In this guest post, Mary Dimmock summarizes the latest updates to CDC’s ME/CFS website.
In early July, the Centers for Disease Control and Prevention (CDC) replaced its website for myalgic encephalomyelitis (ME), previously called chronic fatigue syndrome (CFS) and now ME/CFS by CDC. This new website, intended for the general public, is a significant improvement over the previous site. An update for health care providers is planned for the fall. Together, these could begin to change the medical misunderstanding and mistreatment that people with ME have had to endure. But CDC will need to do more – both on its website and in dissemination to the medical community – if ME patients are to get the clinical care they need and deserve.
Back Story
For at least a decade, patients, advocates, disease experts, and members of Health and Human Service’s (HHS) CFS Advisory Committee (CFSAC) have highlighted serious concerns with CDC’s CFS website. Inappropriate information included the disease description, the name, the recommended diagnostic criteria, suggestions of a psychogenic basis, and the treatment/management recommendations, which have included those for graded exercise and cognitive behavioral therapy (CBT) based on a psychogenic view of the disease.
The feedback resulted in some website changes. However, CDC did not remove the contentious CDC CFS Toolkit in spite of a June 2012 CFSAC recommendation to do so. Claims that child abuse was a risk factor remained, despite strong criticism of the methods used in the supporting study. CDC also continued to recommend CBT and graded exercise therapy (GET) as management approaches in its CFS Toolkit, in its continuing medical education (CMEs), and on its CFS website, directly supported in places by studies like the PACE trial.
In August 2015, following the release of the 2015 National Academy of Medicine (NAM, previously the Institute of Medicine or IOM) report, CFSAC issued a set of targeted recommendations for clinical education materials to clarify the physiological nature of ME, the range of symptoms, its differential diagnosis, the inappropriateness of CBT and GET, and the importance of clearly distinguishing between the overly broad Fukuda diagnostic criteria for CFS and the new criteria that the NAM had proposed.
Shortly after publication of the NAM report, the CDC archived the CFS Toolkit and removed the CME that had referenced PACE to support its recommendations for CBT and GET. Subsequently, CDC conducted a initiative in 2016 to get stakeholder input on a new website. Stakeholders included disease experts, patients, patient advocates, two medical education providers (UpToDate and Healthwise), and representatives of about a dozen medical associations. Each stakeholder provided input through one survey and a one-hour teleconference, followed by a one-day face-to-face meeting, during which participants reviewed the collated input.
The patient advocates involved in this initiative expanded upon recommendations made in the 2015 CFSAC report and provided extensive feedback on the issues with the existing CDC CFS website. Stakeholders did not see plans for the final website before it was released. Final decisions on the website were made by a steering committee comprised of CDC and other HHS staff.
Notably, in parallel with this initiative, journalist David Tuller of Berkeley published his extensive 2015 series on the PACE trial which led to a cascade of articles and letters by academics and others criticizing the trial conduct and its conclusions. These criticisms amplified the concerns being raised by patients in the stakeholder initiative.
What’s Good with CDC’s new Website?
The new CDC ME/CFS website incorporates a number of changes that address some of the most contentious issues. The most significant is that CDC no longer recommends CBT and GET on the site itself and no longer suggests that the debility of the disease is due to a patient’s beliefs, behavior, or deconditioning. Further, diagnosis focuses on hallmark symptoms such as post-exertional malaise (PEM). The non-specific Fukuda definition, which does not require these hallmark symptoms, has been removed. These are important because the combination of Fukuda and recommendations for CBT and GET have resulted in misdiagnosis and medical disbelief and mistreatment.
Other important updates include a change from the name “CFS” to “ME/CFS” and a more accurate representation, in both words and images, of the serious nature of the disease. The site also gives better information on prevalence, economic impact, loss of function, and that patients can be bedbound and sick for years. Finally, CDC removed statements about childhood trauma as a risk factor along with references to the Georgia study and related publications. These studies used the Reeves definition, which the 2015 NAM report had dismissed because it included an “overrepresentation of individuals with PTSD and depression.”
More Work is Needed
While the new website is better, further work is needed before the website is rolled out to health care providers. For instance, while more accurate, the descriptions of the disease and of PEM are still weak. The impact of cognitive impairment is not adequately described and important neurological symptoms are missing altogether. Information about the poor prognosis, the severity of the disease, and severely ill patients is woefully inadequate. As one severely ill patient observed, the website “sugar coats” the disease and he doubted any doctor would recognize severely ill ME patients from what is on the new website.
Diagnostically, CDC’s new website emphasizes PEM but then in some places makes PEM optional for a diagnosis of ME. The pediatric section doesn’t even mention PEM by name. This vagueness about the disease’s hallmark symptom will perpetuate the diagnostic ambiguity that exists today.
The treatments section is still inadequate and in places potentially harmful. Most noticeably, while individual sections are included for the treatment of a number of symptoms, the site does not have a section specific to the hallmark PEM. The discussion that is provided on managing PEM doesn’t mention PEM by name and doesn’t discuss energy impairment or the use of pacing as the key management tool. The recommendations for yoga and tai chi lack appropriate caution for severely ill patients and the generic recommendations for sleep hygiene (such as only using the bed for sleep and sex) are inappropriate and potentially harmful for those who may be bedbound or spend their days laying flat to avoid exacerbating their symptoms. Finally, while the website does not recommend CBT and GET, it inappropriately provides a link to the Alberta Guidelines for ME/CFS which still do.
What About Health Care Providers
While perhaps not as critical for the general public, health care providers need additional information on the multi-system biological pathologies, the potential complications, and the need for a strong differential diagnosis, especially for those conditions, such as primary psychiatric illness and somatoform illness, that have been conflated with ME. Health care providers also need specific guidance on the use of drugs to help manage ME symptoms and about ME-specific considerations for surgery, hospitalization, pregnancy, and immunization.
While CDC has removed recommendations for CBT and GET, CDC told David Tuller, “We continue to believe that exercise can be useful for some ME/CFS patients.” This is concerning as CDC has not stated the specific type of exercise, the specific benefit to be gained, the risks to patients at different levels of severity, or the evidence that supports those recommendations. To protect ME patients from the known risk of harm from exercise, any recommendations for exercise or activity must explicitly address each of these issues. Generic recommendations, such as those currently provided for sleep hygiene, must be avoided.
A full review of the CDC website is available here and has been sent to the CDC. To both protect people with ME and expedite their access to the care that they need, it is essential that CDC address these issues prior to releasing the health care providers update this fall. Further, to ensure accuracy, CDC must seek and incorporate feedback from a panel of established ME disease experts, such as those involved in its multi-site study, prior to this release of its health care provider update.
Beyond the Website
While not a website issue, CDC must also revise the material it provided for medical school curricula through the MedEd Portal. The video is simply dreadful, and both the video and the supplementary material still include Fukuda for diagnosis. Both must be revised or be removed.
CDC also must resolve the problems with its classification of this disease in the ICD-10-CM, which is used in medical records. Today, US medical providers use the term “CFS.” But CDC moved “CFS” out of the neurological chapter (where the World Health Organization placed it) and instead equated it to the symptom of chronic fatigue. This has had a negative impact on not only disease tracking but also on insurance reimbursement, which impacts patients’ access to care and doctors’ ability to treat patients. Doctors need to be appropriately reimbursed for the extended time spent caring for ME patients.
Finally, even if it were perfect, the CDC ME/CFS website is just that – a website. As the 2015 NAM report stated, the most significant problem is not lack of medical provider knowledge but rather the negative attitudes of medical providers toward ME. To make a difference in the care that patients receive, CDC will need to have a proactive dissemination plan to counter the widespread medical stigma, misinformation, and deep misunderstanding that have developed around ME/CFS in the last thirty years. CDC and its HHS partners must use their leadership position with the public and especially with the American medical community to proactively pave a new path to quality clinical care for people with ME.
Thank you for the update and detailed background.
I can’t help but think it’s the state we should have been at 20-25 years ago.
Thank you! Much needed assessment.
As I wrote on my blog, an education plan, dissemination plan, was part of the NAM (former IOM) recommendations.
Thank you, Mary, for a first-rate critique, which raises again the fundamental question–just why are these central national health institutions so slow/reluctant to implement change?
Thanks, Chris. And yes, it does raise that question – the medical institutions in general, not just the CDC, are painfully slow to correct what is so obviously wrong
Seems video is meant to change attitude and approach rather than give enough details to know what to do. More PR effort than informative.
Thank you, Mary, for your continued examination of CDC practices and publications, including their newly revised website. Question: Did you get a response to your much larger analysis that you sent directly to the CDC?
I do differ with your interpretation of whether or not they got rid of GET and CBT. With an easily accessible link to the Alberta guidelines (and why Canadian guidelines??) with that discussion of GET and CBT, both are still on the CDC website, period. (Just had to get them in there, didn’t they?)
This website is better than the last, but since the last got an F in my grading system, this one only gets a C-. Much work to be done to be accurate and truly educational for the public, patients, and medical professionals. But it won’t be.
Hi Billie
I did not ask for a response when I first shared the review as I knew I would be updating it with additional input from patient advocates. But when I sent in the updated review today, I asked for feedback on whether they would incorporate this feedback before the health care provider update was released updated and also asked whether disease experts would review the site before that release.
I look forward to reading whatever reply you get. Thanks again.
Thanks for this Mary, and for all that you do!
Thanks, Joe
At about 3:20, does the doctor mentioned having lab work done to screen out other *symptoms*? Maybe I misheard it, because that doesn’t make much sense to me.
I wasn’t very clear, I was referring to the video that this article mentions.
I don’t think the video is particularly impressive.
You are right, J.A.
That does say screen out other symptoms.
Mary,
Thank you for all your work an attention to this important issue. Was this revision considered “final” by CDC or are then still open to comments and subsequent further changes?
Chris Williams
Good question, Chris.
I think they know additional changes will be needed but its a question of when and what.
Today, I asked CDC if they plan on making additional changes to address the key issues laid out in the summary of the review and whether that would be done before the healthcare provider update is released.
To best serve patients and doctors, I think its important to get these updates made before CDC starts to disseminate the website.
Just terrific Mary! I know that the CDC was not interested in having any more reviews with stakeholders at the last CFSAC. I hope that mindset changes before the healthcare practitioner’s piece comes out.
Thanks, Kristina. Hopefully, this is possible
I note that UpToDate participated in recommending changes. Their own website on ME/CFS is truly awful. Hopefully someone will wake them up to make their own changes.
Thanks for this update and your hard work for us.
So much to still do, including getting that video changed.
Maybe we should make it mandatory for all health care providers and medical students to see Jen Brea’s film, “Unrest.”
And I do think that the slowness in revising and updating the CDC website, and all of the information that’s disseminated to health professionals that implies that the disease is of our making or is depression or comes from childhood trauma or is just chronic fatigue does have to do with aiding the insurance companies and the federal government in not providing disability benefits and medical care.
It’s taken a virtual storm of advocacy to move the CDC and doctors’ attitudes, and thanks to all advocates. And it will take even more to move the needle further to where it should be.
You are one of the best fighters for us, and thank you so much.
Thank you so much Mary. As always, wonderful work and so comprehensive.
Looking at the website and all, while feeling mostly positive, it took me a while to get to the video. My word! It’s hard to understand how one could make such a horrible training tool. Where is PEM, the hallmark marker, the Primers? and so on
This video is making me crazy, and I need to do something with this. Can you suggest useful actions I (and maybe others) could take, to get this rescinded, find out who put the content together and who approved the final produce? Whatever is most useful?
All suggestions welcome.
Margaret – agree on the video. The work on this started at least 4 years ago before IOM and when Fukuda was still being used. But even at that, its quite awful. At this point, it needs to be pulled and then replaced with more appropriate material when that is available. If you submit CFSAC testimony, you could include a call for that to be done.
reminder – the next CFSAC meeting is Dec 13-14.
Hi Denise –
Thank you both for the suggestion to use CFSAC testimony and the reminder next meeting is coming right up.
Or you could write to Dr. Beth Unger, who has had a major, possibly controlling, role in these website changes: eru0@cdc.gov. That’s a zero, btw, not an alphabet O.
With respect to the Alberta Guideline, the problem lies not with the Guideline itself, but rather with the Summary. Unfortunately, how many physicians will take the time to read the former (34 pages) when the latter (4 pages) is available?
The Summary includes graded exercise under Suggested Management with only a mild caution regarding the need for careful monitoring. In contrast, the Guideline (starting on page 12) provides considerable detail, and tells a very different story. For example:
“There is now an extensive literature showing that many of the assumptions underlying the use of CBT and GET in ME/CFS are incorrect for some or even most patients with ME/CFS. ”
” . . . the patient selection for the CBT/GET trials that form the bulk of the “evidence” for their effectiveness used the Oxford criteria despite the obvious shortcomings as discussed. These criteria lack specificity and allow many psychiatric patients to be misdiagnosed with ME/CFS.”
“. . . although the authors of a recent meta-analysis conclude that there is “no evidence suggesting that exercise therapy may worsen” outcomes, data not included in this systematic review suggest otherwise.”
“In summary, all patients with ME/CFS have post exertional malaise (PEM) which limits the ability to exercise. No study of CBT and/or GET has measured post exertional malaise (PEM).
Perhaps the easiest solution with respect to the CDC website is to request that the link to the Summary be removed, while leaving the link to the full Guideline.
Kalee
I agree with you that the full Alberta guideline is more nuanced than the summary. And it contains some very useful discussion that highlights the problems with the field, with Fukuda and with the IOM criteria that are important.
But my concern is that healthcare providers wont read all of that and could still zero in on recommendations like “Using both interventions is possible by incorporating pacing within a graded exercise regimen.” I think these kinds of statements reinforce the faulty concepts about ME that pervade the medical community.
A great review….as you say the disease and how it actually impacts on patients is sugar coated.
Huge omissions with the heart rate abnormalities after exertion left off and the use of exercise assessments, CPET tests, 6-minute walking tests, metabolic exercise tests to fat/carb cross over ie not to exhaustion.
The std sleep stuff is so not right for the disease…when activity = increased insomnia and wired but tired…..
No mention of food, and chemical intolerances- can be identified by heart rate pacing….
Nothing on staying under your anaerobic threshold. Nothing on the fact that too much exertion results in a LOW heart rate – ie as per over trained athletes… Tx for your work….
Thanks for this, Manfred. You make some great points
Thanks for this, Manfred. You make some great points
This so good. Thank you very much.
I am so profoundly grateful for the work you are doing that benefits us all. Thank you for your dedication, perseverance, intelligence and generosity of spirit in slaying the falsehoods (and perveyors of falsehoods) that have caused such suffering and misunderstanding for so long. May your successes multiply exponentially.
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