• 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, 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.

Unger et al: Multi-Site Clinical Assessment of ME/CFS (MCAM)

mango

mango

Senior Member
Messages
905
Multi-Site Clinical Assessment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MCAM): Design and Implementation of a Prospective/Retrospective Rolling Cohort Study

Unger ER, Lin JS, Tian H, Natelson BH, Lange G, Vu D, Blate M, Klimas NG, Balbin EG, Bateman L, Allen A, Lapp CW, Springs W, Kogelnik AM, Phan CC, Danver J, Podell RN, Fitzpatrick T, Peterson DL, Gottschalk CG, Rajeevan MS; MCAM Study Group.

Am J Epidemiol. 2017 Mar 17:1-10. doi: 10.1093/aje/kwx029. [Epub ahead of print]

Abstract
In the Multi-Site Clinical Assessment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MCAM), we relied on expert clinician diagnoses to enroll patients from 7 specialty clinics in the United States in order to perform a systematic collection of data on measures of myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS). Healthy persons and those with other illnesses that share some features with ME/CFS were enrolled in comparison groups. The major objectives were to: 1) use standardized questionnaires to measure illness domains of ME/CFS and to evaluate patient heterogeneity overall and between clinics; 2) describe the course of illness, identify the measures that best correlate with meaningful clinical differences, and assess the performances of questionnaires as patient/person-reported outcome measures; 3) describe prescribed medications, orders for laboratory and other tests, and management tools used by expert clinicians to care for persons with ME/CFS; 4) collect biospecimens for future hypothesis testing and for evaluation of morning cortisol profiles; and 5) identify measures that best distinguish persons with ME/CFS from those in the comparison groups and detect subgroups of persons with ME/CFS who may have different underlying causes. Enrollment began in 2012 and is planned to continue in multiple stages through 2017. We present the MCAM methods in detail, along with an initial description of the 471 patients with ME/CFS who were enrolled in stage 1.

KEYWORDS:
chronic fatigue syndrome; myalgic encephalomyelitis; patient-reported outcome measures; study methods
https://www.ncbi.nlm.nih.gov/pubmed/28338983
https://www.ncbi.nlm.nih.gov/pubmed/28338983

https://academic.oup.com/aje/articl...Assessment-of-Myalgic?redirectedFrom=fulltext
 
K

Keith Geraghty

Senior Member
Messages
491
first look - the mean age was around 50 and a lot of the patients were above 50, not all, and a lot of them had college education - I suspect we might be seeing highly educated insured White folk with a bias towards those able and willing to push to get into specialist clinics in the US - because Jason had a study showing female immigrants to have high rates of CFS, perhaps these patients arent captured here - but hey ho no study can capture everyone

still loads of interesting data - I shall read on
 
Last edited:
K

Keith Geraghty

Senior Member
Messages
491
m_kwx029f02.png


whats interesting about this figure is
1. just how bad pts are on physical function
2. that the gap between mental health issues and the general population is the least - see black bar line thats data on healthy controls and then see diamond thats mean value for pts with CFS - this refutes this idea that CFS is a mental health illness or that pts with CFS have strong mental health (conversion disorder) problems
3 - now compare gap with social function - pts with CFS clearly far far off healthy people

such an interesting chart
 
C

Chrisb

Senior Member
Messages
1,051
I am trying to understand the mentality which would, in PF2, equate moving a table with playing golf. One activity taking place in one' s own home and taking perhaps 30 seconds; the other probably involving driving some distance to undertake a walk of 3 to 4 miles and taking, perhaps 4 hours.

In SF1 they also fail to consider that "normal" social activities may be unaffected on the grounds that hardly any such interaction takes place.
 
T

Tom Kindlon

Senior Member
Messages
1,734
https://twitter.com/i/web/status/855525016909348865
Percentages of patients with specific symptoms (based on the CDC Symptom Inventory for chronic fatigue syndrome) in stage 1, Multi-Site Clinical Assessment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2012–2013. The CDC Symptom Inventory asks about symptoms experienced in the past month. Symptoms that have been present for less than 6 months were assigned a score of 0 and were not included. A frequency of 1 indicates a little of the time, and a frequency of 2 indicates some of the time. A severity of 1 indicates very mild or mild, and a severity of 2.5 indicates moderate. The black bars indicate the percentages of patients who reported the specified symptom with both frequency and severity of 2 or greater. The gray bars indicate the percentages of patients reporting that symptom with frequency and severity of 1 or greater. Symptoms are listed by increasing percentages of patients who reported symptoms with a frequency and a severity of at least 2.
Click to expand...
Unger 2017.png
 
Murph

Murph

:)
Messages
1,799
I like the way this study is shaping up. Good big sample size. It will be very positive when they do more of the analysis and try to match biological markers with the symptoms.

Their stated goal #5 is particularly exciting:

Identify measures that best distinguish persons with ME/CFS from those in the comparison groups and determine subgroups of persons who have ME/CFS with different underlying causes.

But from looking at the graphics I have a question: The boxplot's whiskers go to the extremes of the data. And yet the circles are outliers? How does that work? why are the outliers not the extremes?!
 
H

HowToEscape?

Senior Member
Messages
626
Keith Geraghty said:
m_kwx029f02.png


whats interesting about this figure is
1. just how bad pts are on physical function
2. that the gap between mental health issues and the general population is the least - see black bar line thats data on healthy controls and then see diamond thats mean value for pts with CFS - this refutes this idea that CFS is a mental health illness or that pts with CFS have strong mental health (conversion disorder) problems
3 - now compare gap with social function - pts with CFS clearly far far off healthy people

such an interesting chart
Click to expand...

Yeah but after enough social isolation nearly all ppl will have cognitive decline & other issues. Isolate a monkey and it's health declines sharply.
 
anciendaze

anciendaze

Senior Member
Messages
1,841
There is a question in my mind raised by a question I have recently been asked concerning a heart condition known as Patent Foramen Ovale (PFO). Autopsies have long shown that over 25% of the population has this abnormality from birth. Asking what percentage of patients with another condition have a PFO runs into circular reasoning: the tests on living patients are difficult, expensive and present some risk, so doctors only test for this condition after a patient presents with stroke, heart attack, a serious TIA or paradoxical embolism. Such patients with known PFO would be excluded from a cohort for ME/CFS. This doesn't change the percentage of the general population with undetected PFO. We have to expect significant numbers in a cohort for ME/CFS, but with present data I see no way of even estimating the percentage.

Because of the connection with exercise intolerance, migraines and episodic cerebral hypoperfusion, particularly while upright, this seems to be a very good question to consider, assuming you want to find a physiological cause of the disease. A casual review which I would not count as a meta-analysis suggests those running this and similar studies don't even want to know if undetected PFO is over-represented in the cohorts they assemble.

I'm open to any suggestions on how one might answer this question that do not rely on circular reasoning to exclude the answer a priori.
 
You must log in or register to reply here.