The term "Post Exertion Malaise" is also insulting.

Andrew

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We all understand how the term "fatigue" is not the sum total of what this illness is about, and how this hurts us. The word "malaise" is almost as harmful. This is from the first three online medical dictionaries I checked:

Malaise: A vague feeling of discomfort, one that cannot be pinned down but is often sensed as "just not right."
A vague feeling of bodily discomfort. This entry appears with permission from the Dictionary of Cell and Molecular Biology (11 Mar 2008)
A feeling of general discomfort or uneasiness, an out-of-sorts feeling, often the first indication of an infection or other disease.
If I felt this well after exertion, I'd be jumping for joy. Because the fact is, it is rare for me to even feel this well before exertion. Who are they trying to kid.
 

Sunday

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Good point, Andrew. I was happy to find the term PEM because at last someone was describing what I felt - but you're right, if you look closer, "malaise" is a dumb word to refer to us.

Yes, I agree: I'm happy when I feel as GOOD as malaise implies. What would be a better word? Stupor? Shattering? We need more word people in here. My own informal description is, "feel like a slug on barbituates".
 

Advocate

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The word "malaise" is more insulting than the word "fatigue."

We all understand how the term "fatigue" is not the sum total of what this illness is about, and how this hurts us. The word "malaise" is almost as harmful..
I'm glad you started this thread. The only place where I disagree with you is that I think the word "malaise" is more harmful than the word "fatigue." There are ways of measuring fatigue. How can one measure vague feelings? I detest the word "malaise." :eek:

Malaise is what you have if you are a character in a Tennessee Williams play, and it's over 100 degrees in the shade, and you are sitting on the veranda wearing a white dress or a white suit, drinking mint julep. ;)

Malaise sounds like lazy. Malaise sounds like you could get up and get on with your life if you really wanted to. It amazes me when PEM rolls off the tongue as easily as PMS.

Am I alone in finding the word insulting when it's used to describe someone with CFS?

Advocate
 

Kati

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Again it feels to me like branding CFS as being benign.

Since we have little control on what comes out from these doctor's mouth, we can control what we say.

Calling our disease ME/CFS or purely ME is up to us.
Calling post exertional relapse instead of PEM is also our choice.

We need to stop insulting ourselves. That's really where we're at.

Thank you for bringing this up Andrew.
 
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Malaise is what you have if you are a character in a Tennessee Williams play, and it's over 100 degrees in the shade, and you are sitting on the veranda wearing a white dress or a white suit, drinking mint julep. ;)


But advocate, that is exactly what happens to me. I overdo it just a bit, and suddenly I am overcome with the vapors and feel like I might swoon. ;)
 

Mithriel

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I have posted about this before. I hate the term post exertional malaise. WE may know what we mean by it but anyone who has dug up the garden at the weekend will believe they have post exertional malaise. I have noticed that the psyches are again taking one of our terms (like pacing) and are giving it their own trivial spin. They are equating it to overexercising when you are deconditioned so the fact we feel it is proof of their theories.

Malcolm Hooper writes that
the defining feature of ME/CFS being post‐exertional muscle fatigability with malaise
Malaise was the feeling like you had the flu but it seems to have changed. Those medical dictionary definitions really devalue it.

The problem I have is that I can't think of a good way to describe what we have. Any ideas?

Mithriel
 

Esther12

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If I felt this well after exertion, I'd be jumping for joy.
How dare you so trivialise the suffering of those whose lives have been ruined by post-exertional malaise. I can assure you it is no minor matter, and certainly not something which anyone would 'jump for joy' over.

I am ever so insulted!



You could well be right that PEM isn't a terribly good term, and creates a misleading impression. Better to emphasise it's inaccuracy though, rather than the fact you find it insulting. People can find all sorts insulting - it's usually best to just leave them to it imo. I don't think those who use the term PEM mean to be insulting and I think it's best to give people a bit of leeway before allowing yourself to feel insulted by their use of language - our words are imperfect tools and we shouldn't expect too much from them.
 

xchocoholic

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Thanks Andrew,

I've happily been using the term PEM because I finally had a word for how I felt for a few days after being active but ... you make a GREAT point here. Malaise doesn't begin to describe the fact that I'm sacked out on the sofa like a limp zombie for 2 - 3 days ... We definitely need a new name for this. I was thinking that tying it to the excercise intolerance studies done by Pacific Labs might help ... so something along the lines of what they say happens to us when we exert ourselves. It's a Kreb's cycle detox malfunction ... I can't remember the exact chemical names ...

I'm at a loss in coming up with a better term here but maybe someone else can elaborate further ... xchoc
 
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Gerwyn

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Thanks Andrew,

I've happily been using the term PEM because I finally had a word for how I felt for a few days after being active but ... you make a GREAT point here. Malaise doesn't begin to describe the fact that I'm sacked out on the sofa like a limp zombie for 2 - 3 days ... We definitely need a new name for this. I was thinking that tying it to the excercise intolerance studies done by Pacific Labs might help ... so something along the lines of what they say happens to us when we exert ourselves. It's a Kreb's cycle detox malfunction ... I can't remember the exact chemical names ...

I'm at a loss in coming up with a better term here but maybe someone else can elaborate further ... xchoc
post exertional morbidity
 

Mithriel

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How dare you so trivialise the suffering of those whose lives have been ruined by post-exertional malaise. I can assure you it is no minor matter, and certainly not something which anyone would 'jump for joy' over.

I am ever so insulted!
Esther you have interpreted the post wrong.

Andrew is referring to the fact that the definition of malaise is
Malaise: A vague feeling of discomfort, one that cannot be pinned down but is often sensed as "just not right."

He means that if he had a vague feeling of discomfort he would be jumping for joy.

Unfortunately, like the rest of us, he feels like death.

If others are "hearing" malaise as vague discomfort we need to find a new description. We know what we experience, so we have to find a good way of conveying it to others.

Andrew was not intending any insult to people who use the term post exertional malaise. It is all we have just now but we would do well to look for something better.

Mithriel
 
We definitely need a new name for this. I was thinking that tying it to the excercise intolerance studies done by Pacific Labs might help ... so something along the lines of what they say happens to us when we exert ourselves. It's a Kreb's cycle detox malfunction
PEM = Post Exertional Malfunction....also known as being thrown off the Empire State Building and then being trampled by a herd of elephants.:D
 

Forbin

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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) ?
 

xchocoholic

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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

hmmm, I think Dr. Myhill has something on this too. Does she call it PEM ?

Edited to add this info from Dr. Myhill ... 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 ... KOW ...

http://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_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.
 

Andrew

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I might have found something. Instead of malaise, it could be "exacerbation." See below

Exacerbation: A worsening. In medicine, exacerbation may refer to an increase in the severity of a disease or its signs and symptoms. For example, exacerbation of asthma is one of the serious effects of air pollution..
to cause (a disease or its symptoms) to become more severe <her condition was exacerbated by lack of care>
And in our cases, our disease or symptoms are exacerbated by exertion. So the correct term (and one used in medicine) is "exacerbation." Problem is, then PEM becomes PEE. And I'm not posting all this as a joke. I wish this had turned out better. I wonder if we can rework "post exertion" so we don't have PEE.
 

xchocoholic

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I found this article from Pacific Labs study on PEM ...

http://aboutmecfs.org/News/PRJan09Pacific.aspx

Here's a quote on what the testing involves. It's pretty expensive too ... $2000. :eek:

The Stevens Protocol 8-12 minute aerobic exercise tests, resting pulmonary function tests measuring lung function, bioelectrical impedance exams measuring hydration, acoustic nasal rhinometry measuring sympathetic nervous system functioning, reaction time testing evaluating cognitive processing time, and a seven page written evaluation.