Unintended Consequences of not Specifying Exclusionary Illnesses for SEID (Jason 2015)

[Mij]

People with very severe ME are in that state constantly. Some do kill themselves as a result of this 24/7 torture.

I am aware of this sadly. Is it PEM or the illness itself?

How can we compare these poor souls to people who are saying they are in a constant state of PEM and working full time? It's not delayed so the term PEM would not apply

 

[Sidereal]

I am aware of this sadly. Is it PEM or the illness itself?

I suppose we won't know until someone figures out the metabolic signature of PEM.

 

[Bob]

I understand the important implications for researchers and clinicians who have an understanding of M.E/SEID.

From what I'm reading is that it's not delayed/post for everyone, for some it's constant and yet some are able to work full time in a constant state of "PEM". Is it because they don't have OI? Is it the OI patients that have worse PEM?

How can their PEM be the same as what I'm experiencing when mine is delayed for 16hrs and I"m unable to stand upright, slurred speech, racing heart, unable to put 2 sentences together etc etc? If I were in that constant state of I would eventually end up in the emergency room. PEM for me is a very distressful physically and emotionally. I can't imagine being in that constant state. I would kill myself.

If it's an exacerbation or amplification of symptoms then why not just say that? The patient can be aware that constantly overdoing or pushing/crashing is not advised.

I think these are interesting observations and questions.

My own experience of PEM is different to yours Mij, which I think demonstrates that ME/CFS is either heterogeneous, or it's homogeneous but the symptoms vary from person to person. (Many of us seem to have a slightly different range of symptoms but with significant similarities, and remarkably similar difficulties with our lives.) And, of course, each person's range symptoms can vary quite dramatically over time.

I wonder if my own experience would shed any light on the issue... I never used to have any OI symptoms, at all, and PEM would be an exacerbation of my illness. So, PEM wouldn't be any different to my usual symptoms - it was simply an exacerbation (of varying severity) that could last days, weeks, months or years. A complete nightmare because a stupid single activity or event could knock my health back years. My symptoms were relatively straightforward in the early days - I experienced exhaustion, flu like malaise and severe brain fog, but no other complications. Brain fog was possibly my biggest complaint because it robbed me of my memories, imagination and brain power. (Things are different now - it all suddenly changed a year ago, when taking some probiotics, and now I get exhaustion, malaise, and all sorts of complications including widespread pain, joint inflammation, IBS, and mild OI, but relatively less in the way of brain fog.)

Mij, where you ask whether PEM can be described as 'delayed onset' if people experience it all the time, the answer can be yes, because... My PEM was delayed but long lasting, and accumulative. So I could still be experiencing the previous exacerbation (set back), but then do something stupid again to cause yet another flare up. So I would notice the delayed exacerbation because it would make things worse than what I was already experiencing, despite already experiencing PEM. The only way for me to avoid a set back was to rest rest rest and pace pace pace, on a permanent basis. I would rest immediately after a set back, and then slowly increase activity levels when safe to do so. The severity of a PEM set back could also vary considerably. But, yes, I suppose it could be said that I was in a permanent state of PEM, to varying degrees, so that's why 'post exertional exacerbation' is a better term for my own experience.

I don't know if my personal experiences help to clarify some of the differences at all?

If people are able to work but then crash at the weekend, then I'm not sure if that's the same sort of PEM that I experience. It might be a milder version of the same illness, but my PEM is hideously reactive and long lasting. I recognise the experience of getting by on adrenaline; I've done it from time to time since being ill, and then crashed afterwards.

 

[Snowdrop]

PEM has always been confusing to me. Like Alex I spent decades not having heard of ME and always at the edge of the energy envelope trying to live my life. Like Effi I am now constantly at the edge just doing almost nothing.

Maybe 'symptom exacerbation upon exertion' would be better. With the understanding that SEE is a sliding scale.
PWME with mild symptoms get SEE with a much higher level of exertion than people who are severely debilitated.

 

[Mij]

@Bob ah, I'm understanding your situation better now, thank you.

 

[Scarecrow]

.

From what I'm reading is that it's not delayed/post for everyone, for some it's constant and yet some are able to work full time in a constant state of "PEM". Is it because they don't have OI? Is it the OI patients that have worse PEM?

There have been two periods in my life where I have worked or studied while in constant PEM. The outcomes were very different.

The first was while I was at university before I knew I had ME. At that stage, there had been no infectious trigger (yet) but I'd had severe IBS several years earlier and that was the start of my problems, subtle at first. In a six month period I went from a state of basically being abnormally tired in varying degrees for some unknown reason to accumulating one new symptom after another because I kept pushing, pushing, pushing. In mid January I had a chest infection. I went to my GP, he gave me antibiotics and from then on I can recall nothing for about the next ten days. Complete amnesia. I went to at least some of my lectures, though. Nicely dated notes but otherwise totally incoherent. When I 'came to', it was clear that I was even worse than I'd been prior to the chest infection. I wasn't able to go back to lectures (absolute mince for brains, could barely read a word let alone a sentence) and eventually I withdrew from my course. I can't say what would have happened without the infection but the situation definitely wasn't sustainable.

While I was going through all that I had no idea that there was any connection between activity and symptoms. Only when I'd had the chance to rest did it became obvious. It was also apparent that I was often worse the day after doing more than usual.

Fast forward about twenty years, which was five years ago. For about ten years during the intervening period, I'd recovered enough to be able to play sport but I wasn't in full remission. Then for a couple of years prior to the relapse I'm about to describe, I couldn't sustain anything above a walk but I was otherwise stable and not particularly symptomatic.

So, during this particular January, my desk was moved to a hotter part of the office. Like a lot of pwME, I don't tolerate heat well and I started to sleep very badly. Three months later I was almost fully symptomatic again. And I got worse and worse because I had to keep working. The difference between then and the first time was the internet. I found the ME Association survey on treatments. One of the most highly rated for efficacy and safety was Perrin; it's no cure but it saved me from what was otherwise inevitable.

How can their PEM be the same as what I'm experiencing when mine is delayed for 16hrs and I"m unable to stand upright, slurred speech, racing heart, unable to put 2 sentences together etc etc? If I were in that constant state of I would eventually end up in the emergency room. PEM for me is a very distressful physically and emotionally. I can't imagine being in that constant state. I would kill myself.

If you are being constantly challenged and working 7.5 hours a day, there's only exacerbation. Who can tell what is immediate post or delayed post? The weekend is a relief but not long enough to recover. Slurred speech? Yeah, been there. Every day when in constant PEM. Imagine the sideways looks from your colleagues, especially when you also can't walk in a straight line, are easily confused and slow of thought. Distressful physically and emotionally? Very.

In all honesty, though, I don't view ME as a competitive sport. I don't doubt that your PEM is worse than mine has ever been, even after mine has been accumulating day after day for months on end. I'm not unbreakable but I appear to be relatively robust as pwME go.

some are able to work full time in a constant state of "PEM". Is it because they don't have OI? Is it the OI patients that have worse PEM?

I think you're onto something here but I don't believe it's the full story. I survived what turned out to be five months of deterioration/constant PEM and improved again without going off sick from work. But earlier this year, I crashed badly and my ANS got battered. I went from being able to walk a couple of miles comfortably to being barely able to stand long enough to make myself a cup of tea. I've been off work for months. During this period I've had a sore throat often but it has generally stopped short of going into fluey symptoms, so there's not a lot of obvious signs that my immune system is going bonkers.

FWIW, I don't currently get what I consider to be classic delayed PEM, which I always think of as involving malaise (feeling fluey) as well as delay. But I get delayed fatigue and impaired cognition. Post exertional malaise may not be a very helpful term.

 

[Dolphin]

People have posted some short descriptions of post-exertional malaise/similar from the IoM report.
Just to point out for anyone who hasn't read it (or who has forgotten) that many pages are spent describing it and the evidence surrounding it. See pages 78-86 in the pdf available at: http://iom.nationalacademies.org/Reports/2015/ME-CFS.aspx

 

[Dolphin]

Note the asterisked bit (which I believe is mentioned several times during the report)

* Frequency and severity of symptoms should be assessed. The diagnosis of ME/CFS should be questioned if patients do not have these symptoms at least half of the time with moderate, substantial, or severe intensity

 

[Dolphin]

Study 1:

To meet the post-exertional malaise criteria, a patient would need to have indicated presence of at least 1 of our two post-exertional malaise symptoms: sickness/fatigue for >24 h after exercising or experiencing high levels of fatigue after everyday activity.

Study 2:

To meet the post-exertional malaise criteria, a patient needed to have 6 or more months of post-exertional malaise.

Study 3:

To meet the post-exertional malaise criteria, a patient needed to report the occurrence of one of the following symptoms: prolonged generalized fatigue or malaise following previously tolerable levels of exercise, feeling generally worse than usual or fatigued for 24 h or more after exercise, or exercise brings on my fatigue.

Study 4:

To meet the post-exertional malaise criteria, a patient would need to have a frequency of at least some of the time and severity score of at least moderate to indicate prolonged levels of malaise following previously tolerated exercise.

So only Study 4 has the required severity ("at least moderate"). None mention that the symptom is required "at least half of the time".

Study 3 is the one from which the estimate that SEID would be 2.8 times as common comes.

 

[Dolphin]

From study 3, the random digit study (arguably the most interesting in some ways):

As indicated inTable 3, 75% (n= 24) of those in the CFS group met the SEID criteria

This figure would likely drop with the more demanding frequency and severity cut-offs the SEID criteria require.

 

[Dolphin]

Some information from the discussion section on distinguishing ME/CFS/SEID and major depressive disorder (not based on new data in the paper):

The current study suggests that some patients with MDD, who also have chronic fatigue, sleep disturbances, and poor concentration, will be misdiagnosed as having SEID. MDD can occur for anyone with a serious medical illness. Some patients might have been depressed prior to becoming ill with SEID, and probably others as a reaction to this illness [23]. However, patients with CFS have symptoms including night sweats, sore throats, and swollen lymph nodes, that are not commonly found in depression, and illness onset with CFS is often sudden, occurring over a few hours or days, whereas primary depression generally shows a more gradual onset [24,25]. Hawk, Jason, and Torres-Harding [15] were 100% successful in differentiating patients with CFS and MDD using the following variables: percent of time fatigue was reported, post-exertional malaise severity, unrefreshing sleep severity, confusion/disorientation severity, shortness of breath severity, and self-reproach.

 

[Dolphin]

In the limitations section it says:

As we used archival data sets, some of the questions that have been proposed to define SEID were not available. Clearly, the current study needs to be replicated with questions that are now proposed [7], however, our questionnaires were able to assess that vast majority of issues and domains within SEID. [..] The new SEID [1] criteria suggest frequency and severity ratings, many of which were not available from the data sets reported in the current study, so it is possible that some occurrence ratings selected less impaired individuals and inflated the number of patients meeting SEID criteria.

It's good it says it. But it would have been better if it had spelled out what the IoM criteria say regarding frequency and severity and also mentioned the problem earlier in the paper also.