Unpaid carers are the missing piece in treatment guidelines and research priorities for ME/CFS, 2022, O’Dwyer et al

Sly Saint

Sly Saint

Senior Member (Voting Rights)
authors:
  1. Siobhan O’Dwyer, senior lecturer in ageing and family care1,
  2. Sarah Boothby, former carer2,
  3. Georgia Smith, research fellow1,
  4. Lucy Biddle, senior lecturer3,
  5. Nina Muirhead, dermatology surgeon4,
  6. Sharmila Khot, consultant in anaesthesia, intensive care, and pain medicine5
The recent publication of an all party parliamentary group report,12 a National Institute for Health and Care Exellence guideline,3 and new research priorities4 heralds a dramatic shift in approaches and attitudes to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in the UK.

Largely ignored in all three publications, however, are unpaid carers (known outside the UK as family carers or caregivers). Most people with ME/CFS …

paywalled
https://www.bmj.com/content/378/bmj.o1691.full

eta:
pdf
https://www.bmj.com/content/bmj/378/bmj.o1691.full.pdf
 
Last edited:
Sly Saint said:
authors:
  1. Siobhan O’Dwyer, senior lecturer in ageing and family care1,
  2. Sarah Boothby, former carer2,
  3. Georgia Smith, research fellow1,
  4. Lucy Biddle, senior lecturer3,
  5. Nina Muirhead, dermatology surgeon4,
  6. Sharmila Khot, consultant in anaesthesia, intensive care, and pain medicine5
The recent publication of an all party parliamentary group report,12 a National Institute for Health and Care Exellence guideline,3 and new research priorities4 heralds a dramatic shift in approaches and attitudes to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in the UK.

Largely ignored in all three publications, however, are unpaid carers (known outside the UK as family carers or caregivers). Most people with ME/CFS …

paywalled
https://www.bmj.com/content/378/bmj.o1691.full
Click to expand...
This is a version of this rapid response which can be read for free here https://www.bmj.com/content/377/bmj.o1341/rr
 
Prioritising Unpaid Carers in New Approaches to ME/CFS

"Consequently, there is an urgent need to:
• Acknowledge the significant harm that has been done to carers by a health and social care system that has misunderstood and mistreated people with ME/CFS.
• Ensure carers’ voices are included in all policy making about ME/CFS.
• Recognise carers as experts by experience and vital advocates, particularly for those with severe ME/CFS who may be unable to advocate for themselves.
• Ensure health and social care professionals are equipped with the skills and resources to engage in positive working relationships with carers.
• Ensure that the wellbeing of ME/CFS carers is a priority in health and social care provision.
• Ensure that the wellbeing of carers is a priority for ME/CFS research. "

https://www.exeter.ac.uk/media/univ.../ODwyer_Unpaid_carers_ME-CFS_Policy_brief.pdf

Click to expand...
 
I feel there is a lot missing here about carers. To me one of the big issues is having flexibility from an employer.

As a carer I have been very lucky in my employer being flexible and allowing me to work at home when necessary and I've also avoided all travel for many years so that I am there to do the basic stuff of things like getting meals. Without such flexibility huge stresses could be created either trying to work and not doing all the caring necessary or having to work part time (or loose a job) which would mean huge financiall stress for the family. The stigma associated with ME can make this harder.
 
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