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

CDC Page for ME/CFS

Take a look around each page. How does it look to everyone?

 

It seems pretty good. It seems to emphasize how much of a serious and disabling condition ME/CFS is throughout, and it even explicitly says it's a biological and not a psychologic condition in the "Pathophysiology and Etiology" section (which is in the presentation and clinical course part).

 

A couple of the links under Information for HealthCare Providers don't work for me, but it's likely me screwing it up. But this is what I want to see - what are they now saying to Healthcare providers that is different.

I wish they would just come out and say most pwME do not improve. They continue to equivocate and hedge. I think this does more damage than good.

Still, I think they are headed in the right direction.

 

I don't know if this part is new, but god how refreshing it is with something other than the biopsychosocial approach to ME patients!

Clinical Care of Patients with ME/CFS

- Helping patients get relief from symptoms and achieve improvement in quality of life are the main goals of treatment. In working toward these goals, it is important to prevent harm that can occur from triggering post-exertional malaise. It is also important to acknowledge the clinical significance of the condition and to validate the experience and concerns of patients and their loved ones. This acknowledgment often brings patients and families a sense of support and strengthens trust between patients and providers.

 

It looks fairly good all considered, although PEM needs to be described more in detail on the diagnosis page https://www.cdc.gov/me-cfs/healthcare-providers/diagnosis/approach-to-diagnosis.html

 

Additional Strategies for Living with ME/CFS

• Educating patients and their caregivers about ME/CFS. This can promote support and understanding.

• Encouraging patients to find enjoyable, low-effort activities to engage in with family or loved ones.

• Helping patients to develop effective coping skills to help ease worry, anger, hopelessness, or other feelings. This may include a referral to counseling or support groups if available and possible.

• Encouraging patients to consider using energy saving devices, which many patients have found to be helpful. For example, using a wheelchair to cover longer distances in grocery stores or enjoy family events or trips.

I like how they emphasise aids like wheelchair as useful and liberating tools. No warnings against illness-confirming-behaviour. They even think patients should be educated about ME.

Gosh, this is SO refreshing!

 

The "Clinical Care" section is so nonspecific.

But what is "good clinical care"? My healthcare provider says it is "anti-depressants, regular exercise, and supportive counseling" (for someone with no comorbid psych diagnosis). Other than the warnings about triggering PEM, I see nothing so far that would make my healthcare provider change its treatment policy.

Managed healthcare providers don't typically try unproven treatments. 100 million Americans are covered by managed health plans. I see nothing here that would make a provider want to try say low-dose naltrexone or antivirals.

The CDC emphasizes self-management, but If you click the "self-management link", it goes to an AHRQ page which says "Self management support includes the following:" "Making referrals to community-based resources, such as programs that help patients quit smoking or follow an exercise plan".

This is the specialist care my healthcare provider offered to me in a recent letter. A physical therapist and a psychiatrist. The CDC seems to support this is appropriate care.

On the plus side, it may no longer be acceptable for my healthcare provider to completely ignore pacing. Not one doctor has ever mentioned activity management or pacing to me.

 

Any odds that critiques will pretty much fall along party lines, ie, US residents will be harder on the revisions, UK and many other European countries and Canada more pleased?

This is hugely better than the BPS horror show, and it is an improvement over before, but still too much foot-dragging and namby-pamby-cannot-fully-commit speak, at least as I see it.

It reads conflicted.

I get the sense there are multiple lobby groups behind the scenes, perhaps some surprising ones.

 

A couple more comments on the Clinical Care section.

The CDC actually weakens the argument for patients to be able to see a ME/CFS specialist. It argues, as my own healthcare provider does, that "Primary care providers can develop effective treatment plans."

My past argument has been that my primary care doctor has no clue how to treat ME/CFS, so I should be allowed to see a ME/CFS specialist to create a treatment plan that my primary care would then implement. It looks like my argument has no CDC support.

This is a bolded in the original. This is close to my goal. I've always told doctors I want to improve functioning and quality of life. Symptom reduction is less important to me, except when symptoms significantly interfere with functioning and quality of life.

This sounds pretty good on the surface, so long as doctors understand that progress may not be achievable. In practice, healthcare providers strive for consistent uniform treatment which they roll out across the organization. Providers don't do well with nebulous "individualized treatment programs", unless one has very good insurance.

No mention of the 25% longterm homebound or bedbound and their needs and ability to interact with the healthcare system.

 

No mention of the 25% longterm homebound or bedbound and their inability to interact with the healthcare system. That is very sad, no acknowledgment of the sickest amongst us, just ignored.

 

I agree this is a missed opportunity to post this on their site as it is stated in the IOM Report.

 

I spoke too soon. Farther down on another page there is a severe section.

https://www.cdc.gov/me-cfs/healthca...atients-mecfs/severely-affected-patients.html

 

Yes, I think you are right. Although, I am "tickled pink" over the changes as I have had to deal with horrific managment of my disease for 40 years (and Fibro for 45) and I find this to be very helpful.

Also, I encourage everyone in the US to e-mail the CDC website information to their state's Dept. of Health Secretary. Start with this page: https://www.cdc.gov/me-cfs/healthcare-providers/index.html and let them know all the subtabs for "Information for Healthcare Providers" have been updated and you would like to see an ME/CFS page for their state's DoH reflect this information.

 

This is a pet peeve of mine. It implies that part of them really still believes positivity is the answer.

Or -- from another angle, I suppose -- it implies that doctors would rather keep patients in the dark in order to avoid witnessing and dealing with their distress.

I suspect that in the case of the average GP, they're telling themselves it's the first, when it's mostly the second.

 

Big entities like CDC get in trouble for recommending treatments for which there is little evidence -- and by "little evidence" I mean not a full-scale, double-blind, placebo-controlled study.

MORE BIOMED RESEARCH FUNDING PLS.

 

Major healthcare providers often won't touch treatments for which there isn't strong evidence. (Then again, they throw antidepressants at patients like candy.)

It would have been nice if the CDC would have incorporated more of the treatment recommendations from the recent expert clinician summit. Perhaps a mention of Low-Dose Naltrexone or antivirals?

Kaiser Permanente has a large research division, which often studies diseases that already have effective treatments. But when I try to get them to consider studying ME/CFS, they show zero interest.

 

Yes, yes they do.

 

@Webdog - fwiw - the lag time between CDC developing (any) material and it being approved and posted is really lengthy so while it would have been nice to have more of the recommendations from the clinician summit, we'd be waiting a lot longer for that material.....
We waited a long time for this and I hope it is (as folks are saying) an improvement on the previous material (haven't had a chance to read it yet).
That said, I think it is useful to gather input to submit to CDC on the positives and negatives and suggestions for improvement (such as the recommendations you mention). During either the CDC SEC call or the June CFSAC meeting I believe CDC said the site would be reviewed or updated(?) every year....

 

This document was already more than 6 months past the promised delivery date. But I suppose I shouldn't look a gift horse in the mouth... it is overall a vast improvement.