Russell Fleming, Content Manager, ME Association.
For this month’s website poll, we’d like to know what category of severity you feel most reflects your (or the person you care for's) current level of disability.
This is obviously a snapshot poll and the reality over time is likely to be that your M.E. has fluctuated between categories, might have been relatively stable, progressively improved or deteriorated.
Your answers to the main question, and feedback in the resulting discussion on Facebook, Twitter and Instagram, will help Dr Shepherd, Hon. Medical Adviser to the ME Association in future discussions about Severe M.E with the NICE guideline committee.
You will find the website poll on the homepage of the website. It appears about halfway down the page, just below the ME Biobank promotion.
The NICE Guideline Review
NICE (The National Institute for Health and Care Excellence) are currently reviewing the 2007 clinical guideline for CFS/ME and we have the opportunity to influence the final outcome.
The guideline is very important as it is a framework and key reference tool for the NHS in England, Wales and Northern Ireland and it also has influence in Scotland and beyond the UK.
Your answers to the survey will provide a rough estimate of how many people who follow our website and social media consider themselves to be in each category, and this will also influence our future content and discussion within the ME Association.
Illness Severity Definitions
The ME Association recommends the use of the FOUR severity definitions (Mild, Moderate, Severe, Very Severe) created by Dr Diane Cox and Professor Leslie Findley in 1998 (below).
These were built upon by members of the CFS/ME Working Group that included the ME Association, and resulted in a key report to the chief medical officer in 2002.
The ME Association has since then expanded these categories to create a disability rating scale (also below). This scale can help you to better gauge your level of disability and progression and is also useful when trying to describe your current situation and progression (or lack thereof) to others – including, for example, GPs, allied health professionals and the DWP.
The current NICE clinical guideline only defines THREE categories of illness severity: Mild, Moderate and Severe. While they have clearly used the definitions from the 2002 report, they chose to amalgamate severe and very severe into one category.
In effect this means that very severe is not recognised to the extent that we feel it should and this could be having a negative effect on healthcare provision and understanding from the medical profession.
For example, there are no inpatient facilities for people with M.E., home visits from GPs remain difficult to obtain, specialist nurses are almost non-existent, and personalised care needs are not well defined or resourced.
We think that this decision by NICE to exclude very severe was wrong and we will be seeking the reinstatement of the four severity definitions in the new guideline.
And, while we don’t believe that reinstatement will immediately lead to improved healthcare provision, we hope that this change and the resulting discussion might lead to a more encompassing and relevant framework.
We would very much welcome your thoughts on this and on the disability rating scale. You will find the website poll on the homepage of the website. It appears about halfway down the page, just below the ME Biobank promotion.
Join The Discussion
If you’d like to join the discussion on social media or in the comments section below, then perhaps also consider the following questions:
- Do you agree that the four categories of severity and their definitions are better suited for the new NICE clinical guideline?
- Or do you feel the current three categories and definitions are sufficient?
- Does the MEA disability rating scale adequately describe your level of disability?
- Could either reference tool be improved in such a way to be more reflective of your experiences?
- And, what has been your experience of illness severity and level of disability since your diagnosis?
We can’t promise that all your comments will directly affect any future changes, but we will do our best to take them into account when Dr Shepherd makes his representations to NICE.
Definitions adopted in the 2002 report by the CFS/ME Working Group to the Chief Medical Officer:
| Mild – Are mobile and can care for themselves and can do light domestic tasks with difficulty. The majority will still be working. However, in order to remain in work, they will have stopped all leisure and social pursuits, often taking days off. Most will use the weekend to rest in order to cope with the week.|
Moderate – Have reduced mobility and are restricted in all activities of daily living, often having peaks and troughs of ability, dependent on the degree of symptoms. They have usually stopped work and require rest periods, often sleeping in the afternoon for one or two hours. Sleep quality at night is generally poor and disturbed.
Severe – Will be able to carry out minimal daily tasks only, face washing, cleaning teeth, have severe cognitive difficulties and be wheelchair dependent for mobility. These people are often unable to leave the house except on rare occasions with severe prolonged after-effect from effort.
Very severe – Will be unable to mobilise or carry out any daily tasks for themselves and are in bed for the majority of the time. These people are often unable to tolerate any noise and are generally extremely sensitive to light.
Current Definitions in the NICE Clinical Guideline for CFS/ME:
| Mild – People with mild CFS/ME are mobile, can care for themselves and can do light domestic tasks with difficulty. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often take days off or use the weekend to cope with the rest of the week.|
Moderate – People with moderate CFS/ME have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work, school or college and need rest periods, often sleeping in the afternoon for 1 or 2 hours. Their sleep at night is generally poor quality and disturbed.
Severe – People with severe CFS/ME are unable to do any activity for themselves or can carry out minimal daily tasks only (such as face washing, cleaning teeth). They have severe cognitive difficulties and depend on a wheelchair for mobility. They are often unable to leave the house or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed and are often extremely sensitive to light and noise.
The ME Association Disability Rating Scale:
Severe symptoms – often on a continual basis. Cognitive function (i.e. short-term memory, concentration, attention span) is likely to be very poor. Bedridden and incapable of living independently. Requires a great deal of supervision and practical support – including disability aids such as a hoist or a stair lift – with all aspects of personal care (i.e. feeding, dressing, washing) on a 24-hour basis.
Severe symptoms – often including marked cognitive dysfunction, for much or all of the time. Bedridden and housebound for much or all of the time. Has considerable difficulties with all aspects of personal care. Unable to plan or prepare meals. Requires practical support and supervision on a 24-hour basis.
Moderate to severe symptoms for most or all of the time. Only able to carry out a very limited range of physical activities relating to personal care without help. Requires help with meal planning and preparation.
Frequently unable to leave the house and may be confined to a wheelchair when up or spends much of the day in bed. Unable to concentrate for more than short periods of time. Usually requires daytime and night-time supervision.
Moderate to severe symptoms for most or all of the time. Confined to the house for much or all of the time. Normally requires help with various aspects of personal care and meal planning and preparation, possibly on a 24- hour basis. Very limited mobility. May require wheelchair assistance.
Moderate symptoms for much or all of the time. Significant symptom exacerbation follows mental or physical exertion. Not usually confined to the house but has significant restrictions on mobility when outside and may require wheelchair assistance. Likely to require help with aspects of personal care and meal preparation – but not necessarily on a full-time basis. Requires regular rest periods during the day. Unable to resume any meaningful regular employment or education.
Moderate symptoms for much or all of the time. Symptom exacerbation follows mental or physical exertion. Not usually confined to the house but mobility restricted to walking up to a few hundred yards at best. May require help with some aspects of personal care. May require help with meal planning and preparation. Requires regular rest periods during the day. Able to carry out light activities (i.e. housework, desk work) linked to normal daily living for short periods but not able to resume regular employment or education.
Moderate symptoms for some or much of the time. Normally able to carry out most activities linked to personal care and normal daily living but may require assistance with meal preparation. May be able to cope with some work-related tasks for short periods – provided they are not mentally or physically strenuous – but not able to resume regular work or education.
Fluctuating level of mild to moderate symptoms. Normally able to carry out all aspects of personal care and to plan and prepare meals. Able to walk short distances on a regular basis. May be able to return to work on a flexible or part-time basis – provided adjustments are made to cope with physical activity or cognitive problems. May have to stop leisure or social pursuits to resume work or education.
Normally only mild symptoms at rest but exacerbation will follow activity. Able to carry out all aspects of personal care and to plan and prepare meals. Able to walk short to medium distances (i.e. up to half a mile) on a regular basis. Normally able to return to flexible or part-time work or education.
Generally well with only occasional mild symptoms. No problems with personal care or daily living. Mobility and cognitive functions may still be restricted but almost back to previous levels. May be able to return to full-time work or education.
Fit and well for at least the past three months. No symptoms at rest or after exertion. Capable of full-time employment or education.
Medical information above is not intended to be a substitute for medical advice or treatment from your doctor. The ME Association recommends that you always consult your doctor or healthcare professional about any specific problem. We also recommend that any medical information provided by the ME Association is, where appropriate, shown to and discussed with your doctor.
The ME Association Disability Rating Scale can be purchased as a leaflet and downloaded from the website shop.
The ME Association
Real People. Real Disease. Real M.E.
We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.
If you would like to support our efforts and help ensure we can inform, support, advocate and invest in biomedical research, then please donate today.
Just click the image opposite and visit our JustGiving page for one-off donations, to establish a regular payment or to create your own fundraising event.
Or why not join the ME Association as a member and be part of our growing community? For a monthly (or annual) subscription you will also receive our exclusive ME Essential magazine.
ME Association Registered Charity Number 801279