This. Is. Why.

I’m on the verge of tearing my hair out, and I suspect I’m not the only one. The American Academy of Family Physicians published a review article about CFS (paywall) on Monday, accompanied by a patient information sheet. From the very first sentence, this information sheet is a disaster. It packages harmful misinformation for family doctors to share with patients. Let’s take a look:

Chronic fatigue syndrome (CFS) is a disorder that causes you to be very tired.

NO! No it does not! A person with sleep apnea is tired. A nursing mother is tired. A perfectly healthy person studying for the bar exam is tired (ask me how I know). CFS does not make me tired. CFS causes prostration, a medical term that means a collapse from complete physical or mental exhaustion. Using the word “tired” is not only medically inaccurate, it falsely minimizes the severity of my disease and my experience.

People with CFS may have other symptoms, such as poor sleep, trouble with remembering things, pain, sore throat, tender lymph nodes, or headaches.

Can you spot what’s missing? Post-exertional malaise! The generally accepted hallmark symptom of this disease is not on the list. It is the first symptom on the Fukuda criteria list of accompanying symptoms. But it’s not listed here and not explained to the patient.

Not everyone with CFS has all of these symptoms.

I know hundreds of CFS patients. Every single one of us has experienced these symptoms for extended periods of time, if not daily, over the course of years. While it is technically correct that the Fukuda criteria do not require all of those symptoms, it is an oversimplification to simply say we don’t have all the symptoms. And of course all the other symptoms and overlapping conditions are not mentioned at all.

Childhood trauma (for example, physical or sexual abuse) may raise the risk of getting it.

I am aware of two studies that showed a higher prevalence of childhood trauma among CFS cases compared to healthy controls (this one and this one). Here’s the problem: childhood trauma may raise the risk of many disorders later in life. Without comparing the prevalence rate of trauma among other illness groups, there is no way to know if the association with CFS is unique. Are there studies comparing the incidence of childhood trauma among people who develop multiple sclerosis, rheumatoid arthritis, cancer, hepatitis, heart disease or  . . . oh, that’s right. Doing that kind of study in those illnesses might be offensive because those illnesses are real. But we can do those studies in CFS with no problem.

Two treatments can help with CFS: cognitive behavior therapy (CBT) and graded exercise therapy. With CBT, a therapist teaches you about how your thinking affects how you feel and act. With graded exercise therapy, you slowly increase your physical activity, which hopefully increases your function.

You know where this is going, right? Setting aside the arguments about whether CBT and GET studies actually show a benefit, and setting aside how this sort of statement plays right into the mental illness meme, let’s talk about GET. Will GET increase CFS patients’ functional ability? Maybe some patients, but it should be pursued with extreme caution and prejudice. As the work of the Pacific Fatigue Lab and my own exercise testing results show, the energy metabolism systems of CFS patients are severely impaired. We do not make or use energy, or recover from activity, the way other people (including other illness groups) do. Graded exercise must be undertaken very carefully because it takes very little activity to push a patient into a severe crash.

I shudder to think about how family doctors will use this information sheet, and what it will do to the patients who receive it. What is truly remarkable about it is that it bears only a passing resemblance to the full review article and the AAFP’s patient education page on CFS. But this watered down, oversimplified summary of misinformation about CFS will undoubtedly be used, and it is likely to make things worse for patients, not better.

So does anyone – journalists, doctors, policymakers, or other observers – wonder why the CFS Advisory Committee and patient advocates have been begging CDC to fully revise its website and remove the harmful content that filtered into this information sheet?

This is why.

Does anyone wonder why the CFSAC  recommended that the CDC remove its Toolkit from the CDC website?

This is why.

Does anyone wonder why an alliance of organizations and patients wrote a lengthy and heavily referenced position paper in support of that recommendation?

This is why.

Does anyone wonder why there was such vigorous disagreement at the CFSAC meeting about whether professional societies like the AAFP should be invited to participate in revising the CFS case definition?

THIS. IS. WHY.

 

 

Update November 2, 2012: Author Toni Bernhard published a great article about the AAFP patient information sheet.

Update October 31, 2012: I’ve also published a detailed analysis of the AAFP review article on CFS.

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30 Responses to This. Is. Why.

  1. Leela Play says:

    How can we counter this? Can we
    1. have medically articulate people send in letters on this review that will get published?
    2. send yet another multi-agency letter to this group – demanding their review be revised or deleted; explaining all that is incorrect – and ccing it to the CFSAC, CDC, Sebelius, Collins, and the presidential liaison person?
    3. Have the IACFSME write it’s own letter
    4. Can we get the CFSAC to write a letter?
    5. Can we get the ICCME to write as well?
    6. Have a patient’s petition sent to them?

  2. Kati D says:

    well done Jennie. Sharing.

  3. Tom Kindlon says:

    Thanks for that, Jennie.

    The two studies the CDC did looking at childhood trauma both used the (so-called) empiric criteria, covering 2.54% of the population (many of whom don’t appear to have CFS at all but simply depressive disorders).

    A big problem with such types of trials is recall bias: two people could have had the same experiences, but decades later answer questions differently on the issue. I think there are reasons this can be an issue in CFS: we have a lot of time to think, generally, especially with rest periods. Also our lives mightn’t be full in terms of activities outside the house each day, so we can reminisce about when our childhood/before we were ill more than healthy people might. I had a fairly/very carefree childhood but very minor things occasionally appear in my mind e.g. a neighbour complained to a friend and me about playing ball on our road (when we were pre-teens) – hardly the most traumatic experience. [Also, perhaps having pain may prompt one to remember bad memories?]

  4. a says:

    Way to go Jenni!

  5. If you subscribe to the notion that CFS is not M.E.–and I do, since CFS was an invented redefinition for a disease that already existed–then the things you quote do make perfect sense. You are expecting the CDC’s definition of CFS to be the definition of myalgic encephalomyelitis, and it is inot.

    CFS is a syndrome that causes extreme fatigue as its main symptom; post-exertional malaise is not required for diagnosis; people with CFS do not need to have all of those symptoms to be diagnosed; and for people thrown into the groups of CFS, in which an extremely high rate of patients actually have misdiagnosed mental illness, research has proven that CBT and GET lead to improvement.

    This is the CFS that the CDC describes; it is not M.E., in which muscle weakness is the main symptom, post-exertional muscle fatigue and neurological relapse are the hallmarks, you NEED a ton of specific symptoms to be diagnosed, and GET causes disease progression.

    CFS is just a group of misdiagnosed people. It’s not specific at all–everyone and their dog can be diagnosed with it–and this is why research is so varied and conflicting, and why you get papers like this being publicized by the CDC (who, by the way, admit that CFS and M.E. are different illnesses). THIS is why.

    • Jennie Spotila says:

      And that’s the danger in the proposal to invite groups like the AAFP to participate in a case definition meeting: the Reeves criteria could be entrenched in the study of this condition for decades to come because non-experts don’t understand the distinctive features of the ME subset.

  6. I concur that if post-exertion refractory fatigue is not in the criteria it is
    certainly not the illness I have had since 1983 or 1984. I just read
    Dr. David S. Bell’s book on Cellular Hypoxia and it is the best book
    about this illness I have read.
    The CDC tool kit talks about graded exercise and cognitive behavioral
    therapy which are mere psychological distractions from the physical
    nature of the illness. Graded exercise and CBT will work fine with
    the depressed who don’t have M.E. or post-exertional refractory
    fatigue but all they will do is pointlessly exhaust those of us with the
    illness Dr. Bell so well describes.

  7. Pingback: CDC needs to understand its role in promulgating misinformation about CFS « Speak Up About ME

  8. Kelly Latta says:

    @Tom Kindlon

    As always the definition is key. How is childhood trauma defined? Is it what the person says it is or is there a specific set of criteria that must be met.

  9. Amanda J says:

    A rainbow at night has it right “You are expecting the CDC’s definition of CFS to be the definition of myalgic encephalomyelitis, and it is not.” Advocating for CFS is like advocating for … a non-specific group of misdiagnosed people. They exist, and their suffering is real but it can be alleviated when the causes of their illnesses are discovered. What about ME?

    CAA only advocates for the CDC-defined CFS as if it is one condition and has never raised awareness about ME despite protests from patients and the resignation of one of their original founders Marc Iverson who cited the damaging name issue as a reason. Not one mention of ME by Ms Spotila and the CAA. NOT ONE SHRED OF ADVOCACY FOR ME IN 20 PLUS YEARS! THIS IS WHY.

  10. Kelly Latta says:

    Just the messenger here, but yes the role of childhood trauma is being investigated in many diseases including MS and HIV. This mostly falls under the thinking that stress impacts the immune system predisposing genetically vulnerable people to a disease. And there is evidence for this.

    For example, if psychological stress lowers the immune system are people more vulnerable to pathogens and possibly more severe infections? Also, childhood trauma isn’t just psychological, physical trauma has also been shown to impact immune system function as well.

    On the other hand all people contract diseases, people who have had childhood trauma, as well as people with mental illness for that matter, are not immune and contract all the same diseases that other people do.

    And many people who do not experience childhood trauma also contract diseases – including ME and CFS.

    It doesn’t however mean the resulting disease is psychological or that psychological factors are integral to the etiology. Neither association or predisposition are the same as causation.

    Here is a New York Times article along these lines: http://www.nytimes.com/2012/09/28/opinion/brooks-the-psych-approach.html?_r=0

    You might also want to look here for information about the ACES study that started these types of investigations: http://acestoohigh.com/

    Childhood abuse is a very serious issue and some of the connections are real. The primary problem is interpretation, not the theory.

    • Jennie Spotila says:

      I’m actually glad to hear some of these studies are being done. It makes sense for our experiences (childhood or not) to have long term effects on our bodies.

      The fact that correlations are being found in other conditions proves my point. There’s no significance to a higher rate of trauma among CFS patients if higher rates are also found in other disease groups. It is accurate to say that trauma may raise risk of many diseases. It is misleading to single out a correlation with CFS.

  11. Stephanie McDermott says:

    EXACTLY. Thank you Jennie!!!

  12. Christine says:

    Maybe recommendations, suggestions, asking etc. are not enough. Maybe it’s time for those high up on the ladder on official positions to _demand_ that the CDC gets in line and top breaking down what they trying to build up. Surely someone must have enough power to do so?

  13. Tom Kindlon says:

    @Kelly:
    The CDC study: “Early Adverse Experience and Risk for Chronic Fatigue Syndrome Results From a Population-Based Study” (Heim et al., 2006) is free at: http://archpsyc.jamanetwork.com/article.aspx?articleid=668231

    The CDC study: “Childhood trauma and risk for chronic fatigue syndrome: association with neuroendocrine dysfunction” (Heim et al., 2009) is free at:
    http://archpsyc.ama-assn.org/cgi/reprint/66/1/72.pdf

  14. Cort says:

    The more and more I think about it, the more and more its clear how massive an effect the CDC toolkit has hadon how most medical groups interpret ME/CFS. If you look at Mayo, WebMD and other sites..and then the tookit the commonalities are striking. Until that toolkit is changed and as long as the Primer and the CCC definitions stay stuck in the CFS ‘ghetto’, this is what we have to expect.

  15. Excellent piece Jennie. I wrote an article for Psychology Today that’s related to this that you may have seen called “Why Can’t Medical Science Figure Out Chronic Fatigue Syndrome?” Here’s the link:

    http://www.psychologytoday.com/blog/turning-straw-gold/201205/why-can-t-medical-science-figure-out-chronic-fatigue-syndrome

    Regarding the question of whether CFS and M.E. are different syndromes/illnesses, here’s my view on that. There are people who suffer from “chronic fatigue,” meaning that they have a condition that would respond to rest and other lifestyle changes. And then there are people who suffer from CFS, a very real illness. The people who distinguish CFS and M.E., in my opinion, are thinking of CFS as “chronic fatigue” and of M.E. as the illness, Chronic Fatigue Syndrome. This whole naming mess is very unfortunate and if my analysis is correct, it just adds to the confusion and misunderstanding about this serious illness whether you call it CFS or ME.

    • Jennie Spotila says:

      Yes, I think your article is spot on, Toni. I also think that CFS, as currently used, captures both our illness and chronic fatigue. It is a serious confounding factor in research. I think my illness is the same as what others call ME and I meet more than one criteria. But as the comments here show, patients disagree among themselves just as much as researchers do.

      It is long past time for a reexamination of the case definition and name, and this effort has to include all the stakeholders. Understanding of diseases evolves, and there is ample precedent for the evolution of case definitions. It needs to happen!

  16. @Toni Bernhard
    Hi Toni,

    You know I love you and your work, but I would have to disagree on this point. I do not think of “CFS” as chronic fatigue, I think of “CFS” exactly how the CDC defines it–a syndrome in which the focus of diagnosis IS based on unexplained fatigue, but which has many other symptoms, and like you said–no two cases are alike.

    The crux is that the definition is just too broad and anyone with a strange cluster of unexplained symptoms can and will be diagnosed with it. This is not the same as M.E., which is very specific and when properly defined is almost impossible to misdiagnose. Saying CFS/M.E. is like saying CFS/AIDS, in my opinion.

    I completely agree that people with CFS are all sick but with different things–I don’t think anyone can argue that away!–but chosing not to group M.E. into that spectrum is not just because I/we think “CFS” is the same as “chronic fatigue”–it’s because CFS is a broad diagnosis for what is probably dozens of complex subsets, while M.E. is a specific illness. :)

  17. cfsboston says:

    Stop naively herding around fueling government-funded research (an oxymoron), and start protesting (ACT-UP style).

    Stop posting their “research.” Stop following their “research.” Stop talking about it. Stop playing by their rules.

    We are the fuel to their machine. (well, not me). Civil disobedience is imperative.

    We are not dealing with nice, logical, rationale people –> IT WAS CREATED ILLOGICAL ON PURPOSE.

    Leverage CFS to the ME advantage. Stop trying to sever ME. Use the healthier CFS patients to do the ME legwork.

    CFS & ME needs a Political Action Committee (PAC). These illnesses are 100% political.

    I have sent over 30K+ pieces of mail over the last 9 years. I didn’t care if reps represented my zipcode. I mailed primary/secondary/trinary political offices. I mailed local, state, and federal officials. I mailed every mayor & health dept in every municipal. How do you think I got the White House to open an investigation??? I started mailing officials in other countries too. The politicians effin’ hate me, but squeaky wheels always get oiled. ;)

    I know how tremendously successful it’s been…for just me. I am too sick now….but I can only imagine what would happen if more people did the same. There are millions of us, and I even had my family stuffing envelopes.

    BUCK-THE-SYSTEM –> Stop fueling it.

    Revolt, resistence, and revolution are history’s only proven solutions.

  18. Excellent article! As a nurse with CFS and Sjogren’s Syndrome I often cringe at these watered down explanations of both diseases. They play into ignorance not the truth of the devastating impact these diseases have on our daily lives.

    Every place there are definitions of Sjogren’s they focus on dry eyes and dry mouth, not the pain, fatigue and life threatening complication of the disease. Who would take serious dry eyes as the main symptom of Sjogren’s? Thought… Use eye drops and move on. Not so easy!

    As chronically sick patients we need to educate and advocate. Unless we open ourselves and our mouths to this the ignorance will continue, diagnosis’ will continue to take years, and physicians will continue to under treat the life altering symptoms we suffer with. Funding for answers and cures will be low and take too long.

    Bravo Ton

  19. Kristina Henson says:

    I’m thinking along the same lines as @Leela Play (above). I think we could look at this situation as a HUGE opportunity for us to educate the AAFP. They have now opened the door and comments should be expected.

    Who will they believe/respect, who will they listen to, how can we change their mind or at least give them pause?

    – A well-written letter from the CFSAC, I would imagine, would carry some weight. Maybe we go through Eileen Holderman, even offer to help draft a letter if all the reps would sign it.

    – What if we patients write a collective letter to send to the leading doctors (Klimas, Peterson, Lapp, Koegelnik, etc.) asking each one of them to respond to the AAFP.

    – Is there an informative workshop coming up that we can ask that the Board of AAFP be invited – maybe we will even pay for their expenses? Unfortunately, the IACFS/ME is not until Spring of 2014……..

    – Maybe the CFSAC could ask them if they would like to be updated with the latest research and areas of discussion once a year. Maybe CFSAC could come up with an electronic document that could them be sent each year to many physician organizations.

    – I believe a letter from CFIDS Association may be well received

    – I’m a bit skeptical if letters from patients would make any difference, unfortunately

  20. Anne Boyd says:

    @Jennie Spotila
    One thing to notice about research attempting to connect childhood trauma to ME/CFS: It’s remarkably self-serving. It seems to exist primarily to reinforce the notion that ME/CFS is in whole or in part a psychological disease. After so many years of unsuccessfully trying to “prove” that ME/CFS is a disease of faulty thinking, it’s insulting as well as a waste of scarce research money to try and prop up a crumbling theory in this way.

    This line of thinking doesn’t contribute to progress toward better treatments and cures for those who are afflicted. And it’s no help for disease prevention. Complete prevention of *all* childhood trauma is not a realistic goal. We already have a humane interest and a public health interest in preventing child abuse; but of course no one can expect that all children can be raised without exposure to the human condition.

    I think there is no way to avoid recall bias in asking adults with a painful and debilitating disease about their childhood experiences. In fact psychology seeks nothing else *but* the bias – there is no objective measure of how “bad” any given childhood trauma might have been for the sufferer. Psychology wants to know about their subjective experience, and it seems reasonable to conclude that a critically ill adult might recall their past in a different light than the same person would if they were not chronically debilitated and in pain, participating in productive life with normal social contacts, etc.

    “Psychological theories of illness are a powerful means of placing the blame on the ill. Patients who have been instructed that they have, unwittingly, caused their disease are also being made to feel that they have deserved it.” – Susan Sontag, Illness as Metaphor

  21. Justin Reilly says:

    @Cort
    You are exactly right, Cort.

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  23. Maddy says:

    Thank you! Excellent ,from someone who suffers from CFS and Fibro .i need a print out of this to take to a couple of drs.

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