LTSE - Long Term Symptom Exacerbation - Type 2 ME or New Diagnosis?

As far as I'm concerned most of the medical profession don't believe in LTSE and most researchers don't mention it (I've never seen a published paper that describes it).

There's not anything there about damage from exercise or LTSE. It seems that ME is just not defined that way in majority opinion.

 

I don't think they take cognitive decline into consideration which may not even be noticeable until years later.

 

I think you have to be aware that clinical definitions of diseases are not deigned to be a comprehensive description. They consist of the features that distinguish that condition from other problems or normality.

In other words, no definition of multiple sclerosis includes the inability to walk although that is a common enough feature.

No definition of ME is going to include a requirement for damage from exercise because that is unprovable, certainly in an individual case. That does not in any way detract from the fact that pretty much all of the biomedical minded community - who are the people who think ME/CF is a real category - think that exercise can cause harm.

And yes, mot of the medical profession may not believe in ME at all, but they are not really relevant if we are talking about dividing ME into subcategories. All sorts of Royal College have put their hand up in horror and said that UK NICE has invented a new disease. But presumably the is on the basis that all there is is 'chronic fatigue'.

 

I don’t think we have a basis for identifying a separate disease, but I do think there needs to be more research into why some patients progress to severe and very severe symptoms some years into their illness.

In my own (N=1) case, a bad episode of PEM provokes ongoing deterioration that generally lasts about a year, followed by stabilisation and then an almost imperceptibly slow improvement over about two or three years that stops below the previous baseline, then a year or two at that new lower baseline before the cycle begins again. The result in my case is progressive ME punctuated by worse months and (relatively) better months. Over my forty years with this illness, this has taken me from oscillating between mild/moderate to oscillating between severe and very severe. At the start of my illness I looked very much like a typical ME patient, and now I look very much like a typical severe ME patient. Different parts of the same elephant I think, at least in my case.

 

Very much my experience too.

My relapses can be associated either with single episodes of over exertion, where I feel it is easier to attribute a causal relationship, or following periods of general increased activity during a spell of relative good health when it is harder to attribute a causal relationship or even be certain of the direction of any causality, or involve a more gradual decline.

 

I use to think I way back when I was mild and misdiagnosed as having Fibromyalgia. I thought my doctors couldn't figure out what was wrong, I might progress no matter what. So I thought I'd treat my self to a car (I'm a car freak). Biggest mistake I ever made, every time I drove it, it caused a permanent worsening of my ME. I crippled myself pretty badly. I went from being able to walk 1 hour 15 minutes a day to just 15 minutes a day, my wrists were pretty injured too, I don't remember the exact numbers but it severely reduced my daily typing capacity.

I now know that exerting myself beyond my injury threshold causes permanent worsening.

 

I am not sure what the quote from Ramsay is but when I was first diagnosed he was still medical adviser for the ME Association and the way I do not know I have done too much until I have symptoms 3 days later I can't remember being unusual.

He never defined the disease he described it which was common in medicine then. He said symptoms were variable and there was an abnormal response to exercise which the CDC changed to PEM. At least I always thought they threw that in as a sop to the people saying the Tahoe outbreak was actually ME. I can't remember them actually doing anything about it, just the emphasis on continuing fatigue that persists today.

He described a typical patient, a fellow doctor, who would work for a month or so then collapse and need weeks to recover then start the cycle over. That does not match with recovering in 3 days so muscles recovering from fatigue in 3 days may be a different context than the way we talk about PEM.

He also said that from the outbreaks a quarter recovered, half had a variable course and a quarter deteriorated.

As we find more evidence of what happens to us when we go beyond our healthy limits we will get a scientific way of talking about PEM and more understanding of outcomes and how to prevent permanent deterioration.

 

Here's another example from @Simon M 's blog describing PEM as short term.

https://mecfsresearchreview.me/2020/09/17/understanding-long-covid-a-shortcut-to-solving-me-cfs/

As a sufferer of LTSE that has lasted for 15 years so far it makes me feel invalidated.

 

My thought processes can be very slow these days. I got caught up in a point about this thread and not the basis for it, sorry.

I have never thought of the permanent drops in ability as LTSE, though it might be a good name for it. I think my confusion was because PEM was not talked about as such in the days I was getting worse.

Right from the start I felt it was accepted that there were things that could happen which could reduce the capabilities of someone with ME permanently.

For myself, in the years before I was diagnosed, I had the flu twice and each time I was left with worse ME which never recovered. In 1990 I thought I was better and walked too much to build up my strength (and just plain enjoy it!). I had a sudden dramatic collapse and have needed a wheelchair to walk more than a handful of steps ever since.

The idea is not controversial. Like many things, high level, medical neglect means we do not yet have the vocabulary to properly describe what happens to us.

 

I'm sorry to here that you never recovered from that LTSE. I think it's important that we sort out the correct language to explain what we experience. It is demoralizing to see that LTSE isn't usually talked about when health care professionals or researchers discuss ME. Almost as if us LTSE sufferers have been ignored for decades. I believe describing ME without mentioning LTSE has made life very difficult for sufferers such as my self because it promotes disbelief in the severity and permenance of my illness.

 

I think that all this terminology needs clarifying but in a 'process list' type format (diagram or something).

We've got PEM, and rolling PEM (which is effectively the state in which most with ME probably have to live in), and those in rolling PEM can have 'PEM' on top of that. Then there is crash and relapse - both of which got warped by Crawley trying to use one term 'flare' for them - which makes it sound like whatever it is will go away. But, there is definitely a situation where having to carry on in a situation where someone is struggling through above baseline for 6-12months ends up in a permanent deterioration.

This is why the 135 day was so important.

Because you manage the 'keep going' - because of the unwelcoming world around us - level of pacing, but never 'rest off' the full excess and it then seems to suddenly come and take the feet out from underneath you. Permanent, or just bed-bound for years to think you are back to the same lowly level you were before (but are actually a heck of a lot more careful and it might just feel 'better' because it is relative to being so much worse anyway) is still pretty close to medical profession needing to call it permanent rather than their temporary inferences (because it wont' recover 'on its own' without massive life adjustments noone else would want to do).

I suspect those who are more severe get this effect at levels of exertion people might call just 'PEM', but it actually 'relapse' (poor term because if it is a new level of worsening you haven't been to before it isn't really 're-' anything?).

Diagramming these stages out, getting a set of words that 'Russian doll' each other, and then probably having in said diagram 4 rows for the 4 approx stages/level of severity, with the exertion-->PEM (3-21days), exertion w/o rest --> crash (14-150days) or whatever underneath might one day be quite useful to get mapped out? Might help with research planning/fitting findings into a schema of 'what does that mean/how does it contribute to the big picture'?

 

Just did a Google search for: "Permanent Relapse" CFS

It yielded just 22 results.

 

It is important point out, that like medicine and researchers’ failure to recognise the existence of severe ME, there is a disregard for the fact that ME can get worse as well as improve.

 

Just checked the Wikipedia article for PEM (https://en.wikipedia.org/wiki/Post-exertional_malaise) and it says PEM lasts for days, no mention of LTSE.

Any volunteers to update the article?

 

https://www.meresearch.org.uk/what-is-me/

No mention of LTSE, why?

 

Scientific papers on LTSE are lacking. It's a hard subject to research because it can be hard to tell if overdoing it was the cause, or someone just got unlucky.

 

Because it's not a symptom.