Sen et al: Systemic exercise intolerance disease: What’s in a name?

[Sidereal]

Then CFS seems more appropriate than PEM which is one symptom.How long after the exertion is the exacerbation supposed to occur so that it would be clear that it is cause and effect and it is not necessary to look for other mechanisms or environmental factors or even reaction to chemicals in the body?(I suspect that the higher levels of hormones in the middle and the end of my cycle adversely affect my liver and my symptoms,also exposure to chemicals such as freshly painted spaces cause symptoms.I have read though that some ME sufferers felt better while pregnant so hormones are not an issue for everyone).Are there consistent patterns of exacerbation including timing when you exert yourself?

The timing of exacerbation seems to differ from person to person and it also seems to depend on the severity of illness. Nobody is saying that exposure to chemicals or menstrual cycle can't adversely affect symptoms. But not everyone with this illness reports sensitivities to chemicals or hormones whereas pretty much everyone reports being made sicker by exertion, whether physical or cognitive, which is why PEM is emphasised as a hallmark symptom and why people are trying to figure out what is wrong with the metabolism, the nervous system, the immune system etc. which may be causing these symptoms.

 

[Valentijn]

How long after the exertion is the exacerbation supposed to occur so that it would be clear that it is cause and effect and it is not necessary to look for other mechanisms or environmental factors or even reaction to chemicals in the body?

It can vary, but it should be a substantial delay to be PEM, which differentiates it from more immediate forms of exercise intolerance. Immediate exercise intolerance may also be present (possibly due to Orthostatic Intolerance), but they will be two fairly distinct sets of symptoms hitting at different times.

PEM typically hits about 24 hours after exertion, but some people have it start 2 days after exertion. It might happen a bit sooner than 24 hours, but I'd be pretty suspicious of calling something PEM if it starts within a few hours of exertion.

I have read though that some ME sufferers felt better while pregnant so hormones are not an issue for everyone).

Pregnancy has a strong effect on the immune system, to prevent the mother's body from viewing the fetus as a threat. It's not uncommon for people with autoimmune disease in general to experience a remission during pregnancy. So an autoimmune remission also seems to be a likely explanation for ME remission during pregnancy.

 

[cfs6691]

It can vary, but it should be a substantial delay to be PEM, which differentiates it from more immediate forms of exercise intolerance. Immediate exercise intolerance may also be present (possibly due to Orthostatic Intolerance), but they will be two fairly distinct sets of symptoms hitting at different times.

PEM typically hits about 24 hours after exertion, but some people have it start 2 days after exertion. It might happen a bit sooner than 24 hours, but I'd be pretty suspicious of calling something PEM if it starts within a few hours of exertion.


Pregnancy has a strong effect on the immune system, to prevent the mother's body from viewing the fetus as a threat. It's not uncommon for people with autoimmune disease in general to experience a remission during pregnancy. So an autoimmune remission also seems to be a likely explanation for ME remission during pregnancy.

Thank you and to the others who have posted for helping me to understand PEM.I still have one question the most exercise that I get is going out to pay bills and get groceries and whenever possible I will take a break and sit on a bench or use transport if I can sit while waiting(or on the bus).Sometimes it is not possible to go out at all,sometimes I might drink extra coffee or tea and wait (conserve energy while waiting )and hope that it takes effect.Does the severity of the symptoms vary according to how many minutes you walk and what would be the minimum?Is it proportionate to the minutes you walk?I read as much as I could of the studies that cheshire posted, depending on how the subjects were selected it seems that there is still a minority of ME/CFS albeit it a small one that does not present with PEM and being excluded from the definition and the research would mean having to start all over again.As far as pregnancy and hormones are concerned I liked your explanation and given that healthy women as far as I know have a harder time towards the end of pregnancy it might be an interesting clue for doctors and geneticists to bear in mind and do tests in order to study the autoimmune remission or figure out why some ME/CFS pregnant women feel better rather than worse(why aren't they affected in the same way as most healthy women).If some of the PRfemale participants would care to check for a few months and let me know if they experience worsening of their symptoms that might correlate with higher hormones or not(It's not the only factor or time of worsening of symptoms)I would love to hear from you.

 

[Flash of Hope]

I have noticed that some participants in a forum regarding their symptoms(if I have noted correctly Mij and OldBones in the forum The Big PEMPoll Question 3) have stated that their symptoms are worse in the morning which is also the case with me.I think that those who have introduced the term post-exertional malaise need to explain why malaise after rest should according to their theories be considered as post exertional malaise since in my opinion those two are polar opposites and some theories donot correspond to the symptoms that some of us experience and naming the condition after a term that doesnot correspond to the symptoms excludes de facto some of us from the definition and the research since the theories that are based on the assumption that fatigue occurs as a reaction to exercise(reaction that conveniently occurs the day after or even more than one day after exercise)do not explain our symptoms.

Naming isn't so important as long as its some what descriptive. PEM is unique feature of most of our condition so it's close. But labels are only important to insurance benefits or quickly passing generic information. I know we ME/CFS/SEID patients are touchy about the naming, mostly duo to past experiences with doctor and bureaucrats.

What comes to "morning sickness" (joke inside!) I have it too. Most of the time before current treatments when I woke up I wish I didn't. Body (muscles) are in strange pain and as soon as I get up sitting mind just melts away and brain is hurting. Then if wife talks to me or just crushes a paper bag, the noise makes me want to drill "relief" hole to my head. So now my wife knows no talking to me at morning and I use ear plugs...

But what comes to symptoms I have found help from VPAP variable positive airway pressure device, I have one with iVAPS function. And then I feed extra 5l/min oxygen to mask. With out these I don't want to sleep ever.

 

[Mij]

@cfs6691 I've had M.E for 25 years and I can tell that since starting menopause (last year) my energy production has decreased substantially. I had improved up to the point where I was able to power walk up to an hour a couple of times a week, but now I don't have the stamina for 20 minutes on a "good day". So lower estrogen levels does have an effect on ATP production.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4024050/

"Estrogen is a fundamental regulator of the metabolic system of the female brain and body. Within the brain, estrogen regulates glucose transport, aerobic glycolysis, and mitochondrial function to generate ATP. In the body, estrogen protects against adiposity, insulin resistance, and type II diabetes, and regulates energy intake and expenditure."

 

[cfs6691]

@cfs6691 I've had M.E for 25 years and I can tell that since starting menopause (last year) my energy production has decreased substantially. I had improved up to the point where I was able to power walk up to an hour a couple of times a week, but now I don't have the stamina for 20 minutes on a "good day". So lower estrogen levels does have an effect on ATP production.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4024050/

"Estrogen is a fundamental regulator of the metabolic system of the female brain and body. Within the brain, estrogen regulates glucose transport, aerobic glycolysis, and mitochondrial function to generate ATP. In the body, estrogen protects against adiposity, insulin resistance, and type II diabetes, and regulates energy intake and expenditure."

Pregnancy hormones and contraceptive steroids can cause cholestasis that is arrest of bile flow and liver damage.It goes to show how different bodies can be.I was looking forward to menopause(statistically it's not very far off )so that I would suffer less fatigue and irritation in my belly and hopefully avoid the worse of my symptoms.Have you had genetic testing?I would think that those who have polymorphisms regarding liver enzymes would be more likely to have issues with chemicals and that in general genetic testing provides clues regarding the different possible causes of ME/CFS eg the system of the body affected .Do mitochondrial issues show up on genetic testing or is it the immune system interacting with the body's ability to produce or expend energy?

 

[Snowdrop]

Has there been any discussion of what research other ME/CFS sufferers would like to see done

If you want to get a sense of what patients, advocacy groups and researchers are wanting from ME research you can have a look here: https://www.nih.gov/research-traini...ih-requested-comments-me/cfs-research-efforts

That will definitely bring you up to speed with what's being thought about.
Also, with regard to ME being more than one illness there is a thread that I think Jonathan Edwards started but I can't locate it at the moment.

 

[ScottTriGuy]

It can vary, but it should be a substantial delay to be PEM, which differentiates it from more immediate forms of exercise intolerance. Immediate exercise intolerance may also be present (possibly due to Orthostatic Intolerance), but they will be two fairly distinct sets of symptoms hitting at different times.

PEM typically hits about 24 hours after exertion, but some people have it start 2 days after exertion. It might happen a bit sooner than 24 hours, but I'd be pretty suspicious of calling something PEM if it starts within a few hours of exertion.

So the sickness symptoms I experience within 30 seconds if I walk up 2 flights of stairs is possibly from OI? Perhaps that also explains why even minimal use of my arms (lifting, carrying) brings near-immediate symptoms. (During my first 2 bouts with mild ME, I was still able to do weight workouts. Now my weight machine gathers dust.)

My experience has been that the longer I've been sick, the more immediate PEM symptoms from aerobic exertion - from a few days when I first got sick, to a few hours within a month, to the current near-immediate symptom onset.

 

[Groggy Doggy]

So the sickness symptoms I experience within 30 seconds if I walk up 2 flights of stairs is possibly from OI? Perhaps that also explains why even minimal use of my arms (lifting, carrying) brings near-immediate symptoms. (During my first 2 bouts with mild ME, I was still able to do weight workouts. Now my weight machine gathers dust.)

My experience has been that the longer I've been sick, the more immediate PEM symptoms from aerobic exertion - from a few days when I first got sick, to a few hours within a month, to the current near-immediate symptom onset.

I agree. Over time, my PEM has changed to a near-immediate onset.

 

[Comet]

Some symptoms I have are PEM, or delayed reaction to exertion. But some are immediate. As @ScottTriGuy said, I have immediate reactions to lifting my arms up to do things like wash my hair, brush my teeth, etc. I also get immediate reactions from bending or tilting my head at certain angles. Lots of things give me immediate reactions.

I tend to get PEM if I over do it either physically or cognitively. The more I do/overdo, the worse the PEM. I usually wake up the next morning feeling PEMed, but this can vary too.

 

[Valentijn]

whenever possible I will take a break and sit on a bench or use transport if I can sit while waiting(or on the bus).Sometimes it is not possible to go out at all,sometimes I might drink extra coffee or tea and wait (conserve energy while waiting )and hope that it takes effect.

This all sounds indicative of Orthostatic Intolerance. Standing up too long (or standing up at all) can result in lower blood pressure or pulse pressure in ME patients, and/or tachycardia. Sitting down can help quite a lot, as can drinking fluids. Though it's better to avoid fluids which might have any diuretic effect.

Does the severity of the symptoms vary according to how many minutes you walk and what would be the minimum?

For triggering PEM, there seems to be an approximate threshold of cumulative activity which will result in a crash if it's exceeded. There can be some variation in that threshold from day to day, and a huge degree of variation between different patients. But typically people have a pretty good idea if they are staying within their safe limits, or if they have definitely exceeded them. Heart rate monitoring might help with the gray areas between "definitely safe" and "definitely too much".

Is it proportionate to the minutes you walk?

The intensity of crashes seems to be pretty consistent for me. But if I very badly exceed my limits, such as with a maximal CardioPulmonary Exercise Test (CPET), a crash might last a couple weeks instead of a more typical day or two.

So the sickness symptoms I experience within 30 seconds if I walk up 2 flights of stairs is possibly from OI?

Yes, for some reason stairs seem to be a big problem with OI. There's probably an explanation for it somewhere, but I don't recall where

As @ScottTriGuy said, I have immediate reactions to lifting my arms up to do things like wash my hair, brush my teeth, etc. I also get immediate reactions from bending or tilting my head at certain angles.

These are all triggers for OI. Raising arms, standing still, and bending over are all known to be big problems, and I've also noticed my oxygen saturation drops if I strain my neck a bit to look behind me, triggering a rise in heart rate.

 

[Sea]

Another added explanation for why patients do better in pregnancy is that their blood volume is increased. ME/CFS patients are known to have low blood volume which is one of the contributers to OI