Employment for ME/CFS and Long Covid

Website Survey: ME/CFS and Long Covid Employment

We recently published a comprehensive and completely revised guide to Employment Issues and ME/CFS. It is just as relevant to people with Long Covid. We'd like to assess the employment status of people in the online patient community and would be grateful if you could spare some time to complete this simple website survey.

Total Entries: 448

1. In what capacity are you able to work with ME/CFS or Long Covid?

a. Volunteering

Choice
Percent
Total
Less than 10 hours a week
18%
82
Between 11 and 20 hours a week
3%
12
More than 21 hours a week
3%
14

b. Employed

Choice
Percent
Total
Part-time less than 10 hours a week
8%
36
Part-time between 11 and 20 hours a week
6%
27
Part-time 21 hours or more.
10%
43
Full-time 35 hours a week
4%
16
Full-time 36 hours a week or more
7%
30

c. Self-Employed

Choice
Percent
Total
Less than 10 hours a week
8%
38
Between 11 and 20 hours a week
2%
8
Between 21 and 35 hours a week
0%
1
36 hours a week or more
1%
4

d. Permitted Work (Old-style ESA)

Choice
Percent
Total
Part-time 16 hours per week or less
3%
13
Voluntary 16 hours per week or less
0%
1

2. Does your employer know you have ME/CFS or Long Covid?

Choice
Percent
Total
Yes
40%
178
No
4%
17

3. Did you know you could ask for 'reasonable adjustments' in the workplace?

Choice
Percent
Total
Yes
44%
195
No
6%
29

4. Which of the following ‘reasonable adjustments’ have you used to enable you to work with ME/CFS or Long Covid?

Choice
Percent
Total
Access to work Scheme
4%
16
Flexible hours
20%
90
Hybrid working (home and office based)
11%
49
Home working
19%
85
Reduced hours
18%
82
Adjustment to normal working hours
12%
52
Disability Leave
4%
17
Job-sharing
0%
0
Change of role
0%
0
Acquiring or modifying equipment
5%
23
Regular breaks
16%
72
Quiet place to rest
9%
39
Disabled access
2%
9
Change of workspace location
2%
8
Supervision (mentor or support worker)
3%
13
Additional training and support
2%
8

5. I am unable to work because

Choice
Percent
Total
I am badly affected by ME/CFS or Long Covid
52%
231
I haven’t been able to find an appropriate job
1%
5
I took ill-health early retirement
10%
46
I am too old to work even if I had the ability
1%
4
I need to look after my children
1%
3
I am in full-time education
0%
1
Other (please leave comments on social media)
2%
9

If you'd like to leave comments and join in resulting discussions, please visit the ME Association's Facebook, Instagram, and, Twitter pages:

BACKGROUND: EXTRACTS FROM EMPLOYMENT ISSUES & ME/CFS – OCTOBER 2022

N. RETURNING TO WORK

Most people with ME/CFS will find that some degree of improvement occurs over the course of time – but this may take years rather than months. Once your health has stabilised and you have been able to increase activities comfortably and sustainably, it may be possible to attempt a return to work. A sudden return to full-time work is often unrealistic. A far more sensible idea is to try and return on a very flexible and part-time or phased-return basis, possibly in a role that is less demanding both physically and mentally or one that has been adapted to accommodate your needs…

4. REASONABLE ADJUSTMENTS

The Equality Act 2010 requires employers and service providers to make ‘reasonable adjustments’ that will allow disabled people to access the same opportunities and services as nondisabled people. Reasonable adjustments at work could include flexible hours, modifications to duties, and the use of practical aids that assist or enable you to do the job you have been employed to do.

You can agree to let certain people at work know about your disability and sign a consent form to comply with the Data Protection Act. However, a duty to make adjustments at work obviously can’t happen until an employer knows or ought reasonably to know that you are disabled. While there is not an explicit duty on employers to enquire, the Equality and Human Rights Act Codes of Practice suggest that employers must do all they can be reasonably expected to do to find out if an employee is disabled and in need of support.

Knowledge held for example by the Occupational Health or Human Resource departments may be inferred to the employer – so you don’t need to advise them explicitly that you have ME/CFS if it doesn’t affect your ability to work. However, if it does impact your working ability, you cannot expect your employer to make any accommodations unless you tell them first. And, if your condition is bad enough to be deemed a disability, the employer then has a legal duty to make reasonable adjustments.

A. PRACTICAL ADJUSTMENTS

Reasonable adjustments and modifications could include any of the following:

  • Adjusting business premises to allow for greater accessibility e.g. should you need wheelchair access or have difficulty climbing stairs, or need more space in your work area, or somewhere that is quiet to rest.
  • Assigning a different place of work e.g. a quieter area of the office, or allowing you to work from home during a period of rehabilitation, or for certain days of the week, or on a part-time or permanent basis.
  • Transferring a disabled member of staff to fill another vacancy, e.g. a sales representative who has had to give up driving could be transferred to an office-based position.
  • Adjusting working hours to give a later or earlier start to the working day or allowing for longer lunch breaks and a later finish. Or allowing flexible working – where you agree to a set number of hours but can be flexible about when you choose to work them.
  • Allowing time off for rehabilitation or medical treatment (see ‘Disability Leave', in full booklet).
  • Allocating some of the duties that your role would normally involve to someone else who might be better able to complete them – this could involve a formal ‘job-share’ arrangement.
  • Arranging or allowing for extra training on a one-to-one basis that might be more conducive to your needs.
  • Acquiring or modifying equipment, e.g., installing disability software on a computer that allows greater accessibility, or an ergonomic chair, or wheelchairadapted desk.
  • Providing supervision, e.g., a mentor or support worker who can help when you experience difficulties and complete tasks or share the workload.
  • Modifying reference manuals, e.g., providing oral instructions as an alternative to written instructions, or using text-reading software.
Employment Issues & ME/CFS
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