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"By J. Burmeister: Keep an Eye on Your Walitt: NIH Study Poses Dramatic Risk to Long-Term Disability

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Justin30

Senior Member
Messages
1,065
So if all these issues are of such great importance to us. Which they obviously are. The issues as stated:

- # of participants
- # of control groups
- the 3 Psychobablers

Then why haven't we continued over and over to contest these issues with factual evidence and cited studies?

The psychobabler issue is being dealt with by MEAction Petition. Is this enough what more can we do to contest this issue?

The 2 uncontested points by us, the ME community are the sample size and # of control groups.

We/I listened to Naths answers and if this is not sufficent then we should have the opportunity to showcase factual based evidence from areas of research where statistical issues have resulted in no further progress in an area, to then be picked up again and followed leading to an actionable solution or cause to a disease.

I feel the removal of the FMD was just done because that would showcase just how truely biased Walitt is.

We should be making a stink about the Lyme group and # of participants at this point in a relentless effort to have this changed.

I know we are supposedly "the partners" of the NIH but we as a community should have "Demands" that make it difficult for rebutal by NIH Study designers and people involved. Agreed?

I feel as though the facilitation and execution of getting our message across may be difficult as has been shown in the past. This I feel may require a united front by all ME organizations in the US and elsewhere.
 
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Justin30

Senior Member
Messages
1,065
@Sidereal @Jonathan Edwards @Valentijn all made several CLEAR points why are these not summarized buy one of our organizations?

one of the ones that hit home was subjecting these sick individuals to a battery of tests that could result in permanent crashes. An act of sorts based on to small a sample size and extra control groups to muddy the waters would be horendous. An inhumane act based on the IOM report and true CCC/ICC Criteria for a disease in which any forms of over exercion can mess you up....something good
 
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leela

Senior Member
Messages
3,290
Also, why don't they just trailblaze, and set the example for all future studies by using the expert-approved ICC criteria and no other? Why dick around with multiple criteria?

And asymptomatic or not, Lyme is another ill-defined, poorly-testable, relapsing and remitting condition, with which many ME patients are comorbid. This is supposed to be the first, real, serious study about Myalgic Encephalomyelitis. So get real and serious already! Compare clearly defined ME patients to healthy controls, and then after that reveals what it reveals, start comparing us to other patient populations.
 
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jamie

Messages
47
We could start a thread with a basic starting point of problem areas/suggestions and have people refine and contribute editing the first post until we can make it coherent and then write it up ourselves as one of the main patient communities.

If nothing else it would be an organizing tool for future reference. I would say include the expert clinician problem even though it's already been on a petition to make it complete.
 
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Justin30

Senior Member
Messages
1,065
I am all for this do want to start it up so we can start getting some contributions from other members.

@Sushi are we able to organize a thread in such a way as per the forum rules with regards to @jamie s prior post?
 
Sushi

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Justin30 said:
@Sushi are we able to organize a thread in such a way as per the forum rules with regards to @jamie s prior post?
Click to expand...
It sounds like jamie was suggesting starting another thread to work identifying problems areas and making suggestions? I'm not sure how forum rules would be involved.
 
J

jamie

Messages
47
Yeah, I have no idea if what I described as far as continually changing a first post works or if there is a better way or a clearer idea of a purpose. I am definitely not the one you want to start or manage anything. My brain barely functions enough to put together sentences. so I have no claim on the idea, just an idea. So when I said "We" could start a thread I guess I should have said "Y'all" :) If someone wants to start a thread go for it.

I would do my best to contribute anything I could though I am not anywhere close to being as informed or articulate as others here. So many great points have been made in different threads at least bringing them together might get something going that could be useful to the community,
 
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Justin30

Senior Member
Messages
1,065
Sushi said:
It sounds like jamie was suggesting starting another thread to work identifying problems areas and making suggestions? I'm not sure how forum rules would be involved.
Click to expand...

I guess my concern was if we were to create a document/list/letter to be sent off too one of our ME/CFS Organizations.

@jamie, is this along the lines of what you were thinking about?

If all sounds good let me think about it for a day cause I have been feely pretty blah and I'll start something.

Thank
 
Keela Too

Keela Too

Sally Burch
Messages
900
Location
N.Ireland
One small point on the controls. I keep hearing it said that 20 + 20 controls would be better than only 20 controls.

So why not 40 healthy controls and 40 ME patients?
Same overall numbers of subjects in the study, but the control group isn't muddied by splitting it into two separate types of control.
 
J

jamie

Messages
47
Justin30 said:
I guess my concern was if we were to create a document/list/letter to be sent off too one of our ME/CFS Organizations.

@jamie, is this along the lines of what you were thinking about?

If all sounds good let me think about it for a day cause I have been feely pretty blah and I'll start something.

Thank
Click to expand...
Sorry for late reply, bean dead. But yes That's what I meant but even if the PR community does't want to put whatever comes from it out in any official way, any individual could use the information provided to do with what they want, I think? IDK how it works here
 
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