Discussion in 'General ME/CFS News' started by Ember, May 16, 2012.
Link to Primer
I'd really like to know what people think of this?
Still reading it. Might take awhile. Doing it in short bursts.
There is another thread on this I posted in the treatment section. I think this one started first though.
Here's a response, Jo, posted first on Facebook with an invitation to "share" it, copy and paste it or whatever:"
I printed out the article ME/CFS A Primer for Clinical Practioners. I also read the last sentence of the dis-claimer which reads: The recommendations contained in any part of this primer do not indicate an exclusive course of treatment or course of action. Nothing contained in this primer should serve as a subsitute for the medical judgement of a treating provider.
I don't want to rain on this astounding effort as I have not read the "Primer" yet. I do how ever want to highlight the real reason our non ME CFS Doctors need primers. Discrimination! The CDC and the Insurance Industry have created 35+ years of mis-information. Until some recognized Authority blows the lid off of this War on millions of Americans with ME CFS we will all be carrying our Primers for Clinical Practioners to Doctors who don't have the time or patience to read them because of the prejudice they bear.
The ME/CFS A Primer for Clinical Practioners is an important step and I look forward to reading it.
The ME/CFS Primer has taken the important step of including a “user-friendly diagnostic worksheet utilizing the Canadian Consensus Criteria” almost a decade after the publication of the CCC. The ME-ICC was published almost a year ago. What important step can we anticipate in 2020?
While the Canadian Consensus and ICC are both good starting points in the sense that they originated from experienced ME/CFS researchers and doctors, neither have been tested (nor used much yet ) in studies. Realize that in other areas of medicine, diagnostic and case definitions are tested before or soon after they are released. So first off, there is no well-tested definition of ME or CFS in existence. (I count Fukuda, Oxford, and other others as well.) Feeling in favor of one or another definition is an emotion or gut instinct but science requires testing beyond theories, ideas, or observations.
Secondly, if one compares the ICC and CCC, you will find that many of the same people were involved in both documents and that both criteria have mostly the same symptoms, with both emphasizing PEM/ PENE. The difference comes for example in that some symptoms are classified under different categories.
Last, if the Primer had been worked on over the last 2 years, the ICC came out only in August of 2011, which means authors likely did not have time to consider the ICC.
I don't know the exact thinking of why one criteria was chosen over another but this would be my thinking. (I also don't know why the ICC was produced since it is very similar to the CCC.)
I am unable to give it a detailed read. But here are some impressions.
1. It does a good job of countering common misunderstandings. It does this by offering model of illness process, mentioning a sprinkling of positive studies, offering a method to differentiate ME/CFS from depression and anxiety, and discrediting CBT/GET. One thing that worries me, though, is they list major depressive disorders (emphasis on "major") as possibly exclusionary. I can see depression getting so bad as to be completely debilitating, but this still makes me nervous.
2. They use the CCC. I would prefer the ICC, but Peterson (elsewhere) pointed out that the ICC is still being vetted. So the CCC seems like the way to go.
3. The treatment section is disappointing. Not that we have some really good treatments out there. But they could have presented some of the experimental treatment models. What I don't know is if this would have turned doctors against the primer. It may be that they have to stick to non-experimental for whatever reasons. But they could have added an appendix of a few experimental models. For example, Enlander has written and outline of his basic treatment method.
4. I can't really comment on testing. I don't know enough. But I was disappointed not to see a section explaining that as health goes up and down, so can the tests. And that non-stressed tests are often unrevealing. But if I overlooked this section, please let me know.
5. It has no pointer to additional readings.
6. The exercise section is sane enough, but they didn't integrate enough information about how to avoid PEM/PESE.
7. It's nice that they covered implications for surgery.
I would be happy if my doctor read this. I really don't think this is bad. And it's better than most stuff out there. Also, more up to date than the CCC. But a bit disappointing in it's depth.
I've read the Primer, and think it's generally good. It has a good overview of what is known about the pathophysiology and a good general approach. I like the section about CBT, which refers to Tom Kindlon's review "Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behav-ioural Therapy in Myalgic Encephalomyeli-tis/Chronic Fatigue Syndrome" (reference 83):
"5:7 Cognitive Behavioral Therapy (CBT)
CBT is a much publicized and debated psychother-apeutic 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 in-cludes 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 con-troversy surrounding its application in ME/CFS is presented elsewhere. 82,83"
There is also good information about PEM and one of the most interesting research areas within ME/CFS, the impaired aerobic metabolism shown in the repeat exercise test studies (Van Ness/Snell and others):
"The type of fatigue that is a core feature of ME/CFS is post-exertional malaise (PEM). PEM is the exac-erbation of fatigue and other symptoms (e.g., cog-nitive difficulties, sore throat, insomnia) following minimal physical or mental activity that can persist for hours, days or even weeks. PEM may be related to abnormal energy metabolism.
Energy for physical activities is produced through two physiological systems: (1) Anaerobic metabolism is the predominant metabolic pathway during the first 90 seconds of exercise; (2) The aerobic/oxidative system is the primary source of ener-gy during physical activities lasting longer than 90 seconds.
Because most daily physical activities exceed 90 seconds, the aerobic system is typically utilized to produce the energy-releasing nucleotide, adeno-sine triphosphate (ATP) at a steady rate in order to perform activities of daily living. In patients with ME/CFS, aerobic metabolism may be im-paired. 23,57,58 Thus, any physical exertion exceeding 90 seconds may utilize a dysfunctional aerobic system, which leads to increased reliance on anaerobic metabolism. This imbalance may be linked to the prolonged symptoms and functional deficits associated with PEM."
One part had me really surprised, though, in the section on exercise. First, there is good information about the need of pacing and to stay within one's envelope. Then, there are Exercise recommendations, first for severely ill patients:
"Severely ill patients (functional capacity rating 1-3; Appendix C). Homebound and bedbound patients may benefit from in-home services that provide assisted range-of-motion and strengthening exercises. Exercise lying down should be advised when exercise standing or sitting is poorly tolerated. Initially, interval training exercise should begin with gentle stretching to improve mobility utilizing in-tervals of 90 seconds or less. The patient should rest between intervals until complete recovery has occurred. Additional intervals can be added when the stretching exercises do not trigger post-exertional symptoms. Then, resistance training can begin (functional capacity rating 4-5) with elastic bands or light weights. As endurance improves, short-duration interval training such as leisurely-paced walking can be added."
I reacted to this, because I haven't heard of or been in touch with any severely ill patients who would be capable of doing exercise with elastic bands or weights without triggering major worsening of symptoms, not even after a carefully structured exercise program as described. In my expericence, these patients are usually struggling to just manage eating, drinking and basic hygiene. This bit implies that function will improve with time (and training) - and in my experience that is often not the case. What do you think?
All in all, though, a good Primer. Many thanks to the dedicated physicians and researchers who have been working with it. Also an excellent Foreword by Prof Komaroff.
Looking forward to hearing what the rest of you think about it!
In reply to a point in the commentary by George Mutt, post 5, where he has the opinion that it is not necessary to challenge the view that CFS is a psychiatric disorder. It is still necessary. The USA has resisted the worst of the psychiatric view, but not entirely. The old guard at the CDC would still be pushing it if they had remained. In the UK it is the dominant view, and the same for much of Europe. The average doctor appears to still think its valid too - they have not caught up on the science. Until the medical community catches up with the latest biomedical research then it is still necessary to counter the psychiatric view.
A problem with the primer is just that - its a primer. It does not go far enough. Its enough to update many doctors on the basics - which is a very much a good thing - but thats as far as it goes. It would be nice if a textbook length version could be created over the next several years so that more specialist treatment can be used. In that should be a discussion of the evidence on treatments suchs as antivirals. Alternatively produce small updates one at a time, topic by topic, until there is a library of documents. Such a library would make revising the information much easier too, as it could also be done topic by topic - books can be hard to coordinate and keep up to date, even e-books.
A problem that arises out of this is, of course, that the people we would like to write this are also the people in high demand to treat us, and often our researchers ... and we need research even more than doctor education at this point.
I like what I've been able to look through so far.
It's not a guide to experimental treatments, but it does mention things like antivirals, immune modulators, and rituximab, giving them credibility and opening room for discussions with treating physicians.
They stress the importance of staying within an energy envelope.
They mention the 25% of us who are bed bound or house bound, again lending credibility. I've had plenty of doctors tell me they didn't realize this illness could get this bad.
I like the tips about surgery, etc. too. Might help an anesthesiologist take concerns seriously.
In general, it seems to encompass many of the things that I would want my doctors to know, and might give credible backing to things that I would want to talk to them about anyway. I have a feeling they'll listen better to a group of other doctors than a patient, however well-informed. It gives me something official to point to, with the information collected in one place, and I like that.
All in all, I'm pleased with it, and will be trying to get it out to any physicians I can. I wish they would make something like this required reading for medical students. That kind of basic knowledge about the condition is long overdue.
Looking at this not from the point of view as a patient but as a clinician, I agree with some of what has already been said.
The Primer is directed at people outside the usual ME/CFS circles who do not have much knowledge about ME/CFS. Much of this will be new to them. As Alex mention, many clinicians still think ME/CFS is a psychological disorder -- 2011 CDC research found that 86% of healthcare workers think ME/CFS is wholly or partially a psychiatric disease.
Most guidelines, whether we're talking about diabetes, high blood pressure, cancer, etc., are aimed at the basic non-experimental diagnosis or treatment of a condition, not the newest not-yet-proven stuff out there. Many ME/CFS treatments people think are established are in fact not well-proven if you were to put them up against strict research standards applied to non-ME/CFS treatments. Also,for the treatments that are experimental, neither generalist or even the average specialist physicians may have access or feel comfortable using them so mentioning them seems reasonable to me but it doesn't seem reasonable to expect most physicians to give them. In fact, you don't want to be the first or 10th patient the doc is using the med on if possible. I've tried my share of treatments but I also know how much proof is or isn't behind them and that ideally is something an honest doc should discuss with you when it comes to any treatment.
I agree with about 85-90% of the Primer. There is room for improvement but I think this is a good first try.
Is this somewhere on the web? I'd like to show this to someone.
Please don't use colors on large chunks of text. Some of us use black backgrounds and have no idea what you've just posted.
I'm sure people will try to avoid it if they know it's a problem. In the meantime, you might try highlighting the "invisible" text with your mouse if you haven't already. That might let you read it.
I think the idea is progression - whether to add intervals, add resistance bands/weights, add activities - should only be based on what can be tolerated without symptoms. So if a person can only lie down and have someone else stretch their legs, then that's it. If the person can later tolerate moving their legs themselves, then they should try - but only if complete recovery occurs afterwards. It's my personal belief/experience that there are hard limits we simply cannot push past. For some people that might come with using resistance bands, and some people may never get that far. Someone who can only manage eating and hygiene won't be able to add resistance bands and still fully recover from the effort. Perhaps the paragraph you quoted is not worded clearly enough to emphasize the need for complete recovery.
These quotes from pages 20 and 21 of the manual are more along those lines:
"In contrast, the optimal amount of individualized exercise is usually well below standard recommendations for healthy individuals, avoids post-exertional symptoms, and promotes improvement."
"Exercise should also not take priority over activities of daily living."
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.
It depends on why they're bed bound. I was bed bound for a few weeks due to OI, but my threshold of activity hadn't really changed. So I did do a few easy leg lifts when I wasn't feeling worn out.
I actually would like to see something like this for patients. That's just as important as having something for clinicians. I would love a clear, simple, brief summary of everything we know so far without any of the BS. I really liked the summary of the known physiological signs of illness. Whenever I tell people about being sick, I have trouble summarizing it to them in a clear way, and for a long time I've wanted a brief summary of the things I can tell people that researchers have found so far. It's good adding that to my intuitive understanding such as "nothing in my body is able to work as it should"
I agree with the concerns about recommending even simple exercise. It is my opinion that we are so starved of meaning and purpose, that all our extra energy should go towards that. Lifting weights is meaningless energy consumption, which I find to be a terrible idea. If I have extra energy, I'd rather walk outside, or warm up all my meals for the day myself, or spend a bit less time in bed doing something that adds value to my life. Lifting bowls and pushing my wheelchair is just as good exercise as lifting weights.
So this sentence:
"Exercise should also not take priority over activities of daily living."
Should be expanded upon greatly.
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