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

@Webdog I hear you! I have been waiting and waiting for these pages... I am glad you think they are an improvement.

 

My ongoing frustration is that the Information for Healthcare Providers states primary care doctors can create an effective treatment plan, but really doesn't provide any specific guidance on how to do so. Primary care docs have not been trained on this disease, so how can they create an effective treatment plan?

Not to mention, there are no FDA approved treatments.

I can take a motorcycle to a truck repair shop and simply ask them to fix it. But will they do more harm than good?

I'm not sure what the CDC means by "expertise" and "collaboration with clinical specialists". Do they mean neurologists and rheumatologists, or do they mean ME/CFS specialists like Montoya and Kaufman?

 

Great line.

 

A snippet worth sharing.

 

Overall, looks like an improvement, and much to like about this update. Whilst it’s scant on clinical guidance, I’m happy with “first do not harm” for now, and the treatment section makes it clear that the goal is to not trigger PEM, and any activity increases must be done so cautiously. This is also good (bold in original):

My major concern is that the prognosis section makes improvement and recovery sound far likely than they are, which has a direct impact on people trying to access disability services, as government agencies will likely read that as the condition being “non-permanent”.

 

This post has been merged from a new thread. It links to an article in Outbreak News.

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): CDC releases updated website

I just wanted to post this article here. I hope mainstream media pickes this story up.

 

Done:
https://twitter.com/user/status/1017754466148409346



If you or anyone else wants to make any more, there's a good chance I'd share them also

 

I've got a little tear in my eye.

 

For me, the worst content on the CDC website is the section called "Voice of the Patient".

https://www.cdc.gov/me-cfs/patient-stories/index.html

Apart from the fictional tone of the patient narratives, it appears they were written to influence readers' interpretations of ME/CFS in a way that may undermine the message that ME/CFS is a "disabling and complex illness" as described on the Home page.

First we have Andrew, a physician who has been required to modify his practice by seeing patients for two 3-hour sessions per day, separated by a rest period. He states that 75 percent of patients (presumably like him) have a mild to moderate form.

"I learned that I had to cut down on my practice hours in order to manage my own illness better and I never again was able to practice full time. I learned that post-exertional malaise (PEM) required me to pace myself. I would see patients for 3 hours in the morning and then rest, and see patients again for 3 hours in the afternoon."

"What do I want people to know about this illness? I think there is a spectrum of ME/CFS. I have read that some people (25%) have a very severe form and are bed-bound or house-bound, but more people (75%) may have a mild to moderate form", and that those with a "less severe form can still work and participate in selected activities."

The wording of this profile could be interpreted to mean 75% of patients are able to work, when in fact the reverse is true. Here's Dr. Andrew's story:

https://www.cdc.gov/me-cfs/patient-stories/stories-andrew.html

Second is Ann, a former international athlete (whatever that means) going to grad school. Lucky Ann . . . once she was diagnosed and started treatments (?), her symptoms began to improve. She describes the illness as "cyclical", with terminology that's new to me. Apparently, the four phases are: crisis, emerging, stabilization and integration.

Ann's careful management allowed her to complete her graduate program, work part-time, and start a family. Her final words are motivational: "ME/CFS has taken so much from me, but it also forced me to get really clear about what matters most in my life, and taught me how to let go of the rest. And, most importantly, it has helped me find a sense of self-worth, beauty, and meaning beyond my physical capabilities."

Yeah, right! Pardon me if I don't share this sentiment.

Read more about Ann here: https://www.cdc.gov/me-cfs/patient-stories/stories-ann.html

Finally we have Liz, whose situation is more typical. She hasn't recovered in 27 years with ME. Unfortunately, the CDC found a way to make Liz' story a joke:

"Some mornings, my mother will take one look at me and say, “You’ve gotta quit drinking.” As if I’m suffering from a hangover. I probably look hungover, and I feel hungover. But I don’t drink. It’s not a hangover, it’s ME/CFS. My mother knows this of course, but she also knows that the drinking remark will make me laugh. Sometimes you’ve just got to laugh about it or else you’ll go crazy."

https://www.cdc.gov/me-cfs/patient-stories/stories-liz.html

Each patient story ends with the following, which leads me to ask . . . Why bother even posting these profiles?

"Disclaimer: The opinions and conclusions on this web page are those of the patients and other contributors, and do not necessarily represent the official position of the Centers for Disease Control and Prevention (CDC). The names of some contributors have been changed to protect their privacy."

 

the press release for the update is quite good https://www.cdc.gov/media/releases/2018/a0712-new-website-me-cfs.html

 

Seems like this is good news (although I'm disappointed in anything that doesn't explicitly put the boot into PACE).

 

Sounds like crisis management, maybe? Some paradigm she might've known before she got sick.

 

I was not keen on the voice of patient section, in fact I'm sick to death of this attitude. It is probably a bit better but there is something that makes it sound a bit like a' light 'form of disease. It's the way people treat us. I also feel that the same attitude is present in Dr Faith newton's piece on children with ME. She remarks that one never knows if ones child will be going to school the next day. One knows damn well that they won't if they are on s vere spectrum. Nothing about the suffering, the horrendous suffering that a child goes through and that you cannot alleviate in any way. She says that there is a 88percent reco ery or near recovery in young people. Can anyone direct me to where this stat came from. I feel this has too much of the' light'
Touch about it. I haven't read it all but haven't found anything that gets across how this illness destroys lives, causes horrendous suffering and often almost complete isolation by its very nature. I wanted the positive feelings when I dipped into this report, I really did. But it is not enough and reading it will not make a major difference in medic circles. It is better than what we had from CDC. It could have been much better. It should have been a lot better than it is. I feel as if I have been fed some crumbs. And I have been waiting a long long time.

 

In Denmark and Germany, that's where they'll be.

 

Bang on, agree totally.

 

@Starlight - I understand having waited a LONG time for even this much and wanting it to be better than it is.
I am not sure where Faith Newton gets the 88% recovery rate for young people that she touts. (Possibly Crawley?)
The big question for me with anything touting recovery is the definition of "recovery"!
For instance, if it is being used to indicate any degree of improvement, many patients might have even minute improvements that would then "qualify" as recovery.
HOWEVER, if "recovery" is being used to indicate a return to premorbid or age-appropriate level of function, few patients would qualify.
Also, in the case of young people, how accurately can they remember pre-illness level of cognitive and physical function?

 

I'm looking forward to hearing what ME Action thinks of it

 

Miriam Tucker covers the CDC "Information for Healthcare Providers" changes (free Medscape account required).

CDC Launches New ME/CFS Guidance for Clinicians
https://www.medscape.com/viewarticle/899316