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ME severity scales - discussion

Discussion in 'Diagnostic Criteria and Naming Discussions' started by adambeyoncelowe, May 14, 2019.

  1. Cinders66

    Cinders66 Senior Member (Voting Rights)

    But ME can start bad and end good too, in fact the narrative is people improving not progressing,
    Gecko and NelliePledge like this.
  2. Trish

    Trish Moderator Staff Member

    Whose narrative? Some improve, some fluctuate, some get worse, some stay about the same. I wouldn't even hazard a guess at the relative frequencies.
    Annamaria, Webdog, andypants and 13 others like this.
  3. chrisb

    chrisb Senior Member (Voting Rights)

    Also what is taken as the commencement point for the ME? If you start with a severe viral infection, is that classified as a severe start, or is it a point sometime later when the initial virus should have gone and one is left with "perpetuation of symptoms", as the wise men tell us.
  4. Denise

    Denise Senior Member (Voting Rights)

    I wonder though if it is not so much that people improve but rather that they develop a somewhat better understanding of their limits and manage to stay within them more often.
  5. Cinders66

    Cinders66 Senior Member (Voting Rights)

    The general U.K. narrative is most people improve over time. I fully question that but was pointing out that is the narrative which is different to progressive illnesses
    andypants, JaneL, Andy and 3 others like this.
  6. Cinders66

    Cinders66 Senior Member (Voting Rights)

    I think that someone like Jessica Taylor , well known very severe case, is proof that people can genuinely improve as well as change in wellbeing and function, she’s gone from healthy to rapidly in a period of a year descend to being unable to move, eat and speak to over many more years slowly improve to going out sometimes, to getting married and expecting a child,
  7. Mij

    Mij Senior Member (Voting Rights)

    Dr. Cheney's III Phases of ME

    My best friend passed away in 2016 from complications of ME. He was not bedbound, tube feed etc but had severe brain toxicity and over the years (18) slowly deteriorated. He got out more than I did but was considered "severe". I don't like labels, it just doesn't work for ME.
    Annamaria, inox, JaneL and 5 others like this.
  8. Medfeb

    Medfeb Senior Member (Voting Rights)

    I agree with @Inara's point that "Mild" in ME is not mild as most would understand it. Most/all of the definitions require a substantial reduction in function which reinforces that point

    Leaving aside the issue of the label used for "mild" for the moment, I'd be interested in what you think of the descriptions of mild, moderate, severe, and very severe proposed by Cox and Findley as reported in the 2002 Chief Medical Officer’s Report - https://www.meassociation.org.uk/wp-content/uploads/CMO-Report-2002.pdf Page 27. (Cox and Findley's paper referenced by the 2002 report has shorter versions of these descriptions)
    • 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.”
    This wouldn't replace the need for a severity scale which I think we still need - Bell, Karnofsky, and others have been proposed for that. But these terms are being used in both research and clinical and having common definitions of the terms would help convey the range of severity for providers and potentially help tailor treatment/management recommendations (e.g. pacing) in clinical care guidance. It would also help standardize the terms that are being used in research. For instance, at the NIH conference, Montoya talked about severe patients and then when Davis talked, he also described patients as severe but then said they'd really be very severe.

    The severity levels could then be mapped to different scales as appropriate.
    Simone, Annamaria, Webdog and 8 others like this.
  9. Cinders66

    Cinders66 Senior Member (Voting Rights)

    I think that is Very fair and reflects accurately the different levels of ME I have experienced. It is NICE definition that seems very out of whack and I personally think there has to be four or five rough categories recognised not three.
  10. rvallee

    rvallee Senior Member (Voting Rights)

    Yeah, a "mild" form of a disease causing basically half of normal functioning is definitely an invalid scale.

    The "mild" form of ME is something most people would consider a major level of disability. Good idea. Really time to address this. We shouldn't have to freaking add adverbs to a scale in order to make it reflect reality.
    Forbin, rainy, Annamaria and 13 others like this.
  11. NelliePledge

    NelliePledge Moderator Staff Member

    UK West Midlands
    I’ve got recent experience of being diagnosed and discovering I had “mild” ME I think this term can be counterproductive in terms of people understanding how ill they actually are and create unrealistic expectations about ability to get back to work/continue working. I think mild should be avoided. It means relatively Mild iin ME terms but people with severe ME are very ill indeed so having a level of illness that is lower than severe ME is still much more serious than mildly ill. In post #9 JE set out some descriptors that I consider would be much more appropriate. Mild has to go!!
    rainy, Annamaria, inox and 7 others like this.
  12. Amw66

    Amw66 Senior Member (Voting Rights)

    I would agree re mild in particular. Education have difficulties construing the level of disability for mild. It is not like "mild diabetes", " mild asthma", it requires a totally different mindset.
    Annamaria, JaneL, JemPD and 7 others like this.
  13. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

    I’m similar I’m 50-60% based on the description of symptom severity on this scale but I can work full time with pacing and adaptations (desk work working on my own with limited movement and long lead-time project work).

    Because of the direct link to employment in this scale I get shunted to 10% because I have chosen to spend the majority of available activity working. I don’t prepare my own meals most of the time, I struggle to shower, everything is meticulously planned out so I can take the 6 minute drive to my employer arriving when I’m able (sometimes not until 10am) with option to work from home if I can’t make it in.

    This scale is absolutely useless not only because it downplays the severity by using the “m’ word, but the links to employability screws me over in employment too because it means that I would struggle to convince my employer to give me adaptations, and I would struggle to get employment insurance to pay out etc etc. They really should consider changing it.
  14. alex3619

    alex3619 Senior Member (Voting Rights)

    Yes, but his stage four involves multiple organ failure, people close to death. Avoiding stage 4 is the goal.
  15. AliceLily

    AliceLily Senior Member (Voting Rights)

    I don't like using the word 'mild' either. My cognitive symptoms were severe and I was experiencing PEM but I was still able to work in those earlier years although as my ME progressed I was having to lie down all evening and then when I hit very severe ME everything changed.

    For me, my ME has a before and after very severe ME, each stage along the way different from all the stages I have been through. I can't say that my moderate level ME now is like my moderate on the other side leading up to severe ME.

    I don't know how to express the beginning of my ME because saying it was mild is not true especially in regards to the cognitive symptoms.

    Still working my way through reading this thread.
    rainy, Annamaria, JaneL and 6 others like this.
  16. Samuel

    Samuel Senior Member (Voting Rights)


    i published one idea here: http://thekafkapandemic.blogspot.com/2013/01/an-objective-severity-scale-for.html

    this is based on number of times, but could also be number of days. i call it more or less objective because you can in principle measure it with a device, but it's not really meant for that. it has a limited remit.


    this one is better for understanding the bigger picture: http://thekafkapandemic.blogspot.com/2013/03/three-damaging-myths-about-severity.html


    one comment i want to make on my scale, and many numerical symptom measures, is that i suspect that they are not linear.

    story A: suppose you left the house 200 times 2 years ago. now suppose you got worse, and last year you lost the ability to leave the house by 100 times. that is, you only left the house 100 times last year.

    think of the qol loss of a /subtraction/ of 100.

    story B: suppose you left the house 102 times 2 years ago. now suppose you got worse, and last year you lost the ability, as in story A, to leave the house by 100 times. last year you left the house twice.

    now think of the qol loss. don't you think it's bigger?

    yet in both cases you subtracted 100. something is wrong with this picture.


    ratios work better.

    story A becomes: you lost half of your ability to leave the house. story B becomes: you lost most of your ability to leave the house.

    therefore, if we are to attach labels to many scales, possibly including future or existing biomarker levels, we should consider labeling by multiplied/divided factors, not added/subtracted amounts. think half-life of radiation.

    it would be really dumb to have lots of distinctions among degrees at one end that are barely noticeable, and no distinctions -- and no labels -- as you get more severe. it can get absurd. no words means limited ability to talk about.

    but if we use factors instead of amounts for labels, then differences are about the same no matter where you are on whatever scale.

    that is, if we use labels at all.


    another common scale is merely: moderate means housebound; severe means bedridden.

    i completely agree that mild in m.e. is severe from any normal person's perspective. [ingrown toenail, modulo gangrene, is sort of the opposite: a severe case is pretty mild. or you could consider a severe papercut.]

    i go into this in my post in #2.

    on the other hand, you need enough labels at the severe end; you lose those labels and those distinctions if you start calling everybody severe. i mention that also.

    double plus severe does not work. the cdc had this little trick they played, and maybe still play, where they describe somebody who is just a bit tired [i.e. not m.e.], and then call that severe. they removed all the words for levels of severity for m.e.

    “[W]e conclude that the disease…described is not the chronic
    fatigue syndrome or any other clinical entity.” -- CDC
    Last edited: May 16, 2019
    Annamaria, JemPD, Inara and 2 others like this.
  17. alex3619

    alex3619 Senior Member (Voting Rights)

    A point I have made many times over the years about mild ME is this. Typically you have to lose substantial functional capacity to be diagnosed, and typically this is a loss of 50% capacity, just to be labelled mild. A loss of half of what you can do is not mild by community standards.
  18. Hip

    Hip Senior Member (Voting Rights)

    I cannot see anything wrong with using the term "mild". If you are a patient with severe ME/CFS, and confined to bed most of the time, then when you look at those ME/CFS patients who are still able to work full time and who are generally able to move about in the world, and probably still enjoy holidays, their condition will seem pretty mild in comparison to yours.

    The International Consensus Criteria provides these descriptions:

    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
  19. NelliePledge

    NelliePledge Moderator Staff Member

    UK West Midlands
    The point is very straightforward we may have relatively mild ME but we are NOT mildly ill. We have lost 50% of our functioning.

    If you call someone mild everyone thinks it means mildly ill. Nobody I have ever spoken to knows about severe or very severe ME until I tell them it exists. (Including people with ME or CFS diagnosis I’ve spoken to) They’re just aware of MILD ME so think it is something not too bad.
    Last edited: May 16, 2019
  20. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

    I’m not sure using ‘how often do you leave the house’ as a measure works. The reason being it’s got the same problem as “able to work’.

    So for me ...my onset was in 2012, diagnosis in 2014. Apart from the 8 months where I was signed off work or doing a phased return I have the ability to work full tim. This meant I left the house 4 work days per week and had 1 day a week working from home. I ‘holed up’ at the weekends not leaving the house.

    However I was ‘made redundant’ after a period of time, so for nearly a year I left the house much less frequently (say once or twice every 2 weeks), because I found I was able to do more that way. I then resumed full time work and it went up again. This time because I didn’t have a 45 min journey to get to work (6 min) I was able to do all 5 days away from home. I decided to be stricter in pacing so I stopped leaving the house and so this dropped to less frequently than before outside work, (even locally). So since then I very rarely see family or friends other than maybe once per year.

    8 months later my new employer was making redundancies and I was offered part time work 3 days a week so it dropped down again. I don’t leave the house as an option since I’m prioritising within my envelope other things over walking which is limited to restricted distances ( say 10-20 metres) at a time. I also try not to shower every day unless I’m working for the same reason.

    I can do this because my wife helps out (I.e I do not live alone) and we can afford to have/live in an area where 95% of our shopping can be delivered etc.

    Others may prioritise differently according to their needs, so the scale only reflects a sick persons priorities due to their circumstances and is not directly linked to the severity of their condition.

    I think using this could give others a skewed view on severity.

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