76 Quotes About Me-cfs

To replace ME/CFS, the [Institute of Medicine] committee proposes the name systemic exertion intolerance disease, or SEID. This name captures a central characteristic of the disease: the fact that exertion of any sort— physical, cognitive, or emotional—can adversely affect patients in many organ systems and in many aspects of their lives.

The renaming of ME to Chronic Fatigue Syndrome (CFS) in 1988, giving misplaced emphasis to “fatigue”, trivializes the substantial disability of the disease 1 – which can extend to the wheelchair or bed-bound requiring 24 hour care ME/CFS is characterized by neurological, immunological, gastrointestinal, cardiovascular and musculoskeletal features – severe forms can present with paresis, seizures, intractable savage headaches and life threatening complications.

Severe, persisting fatigue is a prominent symptom of Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS), but individuals with this illness frequently report the occurrence of unique fatigue states that might be different from conventional symptoms of fatigue.

Individuals are often stigmatized and told their illness isn’t real… People with [ME] CFS face an incredible burden just getting doctors to take their symptoms seriously

In summary, patients with CFS are not “deconditioned”. Neither their muscle strength nor their exercise capacity is different from that of other sedentary members of the community (>70%). We remain unaware of any incontrovertible evidence that the various “exercise training” programs suggested in previous articles improve either the physiological or clinical status of people with CFS.

I take no pleasure in, and set no store by, the suggestion that Professor Wessely effectively hijacked the WHO logo to give credence to his own view of ME as a mental illness. Nevertheless, I am uncomfortable that the professor does not appear to be doing his utmost to clear the air on this issue.

I have a wish and a dream that medical and scientific societies will apologise to their ME patients.

the time has come for doctors and scientists to apologise for the very neglectful way in which ME has been researched and treated over the past 60 years.

I have no problem with not understanding the exact mechanism of the symptoms of CFS…I do have a problem with the lack of respect given patients with poorly understood neurological disease.