PEM for those who are, or were, mild sufferers, how would you describe it?

Andy

Andy

Retired committee member
So one challenge that I believe we face is that if most, if not all, research studies insist on PEM as part of the inclusion criteria, we run the risk of mild sufferers not recognising PEM for what it is.

For example, CCC description of PEM
There is an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability, post exertional malaise and/or fatigue and/or pain and a tendency for other associated symptoms within the patient's cluster of symptoms to worsen. There is a pathologically slow recovery period–usually 24 hours or longer.
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and ICC description of PENE
Postexertional neuroimmune exhaustion (PENE pen’‐e): Compulsory
 This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions. Characteristics are as follows:
 1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.
 2. Postexertional symptom exacerbation:e.g.acute flu‐like symptoms, pain and worsening of other symptoms.
 3. Postexertional exhaustion may occur immediately after activity or be delayed by hours or days.
 4. Recovery period is prolonged, usually taking 24 h or longer. A relapse can last days, weeks or longer.
 5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre‐illness activity level.
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I would not have recognised these descriptions as describing why I would need to take occasional days off from work to recover from what, at the time, I best described as a heavy 24-hour cold.

Now not all studies will want to recruit mild patients, so it won't be an issue all the time, but for those studies that do it could be useful to look at alternative ways to describe PEM.

So, as the title says, if you are, or have been, mild, how would you describe your episodes of PEM?
 
Andy said:
So one challenge that I believe we face is that if most, if not all, research studies insist on PEM as part of the inclusion criteria, we run the risk of mild sufferers not recognising PEM for what it is.
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I think its also important to understand good language to use to describe it. I worry that PEM may not be a meaningful term to many patients who don't spend time looking at ME information. The descriptions in the guidelines sound quite technical and I suspect are aimed at doctors rather than ordinary people.

Ideally we need short concise descriptions that would resonate with how people would describe PEM (or not describe it if they don't have it). It needs to be short to help with an overload of potential other questions.
 
Andy said:
I would not have recognised these descriptions as describing why I would need to take occasional days off from work to recover from what, at the time, I best described as a heavy 24-hour cold.
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It was a challenge to recognise it within myself, let alone for anyone else around me to notice it or take it seriously. I would have described it as feeling somewhat 'under', or as if coming down with something for a few days after exertion, usually lasting three days, before returning to baseline level of crappy function. I knew for years I had an inability to repeat the same amount of exertion on consecutive days (unlike others around me) and needed a lot of time off to 'recover' from relatively minor stuff that others could shrug off but I had no language to describe it and I didn't seem overtly sick or incapacitated so it was always put down to weakness, lack of fitness, laziness etc.
 
When I was milder and going to school, there was a particular pattern of attending school normally for several days or a week, but eventually feeling unwell and staying at home to rest. Then I would soon feel better and return to school, and the pattern would then repeat. Over time, the good periods shortened, the bad periods lengthened, the time needed to recover increased.
 
It feels very similar to flu, but without the snot.
Muscle, bone and joint aching/pain.
Dizziness and vertigo which produce nausea.
Weakness and loss of stamina.
'Poor' coordination.
Gastro symptoms.

There are many other symptoms (i.e. decrease in cognitive function, 'head pains') but think serious flu and it's fairly close.

If I let the level of 'painkillers' drop in my system then the weakness and vertigo increase to a level where standing up, in any fashion, becomes.....a problem. Without them I become almost totally non functional when experiencing more than routine PEM.

In the early years, when I had no idea what was wrong, I would start a new job and over the next few weeks become increasingly non functional, unable to sleep (when appropriate), and increasingly sick. probably the first 'understandable' symptom was a throat pain, a bad cough, leading to reduced ability to function physically, and vertigo. I would continue to try and work until it was impossible to. I would then lose from days to weeks where I have little memory.

I eventually came to the conclusion that for some reason working beyond a certain point made me physically ill.

I did not connect any of this with the increasing cognitive issues I was experiencing, it was just that from my point of view just that working made me seriously ill and unable to cope with anything else, until it was just work and bed (not sleep by that point, bed with occasional unconsciousness)..

So if someone is working, if everything else is being dropped to continue working, if they are becoming increasingly unable to even manage that, and feel seriously ill, if this is a repeating pattern, then it's possible they may be experiencing PEM and not recognising it.

It is also possible that they may need to change their crack dealer.
 
I am not/was not mild but I think the biggest thing I have repeatedly tried to get people to understand about the illness is that after 'over exertion' I don't just feel tired, I feel very ill.

The way that PEM seems to be often interchanged or confused with post exertional fatigue, (along with the overall emphasis on fatigue that I know we all hate), is the one of the biggest problems in getting this across.
 
strategist said:
The exact symptoms seem to be less important than the pattern and the impact on the person's life.
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Yeah I wouldn't focus on the symptoms patients have during PEM because this probably differs for a lot of us.

So I would focus on the payback/relapse/setback mechanism with statements such as:

"I always have severe setbacks if I overdo it."

"It feels like there's an energy limit to what I can do and if I exceed it, I relapse"

"Trying to push through makes me much worse"

"I can still do some physical activity but I recover poorly and have to rest for days afterwards."

Etc...
 
When my illness was much milder long ago I had issues with cognitive PEM. It too was much milder but had bigger consequences (mostly). So I would forget where I put things, occasionally left my car keys locked in the car and would enthusiastically start some project that needed/wanted doing and loose steam part way through. The project issue could be both cognitive and physical reasons.

None of that of course is how I felt. The feelings involved where a sense of confusion and some anxiety as a result. Also, frustration and a sense that things were not normal. That I could do better if only . . . Everything I did became a little harder to accomplish.

A bit more vague than physical PEM signs but still relevant I think.
 
Looking back over those undiagnosed years. Two aspects from the ICC could definitely have been identified 2 - symptom exacerbation. - flu like symptoms and 5 lack of stamina

I would have to spend most of a weekend in bed fairly regularly- maybe once a month. I would have flu type illness every two or 3 months. About 15 years ago I reduced my hours so I could have a day off on Wednesdays so I only had to work 2 consecutive days. I ceremonially burned the document which showed my sick absences over the last 10 years of work so I can’t give accurate info but apart from the latter long absences I had a lot of odd days, some weeks and at times had to get signed off and needed 2 or 3 weeks off. There was a lot of viral infection laryngitis.

I definitely cut back on socialising because I didn’t have the stamina.

it is very hard to see gradual onset ME at the time through perhaps having had several glasses of wine on a Friday night and then when you spend the weekend in bed you think it’s normal. When you get the flu type symptoms, laryngitis you think it’s normal. If it’s frequent it’s because you’re working hard and have caring responsibilities and that’s getting you down which affects your immune system. That’s what you think is happening.

I would say it’s only in the last 4-5 years that I’ve had 1 under ICC of drastically running out of energy whilst doing activities.
 
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Sly Saint said:
I am not/was not mild but I think the biggest thing I have repeatedly tried to get people to understand about the illness is that after 'over exertion' I don't just feel tired, I feel very ill.

The way that PEM seems to be often interchanged or confused with post exertional fatigue, (along with the overall emphasis on fatigue that I know we all hate), is the one of the biggest problems in getting this across.
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Yes! Good way of putting it. Seems obvious now that you've said it, but it's something I've been struggling to articulate for a long while now, and people who don't have it really struggle to understand because of the ridiculous "chronic fatigue" labeling.

When I have PEM, I'm not tired, I'm ill. I'm ill in the same way that I'm ill if I have a bad cold, or flu, or some other virus, that saps my ability to function and concentrate. Headaches (sometimes the sinus type), allodynia, sore throat, my tongue often swells up, swollen lymph nodes, etc etc. All the things that you'd expect from a person whose immune system is reacting to an acute physical illness.
 
Gradual onset. When I could still work, I had:

A feeling of physical exhaustion that didn't match with what I did on that day. Which led me to cancel more and more of my social activities, until I was only going to work and heading home, dreading every additional activity like shopping, cooking, cleaning.

Even if I did nothing but rest on the weekend, it wasn't enough to recover to former baseline.

Frequent infections (more than once a month): upper respiratory or gastro-intestinal.

A feeling of weakness in my upper back, as if there was a hole punched into me, and no bones or muscles to hold me upright.

A need for more than 9 hours of sleep. Feeling like a zombie when waking up.

Joint pain, without signs of inflammation.

Easily out of breath.
 
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My symptoms had changed so much within a year. I noticed this because of this thread.

In the old days:
Severe dizzy spells with nausea
flu like symptoms
sore throat
unable to stay upright

later on few years addition of those:
dihaorrea
bloaed
more nausea
back pain, indigestion

recently non of those above except nausea and unable to stay upright
but:
sudden chemical depression
a heavy feeling
unable to speak and listen
and when need to speak feeling unpleasant and panicky
heavy legs, pain in the back of the legs though energy levels feels fine

I seemed to be more able to do stuff, chores but cognitively I'm terrible. I don't want to interact with humans, cats are ok though.
 
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