Rainbow at shoreline

The Massachusetts ME/CFS & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with ME (Myalgic Encephalomyelitis), CFS (Chronic Fatigue Syndrome) or FM (Fibromyalgia), their families and loved ones. The Massachusetts ME/CFS & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.

Research articles

NIH ME/CFS Inpatient Study Findings Released, to Mixed Reception

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.

 

 

 

Spaulding Rehab Fibromyalgia Study

Spaulding Fibromyalgia Flyer

Working with your FM doctor

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.

Subcategories

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.