Please sign this NO THANK YOU card to IOM committee

[Marco]

It might be useful to refer to Dr Bateman's comments :

http://forums.phoenixrising.me/index.php?threads/dr-batemans-comments-on-the-iom-report.35692/

 

[Nielk]

Thanks for responding Nielk. I appreciate it.

1. I understand that you are not happy with the new criteria and name and that you don't want them to be adopted. I respect the fact that you are unhappy about them. But my question was not related to that. I was exploring another issue: would you be happy for the IOM recommendations to be rejected outright, and for the US govt agencies to decide to continue with the status quo? In other words, do you think there a danger that by rejecting the recommendations outright, that we will be left with Fukuda CFS. I know it's not a fair situation to be asking you about, but it's a reality that we may be facing. My concern is that if our arguments are not nuanced enough and we're not forming reasonable arguments against the recommendations, then our advocacy may be counterproductive. Perhaps we should be arguing against what we don't like and arguing in favour of what we do like? There is a lot in the report to argue in favour of.

2. So you think that the report is somewhat helpful, overall, but that the recommendations do not reflect the report. I think I might agree with that, to some degree, but I'm still forming my opinions. But many who have signed the card have condemned the report in its entirety for being unrepresentative of our illness. Do you not think that this might be sending confusing and counterproductive messages? The report recommends two-day CPET testing and highlights brain abnormalities and the Lights' research, so why are we condemning it? Do we really want to send the message that two-day CPET tests don't represent our illness? I guess what I'm asking for, from our community, is nuanced/reasoned arguments rather than blanket condemnation. I think that would help us to bridge differences. I hear what you are saying about the 'thank you' card being the same but opposite.

Thank you for your respectful reply, @Bob - It is refreshing.

I agree with you that ideally, we should/could dissect the entire report and point out the good and the bad. This is impossible to do in a card. I think that what people were responding to is the criteria and the name. You might have a point that this should be pointed out.

I should point out though that many do not accept the whole IOM process . They feel it has been unethically forced upon us. They believe that the IOM, seeing how the patient and expert community were fighting against this contract should have retracted the contract. I know that this is wishful thinking but that would have been the moral thing to do. In addition, every member serving on the panel were very aware of the wide range opposition, yet they agreed to serve. Regardless of their intent, it was construed by the community as a form of abandonment. With that in mind, you could understand their continued opposition to the results of the IOM and the need to express this opposition - not just to HHH but to the IOM as well.

 

[Bob]

How sure are you that SEID and the criteria will be a stepping stone? Do you expect us to wait and be hopeful and trusting? Really???

I think your skepticism is justified and, in my opinion, there is an infinitesimal chance that they're going to tear up the IOM's recommendations and replace Fukuda with the CCC or ICC. The reality is that we are currently faced with a choice between Fukuda CFS (i.e. chronic fatigue) and SEID. It might not be a fair choice and it might be an unreasonable situation to find ourselves in, but it's our current reality. Do you have any thoughts about this predicament that we find ourselves in? I.e. given the current choice between Fukuda CFS and SEID, what choices should the community make? How can we best advocate for change going forwards? I'd like us to be able to bridge differences. It would be best if we could all find common ground, so that we can effectively campaign in unison. So I'm genuinely interested in how you view the situation. I'm still forming my opinions, and I think it will take time for our community to fully know where it stands.

 

[Undisclosed]

Please Note:

We are closing both threads related to the ''Thank You" and "No Thank You" cards as they have resulted in too many reported posts that we can't keep up with.

By all means, sign whatever card you wish. It's your own personal choice.

In the future, when the moderation team makes a request (which are posts that appear from us in blue font), please adhere to our requests as we don't make them lightly. Please don't confuse the personal comments of moderators (black font) with Moderation requests.

It's unfortunate that members have become so embroiled in getting their own agendas across that they are resorting to negative comments aimed at both other members and now the staff. It's unfortunate that there is so much anger and tension over the IOM report that we have had to resort to closing threads etc.

We have asked that members treat each other respectfully and follow the rules, please do so.

The link for those that wish to sign the " No Thank you"card is:http: http://www.groupcard.com/c/op-ZpJUDGRj