Is it possible to have ME/CFS without having any form of PEM?

[lansbergen]

The mild patient who can still work but gets destroyed by a bike ride could very well have the same underlying disease process as the very severe patient who gets PEM from rolling over in bed - there is no way to know at present given the absence of disease markers.

I agree

 

[Chieftain]

Very interesting that you bring up a bike ride.

I can actually exercise - walking, jogging, sprinting up hill, pushups, chinups, etc.

BUT riding a bike while sitting down at a moderate pace destroys me within 15 minutes of completing the ride - even if it's just 10 minutes. Causes fatigue, weak voice, lowered awareness of my surroundings, lowered mood, sometimes a dull headache.

And I don't get PEM anymore although I used to, for what it's worth. I'm sure this notion isn't novel: CFS being on a spectrum means that some people suffer more than others.

 

[Neunistiva]

BUT riding a bike while sitting down at a moderate pace destroys me within 15 minutes of completing the ride - even if it's just 10 minutes. Causes fatigue, weak voice, lowered awareness of my surroundings, lowered mood, sometimes a dull headache.

And I don't get PEM anymore although I used to, for what it's worth.

Aren't these two paragraphs contradictory?

 

[Chieftain]

Aren't these two paragraphs contradictory?

Good point - I should have clarified that what I meant was that I don't get NEXT DAY effects and certainly none of the soreness that often characterizes PEM. And since it's only from biking and no other vigorous exercise, there might be something else at work.

A quick google search for "migraine biking" will lead you to realize that there's something about biking that's a little "off" in how it affects blood circulation, although I'm not sure people understand it very well.

 

[Neunistiva]

@Chieftain That's still PEM, just milder.

I can't remember where, but I recently read two researchers that looked into PEM found different levels of severity because one tested exercise to exhaustion and other tested mild cycling for 20 (25?) minutes. For some reason for patents with ME/CFS bike ride was much more damaging.

 

[Chieftain]

@Neunistiva
Very interesting. What do you think it is about biking?

 

[Forbin]

I think, for a survey like this, it's important to first try to define PEM in some way.

In his webinar on Thursday, Dr. Komaroff described it this way:

One of the cardinal features of ME/CFS, that is pretty distinctive - you don't see it in other illnesses - is what's called Post Exertional Malaise, [i.e.] the fact that physical exertion, or sometimes cognitive exertion, can make a person have a flair up of their symptoms. Not immediately. Not while they're exercising, and not immediately thereafter, but typically the next day - 12 to 48 hours afterwards. We've know for years that that happens - now we're beginning to try to understand why. What's happening in the body that makes people feel worse after exercise?

See at about 16:50

This is consistent with my experience, although I think that my background level of "malaise" was so high and ever-present early in the illness that I did not start to notice PEM until about the third year, after things had eased up a bit. I wouldn't discover that PEM was a common feature of ME/CFS until a couple of decades after that.

In my experience, the "malaise" in PEM is like the malaise of an increased immune response. You might get muscle aches with that, but not necessarily specific to the muscles you used in the earlier exertion.

As I say, this is just one view of PEM. Others may disagree, but, if we're talking about different things, it will be hard to make sense of the results of the survey.

 

[Woolie]

This is consistent with my experience, although I think that my background level of "malaise" was so high and ever-present early in the illness that I did not start to notice PEM until about the third year, after things had eased up a bit. I wouldn't discover that PEM was a common feature of ME/CFS until a couple of decades after that.

Yes, that's my experience too.

In my experience, the "malaise" in PEM is like the malaise of an increased immune response. You might get muscle aches with that, but not necessarily specific to the muscles you used in the earlier exertion.

True for me too, @Forbin. It feels flu-ey to me. And as you say, not specific to the muscles you worked.

 

[halcyon]

I think Ramsay ME may simply be a much more severe/disabling - sometimes progressive - form of CFS whereby, as you say, the patient has a worsening of symptoms after trivial exertion but I do not agree that all ME patients have PEM after trivial exertion.

Except that Ramsay described the exact case you're talking about where symptoms aren't obvious during remissions of the disease, and the disease is characterized by fluctuations of relapse and remission. I look at it very much like MS, people don't not have MS when they happen to be between demyelinating episodes.

 

[rosie26]

For me, my ME with PEM started after the first flu over 20 years ago. PEM was mild and subtle in those earlier mild years. So I wasn't able to recognize what was happening. I was getting POTS symptoms also in those years. I continued to deteriorate each year after that. It wasn't until I reached full-blown severe ME where PEM was so severe that I then realized that I had been experiencing this to a lesser degree for many years beforehand.

I did start out with reactive arthritis at 20 years old. I think this was what disturbed my immune system firstly and then two flu's years later, caused my mild ME onset and then my severe ME onset. So I never had ME symptoms with the reactive arthritis but when the flu came, it was that which set off my ME symptoms.

Sorry, I haven't read everyone else's posts. I have to cut back on all my reading now.

 

[wonderoushope]

I pretty much suspected I had CFS about 3.5 years ago, but at the time I didn't notice a huge issue with PEM. I was fatigued but not from exercise (mainly because I hardly did any, never a big exercise person, apart from light walking).

Although I had remission periods after that 3.5 year mark, so I wanted to lose weight, so took on a personal trainer twice a week for 16 months. I was pretty good and didn't notice major issues with PEM, until the last 2 months of training and then the crashes came. In those 16 months I did have other CFS issues, but were managable. I would literally go home straight away after a session and need to sleep, and that continued on for about 3 days after exercise.

So I am bit like taniaaust1 symptoms progressed overtime and clear PEM set in much later on or it could be they were milder and I didn't notice it was PEM earlier on.

If I hadn't had done the personal training for 16 months and seen those clear crashes towards the end, it wouldn't have been so clear to me that I am on the "spectrum of CFS".

 

[lauluce]

based on my own experience, i believed that PEM is not required, as in my case, trought the first 8 or so years of my disease, I didn´t have PEM or it was so mild I didn't noticed. My disease progressed with time and it got remarcably worse after I started working at a company where I did more phisical effort than in the previous 8 years. When that happened, I started not only to have PEM but also POTS, the first confirmed by a 24 hs double excersice test with CO2 measurement and the second with a tilt table test. So I think that in mild forms of the disease, PEM could not be present or not be strong enough as to be noticed by the person. I think that once we have a biomarker, people with no PEM will be confirmed to have ME despite that fact

 

[Sidney]

http://info.sjogrens.org/conquering-sjogrens/bid/342548/13-Types-of-Sjogren-s-Fatigue



Sounds like PEM to me.

I have both: Sjögren's came first, and like the writer of the essay, fatigue was the only symptom I had, apart from test results, and it was exactly as she described . After a worsening couple of years of this, the PEM began ( I had never heard of it then), and I assumed it was Sjögren's getting worse, but I was finally diagnosed with CFS.

I know that one does not exclude the other. I don't know whether one leads to the other, or whether they are both part of some larger situation which has yet to be explained, or what.

But although overwhelming, unavoidable, and life-spoiling, the fatigue of Sjögren's was not the same as PEM: PEM is Malaise, not fatigue, no matter how crippling that can be. It is an unmoveable feeling of disorder, permeating every cell of every system.

So yes, from this limited perspective, I would say that it is a defining characteristic of ME/CFS.

 

[Woolie]

I know that one does not exclude the other. I don't know whether one leads to the other, or whether they are both part of some larger situation which has yet to be explained, or what.

My bet would be on that last one, @Sidney! There is probably some underlying immune problem that manifests itself differently in different people. When it manifests as fatigue/PEM, that can't be objectively measured, so that component earns the label MECFS. The other bits - like the dryness in Sjogrens - are measurable and so they earn their own special label.

Plus, so many people have Sjogren's and CFS together, I don't think its just a coincidence.

 

[Basilico]

I am also fairly certain it is NOT an M.E specific thing - in my quest to find out what is worng with me I have hung around on:
MS boards,
Lupus boards,
Thyroid boards,
Lyme boards
MCAS boards

They all discuss something VERY similar. But whether the subjective experience of crashing or relapsing after too much activity, either immediately or delayed is the same in M.E as it is in these other illnesses or different as perhaps shown on exercise testing I do not know. Do we know if people with these other dx have ever done the same two day exercise tests?

I can maybe address this. I am diagnosed with MS. I've had MRIs, a spinal tap, and bloodwork that all showed without a shadow of a doubt that I fit the criteria for MS. My first symptom was optic neuritis, a textbook first MS symptom. However, my MS seems to be atypical as my symptoms are much more closely aligned with CFS than with common MS symptoms. Additionally, in comparing my most recent MRI to the one taken 7 years ago, there has been no increase in brain lesions and I have not been on medication during that time (so lack of increased lesions is very unusual). My main issues are: extreme crushing exhaustion, impaired memory and concentration, POTS, unrefreshing sleep (often feeling more tired when I wake up than when I went to sleep). My neurological symptoms are minor and I have no difficulty walking. As an aside, I also had chronically swollen glands and a history of several major viral and bacterial infections.

I also occasionally get PEM, though I don't get it often, and it has never lasted more than 1 day. Once, it happened after walking 10 minutes (I had a feeling that something wasn't right, ignored it and walked anyway, then crashed and was immobile for several hours.) A few other times I got PEM after doing non-strenuous exercise that I had been doing regularly with no previous problems (for me, PEM usually lasts anywhere from an hour to a few hours and often feels like I've been hit by a bus, involving the muscles in my whole body, not just the ones being used - so for example, after doing lunges I would get 'dead arms' and not be able to hold a glass of water).

I also have low blood pressure and have issues with POTS that seems to come and go - when my BP is around 90/55, I am often dizzy, lightheaded, have trouble standing and bending down. Then I have periods of time where this issue mysteriously disappears, and my BP tends to be in the more low/normal range (100/60).

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You could potentially meet Canadian Consensus Criteria - A patient with ME/CFS will meet the criteria for fatigue, post-exertional malaise and/or fatigue,sleep dysfunction, and pain.

You could potentially meet The CDC (Fukuda 1994) Definition for Chronic Fatigue Syndrome -

The concurrent occurrence of four or more of the following symptoms:
substantial impairment in short-term memory or concentration;
sore throat;
tender lymph nodes;
muscle pain;
multi-joint pain without swelling or redness;
headaches of a new type, pattern, or severity;
unrefreshing sleep; and
post-exertional malaise lasting more than 24 hours.

And again, to further complicate things, I fit both criteria for CFS even though I have MS.

I think the difference though is that people with ME/CFS don't just crash for a couple of hours or a day or two. For some of us it can last for a week to weeks at a time. I definitely think that in order to have a diagnosis of ME/CFS you have to have PEM.

My husband has what I consider 'true CFS' and he gets extremely bad PEM that usually lasts for several hours/the rest of the day. His PEM crashes don't typically last for longer, though he does have weeks or months of feeling especially crappy.

 

[Sidney]

My bet would be on that last one, @Sidney! There is probably some underlying immune problem that manifests itself differently in different people. When it manifests as fatigue/PEM, that can't be objectively measured, so that component earns the label MECFS. The other bits - like the dryness in Sjogrens - are measurable and so they earn their own special label.

Plus, so many people have Sjogren's and CFS together, I don't think its just a coincidence.

Good point: PEM cannot be objectively measured. Think what a difference it would make if it could be!

 

[Valentijn]

Good point: PEM cannot be objectively measured. Think what a difference it would make if it could be!

Well, it can be, with a two-day CPET. But it's a very unpleasant experience, so it usually isn't measured

 

[*GG*]

Well, it can be, with a two-day CPET. But it's a very unpleasant experience, so it usually isn't measured

That is being discussed here, and there are other Threads on this as well http://forums.phoenixrising.me/index.php?threads/vo2max-exercise-test.18431/

GG