David Tuller - Trial By Error: A Q-and-A with Leonard Jason, on Case Definition

Yes.

Even in the United States, there are medical providers who in the past refused to diagnose anyone with ME/CFS. So any ME/CFS patients they have would be undiagnosed or misdiagnosed (likely as psychiatric).

 

From the IOM report, a breakdown of PEM symptoms. http://nationalacademies.org/hmd/~/media/Files/Report Files/2015/MECFS/MECFS_KeyFacts.pdf

 

That's a good one.
But I remember that iron deficiency tiredness is closer to feeling "worn-out" (I hope that's the correct word...), no?

I confess I tend/tended to go to the doctor only if I really felt terrible or someone told me it would be better to go. That's maybe not the best thing to do.
Still I wonder if there are really many people who go to the doctor because of tiredness?

Today I saw two young women. One of them talked about a questionnaire: "Do you feel tired in the morning? - Haha, of course, I feel tired every morning." She went there, and she looked so vibrant and fresh and fit.
I knew in that moment that "chronic fatigue" and "fatigue" is not what this woman seemed to experience and it is not what we experience.

 

What puzzles me: Doesn't Leonard Jason have ME, too? I thought I read it somewhere. Shouldn't he know PEM if yes?

 

I had iron deficiencies for over 20 years and it's very different from M.E 'fatigue'. When my iron stores got low I felt like crying and got dizzy/out of breath when I bent over or climbed a few steps.

 

I agree that there are different types of tiredness, fatigue, or exhaustion. As well as frequently being iron deficient I also had untreated hypothyroidism for most of my life, and the way these two conditions affect me isn't the same. I've never been diagnosed with ME or CFS, so whether I even have the condition is debatable. I have no plans to seek a diagnosis though. I don't think it would improve my situation at all, so why bother?

 

I forgot to mention that being "Tired All The Time", which is referred to by its initials (TATT) in the UK, is the commonest single reason for seeing a GP that there is, as far as I'm aware.

Here's what the patient.info site has to say, for what it's worth :

https://patient.info/doctor/fatigue-and-tatt

Edit : I should have added this shocker as well :

https://www.nhs.uk/Livewell/tiredness-and-fatigue/Pages/why-am-I-tired.aspx

 

Seems to me the same faulty logic based on linguistic similarities that equates the symptom CF with the illness CFS is happening all over again with PEM: the symptom 'post-exertional fatigue' (aka exercise intolerance) is confused with the 'illness' PEM.

Of course exercise intolerance can be a strong feature of PEM just like fatigue can be a strong feature of ME/CFS but that doesn't make them the same thing.

Example: A patient with heart failure will probably feel excessively exhausted after only minimal activity. That's exercise intolerance. It's not PEM.

 

It depends on symptom overlap surely.

 

Yes, there is a something of a chicken and egg problem.

 

I disagree a definition with more symptoms brings in more psych patients. The same patients by definition would also satisfy a definition with fewer of the same symptoms. It's basic set theory. You don't suddenly get new patients by adding stricter criteria/more symptoms.