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

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?
CDC said:
Primary care providers can develop effective treatment plans. When expertise is available and accessible, these plans can sometimes be enhanced through collaboration with clinical specialists and a team of other health care professionals such as rehabilitation specialists, mental health professionals, and physical therapists.
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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?
 
The spectrum of ME/CFS can range from mild to severe. For example, patients mildly impaired by ME/CFS may be able—with careful planning and activity management—to keep a job or continue their education, participate in social and family activities, and attend to daily life. Those patients who are moderately impaired might, for example, have trouble maintaining a regular work schedule or standing and sitting for prolonged periods. Patients who are severely or very severely affected by ME/CFS include those who are completely wheelchair-dependent and house- or bed-bound for months or even years. Some primarily house-bound patients have increased symptoms after trips for healthcare or after performing daily tasks that healthy people take for granted, such as bathing, showering, and cooking meals. Those who are bed-bound might need assistance performing even these basic tasks.
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This acknowledgment [by clinicians of the reality and severity of ME/CFS] often brings patients and families a sense of support and strengthens trust between patients and providers.
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This is often referred to as activity management (also sometimes called pacing), and requires that patients learn to “listen to their bodies” to be aware of their individual exertional limits, aiming to remain as active as possible without exceeding them. Clinical experts have observed that this process requires “trial and error.”
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:thumbup:

Haven't read everything, but so far it is a big improvement overall, that should give us a fair bit of clout in dealing with clinicians, and welfare and insurance agencies. If we can get NICE on board as well, there will be nowhere left for the BPS cult to hide.
 
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):

While vigorous aerobic exercise can be beneficial for many chronic illnesses, patients with ME/CFS do not tolerate such exercise routines. Standard exercise recommendations for healthy people can be harmful for patients with ME/CFS.
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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”.

Prognosis

The percentage of ME/CFS patients who recover is not well-studied, but there is evidence and experience to indicate that patients benefit when diagnosis and management are timely and appropriate. Some patients return to full function. Some who improve continue to experience symptoms and do not achieve pre-illness levels of function, and many who improve continue to modify their activities to remain improved or symptom-free. Some do not improve or, in fact, worsen over time. Even though more studies are needed, most experts agree that children, including teenagers, with ME/CFS have a better chance of full or partial recovery than adults
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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."
 
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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.
 
Starlight said:
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.
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Bang on, agree totally.
 
Starlight said:
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.
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@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?
 
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
Medscape said:
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."

Although the information may be useful for all healthcare providers, Unger said primary care clinicians are the main focus. "We have tried to target our information to primary care because that's the entry point for most patients. Having a negative first encounter can dissuade patients from ever going back. We know from a lot of population-based surveys that a lot of patients have just given up and don't go at all," Unger said.
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Medscape said:
Asked to comment, ME/CFS clinical specialist Lucinda Bateman, MD, called the CDC site "a tremendous step forward," adding: "They've pushed the envelope really well, I think, and they've also been willing to link to other resources."

Bateman, who heads the Bateman Horne Center in Salt Lake City, Utah, has recently organized a coalition of clinicians that held a summit earlier this year and is now developing detailed ME/CFS management guidelines based in large part on expert clinical experience, given the current dearth of data.

She said she's heartened that the new CDC content reflects a more positive attitude about ME/CFS than the agency has put forth in the past. "They've really made an effort to send a different message to physicians…The new message is, use your intuition, use your good judgment, take care of your patient, and here are [some tools]. They really have the spirit of what we're trying to do in terms of diagnosis and care."
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