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.