Addressing The Diagnostic Void Faced By Patients With Deteriorative Symptoms

So you're not necessarily talking about severity, but rather the repeated lack of return to baseline after PEM?

 

Some have called it “profound”, some have called it “extremely severe”, but none of those terms have any official recognition even by most charities, so these people are lumped in with “very severe”.

 

Pretty much, semi deterioraters get worse for months, may be a few years, whereas permanent deterioraters like me never fully recover. I realise that in the absence of empirical evidence, the cut off point is completely arbitrary (Reddit users say if you're not back to baseline after two years then it's probably permanent).

Not having permanent deterioration recognised in published research and medical education leads doctors to believe we're just delusional and should be treated as such. I've never seen the ME Association's purple booklet for GPs but I'm willing to bet that it does not mention what I'm describing. As far as I know, Melvin Ramsay never used the word permanent.

 

The MEA or at least Charles Shepherd has always recognised different courses of ME, if I remember correctly stable/improving, relapsing/remitting and deteriorating. I will see if I can find a link for this.

 

I, too, am what you call "a deteriorater". I believe there is a potential danger in "othering" us through different labels etc, not least because of how the ME deniers and the BPSers are weaponizing everything against us. You already often hear things like "ME can't make you that ill, it must be something else".

I would much prefer an "inclusive" approach, such as working to improve descriptions of very severe ME in info materials, research studies etc, to make sure that the descriptions reflect and include the whole spectrum including the extremes as well as permanent worsenings.

I really don't think it's a good idea to assume or imply that some pwME are safe from permanent deterioration, or that they are somehow different/have a "different kind of ME" from those of us who are experiencing permanent deterioration.

 

I would like to suggest to implement using stages/phases from 1 to 5/6 especially since there is no established term, maybe we could start a better description. Stage 1 being mild, stage 5/6 being profound.

Edit: Grammar/ words

 

It’s not completely unheard of, progressive MS is quite different from replasing-remitting MS.

But I agree that it’s not a good idea to suggest that some have a ‘milder’ or less serious form of ME/CFS than others, other than describing their degree.

 

Yes of course. To clarify, I just meant that we don't know yet, it's too early to draw any conclusions about whether there are different kinds of ME in this regard, and if so what makes the types different from each other, and can your type change over time etc. We just don't know.

 

My ME was originally mild and quite stable, bouncing back from massive exertions like finishing a master's degree, helping my partner through surgery, massive drinking binges and the exertion and withdrawal that came with it, head injuries etc (less proud of the last two haha).

But after doing couch to 5k and pushing myself to work sat up at a desk etc etc for 6 months it became deteriorative and severe frighteningly quickly. I have found some level of stability and clawed back some functioning since then but when I go outside of my limits for too long I deterioate hard for months sometimes.

Before/as I was doing the running I thought that severe people had ME and I had a partly psychogenic chronic fatigue syndrome, and running might make me more tired but did me good in the long run.

I have heard enough of these stories to think that 'stable' ME states can become deterioative and volatile with repeated triggering of PEM. And probably other triggers too.

 

@mango completely agree.

@V.R.T. I’ve also heard too many of those stories. I don’t think anyone can assume they are safe from deterioration.

 

I agree, I was very slowly deteriorating the first stage of getting ill. But I think I also had a phase of being more stable and one of relapsing.

 

Hi @DigitalDrifter I think I may be one of your tribe, but I want to understand a bit better what you mean by deteriorative. So I'll share my experience first, and then ask a few questions.

My experience: After a year and a half of improving and 6 months of being essentially recovered, I relapsed and for the next 10 years I got worse, working my way from mild through moderate to severe. Mercifully I stopped before very severe. I would jump down a level following overexertion like a medical appointment, be much more unwell for months, and then when the worst of that subsided I would find that I was simply a lot worse than I used to be. I had a new floor and a new, much lower, ceiling, which I bashed my figurative head against a lot, because I didn't know where it was. And that cycle continued, with the floor falling out from under me again, and then the scramble to figure out what I could safely do at this new level. For the past 4 years I have stabilised at the level I was after the 10 years of deterioration, ie the lowest level I've been. But I haven't had a substantial "worsening" of my ME/CFS in 4 years.

Healthcare professionals did believe me. But they didn't know why it was happening and they couldn't help. Some called me "atypical".

I found it hard that PEM was often described in terms of days, or phrases like "or even weeks", and for me it was weeks/months/years, and really a bit meaningless at that point because what was happening was better described as deterioration or worsening.

It was a bit frightening for me and my family.

To describe my experience when I was getting worse, I would say that my ME/CFS was deteriorating/worsening over time, and that my response to overexertion could last many months and leave me at a lower level than I was before.

I don't think any organisation gives a label to people with any illness who get worse over time. As others have said, MS might be relevant. There's primary progressive MS, where the person gets worse over time without any remissions. And there's secondary progressive MS, where the person starts by having some remissions, but then becomes progressive. My experience would be akin to the secondary progressive type. The term "progressive" wouldn't be appropriate for someone who gets much more ill for a year and then bounces back up to where they were or close to it - that would be relapsing-remitting.

Can you explain how this looks - is this sensory intolerance that gets worse and worse with every passing year, so that at any given point it is the worst it's ever been? Or is it sensory intolerance that can get significantly worse for weeks/ months/years after a trigger? Or something else? I'm trying to make sure I know exactly what you mean.

So if someone very mild climbs a mountain and gets worse, let's say to moderate, and stays there for 3 months and then goes back to being very mild, would they be in your category of deteriorative? Tell me more about how a deteriorative very mild person would present, so that I can distinguish them from someone with fluctuating or even relapsing-remitting illness.

 

I was thinking about sensory intolerance that gets worse due to exposure of the offending input so a consequential progression rather than a natural progression. I had to stay 11 days in a noisy hospital back in 2013 and it took me a year for my sound sensitivity to get back to baseline. I already suffered permanent olfactory and auditory sensitivity from the sleep deprivation and sensory exposure that I suffered between 2001 and 2013, by which point I already had to wear earplugs 24/7 because even the sound of my laptop's fan was too painful.

They would be a semi deteriorater. I assume that somebody who has to climb a mountain to deteriorate can safely hold a full time job and would be considered rare amongst ME patients.

 

I have been wondering recently about how much my lowered capacity is due to reduction of function because of worsening ME or deterioration due to increasing age. I will be 78 next month. I now think less quickly, write less coherently and am slower all round. I have become more conscious of it over the last 4-5 years.

I always imagined (on the basis of my life pattern) that I would be someone who retained cognitive capacity but it's not working out like that, or rather cognitive capacity is reduced. Of course cognitive impairment is a symptom of ME and I have severe orthostatic intolerance which won't help, but I have a sense that it has become turbocharged over the last few years. Is age playing a part?

I have experience of mild ME where I could work 4 days a week explaining to myself my energy issues as lack of stamina. Then a sudden onset of severe ME where I couldn't leave my bed for a while and gained a diagnosis of ME, slowly improving to moderate ME where I could be reasonably independent then a slow descent into more severe and dependant ME speeding up as I got older. I find it hard to disentangle the deterioration of worsening ME and age.

 

OK, I understand, so what you mean is a deterioration with a clear trigger. Many of my steps down during the 10 years of deterioration had a clear trigger, but some didn't. One of the worst was triggered by being exposed to unbelievably loud building noise for about 20 mins - like your hospital experience, my sound sensitivity was shot for a very long time after it, as was the rest of me.

Given that what you and I have experienced is akin to PEM that lasts, and we already have the term PEM, it might be best to try to link to that term with something like "post-exertional deterioration" and in the case of sound and things like that "post-exposure deterioration", with deterioration defined with some kind of timeframe. Realistically, however, I think that that term would remain opaque and a narrative explanation is probably better, something like (for me, yours will be different): "My ME/CFS deteriorates over time, with most steps down triggered by exertion beyond my limits or exposure to things I'm sensitive to like noise. A medical appointment can trigger a marked increase in my symptoms and reduction in my functioning lasting up to X months, and leave me at a lower level long-term. Often I am still trying to recover from one trigger when the next hits." While that was true of me for 10 years, I don't have the same reaction to triggers that I used to. So it can change, even if it's been going on for a very long time.

Lots of people eg MEA and NHS materials use the term relapse for deteriorations that last a long time, and say they're often triggered by exertion. I was never keen on that for describing what was happening to me as I felt "relapse" described when I went from almost completely recovered to sick again, and relapses that follow each other in quick succession such that the person is just getting worse over time aren't really what the term relapse is for. But I can see that "post-exertional relapse" and "post-exposure relapse" might be more readily understood by healthcare professionals in the case of deteriorations that maybe last a long time, e.g. 6 months or a year or more, but do eventually abate, as in the case of someone who doesn't just keep trundling downhill inexorably. I still think a label won't explain it all and a bit of narrative would be required e.g. "This patient is particularly prone to significant relapses lasting 6-24 months following triggers such as a hospital stay. Exposure to noise is a particularly potent trigger and everything needs to be done to minimise exposure to noise during hospital stays."

Certainly patient organisations and healthcare organisations could do a much better job of acknowledging the existence of people who experience this.

And what makes it "semi" - is it that their deterioration only lasted 3 months? Or that it took such a big trigger? I guess I wouldn't see that person as similar to me. I would see them as just still having ME/CFS, despite being able to live a very normal-looking life. This is how it is. You pay a ridiculously outsize price for exerting outside your limits. If they go back to how they were before, and stay well for, say, a year, despite plenty of potential triggers, then I just see them as someone with very mild ME/CFS, who can have relapses that mean they temporarily have moderate (or whatever severity) ME/CFS.

 

Just to be clear, the diagnostic void in the title of my thread was aimed at permanent deterioraters - patients who get worse from a known trigger (such as exercise) and never recover. It is rarely mentioned in ME advocate publications and I have never met a medical professional who has believed me when I say I am permanently damaged by exercise. My oldest permanent deterioration was triggered 18 years ago.

I think it would be beneficial if ME had such distinctions, the ME Association talk about ME being fluctuating with relapsing / remitting ME, there should also be a name for permanently deteriorative ME.

Not a bad suggestion.

It's the duration not the size of the trigger, again it's an arbitrary cut off just like some criteria say you need to have symptoms for 6 months to get a diagnosis of ME. Until medical knowledge improves, it's the best we can do.

 

This is really powerful. Severe and Very Severe seem to be farmed out to their own special leaflets. Including them in this way is easy to do.

 

Yes. It’s really powerful to simply acknowledge.
And the contrast shows the damage that the erasure or ignorance of very severe can do, in that constantly at every sentence of the webpage, it will give people the impression the person can do more than they can actually can.