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The term "Post Exertion Malaise" is also insulting.

jspotila

Senior Member
Messages
1,099
We describe our post exertional crashes in a lot of creative ways...

Muscle wilting meltdown, air gulping short of oxygen feeling, brain blood vessels flayed on a laundry line in the wind, metal rods in the back of head (my personal punishment if I push through brain fog), someone crushing your ribcage, limbs giving out, mesh bag constricting head, 'pingers': those first small headaches that that warn of bigger headaches, 'back of head clamp' which is my specific exercising through OI headache, increased gravity feeling, being pushed backward into bed, temple-to-temple headache, weak arms as if bound down by stretchy ropes, eyes and brain blanking with a kind of pulse through the head... at any rate, I agree that our sensations are far too severe, varied and specific to be categorized as 'malaise'. I like post exertional collapse, it is very accurate. Harm and damage often come from these collapses, though on the outside they may look like 'malaise'.

I love these descriptions. I add my own - feeling like I am a shaken up can of soda, with scattershot tingles and pain over every inch of my body. Not a very good acronym though.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Post Exertional Morbidity

post exertional morbidity

LOL ... ok, maybe Zombie wasn't the right word. I'm definitely still alive just mentally and physically unavailable ... you could poke me with a stick and all you'd get would be a groan !! lol

I hope Gerwyn wasn't joking, because Post Exertional Morbidity is what I use (I think i coined it) and I don't intend it to be a joke. Morbidity doesn't mean mortality (death); it's a medical term whose primary meaning is disease or illness.

I've found a couple of related of medical words, but the average person is not going to know what they mean. They sound more serious, though.

1) Hyposthenia : n. An abnormal lack of strength; weakness.

2) Adynamia: Adynamia means lack of strength or vigor due to a pathological condition. It is often associated with a range of neurological diseases such as multiple sclerosis and medial-frontal lobe lesions.

Post Exertional Hyposthenia (PEH) ?
Post Exertional Adynamia (PEA) ?

PEH is alright; my only thing is it sounds like neurasthenia with which we don't want an association.

I don't like adynamia so much since, if i didn't know what it meant i would think it means 'not dynamic' as in the patient's personality isn't dynamic so he doesn't get much done.


What about Post Exertion Symptom Exacerbation? That would make it PESE (maybe a little better than PEE).

I don't like this because it specifies symptom which has a bad rap in medicine because to a doctor a symptom is something the patient reports that the doctor can't verify and a sign is something the doctor can see, measure or verify himself. Using symptom also could be used to imply that only the symptoms, but not the underlying disease worsens.

We definitely don't want PEE! What about PER - post-exertional relapse?

I'm not sure about "relapse."

I'm not sure if we could call what we have before PEM sets in as "improvement." It's our baseline crappy, and then it gets worse!

I thought of Exertion Induced Exacerbation. That would be EIE. Makes me think of E I E I O . . . With a quack, quack here . . .

Gracenote,

I agree with both points. I like Exertion Induced Exacerbation; I would suggest a variant Exertion Induced Disease Exacerbation or EIDE. (I also like Post Exertional Disease Exacerbation but PEDE sounds like peed).

Post Exertional Exacerbation is really good, but i don't like PEE. :Retro smile:

Overall, I like Post Exertional Morbidity because it fits in PEM, it sounds medical to both lay people and doctors and it rolls off the tongue more easily than some others.

Exertion Induced Morbidity could be good, but doesn't fit into PEM.

I also think Post Exertional Crash is good, though it's not medical sounding.

I think it was Stuart on another thread who made the excellent point that these crashes are not caused only by exertion, but by any stress, challenge or insult, eg. an infection, physical or mental effort, physical injury, strong emotional stress, chemical exposure etc.

He suggested Post Event Morbidity, but I don't think 'event' or any other fitting word (stress, stressor, insult, challenge) i can think of would be good since they all could be co-opted by psychiatrists to imply psychological involvement. Anyone have any ideas on this?
 

Tammie

Senior Member
Messages
793
Location
Woodridge, IL
I like "amplification" because activity/exertion/whatever really does amplify all the symptoms, but I agree that the word symptom itself could be a problem

activity induced disease amplification, post activity illness amplification?

I also like "collapse" - it describes what happens pretty well; however, I don't like it quite as much bc it seems to imply just the exhaustion, weakness, etc gets worse, and in reality it is all the symptoms that are increased

personally, I think "annihilation" also fits, but I don't see anyone believing that it is that bad, and it's not exactly medical sounding either
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
I like "amplification" because activity/exertion/whatever really does amplify all the symptoms, but I agree that the word symptom itself could be a problem

activity induced disease amplification, post activity illness amplification?

I also like "collapse" - it describes what happens pretty well; however, I don't like it quite as much bc it seems to imply just the exhaustion, weakness, etc gets worse, and in reality it is all the symptoms that are increased

personally, I think "annihilation" also fits, but I don't see anyone believing that it is that bad, and it's not exactly medical sounding either

i don't think 'illness' is as good as disease since the psychs want to call ME an illness because illness is what the patient says he has and disease is what a doctor diagnoses you with, with again their assumption or implication that doctors are more objective and correct than patients.

The psychs claim we internally 'amplify' our symptoms- which doesn't make sense, but this is another way they try to imply that we're exaggerating or that it's all in our heads. Thus I'm not as big a fan of 'amplification'.
 
Messages
23
How about something simple so both lay and professional people know that we do not react to exercise in a normal way, and it makes us sick? Maybe something like:

post exertional disorder

post exertional anomaly

post exertional abnormality
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
What about exertion induced exacerbation? Or activity induced exacerbation?

Also, I'm warming up more to jspotila's "post-activity exacerbation." It's easier to say than most, and actually comes very close to post exertion exacerbation.

The word "morbidity" means "illness" and it doesn't carry the idea that the illness got worse.

OTOH, we could use post exertion exacerbation and not worry that it's PEE. But right now I'm favoring "post activity exacerbation."
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
I copied this into my original post where I referred to Dr. Myhill's explanation too ...

For me, the area that I put in bold print is what I think PEM is and explains why it takes a few days to recover. I don't get any other symptoms than this when I'm suffering from PEM ... KOW ...

IMHO, we should try to keep this symptom seperate from all the others. And while I'm at it ... :rolleyes: I'd like to see anyone diagnosed with ME/CFS tested for this either via Dr. Myhill's test or the Pacific Lab test. Except that the Pacific Lab testing needs to be done for more than just the first day after exertion. Sometimes I can go for a few days before crashing ...

http://drmyhill.co.uk/wiki/CFS_-_The...ndrial_Failure

Chronic fatigue syndrome is the symptom caused by mitochondrial failure

The job of mitochondria is to supply energy in the form of ATP (adenosine triphosphate). This is the universal currency of energy. It can be used for all sorts of biochemical jobs from muscle contraction to hormone production. When mitochondria fail, this results in poor supply of ATP, so cells go slow because they do not have the energy supply to function at a normal speed. This means that all bodily functions go slow.

Every cell in the body can be affected
The following explains what happens inside each cell:

ATP (3 phosphates) is converted to ADP (2 phosphates) with the release of energy for work. ADP passes into the mitochondria where ATP is remade by oxidative phosphorylation (ie a phosphate group is stuck on). ATP recycles approximately every 10 seconds in a normal person - if this goes slow, then the cell goes slow and so the person goes slow and clinically has poor stamina ie CFS.

Problems arise when the system is stressed. If the CFS sufferer asks for energy faster than he can supply it, (and actually most CFS sufferers are doing this most of the time!) ATP is converted to ADP faster than it can be recycled. This means there is a build up of ADP. Some ADP is inevitably shunted into adenosine monophosphate (AMP -1 phosphate). But this creates a real problem, indeed a metabolic disaster, because AMP, largely speaking, cannot be recycled and is lost in urine.

Indeed this is the biological basis of poor stamina. One can only go at the rate at which mitochondria can produce ATP. If mitochondria go slow, stamina is poor.

If ATP levels drop as a result of leakage of AMP, the body then has to make brand new ATP. ATP can be made very quickly from a sugar D-ribose, but D-ribose is only slowly made from glucose (via the pentose phosphate shunt for those clever biochemists out there!). This takes anything from one to four days. So this is the biological basis for delayed fatigue.

However there is another problem. If the body is very short of ATP, it can make a very small amount of ATP directly from glucose by converting it into lactic acid. This is exactly what many CFS sufferers do and indeed we know that CFS sufferers readily switch into anaerobic metabolism.

However this results in two serious problems - lactic acid quickly builds up especially in muscles to cause pain, heaviness, aching and soreness ("lactic acid burn"), secondly no glucose is available in order to make D-ribose! So new ATP cannot be easily made when you are really run down. Recovery takes days!

When mitochondria function well, as the person rests following exertion, lactic acid is quickly converted back to glucose (via-pyruvate) and the lactic burn disappears. But this is an energy requiring process! Glucose to lactic acid produces two molecules of ATP for the body to use, but the reverse process requires six molecules of ATP.

If there is no ATP available, and this is of course what happens as mitochondria fail, then the lactic acid may persist for many minutes, or indeed hours causing great pain. (for the biochemists, this reverse process takes place in the liver and is called the Cori cycle).

Treatment package for failing mitochondria

The biological basis of treatment is therefore explained:


Pace - do not use up energy faster than your mitos can supply it.

Feed the mitochondria - supply the raw material necessary for the mitochondria to heal themselves and work efficiently. This means feeding the mitos correctly so they can heal and repair.

Address the underlying causes as to why mitochondria have been damaged. This must also be put in place to prevent ongoing damage to mitos. In order of importance this involves:

Pacing activities to avoid undue stress to mitos

Getting excellent sleep so mitos can repair

Excellent nutrition with respect to:

taking a good range of micronutrient supplements

stabilising blood sugar levels

identifying allergies to foods

Detoxifying to unload heavy metals, pesticides, drugs, social poisons (alcohol,tobacco etc) and volatile organic compounds, all of which which poison mitos.

Addressing the common problem of hyperventilation

Address the secondary damage caused by mitochondrial failure such as immune disturbances resulting in allergies and autoimmunity, poor digestive function, hormone gland failure, slow liver detoxification.

And now for a bit of good news! AMP can be recycled, but slowly. Interestingly, the enzyme which does this (cyclic AMP) is activated by caffeine! So the perfect pick-me-up for CFS sufferers could be a real black organic coffee with a teaspoon of D-ribose!

A Vital Test in Chronic Fatigue Syndrome

The central problem of chronic fatigue syndrome is mitochondrial failure resulting in poor production of ATP. ATP is the currency of energy in the body and if the production of this is impaired then all cellular processes will go slow. It is not good enough to measure absolute levels of ATP in cells since this will simply reflect how well rested the sufferer is.

The perfect test is to measure the rate at which ATP is recycled in cells and this test has now been developed by John McLaren Howard. He calls it "ATP profiles". It is a test of mitochondrial function.

Not only does this test measure the rate at which ATP is made, it also looks at where the problem lies. Production of ATP is highly dependent on magnesium status and the first part of the test studies this aspect.

The second aspect of the test measures the efficiency with which ATP is made from ADP. If this is abnormal then this could be as a result of magnesium deficiency, of low levels of Co-enzyme Q10, low levels of vitamin B3 (NAD) or of acetyl L-carnitine.

The third possibility is that the protein which transports ATP and ADP across mitochondrial membrane is impaired and this is also measured.

The joy of the ATP profiles test is that we now have an objective test of chronic fatigue syndrome which clearly shows this illness has a physical basis. This test clearly shows that cognitive behaviour therapy, graded exercise and anti-depressants are irrelevant in addressing the root cause of this illness.

To get the full picture I recommend combining this test with measuring levels of Co-enzyme Q10, SODase, Glutathione Peroxidase, L-carnitine, NAD and cell-free DNA. Cell free DNA is very useful because it reflects severity of the illness. When cells are damaged and die, they release their contents into the blood stream - cell free DNA measures the extent of this damage.

The levels which come back are similar to those from patients recovering from major infections, trauma, surgery or chemotherapy - so this test puts CFS firmly in the realms of major organic pathology. SODase is an important antioxidant which mops up the free radicals produced in all the inefficient chemical reactions in the cells. Dr John McLaren-Howard has recently developed a serum L-carnitine test and made it available in September 2009. I have now included it in the Mitochondrial Function Profile.



In fact, all seven tests have now been combined as a "Mitochondrial Function Profile" and can be ordered from my practice. To order the test, please use the online order form at the bottom of the test page (see link below). I also need your completed Medical Questionnaire.

For payment methods, please see [Ordering tests]. You can also post a note requesting the test with a paper copy of the questionnaire and your payment (a cheque for 295, i.e. 225 for the tests and 70 for my letter to your GP, made payable to Sarah Myhill Limited) to my office at Upper Weston, Llangunllo, Knighton, Powys LD7 1SL. On receipt of your questionnaire and payment a test kit will be sent to you.

The price for my letter reflects the fact that in that 10 - 14 page letter I interpret 7 separate tests as well as giving advice about all the various health problems reported in your questionnaire.


One other important co-factor in the production of energy in cells is D-ribose. It is used up so quickly by cells that measuring levels is unhelpful, but low levels of ATP imply low levels of D-ribose.

PS. Thank you Dr. Myhill ...
 

JT1024

Senior Member
Messages
582
Location
Massachusetts
Great thoughts on renaming PEM..... Also, great post xchocoholic!

There is so much information out there, it makes me angry that doctors still ignore EVIDENCE.
 

Dr. Yes

Shame on You
Messages
868
Another one for the thesaurus: Post- Exertional (or whatever) Intensification.

But to improve doctor-patient understanding, I suggest we call it "What", because that's what doctors say when we give them any of these ME/CFS terms.

"Doctor, I have 'What'"

"What?"

Exactly.

(By the way, 'ME/CFS' comes under the "What" umbrella, too.)
 

shiso

Senior Member
Messages
159
Just came across this thread, and I think "MWTMUS" and "What?" get the most points for descriptive accuracy and reality, respectively. :rolleyes:

Seriously though, "malaise" bothers me too. All healthy people get it, just like they get "fatigue" and the blues. Healthy people with "malaise" and "fatigue" benefit from exercise, while the core problem of the disease is that function worsens with increased activity.

Why do we need to be tied down to a catchy acronym, in the first place? How about just "decrease in physical and/or cognitive function upon exertion" or "exacerbation of physical and/or cognitive symptoms upon exertion"?
 

fds66

Senior Member
Messages
231
Perhaps turning it round might give some better acronyms

Abnormal response to exertion
Delayed recovery from exertion
Symptom exacerbation due to exertion
Exacerbation due to Exertion
Exertion induced Exacerbation
Exertion induced Symptom Exacerbation

(not sure if they work because recovery implies that we actually recover from exertion ? I certainly never feel well so anything that implies I'm OK til I exercise is no good)


If you stick with the Post Exertional then you could use worsening but it's a bit vague - PEW
(reminds me of a children's program here with firemen called Pew Pew Barney Mcgrew lol)

Personally I just think of it as Consequences (or Dire Consequences if it's really bad)
or Overdraught at the Energy Bank
or Perhaps I Shouldn't Have Done That
 

girlinthesnow

Senior Member
Messages
273
Post Exertion Malaise is clearly a bad description of what happens

Abrnormal Response to Exertion is neutral and clear. (ARE)

Exertion induced Symptom Exacerbation says what happens, ie. the abnormal bit. (ESE)

I like ESE
 
K

Knackered

Guest
Post Exertion Malaise is clearly a bad description of what happens

Abrnormal Response to Exertion is neutral and clear. (ARE)

Exertion induced Symptom Exacerbation says what happens, ie. the abnormal bit. (ESE)

I like ESE

I think you've hit the nail on the head with that one, I like it too.
 

Carrigon

Senior Member
Messages
808
Location
PA, USA
I had a fight with my last doctor about the whole "waste basket" thing. I just wanted to punch him. He kept insisting that CFIDS is nothing more than a "waste basket disease". I've just had it with that term. Maybe we should all wear a tee shirt with a trash can on it? UGH. And the word malaise is so inadequate. I overdid it this weekend and I am beyond malaise. I'm post exertionally dead. I'm really having trouble moving around at all, as in, can't get off the bed or couch. People just don't understand, when the energy is gone from the cells, you can't get it back. And you're lucky when you do get alittle of it back after alot of rest. Something is just draining us dry. But it's the ultimate invisible demon, no one can see it happening.
 

Angela Kennedy

Senior Member
Messages
1,026
Location
Essex, UK
Post Exertion Malaise is clearly a bad description of what happens

Abrnormal Response to Exertion is neutral and clear. (ARE)

Exertion induced Symptom Exacerbation says what happens, ie. the abnormal bit. (ESE)

I like ESE

Abnormal response to exertion so far seems good. 'Symptoms' - bearing in mind the way certain docs often use this term to denote subjective 'feelings' rather than physiological processes, can be used to trivialise this condition.
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
I happened to see my ENT doctor today. I see him for cancer follow-up, not CFS. I told him I was interested in his feedback on medical terms. I asked him what the medical term is for an illness getting worse, other than the word "exacerbation." He says "exacerbation" or "exacerbated" is what he uses, and he doesn't know of another. I also asked him what it means to him about the word "symptom" in this context. I asked if using the word "symptom" could imply that the condition has not really gotten worse, and that only the symptoms are worse. He said that that if someone says the symptoms are worse he doesn't take it any way other than the illness getting worse. IOW, according to one doctor I asked, it would be okay for us to use the word "symptom."

But because there has been some question about how doctors might take the word "symptom," why not ask the next doctor you talk.
 

Gemini

Senior Member
Messages
1,176
Location
East Coast USA
Andrew,

Great topic. My choice:


Exertion Intolerance EI (or Physical Exertion Intolerance-- PEI)

exacerbated by normal and above levels of physical and/or cognitive activity; significantly worsened following prolonged and/or strenuous activity; acquired (did not exist pre-illness); may be related to decreased metabolic energy production and imbalance between oxygen supply and demand; evidenced by overwhelming lack of energy, inability to maintain usual routines, decreased performance, impaired ability to concentrate, pain, and possible abnormal heart rate and dyspnea with activity.


Adapted from Activity Intolerance, Tabors Cyclopedic Medical Dictionary, 16th Ed. used in the diagnosis of diseases such as viral hepatitis, myocarditis, rheumatic fever, TB, anemia, and others. Each disease customizes the description to match its symptoms.

Formal definition of Activity Intolerance is a state in which an individual has insufficient physiological or psychological energy to endure or complete required or desired daily activities.

I changed it to Exertion Intolerance to keep the focus on the physical and customized it to ME/CFS symptoms.

Gemini
 
Messages
23
I really like the word disorder. It makes it clear to everyone, doctor, patient, and public that something is wrong. It can't get turned around and used against us. With that in mind, how about:

Discrepant exertion amplification disorder, or DEAD :D

*Meaning dead tired, dead to the world...