of Nancy Klimas long ago, that this is the way these studies would go. There are no surprises here at all. What is this divide all about? There seems to be some fundamental difference that I don't really understand but it seems remarkably consistent. Please understand that I am not asking a question to which I know the answer. I sometimes think that there is something fundamental to this discussion that I just don't know because so much of it makes no sense to me at all.
  13. jackie

    jackie Senior Member

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    ah...jeepers!? I had to go and read the "sparks" link To my embarrassment I NEVER HAVE, before now.

    Of course, I'd HEARD of the controversy from many others here...and admit I'm dismally behind in my own "EDUCATION" in the very disease I'm living with! (As way of an excuse...I didn't have the brain power (cognitive and memory-wise) until the past 1.5 years...so I have a LOT of catching up to do!)

    But imo the Sparks material is as troubling ("troubling" is as mild a word as I can use) as folks say it is! Has everybody else already looked at it...am I the only backward one?lol!

    I stopped reading at some point...was that Dr. David Bell?...has anyone directly contacted some of these good docs (who have devoted so much of their lives and careers in caring for and advocacy for "us"...and asked "why"! when some of the recommendations fly in the face of our experiences as patients? Just curious and curiouser...(and worser and worser). j
  14. Gerwyn

    Gerwyn Guest

    hi Koan,

    What I dont understand is why anyone thought they would find xmrv in patients with clinical depression.That is all Oxford diagnoses.I,m equally suprised that The CAA seem not to be aware of that despite Susan Vernons paper on the subject.

    Even Mclure admitts that the patient grpoups were entirely different but we have had nothing but silence from the CAA on the matter
  15. Koan

    Koan Be the change.

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    I know, Gerwyn. I really don't understand. I can only assume there is something behind the scenes, some history or politics, perhaps, that accounts for this. Nothing else makes any sense. And, even as we discuss the CME, the studies and WPI is raised?! What has that to do with this? What am I missing?

    Confused.
  16. Cloud

    Cloud Guest

    Yep silly me, I'm gonna jump into the fray with my opinion once again. Please forgive my redundancy, but I feel very strongly about this issue. Had I known 16 years ago what I know today, I would not have become so severely ill. Pacing would have spared the progression....GET would have contributed to a progression....And that's basically why I feel so strongly about this topic. Currently, no amount of cautious GET will improve my condition....it will in fact put me back into that deep abyss. And this is true for the vast majority of us.

    GET as a viable treatment for ME/CFS seems like propaganda to me. There is no justification to continue supporting it on any level when so few benefit from it....and the majority are severely damaged by it. The vast majority of us and some of our best researchers know without a doubt that it's deadly for this disease. GET for us is like treating Diabetes with sugar (but much worse). But hey....maybe if the diabetic had a Graded Sugar Consumption program (GSC), they could work back up to a full RDA recommendation for daily sugar. Pay no mind to the numbness in your feet because that's just feeding into your somatoform disorder.

    Most doctors don't even believe in ME/CFS....the ignorance around appropriate treatment of this disease is vast. Supporting GET as a viable treatment recommendation only supports that ignorance and it gives doctors a way out of their feelings of powerlessness and inadequacy by providing an easy (yet disastrous) treatment option for them, while causing extreme damage to us. We have been in an uphill struggle for years to banish the propaganda of ME/CFS being a psych disorder. If we lose that struggle the price will be great! The price has already been much too great. Supporting GET on any level only supports that propaganda and is a huge disservice to our community as a whole. Since it's but a minority that might be helped by GET, yet the majority are damaged beyond repair, why in the world is any manner of this treatment even considered? It seems to me that our advocacy groups should not be even hinting of GET as a treatment option. Is the potential benefit so great for a few, that it's worth the price of damaging the majority of us beyond repair. The bottom line is.....the extremely detrimental risks of GET far FAR outweigh the potential for a small amount of benefit....so why in the world do anything other than condemn the practice entirely?
  17. Gerwyn

    Gerwyn Guest

    An example of someone prescribed an excercise programme

    "I have been kicked out of a gym for falling off the equipment paralyzed and unresponsive. Although I can swim, when I try to exit the pool I fall back in paralyzed, unable float, and start to sink. I did benefit once from having an OT visit me in my home, but the benefits quickly went away once the OT visits stopped (due to insurance not covering it). The physical therapist didn't know what to do with me when I was paralyzed or non-responsive. One even forced me to go to the ER (which is almost always a total waste of time). I had opened the door and fell right in front of him because cold draft took me down."
  18. jspotila

    jspotila Senior Member

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    The 1997 Chronicle article on pacing is now available: http://www.cfids.org/archives/1998/pre-1999-article14.pdf

    The Medscape CME on CFS belongs to Medscape, I believe. The question about renewal applies only to the Continuing Medical Education credits (which expired October 2009 after one year). As I said, I do not know the status of any plan to renew the CME credit (Medscape wanted to add new material after the Lombardi paper), nor whether the Association can or will use the material in any context. The staff is responsible for management of issues like this, and I will follow up to see if there are any specific plans.

    I participate on PR on every day I am physically able, and on many days even when I'm not so able. There are staff members also reading these threads very carefully. The opinions expressed here (and elsewhere) have shaped the content of our website communications, such as the changes to the Spark site, the withdrawal of a CFIDSLink article that many here found objectionable, and more.

    I don't want to put words in your mouth, Jackie, but I'm hearing your question in the context of this whole thread and others regarding Association materials. I hear a request for an immediate overhaul of all the Association's materials, or at least a commitment to a particular timeline for such an overhaul, and for some PR members this is the only thing that would count as "listening" to patients.

    The most recent communications from the Association (such as the DSM-V letter, the article in the American Academy of Pain Management, and the webinar series) have been praised by many PR members. And communications is only one aspect of the Association's work - there's the BioBank, our research grants, and so on. I am not saying that communications is not important; I am saying that the staff has to prioritize their work. We don't have the people to get all this done at once, even though our 8 staff members work 60 to 80 hours a week regularly.

    Does your input matter? Does PR input matter? Absolutely! All of this, and countless other "inputs" (I mean in the broadest sense), go into the mix and have an impact on what the staff works on.

    As I said, "Medscape did not renew the CME credits in October 2009 because the Lombardi study had just been published. Medscape and the Association expected swift, high-quality replication and validation studies; Medscape wanted to update the CME with information on multiple XMRV studies." That's why this is relevant to the Medscape discussion.

    I think it would be fair to say that in October 2009, the Association expected actual replication studies of the Lombardi paper. We expected the federal government to move swiftly, as promised at the October CFSAC meeting, to conduct its blood studies. We expected CDC to publish on its XMRV work. None of that has happened. It's a tough call - revise the CME now (which means deferring other work we're doing) to reflect the negative XMRV studies, and then revise again (deferring other work we're doing) when more studies are published in the next few months? Or focus on research which will produce results like the Light study - a potential biomarker for CFS and post-exertional malaise? Or the BioBank? It's all important, and it can't all get done at once.
  19. Gerwyn

    Gerwyn Guest

    the results of the survey clearly show thet the CME was a total disaster for patient care.85% of responders said that they planned to treat the symptoms aggressively to maintain functionality and use non pharmaceutical interventions

    85% of respondents plan to use GET and CBT.The CDC did not even have a test for xmrv in the blood at the time and are still trying to develop one.

    The Light study as it stands is not powered sufficiently to enable generalisation.Sadly it is yet another pilot study albeit a bigger one.

    XMRV on the other hand is capable of explaining the range of neuroendocrine symptoms not just PEM which alone would not qualify for ccc diagnosis.
  20. jackie

    jackie Senior Member

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    Jennie, no problem about the "words in my mouth". For myself, personally...I'm not demanding an immediate total overhaul to all the assoc. materials, as proof that I'm being heard....that would be unrealistic - a removal of "questionable" materials if/when they are brought to PWC's attention - and then subsequently brought to our advocacy groups attention - is what I was thinking of.

    IMO, sometimes nothing is better than something...sometimes. Removing training/educational materials that are questionable/objectionable/harmful (in many minds) doesn't mean doing away with acceptable information in other areas. And this, of course, involves a judgement call....but in THIS particular case, I can't find the flaws in "our" reasoning and assessments of the potential for disaster.

    Also...perhaps an acknowledgement of the dangers specifically, as an example that protesting PWC's are being heard (perhaps admitting that the cme, for example, was a "mistake" based on patient experiences and new information...(not asking for apologies or groveling etc, here)....some things simply turn out to be mistakes...and imo leaving them in place while saying "this or that may not be quite right, but"...is not quite right!. (In a perfect world I guess that translates to "if it isn't the best for us now - remove it, until it is. It seems so simple to me...but I am only one "voice".)

    Anyway, thank you for your calm reply to my questions/comments. jackie

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