But ME can start bad and end good too, in fact the narrative is people improving not progressing,Paul Cheney has long used the progression idea, with stages 1 to 4, with stage 4 being potentially fatal.
But ME can start bad and end good too, in fact the narrative is people improving not progressing,Paul Cheney has long used the progression idea, with stages 1 to 4, with stage 4 being potentially fatal.
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.But ME can start bad and end good too, in fact the narrative is people improving not progressing,
But ME can start bad and end good too, in fact the narrative is people improving not progressing,
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 illnessesWhose narrative? Some improve, some fluctuate, some get worse, some stay about the same. I wouldn't even hazard a guess at the relative frequencies.
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,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.
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)
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.
- 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.”
The severity levels could then be mapped to different scales as appropriate.
Yeah, a "mild" form of a disease causing basically half of normal functioning is definitely an invalid scale.Given the use of numerical scales for other conditions this may make things more readily comprehensible
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!!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)
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.
- 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.”
The severity levels could then be mapped to different scales as appropriate.
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.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.
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).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.
But ME can start bad and end good too, in fact the narrative is people improving not progressing,
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.But I don't like the use of the word 'mild' in ME.
The point is very straightforward we may have relatively mild ME but we are NOT mildly ill. We have lost 50% of our functioning.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
1.
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.
2.
this one is better for understanding the bigger picture: http://thekafkapandemic.blogspot.com/2013/03/three-damaging-myths-about-severity.html
3.
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.
4.
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