We ran a survey asking people about state benefits and income through work or pensions they may receive. ME/CFS has a severe impact on the ability of people to continue with any previous employment and costs the Government large sums to provide benefits for those able to navigate the tortuous process of claiming.
Total Entries: 432
Which one of the following applies to you?
Choice
Percent
Total
I have a clinical diagnosis of ME/CFS
84%
365
I have a clinical diagnosis of Long Covid
6%
26
I have symptoms that might be ME/CFS but no official diagnosis
5%
23
I have symptoms that might be Long Covid, but no official diagnosis
0%
0
I care for someone with symptoms or a diagnosis of ME/CFS
1%
4
I care for someone with symptoms or a diagnosis of Long Covid
0%
0
I do not have symptoms or a diagnosis of ME/CFS or Long Covid
0%
0
To what extent do your symptoms (or diagnosis) impact your life today?
Choice
Percent
Total
No Impact You experience no problems with personal care or daily living. Your physical and cognitive abilities have been restored either completely or to a significant extent. You experience no symptoms at rest or after exertion and have not done so for 3 months or more. You feel capable of returning to full-time work or education and to leisure and social activities.
0%
0
Mild Impact You can care for yourself and do some light domestic tasks (sometimes needing support), but you experience difficulties with mobility. You might still be able to work or go to school, college or university, but you have probably stopped all leisure and social activities. You often need reduced hours, take days off and use the weekend to cope with the rest of the week.
0%
0
Moderate Impact You have reduced mobility and are restricted in all activities of daily living. You might have peaks and troughs in the range and severity of symptoms and your ability to initiate and complete activities. You have probably had to stop going work or school, college or university. You are likely to need rest periods, often in the afternoon. Your sleep at night is generally poor quality and disturbed.
0%
0
Severe Impact You are unable to do any activity for yourself or can carry out only minimal daily tasks (such as face washing or cleaning teeth). You have severe cognitive difficulties and may depend on a wheelchair for mobility. You are often unable to leave the house or have a severe and prolonged after-effect if you do. You may spend most of your time in bed and are often extremely sensitive to light and sound.
0%
0
Very severe Impact You are unable to leave your bed and are wholly dependent on the care and support of others. Physical or cognitive activities will be extremely limited. You need help with personal hygiene and eating and are very sensitive to light, noise, and touch. You might not be able to swallow, and you may need to be tube-fed. You will be very weak and might be unable to communicate verbally
1%
4
To what extent do your symptoms (or diagnosis) impact your life today?
Choice
Percent
Total
No Impact You experience no problems with personal care or daily living. Your physical and cognitive abilities have been restored either completely or to a significant extent. You experience no symptoms at rest or after exertion and have not done so for 3 months or more. You feel capable of returning to full-time work or education and to leisure and social activities.
0%
0
Mild Impact You can care for yourself and do some light domestic tasks (sometimes needing support), but you experience difficulties with mobility. You might still be able to work or go to school, college or university, but you have probably stopped all leisure and social activities. You often need reduced hours, take days off and use the weekend to cope with the rest of the week.
0%
0
Moderate Impact You have reduced mobility and are restricted in all activities of daily living. You might have peaks and troughs in the range and severity of symptoms and your ability to initiate and complete activities. You have probably had to stop going work or school, college or university. You are likely to need rest periods, often in the afternoon. Your sleep at night is generally poor quality and disturbed and you may have difficulty breathing properly.
0%
0
Severe Impact You are unable to do any activity for yourself or can carry out only minimal daily tasks (such as face washing or cleaning teeth). You have severe cognitive difficulties and may depend on a wheelchair for mobility. You are often unable to leave the house or have a severe and prolonged after-effect if you do. You may spend most of your time in bed and are likely to experience breathing problems and with heart function.
0%
0
Very severe Impact You are unable to leave your bed and are wholly dependent on the care and support of others. Physical or cognitive activities will be extremely limited. You need help with personal hygiene and eating. You will experience severe difficulty breathing and with heart function. You will be very weak and might be unable to communicate verbally.
0%
0
What was your annual household income (from all sources and before tax) in 2022:
Choice
Percent
Total
Less than £5,000
4%
17
£6,000 - £10,000
15%
65
£11,000 - £20,000
25%
109
£21,000 - £30,000
18%
77
£31,000 - £40,000
12%
50
£41,000 - £50,000
9%
38
£51,000 - £60,000
6%
25
£60,000 +
9%
38
What is your current employment status?
Choice
Percent
Total
Unemployed
66%
287
Part-time employed
15%
64
Full-time employed
11%
46
Self-employed or contractor
4%
19
Do you claim any welfare benefits?
Choice
Percent
Total
Yes
57%
248
No
41%
177
Please tell us the type of benefit you receive
Choice
Percent
Total
Employment and Support Allowance (ESA)
28%
120
Universal Credit (UC)
14%
62
Adult Disability Payment (ADP) (Scotland)
2%
7
Personal Independence Payment (PIP)
40%
174
Disability Living Allowance (DLA)
3%
15
Attendance Allowance (AA)
1%
4
Carers Allowance (CA)
1%
5
Tax Credits (TC)
2%
8
Other
3%
13
Do you receive a pension (tick all that apply)?
Choice
Percent
Total
Yes. I receive a state pension because I am above state retirement age
12%
51
Yes. I receive a private pension because I am above retirement age
7%
29
Yes. I receive a private pension because I had to take early retirement due to ill-health
14%
61
No. I don’t receive a private pension because I couldn’t get early retirement on the grounds of ill-health
5%
20
No. I don’t receive a private pension because I didn’t know I might be eligible
3%
13
No. I don’t receive any pension because I am below retirement age
69%
296