PEM discussion thread

https://www.youtube.com/watch?v=q_cnva7zyKM

 

If some one is not experiencing PEM we can not say they have ME, given we are currently pushing for PEM to be necessary for an ME diagnosis.

There are situations where this may be confusing, for example I had a period of what I believed to be full recovery from ME after some four or five years from my initial onset. I then, over a number of years, increased my activity levels to more or less premorbid levels. Then I had a major relapse associated with a bout of flue. So it becomes a matter of definition whether I had still ME but without PEM during the period of remission, or if I did not have ME but had retained a susceptibility to ME.

I would argue that it is OK for people to increase activity if they do not experience PEM, but that if there is any reason to consider them at risk from ME that such increase should be undertaken with supreme caution.

So @Mij I would argue you are not taking about people with ME but about people at risk of ME, so they should have a clear understanding of PEM and approach any increase in activity with caution, but at present we do not know enough to say they should indefinitely restrict actively levels when they experience no adverse consequences.

 

@Peter Trewhitt

What do you mean by 'at risk for ME". How do they determine who is at risk and who can increase and who can't? "PEM"? Why give advice regarding exercise in the early stages when they don't understand PEM to begin with?

The marathon runner in that video I posted was capable of training for a race for six months and became worse.

 

No, not at our current level of understanding, I wouldn't agree. Otherwise, how would we know when it's safe to increase our activity levels? What other option is open to us at the moment? You seem to be suggesting that we keep permanently to whatever level of activity initially didn't provoke PEM.

 

If someone is not experiencing PEM, they do not by ‘current’ definition have ME. If the video marathon runner was not experiencing PEM during her training she did not at that point have ME. If she did experience PEM during training then she was being very foolish or was very badly advised.

If we subsequently identify a biomarker and it is present in both people who experience PEM and people who do not we might then want to change the definition of ME, but we do not have such a biomarker at present.

You are presumably postulating she had some underlying condition that is on a continue with ME, which I am referring to as ‘at risk of ME’. At present we do not know who is at risk of ME, though I would include anyone who has previously had the symptom of PEM or has previously had ME or other post viral fatigue conditions.

 

There is a big difference between increasing level of activity and increasing level of "fitness'.

 

Both positions are 'not sensible' - I think.

I have diabetes, simply because my BG levels are not raised at some point does not mean that I don't have diabetes. (They are)

I am also asthmatic - simply because I am not currently mid attack does not mean I don't have asthma.

So, if I was not currently experiencing PEM, that would not mean that I no longer have ME. (I am)

 

How? Increasing fitness comes from increasing activity levels.

 

Surely the whole point of giving people advice on activity levels in the early stages is to ensure we do understand post exertional malaise.

My ME would have been much easier if I had been told about PEM at least a decade before I came to understand the concept, just as management of my symptoms would have been much easier if I had been equipped with an understanding of food intolerances and of orthostatic intolerance fifteen and twenty years respectively before I did.

 

You can measure some aspects of diabetes when not in a hypo, and you can asses lung capacity when not in a full blown asthma attack. We have more understanding of the underlying pathologies of these conditions, so direct comparisons with ME are not straight forward.

People with ME who do not experience PEM only achieve this through deliberate activity management. However it would be very unusual for someone to never experience PEM as most of us are seeking to operate somewhere just below the PEM threshold.

However I would say that someone who never at all experiences PEM, is either very very skilled at activity management or does not under current definitions have ME, especially if they are undertaking average levels of daily/weekly activity.

However if someone has previously experienced PEM or previously had ME, but no longer currently fits the definition of ME they should still be very cautious about pushing for higher activity levels.

[added - @Wonko , I think you might have misunderstood what I meant when saying not currently experiencing PEM; I did not mean not currently in the state of PEM, which would not make sense as people then would be considered as dropping in and out of ME as they dropped in or out of PEM. I meant if you currently never experience PEM we can not say with any certainty that you do have ME, and if you are not restricting your activity levels then you definitely do not have ME under current definitions.]

 

Whether someone fits the 'current definition' of ME or not doesn't mean they don't have ME, particularly in the early stages. I didn't experience PEM for 10 years, but I clearly had ME and now going on 30 years. It was in the cards from day one. That is my experience.

The marathon runner wasn't advised, she decided to train on her own b/c she thought she could 'beat it'. I'm sure pwLC will feel the same if they're given improper advice on increasing their level of fitness if they don't experience their version of "PEM".

 

Yes, I agree.

"If you don’t experience PEM, you can gradually increase your level of activity or exercise to improve your fitness levels"

They also include exercise.

 

Please don't take this as arguing against the point that you are making. I'm just trying to understand what symptoms or test results did you experienced/had in those 10 years pre-PEM that indicated you had ME? I'm trying to understand how we would diagnose ME in the stage before PEM develops whether its 3 months or 10 years.

A relative had COVID in March 2020 and for maybe 9-12 months, it wasn't clear that she had PEM and on that, felt she did not have ME.

 

I had a sudden viral vertigo onset and 'extremely' elevated anti-thyroid antibodies 6 months after onset. Had a thyroid scan and was told I had a viral infection. I 'recovered' from the initial virus 9 months later only to have a major relapse shortly after returning to work. So 1 1/2 years later I saw an ME doctor who sent me to a neurologist to r/o MS. Had blood tests, testing for BVVP, auditory brain stem test and some other things.

The ME doctor dx me with PVFS/CFS and told me I was 'atypical ME' based on his 20 years of experience seeing ME patients, he told me that I would most likely recover in a few years. He also advised me not to exercise, and that it was better not to do too much even when I felt better.

I started improving slowly over the course of 10 years and felt well enough to start exercising again. The PEM started when I exercised and I slowly got worse, it also affected my cognitive function which never bothered me before.

To add

I did activities such as cooking, reading books, knitting tons of sweaters, walking a little, talking on the phone for hours etc with no PEM in that 10 year period. I was homebound but not as disabled as I am now. I didn't have orthostatic impairment, insomnia, pain or cognitive impairment- I was quick as a whip and had no issues with complex problem solving.

 

I test my limits regularly, but carefully. Just recently I retested uniquinol at 400mg in a single dose twice a week, and got much more benefit than 100mg every day. I see this a lot. There are biochemical tipping points and switches I would like to understand how to trigger.

There are risks from muscle deconditioning but they are not a big concern. We know how to recondition muscles. We don't know how to recondition bone, and gravity and exercise stressing bone are great ways to slow bone deconditioning.

We mostly have only anecdotal evidence for how to manage all of this due to decades of pathetic science funding. I use observational markers like panting from overdoing things (sometimes it takes almost nothing to get there) in order to decide I am at my limits. Resting in a relapse seems essential, but for how long? How do we know when its safe to do a bit more? We have questions, lots of them, but science does not have answers ... yet.

On a good day I automatically do more, on a bad day less, but we need something better in medical guidelines.

Long Covid is in the same position as ME is. That will change, given the interest in research funding, but huge amounts of that funding will be wasted testing things that do not work. (Psychobabble, I am looking at you.) Hopefully LC researchers will investigate things that help us too.

The medical groups giving advice on LC are in the unenviable position of not actually knowing what to do, so everything is hypotheses. We somehow consider that ethical.

 

Exactly this. I'm able to power walk for one hour 2 to maybe 3 times a week depending on how I feel. But I don't know whether that is a good or bad thing to do. I don't think I feel worse off, but who knows really? So I cut my walking to 40 minutes and live on hope that it's ok.

 

Thanks for sharing that @Mij. that was helpful.

 

Right? Exercise is just increased activity over and above 'normal' life activity.

 

@Andy

Can you understand how this might be misinterpreted by some? Do the 'experts' on "PEM" understand that PEM (as defined by the ME community) is life long?

As defined by the Heart Cardiovascular Institute:

Exercise vs. Physical Activity
According to the American College of Sports Medicine and the American Heart Association the following are definitions of physical activity, exercise, and cardiovascular exercise respectively:

• Physical activity is any movement that is carried out by the muscles that require energy. In other words, it is any movement a person does.
• Exercise is, by definition, planned, structured, repetitive and intentional movement. Exercise is also intended to improve or maintain physical fitness.
• Cardiovascular exercise, by definition, is any exercise that challenges the heart and vascular systems to increase the heart’s ability to pump blood and distribute oxygen to the tissues of the body.

 

PEM, or an abnormal response to exercise to be the cardinal symptom of ME. If you can live a normal life without it that is good but it would require exercising to exhaustion to show that PEM would never happen.

I was able to life an almost normal life (with symptoms but little fatigue or PEM) for the first 4 years of my illness except that I was not in control of my own life as a teenager who did not look very ill.

When my parent's wanted the garden weeded they did not listen to any excuses so I did it and then crawled upstairs to my bedroom. Or the dreaded "It's a beautiful day you don't want to be stuck in that bedroom, let's go for a long walk."

If some people do have an abnormal presentation of ME they will be discovered best by having a diagnostic test. But a diagnostic test will be found most easily by looking at typical patients with PEM.

Dropping the requirement for PEM leaves the door open for the dreadful situation we find ourselves in where things that work for people with burnout or a time limited post viral are confusing the issue.

As more and more diseases are being found to have "PEM" or even CFS the more we are neglected.