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Well, I like the IOM report! Who do I thank?

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
I haven't been able to read the long report yet but I gather there is a lot to appreciate and I would support and sign a letter of thanks.

I like the idea of using a single contact (Kate Meck?) and combining forces so as not to overwhelm anyone with volume; would a group card work, or would that not have enough room for details?
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
We have to be careful in talking about behaviours and worsening/improving. For example, if you have a headache and treat it by hitting yourself in the head repeatedly with a hammer, that is not going to help. Yet the worsening is not core to the original cause of the headache . .. unless maybe you have used that hammer before. Poor behaviour does not have to have anything much to do with the original problem.

Pacing is a behavioural strategy. So it eating healthy, resting, etc. Behaviour is about modifying how things are managed.

GET and CBT are also behavioral, but not reliably helpful and not demonstrated as particularly helpful in any objective sense. Even subjectively the results are poor and within expected study bias.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I had this reply from @jspotila on her blog (thanks again, Jennie) when I asked her who to send thanks to:

jspotila said:
I bet an email to mecfs at iom dot edu would be conveyed to the committee.

A group card is a possibility - we've send those to people we wanted to thank before (one was set up to thank Maria Gjerpe of MEandYou, for instance). I think that was a groupcard:

http://www.groupcard.com/

I don't have the brains in to look at that at the moment, unfortunately (I'm having a bit of a problem with sequential instructions these days). But if it was possible to set it up, it might be a nice thing to do.

What do people think? Does anyone have the wits to start one going?
 

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
I can do it. We have 300 characters for a message. I take that to mean from the group rather than individuals. Any one want to come up with an extremely pithy thank you for a 300 page report? Who has a way with words?

When do we want to send it or, to be put it another way, how long to allow people to sign?

Is it ok to send it from the Phoenix Rising Community @Kina?
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I can do it.

Glad one of us has a brain (your avatar notwithstanding). Thank you!

Scarecrow said:
We have 300 characters for a message. I take that to mean from the group rather than individuals. Any one want to come up with an extremely pithy thank you for a 300 page report? Who has a way with words?

Here's the card that was sent to Maria:

http://www.groupcard.com/c/zMGag9wWEjE

It does look as though the card's originator makes a sort of statement and then everyone also gets enough room to add a little message of their own if they want.

300 characters is about 60 words. Shall you and I PM and come up with a message?

Scarecrow said:
When do we want to send it or, to be put it another way, how long to allow people to sign?

Two weeks? Or is that too short? Don't want to drag it out too long, though...

Is it ok to send it from the Phoenix Rising Community @Kina?

Do we want to restrict it to us or to let anyone sign? I'm thinking the more the merrier...
 

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
Here's the card that was sent to Maria:

http://www.groupcard.com/c/zMGag9wWEjE

It does look as though the card's originator makes a sort of statement and then everyone also gets enough room to add a little message of their own if they want.
Ideal!
300 characters is about 60 words. Shall you and I PM and come up with a message?
ok
Two weeks?
Seems reasonable.
Do we want to restrict it to us or to let anyone sign? I'm thinking the more the merrier...
I guess everyone then. How do alerts go out?
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I guess everyone then. How do alerts go out?

I think it would be OK to mention it on Cort's blog, and Jennie's (who have both mentioned the IOM positively). There's Co-cure... others might be willing to post on other forums...

Let's get up in the morning and have a proper think.

I'll PM you now.
 
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Messages
10,157
I can do it. We have 300 characters for a message. I take that to mean from the group rather than individuals. Any one want to come up with an extremely pithy thank you for a 300 page report? Who has a way with words?

When do we want to send it or, to be put it another way, how long to allow people to sign?

Is it ok to send it from the Phoenix Rising Community @Kina?

You should ask the board members.
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
I've had a chance to skim (not read) the report. I have mixed feelings. As far as the overall body of information goes, they cite slews of studies that CDC and others have pretended don't exist, and they draw conclusions based upon them. This is a bonanza for us because this report will carry a lot of weight. Much more than the CCC, which was published in an obscure journal that is not even included in major research databases. This could be used to convince the press and others about what the research really says. But I do not expect the average doctor to read it. If you doubt me, ask doctors you know if they read the text of the Fukuda or Reeves publications that present their definitions. I'd be surprised if they even know these two names. So what doctors will see is the symptom list. And I have some concerns here.

So first, I want to mention the diagnostic algorithm. It starts out by pretty much saying we are a bunch of fatigued people. And then it adds some symptoms that are also required for the diagnosis of ME/CFS. Not SAID, ME/CFS, because the name is a separate issue. But getting back to how algorithm presents this, we are a group of profoundly fatigued people with substantial decrease in function for at least 6 months who suffer with PEM and unrefreshing sleep, plus cognitive impairment and/or orthostatic intolerance. Considering the way this is presented I was not surprised when one news source gave fatigue as the first symptom on their list. And so, in effect, what this does is present us as a subgroup of fatigue, despite the ostensibly good intentions of the committee.

That was the diagnostic algorithm. On the other hand, there is also the statement proposed diagnostic criteria found on page 210. That statement is much better. It does not lead by saying we are a bunch of fatigued people.

So much of this depends on how this is presented (considering that doctors are not going actually read the report). And In my humble opinion, I think patients need to make some noise about the algorithm and what is does.

There's one other thing. I don't take for granted that the IOM report is in. The government could dismiss it. And then what are we left with. We default to the Reeves or Fukuda, not the CCC. So I'm very conflicted about this. On one hand I'd like to criticize this as a worse solution than the CCC. But I don't expect that we will get the CCC any time soon (if ever). So I don't want this report to go away. I don't want the new definition to go away and have most research being based on Fukuda, Reeves, or Oxford.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
@Andrew, note that the CCC starts with fatigue as well. So the starting point of fatigue in the SEID criteria may have come about partly because of the advocacy for the CCC. (At the press conference, Ellen Clayton said that they gave the CCC very close attention, or words to that effect. I thought she was hinting that the were heavily influenced by the CCC, but I may be over-interpreting what she said.) It will be difficult for our community to complain about fatigue being the starting point, after having campaigned so heavily for it to be the starting point.
 
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Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
note that the CCC starts with fatigue as well

Very good point. I had forgotten about that. It was actually my major annoyance with the CCC, and something the ICC had done away with. But you just placed an interesting perspective on this. And maybe we should compare the IOM symptom guide to CCC and Fukuda and see where the IOM actually falls.