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

[Webdog]

At least in Germany there would be no people left for research if people with psychiatric (mis)diagnoses are excluded. I would say nearly everyone here got a psych diagnosis at some point or the other before getting an ME diagnosis. I think this is what you meant, @Webdog?

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).

Diagnosing the disease remains a challenge, and patients often struggle with their illness for years before an identification is made. Some health care providers have been skeptical about the serious physiological — rather than psychological — nature of the illness.

 

[Webdog]

I think he is not applying the IOM criteria correctly. Going from my flawed memory, he used a definition of PEM that would allow a person feeling tired after exertion to count as having PEM. During the NIH common data elements public feedback period it also became apparent that Jason has a view of PEM that is somewhat different from that of the community here. The way the IOM defined PEM was much more in line with patient experience, at least in this community.

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

 

[Inara]

Yes. I've suffered from iron deficiency or iron-deficiency anaemia frequently throughout my life, so I've presented with fatigue/tiredness quite often.

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.

 

[Inara]

that Jason has a view of PEM that is somewhat different from that of the community here.

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

 

[Mij]

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

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.

 

[Arnie Pye]

But I remember that iron deficiency tiredness is closer to feeling "worn-out"

I had iron deficiencies for over 20 years and it's very different from M.E 'fatigue'.

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?

 

[Arnie Pye]

Still I wonder if there are really many people who go to the doctor because of tiredness?

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

 

[Ravn]

I think he is not applying the IOM criteria correctly. Going from my flawed memory, he used a definition of PEM that would allow a person feeling tired after exertion to count as having PEM. During the NIH common data elements public feedback period it also became apparent that Jason has a view of PEM that is somewhat different from that of the community here. The way the IOM defined PEM was much more in line with patient experience, at least in this community.

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

 

[Barry]

If the problem with the ICC is that it specifies too many symptoms - apparently thus capturing people with a primary psychiatric disorder because they will assert most every symptom in the book - I don't see how the solution to that problem is to use a criteria that lists fewer symptoms (like the CCC).

It depends on symptom overlap surely.

 

[Barry]

At least in Germany there would be no people left for research if people with psychiatric (mis)diagnoses are excluded. I would say nearly everyone here got a psych diagnosis at some point or the other before getting an ME diagnosis. I think this is what you meant, @Webdog?

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

 

[Tom Kindlon]

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.