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ME severity scales - discussion

Discussion in 'Diagnostic Guidelines' started by adambeyoncelowe, May 14, 2019.

  1. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Moderator note.
    This post has been copied and following posts moved from this thread.
    See also this members only poll and discussion
    Library thread:
    Questionnaires and Scales used in ME or CFS research

    I've wondered if it should be moderate, substantial, severe, very severe instead. I can't quite think of a better scale, unless you have 'stage 1' to 'stage 4' or something like that.
     
    Last edited by a moderator: May 15, 2019
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  2. Inara

    Inara Senior Member (Voting Rights)

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    Maybe that's a good idea!
     
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  3. Amw66

    Amw66 Senior Member (Voting Rights)

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    Given the use of numerical scales for other conditions this may make things more readily comprehensible
     
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  4. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    I also like this idea @adambeyoncelowe stage 1 2 3 and 4? to show progression. It also changes the perspective ...it indicates that you can move from one to another rather than you are ‘only mild’

    It would also be a good idea to ditch the crude definitions based on whether you qualify for insurance/benefits.

    The scale definitions should focus on individual symptom severity and profile rather than a generic disability rating (i.e whether you are able to “do a job” or “go to school”). The MEA scale is so limited in this respect and it encourages a black and white definition rather than case by case assessments. When ME is so variable in symptom presentation this seems bizarre.

    A numeric scale also allows for development as we find out more ...e.g. stage 1A you can also apply type later if subsets are discovered

    E.g. stage 1 type A
     
    Last edited: May 14, 2019
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  5. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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  6. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Presumably, stage 1 would be remission? For that 5% that apparently recovers.
     
  7. Trish

    Trish Moderator Staff Member

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    That table is for hospital inpatients, so a very different situation and purpose compared with ME.

    I'm not sure about numerical categories. At least words have some meaning beyond those 'in the know'.

    But I don't like the use of the word 'mild' in ME.

    When I fitted that category according to the MEA scale, my SF-36 physical functioning was around 35-50 with crashes down to 0-10. I had a lot of unpleasant symptoms like constant pain in all my muscles and nausea and a deeply draining feeling of exhaustion all the time.

    When I was 'healthy' that level of symptoms and disability would have told me I was too sick to be at work, but because we needed my income and I'd run out of sick leave I forced myself to keep working.

    That's the reality for a lot of people with ME. It doesn't mean we are mildly ill. Mild conjures up the image of someone with a bit of a sniffle.

    Edited for clarity.
     
    Last edited: May 15, 2019
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  8. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Also, I think most of us occupy a range. It would probably be helpful to express things as a max/min. E.g., 60/30. Or the other way around if you prefer.
     
  9. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Now that my attention has been drawn to it, mild ME is pretty much a contradiction. I don't think I ever considered the concept of mild rheumatoid arthritis. Rheumatoid arthritis is not a mild problem, even when limited and stable. The four levels sound sensible but I wonder whether it should be something like moderated, substantial, severe, very severe. That might not be the ideal word but the intention would be to imply that ME isn't even ever moderate - it is always, if the diagnosis is worth making, a substantial problem. But in cases where improvement has resulted in something near to a normal lifestyle, as will also occur in RA, could be called moderated - i.e. has become moderate in impact.

    The argument against this I suppose is that some people may develop ME insidiously, with a prolonged period of moderate disability before becoming substantially ill. To disallow a diagnosis of ME in the early phase would clearly be a mistake. For RA we had categories of possible and probable RA to cover this sort of situation. The implications depend a lot on whether or not one thinks early diagnosis leads to better care and outcome. My instinct is to say that this counterargument does not override the case for the shift Adam is suggesting.
     
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  10. Trish

    Trish Moderator Staff Member

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    We've discussed severity scales before. I've added links to the previous discussions in the mod note at the top of this thread.

    I do think the severity scales need to be re-visited with a view to changing the descriptions of different levels of severity as well as the descriptors used (mild moderate etc). But it's fraught with problems because we all experience ME differently.
     
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  11. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    I think whatever levels description using words are they will start with mild. It needs to apply only to people who are functioning right at the top end of ME and managing to work without frqquent sick absence and drastic reduction in all other activitiesI think up to 20% disabled on the MEA scale is as far as it should go. I saw some discussion about one of the people in the MEA real people campaign who on his poster says he’s working part time after being unable to work before due to ME but in bed most of the rest of the time. That’s not mild ME that’s someone with moderate ME who has chosen to spend all available energy on working. Presumably for financial and self esteem reasons.
    ETA wrote this before I saw JE post with descriptions that would be a big improvement if can get NICE to change to that It would be a good move
     
    Last edited: May 15, 2019
  12. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Actually maybe these people should be the mild category.

    ETA maybe these would be in remission - would be good if there was a set number of years - 5? - that you had to be symptom free and functioning at previous levels - not adapting to the illness -before you could use recovery.
     
    Last edited: May 15, 2019
  13. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Thanks @Trish i should have thought of that when I posted that table
     
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  14. Trish

    Trish Moderator Staff Member

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    As a reminder of what we are talking about, here's the MEA scale:

    https://www.meassociation.org.uk/2016/05/the-mea-disability-rating-scale-2016/
     
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  15. Mithriel

    Mithriel Senior Member (Voting Rights)

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    Could I just repeat a post I made. It could be a useful addition to other scales as it takes into account things others miss.

    My life is actually easier than it was when I was moderately affected. Standing in a supermarket queue hanging onto the counter and knowing I had to get home and unpack was much worse than sitting in a wheelchair for instance. Like most people I did too much for the level of ability I had. Nowadays my symptoms stop me before I can overdo things so much.


    "I have been thinking a lot about reference scales for illness and I have come up with this which gives another way of seeing how you fit.

    An important point to emphasise is that in each category you can be mild or severe and it can vary from time to time.

    Here goes
    1. Normal health. You are not restricted in doing things by your health but occasionally you get an infection or have an accident but when things heal you are back to where you were.

    2. You have a chronic health problem which flares up occasionally, like a bad back or migraines but when it goes you are back to normal health.

    3. You have a chronic health problem which needs something done every day to control it but if you stick to a regime you experience normal health. This is things like taking a thyroid supplement to sticking to a gluten free diet or things like diabetes.

    4. You manage to stay independent at work or school but only if you restrict your life. This is the spoonie section. You need to consider everything you do very carefully.

    5. You can no longer manage life independently needing benefits and help (even if you aren't getting them you need it) As I said you can be mild on this scale or severe, it is the way chronic illness is affecting your life that is important.

    6. Unable to perform any of the activities of daily living and struggle to manage any sort of life.

    My hope for ME is that we reach level 3 living."
     
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  16. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    One of the things I dislike (there are many) about that scale is the use of Moderate to Mild as the last category, even though they have a separate Moderate section.
    As I have argued before
    https://www.s4me.info/threads/why-are-the-majority-of-pwme-rarely-mentioned.7732/
    https://www.s4me.info/threads/action-for-m-e-s-big-survey-2019.9321/page-2#post-165196

    But the MEA is only one of several scales and not the one used by NICE (afaik)

    I think that this is a very important issue that needs sorting out on the NICE guidelines;

    If they are going to categorise people (particularly in relation to suitablility for any particular treatment) there must be a much more accurate/comprehensive way of assessing it, not just picking one of three very vague definitions based on ?? (no idea where the current NICE guidelines got their descriptions from).

    eta: just popped into my head that the descriptions may have come from the
    2004 Management of chronic fatigue syndrome / myalgic encephalopathy in children and young people RCPTH report, which I posted about here
    https://www.s4me.info/threads/esther-crawley-what-drives-her-plus-quotes.1139/page-2#post-29076
    However, it has disappeared. The link no longer works.
    I eventually found a link that works here
    http://rcpch.adlibhosting.com/files/Evidence Based Guideline for the Management of CFS and ME in Children and Young People 2004-12.pdf

    but they didn't! still good to have the link to that report:)

    eta2: I can't find the report but there was one pre 2007guidelines that had a fourth 'very severe' category which was dropped.
    this review done in 2017 says there are four categories(?)
    http://www.meresearch.org.uk/our-research/completed-studies/severe-cfs-review/
     
    Last edited: May 15, 2019
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  17. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

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    Just been pondering on this (a slightly different wording, for U.K. ME/CFS Biobank questionnaires).
    I found it very difficult to work out.

    So, on the one above, I would describe myself at 60% disabled, but the mobility, wheelchair and personal care aspects do not apply (apart from food prep, I would struggle to make a dinner daily). Neither do I need the regular rest breaks (as long as I have not been overdoing it).

    Obviously I cannot ‘keep going’ - I go out for limited time periods.
    Everything goes in my diary and I try to space things out (doesn’t always work).
    I ‘work’ on iPad, on my lap, with legs up, on bed or sofa, for an hour or so at a time.

    I cannot do any strenuous work, even vacuuming/or standing dusting is strenuous.
    I cannot work full or even part time or study.
    I do get “severe symptoms with any exercise”.

    So the description is “moderate” ME but I am 60% disabled. Not sure MEebles (sorry, muggles, non ME people) realise how this all works at the moment.
     
  18. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    I think queens hospital used to use grade rather than stage, for me I often hear of stage in cancer where there’s a progression, whereas ME is more fluid. So grade 4 ME in severity can be at near onset whereas stage 4 might suggest “end stage” or a slow progression. The very severe early into onset person might quite reasonably be hoping for a good reversal of illness back up to “stage 1” .. would that make sense? . I’ve seen mild, moderate etc grading for acne but in an illness as impactful as ME I agree mild should really only be for those who’ve considered themselves near recovered where the illness means they can near normal with pacing and just the odd bad day etc.
     
  19. alex3619

    alex3619 Senior Member (Voting Rights)

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    We might consider the use of the phrase "sub-clinical" for those in apparent remission, particular if remission is considered because they fall below the threshold for diagnosis. This does not mean they are not sick, as Dr David Bell showed with ten patients in "remission". Its just they no longer have enough symptoms and severity for the diagnosis. It does appear full remission is possible, but I suspect that many cases are in this sub-clinical range rather than true remission.

    This whole thing will continue to be an issue till we have multiple reliable diagnostic tests and reliable pathophysiological measures.
     
    Last edited: May 16, 2019
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  20. alex3619

    alex3619 Senior Member (Voting Rights)

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    Paul Cheney has long used the progression idea, with stages 1 to 4, with stage 4 being potentially fatal.
     

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