Relapse vs Post-Exertional Malaise?

[Persimmon]

Is a relapse a different type of bodily reaction to post-exertional malaise, or just a more severe/prolonged PEM experience?

I'm unsure where the term 'post-exertional malaise' originated.
The CCC describes PEM as usually lasting 24 hours or longer. The word 'relapse' doesn't appear anywhere in the CCC clinical case definition.
The ICC uses the term Post-Exertional Neuroimmune Exhaustion (or PENE) instead of PEM. It describes PENE as usually lasting 24 hours or longer, but defines PENE broadly so as to include relapses.

Consider 3 examples:
Yesterday I had to sit down for an hour or so after a relatively small exertion;
Last week I was knocked around for a couple of days after a larger exertion; and
In 2010 I had a relapse that lasted well over 6 months.
Are these supposed to be separate physiological reactions in some way; or are the 3 simply points along a single spectrum of post-exertional reactions?

 

[alex3619]

Hi Persimmon, I think they are different, though I think that repeated PEM can cause relapse. Relapse is not a good word though. This condition can improve, particularly if the patient learns to pace and has good medical care. The condition can also worsen. A worsening can be called a relapse, meaning that we were stable or improving then got worse. Such worsening does not have to have anything to do with PEM though. PEM is not the only thing involved - there are so many body systems involved that I would be surprised if there were not many reasons for the condition worsening. Bye, Alex

 

[heapsreal]

PEM i think is something you recovery from within a few days i guess and u know the cause ie doing too much. Where a relapse/crash is a drop in function sometimes for an unknown reason or another infection or maybe multiple PEMS and the drop in function lasts months. I think PEM is a mini crash and a relapse is a crash which takes much longer to recover from, if one does.

cheers!!!

 

[BEG]

PEM happens 24-48 hours after you have overdone and gone out of the energy envelop in a bad way. It's a crushing, unmistakable worsening of all symptoms. Most often you need to go to bed for some really decent rest and recovery.

Like heapsreal says, a relapse can be spontaneous and you may never know the reason. It lasts far longer than PEM and may take years for an ME/CFS person to recover.

 

[Mij]

Everyone has pretty much explained the difference. From my own experience since I have/had had both which are distinctively different is that a relapse which I had 12 yrs ago from taking immune modulators provoked a reactivation(?) of a virus or immune response which caused me to become permanantly worse and brought on different symptoms which I never had before. I was very ill for 3 months and recovered some what since then but never regained my previous gains.

I experience PEM(PENE) when I overexert myself with aerobic type exercise and depending on how much I've overdone(which I am very aware and careful of now) it can take days or a week to get back to my previous baseline.

 

[taniaaust1]

PEM happens 24-48 hours after you have overdone and gone out of the energy envelop in a bad way. It's a crushing, unmistakable worsening of all symptoms. Most often you need to go to bed for some really decent rest and recovery.

I think its not talked about much but I find that PEM can also hit sooner then 24 hrs. at times it hits me 16-18 hrs post excertionally.
.....

I personally think something a little different happens in our body when PEM/PENE happens and when an actual relapse happens. When an actual relaspse happens which could be caused by going into PEM/PENE too often.. I can get many new symptoms on top of the usual PEM/PENE ones. Some kind of dramatic shift has happened in my body... to the point a completely new symptom complex can be there.

I love to see ME/CFS people studied long term to find out what actually about their bodies shift .. what changes when they get PEM but not only what.. what has changed in the indivduals when they have gone into a relapse. Something must of.

Maybe having research into that area of studying ME individuals would give us some answers. I'd love to see some complex individual ME study to try to get to the bottom of it. What did change in the person? Work out that in one person and it may give the answer for so many more.

I think when they are studying a group with another group it can water down some of the individual findings due to all the different ways this illness can manifest eg most with ME have low BP.. put me into a BP study s with low BP ones (which did happened) when I have disregulated and high BP due to dysregulation.. screws then up the groups BP average esp if the study group is small like most ME/CFS studies are

What about cortisol.. ME/CFS people often have low cortisol but some have high cortisol (I think esp in the early stages of the illness).. average out a group results and it will help make the whole group seem more normal which it may not be.. It would be more interesting to see what "other similiarites" a high cortisol ME/CFCS group has with one another... and same for those who have low cortisol and ME ... maybe they'd find distinct subgroups or different illnesses coming out if they started looking at things in a different way.

Its just like if fatigue is being studied in ME/CFS.. it should include just those in one group who have a certain type of fatigue and not be mixing post exertional fatigue peoples in the same group with ones who dont have that but just have general fatigue. To start mixing the different types.. is to possibly be mixing some very different things together.

 

[Calathea]

A lot of this is about language rather than symptoms: what doctors call things, what researchers call things, what we call things.

I'm aware of PEM as a phenomenon, but I never seem to use the term in everyday use, as it's quite formal and also the sort of jargon which doctors hate to hear (and are unlikely to understand, unless you have a sympathetic ME specialist). PEM seems to be more of a term for researchers, and also one which is used between people with ME on forums such as this one. PENE has the singular disadvantage of meaning "penis" in Spanish.

I used to say "relapse" but then realised that it was implying that I had previously improved or stabilised. I now use "crash" for short- to medium-term problems (anything from a few days' PEM to a rough few weeks or months), and "deterioration" for medium- to long-term problems. I'm still not quite sure about using "crash" with doctors, maybe it's not the best term, but I haven't found a better one yet.