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Subtyping Patients with ME and CFS By Course of illness (Dr Jason and team)

Kati

Patient in training
Messages
5,497
Subtyping Patients with Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) By Course of Illness

Jamie Stoothoff, Kristen Gleason, Stephanie McManimen, Taylor Thorpe and Leonard A. Jason
(Access the full text by clicking the title)

FullSizeRender.jpg
 

RogerBlack

Senior Member
Messages
902
Looking at the mean age, minus time since illness puts the mean age of diagnosis at 25.
That seems high.
(I know this is statistically inaccurate.)
It is a shame that age of patient reported onset is not reported.

I need to re-read the paper when I'm awake.

This is a review of data they obtained from other scientists.
Showing the importance of sharing data freely.
 
Last edited:

me/cfs 27931

Guest
Messages
1,294
Looking at the mean age, minus time since illness puts the mean age of diagnosis at 25.
That seems high.
(I know this is statistically inaccurate.)
It is a shame that age of patient reported onset is not reported.
Agreed. Decades can separate onset from diagnosis.

Another thing: this disease can change "subtypes". I would described it as "relapse/remitting" for the first 22 years, then "fluctuating" for the next 17 years. Not sure how a patient like me would be classified in this study.
 

RogerBlack

Senior Member
Messages
902
Agreed. Decades can separate onset from diagnosis.

Another thing: this disease can change "subtypes". I would described it as "relapse/remitting" for the first 22 years, then "fluctuating" for the next 17 years. Not sure how a patient like me would be classified in this study.

As I understand it, it's at time of report.
Which yes, is a problem.
It is _INSANE_ that modern trials don't get approval for 'light touch' contact of patients.

Being able to ask the ~700 people by email/... even if that has logistical problems even a 5 question multiple choice questionaire would have enormous benefit.

For the above study, for example 'has your work status changed', 'when do you believe your illness first started', 'has your illness progression changed since you reported it was X', 'are you better or worse than then', ...
 
Messages
1,478
Agreed. Decades can separate onset from diagnosis.

Another thing: this disease can change "subtypes". I would described it as "relapse/remitting" for the first 22 years, then "fluctuating" for the next 17 years. Not sure how a patient like me would be classified in this study.
I thought exactly this. Even for the short period I have had this I would say that the first year was constantly getting worse, then when I started pacing and doing less the second year constantly improving, for the 3 years since then fluctuating.

it seems this is a little open to interpretation? I think sub-types can only be determined by biomedical profiling to make any sense.

The biggest fact that was shocking was how little were working as opposed to retired or on disability. I thought it would be higher for the mild\moderate split.
 

RogerBlack

Senior Member
Messages
902
The biggest fact that was shocking was how little were working as opposed to retired or on disability. I thought it would be higher for the mild\moderate split.

I have not properly looked.
But, from my skim of the paper, there is significant risk this is biased.
The samples in question were point-of-time studies of people mostly in secondary care clinics.

If you're stable enough to be working, then you will 'rapidly' in most cases stop going to a secondary care clinic and fall off the books.
 

hixxy

Senior Member
Messages
1,229
Location
Australia
If 1.9% are constantly getting better without being relapsing remitting shouldn't they no longer have ME?
 

RogerBlack

Senior Member
Messages
902
If 1.9% are constantly getting better without being relapsing remitting shouldn't they no longer have ME?

Eventually, but not perhaps at that moment. You can be constantly climbing a hill without having reached the top.

I've raised before the question of if anyone truly gets better.

If you can't do a marathon (whatever your time) and then do another in 5 days (again, whatever your time) without getting PEM (you will of course get many symptoms that in some ways mimic it), you've still got CFS.
 

Kati

Patient in training
Messages
5,497
If you can't do a marathon (whatever your time) and then do another in 5 days (again, whatever your time) without getting PEM (you will of course get many symptoms that in some ways mimic it), you've still got CFS.
Hi @RogerBlack this sentence is confusing to me, what are you trying to say?
 

RogerBlack

Senior Member
Messages
902
Hi @RogerBlack this sentence is confusing to me, what are you trying to say?

Makes sense to me.

Anyway.
If extreme exercise causes atypical physical responses beyond normal reaction to exercise, and brings back ME/CFS symptomps, you're not cured. And the question is, in that case, are people who are 'cured' at really high risk of relapsing again, even if they don't do the extreme exercise, with a stress, virus, or other challenge.

This is assuming that experiencing PEM is correlated with the risk of relapse.
 

Kati

Patient in training
Messages
5,497
Makes sense to me.

Anyway.
If extreme exercise causes atypical physical responses beyond normal reaction to exercise, and brings back ME/CFS symptomps, you're not cured. And the question is, in that case, are people who are 'cured' at really high risk of relapsing again, even if they don't do the extreme exercise, with a stress, virus, or other challenge.

This is assuming that experiencing PEM is correlated with the risk of relapse.
Dr Bell said a few years ago that his long time patients who believed they were 'back to normal' were not recovered but they simply learnt to live within their limitations.

However you (not specifically you, @RogerBlack) will notice that the 'constantly improving' group is N=10 amongst 541 total study participants. A very small fraction.
 

Dolphin

Senior Member
Messages
17,567
Finally, the Constantly Improving group, comprising 1.9% of the total sample, consistently displayed a pattern of lower frequency and severity for symptoms on the DSQ and better overall functioning as demonstrated on the SF-36 subscales. Additionally, on average this group tended to expend more energy than they had available. This supports past research which suggests that some patients may be more able to overextend themselves with little consequence to their symptomology and functioning [27].
Though there was no difference on the energy quotient compared to the other groups i.e. the ratio of energy expended compared to energy available.

However, as only a small proportion (n = 10) of the present sample endorsed Constantly Improving as their illness trajectory, the conclusions that can be drawn about their illness experiences are limited. Nonetheless, the fact that there are so few participants within this subtype supports findings that suggest recovery from these debilitating illnesses is rare [28].
It is quite possible that a lot of the people constantly improving wouldn't have taken part. But it could be interesting how small this group is.
 

Dolphin

Senior Member
Messages
17,567
the approach taken had several limitations. First, it is difficult to assess participants’ illness experiences over time when using measures completed at a single time point.