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ME/CFS Primer for Clinical Practitioners

Ember

Senior Member
Messages
2,115
Date: 5/15/2012
http://www.iacfsme.org/
Link to Primer

Dear Members, Colleagues and All who are interested in Chronic Fatigue Syndrome,

On behalf of the board of directors of the International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (IACFS/ME), I am pleased to announce the release of the ME/CFS Primer for Clinical Practitioners. (ME/CFS and CFS/ME are equivalent terms.) The goal of the Primer is to provide the information necessary for clinicians to understand, diagnose, and manage the symptoms of ME/CFS. The text was developed over two years by the 11-member Primer Committee and externally reviewed by a number of international ME/CFS specialists and advocates.

Highlights of the Primer include:
  • A summary of the pathophysiological effects of ME/CFS to date
  • A user-friendly diagnostic worksheet utilizing the Canadian Consensus Criteria
  • Straightforward treatment suggestions covering an array of ME/CFS symptoms
  • Emphasis on post-exertional malaise and activity management
  • Sections on special populations/ problems (e.g. severely affected, pediatric ME/CFS, pregnancy)
The full Primer document is available on the IACFS/ME website (Link to Primer)in a printer-friendly format with a requested donation of $15 to help continue the work of IACFS/ME. We hope you find the Primer to be a useful adjunct to your practice and a worthy companion to your reference library.

With best regards,

Fred
Fred Friedberg, PhD
Chairperson
Primer Committee

President
IACFS/ME
 

Ember

Senior Member
Messages
2,115
I'd really like to know what people think of this?
Jo

Here's a response, Jo, posted first on Facebook with an invitation to "share" it, copy and paste it or whatever:"
How the IACFSME could be updated to help doctors and patients
by George Mutt on Thursday, May 17, 2012 at 11:09am​
Maybe it's rocket science, maybe it's the fact that the folks that are trying so hard to help us aren't sick, maybe it's that those of us who are sick don't have Ph.D's; whatever the problem, there just seems to be a huge disconnect between doctors, researchers and patients in the ME community.​
Now first I want to give kudo's where kudo's are due. The recently published IACFSME primer for doctors does a good job at describing many aspects of the illness. A truly lovely job, in fact it sounds exactly like what any patient would say to their doctor. I have a sneaking suspicion that after hearing the same thing over and over for 30 years, many of the authors of this primer could quote this stuff in their sleep.The descriptions are one of the best parts of this primer. They echo the patient and are validated by expert physicians. This creates acceptance with our carer's and clinicians and that's a good thing!​
The failure seems to come in recognizing the information for what it is and then translating that information into concrete information that can be used by clinicians to alleviate the suffering of the patients. Now I know you're thinking "well, they don't really know what's wrong, they can't fix it cause they don't understand it". Ima gonna call bullshit here.They don't know the exact mechanism of cancer but they can treat it. They don't know the exact mechanism of AIDS but they can treat it, an MS and many other illnesses. How you approach an illness is how it will be treated. ME is about a system failure and they system has parts that can be treated.​
Think about ME like a 20 layer cake. Each layer is a different biological illness, each illness is known and each of those biological illnesses have treatments and or management systems that already exist. Now if each layer of your cake is 2 inches high, meaning it's untreated and you cut your self a wedge of cake you're gonna choke trying to get 40 inches of cake down your gullet. But if you could reduce those cake layers to 1/2 and inch or 1/4 of an inch then you can get through the cake a not die trying to eat it. (grins) So presenting the layers (which is done in this document) in a way that breaks each one down as being fixable (which is not done in this document) would help our doctors get off their little baker butts and reduce some of our layers to manageable proportions.​
Now it's a fact that doctors like to fix people and they get just plain bitchy when they can't fix people; so why not write a primer that's positive, provides good quality work sheets for patients and doctors, and breaks things down and present's them in a fixable manner?​
For instance if you got:
This problem Apply this fix
PEM pacing (Dr. Bells work sheets are good for this)​
PENE Holter monitoring and pacing along with anti inflammatory meds​
Sleep problems Sleep hygiene work sheets, day pacing, sleep medications​
Energy production Testing for ATP/mito function, check vitamin levels and supplement where appropriate​
POTS (or other associated) Testing, medication, saline infusions​
Pain Pain medications, meditation practices, anti inflammatory meds​
Immune dysfunction Testing and antivirial/antibiotic medications in short courses as needed​
(the above seems to freak some docs out to even talk about it so a little push would help!)​
Allergies Complete testing so the patient knows what to avoid​
Medication allergies Make sure the information is with the patient always!​
Food allergies/intolerance Work with patient to find out if a rotation diet or complete elimination is warranted​
Vitamin deficiencies Testing on a yearly basis and supplementation.​
Gastrointestinal problems Endo and Colonoscopys, work with patient on food allergies to reduce diverticulitis and any overgrowth's of bacteria or yeasts.. . . . . . and much much more!​
Anyway you get the picture. I could go on to add each item that any good doctor will find and what can be done about it. A few of us have good doctors that take this approach but for the rest of us who have average doctors they really need it spelled out to them. With little check boxes and maybe a cookie.​
The point is that each of these biological problems carries with it a measure of fatigue. The fatigue is the result of a body working flat out to keep you alive and kickin' The fatigue isn't some slippery mystery that must first be found before we can go aha! That's the main culprit now I can help you with the rest of the stuff. While working with each one of these is won't get you near a hundred percent and for some might not get you back to 50%, it can ease the burden. And really not having to fight tooth and nail for the doctor to consider every little thing would give me enough energy to paint a cruise ship (over time, gotta pace ya know, grins) Most importantly having a well written primer for physicians that lays these things out matter a fact without all the "well, we don't really know, we're not really sure, oh you can't really do anything about this and that and probably not about that either" (snort) That kind of language confuses the doctor and leaves the patient to have to use way more energy than necessary just to get basic care.​
It's the language stupid!​
How this illness is approached by the experts sets the tone for how it's approached by the rest of the clinical world and this primer sounds like it was written by grad student's who know they didn't do their homework and expect to get called on the carpet at any moment. This primer seems to be fighting the stigma of CFS from the 90's as an affective disorder that's made up of freaked out people who can't handle living in the world and so they are just going to lie here and be miserable. Get over it all ready and move on! This is not 1994, this is 2012 and we are dealing with a patient population that is having a biological breakdown not a mental breakdown. So loose the language and the argument as it's completely unnecessary.​
Last but not least I wish these guys would just take the plunge. It's ME, and they wrote a wonderful paper that describes ME called the ICC ME. Why isn't the current primer based on that document? Using PENE as a base for the diagnosis is a great way to slap the lazy doctors upside there collective heads and make them wake up and pay attention to the patients at least for a few moments. Until patients are sorted into boxes we will all be left behind because mixing creates ambiguous results. Research papers that get 50% results are meaningless while papers returning 80 or 90% results are quick to become conventional wisdom. Sooner or later the sorting is going to have to happen or we are all going to be stuck in limbo for another 30 years.​
So the IACFSME made an effort to create an doctor education packet. It gets a lot of the description right but presents it in a way that leaves both patients and doctors in doubt about what to do and how to approach treatment. Presenting the various biological aspects of the illness that can be treated as layers and providing information on appropriate testing and treatment options without the uncertainty is a must for their next effort. A little snazzy design work wouldn't hurt either and I know we have some awesome designers out there who might want to get involved. Loose the language about depression. It's not needed.Doctors know what depression is and can spot it and treat it. The term does not have to make every page in the primer! Do their homework on the most severely affected patients and no EXERCISE is not the answer! Exercise is for people who have more than enough energy to get through a day not people who are trying to survive. Finally take the plunge and use the ICC ME terminology and criteria, bring ME into the 21st century.​
Note: uh, I don't have a lot of "friends" so if you find any portion of this useful please feel free to "share" it, copy and paste it or whatever, oh, and I don't really give a pile of poop about credit.
 

Xandoff

Michael
Messages
302
Location
Northern Vermont
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.
 

Ember

Senior Member
Messages
2,115
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?
 

Hope123

Senior Member
Messages
1,266
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.)
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
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.
 

Anne

Senior Member
Messages
295
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!
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
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.

Bye, Alex
 

Sparrow

Senior Member
Messages
691
Location
Canada
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.
 

Hope123

Senior Member
Messages
1,266
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.
 
Messages
15,786
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.
 

Sparrow

Senior Member
Messages
691
Location
Canada
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.
 

jspotila

Senior Member
Messages
1,099
"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?

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."
 
Messages
15,786
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.

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.
 
Messages
15,786
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.

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.
 

Whit

Senior Member
Messages
397
Location
Bay Area
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.