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NIH ME/CFS Inpatient Study Findings Released, to Mixed Reception
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- Last Updated: 05 March 2024 05 March 2024
NIH ME/CFS Inpatient Study Findings Released, to Mixed Reception
As many in our community are aware, the findings of the ambitious inpatient study of ME/CFS at the NIH were published in late February in Nature Neuroscience. This study, which took eight years and $8 million, studied only 17 participants who had ME/CFS for less than five years. Enrolment had to be limited due to the pandemic, and the study chose to not enroll patients with longer-term illness in order to eliminate deconditioning as a factor.
The reception of the study’s findings by ME/CFS organizations and researchers have been mixed. There has been positive response to the finding of chronic activation of the immune system, as well as measurable abnormalities in the brain, blood vessels, the gut microbiome, and energy metabolism. Despite the study’s small size and limitations, the depth and range of testing – taking place over two weeks of inpatient residence at the NIH in Bethesda – was historically significant. We thank the NIH researchers involved for their diligence and dedication, and we particularly thank the people with ME/CFS who gave their time and risked their health to participate in the study.
However, we agree that post-exertional malaise (PEM), the signature symptom of ME, was not well integrated in this study, with a 1-day CPET test being administered rather than the 2-day CPET. And MassME joins other organizations and researchers in deploring the study’s prominent use of the term ‘effort preference’ in their characterization of fatigue, and encourage the study’s authors to amend the paper or publicly clarify their of the use of this term to avoid less-than-careful readings that might lead to continued psychologizing of this illness.
If you want to read further reactions to the NIH study we recommend the response statement from the Bateman Horne Center and corresponding coverage in Medscape, Anthony Komoroff’s summary in Harvard Health, David Tuller’s interview with MGH researcher Mike VanElzakker, and coverage by the NYT and Scientific American.
Working with your FM doctor
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- Last Updated: 03 January 2016 03 January 2016
When a health care provider suspects a diagnosis of fibromyalgia, often s/he will refer the patient to a rheumatologist to confirm the diagnosis. This may take one or more visits. Sometimes the rheumatologist will continue to follow the patient but often the patient will be referred back to the primary care provider for continued care.
As with any condition, health care providers vary in their knowledge of fibromyalgia, and even in their attitude toward this condition. If you feel that you are not getting appropriate care from any doctor, a frank discussion at the next appointment may help. Lean more about Working with your Health Care Provider.
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Notice about names
The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS.
Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.