Please sign this NO THANK YOU card to IOM committee

[Min]

I wonder how many signatories of the No Thank You card are not patients. I can see the BPS crowd and ME-haters having great fun with this one.

Exactly the same question could be asked of the thank you card. What point are you making?

 

[Nielk]

I wonder how many signatories of the No Thank You card are not patients. I can see the BPS crowd and ME-haters having great fun with this one.

Why? Because we choose to take a stand and to express our views?

 

[Dreambirdie]

171 and counting....

 

[SOC]

Why? Because we choose to take a stand and to express our views?

Not at all. Read carefully. I believe everyone is entitled to their own opinion and has the right to express that opinion. I respect your right to disagree with the IOM report and encourage you to express that disagreement in constructive ways. Since I have never been inclined to write a No Thank You card, no matter how much I disliked someone's gift or effort, this particular method seems more ill-mannered than constructive, but that doesn't mean I think you shouldn't do what you think is best.

There are many people out there who feel the IOM's report emphasis on the seriousness of this illness, it's physiological (as opposed to psychological) basis, and it's rejection of the BPS model is dangerous and misguided. We know who many of those people are and we have encountered many others recently (read some of the comments at Medscape). A No Thank You card like this gives them a gigantic bullhorn to use to easily and loudly scream their disapproval. They don't have to construct a coherent argument, they just have to sign the card as if they were patients. Do you think those people aren't signing your card, too?

I'm sure that plenty of the signatories are concerned patients. I just wonder how many are nonpatients trying to derail the first official, government-sanctioned report that firmly rejects the BPS model and insists on this illness being treated as a serious, somatic condition.

 

[SOC]

Exactly the same question could be asked of the thank you card. What point are you making?

I see no reason the BPS school or our other detractors would be at all interested in signing a card thanking the IOM committee for pointing out that ME/CFS is a very real, very serious, somatic illness and most certainly not a psychological condition.

 

[Min]

I see no reason the BPS school or our other detractors would be at all interested in signing a card thanking the IOM committee for pointing out that ME/CFS is a very real, very serious, somatic illness and most certainly not a psychological condition.

So the signatures on the thank you card are from patients, but many of the ones on the no thank you cards must be fake? Where is the evidence? Doesn't this idea reflect a personal bias rather than reality? I have seen a huge amount of criticism of the IOM committee amongst genuine patients.

 

[ballard]

The "No Thank You" card makes me genuinely heartsick. Our friends on the IOM committee have stuck their professional necks out to try to help us. This slap in the face will hurt them. Why would anyone want to work for us in the future when their best, genuine efforts have been disrespected?

So much good has already come out of the report. There has been enormous media coverage in both the popular media and media read by doctors. We have shed the hated CFS name and made a clean break with the past while acquiring a definition for diagnosis that is so clear that any doctor can make it with ease.

Please reconsider sending the "No Thank You" card. It will only cause hurt and harm.

 

[Ember]

So much good has already come out of the report. There has been enormous media coverage in both the popular media and media read by doctors. We have shed the hated CFS name and made a clean break with the past while acquiring a definition for diagnosis that is so clear that any doctor can make it with ease.

“What's sauce for the goose is sauce for the gander;” there are other threads for praising the IOM Report.

 

[ballard]

Sorry I got carried away praising the report in this thread. I was really trying to make the case for the wisdom of sending the "No Thank You Card." I think it will hurt our friends.

 

[Wildcat]

.
The attempted silencing and semi-demonising (on this forum) of those who are making valid criticism of the IOM Report and proposed new Name, is becoming pretty disturbing.

For example: "Why would anyone want to work for us in the future when their best, genuine efforts have been disrespected?"

Such statements are rather manipulative, rather infantilising, and not in keeping with democratic processes. And we have heard them so many times before.

 

[Scarecrow]

.
The attempted silencing and semi-demonising (on this forum) of those who are making valid criticism of the IOM Report and proposed new Name, is becoming pretty disturbing.

I'm all for valid criticism, Wildcat, even if I don't agree with it. But it should be directed at the HHS.

 

[Min]

.
The attempted silencing and semi-demonising (on this forum) of those who are making valid criticism of the IOM Report and proposed new Name, is becoming pretty disturbing.

Yes, it is becoming disturbing, thank you. There should be respect for more than one point of view.

 

[Ember]

I'm all for valid criticism, Wildcat, even if I don't agree with it. But it should be directed at the HHS.

Do you not think that it's more appropriate to keep this thread for discussion among people who would like to sign the card?

 

[Wildcat]

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@Scarecrow wrote: " I'm all for valid criticism, Wildcat, even if I don't agree with it. But it should be directed at the HHS."

The 'thank you's' are being sent to the IOM.

 

[Scarecrow]

Do you not think that it's more appropriate to keep this thread for discussion among people who would like to sign the card?

The 'thank you's' are being sent to the IOM.

Well, I'm torn now whether to respond now. PM if you like.

 

[Wildcat]

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Its the IOM Committee who urged the patients to 'ACT UP'.

I cannot imagine how ME sufferers doing AIDS-Activist style 'ACT-ing UP' would go down here, when simply writing on a collective card elicits such disapproval.

Would we see similar disapproval, and urges to "Be Nice and Agree with the IOM or Be Quiet" from this Forum?

.

 

[Scarecrow]

@Wildcat, I'd like to respond but I'm being asked by Ember not to.

 

[Min]

Do you not think that it's more appropriate to keep this thread for discussion among people who would like to sign the card?

Yes, this is what a moderator posted on the thank you card thread:

"Why derail this thread, which is a request to sign an e-card, with comments that really are more appropriate on other threads."

 

[Dreambirdie]

181 signatures and counting....

Please pass this link along to anyone who is unhappy with the IOM committee's decisions and wants to voice their protest about it.

THANK YOU!

 

[Bob]

This card should surely be sent to whomever commissioned the report, shouldn't it? The people at the top? The government agencies? The IOM committee were simply fulfilling a role that they were assigned, apparently to the best of their ability. And the IOM committee can/will ignore this card. The government agencies might not even be aware of this card if it's sent to the IOM committee.