• 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 become a member, simply click the Register button at the top right.

CDC study - A pilot registry of unexplained fatiguing illnesses and chronic fatigue syndrome

Bob

Senior Member
Messages
16,455
Location
England (south coast)
A pilot registry of unexplained fatiguing illnesses and chronic fatigue syndrome

Dana J Brimmer, Elizabeth Maloney, Rebecca Devlin, James F Jones, Roumiana Boneva, Caryn Nagler, Lisa LeRoy,Scott Royal, Hao Tian, Jin-Mann S Lin, Jennifer Kasten and Elizabeth R Unger

doi:10.1186/1756-0500-6-309
BMC Research Notes 2013, 6:309
Published: 2 August 2013

Provisional Abstract:
http://www.biomedcentral.com/1756-0500/6/309/abstract
Provisional full article PDF:
http://www.biomedcentral.com/content/pdf/1756-0500-6-309.pdf

Extract from the abstract (results):
We registered 827 healthcare providers. Forty-two providers referred 88 patients, and 58 patients (66%) completed clinical evaluation. Of the 188 CFS support group members, 53 were self-referred and 46 (87%) completed the clinical evaluation.
Of the 104 participants completing evaluation, 36% (n = 37) met the criteria for CFS, 17% (n = 18) had insufficient fatigue or symptoms (ISF), and 47% (n = 49) were found to have exclusionary medical or psychiatric illnesses.
 

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
This is kind of interesting, but I find it very odd that they only used Fukuda criteria; I'm not sure when the fieldwork was carried out but it seems bizarre not to have included the Canadian Consensus Criteria as well. Can't be operationalised? Lipkin et al managed it for their XMRV study (and ongoing pathogen study). Interesting too that many of those with a prior CFS diagnosis were likely to not meet the case definiton.
 

biophile

Places I'd rather be.
Messages
8,977
General findings were typical of similar studies: lots of people presumed to have CFS do not in fact meet the criteria and/or are excluded because of a medical or psychiatric diagnosis.

The below finding would be an interesting twist on the claim that support groups are a "risk" (associated with but often implied as the cause of, despite the evidence not supporting causal inferences) with poorer responses to CBT/GET:

Sixty-five percent of provider-referred patients had CFS compared to 35% of support group referrals. [...] More revealing was the proportion (59%) of exclusions found in the support group as compared to the provider referred group. In fact, 63% of the support group patients evaluated (29/46) had an exclusionary condition identified. Despite awareness of their illness (as evidenced by membership in support group), the self-referral group had undetected medical conditions, and some patients experienced more than one exclusionary condition. For example, this group had seven cases of diabetes compared to one in the provider referral group, and seven cases of hypothyroidism compared to three in the provider group. In both groups, many of the exclusionary conditions were detected on the screening laboratory tests and are treatable.

CBT/GET studies are supposed to be doing such tests though, right? Oh wait, many do not even use the CDC criteria, let alone something like the CCC. If PACE can "operationalize" the Oxford criteria by slapping on a few questionnaires, why cannot something be done for the CCC? Jason et al even published some suggestions in 2009.

It is also obvious that those in support groups could be more ill, something which is indirectly indicated in this paper:

The main reason for not meeting CFS criteria was exclusionary conditions as opposed to being classified as ISF. A higher proportion of provider-referred patients (78%) were classified as ISF as compared to support group patients (22%).
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
For example, this group had seven cases of diabetes compared to one in the provider referral group, and seven cases of hypothyroidism compared to three in the provider group.
The fact that someone has diabetes or hypothyroidism does not mean that they cannot also have CFS. I know from personal experience. My ME/CFS did not go away when I developed hypothyroidism.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
In all respects. None of my ME/CFS symptoms have gone away since I became hypothyroid.
 

biophile

Places I'd rather be.
Messages
8,977
Brimmer et al said:
For example, this group had seven cases of diabetes compared to one in the provider referral group, and seven cases of hypothyroidism compared to three in the provider group. In both groups, many of the exclusionary conditions were detected on the screening laboratory tests and are treatable.

The fact that someone has diabetes or hypothyroidism does not mean that they cannot also have CFS. I know from personal experience. My ME/CFS did not go away when I developed hypothyroidism.

Yes, good point. Table 1 has the "Exclusion Referral Criteria"*, which included:

• Insulin-dependent diabetes.
Uncontrolled diabetes type II (HgbA1c <9%).
Uncontrolled hypo- or hyper-thyroidism.
(* "The registry inclusion/exclusion referral criteria are not for CFS classification.")

Brimmer et al said:
Of the 49 people classified as having an exclusionary condition, the five most common exclusionary conditions were hypothyroidism, diabetes, alcohol abuse, anemia, and high levels of C-reactive protein (see Table 6 for a complete list). [...]

After exclusionary conditions are fully treated, those patients otherwise meeting criteria for CFS would be managed in the same way as CFS.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
the Fukuda criteria was designed for research, which is why it's a little picky about exclusions (in some spots). In clinical practice, things should be handled differently. Clearly it's possible to have more than one disease, and in fact people do.

If you have diabetes or Lupus or Ehlers-Danlos syndrome it's somewhat likely you'll have complicating and even additional conditions, and there is no reason to expect things would be different than this for ME patients.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I wonder if one of the big reasons why there was so many other serious illnesses in the self refered ones from CFS support group, could be cause many doctors once someone is diagnosed with CFS, one then often gets poorer health care and less tests are done and symptoms often ignored so hence things like diabetes or hypothyriodism developing after CFS diagnoses could be missed.
 

Gijs

Senior Member
Messages
690
It is verry sad to see this type of research. It look to me as 20 years ago. There are now objective tests to move this disease forward. The CDC do not want move this disease forward. The CDC is a verry corrupt organisation.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
The fact that someone has diabetes or hypothyroidism does not mean that they cannot also have CFS. I know from personal experience. My ME/CFS did not go away when I developed hypothyroidism.

Same with me. I developed hypothyroidism a few years after getting ME. But it matters whether the hypothyroidism is treated or not. In other words, you can't be diagnosed with CFS/ME until hypothyroidism is treated, and thyroid levels are within normal range. Once treated, then you can get a CFS/ME diagnosis. This seems to be the case with this study, as per biophile's post, above.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Same with me. I developed hypothyroidism a few years after getting ME. But it matters whether the hypothyroidism is treated or not. In other words, you can't be diagnosed with CFS/ME until hypothyroidism is treated, and thyroid levels are within normal range. Once treated, then you can get a CFS/ME diagnosis. This seems to be the case with this study, as per biophile's post, above.

Interesting. I wonder then if 'misdiagnoses' (or 'alternate diagnoses') that have been reported in the past could be considered premature...

As you might have picked up - my sleep study determined on a brief assessment of the mass of data - that my brain cell was starved of oxygen and waking me up every few minutes to breathe. Now if I should be treated at night with, say, oxygen or indeed receive a diagnosis of chronic apnea...

Very difficult with ME determined in the way it is to say whether or not it has been resolved; or if indeed something like treating sleep with oxygen at night has been effective... Though like hypothriodism you'd test brain/oxygen levels in another sleep study I guess.

But then... 'unrefreshing sleep' and 'cognitive dysfunction' could all be helped by fixing oxygen deprivation at night.

My point here is - how the hell do we really know? :)
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
@ Kina sorry I am unable to edit my posts for some bizarre reason today. Very strange - like me :D

I meant to add 'And both of these symptoms are of course used to help diagnose ME.' To my second to last sentence.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
My point here is - how the hell do we really know? :)

You get the sleep apnea, or whatever it is, treated, and then see if you still have ME symptoms.
Unless I've misunderstood your question?


@ Kina sorry I am unable to edit my posts for some bizarre reason today. Very strange - like me :D

I meant to add 'And both of these symptoms are of course used to help diagnose ME.' To my second to last sentence.

Try a different browser as a temporary remedy. If the problem doesn't clear up soon, clear your browser cache. (It usually does the trick.)
 

readyforlife

Senior Member
Messages
137
I'm confused what this study is even trying to accomplish??? And If i'm reading correctly the study states "We registered 827 healthcare providers" Where are these 827 healthcare providers??? I live in Seattle and can't find one good cfs/me health care provider.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
Yes, good point. Table 1 has the "Exclusion Referral Criteria"*, which included:

• Insulin-dependent diabetes.
Uncontrolled diabetes type II (HgbA1c <9%).
Uncontrolled hypo- or hyper-thyroidism.
(* "The registry inclusion/exclusion referral criteria are not for CFS classification.")
I missed the fact that these exclusions were just for this study, not for CFS diagnosis. :sluggish: I can understand why they would not want subjects with additional illnesses in the study. Don’t a lot of people with ME/CFS have high C-reactive protein? I would expect these exclusions to once again skew the study participants to those who are less severely ill and/or have been ill for a relatively short time.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
I have to wonder what disease they think they are enrolling in this patient registry. Dr. Unger has stated that they previously thought CFS would be simple and they were now moving away from this idea, but it looks to me like they continue to make the same mistake.

Table 6
Exclusion conditions at clinical evaluation
a
Exclusion condition
Support group referral
Provider referral
(n = 29)
(n = 20)
Active inflammation 1 1
Alcohol abuse
4 –
Anemia
2 1
Anorexia bulimia
– 1
Autoimmune disorder 1 –
Bipolar
– 2
Cervical, thoracic, lumber spine disease – 1
Diabetes Type II/insulin resistance 7 1
Hepatitis C
1 –
High blood urea
2 –
High C-reactive protein (CRP)
a,b
5 5
Hypertension
1 –
Hypothyroidism
7 3
Major depressive disorder with melancholy 2 2
Mitochrondrial myopathy – 1
Obesity
2 –
Obstructive sleep apnea 1 1
Osteoarthritis
2 –
Narcolepsy
1 –
Restless leg syndrome 2 1
Rheumatoid arthritis 1 –
Sleep problems
1 –
Schizophrenia
1 –
Sickle cell
– 1
Substance abuse
– 3
Uncontrolled high blood pressure 1 –
Urinary tract infection 2 2
Total exclusion condition by group
47
26
a
Person could have more than one exclusion condition and the exclusion could
be based on one or multiple conditions.
b
All persons with high CRP were excluded for other coexisting medical conditions.
While a high CRP value is not an exclusion as defined in the 1994 case definition, we identified
persons with CRP values that were several fold higher than the upper limits of normal values,
as there may be an underlying inflammatory, infectious, or cardiovascular disease.

Autoimmune, inflammatory, infectious, and cardiovascular disease are actually leading hypotheses by the leading scientists in the field. Also sleep disorders, even apnea and narcolepsy, are expected. etc. Does CDC not read the literature?
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
Am I correct in understanding that these are people who were diagnoses with CFS, but were excluded from the study due to co-morbid conditions? If so I am surprised at the number with hypertension. I thought hypotension was more common.