Reflections on the Institute of Medicine's systemic exertion intolerance disease

[Dolphin]

One interesting finding in this is that ME criteria, which I believe are the Goudsmit et al. (2009) criteria from something Ellen posted on a list i.e.

Goudsmit, EM, Shepherd, C., Dancey, CP and Howes, S. ME: Chronic fatigue syndrome or a distinct clinical entity? Health Psychology Update, 2009, 18, 1, 26-33.
Updated: http://www.foodsmatter.com/me_and_cfs/cfs_me_causes_general/articles/goudsmit-me-clinical entity-10-12.html

did not pick up many of the ME/CFS patients (only 20%, much lower than other criteria)

The current paper says on this:

It is of interest that the ME case definition of Ramsay identified the fewest patients (20%), and this was primarily due to the criteria requiring a sudden onset of symptoms.

ETA:
I looked up reference 14 in the current paper and it looks like it was the criteria in Jason et al. (2012) that were used

Several years later, Jason, Damrongvachiraphan, et al.(2012) attempted to better operationalize the ME criteria, based on the work of a number of theorists and practitioners (Dowsett et al.,1994; Dowsett et al., 1990; Goudsmit et al.,2009; Hyde et al., 1992; Ramsay, 1988). When Jason, Brown, et al. (2012)applied these revised criteria to a data set of patients diagnosed with CFS according to the Fukuda et al.(1994) criteria, those with ME were more functionally impaired. However, the prior studies comparing ME with CFS had several limitations, including the fact that the patients were all selected by initially meeting the CFS Fukuda et al.(1994) criteria and were from one urban area in the United States.

Jason, L. A., Damrongvachiraphan, D., Hunnell, J., Bartgis, L., Brown, A., Evans, M.,
&Brown, M.(2012). Myalgic Encephalomyelitis: Case definitions. Autonomic
Control of Physiological State and Function, 1,1–14. Retrieved from http://
www.ashdin.com/journals/ACPSF/K110601.pdf

 

[Sasha]

One interesting finding in this is that ME criteria which I believe are the Goudsmit et al. (2009) criteria from something Ellen posted on a list i.e.

did not pick up many of the ME/CFS patients (only 20%, much lower than other criteria)

The current paper says on this:

Were the Ramsay criteria based on the Royal Free and other outbreaks? If so, I can understand why sudden onset as a criterion would have made sense at the time.

 

[Dolphin]

It is concerning that so many students satisfied the SEID criteria. However, the figure was almost the same for the Fukuda criteria (18% vs 17%):

In the DePaul sample, 18% of undergraduates met the SEID criteria, whereas in the Bio‑Bank sample, only 4% of controls met the SEID criteria. Comparable findings were also found for those diagnosed with the general Fukuda et al.4 criteria, but not the other more restrictive criteria.

We know that nothing like 17% of students would satisfy the Fukuda criteria so we can probably guess the real figure for SEID among students would be a lot lower also.

 

[Dolphin]

Some info on the current state of play:

The term myalgic encephalomyelitis (ME) had initially been used to refer to this illness, but the Centers for Disease Control subsequently renamed the illness CFS. 18 Patients felt that the word “fatigue” trivialized their illness, as fatigue is generally regarded as a common symptom experienced by many otherwise healthy individuals. To provide a concrete example, if bronchitis or emphysema were called “chronic cough syndrome,” this name would similarly trivialize these conditions. In addition, patients believe that the name CFS has contributed to the negative attitudes expressed by health care providers and the general public toward individuals with the illness. Even though CFS is an illness as debilitating as type 2 diabetes mellitus, congestive heart failure, multiple sclerosis, and end‑stage renal disease, 95% of individuals seeking medical treatment for CFS reported feelings of estrangement 19 ; 85% of clinicians view CFS as a wholly or partially psychiatric disorder 20 ; and hundreds of thousands of patients cannot find a single knowledgeable and sympathetic physician to care for them. 21

19 Green J, Romei J, Natelson BJ. Stigma and chronic fatigue syndrome. Journal of Chronic Fatigue Syndrome. 1999; 5: 63‑75.

20 Unger E, Brimmer DJ, Boneva RS, et al. CFS knowledge and illness management behavior among U.S. healthcare providers and the public. Paper presented at the IACFS/ME conference; Ottawa, CA; 2011.

21 Tidmore T, Jason LA, Chapo‑Kroger L, et al. Lack of knowledgeable healthcare access for patients with neuro‑endocrine‑immune diseases. Frontiers in Clinical Medicine. 2015; 2: 46‑54

 

[halcyon]

Were the Ramsay criteria based on the Royal Free and other outbreaks? If so, I can understand why sudden onset as a criterion would have made sense at the time.

Ramsay's criteria were based on both endemic and epidemic cases. I'm sure many or even most endemic cases were sudden onset as well.

 

[jimells]

It is concerning that so many satisfied students satisfied the SEID criteria. However, the figure was almost the same for the Fukuda criteria (18% vs 17%):


We know that nothing like 17% of students would satisfy the Fukuda criteria so we can probably guess the real figure for SEID among students would be a lot lower also.

How do we know 17% of students can not meet Fukuda? I realize it's way out of line with other prevalence numbers. Still, my impression is that Fukuda includes many chronic fatigue patients who don't have PEM or our illness. Considering the pressures of college life, including lack of sleep, I would expect many college students to have "chronic fatigue". I know I should look this up, but it's too much trouble right now.

I think the key phrase here is

but not the other more restrictive criteria

and this is what I expect. If more restrictive criteria also found very high rates of illness, that would be a red flag for sure.

85% of clinicians view CFS as a wholly or partially psychiatric disorder 20
20 Unger E, Brimmer DJ, Boneva RS, et al.

The psychobabblers must have been very gratified to learn that their propaganda campaign against us has been so successful. A stunning achievement, for sure. Unger's bosses must have been very pleased with these results, so why does it appear to be unpublished? At least, I could not find it on Pubmed. Is there another place I should look?

 

[Dolphin]

Still, my impression is that Fukuda includes many chronic fatigue patients who don't have PEM or our illness.

In the Chicago population study, 75% had post-exertional malaise or 25% didn't.

How many do people want to throw out? I think 25% is reasonable. Who knows what some people think but if you throw out lots, the prevalence rates for the illness overall will drop too.

The Chicago prevalence study found a prevalence of 0.422% using the Fukuda over all adults and 0.315% among 18-29 year olds http://emerge.org.au/wp-content/upl...CFS.-Arch-Intern-Med-1999-15918-2129-2137.pdf (and the CDC 0.235% overall). I'm not sure we have good data on students. But it's hard to imagine that one would get a prevalence rate of 0.315% for 18-29 year olds if 17% of students satisfied Fukuda.

 

[Dolphin]

It's not clear how the SEID criteria were operationalised in this study for control groups.

In another Jason et al. (2015) paper, Unintended Consequences of not Specifying Exclusionary Illnesses for SEID (Jason 2015), definitions weren't used that were comparable to the SEID criteria:

"The diagnosis of ME/CFS should be questioned if patients do not have these symptoms at least half of the time with moderate, substantial, or severe intensity"

This is what was used in that paper:

Study 1:

To meet the post-exertional malaise criteria, a patient would need to have indicated presence of at least 1 of our two post-exertional malaise symptoms: sickness/fatigue for >24 h after exercising or experiencing high levels of fatigue after everyday activity.

Study 2:

To meet the post-exertional malaise criteria, a patient needed to have 6 or more months of post-exertional malaise.

Study 3:

To meet the post-exertional malaise criteria, a patient needed to report the occurrence of one of the following symptoms: prolonged generalized fatigue or malaise following previously tolerable levels of exercise, feeling generally worse than usual or fatigued for 24 h or more after exercise, or exercise brings on my fatigue.

Study 4:

To meet the post-exertional malaise criteria, a patient would need to have a frequency of at least some of the time and severity score of at least moderate to indicate prolonged levels of malaise following previously tolerated exercise.

So only Study 4 has the required severity ("at least moderate"). None mention that the symptom is required "at least half of the time".

 

[jimells]

I'm not sure we have good data on students. But it's hard to imagine that one would get a prevalence rate of 0.315% for 18-29 year olds if 17% of students satisfied Fukuda.

Thanks for digging out all these details. They cast a lot of doubt on the reported numbers. I guess it's up to each person to judge how much that doubt should affect the rest of the report.

 

[Snow Leopard]

Round and round we go. Authorities "Listening" but never quite listening to patients.