NIH & Myalgic Encephalomyelitis “Effort Preference”

Call to Action - Retraction

I have waited decades to see my US government make progress in the diagnosis & treatment of myalgic encephalomyelitis. 

My friends and family have all assumed that having a diagnosis while living with a disease that profoundly impacted the life of myself and my family must mean the disease is getting adequately addressed by our government and the medical community. 

The reality has been like living behind Alice in Wonderland’s looking glass.

Not only have the health agencies and established medical groups not been addressing ME, they have been misrepresenting the reality and actively stifling research.  The latest travesty has been the NIH research paper published in February of this year.

I wrote about my concerns with NIH’s paper, Deep phenotyping of post-infectious ME/CFS in my March 1, 2024 article NIH Intramural “ME/CFS” study finally published. 

Seeing what others have now written, I wanted to share more about the danger of the paper and the importance of bringing attention to the harm it will cause.

Building a Strong Case

Jeannette Burmeister is an attorney and experienced ME advocate.  Information about Jeannette can be found on her 'about" page on her blog, Thoughts About M.E. HERE. 

Her background as a lawyer is evident as she makes a strong case for taking action to stop the harm caused by NIH and other US health agencies. 

She has done a deep dive into NIH’s allegation that there is something wrong with ME patients’ effort preference and the history of the US government's institutional bias in a four part series of articles.

This is a long series but it pulls together in one place much of what those of us who have been watching for decades have witnessed.  

It shows with ample evidence that an investigation and retraction of this latest paper, Deep phenotyping of post-infectious ME/CFS, is the only safe way forward for patients.  

The final installment includes a Call to Action.  

In a Nutshell

Jeannette Burmeister provided me with the following synopsis via email:

“The NIH authors redefined ME—based on a sample size of 15 patients—as characterized by an 'unfavorable effort preference,' which they allege is the false perception of effort, rewards, and fatigue resulting in deconditioning and functional disability. This is identical to Simon Wessely’s biopsychosocial theory of ME as a disorder of the perception of effort.

According to my analysis of the underlying EEfRT data, the NIH authors misinterpreted and misrepresented them through improper statistical manipulation, the omission of relevant analyses, the failure to exclude patients who were physically too limited to participate in the EEfRT, etc.

In fact, NIH’s own data unequivocally refute their claim, raising serious issues of research misconduct. A retraction would be the only reasonable fate for this paper if science as a field still has any integrity and credibility.”

The following quotes are from the introduction paragraph of each installment of Jeannette Burmeister’s series, The NIH Intramural ME Study: “Lies, Damn Lies, and Statistics”. 

Part 1: 

"The infamous intramural National Institutes of Health (NIH) paper on post-infectious Myalgic Encephalomyelitis (ME), a disease affecting many millions worldwide, purports to define the ME phenotype based on a cohort of 17 ME patients.  With this study, NIH continues its obstinate false portrayal of ME as a disease characterized mainly by fatigue.  

However, the agency put a new spin on its decades-old fatigue narrative.  Using the Effort Expenditure for Rewards Task (EEfRT) in a 15-patient sub-set, the investigators reframed fatigue as “unfavorable preference” to exert effort or an “unfavorable” “Effort Preference”—which they say is the decision to avoid the harder task—to be a “defining feature” of ME.  According to NIH, this Effort Preference outcome was the study’s “primary objective.”  

The agency, in essence, pathologized pacing and branded ME with a new and highly prejudicial malingerers’ label."

Part 2: 

"In this Part 2 of my 4-part series, I am analyzing the EEfRT data to show that they do not support the claim that ME patients’ symptoms are caused by dysfunctional effort discounting (overestimating of effort and underestimating of rewards and capacity), which is what NIH calls an altered Effort Preference.  

The authors included a graph, Figure 3a [see article for graph], which is the main illustration of the false Effort Preference claim, that completely misrepresents the EEfRT data and, in short, presents an entirely false picture of the EEfRT results.  In addition, they failed to exclude patients who were physically unable to complete hard tasks at anywhere near acceptable levels for the EEfERT data to be valid.  

Moreover, the authors failed to report—other than their false conclusion—their analysis of a metric that is typically at the heart of the EEfRT analysis: the assessment of whether a group difference in probability sensitivity (typically due to game optimization strategies) is responsible for the lower proportion or number of hard-task choices by patients.  

Moreover, based on the data reported by the authors, patients performed better on the EEfRT than controls did, which the authors concealed by not sharing the relevant analysis (virtual rewards obtained).  

I will also show that the recorded EEfRT data is unreliable as at least some of it is false.  In addition, I will identify a large number of careless mistakes in the paper with respect to the EEfRT, demonstrating that NIH’s work on ME was phoned in."

Part 3: 

"In this Part 3, I will discuss the EEfRT as a psychological measure, NIH’s frantic attempt of damage control in response to the firestorm reaction to the intramural paper, the agency’s decades-long obfuscating characterization of ME as merely fatiguing, its reframing of fatigue in ME as being purely subjective, the investigator’s fear of using a second-day exercise test, and NIH’s ongoing research of an allegedly dysfunctional Effort Preference in ME."

Part 4: 

“Readers who are not intricately familiar with ME history and politics might ask themselves how we got here.  

How is it possible that investigators with a glaring bias were allowed to be in a position to abuse this study to confirm their prejudices, set ME research back, and further damage the reputation of ME patients, leading to great harm?  

Read about the agency’s long-standing culture of intimidation & threats leading straight to the NIH study.”

The following description of Part 4 was posted by Jeannette Burmeister on X (twitter) 

"Part 4 of my deep dive into NIH's pernicious Effort Preference claim. Read about the agency’s long-standing culture of intimidation & threats leading straight to the NIH study. Also: a Call to Action to get the study investigated & retracted."

Call to Action

I won't duplicate what she has written about the Call to Action.  Please see bottom of Part 4 or see her article in the ME Global Chronicle entitled Call to Action: Investigate and Retract the NIH Intramural ME Study. 

If anyone is looking for help in writing something or guidance on how to reach your member of congress, please feel free to contact me.  I am happy to help anyone interested in doing more advocacy. 

In addition to the suggested actions, I would hope those who are members of "ME" orgs would urge the leadership of these orgs to support these actions.  If those orgs choose to side with NIH, I don't think they deserve the community's support. 

What happens now is pivotal to the future of everyone with myalgic encephalomyelitis and all those affected by the "effort preference" narrative. 

Those affected include the many who recently became ill due to covid and are getting lumped under the ambiguous Long COVID diagnosis.  NIH researchers look ready to repeat with that group the psychologizing narrative of "effort preference" 

You can make a difference!

As those who know this disease the best, we are the ones with the unbiased incentive to demand the change that will stop the ongoing institutional bias.

Colleen

P.S.:  For those on X (Twitter), I recommend following Jeannette Burmeister to see more on this issue.  

Information provided here or in comments is not to be considered medical advice

Sources

Walitt, B., Singh, K., LaMunion, S.R. et al. Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome. Nat Commun 15, 907 (2024). https://doi.org/10.1038/s41467-024-45107-3