Workwell Foundation letter to healthcare providers: Opposition to GET for ME/CFS

Something to send your healthcare provider the next time they recommend graded exercise.

http://www.workwellfoundation.org/w...T-Letter-to-Health-Care-Providers-v4-30-2.pdf

Excerpt follows:

Previously, this was a letter to the British Journal of Sports Medicine, and covered by Tuller on virology blog.

 

On Twitter:

 

I tweeted my concern about the phrase “before increasing”. It is “increase” that is such a problem with GET.

Todd Davenport has replied that he will bring this concern to the group.

 

The letter was published as above in ME Essential Issue 146 Mid Summer 2018:

Reference 10 is:

Conceptual Model for Physical Therapist Management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Todd E. Davenport Staci R. Stevens Mark J. VanNess Christopher R. Snell Tamara Little
Physical Therapy, Volume 90, Issue 4, 1 April 2010, Pages 602–614, https://doi.org/10.2522/ptj.20090047

 

@Sarah I spoke on Twitter with Todd Davenport a few days ago. It seems the committee has not yet gathered to discuss this issue. He was still sympathetic, but I fear the damage of this letter has already been done. The CDC guidelines now talk about stabilising then increasing. It's a concern.

The bit you bold is also worrying. Worse actually "graded aerobic exercise".

 

@Keela Too Thanks for pursuing this. The CDC gives so little specific treatment guidance, so specifically recommending increased aerobic exercise will be noticed by healthcare providers.

The CDC is telling healthcare providers little has changed, that ME/CFS can continue to be treated with graded exercise, just so long as you don't actually call it "graded" exercise. Because, of course, PACE showed us graded exercise doesn't work.

Edit:

 

Thanks very much for contacting Todd Davenport, @Keela Too. I had a look at his tweets to you and the Blind Spots editorial he tweeted that's been discussed elsewhere here. Prima facie Workwell has come out reasonably strongly against GET. What is confusing is that four of the five authors of the 2010 paper number four of the current seven member Workwell Foundation team; they must know what they have published previously, and that this tallies with the final sentences of the open letter. If they don't call increasing aerobic exercise 'GET', what do they call it?

Incidentally in the editorial, PEM is defined as post-exertional malaise in the body of the text, but a subtitle has PEM as postexercise malaise.

 

Workwell seems to be currently focused on increasing non-aerobic exercise to tolerance. This is work in progress, and I expect their exercise prescription will slowly change and be based on individual factors, not a blanket prescription. The aerobic system is broken.

 

This "not a blanket prescription" is a problem. Modern managed healthcare demands standardized treatments to be rolled out across the organization.

For example, Kaiser Permanente's flavor, called "Complete Care", "creates a standardized infrastructure and approach to disease management".



Such uniform treatment is very effective at reducing costs and ensuring consistency in managing chronic conditions, which is the most expensive part of healthcare.

But what happens when a chronic condition, like ME/CFS requires very inddividualized treatment? This could be a situation where it's not possible to "align patients' needs with the those of the organization". Individualized management of chronic care patients is not inexpensive to implement.

So the big question: can individualized chronic care even be integrated into modern managed healthcare? Or are the CDC's new ME/CFS clinical guidelines infeasible and doomed to fail from the start? I honestly don't know the answers to these questions.

In the US, about 100 million people are covered by managed healthcare plans, such as Kaiser Permanente.

 

Yes, something like that I would expect to see in time.

 

In the future, perhaps. But right now there is a lack of evidence base. I don't recall the CDC mentioning step or heart rate monitoring. There is much evidence regarding managing blood sugar levels and diabetes. Not so much when it comes to ME/CFS and heart rates.

Without what they consider a strong evidence base, managed healthcare usually won't touch it.

The lack of specifics in the CDC clinical care guidelines is a real problem. When we needed a cookbook, the CDC instead provided a grocery shopping list.

I appreciate your comments, as I'm a month into pursuing an answer from Kaiser Permanente as to whether the new CDC clinical care guidelines are even possible to implement in managed healthcare.

PS: In the 1980's, diabetic blood sugars were often measured with home urine tests. Urine tests could be wildly inaccurate, and caused harm to diabetes patients, who were unable to correctly manage blood sugars. Despite clear ongoing harm, it took years for medicine to change practice and abandon urine glucose testing. Medical regulatory agencies were reluctant to step in. I see some parallels between urine glucose testing and graded exercise.

 

That is true. But I don't think it is unreasonable to use heart rates in particular as a proxy measure in the meantime. Easy to monitor in real time, and a pretty objective measure.

I don't use any monitoring equipment, but have long used heart rate to help manage activity. When combined with breathing rate, it is a useful monitor, I think.

I doubt it will do much harm, as long as one doesn't become obsessed with it.

 

I don't know where else to post this. Extremely annoying video from Workwell:

https://twitter.com/user/status/1293620812742905857


It's about advising pacing but completely misunderstands why people push and crash. I'm going to say it as simply as I can but it goes something like this: BECAUSE THEY DON'T HAVE A DAMN CHOICE. Pacing is a privilege, not everyone can do it without significant consequences, whether it's having food to eat or fighting mindless uncooperative bureaucracies in government or the very ableist and unfriendly system of medicine.

Some weird analogy about "roller-coasters" and "activity avoiders". There has been some good from Workwell but this is straight up awful, completely misunderstands that it is simple daily activity that makes it impossible to do proper pacing, that people cram as much as they can when they have a little energy because they get no help, no support, these things simply don't happen if we don't do them. Those things are necessities.

Rich people can pace without consequences. Some people can get away with balancing things because they have support at home. Far too many simply cannot do it, will not eat, have shelter or income if they don't do what's necessary. This video is ignorant condescending crap.