• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

Are Myalgic Encephalomyelitis and chronic fatigue syndrome different illnesses? (Jason)

jimells

Senior Member
Messages
2,009
Location
northern Maine
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4125561/

J Health Psychol. Author manuscript; available in PMC 2015 Aug 7.

Published before final editing as:
J Health Psychol. : 10.1177/1359105313520335.
Published online 2014 Feb 7. doi: 10.1177/1359105313520335
PMCID: PMC4125561
NIHMSID: NIHMS548953

Are Myalgic Encephalomyelitis and chronic fatigue syndrome different illnesses? A preliminary analysis
Leonard A Jason,1 Madison Sunnquist,1 Abigail Brown,1 Meredyth Evans,1 and Julia L Newton2
Author information ► Copyright and License information ►

The publisher's version of this article, before final editing, is available at J Health Psychol

Abstract
Considerable discussion has transpired regarding whether chronic fatigue syndrome is a distinct illness from Myalgic Encephalomyelitis. A prior study contrasted the Myalgic Encephalomyelitis International Consensus Criteria (ME-ICC; Carruthers et al., 2011) with the Fukuda et al. (1994) CFS criteria and found that the ME-ICC identified a subset of patients with greater functional impairment and physical, mental, and cognitive problems than the larger group who met Fukuda et al. (1994) criteria (Brown et al., 2013). The current study analyzed two discrete data sets and found that the ME-ICC identified more impaired individuals with more severe symptomatology.

Is this a new version of a 2014 study? I don't understand what the reference to different versions might mean.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
Basically they are repeating an earlier study using better methodology.

The present study used a new instrument that better assessed ME-ICC symptoms and examined two groups of participants who were recruited using different case ascertainment methods to reduce selection bias. We hypothesized that the ME-ICC would identify a more impaired, symptomatic group than the Fukuda et al. criteria.


One group is patients referred to Julia Newton's clinic and the other group is self-identified ME patients. It seems like an interesting approach.

These two case ascertainment methods represent varied methods of patient recruitment that are currently used in studies of this illness.

Using the Fukuda et al. (1994) CFS case definition, 96.3% met criteria in the DePaul sample and 86.5% in the Newcastle sample. However, when using the Carruthers et al. (2011) ME-ICC case definition, only 57.1% met criteria in the DePaul sample and 58.3% in the Newcastle sample. These consistent findings suggest that about 60% of patients meet the ME-ICC case definition, whereas the Fukuda et al. criteria identify a larger group of patients.

So the ME criteria has much better consistentcy across disparate groups of patients than Fukuda. That seems significant to me (although I'm not qualified to judge). I'm guessing it means that studies using ICC criteria are going to be more reproducible - is that correct?

Based on the present analyses, the ME-ICC (Carruthers et al., 2011) appear to a select a more functionally impaired and symptomatic group of individuals when compared to those who met only the Fukuda et al. (1994) criteria. Given the high level of interest among clinicians and scientists regarding the ME-ICC, more research should be conducted to investigate how these criteria, as well as the specific instruments developed to assess these criteria, potentially select different patient cohorts than the Fukuda et al. criteria.

:thumbsup:
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I don't think we know if ME is one disease. CFS is obviously a hodge podge definition, including whatever diseases lie behind ME.

The issue for research is to focus on specific highly defined subgroups. Those with clear neurological symptoms and are fully dependent on support, for example. Such patients should produce better results.

Otherwise this is about criteria. A well funded and designed study could use ANY criteria, because you exhaustively subgroup as part of the study. We now have evidence that even if ME is one disease it still needs subgrouping.

The real issue is cheap and badly applied definitions, with inadequate studies. Some of this is about money. Some of this goes to bias or vested interests. Much of it goes to prejudice when trying to apply for grant money.

A properly conducted Fukuda study, with full testing and subgrouping, would be much much more difficult and expensive than a similar one on bedbound ME patients. Yet it could be done.

It isn't done though. The one that comes closest is the multi-site study, and even that has its limitations.

We need to focus less on names, and more on strict study definitions and patient cohorts. The cheapest way forward is, in my opinion, the most expensive on a per patient basis, but will give better results. That would be a study into CCC or ICC ME patients who are fully bedbound and dependent on support to survive. However there are ethical issues here, they are so very sick, and logistical ones. Any testing would have to come to them, aside from possibly things like MRI in which case the patient might be sedated and transported, at even more cost.

Chronic fatigue patients who are not particularly dysfunctional are low hanging fruit. Its the streetlight effect. They are looking in the easy place rather than looking in the place that will yield the best results. Heck, they might even find eight sets of keys, none of which are the right ones. (The streetlight is sometimes explained by an anecdote where someone was looking for their dropped car keys under a lamp post, rather than where they dropped them, because it was easier there.)

I wonder if Julia Newton's in vitro muscle testing could be developed into a test? That would be a muscle biopsy, but many of us could probably handle that better than a 2 day CPET. I have previously commented though that repeat metabolic testing should provide similar results to the 2 day CPET, and its something I would like to see examined.

The finding that the ICC is much more restrictive is a good thing if confounding diagnoses are properly excluded. It makes for a better research definition.

As far as clinical definitions go, SEID is likely to be more widely utilized to better effect than most. However it also has huge potential for misdiagnosis because most doctors are unlikely to properly apply the definition. Yet that probably occurs even in ICC. Most doctors will not read the supporting material, and so may ignore the issue that exertion intolerance is defined differently to exercise intolerance. They already seem widely ill informed - there are three tests that go back to the 1940s that show severe dysfunction, yet I am betting most doctors cannot name them. Further there might be another test on the way, from 1852. That still requires more validation though.

Jason might use the definitions accurately, but I am betting most doctors will not. So its hard to infer much about clinical practice. Its research usage that is more important. I think we need to pay attention to what he is saying with research in mind.
 

Roy S

former DC ME/CFS lobbyist
Messages
1,376
Location
Illinois, USA
Abstract
"Considerable discussion has transpired regarding whether chronic fatigue syndrome is a distinct illness from Myalgic Encephalomyelitis."
 
yes, agreed, you betcha, no doubt, affirmative, yup, certainly, aye, indubitably, granted, of course, exactly, amen, definitely, okay, roger, sure, unquestionably, right, undoubtably, assuredly, correct, naturally, indisputably, uh huh, yea, okeydokey, indeed, right on.
 
From the creator of the name "chronic fatigue syndrome" Steve Strauss (deceased) at the NIH to Keiji Fukuda at the CDC two decades ago:
 
"... I predict that fatigue itself will remain the subject of considerable interest, but the notion of a discrete form of fatiguing illness will evaporate. We would, then, be left with Chronic Fatigue that can be distinguished as Idiopathic or Secondary to an identifiable medical or psychiatric disorder. I consider this a desirable outcome. ..."
http://forums.phoenixrising.me/index.php?threads/nih-strauss-cdc-fukuda-iom-the-cfs-report.29470/
 

Dolphin

Senior Member
Messages
17,567
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4125561/



Is this a new version of a 2014 study? I don't understand what the reference to different versions might mean.
Publicly-funded US research often has to be made available on PubMed Central 12 months after publication. PubMed Central often format papers in their own standard format which is different to how it was laid out in the original journal.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
As far as clinical definitions go, SEID is likely to be more widely utilized to better effect than most. However it also has huge potential for misdiagnosis because most doctors are unlikely to properly apply the definition.

Yes, this is what goes through my mind when reading these criteria comparison studies. They tell us little about the way the criteria are actually applied in the field. Maybe they tell us what the best-case outcome would be in an ideal world.

But in that ideal world, we would already have effective treatments, or at least be well on our way...
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
Publicly-funded US research often has to be made available on PubMed Central 12 months after publication. PubMed Central often format papers in their own standard format which is different to how it was laid out in the original journal.

Now I understand. Thank you.
 

Chrisb

Senior Member
Messages
1,051
As a non scientist with a passing interest in philosophy, but a total inability to read it any longer, it always seems to me that there is a tendency to ask questions to which there is no answer. This question possibly conflates the "is" of identity, with the "is" of predication, with the "is" of existence. Until the question is posed correctly in a way that can be universally recognised and acknowledged confusion will reign.

"Have you stopped beating your wife?" and suchlike.

I shall have to dig out a book "The English Rock Garden" by Sampson Clay which contained the most useful critique of taxonomy I have encountered, dealing with the merits and demerits of lumping and splitting and how this was in no way a job for the scientist. Of course it may be that upon rereading it is nothing like I imagine it to be.