People with ME/CFS Share What it’s Really Like

ME/CFS patients in the UK share their stories. A survey in the UK carried out by the ME Association in 2016 found that 46% of patients thought that the care provided by their GP for CFS was “poor” or “dreadful.” Some 18% had no contact with their GP at all as they found they made their illness worse by not taking them seriously.

Source: People with Chronic Fatigue Syndrome/ME share what it’s really like – Insider

ME/CFS is Debilitating but Often Dismissed

A study by researchers at DePaul University, published in 2019 in Health Care for Women International, surveyed 541 people with ME/CFS and found that 89% had experienced a dismissive attitude from a healthcare provider. People with the condition often encounter insensitivity, inappropriate beliefs about causes, inappropriate treatments, disbelief and a general lack of knowledge, the study says. Because ME/CFS symptoms overlap with so many other disorders, like depression, those who have the condition are often misdiagnosed.

Source: Chronic Fatigue Syndrome Is Debilitating but Often Dismissed

Study: The Prevalence of Pediatric ME

Researchers screened a random sample of 10,119 youth ages 5-17 from 5,622 households. Of those who screened positive over the phone, 165 youth went on to medical and psychiatric examinations. Following evaluations, a team of physicians made final diagnoses. Youth were given a diagnosis of ME/CFS if they met criteria for case definitions. Of the 42 youth diagnosed with ME/CFS, only 2 (4.8%) had been previously diagnosed with the illness.

Source: The Prevalence of Pediatric Myalgic Encephalomyelitis | News | Newsroom | DePaul University, Chicago

NIH Funds Study of CFS and Mono in College Age Students

“This study may help identify risk factors that make certain individuals more likely to develop ME/CFS after an infection and may provide additional insights into biological causes of this debilitating disease,” said Vicky Whittemore, program director at the National Institute of Neurological Disorders and Stroke.

One aim of the new study is to assess the natural history of and risk factors for the maintenance of ME/CFS following infectious mononucleosis (IM).

Source: Press Releases | News | Newsroom | DePaul University, Chicago

Patients Push Limits for Clues to ME/CFS at NIH

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The NIH study is focusing on people who came down with the disease after an infection, of any sort, within five years. That initial infection is long gone but maybe, the body’s normal reactions to illness went into a destructive tailspin. Nearly 500 patients have called seeking to enroll in NIH’s study that is putting a few dozen under the microscope, with a barrage of sophisticated tests few hospitals can offer under one roof. “The ignorance about the condition just vastly dwarfs what we know about it,” said Dr. Walter Koroshetz, director of NIH’s National Institute for Neurological Disorders and Stroke, which is leading the research.

Source: Patients push limits for clues to chronic fatigue syndrome – STAT

FDA: Gabapentin, Opioid Combination May Cause Breathing Problems

New warnings about the risk of dangerous breathing difficulties when gabapentinoids are used with opioids or by certain patients must now appear on product labels, the U.S. Food and Drug Administration announced Thursday.

Gabapentinoids include: generic gabapentin and brand-name gabapentin marketed as Neurontin and Gralise; gabapentin enacarbil, marketed as Horizant; and generic pregabalin and pregabalin marketed as Lyrica and Lyrica CR.

Source: FDA: Gabapentin, opioid combination may cause breathing problems – UPI.com

RIKEN (Kobe City) and Osaka City University Hospital Announce a ME/CFS Clinical Drug Trial

In a breakthrough 2014 study in Japan, PET (positron emission tomography) scans of ME/CFS patients brains found significant inflammation in the amygdala, thalamus, and hippocampus that correlated with reduced cognitive function, pain, and depression. So far, PET scans have been performed on 19 male patients (26-54 years old) and 38 females (25-60 years old) of which about 40% have been found to have significant inflammation in the brain. Of these, three men have already started the drug trial. In this clinical trial, a PET scan and various tests are performed before any medication is started. After four months of administration of existing drugs currently used to treat cerebral infarction, various tests will be performed again to see if inflammation and symptoms are relieved. By the end of 2020, a total of 90 patients will be scanned, of which 30 patients with significant inflammation will join the trial. If the drug trial demonstrates positive results, there is the possibility of the development of new drugs to treat ME/CFS symptoms.

Source: Kobe Shimbun NEXT | Medical News | Drug development for severe fatigue and pain (ME/CFS)

Study Finds Differences in Energy Use by Immune Cells in ME/CFS

“This research gives us additional evidence for the role of the immune system in ME/CFS and may provide important clues to help us understand the mechanisms underlying this devastating disease,” said Vicky Whittemore, Ph.D., program director at NIH’s National Institute of Neurological Disorders and Stroke (NINDS)

Source: Study finds differences in energy use by immune cells in ME/CFS | National Institutes of Health (NIH)