Doctors with ME: ME/CFS: Top Tips Handout for Doctors

John Mac

John Mac

Senior Member (Voting Rights)
ME/CFS: Top Tips Handout for Doctors

DIAGNOSIS AND SYMPTOMS
ME/CFS is…
A chronic, complex, multi-system biological illness with often devastating consequences. It affects all age groups including children and all socioeconomic groups. About 75% of sufferers are female. It can affect all aspects of life for people with ME/CFS as well as their families and carers, and has a worse quality of life score than many other serious illnesses such as Cancer, Stroke, Rheumatoid Arthritis and Multiple Sclerosis.

ME/CFS is not…
“Functional” or psychosomatic. It is not anxiety or depression, Medically Unexplained Symptoms (MUS), Perplexing/Persistent Physical Symptoms (PPS), Functional Neurological Disorder (FND), Pervasive Refusal Syndrome (PRS), Fabricated or Induced Illness (FII), eating disorder or any other psychological labels.
Differentiating ME/CFS from Psychiatric Disorders by Dr. Eleanor Stein

Post Exertional Malaise (PEM) / PESE
The cardinal symptom of ME/CFS is Post Exertional Malaise (PEM) / Post Exertional Symptom Exacerbation (PESE). This is the exacerbation of illness that results when a patient’s energy limit is exceeded. Depending on illness severity, it can be triggered by very minor exertion, which can be mental, physical, sensory, orthostatic, social or emotional. The resulting “crash” can be delayed by up to 72 hours, is protracted (lasting days, weeks, months or more) and out of proportion to the trigger. PEM results in marked reduction in activity compared to pre-illness levels. It is an essential criterion in the diagnosis of ME/CFS.

https://doctorswith.me/me-cfs-top-tips-for-doctors/
 
Thats pretty good i reckon.

Although is this a typo?...
John Mac said:
PEM results in marked reduction in activity compared to pre-illness levels.
Click to expand...
having ME to begin with results in marked reduction in activity compared to pre illness levels. Shouldnt it read that, PEM results in marked reduction in activity compared to pre-PEM levels?

I mean one's 'baseline' can be housebound, but then PEM will make you bedbound. ??? what do others think.

Perhaps it was just easier to say it as they have in a very short document
 
John Mac said:
This is the exacerbation of illness that results when a patient’s energy limit is exceeded.
Click to expand...
I still think that's a misconception, or at least it doesn't apply to all PWME. For me it wasn't energy limit; it seemed to be muscle damage that activated the immune system, at least for physical exertion. A 30 km bike ride (with steep hills) requires a lot more energy than climbing 10' up a ladder, or washing one small window, yet the latter two triggered my PEM while the former didn't. For me it seemed to be the use of muscles in ways they weren't accustomed to, thus causing the microtears that require clean-up.
 
JemPD said:
having ME to begin with results in marked reduction in activity compared to pre illness levels. Shouldnt it read that, PEM results in marked reduction in activity compared to pre-PEM levels?
Click to expand...

I agree, the thing about pre-illness isn't even required. "PEM results in a marked reduction in activity", full stop.

Or better still, "PEM necessitates a marked reduction in activity".
 
JemPD said:
Thats pretty good i reckon.

Although is this a typo?...
having ME to begin with results in marked reduction in activity compared to pre illness levels. Shouldnt it read that, PEM results in marked reduction in activity compared to pre-PEM levels?

I mean one's 'baseline' can be housebound, but then PEM will make you bedbound. ??? what do others think.

Perhaps it was just easier to say it as they have in a very short document
Click to expand...

Agreed. Suggestions:

1) PEM worsens the debilitation normally experienced by persons with ME.

2) ME is a disabling disease, punctuated by increased debility known as Post Exertional Malaise (PEM).

3) Post Exertional Malaise, the cardinal symptom of ME, magnifies the disabling symptoms normally experienced by persons with this disease.

4) Everyday, and even minimal activity may exacerbate the debility experienced by persons with ME. This increase in symptoms is known as PEM, post exertional malaise. PEM can last for days, weeks, or months. Increased activity, may permanently reduce the already severely restricted life of persons with ME.
 
John Mac said:
ME/CFS: Top Tips Handout for Doctors

DIAGNOSIS AND SYMPTOMS
ME/CFS is…
A chronic, complex, multi-system biological illness with often devastating consequences. It affects all age groups including children and all socioeconomic groups. About 75% of sufferers are female. It can affect all aspects of life for people with ME/CFS as well as their families and carers, and has a worse quality of life score than many other serious illnesses such as Cancer, Stroke, Rheumatoid Arthritis and Multiple Sclerosis.

ME/CFS is not…
“Functional” or psychosomatic. It is not anxiety or depression, Medically Unexplained Symptoms (MUS), Perplexing/Persistent Physical Symptoms (PPS), Functional Neurological Disorder (FND), Pervasive Refusal Syndrome (PRS), Fabricated or Induced Illness (FII), eating disorder or any other psychological labels.
Differentiating ME/CFS from Psychiatric Disorders by Dr. Eleanor Stein

Post Exertional Malaise (PEM) / PESE
The cardinal symptom of ME/CFS is Post Exertional Malaise (PEM) / Post Exertional Symptom Exacerbation (PESE). This is the exacerbation of illness that results when a patient’s energy limit is exceeded. Depending on illness severity, it can be triggered by very minor exertion, which can be mental, physical, sensory, orthostatic, social or emotional. The resulting “crash” can be delayed by up to 72 hours, is protracted (lasting days, weeks, months or more) and out of proportion to the trigger. PEM results in marked reduction in activity compared to pre-illness levels. It is an essential criterion in the diagnosis of ME/CFS.

https://doctorswith.me/me-cfs-top-tips-for-doctors/
Click to expand...

This looks really good. Well done Doctors with ME. I'd be very happy to show this to my GP.
 
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