Please sign this NO THANK YOU card to IOM committee

[Ember]

The government agencies might not even be aware of this card if it's sent to the IOM committee.

Perhaps they should be copied on it.

 

[Bob]

Perhaps they should be copied on it.

If the card is meant as an advocacy effort then that does seem sensible.

 

[Ember]

If the card is meant as an advocacy effort then that does seem sensible. I'm not quite sure what it's purpose is though. Could anyone explain?

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

 

[Scarecrow]

There should be respect for more than one point of view.

I agree.

And as I keep saying, so do I.

 

[Bob]

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

Thanks. The protest needs to go the commissioning government agency, otherwise the advocacy effort seems like a wasted effort. The IOM committee can just delete the email. They have no responsibility towards the public. They were asked to do a job, and they did it. Their job is finished now. In other words, I cannot see the purpose of sending it to the IOM committee in terms of an advocacy project. But perhaps it's not an advocacy project.

 

[Ember]

The protest needs to go the commissioning government agency, otherwise the advocacy effort seems like a wasted effort.

It would seem naive to think that the protest will be kept private.

 

[Janet Dafoe]

I do like the idea of the "Thanks, but no Thanks" card. Not surprised this would be the response of large percentage of patients. There was little, if any, attempt to gain buy-in through the involvement of patients on the panel. Every panel member was an MD (Dr. Alegria has a Ph.D. and specializes in PTSD amongst returning military personnel - wtf?) The panel acknowledges in the report title that this is a simple "rebranding" effort. An effort aimed almost entirely at physicians. There's no pretence of doing anything more than gaining the support of a wider swath of the medical community (in large part by "dumbing down" the diagnostic criteria - I simply cannot imagine my PCP or any other PCP taking the time to even locate the 305 page report).

We need research, not some stupid name that patients will be trying to shed 30 years from now (most, if not all, of us will be dead by then).

Ron Davis is not an MD.

 

[snowathlete]

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.

I actually don't think there is much to worry about here. There is certainly nothing wrong with the idea of a respectful No Thank You card. Everyone is entitled to their views whether positive, negative or somewhere in between. I suspect the majority are in the middle somewhere and will be heard in other ways.
As long as the comments are written respectfully and make reasoned arguements, I see no reason why the IOM woudln't take them on board along with everyone else's views. I'm sure they would have expected a mix of viewpoints both positive and negative for something so major as this. If however, they start reading and the comments they find are rude and disrespectful they'll probably just stop reading and pay it no notice.

 

[Sasha]

I actually don't think there is much to worry about here. There is certainly nothing wrong with the idea of a respectful No Thank You card. [...]

Have you actually read the card, @snowathlete?

I said earlier (twice) that it's up to any individual whether they sign the card and I'll say it a third time now but I hope that people are actually reading the existing messages first to see exactly what it is that they're signing up to.

The recipient of this card is going to read it from start to finish like a document, and your message and your name are going to be a part of the whole thing.

If you haven't already, take a look at the existing messages: by the time you get to p. 15 (page numbers are on the bottom of the card and you may have to scroll down) you'll get the picture.

http://www.groupcard.com/c/op-ZpJUDGRj

 

[Ember]

I said earlier (twice) that it's up to any individual whether they sign the card and I'll say it a third time now....

You wrote on the thread that you started, “If you don't want to sign the card, that's your choice. I think it's more appropriate to keep this thread for discussion among people who would like to sign the card.” I wonder why you're not prepared now to abide by your own standard.

 

[Min]

I have read a lot of the comments and they lòok fine to me. If it's OK to have a thank you card, then it's OK to have a no thank you card.

 

[Iquitos]

I have read a lot of the comments and they lòok fine to me. If it's OK to have a thank you card, then it's OK to have a no thank you card.

Yes, most of the messages do not say anything about the content of the IoM report. Most of them say the new name is stupid and will harm rather than help. That ME was adequate for now and proposing a temporary name to be changed again within 5 years is also stupid and not helpful. It's a diversion, not a solution.

 

[Dreambirdie]

Yes, most of the messages do not say anything about the content of the IoM report. Most of them say the new name is stupid and will harm rather than help. That ME was adequate for now and proposing a temporary name to be changed again within 5 years is also stupid and not helpful. It's a diversion, not a solution.

Actually, quite a few of the comments point out that the criteria is too inclusive, so that does address the content.

 

[Ember]

Yes, most of the messages do not say anything about the content of the IoM report.

Both the new criteria and the name change are parts of the content of the IOM Report.

 

[Sasha]

You wrote on the thread that you started, “If you don't want to sign the card, that's your choice. I think it's more appropriate to keep this thread for discussion among people who would like to sign the card.” I wonder why you're not prepared now to abide by your own standard.

@snowathlete, who sounds as though he would like to perhaps sign the card, and is therefore presumably a legitimate poster on this thread by both our standards, appeared to believe that he would be signing up to a 'no thank you' card that was respectful.

I was responding to the issue that his post raised. In my opinion, there are messages on there that are spectacularly offensive, let alone disrespectful. There's one that describes the report as a "shamefully pathetic piece of work" and says, "I wish this illness on all of you".

That's just one example.

I have read a lot of the comments and they lòok fine to me.

I really don't know what to say to you about that.

@Ember, if you believe my post to be off-topic, please report it to the mods.

 

[CBS]

Ron Davis is not an MD.

Thanks @Rose. My mistake and I stand corrected with regards to Dr. Davis.

 

[Ember]

If you believe my post to be off-topic, please report it to the mods.

It was you, not me, who set the standard of restricting discussion to those who would like to sign the card.

 

[Sasha]

It was you, not me, who set the standard of restricting discussion to those who would like to sign the card.

Then let me address your point again.

You wrote on the thread that you started, “If you don't want to sign the card, that's your choice. I think it's more appropriate to keep this thread for discussion among people who would like to sign the card.” I wonder why you're not prepared now to abide by your own standard.

If someone had posted on my thread that they would like to sign the thank-you card but were clearly mistaken about its nature, I would have been only too happy for anyone at all on the forum to correct them.

In relation to this thread, if someone is mistaken about the nature of this no-thank-you card they're about to sign, don't you want someone to correct them?

 

[snowathlete]

Have you actually read the card, @snowathlete?

I said earlier (twice) that it's up to any individual whether they sign the card and I'll say it a third time now but I hope that people are actually reading the existing messages first to see exactly what it is that they're signing up to.

The recipient of this card is going to read it from start to finish like a document, and your message and your name are going to be a part of the whole thing.

If you haven't already, take a look at the existing messages: by the time you get to p. 15 (page numbers are on the bottom of the card and you may have to scroll down) you'll get the picture.

http://www.groupcard.com/c/op-ZpJUDGRj

I haven't read it, no, but if there are comments like "I wish this illness on all of you" in there then obviously that is pretty sick and shameful and it's obviously not something I, or most in the community would want to be associated with. At the same time I'm not going to worry about it; I very much doubt the recipient will bother reading it. If I was a recipient I'd just delete it as soon as I came across the first abusive comment. Even govt agency staff do not have to put up with abuse like that from citizens. The whole thing will just get ignored.

 

[Undisclosed]

This thread is about a 'No Thank You' card to be sent to the IOM. On the 'Thank You card' for the IOM thread I asked that members not hijack the thread with comments about why the IOM report is so terrible.

I would ask the same thing on this thread, please avoid posts that detail how 'great' the IOM report is. Since the thread is about 'Not thanking' the IOM, then it would be fair to comment if you wish or don't wish to sign this card as this is within the topic of the thread (this was allowed on the 'Thank You' thread).

Are members going to let their anger and the IOM report spill over into directing angry comments at each other?

You can cut the tension and negativity on the forums regarding the IOM report with a knife. Everybody is entitled to their own opinions about the report and please stop taking it out on each other and work on advocating for the best possible result for all of us.