Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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The Call for Opposition: Challenging the P2P and IOM Processes

Discussion in 'Phoenix Rising Articles' started by Nielk, Jan 13, 2015.

  1. Sing

    Sing Senior Member

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    @Nielk Thanks, Gabby, for your very respectful response--post #16--and clear explanation of your thinking. I agree with these goals, and feel that it can be useful for us to respond both ways, through the strategy of "covering all bases", as beaker said.
     
  2. Sing

    Sing Senior Member

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    The main thing is pressure and persistance in a community effort, I agree!
     
  3. Hope123

    Hope123 Senior Member

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    I agree with Sing. Some of the comments here make presumptions about people who are working hard to submit comments or do other things behind the scenes to engage with the government. We're not the enemy and we are not naive. In fact, some of us have a better understanding of whom we are facing and the issues at hand because we engage.

    It would be easy for me to just throw in the towel and do nothing; in fact, it would be better for my health and my family but IMO, to not engage is an error.

    However, you will not see me disparaging those who choose other avenues of protest. In fact, I have supported them with $$$ in the past. History shows that most movements succeed through a variety of tactics and personalities. Think of it as a financial investment portfolio, would you put all you money in only one type of stock? Diversify!
     
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  4. jamie

    jamie

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    Why not add letters to President Obama. He seems like he is in a place where he has no power in congress for the next two years and is wanting to make a difference though government agencies. Give him the basic story of a wrong that has a simple right. To tell the Secretary to stop this process, except the experts disease definition and make the funds available to this disease comparable to other diseases with the same profile.

    Then give him a link to this letter.

    It's a hail mary but why not? They say he is given 10 letters a day to read.
     
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  5. Nielk

    Nielk

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    I think that there might be a misunderstanding.

    There are those who are submitting comments to the P2P in order to improve the resulting final report. Clark Ellis has written an article about it HERE.

    Others have chosen not to send comments directly with the P2P as they feel that would be considered participation. Instead, they have chosen to send comments to key US officials.

    All the efforts by patients and advocates with the aim of improving the plight of the patients are appreciated. The difference being that we have chosen different tactics.
     
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  6. Nielk

    Nielk

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    Just a reminder that protesting does not mean throwing in the towel and doing nothing. From my article:

    What can you do?

    *You can support ME Advocacy by volunteering and/or donating the much needed funds. HERE

    *You can write letters to Sylvia Burwell recording your opposition to P2P and IOM. Sample letters HERE

    *You can join the twitter campaign in opposition. HERE

    *You can join the Facebook group U.S. Campaign for Myalgic Encephalomyelitis (M.E.). This is a closed group of about 400 patients and advocates who refuse to embrace the government's processes of the IOM and P2P. HERE
     
    ahimsa likes this.
  7. denlander

    denlander

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    I reiterate my support for Gabby's super letter. The remarks are pinpoint on target. Gabby quoted me correctly in saying that the Government was wasting precious funds with a scheme to minimize the devastating effects of this disease and sidetrack patients into ineffective treatment.
    Derek Enlander MD ,
    New York
     
  8. jimells

    jimells Senior Member

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    See this front page story from Aug 2012
    So has there been an increase in research in the last 2 1/2 years?

    Instead of research we got P2P and IOM. My version of the story is:

    Obama to staff: "Take care of this"
    Staff: "Sure Boss, we'll cure the illness by re-defining it out of existence. "
     
  9. Izola

    Izola Senior Member

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    Maybe we should start inundating the congress and president with letters. Years of challenging the HHS, CDC & NIH does not seem to get us anything but grief and crumbs.

    Nielk, you piece was great. I am sorry I have run out of the ability to talk. You rock. I pledge my dead body to be deposited on the steps of HHS or CDC.

    I skipped some of the posts above. I went back and saw the Obama comments. At least he listened. Now it is up to us to keep his attention. It appears that he believed us long before most every one else in power.

    I'll come back to this if I can. iz
     
    Last edited: Feb 4, 2015
    beaker likes this.
  10. leela

    leela Slow But Hopeful

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    @Nielk I'm only just seeing this outstanding article now.

    What an incredible gift to the community. Truly stellar--thank you so much.
     
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  11. shastamax

    shastamax

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    Beg to differ, but the IOM report is the best thing to happen in my 20 years of having this illness. I'm not brainwashed. I'm as mad as the rest of you about the lack of progress. But consider that the IOM report has generated a highly prestigious place to refer doctors and others who still believe this is not a real and serious illness. It has generated a number of well done media pieces (NPR, NY Times, The New Yorker). I am a biomedical researcher, so maybe can lend some insight. It has recently become a common and very fruitful approach in biomedical research to get outsiders involved. The outsiders in this instance became very well educated about our illness by working on this report for a year and going through all the literature published in the last 60 years. Ellen Wright Clayton (chair of the IOM ME/CFS report group) has become quite the advocate for our cause. She is on our side! Let's support her and work to see that the IOM report call for much more funding gets translated into action.
     
  12. Nielk

    Nielk

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    As a biomedical researcher, how often have you seen HHS contract with a medical institute to redefine a disease that has already been defined by the private expert medical clinicians and researchers?
     
  13. out2lunch

    out2lunch Senior Member

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    BINGO! :thumbsup:

    Redefining our disease seems to serve the interests of those outside the patient community for the most part. And as @Nielk correctly posted, the actions of HHS to rely on an outside "medical institute" to pull this bait-n-switch with the very definition of what we're suffering from, is more than beyond the pale. It's unprecedented.

    Instead of striving towards gains with regard to understanding this disease and how best to treat it, HHS takes a giant step backward in doing anything remotely effective with regards to stimulating research for physiological etiology and not just psychiatric. Simply entertaining the validity of GET/CBT throws cold water on the whole process, IMHO. How can we be expected to take these so-called professionals seriously, when they don't take the decades of peer-reviewed research seriously?

    The conspiracy theorist in me continues to rage on, believing that this whole HHS/IOM/SEID nonsense is more about throwing SSDI a lifeline than working to support our community in all areas of our daily lives, especially being able to meet our basic survival needs.

    I believe that HHS is paralyzed with overwhelming fear about the SSA fiscal consequences of fully acknowledging the permanently debilitating nature of our disease, and has proactively taken steps to tamp down any and all efforts to help our community receive disability payments, literally holding us hostage, to borrow this wonderful metaphor, to the whims of the ignorant and intolerant folks throughout the disability bureaucratic food chain, who routinely deny us SSDI and SSI out of that ignorance and intolerance.

    Until HHS can get behind the researchers who have proven the destructive nature of GET/CBT in treating our illness, nothing substantial is ever going to be accomplished through the agency. It's obvious to me and a huge swathe of our community, that these recent actions by HHS are just another form of lip service designed to keep us in our place and foolishly believing that they're on our side. :cautious:
     
    *GG* likes this.
  14. caledonia

    caledonia

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    Izola likes this.

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