"Exercise should also not take priority over activities of daily living."
"Exercise should also not take priority over activities of daily living."
Should be expanded upon greatly.
I liked that, too.
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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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"Exercise should also not take priority over activities of daily living."
"Exercise should also not take priority over activities of daily living."
Should be expanded upon greatly.
I agree with the concerns about recommending even simple exercise.
A hypothesis underlying the use of Cognitive Behaviour Therapy (CBT) for ME/CFS is based on the premise that the patient's impairments are learned due to wrong thinking and “considers the pathophysiology of CFS to be entirely reversible and perpetuated only by the interaction of cognition, behaviour, and emotional processes. The patient merely has to change their thinking and their symptoms will be gone. According to this model, CBT should not only improve the quality of the patient's life, but could be potentially curative” (46). Supporters suggest that “ideally general practitioners should diagnose CFS and refer patients to psychotherapists for CBT without detours to medical specialists as in other functional somatic syndromes” (47). Proponents ignore the documented pathophysiology of ME/CFS, disregard the reality of the patients' symptoms, blame them for their illness, and withhold medical treatment. Their studies have often included patients who have chronic fatigue but excluded more severe cases as well as those who have other symptoms that are part of the clinical criteria of ME/CFS. Further, their studies fail to cure or improve physiological impairments such as OI, sore throat, IBS, etc. Dr. A. Komaroff (48), a Harvard based world authority, stated that the evidence of biological process “is inconsistent with the hypothesis that (the syndrome) involves symptoms that are only imagined or amplified because of underlying psychiatric distress. It is time to put that hypothesis to rest”. Some physicians, who are cognizant of the biological pathophysiology of ME/CFS, teach patients coping skills but call them “CBT”. We urge such doctors to use the term “Self-Help Strategies” and avoid using the terms “Cognitive Behaviour Therapy” and “Cognitive Retraining Therapy” (pp. 10-11).
Externally paced “Graded Exercise Programs” or programs based on the premise that patients are misperceiving their activity limits or illness must be avoided (p. 12).
Total illness burden, impairments, low endurance, overall phenomena, and fluctuation of symptom severity and activity boundaries must be respected.... It is essential that the patient does not exceed his/her endurance limitations or activity boundaries too often or too deeply because this can cause a severe, long-term relapse (p. 10).
Assist [them] in recognizing aggravators and early warning signs so they can stop before exceeding their activity boundaries and prevent crashes. Encourage patients to take their temperature before and after an activity. If their temperature drops after an activity, they may have done too much (p. 11).
Fatigue improvement can be facilitated by advising patients to pace or “spread out” activities so that ongoing exertion remains below the threshold of post-exertional symptom flare-ups (Figure 2). For instance, rather than completing housework in one uninterrupted push, tasks may be divided into smaller pieces with rest intervals interspersed (p. 21).
CBT is a much publicized and debated psychotherapeutic intervention for ME/CFS that addresses the interactions between thinking, feeling and behavior. It focuses on current problems and follows a structured style of intervention that usually includes a graded activity program. CBT may improve coping strategies and/or assist in rehabilitation, but the premise that cognitive therapy (e.g., changing “illness beliefs”) and graded activity can “reverse” or cure the illness is not supported by post- intervention outcome data (78,79).
In routine medical practice, CBT has not yielded clinically significant outcomes for patients with ME/CFS (80-82). Furthermore, the lack of CBT providers who specialize in this illness (psychologist, social worker, or nurse) indicates that CBT may not be an option for many patients with ME/CFS. More detailed information on CBT protocols and the controversy surrounding its application in ME/CFS is presented elsewhere (82,83) (pp. 23-24).
Even though our panel members are heavily committed and frequently travel, they indicated the project was very important and were eager to contribute their expertise and time. The logistics of getting information back and forth to busy panel members, incorporating various suggestions and hopefully still being able to coordinate a consensus among the panel members largely determined the size of the panel (http://forums.phoenixrising.me/inde...ia-for-me-the-marj-van-de-sande-interv.12192/).
Yeah, that's why I'm letting them know. I've run into a dozen posts in the past hour or two that had at least one paragraph of dark text (sometimes much more). I use a dark background to avoid eyestrain, and highlighting everything to show up as bright blue and a white background completely defeats the purpose of using a dark background. And I doubt that even people that like a white background would be very happy with reading a lot of bright blue text against it.
The first thing that needs to happen though is that the CDC toolkit for CFS is so poor that it needs to be removed. Its not acceptable to leave it out there.
The ME/CFS Primer uses the CCC. But when it comes to case definitions, we heard today that the CDC may need up to 18 months to collect its data on case definitions, up to 18 months to get to the point where consensus-building can begin. Didn't we hear at the last CFSAC meeting that their data collection could take up to a year? The CDC blames the clinicians for their slow progress. But a larger group of clinicians committed to producing the ME-ICC using a Delphi-type process:
Some members of CFSAC seem determined to reinvent not only the wheel, but also the very process of inventing wheels. I was surprised to hear them agree to find out how it all happened so quickly in the case of AIDS.
According Dr. Belay, the CDC's CFS Toolkit was designed to fill a vacuum. With the publication of the ME/CFS Primer, he suggested that the CDC might be prepared to take down its Toolkit voluntarily (no need for a recommendation from CFSAC).
With the use of the CCC in the ME/CFS Primer and the publication of the ME-ICC, might the CDC similarly be prepared to take down its Fukuda case-definition were CFSAC to make this recommendation?
Going by what has happened at CDC in the past, we will next convene a meeting of experts. CDC does not decide any of this on its own. That is why I always say it is not CDC’s definition. For good, bad, or indifferent, just like in the ACIP [Advisory Committee on Immunization Practices], CDC implements what the committees and the recommendations are. That is how the 1994 case definition got established. 1994 is long enough ago that everyone agrees it definitely needs to be revisited.
As I read it, no they wouldn't because they haven't yet made a better case definition. Apparently the CCC and the ME-ICC count for diddly-squat because they weren't produced by a government agency.
I could be reading Dr Belay wrong, of course.
As seems to be the status quo at the CDC with regards to ME/CFS -- the right hand apparently doesn't know what the right hand is doing, much less what the left hand is doing.The CDC does go out of its way though to explain that it doesn't produce case definitions. At the last CFSAC meeting, Dr. Unger said:
I made the same interpretation as you did. To be acceptable it requires appropriate government oversight. Personally I think the CCC or ICC should be the standard for now, and any agency investigation should be aimed at testing these two head to head. Its been a while since I read anything on Jason's ME definition so I can't comment on it.
Dr. Belay didn't say that the CDC would post the ME/CFS Primer. He volunteered instead to take back to the CDC the suggestion that they remove the Toolkit now that the Primer is available. He didn't think a CFSAC recommendation would be necessary as the Toolkit had been there to fill a vacuum.
My question was not whether the CDC would post the CCC or ICC, but whether they would similarly remove the Fukuda definition now that the CCC is available in the ME/CFS Primer and the ME-ICC has also been published. CFSAC ran out of time and failed to make any recommendation concerning case definitions.
Of course, Lenny Jason isn't a clinician (or a panel of experts).
RA is diagnosed clinically, but classified according to the 2010 American College of Rheumatology (ACR) and European League Against Rheumatism (EULAR) classification criteria for rheumatoid arthritis http://www.rheumatology.org/practice/clinical/classification/ra/ra_2010.asp (7, 8).
has been approved by the American College of Rheumatology (ACR) Board of Directors as Provisional. This signifies that the criteria set has been quantitatively validated using patient data, but it has not undergone validation based on an external data set. All ACR-approved criteria sets are expected to undergo intermittent updates.