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

XMRV Not Found in Blood Working Group Study

In a study reported online in Science on Sept. 22, 2011, and presented the following day at the IACFS/ME Conference in Ottawa, Canada by the senior investigator, Dr. Graham Simmons, the XMRV Scientific Research Working Group (SRWG) announced that in a 9-lab study, XMRV/MLV was not reproducibly detected in blood samples.

Blood samples from 15 subjects previously reported to be XMRV/MLV-positive and 15 healthy blood donors previously determined to be XMRV/MLV-negative were distributed among 9 labs in a blinded fashion. These labs performed tests to detect viral nucleic acid, antibody, and viral replication.

Seven labs found no evidence of virus in any samples; two labs did detect virus in some samples, but the results were not replicated between the two labs, and similar viral activity was found in both positive samples and controls.

The authors concluded that present assays (laboratory tests) could not reliably detect XMRV/MLV in blood samples, and therefore routine screening of the blood supply was not warranted.

However, during the question period following his presentation at the Conference, Dr. Simmons confirmed the current recommendation that patients with a diagnosis of CFS or ME not give blood.

Published online 22 September 2011 [DOI:10.1126/science.1213841]. 

CFS Distinguished from Depression In Boston-Based Study

A research team in Boston was able to clearly distinguish those with Chronic Fatigue Syndrome (CFS) from both healthy and clinically depressed controls in a study performed in 2011. The study, which utilized EEG spectral coherence data to identify brain variations in CFS patients, was performed by physicians from Harvard Medical School, Tufts Medical Center, Children’s Hospital Boston and Brigham and Women’s Hospital.

The ability to distinguish CFS from depression has long been a challenge in the medical community. There is no single diagnostic test available and the “standard battery of tests” does not detect the unique biomarkers involved in this complex illness. Although a variety of advanced testing methods can be used for diagnosis relating to biological dysfunction in CFS patients, most practitioners are unfamiliar with the research.

The EEG study included a total of 632 subjects and was conducted in an academic medical center electroencephalography laboratory. Comparisons were made between patients with carefully defined CFS, individuals with major depression, persons reporting general fatigue (but no other symptoms), and 390 healthy controls.

Following analysis of the information obtained, the research revealed that the technique had “identified unmedicated patients with CFS and healthy control subjects without misclassifying depressed patients as CFS…” The report further concluded that the research provides clear evidence that “CFS patients demonstrate brain physiology that is not observed in healthy normals or patients with major depression.”

The Abstract and Full Text are available at http://www.biomedcentral.com/1471-2377/11/82/abstract

2011 International Consensus Criteria for Diagnosis of Myalgic Encephalomyelitis (ME)

A new criteria for diagnosing the illness Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) was published under the title, "Myalgic Encephalomyelitis: International Consensus Criteria", in the Journal of Internal Medicine, v. 270, n. 4, 295-400, Oct. 2011. "Myalgic encephalomyelitis (ME)" means muscle pain and inflammation of the brain and spinal cord. The rest of this article reviews the basic features of the 2011 diagnostic criteria and compares it with the 2003 ME/CFS Canadian Case Definition.

The new Criteria uses only the name ME, and not CFS, because according to the authors:

"In view of more recent research and clinical experience that strongly point to
widespread inflammation and multisystemic neuropathology, it is more
appropriate and correct to use the term 'myalgic encephalomyelitis' (ME)
because it indicates an underlying pathophysiology."

ME has, historically, been the name used for the multi-systemic illness in Britain, the European countries, Canada, Australia and New Zealand.

The 2011 ME International Consensus Criteria is co-authored by many of the most respected and committed international ME/CFS researchers and clinicians, including B.M. Carruthers, K.L. DeMeirleir, N.G. Klimas, R. Vallings, L. Bateman, D.S. Bell, J. Miskovits, and A.R. Light.

According to the article, the 2011 Consensus Panel consisted of clinicians and researchers from a wide range of specialties and from thirteen countries. "Collectively, members have approximately 400 years of both clinical and teaching experience, authored hundreds of peer-reviewer publications, diagnosed or treated approximately 50,000 patients with ME..." A number of the authors also contributed to the 2003 Canadian Consensus Criteria, a fact that accounts for much of the continuity between the two Criteria.

Another important aspect of the 2011 Criteria paper is the citation of 119 articles by the authors. These citations constitute a major review of much of the significant illness research over the past 20 years. This expansion of knowledge was significant enough, according to the authors, to improve the ability to identify and diagnose the illness, thereby providing the basis for the development of the 2011 Criteria.


2011 Criteria differentiates ME/CFS from other fatiguing illnesses

The authors state that ME "...is a complex disease involving profound dysregulation of the central nervous system...and immune system...dysfunction of cellular energy metabolism and ion transport...and cardiovascular abnormalities...

"Criterial symptoms [in the Consensus Criteria] are supported by a study of more than 2500 patients that determined which symptoms had the greatest efficacy to identify patients with ME...

"Investigations into gene expression...and structure...anomalies including increased oxidative stress...altered immune and adrenergic signaling...," and other identified pathophysiologies provided the basis for the development of the new Criteria.

A further aim of the new Criteria is to provide for a better selection of only those patients afflicted with ME/CFS. A major problem with the 1994 Centers for Disease Control and Prevention (CDC) CFS Definition and the more recent 2005 Reeves "Empirical Criteria" is that these diagnostic criteria do not adequately separate patients who are depressed from patients with ME.

"Patient sets that include people who do not have the disease lead to biased research findings, inappropriate treatments and waste scarce research funds..." The 2003 Canadian Criteria "differentiate patients with ME from those who are depressed..."

The Canadian Consensus Criteria was used as a "starting point" for the new 2011 Criteria, but significant changes were made, including the diagnostic specifics appropriate to children.


Overall differences between the 2011 ME International Consensus Criteria and the 2003 ME/CFS Canadian Consensus Criteria

The 2011 Criteria incorporates much of the new illness research conducted since 2003 and is structured more on an understanding of the systemic pathological processes of the illness. The 2003 Criteria is organized more according to characteristic "symptom clusters".

The 2011 Criteria names the illness solely as ME and drops the name CFS included in the 2003 ME/CFS Criteria. The authors write: "Using 'fatigue' as a name of a disease gives it exclusive emphasis and has been the most confusing and misused criterion."

Another major change in the new ME Criteria is that the 6-month "waiting period" for diagnosis contained in the 2003 criteria (and in the 1994 CDC Criteria) is eliminated. The authors write: "No other disease criteria require that diagnoses be withheld until after the patient has suffered with the affliction for six months."

However, they write: "Notwithstanding, periods of clinical investigation will vary and may be prolonged, diagnosis should be made when the clinician is satisfied that the patient has ME rather than having the diagnosis restricted by a specified time factor."

Two important changes in an understanding of the illness are apparent from the 2011 Criteria. First is a recognition of the body's pathological inability to produce sufficient energy. So the symptoms resulting from the response to exertion or recovery from it are given much more significance and made more explicit in the new Criteria.

Second, the 2011 Criteria reformulates many of the 2003 autonomic and neuroendocrine symptoms under a new, more inclusive, pathological category of energy production/transportation impairments.

The 2011 Criteria overall requires a greater number of minimum symptoms with emphasis on flu-like symptoms, susceptibility to viral infections, genitourinary, gastro-intestinal, and various sensitivities.

The 2003 Criteria, in contrast, distributed its minimum number of required symptoms more broadly among immune, autonomic and neuroendocrine symptom-complexes. It also required fewer minimal total symptoms.

The two definitions vary in how symptoms are categorized or grouped together, as well as in the number or combination of symptoms needed in order for the patient to meet the criteria.


Pediatric diagnostic considerations in the 2011 Criteria

In a separate section, the 2011 Criteria discussed how ME might manifest itself somewhat differently in children. The authors write: "Symptoms may progress more slowly in children than in teenagers or adults. In addition to postexertional neuroimmune exhaustion, the most prominent symptoms tend to be neurological: headaches, cognitive impairments, and sleep disturbances."

Headaches are severe or chronic. Migraine headaches "may be accompanied by a rapid drop in temperature, shaking, vomiting, diarrhea and severe weakness." Neurocognitive symptoms may include difficulty with eye-focusing and reading.

"Children may become dyslexic, which may only become evident when fatigued."

There will be slow information-processing which will create difficulty following oral instructions or taking notes. "All cognitive impairments worsen with physical or mental exertion." Young people with the illness may not be able to maintain a full school program. Also, "Pain may seem erratic and migrate quickly...Joint hypermobility is common."

The fluctuation and severity of numerous major symptoms may change in their relative severity and prominence "more rapidly and dramatically than in adults."

The Wiley online library provides access, at no cost, to the full text article, Myalgic encephalomyelitis: International Consensus Criteria

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.