• 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.

Patient Perceptions Regarding Possible Changes to the Name and Criteria for CFS - Leonard Jason

Nielk

Nielk

Senior Member
Messages
6,970
New study results by Dr. Leonard Jason

https://www.jscimedcentral.com/FamilyMedicine/familymedicine-3-1090.pdf

Abstract For decades, researchers and patients have been debating the terms and criteria for chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME). This has led to considerable difficulties in clearly communicating to the public the nature of these illnesses, and has produced considerable methodological challenges for researchers who study these illnesses. If different laboratories do not employ comparable criteria to select patients, this will have negative consequences for understanding epidemiology, etiology, diagnostic and treatment approaches. In part due to this ongoing controversy, the Institute of Medicine in 2015 recommended new criteria and a new name. The present study surveyed a relatively large sample of patients both in and outside the US to determine attitudes toward the primary names and criteria that have been used to characterize these patients. Assessing patient opinions is an activity that might help provide gatekeepers (i.e., federal officials, scientific and patient organizations) with valuable input for ultimately clarifying this debate regarding names and criteria.
Click to expand...
Entire report here
 
Nielk

Nielk

Senior Member
Messages
6,970
Interesting findings:

CONCLUSION The findings from this study are rather clear concerning the terms CFS and SEID. Only 22% of the US sample and 6% of the International sample liked or definitely liked the illness label CFS, whereas only 16% to 17% liked or definitely liked SEID. In other words, the majority of individuals were not in favor of either term, and this matches what has been previously found regarding the terms CFS [21,23] and SEID [20]. These findings indicate that it is of importance to find names that can gain greater approval from the patient community. Two other terms with slightly better approval ratings were ME/CFS (21% to 31%) and NDS (38%), but the latter term might have been less familiar to many respondents. Clearly, in this comparison of names, the most favorable attitudes were found for ME (65% to 68%), thus indicating that there appears to be the highest consensus for ME among the patient community, which is supported by scientific data suggesting that there are less negative attributions associated with this name [24,25].
Click to expand...
 
D

Dolphin

Senior Member
Messages
17,567
These are the main results:

Table 3: Opinion of current names.

Table 4: Opinions of current case definitions
 
T

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
68% I think is a very high rate considering that some who responded may only fit CFS definations and not ME ones so could well be against a change to ME name on that ground out of fear of possibly ending up with no name for their illness.

I think we have to keep on using the ME till we do win the battle to use this name till the time comes in which they know far more about our illness.

Dr. Leonard Jason is doing some great research which hopefully will end up really helping us. thanks
 
You must log in or register to reply here.