Patients’ Accounts – Symptoms

This collection of videos illustrates key symptoms of ME/CFS: important when making a diagnosis. Patients describe these symptoms themselves. They had been ill for between two to thirty five years when interviewed and their age at onset ranged from ten years to middle age. The interviews give an idea of both the range and consistency of key symptoms.

The videos provide a body of first-hand evidence. They can be just started, or dipped into, to get a ‘taste’ of the disease. They help recognition of the distinctive qualities of the symptoms in ME/CFS. Some supplementary information relevant to diagnosis is also included.

Originally it was intended that the patients would all have been assessed by and donated blood samples to the UK ME/CFS Biobank. Due to difficulties with timing, the unpredictability involved when interviewing severely ill patients and then the dangers of Covid19, we included two patients who had been diagnosed by ME specialist Dr William Weir. We also made use of interviews with advocates with longer illness, to enable a more comprehensive picture of ME/CFS.

Sadly, between a third to half of contributors have deteriorated substantially since being interviewed: due to further infections, the impact of overly demanding life conditions, or in one case hospitalisation has had a very serious impact. We are extremely grateful to all these contributors. They have made this project possible, by being willing to share their experiences for all to hear and learn from. Thank you.

Reduced Function

 

ME/CFS is a biological illness, not a psychological disorder. Patients with ME/CFS are neither malingering nor seeking secondary gain. These patients have a variety of abnormalities that affect multiple systems…”

Dr Elizabeth Unger, chief of the CDC’s Chronic Viral Diseases Branch, responsible for conducting research on ME/CFS

How does the disease start?

 

“Illness onset may be characterized by flu-like symptoms that arise suddenly. Gradual onset may also occur. The illness can vary from mild to severe, with symptoms that may fluctuate significantly from hour to hour and day to day…..The illness usually follows a relapsing and remitting course…… restoration of full pre-morbid health is rare in adults.”

International Association for ME/CFS Primer for clinicians 2014 

Post Exertional Malaise

 

“ME/CFS patients describe post–exertional malaise as all-encompassing with symptoms affecting every part of the body, difficult to predict or manage, and requiring complete bedrest to fully or partially recover.”

Characterization of post-exertional malaise in patients with myalgic encephalomyelitis/ chronic fatigue syndrome.  Stussman B, Williams A, Snow J, et al. Frontiers in Neurology. Sept. 2020

–  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7530890/

Cognitive Impairment 

The (2020) NICE Guideline Draft lists cognitive difficulties as one of four key symptoms suggestive of ME/CFS.

“In one investigation, 89% of patients reported memory/concentration problems, while in another large study memory/attention deficit problems were reported by approximately 90% of 2,073 consecutive patients. Crucially, patients often report that their cognitive problems can be made worse by physical or mental exertion.”
ME Research UK referenced a meta-analysis of cognitive functioning in CFS. (Cognitive functioning in chronic fatigue syndrome: a meta-analysis. Cockshell SJ, et al. Psychol Med 2010)

Sleep

The International Consensus Primer for ME –  2012  advice on sleep includes the following points –

  • “Pace day-time activities and incorporate rest periods. Over-exertion can increase insomnia.
  • Listen to the body and rest or sleep when needed. Sleep dysfunction and an inability to produce sufficient  energy on demand makes it essential that low energy reserves are not depleted.
  • Establish a regular bedtime as much as possible. However, sleeping when necessary takes priority. In the chronic phase, incorporating short naps into the day may assist in being able to establish a regular bedtime.”

Orthostatic intolerance

Questions which elicit clues about orthostatic intolerance

  • How do you feel when you have been standing still for a few minutes or waiting in a queue?
  • How do you feel when you stand up quickly after you have been sitting or lying down for a while?
  • Do you work better on a laptop / ipad while sitting, or while lying down? Why is it easier?
  • Are you comfortable sitting in a chair with your legs down, feet on the floor, or do you tuck your legs up on the chair or a stool?
  • Can you stand comfortably in a hot shower?

More films will be added over the coming months