Analysis by Jason - Chronic fatigue syndrome versus systemic exertion intolerance disease

[Dolphin]

From the same paper

 

[A.B.]

I'm surprised to see SEID being so similar to Fukuda. I think Jason isn't properly asking for PEM (which might be intentional since the SEID criteria were vague on this point).

 

[Dolphin]

I'm surprised to see SEID being so similar to Fukuda. I think Jason isn't properly asking for PEM (which might be intentional since the SEID criteria were vague on this point).

These were supposed to be ME or CFS patients. If this was a random sample of the public, I'd say there would be a bigger difference between the numbers satisfying the Fukuda and SEID criteria.

 

[Dolphin]

Not sure whether it's that important but here's another set of statistics from the paper:

Of those who met the SEID criteria,[12] 98% met the CFS Fukuda criteria, [2] 85% met the ME/CFS criteria,[7] 66% met the ME-ICC criteria,[9] and 66% met the four-item empiric criteria.[11]

 

[Scarecrow]

I don't think it's been expressed in this thread but some people seem to make big distinctions between those who satisfy criteria which require lots of symptoms like the International Consensus Criteria and the Canadian Consensus Criteria are criteria that require fewer symptoms like the SEID criteria and make out that they are different groups of patients.

To my mind that's one of the areas where CCC and ICC are weak. I think most of us 'like' them because we feel that someone really understands our disease and that the length of symptoms somehow validates our experience but I have to question whether we should be using such complex definitions that at times apply to a single patient.............but not always. At the start of the year I would have met CCC (once again!) but at the moment I think I'm a symptom or two short. I'm sure I could fulfil CCC/ICC again if I continually forced myself to do more than I can sustain. What kind of a definition is that?

That's why the IOM criteria work, in my opinion. You can improve, as well as worsen, yet you still 'have' the disease.

 

[Scarecrow]

I've just starting reading but has anyone got to the bottom of why only 66% of people who meet SEID met the 4 item empiric criteria?

What's different about the way in which the 4 item criteria are measured?

 

[Dolphin]

I've just starting reading but has anyone got to the bottom of why only 66% of people who meet SEID met the 4 item empiric criteria?

What's different about the way in which the 4 item criteria are measured?

I discuss it a bit in this post: http://forums.phoenixrising.me/inde...ertion-intolerance-disease.38127/#post-634989

 

[Scarecrow]

I discuss it a bit in this post: http://forums.phoenixrising.me/inde...ertion-intolerance-disease.38127/#post-634989

Thanks. I did read that, I understood it, then it went out of my head again.

While with the Jason empiric criteria, you have to answer one specific question. If you said you had problems with all the other neurocognitive symptoms but not this one, one wouldn't satisfy the Jason empiric criteria. I find this very unsatisfactory.

So, the 4 item criteria is based on the most 'typical' symptoms.

I don't find it satisfactory either.

I'm not sure if I've found the correct version of the questionnaire but there are several sleep symptoms

• Unrefreshing sleep
• Need to nap daily
• Problems falling asleep
• Problems staying asleep
• Waking up early in the morning
• Sleep all day and stay awake all night.

Of these, unrefreshing sleep was the most common symptom. If I have difficulty falling asleep, I may wake up in the morning unrefreshed. Likewise if I have difficulty staying asleep. On the other hand I could fall asleep without problems and stay asleep but also wake up unrefreshed. Would the 'real' unrefreshing sleep' please stand up? Where's the small print explaining what is meant by the question?

As for 'difficulty finding the right word to say or expressing thoughts', aren't these two entirely separate symptoms? Note the 'or' (not 'and').

Isn't there a danger of artificially over-representing symptoms because of the way the questions are worded?

 

[Dolphin]

As for 'difficulty finding the right word to say or expressing thoughts', aren't these two entirely separate symptoms? Note the 'or' (not 'and').

I did wonder a little about that but the only one in the list I see is:

Difficulty expressing thoughts

I went back to the paper

Chronic fatigue syndrome and myalgic encephalomyelitis: towards an empirical case definition

and they have

Difficulty finding the right word to say or expressing thoughts

in their tables. But I can't find anything about "right word" in the tables in the current paper so I'm guessing it i.e.

Difficulty finding the right word to say or expressing thoughts

has been abbreviated to

Difficulty expressing thoughts

but there is a chance something else is going on.

 

[Scarecrow]

@Dolphin, I think you're correct about it being abbreviated in the table of the newer paper only. But in the text of that paper, it's the full version:

Four-item empiric criteria
Data mining analyses indicated the selection of four symptoms: fatigue or extreme tiredness, difficulty finding the right word to say or expressing thoughts, physically drained/sick after mild activity, and unrefreshing sleep.[11] In particular, these were all symptoms that appeared in a majority of the 100 classification trees. Individuals with medical or psychiatric conditions that could explain fatigue were excluded from analysis when applying this case definition.

The reference was to the paper eafw provided the link for, which had been submitted to the other journal in Nov 2014 and published Feb 2015.
11. Jason LA, Kot B, Sunnquist M, et al. Chronic fatigue syndrome and myalgic encephalomyelitis: toward an empirical case definition. Health Psych Beh Med: An Open Access J. 2015;3:82–93. doi: 10.1080/21642850.2015.1014489

In that paper, it wasn't similarly abbreviated in Table 3. It looks like an inconsistency rather than a material difference.

So they've conflated two related but ultimately different symptoms. What would be the rational for doing this? I suppose it's in the judgement of the researchers but it seems a bit arbitrary to me.

 

[Effi]

I'm not sure if this is different from the original paper, but this Author Manuscript on the paper was published this week: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4556426/pdf/nihms699325.pdf