The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
Discuss the article on the Forums.

Grades of CFS severity

Discussion in 'General ME/CFS Discussion' started by Kenny Banya, Feb 22, 2017.

  1. Kenny Banya

    Kenny Banya Senior Member

    Messages:
    311
    Likes:
    512
    Australia
    Posting in another thread has prompted me - Has anyone formulated a grading of CFS?

    My amateur attempt:
    Mild - able to work, but must 'manage' symptoms
    Moderate - can't work, predominantly house bound
    Severe - bed bound, requires home care

    What do you think?
     
    belize44 likes this.
  2. Kharren

    Kharren Hopeful opptomist

    Messages:
    18
    Likes:
    27
    Hermosa Beach Calfornia
    Thanks for this. It's a good start!! I thought I read a thread where there is a more "official" numerical rating scale for symptoms and or levels of fatigue. I am in fact searching for that now. When I go to the doctor (Chia) he is a CFS "expert" he uses a 1 - 10 scale (but my brain fog right now is not allowing me to recall the exact explanation for each numerical rating). 5 is able to function at ADL (activities of daily living) for 8 hours a day (I think). I like your 3 level grading system. It may be too simple. For example, I am bed bound right now but can get up for a few minutes and get to the bathroom and kitchen and don't need home care "yet". Thoughts?
     
    belize44 and Sidney like this.
  3. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,239
    Likes:
    16,197
    There are various disability rating scales in use for people with ME/CFS

    This is the MEA Disability Rating Scale which is used in the UK to back up DWP benefit, insurance and legal claims:

    http://www.meassociation.org.uk/2016/05/the-mea-disability-rating-scale-2016/

    I gave permission for it to be translated and used in Poland earlier today!

    Dr Charles Shepherd
    Hon Medical Adviser, MEA

    The MEA Disability Rating Scale, 2016

    A disability assessment scale can be useful for following progress and providing information for benefit, employment and insurance assessments. We’re posting this to help participants in our latest Quick Survey take part in the poll.

    VERY SEVERE
    100% DISABLED: 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.

    90% DISABLED: 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.


    SEVERE
    80% DISABLED: 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.

    70% DISABLED: 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
    60% DISABLED: 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.

    50% DISABLED: 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.

    40% DISABLED: 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.


    MODERATE TO MILD
    30% DISABLED: 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.

    20% DISABLED: 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.

    10% DISABLED: 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.

    0% DISABLED: Fit and well for at least the past three months. No symptoms at rest or after exertion. Capable of full-time work or education.
     
    Last edited: Feb 22, 2017
    Mel9, Sidney, mango and 2 others like this.
  4. Snowdrop

    Snowdrop Rebel without a biscuit

    Messages:
    2,896
    Likes:
    10,091
    @Kenny Banya

    Yes. There are several scales around. They have been debated as to their utility. It's difficult to capture the actual disability and what that means in terms of functioning so none capture things exactly I think. They are guides and approximations.

    Here is one: http://www.hfme.org/themeabilityscale.htm

    Another: http://drmyhill.co.uk/wiki/CFS_Ability_Scale_-_a_rough_measure_of_how_disabled_you_are

    Another: https://www.healthrising.org/forums/resources/dr-david-bells-disability-scale.139/
     
    slysaint, Dainty and GodGenghis like this.
  5. Mary

    Mary Senior Member

    Messages:
    2,801
    Likes:
    6,273
    Southern California
  6. Kenny Banya

    Kenny Banya Senior Member

    Messages:
    311
    Likes:
    512
    Australia
    Yeah that percentage scale is not too bad.
    There is nothing that states the 'need to constantly lie down', 'has to fight to stand up', 'has anxiety about standing up', etc
    I would rate myself as 50% on that scale
     
    Sidney and Quemist like this.
  7. Forbin

    Forbin Senior Member

    Messages:
    960
    Likes:
    4,027

    The International Consensus Criteria
    (ICC) of 2011 uses this basic scale:

    • Mild (an approximate 50% reduction in pre-illness activity level)
    • Moderate (mostly housebound)
    • Severe (mostly bedridden)
    • Very Severe (totally bedridden and need help with basic functions)
     
    mango, Quemist and Joh like this.
  8. arewenearlythereyet

    arewenearlythereyet Senior Member

    Messages:
    1,478
    Likes:
    7,571
    Most of these scales underplay the impact of working with symptoms. I am a 20-30% on the MEA scale but find the scales of very little use to convey what I need to continue working. I also can't stand for longer than 10 minutes, but can walk for 20 min. I can't lift or carry much. I have to carefully plan all my customer visits around how far I can drive without a rest break and I certainly would struggle to manage without 7 hrs sleep if early morning meetings were required. I think the scale doesn't reflect adaptations via pacing. I prefer specifics like.

    Can carry weights of 10kg yes no?
    Can stand for longer than 10 minutes
    Number of rest breaks required during the day
    Earliest start time

    These are all relevant specific things an employer would need to know to make reasonable adaptations at work as a starting point for the mild moderate group. The scales appear to have been designed around the more severe being home bound and requiring care rather than explain limitations for working for the moderate to mild group.

    I have struggled with my employer to establish reasonable adaptations at work and have received a lot of discrimination at work as a result. It would have been helpful to have had some scales that would have helped define the scale of my disability better.
     
  9. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,239
    Likes:
    16,197
    Thanks - several valid points which I will take into consideration when I next update the MEA Disability Rating Scale

    We have an MEA booklet covering all aspects of employment and ME/CFS:

    http://www.meassociation.org.uk/shop/management-leaflets/employment-advice/

    If you are a member of the MEA we also have a solicitor who is willing to provide some preliminary legal advice at no charge to members

    From the section on Employment and the Law

    8 EMPLOYMENT AND THE LAW


    8.1 The (1995) Disability Discrimination Act (DDA)


    The DDA was brought in to provide disabled people with legal rights relating to a number of important areas, including employment. Several people with ME/CFS have made use of this legislation and helped to establish that the DDA could apply to people with ME/CFS. The first case involved O’Neill vs Symm and Company Limited – where Dr Shepherd provided expert medical opinion. Details can be found by entering the case names on google.


    In relation to employment, the various parts of the DDA meant that employers had to make reasonable adjustments to employment conditions to accommodate the needs of a disabled employee.


    8.2 The (2010) Equalities Act (EA) is an important piece of legislation that combines, stengthens and replaces previous discrimination legislation, including the 1995 DDA.


    A person is disabled under the act if he or she has a physical or mental impairment (ME/CFS can be classed as physical or mental) which has a substantial (where the focus should be on what the person cannot do) and long term (i.e having lasted, or likely to last for 12 months or more) adverse effect on his or her ability to carry out normal day to day activities.


    ME/CFS is listed in section A6 as a specific condition covered by the Equality Act but each case will depend on the particular facts involved in the case. There is, in fact, no need for a person to establish a medically diagnosed cause for their impairment. What is important is the effect of the impairment – not the precise cause.


    In relation to employment, this means that employers have to make reasonable adjustments (which will depend on the size of the employer, disruption, cost involved etc) to employment conditions to accommodate the needs of a disabled employee.


    A good employer should be willing to make any necessary and reasonable adjustments.


    A bad employer may not be willing to recognise ME/CFS and make any adjustments. This may then lead to a situation where dismissal is threatened due to incapacity to do the job – in which case, in legal terms, this may be regarded as unfair dismissal or constructive dismissal (if someone leaves voluntarily). See next section for more information. If you find yourself in this situation you must take urgent and professional legal advice.


    Reasonable adjustments and modifications to the working environment could include any of the following:


    ◦adjusting equipment, e.g installing speech browser software onto a computer

    ◦providing a reader

    ◦providing supervision, e.g a mentor or support worker

    ◦modifying equipment, e.g a specifically designed chair

    ◦modifying reference manuals, e.g providing oral instructions as an alternative to written instructions

    ◦altering working hours to give a later or early start or longer lunch break

    ◦allocating duties to another member of staff

    ◦transferring a disabled member of staff to fill an existing vacancy, e.g a sales representative who has to give up driving could be transferred to an office-based vacancy

    ◦assigning a different place of work, e.g allowing home working during a period of rehabilitation

    ◦allowing time off for rehabilitation or medical treatment

    ◦adjusting premises or equipment, e.g the direction a door opens to allow for a wheelchair user


    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
  10. Kati

    Kati Patient in training

    Messages:
    5,466
    Likes:
    19,595
    Here are my comments.

    The severity scale is not perfect. There are many shades of mild, moderate, severe and very severe which do not fit in the nicely packaged descriptions. What I have trouble reconciling with, is that sometimes the severity can be linked to the availability of the support system. "Cannot prepare meals" is not a choice for those who are in the marginal zone of moderate severe with no one around. Sometimes one cuts corners in that regards, like instant meals, or peanut butter sandwiches if you do not have the luxury of a partner or family member to prepare the meals for you. Does that mean you are less disabled than someone who has someone providing the meals for you?

    Patients are masters at juggling their energy spending account. If they are cooking, then they are not bathing themselves that day. Or if they have someone to cook, clean and drive, it means they are able to step out of their home for one precious hour for a change of scenery. Does that mean they are less sick than a housebound patient who has no help and must clean and cook?

    Another comment pertains to cognitive functioning. Some consider themselves bedridden but they are able to talk on the phone for hours. For others, bedridden means they cannot go to the bathroom, must use bedpans and must be shielded from light and noise.

    It would be good to consider a severity scale that takes cognitive and neuro-sensory (noise and light, capacity to read and use the internet) into account.

    Other than the very severe who are totally unable to care for themselves, or eat, or tolerate any light or noise, there are grey zones of severity for ME. The functional capacity can be dependant on the amount of help/ressources that is available to the patient. The quality of life can be just as bad for a moderate than for a severe patient.

    The judgement that are made on patients about their functioning can be devastating- for sometimes patients must work very hard in order to maintain a bit of normalcy in their lives. The severity scale does not take this into account.
     
    Last edited: Feb 27, 2017
    slysaint, MastBCrazy, Wonko and 16 others like this.
  11. arewenearlythereyet

    arewenearlythereyet Senior Member

    Messages:
    1,478
    Likes:
    7,571
    Thank you for the advice. @charles shepherd I am not a member of the MEA but will have a look at membership.
     
    Mel9 likes this.
  12. Basilico

    Basilico Florida

    Messages:
    872
    Likes:
    2,055
    What I find tricky is how to rate someone who fluctuates wildly day to day. My husband, for example, has days where even just standing for 10 minutes is enough to trigger PEM and is couch-bound and must rest for most of the day. However, we can at times do things like go away for the weekend and he can walk for several hours. Other times he does something like change the oil in his car, gets hit with PEM, rests for an hour or two, and then is capable of doing other tasks around the house or going for a walk. We literally never know what kind of day he's going to have, which often makes planning extremely difficult. He is an excellent cook, from a family of chefs, and has a highly refined palate. He rarely has enough energy to cook like he used to, but if he can defrost something I've prepared in the microwave or make a sandwich, does that count as cooking? Not in my book, because that's not what he considers cooking, yet he can technically make sure he has food to eat when needed. How would someone like him fit on the percentage disabled scale?
     
  13. Hip

    Hip Senior Member

    Messages:
    9,510
    Likes:
    15,061
    Your own definition closely corresponds with the various definitions listed in this post of the mild, moderate, severe and very severe levels of ME/CFS.
     
  14. Hip

    Hip Senior Member

    Messages:
    9,510
    Likes:
    15,061
    I think when you are grading ME/CFS severity, you really need to ignore the times when ME/CFS is worsened as a result of PEM. During a period of PEM, you can easily move down one level on the scale of mild, moderate, and severe. So I think you need to assess the person when they are not suffering from PEM.

    Several different descriptions of the levels of mild, moderate, and severe are given in this post; these may help you to get a feel for each level.

    It does seem that you husband's sensitivity to triggering PEM varies a lot though from dat to day. If PEM can be triggered on one day just by standing for 10 minutes, but then on another day, he can walk for several hours without getting PEM, it seems that his PEM threshold is quite varied.

    I am not sure if other ME/CFS patients have such a varied PEM threshold. Usually experienced patients know roughly how much exertion it takes to trigger PEM; they are familiar with their PEM thresholds.
     
  15. arewenearlythereyet

    arewenearlythereyet Senior Member

    Messages:
    1,478
    Likes:
    7,571
    I find that PEM is heavily influenced by how well you pace all your activities . I find cooking an evening meal difficult standing prepping for 10 min then cooking on the stove top difficult most days when I've been working all day. As a result my evening meal is restricted to what I can heat in the oven rather than actual cooking. My job was mainly desk bound (cognitive) with some walking from department to department throughout the day. My PEM threshold varies depending upon how much energy I've consumed during the day. By the end of the day there is very little fuel in the tank by 6 pm and so if I over exert after then I am more likely to crash as a result. the cooking a meal is clearly about grading services required for the severe cases. So I would say I struggle to cook an evening meal every day because I work. If I didn't work then I could pace the prepping etc during the day and divert more energy to that task.
     
    Mel9 likes this.
  16. Basilico

    Basilico Florida

    Messages:
    872
    Likes:
    2,055
    I also am unclear if others have the the huge swing from functional to non-functional that he can have in a short amount of time. The thing is, sometimes he can sense that he is likely to get PEM after doing a small task (or a stressful cognitive one) and can stop what he's doing before it hits (or hits bad), other times when he would expect to get it (like after changing the battery in his car), he doesn't. Some days standing for a few minutes makes him feel sick but then the next day he could carry my very heavy steel frame bicycle down a flight of stairs. That wild swing is what makes this whole thing very difficult to manage. I don't think I could discount PEM from grading the severity of his 'disability' because even though he does have other annoying and difficult symptoms, at this point the PEM is what is making life unmanageable and depressing. I don't believe you can be an efficient and productive employee when you literally have no idea what you'll be capable of doing from day to day, so that in and of itself is disability in my mind. Cognitively, he's just as unpredictable. He has ADD, which is significantly worse if he hasn't slept well the night before - to the point that it's dangerous for him to drive or handle knives in the kitchen. But when he isn't sleep deprived he's a genius; I've actually never met anyone as brilliant and insightful as him. He is the type of person who can become an expert in just about anything, but catch him on a bad day and those abilities vanish. So if I didn't take those bad days into consideration, he wouldn't be considered disable at all.
     
  17. Artorias

    Artorias

    Messages:
    30
    Likes:
    119
    UK
    I'd put myself in this bracket. One thing I'm not sure about is "Not usually confined to the house". I'm not bedbound, and still have some mobility albeit very limited, but I'm effectively confined to the house because leaving the house and traveling to doctors appointments etc makes me feel so rough that there's basically no point going out unless it's absolutely necessary.
     
    ladycatlover, Mel9 and Webdog like this.
  18. Hip

    Hip Senior Member

    Messages:
    9,510
    Likes:
    15,061
    The PEM is taken into account in the sense that it is one of the factors sets the limits of activity of an ME/CFS patient during each day. If for example your PEM is one of the factors that prevents you leaving the house much, because walking too much triggers PEM which then puts you up in bed for several days after, that makes you a semi-housebound patient, because you need avoid going out for long periods because of the PEM repercussions.

    Some patients need to use a wheelchair in order to minimize the amount of physical exertion that they do, and if they did not use a wheelchair, they would be in a state of PEM all the time, and thereby bedbound for days on end.

    However, such patients in bed due to PEM would not be as bad as patients who are so ill that they remain bedbound nearly all the time anyway, even with without doing any physical or mental exertion (these are the severe patients).

    Has your husband tried any of the supplements that members of this forum have found help prevent, alleviate or curtail PEM? See List of Supplements Which Reduce PEM (Post-Exertional Malaise) Crashes.



    I also have ADHD, which appeared after viral meningitis. When I have not slept sufficiently, it is definitely worse, and I start to have trouble reading.

    Technically though ADD/ADHD is not a symptom of ME/CFS, and is not part of the ME/CFS brain fog. I also have the ME/CFS brain fog in addition to the ADHD, and together they make my cognitive problems worse.

    ADD/ADHD is more about problems with inputing information into your brain (eg, inputting the meaning from written text); brain fog is more to do with problems with processing that information once it is in the brain.
     
  19. Hip

    Hip Senior Member

    Messages:
    9,510
    Likes:
    15,061
    Do you find then that if you perform a certain set of activities, evenly paced out over the day, resting for an hour or so after each individual activity before commencing the next, that can help avoid triggering PEM; whereas the same set of activities if performed one after the other with no resting in between will likely trigger PEM?
     
    Mel9 likes this.
  20. arewenearlythereyet

    arewenearlythereyet Senior Member

    Messages:
    1,478
    Likes:
    7,571
    the main thing I've noticed from wearing my heart rate monitor is that after doing my monotonous repetitive paced day that my heart rate rises more in the evening. Just standing for a few minutes and it starts rising. I've learnt to wind down after I get home. I keep my heart rate below 90 for most of the time which keeps me away from the aerobic zone, but after 7 hrs in the office my cognition is low generally (can't do sums can't cope with more than one person talking etc.). If I push on through when I've used up my stamina for the day it just pushes me into zombie like shut down crash a couple of days later. I also end up with heart rate racing before I go to bed which makes sleeping difficult.

    I'm pretty much sofa bound from 6pm with a little trip to the oven to turn it on and put something in it. Cognitive tasks are the same...my stamina just doesn't last much past 10 hours even with good strict pacing resting regimes etc. Just walking up the stairs really slowly will put me in the 90's from 65 and I will stay there if I don't lie on the bed to bring it down before brushing my teeth etc. That wouldn't happen in the day after sleep when I would be able to do much more between rests. I guess I am getting some stamina refreshment from sleep but it doesn't mean that getting up is any easier (takes around 1-2 hrs to come to). Possibly something to do with adrenaline...not sure but that's my experience.
     
    Mel9 and Hip like this.

See more popular forum discussions.

Share This Page