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Please sign this NO THANK YOU card to IOM committee

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Dreambirdie, Feb 16, 2015.

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  1. Dreambirdie

    Dreambirdie work in progress

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  2. Min

    Min Guest

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    Signed, many thanks
     
    Dreambirdie likes this.
  3. Dreambirdie

    Dreambirdie work in progress

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    69 signatures so far. Bumping so people see it.
     
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  4. Ember

    Ember Senior Member

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    100 have signed.:hug:
     
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  5. brenda

    brenda Senior Member

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    signed
     
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  6. Kati

    Kati Patient in training

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    Unbelievable that people (many who do not dare signing their name) are disrespecting this committee which included our own experts (Nancy Klimas,Dr Bateman, Dr Rowe, Dr Ron Davis, to name a few, then Lilly Chiu) and poo-pooing their work, because they do not like the definition or the name.
     
  7. Min

    Min Guest

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    We are each entitled to our own opinions on the matter.
     
    Dreambirdie, Wildcat, Iquitos and 2 others like this.
  8. brenda

    brenda Senior Member

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    Kina wrote
    Sasha wrote
    Please allow the same respect that is demanded on the other thread thank you.

    Post reported.
     
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  9. Scarecrow

    Scarecrow Annie Gsampel

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    I understand the reservations that people have about the name and other aspects of the report. Debates is healthy, as is giving feedback to the powers that be.

    It's too late for the committee to change the report. The HHS set the task. If anyone is to be influenced now, surely it's the HHS?
     
  10. Sasha

    Sasha Fine, thank you

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    I agree. As I've mentioned elsewhere, I also have concerns about the name. I think it could have been better and I'd like patients to have been consulted. If it's not too late, I'd still like us to be consulted, although I think the name is enough of an improvement on 'CFS' to live with for two or three years while the science progresses. There are many good things in the report - many others who don't like the name have said so too - but I can understand that people want to focus on what they don't like, so that they can fix it.

    So, if patients are going to challenge the name, I'd like to see a productive protest that has a chance of success, and that shows the committee respect. That committee included people like Ron Davis, a top-flight geneticist who is working flat-out to find a cure for his desperately sick son and for all of us; and other clinicians that have supported us for years.

    People can read the card and the messages that people are writing and can make their own minds up about whether they'd like to join in with it.
     
  11. Nielk

    Nielk

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    When the committee members accepted their spots on the panel of the IOM, they were very well aware that the majority of advocates, experts and patients were adamantly against it, yet they chose to serve on it.

    We are not just upset about the name. It is all about the criteria. They are way too broad and simplistic. (I will go into detail elsewhere what the issues with it are) We had said from the start that we want HHS to adopt the CCC and will not accept anything less.

    This is what we have chosen to do. This is not acceptable to us. We have a right to express our opinions.

    It's interesting to note that when a member posted a negative comment on the thread with the thank you card to the IOM, they were quickly admonished by you and the administrators to take that comment elsewhere.

    This thread is for members who want to express their dissatisfaction of the IOM results and do not accept the IOM criteria or the new name.

    *On a personal note, I am done tiptoeing around. After hearing more news yesterday regarding a most loved member on this forum that ended her life, my anger is spewed. I will not sit by and and play nice while young ME people take their lives because there are no successful treatments for them. This has got to stop and I will do whatever is in my power to propel the science forward to achieve that.

    This IOM criteria will only hold us back.
     
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  12. Sasha

    Sasha Fine, thank you

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    @Nielk, I respect your right to your own opinion on this and to choosing the route you want to take.

    I'm happy for people to look at my thread if they wish and to make their own minds up about how I treated people there and whether I 'admonished' anybody, but I've got no interest in taking this thread off-topic by any discussion of my thread here.

    I agree: this thread is for people interested in signing the 'no thank you' card and I'll repeat: people can read the card and the messages that people are writing and can make their own minds up about whether they'd like to join in with it.
     
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  13. Min

    Min Guest

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    136 signatures now.
     
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  14. CBS

    CBS Senior Member

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    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).
     
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  15. CBS

    CBS Senior Member

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    @Kati - I'm not sure that this is fair or accurate. I looked throught the names of those who signed the "No Thank You" card as well as those that signed the "Thank You" card. There actually appear to be a higher percentage of people signing the "No Thank You" card with their full names (and are therefore identifiable), than those who are using their full names to sign the "Thank You" card.

    It isn't uncommon for people with ME or CFS to try and remain anonymous given the stigma of this disease (something that I appauld you for not doing).

    I do fear that many ME and CFS patients, embarrssment and shame are contributing factors to their eventual deaths.
     
    Last edited: Feb 17, 2015
    heapsreal, Min, Wildcat and 2 others like this.
  16. Dreambirdie

    Dreambirdie work in progress

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    150 signatures as of now. It would be great if we could get 500.
     
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  17. CBS

    CBS Senior Member

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    Do you have to have a Facebook account to sign the card (and respectfully voice my concerns that the IOM committee left the job half done - A report for doctors, by doctors, about how doctors perceive this disease, and one that few if any doctors will ever read - not necessarily how patients experience the disease and with only one short sentence about how there is too little research to say with any confidence about how ME or CFS kills us - One in Five will likely seek relief by killing themselves!)?
     
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  18. Dreambirdie

    Dreambirdie work in progress

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    I am not sure if you need an FB account...? I do have one btw.
     
  19. CBS

    CBS Senior Member

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    Just answered my own question. FB account not needed.
     
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  20. SOC

    SOC

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    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.
     
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