Trial By Error: The Shopping Bag Study; and New York State’s Revamped Website

By David Tuller, DrPH

And now, from our good friends in the psychology department at the University of Bath, comes the shopping bag study we’ve all been waiting for. Here’s some information recently disseminated by the university:

The purpose of this study is to look at how people with CFS/ME respond when asked to do a physically exerting task, and what thoughts and feelings they have while they are doing the task. We would like to compare responses to people without CFS/ME…

If selected, you will be asked to complete some questionnaires. These questionnaires will ask you about various things such as fatigue and mood. You will be given the choice to complete them online or have paper copies posted to you…

You will also be asked to attend a one-off testing session which will last no longer than an hour and during which you will be asked to complete a practical task. The task will involve carrying a shopping bag. This will be recorded and you will be asked to watch this back and answer some questions about it…

We hope to find out more about responses to physical exertion in those with and without Chronic Fatigue Syndrome. These results will improve our understanding and may contribute to the development of new treatments.

Ok, then! Personally, I generally dislike shopping. So carrying a shopping bag around, and then having to watch a video of myself carrying a shopping bag around, and then having to answer questions about how I feel while watching the video of me carrying a shopping bag around…well, let’s just say it doesn’t sound like my idea of a good time. I’d rather be clipping my toenails or something.

Apart from that, I’m scratching my head trying to figure out how asking people with CFS/ME, as the researchers call the illness, about their experience of carrying a shopping bag and their reaction to watching a video of themselves carrying a shopping bag will help anyone. Will anything be in the shopping bag? Are the responses the investigators want to assess just psychological ones, or are there actual physiological measurements involved? Will people be pushed to change their false cognitions about the impact of carrying around a shopping bag?

And will this be followed up by a clinical trial comparing CBT, GET, the Lightning Process and Shopping Bag Therapy (SBT)? Time will tell…

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And now for some good news from my home state of New York. (I’ve lived in San Francisco for three decades, but I grew up in New York City and view myself as an expat New Yorker in California—not as a Californian.) The New York State Department of Health apparently has its head screwed on right (metaphorically, of course). Last year, the state’s health commissioner, Dr. Howard Zucker, sent a letter to physicians letting them know that CBT and GET were no longer the standard of care for what he called ME/CFS. The letter noted that post-exertional malaise was the cardinal symptom and suggested that doctors view Unrest to gain a better understanding of the disease.

This month, the department went a step further and updated its site with excellent information about the illness, which it now calls ME:

Myalgic Encephalomyelitis (my*al*gic + en*ceph*a*lo*my*eli*tis) (ME), commonly referred to as chronic fatigue syndrome, is a serious, chronic disease that affects multiple body systems, including the nervous system, the immune system, and the body’s production of energy. Many people start feeling the symptoms of ME after contracting a viral or other type of infection or following a change in hormonal status, but experts do not yet know the exact cause. It is possible that the symptoms of ME result from an abnormal response by the immune system, most often to an infection. This can impact the brain and other systems of the body. What is known is that ME is not a psychiatric disorder and it is not caused by a lack of exercise, contrary to common belief. (The bold is in the original.)

And here’s what it says about the symptoms:

The most recognizable symptom of ME is post-exertional malaise (PEM), experienced by all people with ME. This symptom is often described as a “crash” in physical and/or mental energy following even a small amount of activity. People with ME have described PEM as experiencing “the worst flu imaginable,” feeling like, “my cells are dying,” and “having my life force drained out of me.” When people experience PEM, any or all of their symptoms may worsen and they may need bedrest for days, weeks or even longer to return to how they felt before the “crash.” For some people with ME, something as simple as brushing their teeth, eating, or reading email can cause PEM. In some cases, people do not return to how they felt before the “crash.”

Imagine the body’s energy level as a battery on a cell phone. Usually, when you plug in a cell phone overnight, the battery is fully charged in the morning, much like the way most people feel after a good night’s sleep – fully recharged. The body of a person with ME is like a cell phone with an old battery that can never be fully recharged. Even after hours of sleeping, they still may not have enough energy to do their daily activities.

And this about the PACE treatments:

Although cognitive behavior therapy (CBT) and graded exercise therapy (GET) were once recommended to treat patients with ME, these interventions assume that patients are just out of shape (deconditioned) and are based on studies that included patients with other fatiguing conditions. These recommendations have caused more harm than good for people with ME and have been eliminated from the Centers for Disease Control and Prevention (CDC) website.

The document itself links to the recent BMC Psychology article that completely debunks PACE.

The mention of the CDC is interesting, because when it comes to this illness the agency has been a disgrace. At some point the CDC removed most references to PACE from its website while keeping the GET and CBT recommendations. Officials explained this away by claiming that the recommendations now had nothing to do with PACE and that the treatments were being suggested as generic management strategies. This was of course a lie—a face-saving way for the agency to avoid having to admit that it had gotten things terribly wrong by citing PACE in the first place.

Once the agency removed the recommendations last summer, it didn’t bother to announce the change. I asked the CDC about it after noticing a mention on one of the forums (I think–I can’t quite remember now). I was sent a statement maintaining that the change had been made because people misunderstood the recommendations about exercise and psychotherapy. This was, of course, nonsense–another face-saving untruth. The CDC presumably revamped its information because someone there finally recognized that continuing to promote these discredited treatments, even as generic management strategies, was damaging the agency’s already diminished reputation.

But since last summer, officials have done very little, if anything, to disseminate the information about this critical change—which is one reason why major medical organizations in the U.S. continue to recommend the therapies for these very vulnerable patients.

Things are moving forward—but much too slowly.