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

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?

 

It is good.

I hope the media reports on this.

Edit: I just saw the Medscape post by someone else. That's pretty important as I know healthcare practitioners do use it.

 

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

 

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.

 

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.

 

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.

 

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.

 

Agree 100%.

 

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.

 

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.

 

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.

 

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.

 

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.

 

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.

 

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:

 

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.

 

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.

 

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.