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Time for the Big Talk. How's the CAA doing?

Dolphin

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Also, interesting articles at:
Unraveling Post-Exertional Malaise http://www.cfids.org/cfidslink/2010/060204.asp
Part 1: This article (from the June 2010 issue of CFIDSLink http://www.cfids.org/archives/2006-2010-cfidslink/june-2010.asp ) examines the definition of PEM and how CFS patients experience it.

- Cort has also been given permission to post it at: http://www.forums.aboutmecfs.org/sh...ost-Exertional-Malaise-by-Jennifer-Spotila-JD

Post-Exertional Malaise: Perception and Reality http://www.cfids.org/cfidslink/2010/080402.asp
Part 2: This article (from the August 2010 issue of CFIDSLink http://www.cfids.org/archives/2006-2010-cfidslink/august-2010.asp ) examines objective evidence of PEM and how it differs from fatigue in other illnesses.

Post-Exertional Malaise: Cause and Effect http://www.cfids.org/cfidslink/2010/080403.asp
Part 3: This article (from the August 2010 issue of CFIDSLink http://www.cfids.org/archives/2006-2010-cfidslink/august-2010.asp ) examines the topic of kinesiophobia and what mechanisms may cause PEM.


-relevant to a lot of the discussion in this thread
 

Mithriel

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The first article says
It is not clear who first coined the term or applied it to CFS. Early definitions of the illness do not use the phrase, but they do describe something like it.
It should have been said here that an abnormal response to exercise was always one of the defining characteristics of myalgic encephalomyelitis. Many people thought the Tahoe outbreak was ME. PEM did not come from nowhere.

An early mention is in the BMJ of October 1957 "An outbreak of encephalomyelitis in the Royal Free Hospital Group London in 1955, where they say

Rest proved the sheet anchor in management...... Attempts to reduce this rest period were always followed by a relapse. The evil effects of premature exertion, even a prolonged neurological examination, became apparent to all.
The great expert on ME Melvin Ramsay described an abnormal response to exercise as the cardinal symptom of ME.

One of the great harms done by the CDC when they invented CFS was to leave out this PEM from their definition.

Mithriel
 

justinreilly

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CAA response to CDC personality study?

repost from CDC personality study thread:

And the CAA's thoughts on all this would be????
That it's a load of crap and has nothing to do with CFS or CFS patients. Although the staff would phrase that much better than I did. And CBS hit the killing blow with the references to the 2003 study comparing CFS and MS.
Can CAA please write a brief critique of the study and post it to the website and send it to the journal and CDC? Any critique would of course include the most glaring fatal flaw- the invalid Reeves definition of "CFS" upon which the study is based.
 

V99

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I back Justin's request.

Right now these groups are trying to destroy ME/CFS research, they are tring to take it out of the game. The CAA needs to make it clear that this is unacceptable.
 

justinreilly

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repost from CDC personality study thread:

Can CAA please write a brief critique of the study and post it to the website and send it to the journal and CDC? Any critique would of course include the most glaring fatal flaw- the invalid Reeves definition of "CFS" upon which the study is based.
Guess not.

Jennie- Any reason for not doing this? I'm talking about a two paragraph or so letter if time is pressed.
 

justinreilly

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CAA must strike while the iron is hot and hammer away at the truth.

Now that ME is in the spotlight like never before, it is time for CAA to present the truth about how things are and how they must change to the media and the American people:

(1) ME/CFIDS is a devasting neuro-immune disease long known to be associated with retroviruses and (like AIDS) with extremely rare lymphomas. Calling ME 'chronic fatigue' is just like calling AIDS, MS or Leukemia 'chronic fatigue';
(2) We need monster funding increases;
(3) Five new human retroviruses are in the blood supply unchecked. (And the Band Played On part II must end now!) and
(5) NIH and CDC have been fighting a quarter century war on ME science and patients and this must stop NOW! (Tuskegee part II must end now).


CAA and the rest of us must be in contact with the media and hammer away at these points, imo.
 

V99

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I think the CAA needs to add that ME has been defined for much longer, and is the original name of this disease.
 

justinreilly

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CAA must stop echoing the fed govts disingenuous damage control

From "Another Turn of the Retrovirus Kaleidoscope"
By K. Kimberly McCleary
cfids.org

Teams already at work will need to test for virus variants to understand the potential role and mechanisms of a broader group of MLV-related viruses in CFS and other human diseases, as well as asymptomatic healthy controls. This includes other researchers attempting to optimize viral detection assays and those assessing the threat this group of viruses poses to the safety of the blood supply if proven to be transfusion-transmitted.
I would really like to see a stronger position on the 'new human retroviruses in the blood supply issue'. McCleary is here just regurgitating the extremely disingenuous position of FDA that it is uncertain if the MLVs in question are transmissible by blood. Even CDC admits that it is "assumed" that the MLVs are transmissible by blood.

We all know that FDA's position, repeated by McCleary, is disingenuous damage control.
We all know that they are transmissible by blood (and potentially by saliva, even aerosolized saliva) and that some retrovirus(es) (whether an MLV, DeFreitas RV or some as yet undiscovered or unrecognized rv(s)) are most probably significantly causative of ME/CFIDS.

CAA needs to be educating the public at this crucial juncture, not continuing to aid the federal government in misleading the public. This misleading of the public is at the core of our persecution. We will never get help unless the public is told the truth.
 

justinreilly

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Jennie,

When the issue of CEO compensation has been raised, you've told us that CAA's ($178,000) is at or less than comparable salaries for similarly situated non-profits. Here is some info from charitynavigator.com 2010 non-profit CEO salary survey.

For small charities (total expenses <$3.5 million) in the South the median CEO salary is $91,750 (n= 212 charities).

http://www.charitynavigator.org/__asset__/studies/2010_CEO_Compensation_Study_Revised_Final.pdf


For health charities in North Carolina focusing on a "disease, disorder or discipline" the average salary is $144,000 (n= 8). Keep in mind the average expenses for these charities was $24.5M while CAA's was about $1.2M.

http://www.charitynavigator.org/ind...r&cgid=5&cuid=13&rgid=8&stid=25&Submit=Submit

Sector Analysis Tool

Define the sector you would like to analyze:
Category: Health
Cause: Diseases, Disorders and Disciplines
Region: South
State: North Carolina

Category
Sector Average
(8 Charities)

Total Revenue
$24,221,637

Total Expenses
$24,452,951

CEO Salary
$144,603

Primary Revenue Growth
11.2%

Program Expense Growth
5.0%
 
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The study to watch is Dr. Paul Jolicoeur The University of Montreal, Canaida. The Canadians have the strictest criteria, if their numbers are even close to the WPI's numbers the CDC becomes illrelevant.
Hi George,
Sorry to say it is not so. Jolicoeur 's study is unilaterally ruling out XMRV after two large cohorts, and is still recruiting. He found only 1 positive out of the first 70. He is against the blood ban. Quebec's new guidelines are pro-psychiatric, sadly... We all got fooled, including patients groups.