jackie
Senior Member
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same post twice! thats never happened before...my computer is as tired and wonky as i am!
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Good morning Wayne,
Wayne, this is a long and complex conversation, the intricacies of which would be terrifically difficult to get without reading the entire thread. ... 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.
Peace to you,
Koan
That's great.The 1997 Chronicle article on pacing is now available: http://www.cfids.org/archives/1998/pre-1999-article14.pdf
jspotila said:The Outcomes study showed that before taking the course, 14.5% of the participants would have recommended a vigorous exercise program. After taking the course, only 2.4% would have, compared to 19.4% who did not take the course.
Regarding the Medscape CME course:
Hi Jennie,
Thank you for letting us know that the Spark Toolkit is no more. And, thank you, as an agent of the CAA, for being responsive to the community.
I want also to say that you were quite right re how the study came up in this conversation. I owe you an apology. I was letting my frustration get the better of me. Sorry!
I'm afraid I'm not very impressed with the following as it would be easy to misinterpret.
emphasis mine
It could quite easily be that the doctors who would not recommend a "vigorous exercise program" would feel quite justified in recommending a less than vigorous exercise program as a first line strategy across the board. They may have learned that "vigorous" exercise was not the way to go because they have been taught that graded exercise was.
Thanks for your time and your interest.
Koan
I may be repeating myself a little but if a new course is to be made, the question needs to be addressed as to who will write it. The same applies to other courses (e.g. the IACFS/ME are drawing up guidelines and the CDC were supposed to).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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Yes.It could quite easily be that the doctors who would not recommend a "vigorous exercise program" would feel quite justified in recommending a less than vigorous exercise program as a first line strategy across the board. They may have learned that "vigorous" exercise was not the way to go because they have been taught that graded exercise was.
The study showed that health care providers who participated in the Medscape CME program on CFS treat an average of three patients per week with CFS and are 46% more likely to make evidence-based choices about caring for these patients, specifically in diagnosing CFS, distinguishing it from depression, helping patients maintain function through aggressive symptom management and utilizing appropriate non-pharmacologic interventions as part of a treatment program. 85% of those who took the course indicated it would change their practice.
So to help pain for example, they might recommend a strengthening and conditioning program.Strength and Conditioning
A strengthening and conditioning program can reduce pain, prevent muscle spasms, increase strength and flexibility, improve balance, reduce falls, and enhance stamina and function in CFS patients.
Science tells us that CBT has no objective effect on any of the core symptoms of ME and that GET is positively harmful.This is contrary to the conclusions of antipositivist studies
where in the biased opinion of the investigators GET and CBT are effective.They do not however define what effective actually means
Jennie, I'm impressed with your ability to handle all this so well (I probably would have gone bizerk and cussed everyone out long ago). Whatever the differences of opinion, you certainly have my admiration and gratitude for your grace and maturity in striving for solutions in such a challenging environment. Thank you for all that you do.
Akrasia...Boy! What a breath-taking piece of writing! And I'd be willing to get booted from Here to KingdomCome in order to praise it!....j
A subset of people with CFS are so severely ill that they are largely housebound or bedbound. They require special attention, including a modified approach to exercise. Hand stretches and picking up and grasping objects may be all that can be managed at first. Gradually increasing activity to the point that patients can handle essential activities of daily living -- getting up, personal hygiene, and dressing -- is the next step.
Focusing on improving flexibility and minimizing the impact of deconditioning so patients can increase function enough to manage basic activities is the goal with severely ill patients.
http://cme.medscape.com/viewarticle/581527_8