gracenote
All shall be well . . .
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Welcome to Phoenix Rising!
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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Loving this quote button
Thanks _Kim_ . I never knew how that worked.Thank you Cort!! Now that you've got the single quote function down, why not try the multi-quote function? Click the [double quote +] button for all the posts you want to quote, then click [+Reply to Thread]. Everyone's quote will be in your text box and you can insert comments after each of them.
Yes, it is an interesting point that we are constantly told we are not doing things right.tomk said:Fred Friedberg is now recommending graded activity for the quarter of patients who are least active. For other groups, he is more nuanced. (Not sure how relevant that is to the CAA but my overall point is that I don't think the professionals necessarily get the issue)
Yes Fred told me in an interview that about 3/4's of patients are doing too much and that about 1/4 are doing too little. Staci Stevens believes about the same thing. I guess that means that few patients are doing just about right
You might be right that that comment is from Bleijenberg (or was it from a Belgian researcher like Van Houdenhove who has changed a little) but I have seen little evidence that generally CFS experts who have pushed GET and CBT based on GET have changed much on this side of the Atlantic. They're still promoting the same basic non-drug treatments, etc. I've read a few recent papers from Bleijenberg.Loving this quote button. That first sentence is generally followed I think. Its the second that is not well understood. A part of CBT and other therapies - at least as Ive seen them described - is to avoid the push-crash cycle; pushing too hard and then crashing. The fact that if you push too hard you crash - that can only imply a physiological problem can it not?
I think that researchers are slowly getting this on both sides of the aisle. I think it was Bleijenberg, a big CBT guy, who a year or so ago penned a paper stating that he thought that post exertional malaise should be a hallmark symptom for this disease (aka the Canadian Criteria) and he based that idea, ironically, partly on the CDC's HPA axis studies. Then he went through a scenario of pro-inflammatory cytokine activation parts of which could have come from Dr. Peterson or Dr. Maes.
I think some think "physical activity" and "exercise" is the same thing. The problem is exercise normally brings to mind weight lifting, running or aerobics.
But, I think Klimas and other CFS doctors are talking about body movement, stretching or other things like that.
I didn't even know that it existed. Yes Fred told me in an interview that about 3/4's of patients are doing too much and that about 1/4 are doing too little. Staci Stevens believes about the same thing...
Fred Friedberg is now recommending graded activity for the quarter of patients who are least active. For other groups, he is more nuanced. (Not sure how relevant that is to the CAA but my overall point is that I don't think the professionals necessarily get the issue)
The best version of this I've heard is that "physical activity" encompasses everything physical you do - from walking to get the mail to standing up to make a meal to walking for an errand to walking for just exercise to stretching. Doing chores around the house is a physical activity. I think I heard this from Campbell and from some of the CFS docs (forget where). For many folks, regular activities of life such as these are enough or already too much for them. Dr. Lerner in MI doesn't have people doing ANY exercise until they are able to handle their household affairs and work a 40-hour week without relapse or symptoms.
A part of CBT and other therapies - at least as Ive seen them described - is to avoid the push-crash cycle; pushing too hard and then crashing. The fact that if you push too hard you crash - that can only imply a physiological problem can it not?
I think that researchers are slowly getting this on both sides of the aisle. I think it was Bleijenberg, a big CBT guy, who a year or so ago penned a paper stating that he thought that post exertional malaise should be a hallmark symptom for this disease (aka the Canadian Criteria) and he based that idea, ironically, partly on the CDC's HPA axis studies. Then he went through a scenario of pro-inflammatory cytokine activation parts of which could have come from Dr. Peterson or Dr. Maes.
I heard Klimas, I think she gets the body activity thing right.
Stretching or some activity for five minutes the first day and then complete rest for a period of time (was it double the time of activity?), then trying two cycles the next day, depending on how you feel, etc.
As we all know, though, for most of us, the problem is not that we don't do enough, it is that we do too much or we don't stagger what we do, that is pace. But at first we need to think in very small increments, five minutes.
Tina
What is totally weird to me is that these hard liners are agreeing and emphasizing PEM. Peter White says that PEM is a cardinal feature. The NICE definition is the Oxford definition (merely idiopathic chronic fatigue) plus PEM. The UK psych CBT emphasises pacing to prevent exertion and crashing.
Yet they still push their harmful GET and CBT that says exercise has been proven to only help you and never harm you and that you have 'erroneous beliefs' that have to be corrected.
They're taking their "let's see how much damage we can do to the patients and still get away with it" core approach and pushing it to the maximum extreme. They're actually admitting PEM is perhaps the central feature of ME and then pushing a 'therapy' CBT that says the exact opposite in a demeaning way to patients and forcing patients to exercise. It's sickening and bizarre.
Just to be clear: what Fred Friedberg is saying is that the treatment for every single person who is in the bottom quartile of activity levels (bottom quarter) is that they should do more. (This would be a wider group than housebound people I think)Cort and Tomk, I must agree. Anyone who thinks 1/4 of pwME are doing too little and should do GET is not looking at the facts. This is very disturbing to me considering these people are considered knowledgeable.
Yeah, Lissette!"True knowledge is manifested in a change in behavior."
If the CAA wants to quibble about the appropriateness of therapies that focus on "changes in behavior" I will be in the thick of voices who are demanding a change in behavior from them to demonstrate that they have true knowledge of this illness.
Thanks for the reply, rebecca1995.tomk:
But just to clarify what Fred Friedberg is saying. He is recommending graded activity for *all* the patients (1/4) who are least active. The fact is that many of these too might be doing too much. My glands swell up later if I walk relatively short distances. My ceiling is a lot lower than other people's (it wasn't always this way - I was mildly affected for the first few years). What the severely affected need more than most is support - but what Fred Friedberg is saying is jeopardising people getting this.
Freak-out time. Why is Fred Friedberg saying this???
I'm not going to devote one more iota of energy to explaining how wrong and harmful this attitude is. See. All. My. Previous. Posts.
Frankly, this is the problem with having psychologists and psychiatrists running the major organizations.
What I love about the WPI is how they haven't been afraid to go head to head with the psychiatric lobby, instead of kowtowing, like so many of our advocacy groups.