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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Discussion/Comments re 12/13/2017 and 12/14/2017 CFSAC Meetings

Discussion in 'General ME/CFS Discussion' started by Wally, Dec 13, 2017.

  1. Wally

    Wally Senior Member

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  2. Wally

    Wally Senior Member

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  3. Wally

    Wally Senior Member

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    Meeting is currently on break.

    Fell asleep while watching/listening to meeting. Apparently my prescription sleeping pill to listen to people hold meetings while I listen tucked in my bed. I wake up when filler music plays at breaks. Not sure what this says about me and the HHS meetings, but this happens pretty much like clock work for the CFSAC meetings. However I thought the beginning of this meeting (fell asleep only 10 minutes into the meeting) seemed like there was a slight shift in how people were presenting, but Beth Unger still does not seem to get it. Liked Teri Wilder’s (sp?) direct questions and follow up.

    Will post again when meeting is back online (hopefully before I fall asleep again - I guess I will not be at the head of the nomination list for new CFSAC members ). :)
     
    Last edited: Dec 13, 2017
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  4. Wally

    Wally Senior Member

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    Meeting back live at 1:29 pm EST - 12/13/2017.
     
  5. Wally

    Wally Senior Member

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    Public Access to 12/13/2017 CFSAC Meeting has now ended.

    The voting members of CFSAC will reconvene this afternoon for closed session to receive “Ethics” training.

    I would like to see the training materials used for this “Ethics” training. I wonder if a FOIA Request would be needed to obtain these documents or if CFSAC would make this information publicly available on their website? I will let you know if I am able to obtain an answer to this question.

    Wally
     
    Last edited: Dec 14, 2017
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  6. ukxmrv

    ukxmrv Senior Member

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    I managed to listen to most of the patient input part. Some very good contributions there as usual.
     
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  7. Wally

    Wally Senior Member

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    Last edited: Dec 14, 2017
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  8. Wally

    Wally Senior Member

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    Announcement at the start of the meetung - 1) Recording of these meetings (12/13/2017 - 12/14/2017) will be put up on Youtube after the holidays per the ME/CFS community’s request. 2) Meeting today (12/14/2017) will end today at 4:30 pm (EST) not 5:00 pm (EST) to accommodate CFSAC members who have flights out of D.C. in the evening.
     
    Last edited: Dec 16, 2017
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  9. Wally

    Wally Senior Member

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    Announcement - “Common Data Elements” (CDE ) developed by NIH ME/CFS Working Group will be made available to the public tomorrow on the CDE website for the government’s third party contractor handling this project with links to this website on the NIH Working Group website and through the listserv for this NIH Group. When this information is posted tomorrow, it will be available for review and public comment from 12/15/2017 through 1/31/2018. (Note - the posting of the CDE’s link by the NIH Working Group tomorrow will be posted in this thread tomorrow and also set up as a separate thread.)
     
    Last edited: Dec 14, 2017
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  10. Wally

    Wally Senior Member

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    Today’s (12/14/2017) CFSAC Meetings Agenda

    CFSAC Meeting Agenda for 12/14/2017

    Day 2

    9:00 a.m. Call to Order, Roll Call :CDR Gustavo Ceinos, MPHDesignated Federal Official

    9:10 a.m. Opening Remarks: Faith Newton, Ed.D Chair, CFSAC

    9:20 a.m. Agency Updates
    National Institutes of Health: Vicky Whittemore, Ph.D
    Health Resources & Services Administration: CAPT Sophia Russell, DM, MBA, RN
    Agency for Healthcare Research & Quality:Theodore Ganiats, M.D.
    Department of Veteran Affairs Drew A. Helmer, M.D., M.S.

    11:00 a.m. Public Comments: Members of the Public

    12:00 p.m. Lunch

    1:00 p.m. Report from the Pediatric Education Working Group and Parent Information Center Update:
    Faith Newton, Ed.D Chair, CFSAC and Carmen Sanchez:Education Program Specialist, US Departmentof Education

    1:45 p.m. Break

    2:00 p.m. Research Update on Adults ME/CFS: Jose Montoya, M.D. CFSAC Member

    3:00 p.m. Research Update on Pediatric ME/CFS
    (Calling in) Rosamund Vallings, M.D.Invited Speaker, Howick Health and Medical Auckland, New Zealand

    4:00 p.m. Closing Remarks and Next Steps: Faith Newton, Ed.D and CDR Gustavo Ceinos, M.P.H.

    5:00 p.m. Adjourn

    **Final agenda subject to change due to availability of speakers9:00 a.m. Call to Order, Roll Call :CDR Gustavo Ceinos, MPHDesignated Federal Official
     
  11. Wally

    Wally Senior Member

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    Public comments to proposed CDE (Common Elements Data) for ME/CFS to be posted tomorrow 12/15/2017 (see reply no. 9 above) are welcomed from organizations. This is an opportunity for Phoenix Rising to provide public comments as an organization. @Butydoc, @Janet Dafoe (Rose49), @adin

    If you are not familiar with the terminology “CDE” and it’s potential effect on patients, here is a link to information about their purpose and use. https://www.nlm.nih.gov/cde/
     
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  12. ukxmrv

    ukxmrv Senior Member

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    I'm finding the discussion on the VA's redevelopment of the existing pamphlet very disturbing. I've not seen it.

    At the moment they have lumped ME and CFS under an umbrella of "chronic multi symptom diseases".

    They are going to use a contractor to re-write the pamphlet and they are asking Dr Klimas to comment but it sounds utterly doomed.

    They also lump Gulf war syndrome under the same umbrella.
     
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  13. Wally

    Wally Senior Member

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    Seems like some of the discussion by CDC representatives (Beth Unger) in yesterday’s meeting and by VA representative (Drew Helmer) is peeling back some of the layers of the onion in the bureaucratic maze of the HHS and other Departments. The great questions being asked by some of the members, which put the government representatives attending this meeting in the hot seat, do shine a light on their internal processes and lack of creativity to work around old traditions or information. ME/CFS has been so institutionally compartmentalized with old ways of thinking, so that it becomes quite obvious in a public forum why real help for this illness has been so difficult to obtain within the existing U.S. Health Agencies.

    My own comments/observations re the Patient Advocates with a seat at the CFSAC Meeting Table -

    1) Just love the Southern Charm (drawal) of Teri Wilder when delivering a zinger with such a sweet and polite manner (I dare Teri to faint on the table to demonstrate how difficult it is for a sick patient to attend this meeting and stay upright. CFSAC get these patient volunteers some accommodations with some comfortable reclining chairs to sit in and some nice blankets to keep them warm in what is probably a room that is a bit cold due to the temperature outside.)
    2) Donna Pearson is doing a great job on posing questions and repeating them until her questions/points can not be missed by anyone in the room.
    3) Courtney Miller is also playing the role of passing out pats on the back to those within the government who do seem to be trying to help make some changes in the attention this illness receives from the government, while not letting the point be missed that this movement of the pendulum is not across the board of govt. agencies and does not come close to addressing what needs to be done immediately to help patients with this illness.
     
    Last edited: Dec 14, 2017
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  14. Wally

    Wally Senior Member

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    Public comments taking place right now.

    1) Carol Head of Solve ME/CFS is making a pitch to help work with any of the govt. agencies to keep the government’s work on this illness moving forward.

    2) Anonymous Caller - ME Patient since 1978 sharing the poor treatment she has received by a world class health institution (UCSF in San Francisco, CA) and their poor response to wanting to learn and deal with this illness. Using UCSF as an example of what is happening at many U.S. Medical Institutions. Once again another great patient comment!

    3) Nicole Bettencourt - patient located in NY, filmmaker, mother and ME sufferer since 2014. Father died of AIDS and she sees so many similarities to her father’s illness of AIDS. Her father died at 50 years old and she is now 49 years old and wonders what the future holds for her and her young daughters. Very emotional delivery. Wish I could reach through the computer/phone lines and give her a huge hug. We hear you, some of us really get what you are saying and feeling. We are fighting for you and all of us who have been devastated by this nasty illness. We will not give up on this fight.

    4) Mark Camenzind - Father and caregiver to his son, Tom Camenzind, a severely ill patient, who was struck down by this illness while attending Stanford University. Raising issues of discrimination, lack of enough funding, lack of drug options/treatments and no investigation/tracking of current cluster outbreaks.

    5) Three commenters appear not to be available to speak when they were called to present their comments. They are now searching downstairs for Eileen Holderman who came to present her comments in person. Chair stated that there is concern she may be stuck downstairs and not able to get to the meeting room. Eileen is a patient advocate and prior CFSAC Member. She is always an eloquent and passionate speaker for patients. Hope that Eileen can be found and they make an exception to their schedule to let her speak when she makes it to the meeting room. Let Eileen Speak!!!
     
  15. Wally

    Wally Senior Member

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    Dr. Montoya is speaking. He will also present in the afternoon session at 2:00 pm (EST) with an update on research in adults with ME/CFS.
     
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  16. Wally

    Wally Senior Member

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    Eileen Holderman has been found and is speaking now. Taking CDC to task for failure to do their job. Eileen - thank you for not letting Beth Unger and CDC off the hot seat for their poor performance in responding to requests of patients, advocates, other stakeholders and the CFSAC.

    My own additional comments about the CDC and our leaders in the U.S. Government.

    1) The CDC have been a major hindrance to this illness and unfortunately the current management of this agency continues to do so. It does not matter how much the CDC toots its own horn, how much they might be working on right this minute to “try” to improve things for ME/CFS patients.

    3) Perhaps the highest levels at the HHS, the President and Congress need to take a “very” close look at how the CDC has handled this disease and how it continues to drag its feet to become a leader rather than an alabatross in implementing immediate, substantial change to this mistreated and neglected illness.

    4) Perhaps, the HHS, the President and the Congress need to reflect on where this disease was over 20 years ago and the “mysterious” reasons that why this illness is so difficult for the U.S. Government to light a fire under their backsides, to effectively and expediently address this illness that effects and devastates so many lives of their citizens. See, 1996 PrineTime News Segment About ME/CFS that covered the progress the government was making or not making in addressing this ongoing illness, 10 years after the large cluster outbreak in Lake Tahoe and surrounding areas. See,


    4) We (I) will not be quiet and use an “inside voice”, as suggested by a former CDC employee and scientist. We are coming to your doorstep to speak up and out - loudly and clearly to make it very uncomfortable for you to avoid your responsibility to address this illness in the same manner this Country has done for Polio, AIDS, Alzheimer’s, Ebola, Zika and the flu (just to name a few other illnesses that receive your attention with a sense of urgency, large amounts of funding, and the ability to cut through bureaucratic red tape).

    5) This Country should be so ashamed of how it’s citizens and others around the world have been treated or not treated because this illness never seems to get its turn to be at the top of the list for attention and help. How long do these patients need to wait in line to get your attention - 30 years, 40 years, 50 years or longer? Are the sins of those who neglected Tuskegee patients of the past being repeated on ME/CFS patients and their families?

    6) To the Secretary of the HHS, President Trump and Members of Congress - How many more patients will we need to bury? How many more lives and families will need to be sacrificed because you are not doing your part to correct past mistakes/neglect and really change the future course of this illness?
     
    Last edited: Dec 14, 2017
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  17. Wally

    Wally Senior Member

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    Meeting on lunch break until 1:00 pm (EST). This ME patient is exhausted and needs to rest. Anyone else who might be interested in reporting on this afternoon’s meeting, please feel free to take the reigns of this thread. I will return later not just sure when my body will cooperate with my desire to do so.
     
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  18. ukxmrv

    ukxmrv Senior Member

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    Thanks Wally, had to take a break myself as brain imploded and simply could not follow Elaine's great talk.

    Looking forward to Montoya at around 7pm GMT but hope he speaks slowly enough for me to understand. Hope the captions are accurate if not.
     
    Last edited: Dec 14, 2017
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  19. voner

    voner Senior Member

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    I thought Dr. Montoya‘s presentation was pretty fascinating. At least the part that I caught. he came across as an enthusiastic and caring clinician/researcher. it’s worth a watch when they post the video, in my opinion.

    he said that Dr. Younger is finding that leptin levels fluctuates with symptoms and another Committee member suggested some pharmaceutical corporations are very knowledgeable about about leptin and how it interacts...so she suggested that Dr. Montoya/Yoinger talk with them.

    I think I remember that he also thinks there may be a mechanism in the bone marrow ...looking for private funds to investigate. I missed the details on that one.

    fda representative on the committee seemed real helpful... he indicated that the FDA wants to help with the drug approval process he also said that at this point the FDA is very sensitive to The fact that there are no approved drugs for ME/CFS.

    anybody else watch it and have something to add or want to correct what I said? My memory is pretty poor.
     
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  20. cb2

    cb2 Senior Member

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    What I got from the last few minutes with Montoya he says when the viruses suppressed truly suppressed for six months to three years when people seem to get better said herpes one through four can be treated with any of the antivirals herpes five through eight need the Valcyte . He also said there is a group of patients that are nonresponders that he would like to be able to focus more time on how to help them. One woman on the panel mentioned that Valcyte has really changed and improved her son's life. I didn't get here if anybody addressed dealing with side effects
     
    Last edited: Dec 14, 2017
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