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Letter to Sen. Barrasso from Ann Brewer, Executive Secretariat Director, N.I.H.

Discussion in 'Action Alerts and Advocacy' started by Mya Symons, Apr 8, 2011.

  1. Mya Symons

    Mya Symons Mya Symons

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    I have been waiting to get permission to post this, but I have not heard back. I really wanted to get your take on this, so I am going to take my chances. What do you think of the NIH's response?

    Here is the letter, converted from PDF to text

    April 6, 2011


    Dear ,

    Enclosed is a copy of the response I recently received from Ann Brewer, an Executive Secretariat Director at the National Institutes of Health (NIH), regarding your concerns about members on the Center for Scientific Review Special Emphasis Panel. I hope you find this information useful. If you have any additional questions or comments, please do not hesitate to contact me.

    --------------------------------------------------------------------------------



    PS Senator Barrasso is pretty awesome.
     
  2. insearchof

    insearchof Senior Member

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    Hi Mya

    If I understand this correctly, you engaged a Senator to write to the NIH to express concerns regarding the Scientific Review Special Emphasis Panel, which I take it is a part of the NIH.

    You used a pro former campaign letter initially to register your concern with the NIH, which went unanswered, which in turn inspired you to engage your representative to make an enquiry on your behalf.

    I can understand the NIH not responding to thousands of pro forma emails due to resource limitations. I would hope however, that they will reply to the 100 personal letters they received regarding the objection of a foreign virologist or other questionably suitable individuals sitting on this board, which I think are valid objections.

    Further, I would not be too pleased if I was an American, to learn that the NIH funded international researchers when there are those such WPI crying out for research grants -and who have been turned down. I think that, in and of itself, would require a letter expressing my concerns.

    I turn now to the following paragraphs.

    .


    I have been quite vocal in other threads here, about personal attacks being made on scientists rather than focusing on their scientific work. It is unnecessary, unsavoury and is very short sighted given that there are few scientists willing to risk their professional standing to undertake serious research in a field that many consider to be the micky mouse area of science. To read that a scientist has suffered personal threats is distressing.

    Having said that however, equally distressing is the paragraph making reference to CFS activists. It is absolutely disgraceful that a government body in the 'land of the free and the brave'' that willingly justifies intrusions into other countries espousing the virtues of democracy in the process- can then - wage a thinly veiled attempt to stifle that very process by vilifying those who participate in it.

    It is stated that CFS activists have impeded the process of the NIH to recruit a virologist to this panel. If there has been an impediment in this process, then I strongly suggest that the impediment may have been an internal one, and not the result of those working hard to be heard.

    I do not believe that the pool of potential virologists is so small that there would be no candidates to fill the position, especially when the NIH by its own admission, may make international appointments.

    Further, my understanding of a sensitive situation of this nature, would call for confidentiality by all parties (including the victim) in all the circumstances - so as not to jeapodise the victims well being or any current or subsequent investigation, be internal or external. (ie: FBI / Interpol).

    Therefore, how would knowledge of this matter be known to other virologists, and or in such detail, that they would shy away from considering any position offered?

    These are matters that need to be addressed with the NIH. The finger needs to be pointed squarely back at it, not the activists who have no involvement in the managment of NIH affairs. Activists cannot be blamed for the illegal act of one person, or for the NIHs inability to secure an appropriate virologist.

    Frankly, this response should be strongly tackled by your representative. I see it as nothing more than a form of instutionalised bullying. CFS activists would also do well to see it as such and should not be deterred from their efforts.

    ISO
     
  3. Mya Symons

    Mya Symons Mya Symons

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    In search of, thank you for replying. The letter I sent to Senator Barrasso was one from this forum that someone had provided. Senator Barrasso then took it upon himself to contact the NIH (This is why I like him. He always responds to the letters I write him and takes further steps to find out more.)

    Regarding this paragraph: "--A group of chronic fatigue syndndrome(CFS) activists have objected to many of the
    appointees to this committee solely because of their beliefs about what may cause
    CFS. This has impeded the NIH's ability to recruit qualified virologists to serve on
    this review committee, because of threats made against Dr. McClure."

    I agree that it is distressing. I see it as an attempt to discredit or dismiss our concerns. What happened to free speech? Also, it seems from this paragraph that some members of the NIH are still not willing to take us seriously.

    Regarding this: "Further, my understanding of a sensitive situation of this nature, would call for confidentiality by all parties (including the victim) in all the circumstances - so as not to jeapodise the victims well being or any current or subsequent investigation, be internal or external. (ie: FBI / Interpol)."
    --My feeling on this is that most likely Ms. Mclure and associates spoke to other researchers about the threat. Nevertheless, the NIH certainly should be keeping this confidential. However, Ms. Brewer probably did not intend for anyone else to see this letter.

    Regarding the threat to Ms. McClure. I do believe this happened and is not appropriate. However, I thought about this situation last night. If my son were to get sick again, I am not sure what lengths I would go to get him the proper treatment.

    Regarding this paragraph of the NIH letter: "This particular e-mail contains the same wording as other emails that Dr. Collins has
    received that the NIH is considering campaign mail; in keeping with NIH careful consideration and practice, the NIH does not respond to such mail."
    -We should remember this next time and write individual letters and see if we get a response.
     
  4. insearchof

    insearchof Senior Member

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    Hi Mya

    I don't know who was responsible for the leak regarding the threat, but if it was as serious as is being suggested in this letter, then all parties would have been advised ( I-would have thought) not to mention the matter.Therefore, the fault for the NIHs inability to recruit, if it exists on this basis solely and to the exclusion of other common problems associated with recruitment, does not lie with CFS activists. In any event, I repeat, that CFS activists cannot be held responsible for the illegal action of one or more people.

    Further, they have the capacity to recruit internationally which should open up the pool of candidates. Therefore the failing to be able to find a suitable replacement must be an internal one at NIH.

    It is nothing more than the whining of either an incompetent organization (ie to use remote causation to attribute blame outside the organization) or a poor attempt to silence and stop CFS activists from making some beauracrats life difficult.

    Also, if I was one of the100 people who took the time to write an original letter of complaint on this matter, I would definitely want to know " the reasons" why the NIH could not respond.

    ISO
     
  5. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    And this threat could have just been made up or made by a person who they knew. I read somewhere about how the Dept of Homeland security (or perhaps one of their contractors) was threatened and it was traced back to their servers!

    Not sure if this is/was from a reputable site, this is not high up there on my priority list.

    GG
     
  6. Mya Symons

    Mya Symons Mya Symons

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    I think this is an excellent point. It does seem from this letter that she is lumping all of us together and, thus, holding us all responsible for the threats. She mentions the letters from the CFS activists and the threats against Myra McClure in the same paragraph, as if the letters and the threats are the same thing.

    ----"A group of chronic fatigue syndndrome(CFS) activists have objected to many of the appointees to this committee solely because of their beliefs about what may cause CFS. This has impeded the NIH's ability to recruit qualified virologists to serve on this review committee, because of threats made against Dr. McClure."

    Yes, we have beliefs about what causes CFS. So what? What does that have to do with virologists refusing to serve on the review committee due to threats? There were no threats in the form letter. The wording of this paragraph is really strange, isn't it?
     
  7. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I don't like this woman's tone. It all also sounds fishy.

    Maybe they don't issue any response at all if a campaign is done. Which is a ridiculous policy. If NIH has victimized us so much that sick people organize an email campaign (rather than just a couple of random people writing in on an unimportant issue), why is that a reason not to respond at all.

    I've written emails (not cut and pasted) to NIH and have never received a reply. I also don't ever remember anyone mentioning on any forum that they had received a reply to any letter they wrote to NIH. It's thus at least disingenous to imply that they respond to non-form letters on ME.

    We haven't objected to McClure solely because of our beliefs on causation. An obvious lie. And what 'qualified' virologists backed down because Dr. McClure supposedly was threatened? They know full well that qualified virologists are exactly what we want. Anyone like that would be given much praise and thanks.

    The statements about the threats against McClure may or may not be true. I think it would be imprudent for anyone to accept anything coming out of NIH or CDC as true without solid proof considering their long history of eggregiously lying about ME.
     
  8. insearchof

    insearchof Senior Member

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    Hi Mya
    The letter implies that all CFS activists or those who dared to question appointments on that committee, are some how responsible for the NIH's inability to fill the position.
    What nonsense.

    How are valid objections or questions regarding appointments or anything else, concerning executive government activity (irrespective of beliefs) wrong?

    How do these valid objections or questions directed to executive government activity -impede the government from filling a position on a committee?

    Yet this is what that letter said. "This (activists objections to the appointees) has impeded the NIHs ability to recruit qualified virologists to serve on this review committee.....''.


    Even though the NIH has given the reason for the impedment in the first part of that sentence (ie activists objections to the appointments) as the reason for the impediment - the letter then immediately states "because of threats made against Dr McClure'' Huh? Wasn't the stated reason the CFS activists objections to appointments as the source of the impedment? Yet they then say ''because'' of threats - suggesting another cause for the impedment. Its hard therefore, not to read the second reason as associated to the first. In other words, this sentence appears to suggest that the threats were some how associated with or arose out of CFS activists objections to the appointments on that committee.

    So it does appear as though the NIH are labelling individuals who have a legitimate democratic right to question executive government on its activities, as not only CFS activists, (when this may not in fact be so) but CFS activists who are some how responsible and to blame for, the illegal activities of one or more persons.

    So yes Mya, I think the letter suggests that all those who lodged a complaint (be it by email or letter) are ''CFS activists'' and that they are all some how responsible for the threats, as well as the NIH's HR recruitment short comings. This is just nonsene.


    It is very hard not to see this is an attack on CFS activism, when what it really represents is a failure on the part of the NIH to fill a position on a committee.

    Could this also be a defensive diversionary tactic on the part of the NIH designed to shut down further examination on the issue of appointments to this committee?

    I note, that NIHs have stated that they refuse to answer legitimate letters on the matter but have failed to give reasons. Perhaps Senator Barrasso could investigate this further.

    ISO
     
  9. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I agree with you, ISO.

    Mya, I am REALLY glad that Sen. Barrasso actually has contacted NIH and responds to your letters! Imo, it is extremely important for us to engage with Congress on NIH and CDC nonfeasance and malfeasance. I would be really thankful if you could continue to contact/lobby the Senator about the abuse NIH and CDC heaps on us.

    It is also great that he is an MD and thus may be less inclined to 'defer to agency competence.' Although, I am sure this was all done by a staffer and he may not even be aware of the interchange. Regardless, it is very good that we at least have a staffer engaged.

    I know it is easy for me to suggest work for you to do (!) but would you be willing to submit a follow up letter to the Senator in response to the NIH letter? You could use (as is or modify) what I have written here; I could draft one for your approval or you could write your own.

    Please also consider rallying fellow Wyoming pwME and supporters to lobby the Senator. We need to pursue as many good leads of people with influence who can help us as we can. We never know which one will take up the cause and make a breakthrough difference.

    Pls stay in touch on this matter. I am quite sick, but am very slowly trying to concentrate on lobbying Congress and related areas and we may all be able to brainstorm and make some progress together.

    Here is a thread (which didn't get far) on Congress:
    http://forums.phoenixrising.me/showthread.php?10009-Congress

    Again, thanks!
     
  10. Mya Symons

    Mya Symons Mya Symons

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    Yes, I would be willing to write a follow up letter. I was thinking about doing that anyway. If anybody wanted to give me some ideas on what to write (what points to make), I would be greatful. Sometimes it is hard to get my brain to do the things I want it to do.:D
     
  11. PANDORA

    PANDORA PANDORA

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    Mya,
    I am reading the thread you started. First, I want to thank you for writing the letter to your Senator Barrasso) He has a strong background in medicine (He is a doctor) and he might be able to raise the good questions that need to be raised. He is also a Republican and in order for the national agenda on ME/CFS to move forward from the legislative side we need both sides of the aisle to collaborate, agree and cooperate in looking at this as a non-partisan fashion and as a national public health interest (if not threat to our national public health).

    I want to share with you all the following:

    1) establishment of the Coalition4MECFS This young coalition is part of (project) of a National Forum on NEI diseases.

    2) Awareness Month and Lobby Day in DC. We need participant to represent their own states on May 11 (lobbying/advocating for young people) and on May 12 for adults and children. Please connect with Michelle Lonchar at mlonchar@pandoranet.info. We are now in the process of making appointments with legislators and congressional leaders. There is much to do and the priority issues n ME/CFS are in the reviewing process and we need the patient community input.

    It is a long and complicated process on lobbying and more specifically on legislative issues. Appropriations requests for money is a dirty word on congress, yet many appropriation requests still do succeed. Language appropriation requests are easier to get done. We have been involved with both so we have a bit of experience on this task, and the success rate has been poor on funding. It is for many reasons ...starting with lack of researchers willing to do the research, to lack of success in finding academic partnerships and support from them toward community based participatory research as well as supporting their few academic staff who embrace ME/CFS and other related NEIDS.

    If you watched the SOK day 2 presentation of Dr. Kenneth Friedman you now know other important reasons why our research does not move forward, why medical students are not being trained on ME/CFS and other NEIDs, and why and what it has been happening behind the scenes have been huge impediments to concrete results and scientific breakthroughs. U.S. Academic institutions are being given our (yours and mine) taxes to promote their goals and I personally object my hard taxes not being spread out effectively, just and equally on the issue of ME/CFS and related NEIDs. This outcome needs to be changed. It is a fairness issue as well.

    Mya, I would love to speak with you by phone soon so you can tell us a bit more of what kind of follow up letter you want to write as we would like to share with you a one or two pointers with you. You can reach me at msilverman@pandoranet.info and if you send me you number I will call you.

    In general science and politics are kept separate - at least they are supposed to be kept separate so the sense of fairness, the desire to move science (facts) plays a dominant role.
    When however we look at the U.S. health care system, specially at the delivery of services and public health initiatives and what we see for ME/CFS and other NEIDs is heart-breaking. It is where we as patient advocates can make a difference. The reality is that we don't lobby NIH. We lobby Congress. Congress is the one that can actually mandate when necessary. What we can do with NIH is to engage them effectively in getting their job done.

    The ME/CFS patient community is medically and financially
    a) Fragile - one cannot advocate effectively when one is facing a disabling and threatening chronic illness. We don't have an effective voice.
    b) At risk - people are dying and are exposed to a life sentence (disabling, painful, and debilitating severe chronic illness)
    c) under served - there are no specific medical treatments for our patient community including FDA approved drugs
    d) vulnerable - financially and healthwise
    e) largely ignored - we don't have a strong political voice - we are invisible

    We need to demonstrate this correctly, factually and seizing each and every opportunity as it comes to us. It is actually simple in some level to come up with a blue-print. All of the comments, brain-storming suggestions I read in our forums are great and mostly can be integrated (in fact many are already being integrated in what we are doing). The key is to organize them, put them in perspective and prioritize them as needed. . There is where the work of a coalition is important. It begs for a coalition of organizations working together - not against each other - and a coalition of patient advocates doing the same.

    We all know that there are competing interests and divergent points of views. (In fact PANDORA appreciates this diversity and we fully embrace it too. Our vision is to address quality of life issues - Our vision is to restore quality of life to the community we serve). Some of us want to spend/invest money in research. Some of us want to spend money in lobbying issues (a very expensive proposition too). Many want both. The majority are more concerned in earning a living and making it through the day - so economic issues are on top of our organization's list. The key is to coordinate these issues in the most effective and prioritize them effectively is a challenge that organizations face every day and so do patients in their daily lives including dealing with family.

    PANDORA is looking for volunteers to comb through the minutes of the CFSAC meetings of past years and compile some stats for us.
    Simply put we need to compile the following:
    1) how many experts have asked for more money for ME/CFS for research?
    2) how many patients have shared that there are no physicians able to treat them in the U.S. ( I can tell you that PANDORA was successful in obtaining a working visa for a young researcher/physician from Venezuela to remain in the U.S. by simply stating that it was a "matter of national interest and public health to provide her with one by sharing the recommendations and the pointers from the CFSAC meetings since 2003.)
    3) How many academic institutions have ME/CFS research programs or include it on their medical curriculum?
    4) How many deans of medical schools support ME/CFS research programs or of other NEIDs as well?
    5) How does this systemic bias or approach has translated to the quality of life of patients?
    6) How children and parents are being abandoned and or even worse parents are being charged with child neglect and or child abuse?
    7) Positions on CDC
    8) Positions on NIH
    &) Place your own question/suggestion here to be compiled.

    I personally find invigorating to read patient advocates speaking up on these issues and trying to come up with ideas, suggestions that are not only feasible but also necessary to create a sense of empowerment and direction to get us where we need to be.

    Click here Awareness & Lobby Day Activities in DC

    Click here for the CDC survey input from the patient community
    Click here for our FB page

    Click here for the Poker Tournament April 30


    Also: a very important note: On April 21 - Chase Community Giving will launch its new round of charity grants. This time is for organizations with budgets between $1 million dollars and $10 million dollars. I spoke with Annette Whittemore and they are in this category. As a former winner, we are excited to be part of this process and support all of the organizations within our community that fall under this category (large charities). So please get ready to be part of this community wide project on Facebook. It is crucial that we get all of our eligible organizations in a strong position within the next 72 hours following the launch on April 21. If we don't do that, it will be difficult to move our organizations forward to the next round. As you can read below All of our eligible organizations must be within the top 100 charities that receive the most votes in round one to qualify for $25K and then they will move up to the next round competing for additional dollars $$$.

    Chase Community Giving (CCG) informed: "TheSpring 2011 program will award $5 million over two rounds of voting. The top 100 eligible charities that receive the most votes in Round 1 will receive $25,000. Those 100 charities will advance to Round 2, with the top 25 charities receiving the most votes in Round 2 voting to be awarded additional... grants ranging from $20,000 to $500,000. The Round 1 voting period will be from April 21 to May 4. Round 2 voting period will be from May 19 to May 25."


    Our overall community needs to understand that in the CCG contest/project there is a built-in process that pushes for collaboration across the public, meaning that if you want to help your favorite organization it will require collaboration across the board, meaning you have to vote for other organizations in order "to promote your favorite one". There was one of the reasons why PANDORA did well last year. Our supporters got extra votes by voting for others and gave us the extra vote too.

    I suggest someone here on this forum to start a thread on Chase Community Giving Spring 2011 so information can be shared and disseminated. Remember CCG will be happening before the CFSAC meeting and it will end on May 25 just about the end of the International Awareness Month for PANDORA and for many other orgs too.

    I could have written more. I think the points I am making here and what I have shared regarding CCG will not take much of your time and stamina. I personally know how our boundaries are set small.

    Thank you for all that you do.

    Marly Silverman
     
  12. Ernie

    Ernie *****

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    For starters I think you need permission to repost even a government e-mail/coorespondence. I would highly recommend removing it unless you have permission.
    Just for the record this Ann Brewer is a Secretary at NIH not a Director of any sort. It is usually a Director that would respond to Senator inquiries, not secretaries. I wonder if Director Collins is aware these statements are being made to Senators, and if not maybe he should be. It appears the original inquiry judging from this letter went to a:

    Mr Francis Patrick White
    Organization:
    NIH
    OFC LEGSLTV POLCY & ANALS (HNAQ)

    And must have been sent to Ann Brewer the secretary, who responded to the Senator with the posted letter. Director Collins would know if he approved this response or not. That's how it works I believe. Plus there is most likely a confidentiality problem here.

    This just sounded like an irritated secretary that had to respond to e-mails. Think she needs to brush up on how to respond to Senators as well as the general public. It is their job to respond to the public. That is who pays their salaries regardless if she likes it or not.

    Still the fact remains this appears to be an e-mail from a government secretary to a US Senator. I would remove it.
     
  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I have no idea what the 'office of the secretariat' is, but it's listed on this NIH org chart as on the same level as the NIH Director (immediately to his right). Brewer is the Director of this office.
    http://interodeo.od.nih.gov/odchart/docs/od-NIH.pdf

    Ironically, Brewer teaches a course on how to draft correspondence 'the NIH way.'

    http://trainingcenter.nih.gov/pdf/highlights/Highlights_4Qtr06.pdf
    I wouldn't remove the post of the email. It was forwarded by the Senator to you, so his office realizes it's now out in the public. I think it was good to ask the Senator for permission. Since he hasn't responded, i would definitely treat it as a 'yes' you have permission to re-post.
     
  14. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Great. You can cut and paste (without attribution as always) or edit the following as the main body of your letter/email. Let me know when you send it, pls. Thanks!

     
  15. eric_s

    eric_s Senior Member

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    Thanks, Mya, this is very interesting. I don't know if it's a good idea to post it without permission, but i think it's great that you could get a senator interested and doing this. This is the sort of contact we need. One more reason to be careful, but great work...

    We can learn a lot from this letter:

    Why Myra McClure has resigned (if that information is correct), what the NIH consider "campaign mail" and how they deal with it, how they see a "certain group of CFS activists" and why they appoint foreign experts.

    I don't have time to read all the posts and write a long message now, so i have to keep it short.

    I don't think the paragraph about beliefs is valid. Yes, most of us are not MDs or biologists, so they can call our opinion "a belief", but the fact is, as far as i remember, that Myra McClure very early on made statements indicating that for her XMRV is not associated with ME/CFS. That it's a contaminant or whatever, i can't go back and check now. While at the same time there were many other scientists who held a diametrically opposite position and continue to do so until this day.
    So i think we were perfectly entitled to having objected to her being appointed, because she had/has a "belief", other scientists have another one, and we did not want somebody appointed who holds the belief we don't share. I don't see anything wrong with that at this point, when the scientific question is clearly not settled yet. XMRV is very promising and so, even if it might turn out to not be of importance, we wanted the side of research represented that is willing to continue this research until we really know what XMRV is and does and not the side that has already made up their mind that there is nothing there. Because XMRV has the potential to change the life of millions.
     
  16. Ernie

    Ernie *****

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    My mistake as far as what type of Secretary she is but there is a specific protocal to follow for congressional mail. I didn't see anywhere in here where she would directly respond to this letter from the Senator. In fact it said she would route it to the appropriate area and Ann even signed this on the website below. I would think Director Collins would have been the one to respond. But then again she did say that mail coming from CFS patients is considered Campaign mail so she may not have felt it was as important. I find it unusual that she would bring up something that may potentially be in litigation if that is indeed the case. I also find it a bit unprofessional to paint a negative picture of CFS patients to a US Senator. I still felt she seemed a bit annoyed to have to deal with something that the Director should be responding to.

    from their website:

    The NIH Executive Secretariat (ES) receives, screens, distributes, tracks, and files correspondence to the NIH Director and Deputy Director from the public, academia, Congress, the White House, foreign heads of state and their representatives, the Office of the Secretary of Health and Human Services, other Government agencies, and NIH staff. ES uses an electronic document management system to track the status of actions related to this correspondence, to route correspondence within NIH, and to maintain the official records of the NIH Director and Deputy Director. ES serves as a key information source for Institute and Center Directors and Office of the Director staff and ensures that the NIH Director has the benefit of all points of view before signing documents that establish or affect NIH policy. ES also edits, reviews, clears, and submits to the Office of the Secretary all NIH congressional reports except those required by Appropriations Committees. ES is located within the immediate office of the NIH Director.
    Ann Brewer
    Director, ES


    All e-mail correspondence is considered confidential and only for the person intended. I would still remove it unless permission was granted. It would need to be granted by both the Senator and the Executive Secretariat since Ann Brewer was the original author, and by the Senator since he forwarded it on with his e-mail.
    Unless permission was granted I would not take the risk.

    All in all this seems a very odd way for a government official to respond. Due to civil rights issues and such that can arise, I would think the response would have been less biased regarding CFS patients. The other issue would have been a matter regarding the authorities.
     
  17. Ernie

    Ernie *****

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    From what I've heard about Senators usually do follow up on inquiries and government officials have to respond to Senators. The problem with this whole thing is that if one individual did something illegal that should be a matter for the proper authorities. CFS advocates have nothing to with what an individual may have done.
     
  18. Freewindblowin

    Freewindblowin

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    Mya,

    I am a lawyer. You do not need to worry about posting the response Sen. Barasso received from his inquiry and forwarded on to you.

    The response the Senator forwarded to you sends chills down my back, it is so demeaning, and also implicitly assumes that the Senator is chummy and understands (wink, wink) this manner of response. It sounds to me that she did not route this correspondence on at all. Her response is reflecting a mindset on the part of the NIH office culture that minimizes the reality and importance of M.E. topics, which thereby not only permits, but encourages the dehumanizing of M.E. people-Americans-patients! The use of labels-(NIH vs. "activists" who threaten and run off virologists, for example!), alarmist accusations- (announcing that the FBI and Interpol are now involved (this makes for a "we are really going to get "them"" punitive office climate)), using inferences, as well as lumping an allegation of threats by one person with all of us, is a version of us vs. "them".

    Mya, if you are still open to (more) suggestions for a response, I can come up with something tomorrow when I am more "on" than at this moment.

    As the job description Ernie found indicates this person "screens" correspondence as well, this person plainly has taken it upon herself to use the "round file" as they say for anything from M.E. people, as well as referring to coming together on an issue as "campaign" mail. Failing to read and heed all input is failing to do the job as described.

    I agree with Ernie, that it is likely that Dir. Collins does not know that Senators are given the brush off with an insulting, broad brush alarmist discussion of their constituents.

    NIH can be its own fiefdom, composed of many different sub-fiefdoms, like any institution or organization can be. Another blockage needs to be removed internally.

    I will check in on this thread later on. Thank you for writing your Senator!
    Lois





    I look forward to hearing what your follow-up provides.
     
  19. Mya Symons

    Mya Symons Mya Symons

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    Wyoming
    Yes, please. I would love all the suggestions I can get. I am currently fighting off a urinary tract infection and sinus infection. In a few days when I feel better and can think, I want to write a letter with the combined ideas. I feel, however, that a letter should also be sent to the NIH regarding the inappropriate response.

    And, I am not removing this post unless the moderators tell me I have too. I want as many people as possible to know how the NIH responded. If I get in trouble, so be it.
     

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