Is the NIH/CDC going to use the right PEM definition for all their future research? Do patients need to act? Deadline 31 Jan

Simon M said:
  • A flare of some or all of an individual’s symptoms,
  • with an immediate or delayed onset and
  • with prolonged recovery.
  • Severity and duration of symptoms are out of proportion to the initial trigger.
  • There is a loss of functional capacity and/or stamina.
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I couldn't read all you posted so I will just add to what you summarized above.
  • A flare of some or all of an individual’s symptoms which includes but is not limited to fatigue,
  • with an immediate or delayed onset of 24-72 hrs and
  • with prolonged recovery which can take 1 day to 2 weeks.
  • Severity and duration of symptoms are out of proportion to the initial trigger whether it was physical or mental exertion or both.
  • There is a loss of functional capacity and/or stamina.
Each bullet should have further explanations such as an explanation of "fatigue" in that it is not a healthy "tiredness" (perhaps the last bullet is describing it but perhaps that should be the second bullet) and what is meant by "recovery". And if anyone is able to briefly describe what fatigue in our disease means as well as what a recovery from symptoms is as no doubt a patient will still experience their symptoms even when they recover after a trigger, I would appreciate it because I am unable to put it into words.

Also, "functional capacity" and "stamina" may have to have a short explanation because very often patients do not understand what these words are conveying due to lack of education or English not being their first language and/or their cognitive abilities being compromised. Prior to my becoming very aware of my disease, I would bet I would not have answered these questions properly. I could barely read and get through the forms at my rheumatologist's office. Due to my cognitive problems, I even forgot what the word cognition meant.
 
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I am responding without reading more than the original post (which should prevent subsequent responses influencing my view).

I don't think the DSQ does a good job at capturing PEM.

Dead, heavy feeling after starting to exercise.
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It sounds like this refers to an effect that occurs during exercise, and if so, I don't recognize this as PEM. PEM is post-exertional (in my experience, and by definition). I also don't feel dead.

Next day soreness or fatigue after non-strenuous, everyday activities.
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This is better because it revolves around the concept of "symptoms on the next day", but soreness or fatigue is only a part of these symptoms.

Mentally tired after the slightest effort.
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Fairly accurate, but it would be even better to phrase it as "abnormally high fatigueability" which is important. Nitpicking: I suspect that this is what leads to PEM, and isn't strictly speaking part of it (which is the reaction that comes later).

Minimum exercise makes you physically tired.
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Too unspecific. This probably applies to many diseases.

Physically drained or sick after mild activity.
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Same thing as the "mentally tired after the slightest effort".

In my view the best definition of PEM is one that emphasizes the "next day symptoms" and the symptoms that are unusual to get in response to exertion (feeling exhausted and sick, CNS and ANS symptoms, immunological, etc). Generic items like "tiredness after exercise" are too unspecific. I also like the idea of "prolonged recovery" and "negative reaction out of proportion with exertion".
 
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Suggestion from Facebook, "Parish and Ramsay defined it well and it’s part of the criteria for ME.".

From what I've been quickly able to find the Ramsay definition of ME doesn't have anything in it that I recognise as PEM at first glance, and I'm not sure where Parish is involved with a definition. Any thoughts?
 
Simon M said:
The problem is that PEM is a function of disease level, but also of pacing and life circumstances. As the report note elsewhere, “many ME/CFS patients use strategies to avoid and/or to minimize the impact of PEM”.
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Ask patients about the illness onset. Even if they have been successfully minimizing PEM for the last few years, they should vividly remember how their life fell apart with the onset of the illness and their failed attempts to resume their previous activity levels.
 
Andy said:
How about I reverse it? "Do you experience any of the following after you have exceeded your own exertion limit?"?
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I guess I would prefer it with as few pre-suppositions, or pre-determinations, as possible (even though it's obvious to us that there is a threshold).

Either way, though, provided what follows, ie the description, is accurate, anyone with ME would immediately recognise post-exertional malaise, even if they had it under control through pacing, and were free of it at the time of asking, whereas anyone who had never experienced PEM would be weeded out, which is the point of the questionnaire :).
 
MeSci said:
I find this difficult, as it was about 23 years ago and was very gradual.
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Yes, I agree that for many it is harder to pinpoint. I had the worst case of Mono the doctor ever saw and at least have a test that helps define my onset...somewhere in my records 40 years ago. My current doctor lost copies of everything I brought over to him and I am too frustrated to try to get my doctor to forward them again.
 
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strategist said:
Ask patients about the illness onset. Even if they have been successfully minimizing PEM for the last few years, they should vividly remember how their life fell apart with the onset of the illness and their failed attempts to resume their previous activity levels.
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I would think so.
But i’m a relatively recent onset and over the New Year someone asked me if I think i’m trending better or worse. I said that my attitude toward it changes what it looks like from the outside, which is true, but I implied no change.

I simply forget what i’m like when it’s bad.

I have to review my notes to remember just how bad I get. It’s like my brain is trying to compartmentalise experiences that are profound PEM.

I recently rewatched a YouTube clip that I saw when I was trying to get my head around the idea of proactive rest.

Then I remembered what it felt like, what the experience was, and wow, I’m incredibly better than I was.

(I believe this is due to draconian pacing.)

ETA my point is that PEM definitions were what made me take this seriously and make improvement. This is very important. For me, delayed onset helped me crack the puzzle of activity to symptoms. The concept of PEM is central.

ETA 2: sorry if this is OT, I will review and edit it down later. Need to stop again.

Edit 3: to increase spacing
 
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A few years ago, at a meeting arranged by the The Massachusetts CFIDS/ME & FM Association, Dr. Anthony Komaroff was asked how he would distinguish patients with depression from patients with ME/CFS. To do so, he gave a really succinct description of PEM.

"I would say, though, as a doctor who has taken care of patients with major depression for many years, I can’t recall a single instance of someone with major depression saying:
​
'The strangest thing has been happening to me, Doctor.
Whenever I do anything... any physical exertion...
the next day I feel completely beat up.'​
​
I’ve never heard that - from any patient with any illness other than people with chronic fatigue syndrome."​

-Anthony Komaroff
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​
 
Melanie said:
an explanation of "fatigue" in that it is not a healthy "tiredness"
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Also, when filling out forms in doctor's offices I often come across a symptom like PAIN with options to circle descriptions. The form might have the question "Do you experience PAIN after (circle all that apply: walking, driving, exercise, grocery shopping, after awakening) and what types of PAIN do you experience (circle all that apply: shooting, lightning, pulsing, muscle widespread, muscle localized, muscle spasms)? If you wish, go into further detail as to when, where on body, and type. ______________________________________________________________________________________
______________________________________________________________________________________________________________________________________________________________________________________

They will even have a graphic of a body, front and back, and ask you to draw in circles, lines, zig-zags describing the different types of pain corresponding to a key they provide.

So having options to explain your symptom helps the patient understand the ways the symptom can present itself and begins to give the doctor a picture of the way the patient is experiencing that symptom. Fatigue in our disease can be expressed as an unhealthy tiredness, weakness, mental exhaustion, mental confusion, etc. Researchers can begin to see if the patient really is experiencing PEM and the types and severity for classification purposes. Then, I would hope, they would put them through the 2-day (perhaps it should be 3-day) exercise test.
 
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Sasha said:
But isn't Simon suggesting that a PEM measure shouldn't be measuring severity or frequency? That what matters is whether someone gets PEM, not how badly, and regardless of the exertion threshold that caused it?
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Yes, I guess it was my point ( I tried to make) the first set I don’t like because it meassured more severity than yes or no to PEM.ñ ( like the second does).
 
Simon M said:
Consultation:

Anyone can write in, anytime – up til Jan 31st deadline. Should we combine to offer comments on PEM? Anyone at S4ME have an opinion on this? @Andy @Valentijn. I guess it depends on how the discussion goes.

“We are in the process of finalizing these documents and would like to urge you to help by contributing your expertise during this public review period.

Please send all comments to NINDSCDE@emmes.com by January 31, 2018.

After this open comment period, the ME/CFS Working Group will review and revise the recommendations. Version 1.0 of the ME/CFS CDE recommendations will be posted at the end of February 2018.”
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It would be nice if the S4ME community arrived at a consensus and produced a recommendation that's signed "The Science for ME community" or something along those lines. Get our brand out there ;)
 
Even the word "exertion" troubles me.

We seem to have "activity", "exertion" and "over-exertion" being used interchangeably.

The word "exertion" may suggest merely activity or exercise, but would generally imply some level of activity above a normal base rate. The problem with PEM is often that one may not feel any exertion. One is merely active, and even then only active at a fairly low level. "Exertion" may only be recognised after the event.

I would say (to myself) "exert yourself" only if I thought I was not trying hard enough. It is not necessary to have that feeling to experience PEM.
 
chrisb said:
The word "exertion" may suggest merely activity or exercise, but would generally imply some level of activity above a normal base rate. The problem with PEM is often that one may not feel any exertion. One is merely active, and even then only active at a fairly low level. "Exertion" may only be recognised after the event.
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Exactly. PEM is difficult to manage because I can feel good while doing too much, and only start feeling bad afterwards (usually next day).
 
I agree with a great deal of what's been said here, and want to second my thanks for raising it. I'm not really sure how to move it forward, though. I decided to try laying out a questionnaire about specific symptoms, including some that aren't really typical of ME (in my case, at least). It's quite a difficult task, but I wondered if it's worth considering? I'm sure many of us have been subjected to similar mental health questionnaires over the years, and clinicians trying to assess people for mental ill-health do seem to find them useful.

This is in no way a comprehensive list, as my brain function isn't really good enough to tackle it at the moment, but I thought I'd post it to see if folk think it could be helpful. I don't mind if you don't; the best way for us to make progress is to eliminate strategies which are either too easy to pull apart, or too unspecific to be useful. Here goes – the symptoms in italics are the ones that aren't typical of my experience of ME:

PHYSICAL

Types of physical movement likely to trigger symptoms – please tick all that apply, and cross out any you are unable to do at all:

· Walking inside house/apartment
· Walking outdoors
· Sitting upright
· Eating
· Light household cleaning
· Reading
· Speaking
· Washing
· Use of computer, tablet or phone
· Writing
· Dressing

Symptoms resulting from physical movement – please tick all that apply:

· Twitching muscles
· Muscle pain
· ‘Foggy’ thinking or confusion
· Swollen glands
· Pins and needles
· Prolonged exhaustion
· Headache or migraine
· Burning sensation in limbs
· Knee pain
· Upset stomach
· Feeling as if you have ‘flu
· Greater sensitivity to light
· Greater sensitivity to noise
· Decreased ability to socialise
· Low mood
· Difficulty with reading/fine focus
· Poor short-term memory

Average time before onset of significant symptoms after physical movement – please tick one:

· Immediate
· 2 – 6 hours
· 6 – 12 hours
· 12 – 24 hours
· 24 – 48 hours
· More than 48 hours

Recovery time from symptoms triggered by physical movement

· Less than 2 hours
· 2 – 6 hours
· 6 – 12 hours
· 12 – 24 hours
· 24 – 48 hours
· More than 48 hours

MENTAL

Types of mental effort likely to trigger symptoms – please tick all that apply, and cross out any you are unable to do at all:

· Reading
· Watching TV
· Listening to radio, podcasts or audiobooks
· Conversation with another person
· Worrying or anxiety
· Use of computer, tablet or phone
· Hearing music
· Pressure to socialise
· Having a familiar person in the room with you

Consequences of mental effort – tick all that apply:

· Headache or migraine
· Prolonged exhaustion
· ‘Foggy’ thinking or confusion
· Low mood
· Greater sensitivity to light
· Greater sensitivity to noise
· Feeling as if you have ‘flu
· Muscle tension
· Decreased ability to socialise
· Poor short-term memory
· Feeling irritable

Average time before onset of significant symptoms after mental effort – please tick one:

· Immediate
· 2 – 6 hours
· 6 – 12 hours
· 12 – 24 hours
· 24 – 48 hours
· More than 48 hours

Recovery time from symptoms triggered by mental effort:

· Less than 2 hours
· 2 – 6 hours
· 6 – 12 hours
· 12 – 24 hours
· 24 – 48 hours
· More than 48 hours

ENVIRONMENTAL

Types of environmental stressors likely to trigger symptoms – please tick all that apply, and cross out any you are unable to tolerate at all:

Visual

· Sunlight
· TV, computer, tablet or phone screen
· Other people
· Indicator lights on electrical appliances
· Fluorescent lights

Hearing

· Ticking clock
· People talking
· TV
· Fan
· Telephone ringing
· Traffic
· Music

Olfactory (smell)

· Volatile chemicals such as paint, perfume, cleaning products, gasoline/petrol
· Cooking food
· Domestic pets

Consequences of experiencing environmental stressors – tick all that apply:

· Headache or migraine
· Prolonged exhaustion
· Nausea or vomiting
· ‘Foggy’ thinking or confusion
· Low mood
· Feeling as if you have ‘flu
· Decreased ability to socialise
· Muscle tension
· Poor short-term memory
· Feeling irritable

Average time before onset of significant symptoms after experiencing environmental stressors – please tick one:

· Immediate
· 2 – 6 hours
· 6 – 12 hours
· 12 – 24 hours
· 24 – 48 hours
· More than 48 hours

Recovery time from symptoms triggered by experiencing environmental stressors

· Less than 2 hours
· 2 – 6 hours
· 6 – 12 hours
· 12 – 24 hours
· 24 – 48 hours
· More than 48 hours
 
Melanie said:
I couldn't read all you posted so I will just add to what you summarized above.
  • A flare of some or all of an individual’s symptoms which includes but is not limited to fatigue,
  • with an immediate or delayed onset of 24-72 hrs and
  • with prolonged recovery which can take 1 day to 2 weeks.
  • Severity and duration of symptoms are out of proportion to the initial trigger whether it was physical or mental exertion or both.
  • There is a loss of functional capacity and/or stamina.
Each bullet should have further explanations such as an explanation of "fatigue" in that it is not a healthy "tiredness" (perhaps the last bullet is describing it but perhaps that should be the second bullet) and what is meant by "recovery". And if anyone is able to briefly describe what fatigue in our disease means as well as what a recovery from symptoms is as no doubt a patient will still experience their symptoms even when they recover after a trigger, I would appreciate it because I am unable to put it into words.

Also, "functional capacity" and "stamina" may have to have a short explanation because very often patients do not understand what these words are conveying due to lack of education or English not being their first language and/or their cognitive abilities being compromised. Prior to my becoming very aware of my disease, I would bet I would not have answered these questions properly. I could barely read and get through the forms at my rheumatologist's office. Due to my cognitive problems, I even forgot what the word cognition meant.
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I disagree with saying recovery can take 1 day to two weeks! I am severely affected and have had relapse taking 18 months to recover from, another relapse 6 months, and I suppose the relapses that made me severely affected in the first place have lasted so far over 20 years!
 
It does depend on how severely affected we are. My recovery from PEM depends on how much I went over my 'limit'. I've been very careful the last couple of years and have avoided it completely. My 'normal' recovery from going over a little is usually 48-72 hours.
 
My, personal, impression was it wasn't so much how over the limit, it was how long I continued once the limit had been breached (IRL it is frequently not possible to just stop, even if I am aware of the problem), and how much I continued to operate, under the now reduced limit, whilst PEM'd (over the next few days/weeks).

This distinction is I believe what takes people from severe to very severe, and reduces baselines, just the simple act of being alive can become above the "limit" and an ever increasing PEM spiral develops.
 
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