Watch CFSAC meeting online Monday 9-4 EST May 10

Dolphin

Senior Member
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That being said would you feel more comfortable if members would voluntarily stick to a maximum font size and what would be a size that would make you still feel comfortable?
I'm not sure there needs to be a maximum font size once people accept that it doesn't have to be in the rules for a moderator or anyone else to complain about how it is used in a particular instance. I don't think the rules should have to be as detailed as a country's constitution for example.

I'm see this as a constructive discussion also.
 
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well, I would like to get back to the original topic.

I went back and listened to the testimony again. And I think we have been a little unfair to Unger.

Now, it has been a couple of days since then, so let's see if I can remember why I say that.

First, she said they are re-examining the definition, focusing on what objective biological markers might be used instead of list of symptoms.

When asked about subgroups, under the the criteria, they are looking at it. "Stratification" she called it.

She admitted more cooperation with researchers is needed, even admitting they don't have some of the specialties that are needed.

And there is more, I just can't remember.

Tina
 

Dolphin

Senior Member
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well, I would like to get back to the original topic.

I went back and listened to the testimony again. And I think we have been a little unfair to Unger.

Now, it has been a couple of days since then, so let's see if I can remember why I say that.

First, she said they are re-examining the definition, focusing on what objective biological markers might be used instead of list of symptoms.

When asked about subgroups, under the the criteria, they are looking at it. "Stratification" she called it.

She admitted more cooperation with researchers is needed, even admitting they don't have some of the specialties that are needed.

And there is more, I just can't remember.

Tina
The thing is that the criteria are so bad, they shouldn't be used as a starting point.

Why should "I don't get much done because of my mood" (not exact quote) and that sort of statement count as showing a person has CFS-like symptoms and disability. It is just asking to include people who don't have the condition. The subgroups that have been found in previous studies using this definition are things like fat group/not fat group - the subsets don't tell you much about proper CFS.

So for example, if a person ticks yes for any of these questions, they qualify under the "role emotional" criteria (as disabled) (the underlining is in the questionnaire)
During the past 4 weeks, have you had any of the following problems with your work or other regular daily activities as a result of any emotional problems (such as feeling depressed or anxious)?
(circle one on each line)

a. Cut down on the amount of time you spent on work or other activities
Y 1 N 3

b. Accomplished less than you would like
Y 1 N 3

c. Didn't do work or other activities as carefully as usual
Y 1 N 3
Even if they tick, "No, not limited at all", to all of these questions (physical functioning subscale):

4. The following items are about activities you might do during a typical day. Does your health now limit you in these activities? If so, how much?
(check one on each line) ACTIVITIES

Yes, Limited A Lot

Yes, Limited A Little

No, Not Limited At All

a. Vigorous activities, such as running, lifting heavy objects, participating in strenuous sports
1
3
5

b. Moderate activities, such as moving a table, pushing a vacuum cleaner, bowling, or playing golf
1
3
5

c. Lifting or carrying groceries
1
3
5

d. Climbing several flights of stairs
1
3
5

e. Climbing one flight of stairs
1
3
5

f. Bending, kneeling, or stooping
1
3
5

g. Walking more than a mile
1
3
5

h. Walking several blocks
1
3
5

i. Walking one block
1
3
5

j. Bathing or dressing yourself
1
3
5
 

spindrift

Plays With Voodoo Dollies
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well, I would like to get back to the original topic.

I went back and listened to the testimony again. And I think we have been a little unfair to Unger.

Now, it has been a couple of days since then, so let's see if I can remember why I say that.

First, she said they are re-examining the definition, focusing on what objective biological markers might be used instead of list of symptoms.

When asked about subgroups, under the the criteria, they are looking at it. "Stratification" she called it.

She admitted more cooperation with researchers is needed, even admitting they don't have some of the specialties that are needed.

And there is more, I just can't remember.

Tina
Yes, I have been going way off topic. I will open a new thread.
 

justinreilly

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well, I would like to get back to the original topic.

I went back and listened to the testimony again. And I think we have been a little unfair to Unger.

Now, it has been a couple of days since then, so let's see if I can remember why I say that.

First, she said they are re-examining the definition, focusing on what objective biological markers might be used instead of list of symptoms.

When asked about subgroups, under the the criteria, they are looking at it. "Stratification" she called it.

She admitted more cooperation with researchers is needed, even admitting they don't have some of the specialties that are needed.

And there is more, I just can't remember.

Tina
I must agree with Tom that there is absolutely no excuse for Unger's continued support of Reeves criteria. Also indefensible is the fact that absolutely nothing about the "CFS" program itself has yet changed.
 
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Actually, I didn't catch her explicitly saying she supports the Reeve's criteria. From what I understood, she says they are looking at forming an objectively based criteria. So she must not be too attached to it.

What I heard her say was she was involved in forming the criteria because just asking about fatigue did not seem to include others that seemed to have the illness. (how they can know that these people have the illness, I don't know. Seems circular reasoning to me.)

What I heard her stand by, asked by Jason, is the figure. She stands by the figure. But they are looking at getting objective measures to define illness.

Now, correct me if I am wrong, folks, I just checked again, but the CFS diagnostic criteria put out by CDC now does not say anything about emotional problems. I know a different standard was used for research. And that is a crying shame. It is bad science, for sure.

But that should have no bearing on clinicians diagnosing CFS appropriately. On the CDC Web site, it says major depressive disorder has similar symptoms but is a different illness. "Diagnosis of any of these conditions would exclude a definition of CFS unless the condition has been treated and sufficiently and no longer explains the fatigue and other symptoms." (I know a certain internist, who shall remain nameless, who needs to read this.)

Don't get me wrong, I think CDC has lots of splainin to do. There is no logical reason why a private lab was able to find in two years what CDC should have found in over 20 years of research. But I don't know how much of that can be laid at Unger's feet. And maybe they are headed in the right direction now, although too slow, even in government time.

Tina
 

Cort

Phoenix Rising Founder
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Yeah, see that's a problem. All this talk about forum rules and the link at the bottom of each page does not even go to them. The bottom of the page is an outdated set of rules. The 'official' rules are in a sticky in Nuts & Bolts. And the rules mention nothing about font size.

I want to know why everyone else can use any size font they want but Wildaisy is singled out by a moderator? Are moderators making up new rules that apply only to certain members? Is this what Cort meant by allowing them to moderate in their own style. Heaven help us.
There is no rule about font size :) but we do take into account context which is what Martlett was trying to point out. We don't have and don't want a rule to cover everything. We could have a rule in which you can use really big fonts if you're happy but not if you're posting something angry....but that obviously wouldn't work. We have to go by context sometimes.
 

Dolphin

Senior Member
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Dolphin

Senior Member
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Question section could be good

I just finished reading the minutes there. It looks like there will be a question section in future. That could be good and worth preparing for i.e. send in questions in advance. Hopefully they will also allow questions on the day.