Why are the majority of pwME rarely mentioned?

I often use the mild term in conversation but never have felt comfortable using it. My cognitive changes were significant and I was getting PEM, trying to hold down a full time job. In my experience once you get the symptoms of ME your on a downward spiral if you don't stop work and start aggressively resting. Very difficult when you need the money, so you try to continue on working.

I prefer to call it in stage form as well but where does the stages start? I was a staged ME with acute timepoints where my ME changed in severity level.

Some MEs are sudden acute onsets at severe level. What stage do we call severe level, very severe level.

I feel fairly certain that the process that triggered my getting ME began many years before my ME onset via a flu. I had picked up a bacterial infection that was treated with pessary antibiotic that changed the composition of the microbiome at the moment of use. It was a sudden, permanent change. A different composition reset! This was back in the early 80's. I think this alteration must have caused downstream consequences creating a vulnerability to my getting caught up in this ME state. I just can't work out how else I could have got ME, especially when I look at all my relatives and their long healthy lives - the life I should have had.

So I feel I would want to call this my stage 1 in the process (the bacterial infection that changed the microbiome). My ME onset via the flu years later, stage 2. I spiralled fast here to severe ME and so passing through moderate on the way was more a continuous deterioration. I didn't know I had ME until severe. So, severe ME would be either stage 3 or 4. I am now out the other side and am moderate with severe and very severe bouts.
 
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Cinders66 said:
but I feel your post perpetuates the issue we have had for years as severe ME being treated as the “too difficult other”.
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To the contrary -- I am saying that we are, in fact, potentially the same. If people with severe presentations want to participate in research, I hope that they will. At the same time, I am not sure it is necessary because I am not sure that severe patients are unique, and I know there is a high chance of harm.

I knew this would be a somewhat controversial post, though, so I'm 100% okay with critique of these thoughts.
 
Cinders66 said:
You talk of “direct harm to your people” , do you mean a diversion of funds to severe ME , yet there’s hardly any severe ME research,,.
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Not in the slightest -- I mean "my people" as in "all pwME". Specifically I am referring to harm of people with severe presentations in this sentence, the opposite of what you've concluded here. Severe patients stand a chance of incurring serious harm when they participate in research, and maybe it isn't useful.
 
Something else on this issue I've noticed.
'People' talk about 'mild to moderate' and then go on to mention severe, very severe.
But in other contexts people say moderate to severe and then severe to very severe.

This is confusing because sometimes when saying 'mild to moderate' it implies inclusion of moderate patients but actually means 'mild' up to moderate.

Yet another reason to change/clarify this classification (eg as I mentioned in an earlier post) possibly with a 1-10 scale, maybe with two numbers one for 'at best' and the other for 'at worst'.

(this is re the UK classification)
 
We often cite that one, but others might consider it conservative. There is that "13.2% work" from... someplace.

I remember there was a bit of ambiguity re: whether that meant 13.2% work full time or can work at all.
 
JaimeS said:
To the contrary -- I am saying that we are, in fact, potentially the same. If people with severe presentations want to participate in research, I hope that they will. At the same time, I am not sure it is necessary because I am not sure that severe patients are unique, and I know there is a high chance of harm.

I knew this would be a somewhat controversial post, though, so I'm 100% okay with critique of these thoughts.
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The problem with that to me from a severe perspective is that we don’t know and if people with severe ME ARE different or more complicated or advanced then the research on mild-moderate won’t be enough and afaic we can’t wait ten years to know that for definite and THEN start. I think that it’s more about progression so severe ME, especially when it’s been progressed to through poor management and GET, could be “advanced ME” withpossible biological impediments and developed factors that aren’t there in newly ill, unexacerbated or mild-moderate people. If in many illnesses the initial form MS, HIV, Parkinson’s can develop complications and additional damage that isn’t there in the “pure form” which is also still there but has been compounded , i think that’s possible in severe ME, so in MS once the disease has set in and the scarring established it’s not responsive to the current DMM that is based on stopping immunology attacks, in hiv and Parkinson’s there’s a form of dementia that develops.

When a mild person with ME can be at work without cognitive issues with a body able to recover from a crash etc and a severe can’t move or do a sum and isn’t improving over years and declines with every exertion i personally think that there has to be, potentially at least, extra processes involved rather than it being basically x or xxxxxxx. If the main ME issue is blood flow, reduced oxygen and impaired metabolism then extra factors that might develop in the severe over time or through exertion could be increased central sensitisation, brain axis neural pathway breakdown due to poor cerebral flow I think Baranuik suggested as a factor, different immune or gene activity or other things I can’t imagine as a non scientific person.
 
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Cinders66 said:
When a mild person with ME can be at work without cognitive issues with a body able to recover from a crash etc and a severe can’t move or do a sum and isn’t improving over years and declines with every exertion i personally think that there has to be, potentially at least, extra processes involved
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I think we're agreeing here, but that means I'm changing my original (kind of devil's advocate) position.

It sounds like severe presentation should simply be studied separately, or that one should always be comparing severe to moderate or minor. It MAY be that it's simply a sliding scale of awfulness -- but as you and I have now both said, it may be that there's something significant/different about people in severe mode. I agree that there may well be some adaptations that are unique: processes that either begin or grow significant in severe presentation only.

But I don't think severe is some other disease.
 
JaimeS said:
There is that "13.2% work" from... someplace.
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I actually remember this study (Yay, my brain actually worked!) because I often link to the MEAction article you wrote on it:

https://www.meaction.net/2016/05/09/study-housebound-versus-nonhousebound-patients-with-mecfs/
MEAction said:
Here are some of the findings of the study:
  • Approximately 25% of patients are housebound or bedbound.
  • Only 13.5% of patients are able to work. This figure includes patients who work part-time.
  • A relapsing-remitting course, in which the patient’s symptoms sporadically worsen, then improve, is significantly more common in minor-moderate patients than in severe patients.
  • The sicker an ME patient becomes, the less likely they are to believe their symptoms are ‘in their head’.
  • Approximately 2/3 of patients reported that their illness had an infectious onset. The next most common trigger listed by patients was severe stress. Patients had the option to list multiple triggers for their illness.
  • Very similar percentages of patients reported rapid (<1 month), gradual (<1 year) and slow (>1 year) onset. Patients who were severe were more likely to have experienced a rapid onset; however, many minor-moderate patients also described their illness as rapid onset.
  • There were no differences on emotional or mental scores between severe, minor, and moderate patients. In other words, psychological wellness and emotional distress were not linked to illness severity.
  • Housebound patients’ fatigue was less likely to be alleviated by rest.
  • Post-exertional malaise (PEM) generally lasts more than 24 hours.
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Here's a link that goes directly to the Jason study:

http://www.ncbi.nlm.nih.gov/pubmed/27127189
 
JaimeS said:
Thank you @ahimsa ! I've heard people say that it's only full time and that I misunderstood -- but I'd like an outside opinion on that.
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That figure is correct for the DePaul Group, n=216
With regard to work status, over half of participants (56.7%) were on disability and 13.5% reported working full-time or part-time.
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For the Newcastle Group (who are probably Fukuda), n=100
With regard to work status, 37.5% of participants were working full-time or part-time with 30.2% of participants reported being on disability.
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Norway group 1, n=175
In terms of work status, the majority of participants (84.0%) reported that they were currently receiving disability and only 9.7% of participants reported that they were currently working.
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Norway group 2, n=63
Many participants reported being on disability (76.2%) and 19.0% reported they were currently working.
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I don't see that there is an overall employment figure calculated using all groups, my calculations are that, in total, there are 554 participants, 95 who are working either full or part-time, which equates to 17% being employed in some way. (I rounded to the nearest person when calculating percentages).
 
Andy said:
That figure is correct for the DePaul Group, n=216


For the Newcastle Group (who are probably Fukuda), n=100


Norway group 1, n=175


Norway group 2, n=63


I don't see that there is an overall employment figure calculated using all groups, my calculations are that, in total, there are 554 participants, 95 who are working either full or part-time, which equates to 17% being employed in some way. (I rounded to the nearest person when calculating percentages).
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This is a wellspring of awesome, @Andy thank you!
 
You can still drive a car, go to Costco, work in your garden et and still be severe and die of ME complications.
 
I agree with the original post.
If 70-85% of pwME can’t work due to their illness, why do we keep telling stories in the media about people who have careers?
And (I’ve not got the description here right so please bear with me) if 75-85% of pwME are not bedbound in a darkened room all day, emaciated and dependent on medical assistance, why is that the story we hear of how much of an impact ME/CFS can have on people’s lives?

Whatever the actual figures are (and they are important), the point is that the majority of pwME are not well represented by either narrative.

To me, narratives that are more useful are that by being housebound most of the time I can do various things about the house and even garden (in increments) but I am isolated socially and a career is something that makes me sad even to mention: It’s as thoughtless as talking about going for a barefoot walk in the grass to people who are wheelchair bound. Yes, we can do things to approximate that (off-road wheelchair, working from home for limited hours) but the fundamental experience is not the same (sensation of grass under feet, progression of a career, not just a job-role).

There is a fundamental grief that is left unaddressed by our (invisible majority of pwME) ability to cope with the day to day, enough to survive. In a covid world, we’re seeing what that does to healthy people. And it’s not good.

Simply knowing that we’re part of a community of people who are bound to these horrible restrictions by their ME/CFS, no parole to be applied for and only a slight hope for relief (without the trap of optimism)… to know that, to see stories about that, might contribute, just a little, to some strength to face our struggle.
To recognise that, like pwMS, there are a lot of us somewhere on a continuum and that endless stories of how people overcame it, alternating with the horrors of how much worse it can get, are not the stories we need.

We need stories about what it is to lead a fulfilling life with huge barriers, one that may not (really shouldn’t) be grand or glorious, but is good. Is valuable, and worthwhile. Is worth surviving this next bout of PEM for.

Perhaps: that a hobbit’s life is worth celebrating. Just as it is. And that there’s no need to seek adventure to justify it.
Or: that living a life that is distilled into its essence is the secret, focused only on the very most important things and letting the shoulds fall by the wayside.
I don’t know. But I would love it if we would allow the stories of the majority to exist, to be heard, to be seen and recognised, without always leaping to either extreme.
 
Subtropical Island said:
I agree with the original post.
If 70-85% of pwME can’t work due to their illness, why do we keep telling stories in the media about people who have careers?
And (I’ve not got the description here right so please bear with me) if 75-85% of pwME are not bedbound in a darkened room all day, emaciated and dependent on medical assistance, why is that the story we hear of how much of an impact ME/CFS can have on people’s lives?

Whatever the actual figures are (and they are important), the point is that the majority of pwME are not well represented by either narrative.

To me, narratives that are more useful are that by being housebound most of the time I can do various things about the house and even garden (in increments) but I am isolated socially and a career is something that makes me sad even to mention: It’s as thoughtless as talking about going for a barefoot walk in the grass to people who are wheelchair bound. Yes, we can do things to approximate that (off-road wheelchair, working from home for limited hours) but the fundamental experience is not the same (sensation of grass under feet, progression of a career, not just a job-role).

There is a fundamental grief that is left unaddressed by our (invisible majority of pwME) ability to cope with the day to day, enough to survive. In a covid world, we’re seeing what that does to healthy people. And it’s not good.

Simply knowing that we’re part of a community of people who are bound to these horrible restrictions by their ME/CFS, no parole to be applied for and only a slight hope for relief (without the trap of optimism)… to know that, to see stories about that, might contribute, just a little, to some strength to face our struggle.
To recognise that, like pwMS, there are a lot of us somewhere on a continuum and that endless stories of how people overcame it, alternating with the horrors of how much worse it can get, are not the stories we need.

We need stories about what it is to lead a fulfilling life with huge barriers, one that may not (really shouldn’t) be grand or glorious, but is good. Is valuable, and worthwhile. Is worth surviving this next bout of PEM for.

Perhaps: that a hobbit’s life is worth celebrating. Just as it is. And that there’s no need to seek adventure to justify it.
Or: that living a life that is distilled into its essence is the secret, focused only on the very most important things and letting the shoulds fall by the wayside.
I don’t know. But I would love it if we would allow the stories of the majority to exist, to be heard, to be seen and recognised, without always leaping to either extreme.
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I agree that having a fuller range of narratives in the media would help people understand just how debilitating, and just how invisible, this illness is!

I wonder if the representation of the most severe cases is meant (intentionally or unintentionally) to shake up the public, as in: "See! This really is serious!"

I appreciate you naming grief as a part of the experience of pwME. For me, I feel like I regularly come up against the frustration of my limitations and the grief of the life I thought I'd have, wish I had. It's ongoing.

I do love your idea of a more comprehensive representation of stories. A lot of nuance could be found there. And, perhaps more relatable for people without ME, in some ways, to see how much loss there is even with "mild" ME - the loneliness, the loss of career goals, the giving up of dreams of having kids or moving to a new place or going to college or... Even the intensive management of schedule and energy, saying no to many things we'd love to do, in order to preserve energy for other things. These stories need to be heard as well.
 
Sly Saint said:
the vast majority of ME sufferers who fall into the category between 'mild' and severe rarely get mentioned.
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JaimeS said:
Some clinicians will not diagnose severe ME

Finally, there is some diagnostic uncertainty around the most seriously ill patients. Some clinicians might wonder if there isn't something more wrong than "just ME" with the severe patients.
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In my experience as somebody who is very severe, medical professionals (if they even believe in ME at all) are not educated about us severe sufferers and instead assume (wrongly) that we are hypochondriacs, malingerers, or delusional. Same goes for social workers and agency care staff.

I say this because I was disbelieved and sectioned for having severe ME. No body believed that exercise harms me, and this continues to this day.
 
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