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

CDC said:
Some healthcare providers with expertise in ME/CFS refer their patients to an exercise physiologist who understands ME/CFS and uses an individualized and flexible approach to advancing activity levels. If exercise plans are not designed and executed carefully, patients may experience setbacks and serious deterioration in function and health.
A few weeks ago, I called my healthcare provider (Kaiser Permanente) and asked if they had an exercise physiologist experienced working with ME/CFS patients. I was told no.

I then asked if it was possible to get referred out to an exercise physiologist with ME/CFS experience and was told no.

Edit: I guess my ongoing question is where are these "healthcare providers with expertise in ME/CFS" to which the CDC is referring?
 
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A few weeks ago, I called my healthcare provider (Kaiser Permanente) and asked if they had an exercise physiologist experienced working with ME/CFS patients. I was told no.

I then asked if it was possible to get referred out to an exercise physiologist with ME/CFS experience and was told no.

Edit: I guess my ongoing question is where are these "healthcare providers with expertise in ME/CFS" to which the CDC is referring?

Consider approaching university sports sciences departments. They may have commercial tests for athletes. It's easy enough to adapt to a two-day CPET.
 
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!)

Of course you are right - there are no trials that spell this out. But that, especially in the face of the exercise is good medical narrative, is why its so important this section err on the side of caution and provide the information needed to help doctors decide what specific "exercise" they are going to recommend for ME in general and for specific patients. For instance, Workwell has provided some guidance on keeping HR below the AT and keeping duration short as noted above which is really helpful. This section is certainly better than the earlier material but it can and should be made more precise and clearer to better guide doctors.
 
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For instance, Workwell has provided some guidance on keeping HR below the AT and keeping duration short as noted above which is really helpful.

You and @Trish both mentioned Workwell, and you're right. They've done some excellent work in exercise science. VanNess et al. put together a really impressive exercise study in 2003 with over 100 patients: Subclassifying Chronic Fatigue Syndrome through Exercise Testing. I think CDC could have safely used that info, which says that about half of (Ramsay-dxed) patients are as exercise-impaired as people with chronic heart failure.

One thing I noticed at the Dysautonomia Conference is that the exercise physiologists there understood that there was a range of function and that activity could mean a lot of things. They talked about moderate/severe doing "pillow squeezes". Educating exercise physiologists who help patients with dysautonomia on how to help those with ME would be easier than starting from a group whose default position is that "vigorous exercise" is the answer.

Of course, I'm wary about discussing any kind of activity management plan beyond pacing for patients. It's a live wire.
 
I'm not going to link to avoid further tickling the dragon, but the CDC update was posted on the /r/medicine subreddit yesterday and it shows just how much work we have to do. The reaction was overwhelmingly hostile and comments accusing the CDC of bending to anti-science activists were the most upvoted, calling patients delusional for even thinking about the inevitable lawsuits for malpractice.

There was not a single positive comment. Comments from patients with sources were downvoted. The only sourced comment from a medical professional linked to the Cochrane review, which shows that as long as there is disinformation out there, it will be be used to further justify discrimination. The thread was removed by mods.

I'm not really surprised, although it's still shocking to watch how intense the contempt for us really is. It's beyond that they are not convinced that it's a disease, it's that they refuse to even hear about the possibility that they could have been wrong all along and would rather propose some conspiracy theory where the CDC, NIH, National Academy of Medicine, advisory groups and the hundreds of researchers and clinicians who participated in their drafting are all bowing to some imagined aggressive anti-science activism.

No doubt the published articles from Wessely's group about harassment did their job. It's unassailable dogma that this disease is not real and patients are aggressive psychos. No surprise the burden of proof is so arbitrarily high. There is so much opposition within medicine that even when health authorities finally catch up to research, most would rather believe the old guidelines made more sense and the new ones must be fake.

Sociologists are going to have decades of research puzzling over this. It almost feels personal, as if we aggrieved them personally.
 
I'm not going to link to avoid further tickling the dragon, but the CDC update was posted on the /r/medicine subreddit yesterday and it shows just how much work we have to do. The reaction was overwhelmingly hostile and comments accusing the CDC of bending to anti-science activists were the most upvoted, calling patients delusional for even thinking about the inevitable lawsuits for malpractice.

There was not a single positive comment. Comments from patients with sources were downvoted. The only sourced comment from a medical professional linked to the Cochrane review, which shows that as long as there is disinformation out there, it will be be used to further justify discrimination. The thread was removed by mods.

I'm not really surprised, although it's still shocking to watch how intense the contempt for us really is. It's beyond that they are not convinced that it's a disease, it's that they refuse to even hear about the possibility that they could have been wrong all along and would rather propose some conspiracy theory where the CDC, NIH, National Academy of Medicine, advisory groups and the hundreds of researchers and clinicians who participated in their drafting are all bowing to some imagined aggressive anti-science activism.

No doubt the published articles from Wessely's group about harassment did their job. It's unassailable dogma that this disease is not real and patients are aggressive psychos. No surprise the burden of proof is so arbitrarily high. There is so much opposition within medicine that even when health authorities finally catch up to research, most would rather believe the old guidelines made more sense and the new ones must be fake.

Sociologists are going to have decades of research puzzling over this. It almost feels personal, as if we aggrieved them personally.
Very disappointing... That's why I think (I have already mentioned this so sorry if I'm repeating myself) that we will only be vindicated when we have a treatment that those regular doctors can prescribe and see with their own eyes how we actually recover. Without treatment, I have very little faith that something will change.
Unambiguous diagnostic test would be a good step forward, of course. But it has to be bulletproof. I'm not too excited about the recent news regarding 84% accuracy of the metabolite test.
 
Consider approaching university sports sciences departments. They may have commercial tests for athletes. It's easy enough to adapt to a two-day CPET.
I understand there are excellent exercise physiologists for those paying out-of-pocket.

My healthcare provider has over 22,000 doctors, yet not a single "exercise physiologist who understands ME/CFS". This is the current state of medicine in the US.

I hope the CDC understands this.
 
A game to play is to read the CDC Info for Healthcare Providers and try to figure out which sections were written by Dr. Unger (CDC) and which were written by Dr. Bateman. This was obviously a compromise document, and as others have pointed out, at times can appear self-contradictory.

More of the "two steps forward, one step back" kind of progress we have been seeing lately with the CDC.
 
I'm not going to link to avoid further tickling the dragon, but the CDC update was posted on the /r/medicine subreddit yesterday and it shows just how much work we have to do

It's important to keep in mind that Reddit is a wretched hive of scum and villainy.

They represent, not the average human, but the average Devil's Advocate creeper who thinks that the humanity of marginalized 'others' is a debatable point. 'Not all X' standard disclaimer here, but some of the most disturbing, sociopathic comment threads I've ever seen are hosted on Reddit.

I don't think there's much to be gained from engaging there.

I also wish there was more historical understanding in medicine -- I'm pretty sure that the de-psychologization of other embodied illnesses has been welcomed in precisely the same way by laypersons.
 
A game to play is to read the CDC Info for Healthcare Providers and try to figure out which sections were written by Dr. Unger (CDC) and which were written by Dr. Bateman. This was obviously a compromise document, and as others have pointed out, at times can appear self-contradictory.

More of the "two steps forward, one step back" kind of progress we have been seeing lately with the CDC.
As I mentioned before, Bateman has recommended exercise and I have seen no evidence she has changed her view. For example, she felt it could be useful with weight loss. I’m not convinced.
 
It's important to keep in mind that Reddit is a wretched hive of scum and villainy.

They represent, not the average human, but the average Devil's Advocate creeper who thinks that the humanity of marginalized 'others' is a debatable point. 'Not all X' standard disclaimer here, but some of the most disturbing, sociopathic comment threads I've ever seen are hosted on Reddit.

I don't think there's much to be gained from engaging there.

I also wish there was more historical understanding in medicine -- I'm pretty sure that the de-psychologization of other embodied illnesses has been welcomed in precisely the same way by laypersons.

This was in a forum restricted to medical professionals and heavily moderated. Mostly physicians. This isn't the first time either. They do the same every time research updates get posted there or on other subreddits reserved to professionals. Still worth it because it's better to talk about it, but it's the same reaction every time.

I'm actually seeing it plainly that the discrimination from the general population stems largely from the even more pronounced contempt by medical professionals. General population comments about ME are largely dismissive, rarely actually cruel.

I have actually seen positive responses on other subreddits that have nothing to do with health or medicine. The odd comment from a medical professional on otherwise general population discussions are generally those that give people permission to be nasty. The more medical professionals there are on the discussion, the more vitriolic discussion gets. It's really something to watch.

I understand where that comes from, the idea that we are taking precious resources away from "real patients". But what I'm astounded at is the complete inability to consider for one second what it would mean for this denial of a serious disease to be wrong. Never enters their mind and it's not up for debate, they just know it's not real.

Ironically enough, there may be some later use for all those discussions about mass delusion because this is as close an example as you can get, that somehow tens of millions are faking the same disease and the WHO, NIH, NAM and hundreds of researchers and clinicians are duped by... something, whatever it is.
 
Ironically enough, there may be some later use for all those discussions about mass delusion because this is as close an example as you can get, that somehow tens of millions are faking the same disease
Some of the medical professionals I talk to remain absolutely certain ME/CFS is a mishmash of various syndromes, diseases and psychological disorders. That it's a disparate collection of tired, fatigued and depressed people. A wastebasket diagnosis.
 
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We can only hope that a biomarker will be a game changer....you would hope the younger doctors might be a bit more open minded. I've said it before but hospital terrifies me after my experience when I became ill initially. I have a cardiologist I see now, he is a gentleman but I feel he thinks I'm anxious, possibly a hypochondriac but he is respectful. Still I feel uncomfortable and paranoid each time I see him. I've sent him ICC etc...but I know he has never read a thing I've sent. I'm tempted to ring his secretary and book a 30 minute session for him to watch the recent Dr.Systrum video clip from Boston. I'd pay him to watch it. Maybe then he would take me seriously. Or at least I'd feel some sense of validation.
 
Of course you are right - there are no trials that spell this out. But that, especially in the face of the exercise is good medical narrative, is why its so important this section err on the side of caution and provide the information needed to help doctors decide what specific "exercise" they are going to recommend for ME in general and for specific patients. For instance, Workwell has provided some guidance on keeping HR below the AT and keeping duration short as noted above which is really helpful. This section is certainly better than the earlier material but it can and should be made more precise and clearer to better guide doctors.
The CDC have to be careful about promoting treatments that don't have evidence from clinical trials so I don't find it that surprising they might not be more specific. I don't believe there is evidence from clinical trials that this approach is safer, though theoretically it could be.

Edited to add:
Anaerobic exercise was tested in this trial and didn't do great, though I can't remember much with regard to safety:
Non-pharmacologic Interventions for CFS: A Randomized Trial
Leonard A. Jason Æ Susan Torres-Harding Æ Fred Friedberg Æ Katrina Corradi Æ
Mary Gloria Njoku Æ Julie Donalek Æ Nadia Reynolds Æ Molly Brown Æ
Bing Bing Weitner Æ Alfred Rademaker Æ Morris Papernik
J Clin Psychol Med Settings (2007) 14:275–296
DOI 10.1007/s10880-007-9090-7

Anaerobic Activity Therapy (ACT)

The ACT treatment focused on developing individualized, constructive and pleasurable activities accompanied by reinforcement of progress. Staci Stevens, an exercise physiologist, who has previously worked on similar interventions, supervised this condition.

In order to gain an assessment of flexibility and strength at both pre- and post-test, participants in all conditions completed the shoulder flexibility test, which measures the flexibility in the right and left shoulders. All participants also completed the sit and reach test, which is the most widely used measure of flexibility and a primary component of most physical fitness tests. The test is designed to measure the extensibility of the hamstring muscles and the lower back articulations by evaluating the maximal reach an individual can make in a seated position. This test has excellent test–retest and intra-rater reliability (Gabbe, Bennell, Wajswelner, & Finch, 2004). Finally, all participants completed the hand dynamometer, which measures a person’s grip strength and is a good measure of loss of work capacity (Chengalur, Smith, Nelson, & Sadoff, 1990). It is fast, easy to perform, and produces a reliable report that is simple to record (Innes, 1999). Information from these tests were helpful in guiding the therapists’ 13-session protocol, which is summarized below.

Sessions 1–3.

The first three sessions involved engaging participants in therapy and offering them a detailed treatment rationale. The intervention was described to participants as involving activity scheduling and progress assessments. The treatment plan involved three phases: engagement and education, exercise prescription and monitoring, and maintaining functional gains. Behavioral goals for the program were explained to the participants and included energy system education, redefining exercise, prescribing appropriate exercise, increasing selected daily physical activities, and improving quality of life. The participants were assisted in translating these principles to certain physical activities employed in daily living. Participants were shown the principle of specificity in training for achieving functional gains and educated about its integral role within the exercise prescription. After learning to acknowledge the reality of their symptoms, participants received an explanation regarding the benefits of the pragmatic rehabilitative approach as well as the exercise model. Exercise progression was also described at this time. Participants were informed about the importance of gradually increasing anaerobic activity levels, and were asked to complete a daily exercise diary. Participants were requested to identify any goals and/or problems that they were experiencing with regards to exercise compliance.

Sessions 4–7.

The self-monitoring diaries were reviewed and the rationale for treatment was evaluated. The aim was for behavioral homework to reinforce gradual, consistent increases in selected physical activity and discourage rapid fluctuations in activity. Preliminary targets were set at a safe, achievable level to maximize the likelihood of success. Each individual was given an exercise program that included both pictures and descriptions. Additionally, flexibility and exercise program guidelines were provided along with an exercise diary that detailed each program. This diary had to be attended to daily, and the exercise frequency was fixed at three times per week. The participants were informed that some amount of muscle soreness should be expected as a result of the exercise activity. Participants were also taught the difference between muscle soreness that may be a result of the exercise program and muscle pain. Participants were urged not to progress too quickly by adding their own exercises or excessively increasing intensity levels within normal daily activities. The goal was to reinforce gradual increases in activity rather than to promote sudden amplifications. As an example of stretching and strengthening, the participant would start with one set of four repetitions for each exercise. If the patient was successful with this assignment and felt no physical repercussions or delayed recovery response, they would then be encouraged to gradually progress until there was one set of eight repetitions was reached. Next, the participant would increase to two sets, starting at two sets of four repetitions.

Session 8–13.

Homework was reviewed, problems were identified and dealt with, and targets were set for the following week. Preparations were continued for the maintenance of functional gains. New targets were established only after habituation was achieved to existing ones or if the participant consistently achieved his or her goals for a period of two weeks. The therapist conveyed a positive outlook, and all achievements were warmly reinforced.

In depth analyses of in vivo activity and symptom records confirmed behavioral progress and identified potential and actual behavioral setbacks. As a result, new behavioral prescriptions with scheduling modifications were developed. In these final sessions, strategies for preventing and dealing with setbacks and relapses were rehearsed. The importance of maintaining the principles of therapy after termination were also reinforced.
 
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I can understand about the lack of treatments at present but surely this new on site information is more about creating understanding about the condition and the symptoms and difficulties that it causes. I don't think it is enough to just change the info on site. A very great d eal of damage has been caused to patients in the past and is still the case all over the world because of their misinformation. They should have some sort of public campaign to counteract the damage done. The perception of family members, employers friends neighbours have been formed by their misinformation and has caused enormous suffering. They need to right this grave wrong in a very public way. I probably sound way over the top but I do not think that I am. They could make things easier for a lot of us and the medical profession need to be made to get on board while we wait for treatments to help.
 
I'm actually seeing it plainly that the discrimination from the general population stems largely from the even more pronounced contempt by medical professionals. General population comments about ME are largely dismissive, rarely actually cruel.
The more medical professionals there are on the discussion, the more vitriolic discussion gets. It's really something to watch.

That's very disheartening. At the conference in Montreal, there were a few of these; but they were invariably greybeards clicking their tongues and tutting. Most younger docs were more open-minded as a rule.
 
The CDC have to be careful about promoting treatments that don't have evidence from clinical trials so I don't find it that surprising they might not be more specific. I don't believe there is evidence from clinical trials that this approach is safer, though theoretically it could be:

Yea, I agree that CDC needs to be careful about what treatment it promotes. The problem for me is that isome of the statements the site makes about exercise suggest they are promoting a form of treatment or a benefit that's not supported by the evidence while they also leave off important evidence that could better guide doctors on what to do and not do.

For instance, the site states "While vigorous aerobic exercise can be beneficial for many chronic illnesses, patients with ME/CFS do not tolerate such exercise routines." So is the site telling doctors that "non-vigorous" aerobic exercise is okay? What kind? Based on what evidence?

The site also states:
"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."​
But couldn't this wrongly suggest to doctors that exercise could lead to tolerance of aerobic exercise and normal levels of activity? Especially given the pervasiveness of the PACE GET narrative?

On the other hand, the PEM treatment section doesn't directly speak to impaired aerobic energy metabolism and the lowered anaerobic threshold for which there is evidence. The Etiology and Pathophysiology section does briefly mention this, which is great to see. But IMO, what's known about this needs to be reiterated and integrated into the PEM section to help doctors better understand what they are dealing with.
 
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