Solving the ME/CFS criteria and name conundrum: the aftermath of IOM, 2020, Jason & Johnson

[adambeyoncelowe]

There's significant overlap in his list with symptoms of atypical depression. I have never been satisfied with this list.

It needs to include delay, prolonged recovery and a disproportionate effect. There also needs to be recognition of physical symptoms causing cognitive problems and vice versa.

 

[Mij]

The cardiovascular system is not mentioned at all. Autonomic dysfunction? This is the most distressful symptom I experience. I can't stand upright, ataxia, slurring words, loss of appetite, dehydration, feeling very hot etc

 

[Invisible Woman]

There's significant overlap in his list with symptoms of atypical depression. I have never been satisfied with this list.

It needs to include delay, prolonged recovery and a disproportionate effect. There also needs to be recognition of physical symptoms causing cognitive problems and vice versa.

Absolutely - my list wasn't meant to be exhaustive by any means.

If we're going to link illnesses in any way then it would be more beneficial to tease out the differences rather than just assume they're all alike. Maybe the differences in the details might tell us something, because treating them all the same clearly doesn't work.

 

[adambeyoncelowe]

Absolutely - my list wasn't meant to be exhaustive by any means.

If we're going to link illnesses in any way then it would be more beneficial to tease out the differences rather than just assume they're all alike. Maybe the differences in the details might tell us something, because treating them all the same clearly doesn't work.

I shouldn't have quoted your post. I meant Jason's PEM items, not your list. I'll edit for clarity.

 

[Mithriel]

The way even experts don't seem to know what we get is infuriating. Listen to us!

We get all the same symptoms of fatigue and post exertional problems that other illnesses do, for the same reasons. We are seriously ill and our bodies struggle all the time.

But the unique thing about ME is all the other things we get after exertion that no one else experiences. Lily Chu's paper where she got people to describe things showed this quite clearly. Other illnesses experienced similar fatigue states but people with ME had immune activation and long delays before they knew they had overexerted.

The purely ME problems may be masked in some patients especially ones who are too ill to exert very much but research should be done on those who clearly have it. That is the only way we will find out what is going wrong for us and it can then be looked for in people who are not such a clear cut diagnosis.

This has been done for things like genetic channelopathies. The genes were found in patients with classic disease but now people can be tested for the gene and diagnosed even if they have less classic presentations.

Among the many problems I have with ME being called CFS is that lots of people suffer from chronic fatigue and they should have a name for their disease. It is horrible even without being ME.

 

[Grigor]

From what I can see, Jason is doing exactly that.

From Jason et al's paper, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4556426/ (my bolding),


Their PEM "items" are



I appreciate that itemising PEM is difficult, but they've made an awful attempt with that list, in my opinion, and subsequently it's no surprise that they think that SEID is as bad as Fukuda - I think they are wrong, and setting the bar so low seems very strange to me.

I'm a bit too ill to search but what does the IOM say about PEM in terms of symptoms?

I'm shocked by Jason et al's list.

 

[Hoopoe]

I'm a bit too ill to search but what does the IOM say about PEM in terms of symptoms?

https://www.nap.edu/read/19012/chapter/6#78

 

[Grigor]

https://www.nap.edu/read/19012/chapter/6#78

Thank you. Wow!!!

 

[Barry]

https://www.nap.edu/read/19012/chapter/6#78

However, ME/CFS should not be considered merely a point on the fatigue spectrum or as being simply about fatigue. Experienced clinicians and researchers, as well as patients and their supporters, have emphasized for years that this complex illness presentation entails much more than the chronic presence of fatigue.

 

[Mij]

I think the notion of delay - or not - needs very careful consideration. My wife is mild/moderate, and on good days can do fairly low power activities for quite a long'ish period of time, until she then eventually has to stop. It may not then be too long after that that she starts to feel bad. But even though it can happen soon after she finishes, who is to say it is not a delayed consequence of what she was doing when she started?

My personal experience with PEM is that the delayed physiological processes occurs after I go over my limit, but the immediate PEM occurs when my immune system is reacting by an added trigger, allergen etc but it's not as serve. Sometimes (not often) it's difficult to tell because the overdoing triggered an immune response from something that was already brewing up, and I shouldn't have exerted myself at all that day. It's tricky.

 

[Mij]

@Invisible Woman only people with ME understand this

 

[Invisible Woman]

It changed for me over time.

When first ill I would suffer PEM immediately - extreme shakes, weakness, dizziness, needing to lie down asap, and so on.

As I deteriorated from moderate to severe & I am not capable of overexertion to the same degree the delay of up to 3 days became clearer.

I think how I was managing the condition due to knowledge, or lack of it in the early years, is a part of that.

 

[Ravn]

The way even experts don't seem to know what we get is infuriating. Listen to us!

Listen to us! Couldn't agree more. Yet I suspect they genuinely believe they are listening to us. I recall Jason seeking feedback from the wider patient community - and that could be part pf the problem. There will be an awful lot of patients who look at his 'PEM' list and say "Yes, I have that. Great list. Thanks for all your good work." And the researchers will go away thinking they've done a good job. Except that in the case of Jason that excuse doesn't stack up. I submitted lengthy feedback (on a previous PEM study) that reflected much of the critique in this thread. Either it was never read or they chose to ignore it.

"Listen to us" may need to be rephrased as "Listen to us on S4ME".

Their PEM "items" are

Post-exertional malaise
 Dead, heavy feeling after starting to exercise
 Next-day soreness after non-strenuous activities
 Mentally tired after slightest effort
 Minimum exercise makes you tired
 Physically drained / sick after mild activity

I appreciate that itemising PEM is difficult, but they've made an awful attempt with that list, in my opinion, and subsequently it's no surprise that they think that SEID is as bad as Fukuda - I think they are wrong, and setting the bar so low seems very strange to me.

This 'PEM' list is a bit like asking people if they ever have a headache and nausea together and, if the answer is yes, conclude that they must have migraines.

 

[CarolB]

In the U.K. the dominant name in official establishment nhs circles is more Chronic Fatigue Syndrome alone I feel. Certainly I’ve never met a dr who uses MECFS or the more common CFSme in the uk. My GPs usually call my illness Chronic Fatigue Syndrome or even chronic fatigue. I imagine medical schools who teach it are only using Chronic Fatigue Syndrome and We do have to factor in how much this advantages the MUS lot and consider how tarnished = deterring in countries where the bps narrative dominated, “CFS” is. More so than in America, I’ve always wondered how Ron Davis could bear to use the name when it’ seems so inappropriate but in his circles Chronic Fatigue Syndrome is less belittling.

if the choice was in the UK , this status quo or a move to systemic exertion intolerance disease, I’d take SEID. I don’t think there Is much appetite for more discussion on name and criteria though after it all being bungled for so long.

I know other people have said the same, about ME not being used by the medical profession in the U.K., but I have to say this isn’t my experience. My GPs call it ME, it says ME on my medical notes and Consultants from all specialties use ME when talking to me and corresponding with my GP. Am I the only one?

 

[Dolphin]

One unwitting consequence of the IOM criteria, which excludes few other illnesses, is the broadening of the number of individuals who are diagnosed and included in research studies.

This may be true if the criteria are used literally, but the lack of exclusions was designed with clinical practice in mind so that people wouldn't end up not being diagnosed because they had another condition; with research cohorts, I expect most, if not nearly all research groups would add on exclusions. They could use similar exclusion lists to those used with other ME/ME/CFS and CFS criteria.

 

[Dolphin]

When the new name was announced, patient reactions were rather mixed. For example, in a New York Times article on the IOM report, Tuller [10] mentioned that according to Jason, this name was not vetted by the patients, and patients would be dissatisfied with the selected name. In Jason’s blog [11] regarding this name change, some of the patient comments included: ‘I find it highly offensive and misleading.’ ‘It is pathetic, degrading, and demeaning.’ ‘It is the equivalent of calling Parkinson’s Disease: Systemic Shaking Intolerance Disease.’ ‘(It) is a clear invitation to the prejudiced and ignorant to assume ‘wimps’ and ‘lazy bums.’’ Certainly, some patients did feel that this term accurately captured post-exertional malaise, which is a cardinal symptom of this illness, but patient polls indicated that those patients were in the minority.

They say that patient reactions were mixed, but only give examples of negative responses; they don't give any positive responses. I recall that quite a number were mentioned in the discussion forum discussing it here:
https://forums.phoenixrising.me/forums/institute-of-medicine-iom-government-contract.114/

 

[Dolphin]

Chu et al.’s [22] study first screened individuals for the Fukuda criteria with many of its exclusionary criteria. However, the SEID criteria does not have these exclusionary rules. So, the Chu et al.’s sample had already been screened and therefore was a reduced sample without exclusionary illnesses. By using this screened sample, Chu et al.’s research evaluated the SEID criteria without its most significant limitation that being patients with exclusionary illnesses could be inadvertently brought into research ME/CFS studies. Using this biased sample, we disagree with Chu et al.’s conclusion that the SEID criteria generally identifies similar patients as other existing case definition criteria. Even with this significant limitation of using a prescreened sample without exclusionary illnesses, when Chu et al.’s sample was examined, with the severity and frequency criteria that we feel was required by the CCC and ME-ICC, 72% met SEID criteria whereas only 56% met CCC criteria and 45% met ME/ICC criteria. So, in this somewhat biased sample that had already been narrowed by exclusionary criteria, there is a relatively large difference between the number of patients who meet the CCC and ME-ICC criteria and the larger group selected by the IOM criteria. Regarding another issue in their study, only 38% of their sample met all four case definitions, thus again highlighting the variability in criteria and the importance of developing a consensus on one case definition.

As I recall in their commentary, Jason et al decided that the 2/2 frequency and severity thresholds should be required for this CCC and ICC criteria. Not everyone would say should thresholds are required for the CCC and ICC criteria. Also it is not necessarily the end of the world if a set of criteria allow a larger group than the CCC and ICC criteria, though it could be if misdiagnosed people were included, but I don't think has been proven.

 

[Dolphin]

The possibility that the IOM criteria will include a more heterogeneous and broad category was confirmed in a study by Jason, Sunnquist, Kot, and Brown [30]. They found that a high percentage of individuals with other medical illnesses fulfilled the new IOM criteria; therefore, many individuals with autoimmune and other health conditions who had previously been excluded from meeting case definitions would now be classified as having this illness. Due to the inclusion of formerly excluded illnesses, the IOM criteria increased prevalence rates by 2.8 times, as 47% of those with Melancholic Depression met the IOM criteria, and 48% with a clear medical illness (e.g. multiple sclerosis) that caused their fatigue also met the IOM criteria [30].

This study seems to have some important limitations

As the authors themselves say:

“The new SEID [1] criteria suggest frequency and severity ratings, many of which were not available from the data sets reported in the current study, so it is possible that some occurrence ratings selected less impaired individuals and inflated the number of patients meeting SEID criteria.”

As I recall, the 2/2 severity and frequency threshold were not used for the 3 of the 4 elements of the paper that are referenced above.

The paper was also criticised by a team led by one of the IOM authors:

However, we would advise caution with this interpretation as the lower number of items and less distinctive symptoms used to represent PEM in Jason’s study do not reflect the SEID description of PEM. Furthermore, diagnosis of the medical conditions used for comparison were likely not based solely on patient report of symptoms but also through confirmatory testing and response to treatment.

Chu L, Norris JL, Valencia IJ, Montoya JG. Patients diagnosed with Myalgic encephalomyelitis/chronic fatigue syndrome also fit systemic exertion intolerance disease criteria. Fatigue: Biomedicine, Health & Behavior. 2017;5:114–128.

Also, as I believe was alluded to earlier in the thread, the definition of postexertional malaise used by Jason et al. is far from perfect. The questionnaire used was also designed for the publication of the Institute of Medicine report, so doesn't necessarily represent the definition presented for postexertional malaise in the report.

 

[Dolphin]

Leonard Jason himself found that the Fukuda et al criteria if just assessed on paper without exclusions could lead to some people with Multiple Sclerosis and most people with Lupus to be diagnosed with CFS

Original Article
A Screening Instrument for Chronic Fatigue Syndrome
Reliability and Validity
Leonard A. Jason,Michael T. Ropacki,Nicole B. Santoro,Judith A. Richman,Wendy Heatherly,Renee Taylor, show all
Pages 39-59 | Published online: 04 Dec 2011

• https://doi.org/10.1300/J092v03n01_04

Abstract
Because estimates of the prevalence of Chronic Fatigue Syndrome (CFS) have been quite variable, there is a need for a screening instrument and second stage medical assessment that will produce the most valid estimate of the CFS prevalence. In the present study, four groups of 15 subjects each were recruited: patients diagnosed with (1) CFS, (2) Lupus, (3) Multiple Sclerosis (MS), and (4) a healthy control group. Participants were interviewed twice over a two week period of time with a screening instrument comprising The Fatigue Scale and a newly configured section. The screening instrument had excellent test-retest and interrater reliability. This screening instrument therefore has utility for CFS community-based epidemiologic research. However, while the instrument differentiates patients with CFS from those who are healthy, it is less likely to distinguish CFS from other autoimmune diseases (especially Lupus). Thus, future community-based CFS prevalence studies should encompass both a screening and a medical examination to adequately differentiate CFS from other illnesses with overlapping symptomatology. We recommend a two-stage research design with (1) a screening instrument with good sensitivity and (2) medical assessments of CFS positives from stage 1 to deal with the specificity problem.

Jason, L.A., Ropacki, M.T., Santoro, N.B., Richman, J.A., Heatherly, W., Taylor, R.R., Ferrari, J.R., Haney-Davis, T.M., Rademaker, A., Dupuis, J., Golding, J., Plioplys, A.V., & Plioplys, S. (1997). A screening instrument for Chronic Fatigue Syndrome: Reliability and validity. Journal of Chronic Fatigue Syndrome, 3, 39-59. doi: 10.1300/J092v03n01_04

Using the Fukada et al. (8) definition of CFS, as determined by our trained interviewers, all 15 people in the CFS group met the criteria for CFS, whereas none of the individuals in the healthy Lupus or MS groups met the screening criteria. In other words, the Fukada et al. (8) definition as determined by the trained interviewers had 100% sensitivity, 100% specificity, 100% agreement, and a kappa of 1.0. Because the subjects in the Lupus and MS groups indicated they had exclusionary medical illnesses, none of them would have met the CFS definition. However, if the subjects had not known they had exclusionary illnesses, then the screening instrument would have identified eleven in the Lupus and four in the MS group as having CFS. Therefore, the screening instrument would have had 100% sensitivity, 67% specificity, 75% agreement, and a kappa of 0.5.

 

[Dolphin]

A 2019 study by the Leonard Jason team themselves found that more healthy controls were picked up by satisfying both the Fukuda et al and the Canadian criteria that the IOM criteria:

https://www.s4me.info/threads/scart...al-reduction-in-functioning.8879/#post-256301