• 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.

Racaniello's podcast: Trial by Error, with David Tuller

JoanDublin

JoanDublin

Senior Member
Messages
369
Location
Dublin, Ireland
Sasha said:
I've just listened to this and it's terrific - some interesting updates on what's happening, too.

Please leave them a comment to thank them, if you haven't already (I made one but it's held in moderation).
Click to expand...

I left a very supportive comment that was in moderation the other day. I checked back and the comment didnt get posted. Wonder why?
 
S

Sasha

Fine, thank you
Messages
17,863
Location
UK
JoanDublin said:
I left a very supportive comment that was in moderation the other day. I checked back and the comment didnt get posted. Wonder why?
Click to expand...

My comment was in moderation for several days (but I could still see it, marked as being in moderation).
 
JoanDublin

JoanDublin

Senior Member
Messages
369
Location
Dublin, Ireland
Sasha said:
My comment was in moderation for several days (but I could still see it, marked as being in moderation).
Click to expand...
Sasha said:
My comment was in moderation for several days (but I could still see it, marked as being in moderation).
Click to expand...


Aha! It's there now. Must have been a glip or something cos I could see it in moderation for about a day and then it just disappeared for several days but it's now posted :)
 
T

Tom Kindlon

Senior Member
Messages
1,734
alex3619 said:
Special mention goes to other advocates who have helped, David discusses their contribution toward the end. Everyone who has helped this along the way deserves a round of applause, especially @Tom Kindlon
Click to expand...
Thanks.

It would have been good if more people had been mentioned as lots of people have made significant contributions over the years.

One person who at the moment stands out for me is Alem Matthees based on the files that have been released from the Freedom of Information tribunal case
https://valerieeliotsmith.files.wordpress.com/2016/04/010-090216-r2-matthees_main_response.pdf and the files at: https://www.whatdotheyknow.com/search/matthees/all . An amazing effort.

He also had a commentary published in 2014:

Qual Life Res. 2015 Apr;24(4):905-7. doi: 10.1007/s11136-014-0819-0. Epub 2014 Oct 11.
Assessment of recovery status in chronic fatigue syndrome using normative data.
Matthees A1.

Abstract
INTRODUCTION:
Adamowicz et al. have reviewed criteria previously employed to define recovery in chronic fatigue syndrome (CFS). They suggested such criteria have generally lacked stringency and consistency between studies and recommended future research should require "normalization of symptoms and functioning".

METHODS:
Options regarding how "normalization of symptoms and functioning" might be operationalized for CFS cohorts are explored.

RESULTS:
A diagnosis of CFS excludes many chronic disabling illnesses present in the general population, and CFS cohorts can almost exclusively consist of people of working age; therefore, it is suggested that thresholds for recovery should not be based on population samples which include a significant proportion of sick, disabled or elderly individuals. It is highlighted how a widely used measure in CFS research, the SF-36 physical function subscale, is not normally distributed. This is discussed in relation to how recovery was defined for a large intervention trial, the PACE trial, using a method that assumes a normal distribution. Summary data on population samples are also given, and alternative methods to assess recovery are proposed.

CONCLUSIONS:
The "normalization of symptoms and function" holds promise as a means of defining recovery from CFS at the current time. However, care is required regarding how such requirements are operationalized, otherwise recovery rates may be overstated, and perpetuate the confusion and controversy noted by Adamowicz et al.

Comment on
Click to expand...
 
You must log in or register to reply here.