CDC Posts NEW CONTENT on ME/CFS (July 12, 2018)

https://twitter.com/user/status/1017888074653675522

 

Thank you Miriam Tucker!

 

@MsUnderstood

I get the concern about the disclaimer. But I am wondering if this statement might allow more information to be posted on this site than the CDC review process would normally allow

Overall, this is an improvement but it needs improvement in the following areas as noted by others in this thread -

• PEM needs to be more specifically described with examples and more directly tied to energy metabolism impairment,
• The section on managing PEM with pacing and activity management is still too squishy and open to interpretation
• It doesnt include neurological impairment under pathology but it includes emotional trauma as a trigger of the disease. AFAIK, the evidence for that is tainted.
• Doesn't mention referral to immunologists, neurologists, and rheumatologists but instead focuses on rehabilition and mental health. Putts too much expectation on what GPS can and will do/know how to do.
• Prognosis overly optimistic, not realistic.
• Does not explicitly debunk CBT and GET or acknowledge the current disbelief and hostility of the medical community. If that's not done here, it will need to be done through some other awareness campaign directed at medical providers - ala the New Your State commissioner's letter.
• Does not explicitly state that some patients diagnosed as Fukuda CFS will not meet the IOM criteria
• Lacks information on special circumstances - surgery/anaesthesia, emergency room, pregnancy
• Should have a section on pediatric

 

There is a section on pediatric/childhood ME.

From that section:

Honestly the first and last paragraph contradict! Did they mean to remove last pgph and somehow forgot?

[Edit] Also, a lot of emphasis on "push-crash cycles" in the childrens' section that I don't feel like was present in other sections. I understand why someone at the CDC might not get that this is a little offensive, but it seems to support a narrative that the patient is at fault.

 

Yes, true but that section was intended for the general public, not for health care providers. I was referring to the need to a HCP page on pediatrics.

And about the current pediatrics section for the general public - there are a number of issues with that have previously been reported to them.

Edit: originally the pediatric pages did not mention PEM but they updated it in June and included a section on PEM

 

Ah, I see. Well, there does seem to be a factsheet for them, anyway: https://www.cdc.gov/me-cfs/me-cfs-children/factsheet-healthcare-professional.html

Haven't read through it yet tho.

 

Here's some of the article:

CDC Launches New ME/CFS Guidance for Clinicians
-----------------------------------------------

The Centers for Disease Control and Prevention (CDC) has posted extensive content on the agency website aimed at helping healthcare providers diagnose and care for patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

The multipage site

https://www.cdc.gov/me-cfs/healthcare-providers/

reviews the presentation and clinical course of the illness, which was previously called 'chronic fatigue syndrome' but is now known as ME/CFS.

The site also provides guidance on diagnosis, clinical care, and other aspects of the 'complex, chronic, debilitating disease.'

The update was prompted by the landmark evidence-based 2015 Institute of Medicine (IOM; now the National Academy of Medicine) report 'Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness,' Elizabeth Unger, PhD, MD, chief of the CDC's Chronic Viral Diseases Branch in Atlanta, Georgia, told Medscape Medical News. 'CDC recognizes and has established that this is an illness physicians need to diagnose, and they can do so by following the recommendations of the IOM. It is a complex illness, but the steps to making the diagnosis are clear, can be followed, and each patient needs to be approached very individually,' Unger said. And, she added, 'there are things that can be done to help patients with this illness, even if there aren't treatments that can cure it.'

Rest can be read by signing in here:

https://www.medscape.com/viewarticle/899316

 

One thing I have noticed in the US is that a lot of the knowledgeable and sympathetic physicians have encouraged exercise. I recall reading pieces by Lapp, Bateman, Klimas and Susan Levine encouraging exercise. I have also heard that Komaroff and Natelson have encouraged people to exercise. Possibly also Peter Rowe. With that background, it increases the chances the CDC will mention it.

 

I agree. But the problem is that while its getting better, the CDC's site lacks the specificity that is needed and that you would expect one of the experts to provide - what kind of exercise, with what intensity, for which patients, with what risks (at each level of severity), and to what expected benefits. Even with the experts, this has been vaguer than it needs to be.

The CDC site now gives clearer warnings about risk of PEM and that standard exercise recommendations can be harmful which are good. But the site could for instance be read as suggesting the only problem is "vigorous" aerobic exercise. And statements like the following are also a problem to me because it sets an unrealistic expectation of what exercise can achieve - not a cure but normal levels of activity

"Expectations need to be managed, as exercise cannot be expected to be a cure. However, improved function is a long-term goal of managing ME/CFS; tolerance of aerobic exercise and normal levels of activity is also a long-term goal that can be related to improved function, but should be pursued cautiously as described above."(bolding added)
​

IMO, the guidance needs to include e.g. the need to keep heart rate under the AT (which can be very low and very close to the resting heart rate), the types of exercise that address that, warnings for severely ill and those with OI, and the type and level of improvement that can be realistically expected. And to help doctors get it, the recommendations need to start with a discussion of aerobic energy metabolism impairment and the lowered anaerobic threshold (AT). Some of this is now included in the pathology section but it needs to be iterated here as well so they can understand the difference from what's been previously recommended about exercise

 

What they seem to fail to acknowledge is that many of us have a lot of 'exercise' that is essential every day, and the excessive amount that is often required, such as shopping. I have plants to water, food to cook, curtains to open and close, stairs to climb, etc., etc.

Already I exceed my body's capacity before I do something extreme like wash myself or my hair. The urges to exercise seem to assume that we don't have anything to do!

 

Great point. Activities of daily living can use up or exceed a patient's capacity

 

B/c they have no idea.

There are zero studies on what kind of exercise, with what intensity, for what patients w/what risks. W/current research, we can say that graded exercise definitely makes patients worse. We also could generally say "deconditioning is bad" -- as in, it worsens all conditions. Also enough evidence to say that many patients have no choice but to be deconditioned because for moderate/severe, even the level of activity to keep your muscles from atrophying can be too much. But there it ends. No double-blind, placebo-controlled, medium- or larger-sized studies that say much else about activity. (Please correct me if I'm wrong!)

No studies on maintenance of heart rate below aerobic threshold leading to positive outcome. Right? (Wish there were!)

 

I agree totally with last post. Im Sure most if not all of us overdo it if the feel good factor rolls in at all. Just by doing what we need to on a daily basis without any frills is for most of us overexertion. We need good guidance on not overextending, actual scientific help to do this. I despair at the idea that we are fearful of exercise without very good reasons. Most of us especially housebound and even bedbound overdo it with very basis things most days. The energy envelope is an ideal rarely reached. I can't remember if there is any recommendation for home assistance for us mention Ed. We need greater account taken of the actual realities of our dailylives than is done in the report.

 

Another snippet from the CDC Info for Heathcare Providers (bolding in original):

 

Have posted here to facilitate sharing:
https://twitter.com/user/status/1018229111691595778

 

Saying this stuff outright and so plainly... I've seen a lot of change in the short time since I was diagnosed.

 

Think this is their version of "minor, moderate, severe" -- it's really "very, very minor; minor; and moderate". Severe is still missing.

I feel this section is a wasted opportunity for patients to describe symptoms in depth, discuss what treatments have helped and harmed them personally. People would understand it was from the mouths of the patients and was not the CDC's explicit recommendation, but it could help clinicians understand better what the disease might 'look like' in clinic, and give them some avenues to explore.