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Huntington’s disease (HD) is a neurodegenerative disease inherited in an autosomal dominant manner. It is caused by an expansion of cytosine, adenine, guanine (CAG) repeats within the huntingtin (HTT) gene, which is located on chromosome 4. This pathological expansion of CAG repeats results in the production of a mutant huntingtin protein with an abnormally long polyglutamine […]

Nina Muirhead: Impact of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on the quality of life of family members – Results of an online survey

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Published Online: May 18th 2022

New findings from a recent study investigating the impact of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on the quality of life (QoL) of family members are presented in this touchNEUROLOGY interview by one of the study authors, Dr Nina Muirhead (Doctors with M.E. Director).  The results illustrate the significant negative impact on the QoL of partners and other family members, highlighting the difficulties faced by these families and changes that could be made in clinical practice.

Questions

  1. What is known about the impact of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on the quality of life of people with ME/CFS and their family members and what questions remain unanswered? (0.18)
  2. Could you tell us a little about your recent study and the questionnaires used? (0.56)
  3. What were the findings in terms of overall health status and FROM-16 score, and what components of these scores had the biggest impact on participants? (1:23)
  4. What were the strengths and weaknesses of this study? (1:59)
  5. Following these findings, what changes would you like to see in healthcare systems to acknowledge the impact of ME/CFS? (2:50)

Disclosures: Nina Muirhead in a Director on the advisory board for Doctors with ME

Support: Interview and filming supported by Touch Medical Media. Interview conducted by Gina Furnival.

A link to the full article can be found here: Impact of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on the quality of life of people with ME/CFS and their partners and family members: an online cross-sectional survey | BMJ Open

Click here for more content from Dr Nina Muirhead

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