Home > Advocacy, Commentary > Parsing CFSAC

Parsing CFSAC

June 24th, 2014

tangledthreadsI feel like a broken record, saying that the June 16-17th CFS Advisory Committee meeting was frustrating. This meeting struck me as a tangle of threads that can only be understood by teasing them apart. There were signals buried in the discussion that should raise concern in the advocacy community. Rather than summarize the content of the entire meeting, I would like to parse some of the issues with you.
 

Toothless Recommendations

 
Watching group wordsmithing is always incredibly painful. I know many patients got frustrated during the Committee’s discussions of their recommendations. Despite the fact that Dr. Dane Cook’s group presented a comprehensive summary of the Researcher Recruitment Working Group rationale and well-drafted recommendations, the conversation still went off the rails a few times. Rather than recap the whole thing, I’ll just focus on the recommendations themselves.

The first recommendation was for NIH to fund and support a data platform for biobank and clinical data. The idea is based on the NDAR platform, and Dan Hall gave a great presentation on NDAR but not until after the CFSAC had already passed the recommendation. As a result of this backwards agenda, the CFSAC failed to discuss or include a very important element: funding.

Dan Hall estimated that cloning NDAR for ME/CFS would cost about $1 million, and then somewhat less to maintain annually thereafter. The CFSAC recommendation does not include the price tag for the data platform, and no one discussed the feasibility of requesting this kind of funding. Remember that $1 million is 20% of NIH’s annual spending on ME/CFS research. How likely is it that NIH will spend this kind of money on a data platform for us? I strongly support the recommendation, as a data platform like this is desperately needed and none of the non-profits have the resources to make it a reality. But even with the background support document drafted by Dr. Cook’s Working Group, it seems optimistic to believe that NIH will approve this in the short term.

The second recommendation for an RFA was very controversial, and discussed on both days. The original proposal was that the Trans-NIH ME/CFS Working Group, led by Dr. Mariela Shirley, would recommend the content of an RFA based on the P2P Workshop and the 2011 State of the Knowledge meeting. CFSAC member were appropriately concerned about voting for an RFA based on a document that won’t be written for many months. There was extensive argument, but a motion to remove the reference to P2P failed. Chris Williams (Solve ME/CFS Initiative) pointed out that the recommendation would be “toothless” without a dollar figure, but that was ignored.

There was also great controversy over whether to include a deadline for the RFA. A minority of the CFSAC members felt that including a date would kill the entire recommendation. One suggested deadline was December 31, 2015, but Dr. Alisa Koch (new CFSAC member) pointed out that this would mean grants would not even be reviewed until 2016, let alone funded. Eventually, the CFSAC amended the recommendation to state a deadline of “November 1, 2014, or as soon as feasible.” I agree wholeheartedly with the CFSAC members who pointed out that the “as soon as feasible” would be used by NIH to delay the RFA until whenever it sees fit.

Finally, the CFSAC voted to establish two new working groups. The first, suggested by Dr. Jose Montoya (new CFSAC member) will develop a case for Centers of Excellence. This is a long standing and much repeated recommendation of CFSAC, and developing the case for it will be fantastic.

The second working group, suggested by Dr. Gary Kaplan, will examine ways to interface with Patients Like Me and push that out to the community. I was really surprised by this. While the presentation by Patients Like Me was impressive, Ben Heywood admitted that PLM has not invested any effort in building out the ME/CFS community there. There are multiple problems with the way ME/CFS is defined and measured on PLM. And not a single person raised the issue that PLM is a for-profit company. They aggregate and sell their data. I don’t see how the federal government (directly or through CFSAC) can undertake a project that will specifically benefit a single for-profit company.

The worrying signal here is the Committee’s failure to make its recommendations based on a full assessment of all the facts and a view of the overall landscape. Dr. Cook’s Working Group presented the best prepared recommendations we’ve seen in quite some time, but the failure to include target numbers and meaningful deadlines continues to be a problem.
 

Compromising to Get Along

 
The most disturbing thing about the meeting was the conflicting approaches of the CFSAC members. This was most on display during discussion of P2P and the RFA recommendation.

Dr. Cook explained that the reason the RFA recommendation included a reference to P2P was because the group believed NIH would wait for the P2P regardless of what CFSAC said. Therefore, the recommendation should just accept P2P as a done deal in order to avoid antagonizing NIH. Dr. Cook and Dr. Casillas, backed up by Dr. Nancy Lee, said the recommendation would fail otherwise. NIH has apparently sent a letter to IACFS/ME responding to their RFA request, and Drs. Friedberg, Cook and Lee all said that the letter states NIH will wait for the P2P before issuing an RFA (I haven’t seen this letter).

This conciliatory view was expressed most frequently by Dr. Gary Kaplan and Dr. Fred Friedberg (IACFS/ME). I copied down multiple statements from both. Dr. Kaplan said that CFSAC should be “more aligned” with NIH, making a “polite suggestion.” He said CFSAC should “be collegial so they’ll want to work with us.” He also said we have “nothing to fear” from P2P.

Dr. Friedberg was more emphatic. He said that the recommendation should not exclude something just because we might not like it, and that he doesn’t like us vs. them thinking. He said that the recommendation should “eliminate implicit antagonism,” and, “I don’t like the demand quality.” Regarding the prospect that CFSAC (or advocates) may not like some or all of the IOM and/or P2P recommendations, he said we should “make lemonade” rather than engage in  “wholesale condemnation.”

The opposing view was expressed by Steve Krafchick, who said Dr. Kaplan’s collegial approach was “naive.” Dr. Mary Ann Fletcher specifically responded to Dr. Kaplan’s comment as well, saying that the CFSAC charter doesn’t say anything about getting along with NIH. She said that the Committee’s job was to advise the Secretary as experts in the field, and they they were not being fair to patients by putting things off to be collegial.

There was an inherent contradiction in the research recommendations, too. The recommendation on the data platform was passed with no discussion of cost or likelihood of success. There is a need for a data platform, so the Committee recommended it – and that is as it should be. But for the RFA, the majority felt that P2P should be accepted as part of the process simply because that is how NIH appears to be doing business, regardless of the fact that everyone agreed that RFA funding was needed now.

The worrying signal here was identified by Mary Dimmock (from the audience). She pointed out that it was a dangerous precedent to put forward recommendations that seemed likely to succeed, as opposed to the best recommendations that are most needed. I could not agree more. CFSAC’s job is to give the Secretary the best advice, not the advice that the Secretary or the agencies want to hear.
 

Moving forward . . . . together?

 
The last session of the meeting was facilitated by Deputy Assistant Secretary Anand Parekh. I was fascinated by the move to bring him in to lead this discussion. Was this a tacit recognition that Dr. Nancy Lee has had difficulty facilitating discussion about IOM, like the awkward session at the December 2013 CFSAC meeting? The other new development was an actual open forum. In the past, “open” discussion with the audience has been limited to the Chairman selecting questions that have been written on index cards. In this case, members of the audience were handed a microphone and they could address the Committee directly. I wish this had been more widely publicized (a simple email on the CFSAC listserv would have sufficed). I am probably not the only person who would have risked the health consequences to attend for that opportunity. Several prominent advocates had left the meeting by then, as well.

Margaret Jacobs from the American Epilepsy Association presented on the epilepsy community’s experiences with their own IOM report and subsequent cooperation with HHS. Because a number of epilepsy organizations helped fund that IOM study, they had input into the statement of work, received monthly status calls, and received the recommendations a week before public release so they could prepare their messaging. The cooperation before and during the IOM process laid a strong foundation for continued cooperation afterwards, with the epilepsy community and HHS working together.

The same is true for our situation: what happened before the IOM study is setting the stage for what will come after. HHS pursued the IOM study in secret without involving the stakeholders outside the federal government. The ME/CFS advocacy community found out about the contract by accident, and when we protested, HHS simply changed the contract mechanism to one that did not require public notice. There was no collaboration, no engagement, and communications were terrible.

Now HHS seems to think we can all come to the table and work together. I am deeply troubled by the fact that the government holds all the cards here. They will have about a week to prepare messaging on the IOM report, while we will have no opportunity to do so. The P2P report is issued pretty quickly after the meeting, but NIH will be in control of the press conference push behind the report. This simply isn’t creating a dynamic where the stakeholders can actually collaborate. I’m not sure if it will be possible, and the content of the IOM/P2P reports is only one factor in the way.

The worrying signal here is the open question of whether HHS actually wants to change the paradigm and is willing to do the work necessary. Dr. Lee said they “don’t want to do this without [community] involvement,” but if she means the kind of involvement we have had to date, then there is nothing to really talk about. It is going to take a great deal of work on both sides to change the trajectory here.

Dr. Parekh said twice that “there is a lot of angst among patient groups about IOM.” It’s not angst. We have legitimate scientific and policy concerns. Angst is easily dismissed as unreasonable anxiety. I do not know if HHS understands and appreciates the difference.

 

  1. Darlene
    June 24th, 2014 at 13:35 | #1

    Jennie, thanks so much for all the untangling and teasing apart! One of the most “angsty” moments for me during the meeting was when they were discussing press conferences and getting the media involved quickly after the reports were issued with the assumption that the results of the reports would be positive for the patient community. I was glad Mary Dimmock was there to raise concerns about this also. We aren’t celebrities, and I don’t think that in our instance any publicity is good publicity. It’s very hard to trust that the NIH will be able to “cherry pick” (I believe was the term used) the points that should be publicized.

    Also, you are absolutely right that the legitimate scientific and policy concerns patient groups have need to be addressed before we can all be more “collegial” and come to the table and work together. Speaking of which, it seems unreasonable that you have not received a reply to your letter to Dr. Collins about P2P.

    • Jennie Spotila
      June 24th, 2014 at 18:31 | #2

      Yes, no reply from Dr. Collins’ office after almost 30 days is definitely a concern.

      One of the big concerns I have about IOM and P2P is the media push behind both of them. We will be very very hard pressed to try to get ahead of that, and get our own assessment of those reports out there.

  2. kathy d.
    June 24th, 2014 at 15:16 | #3

    Thank you, Jenny, for analyzing these developments and for your infinite patience with all of this “red tape.”

  3. Chris Heppner
    June 24th, 2014 at 15:27 | #4

    Jennie, many thanks again for great reporting, though the content is not encouraging–it looks as if that P2P thing has become a cornerstone for NIH response to ME, and nothing we can do can shake that. I am discouraged, but admire your continuing energy and focus. Chris

  4. Ess
    June 24th, 2014 at 18:25 | #5

    Dr. Nancy LEE’s idea of involvement FOR ME/CFS patients/advocates is to ‘go along’ and not make waves; ‘behave’ (maybe Dr. N. LEE could do that!)

    HHS/NIH/CDC want us to ‘make life easy for them’ TO ‘bury us alive.’ Our non-lives in daily life for years and years with ME/CFS are anything but easy! HHS/NIH/CDC don’t want and don’t care about our input & they haven’t for 30+ years–Dr. N. LEE wants us to ‘go along’ to make it look good (for her).

    It AIN’T lookin’ good at all! It ain’t, Dr. FRIEDBERG and Dr. KAPLAN–you were hoping for that too–we heard you. Don’t bother with the platitudes, lectures, guilt trips, etc. and attempt at brainwashing as you zone in on ‘the goodness of human nature.’ We AIN’T gullible!!

    KAPLAN also animatedly referred to the ‘jury model’ of the P2P more than once–seriously referring to going ahead with the ‘jury process.’ Ahhh — patients on trial for disease. YUP that sure makes a lot of NONsense; KAPLAN right into that ‘jury model’ of the P2P . . . KAPLAN also made a comment referring to ‘legitimate’ pain.

    KAPLAN really into wanting media there for the unveiling of the IOM decisions–KAPLAN says we have media attention now for the IOM and P2P–Kaplan says this is a huge opportunity and we can put our OWN messaging out to the media . . . Hmmm . . . name in lights–ads for his clinic and his book; put out the SPIN with ‘our OWN messaging.’ Conflicts?? Bias??

    Second working group–Registry Data Sharing Bank–brought forward by KAPLAN–and just WHAT ‘definition/s’ will be used / will this data encompass? The grave OBVIOUS strong potential for contamination of data with OTHER THAN the complex disease of ME/CFS. And you have mentioned other concerns above re this, Jennie. Conflicts? Bias?

    Dr. Gary KAPLAN’s Clinic deals in pain and depression and across the board fatigue which is NOT ME/CFS. Similar to Dr. Jacob TEITELBAUM?? Conflicts? Bias?

    Dr. Gary KAPLAN–new member of CFSAC–talking @ meeting of ME/CFS in terms of SPECTRUM DISORDER–chronic pain/general pain/psychiatric/neuropsychiatric/depression/general fatigue–KAPLAN has a clinic as noted in the paragraph above. Conflicts? Bias?

    Others at CFSAC meeting responded–ME/CFS is the OPPOSITE of Spectrum Disorder. As for me–I am glad that KAPLAN is NOT my ME/CFS doctor.

    Is there a KAPLAN/WESSELY connection ?? Conflicts? Bias?

    Dr. Gary KAPLAN’s book called TOTAL Recovery — Solving the Mystery of Chronic Pain and Depression.
    http://www.kaplanclinic.com/books/total-recovery/

    Dr. Simon WESSELY–“Patients with unexplained pains should be seen by a mental health expert alongside a physical specialist because they are just as likely to have a psychiatric disorder, the new head of Britain’s psychiatrists says.”
    http://www.thetimes.co.uk/tto/health/news/article4126073.ece JUNE 21, 2014
    http://www.mecfsforums.com/index.php/topic,20507.msg162978.html#msg162978

    Soo–to compare the IOM process–‘slick trick, CFSAC; nice try.’ But ya didn’t fool anybody!

    Although you wouldn’t dare!! — A representative of Gulf War Syndrome would have been the equal comparison to ME/CFS and the IOM process–NOT IOM/Epilepsy. Bring ‘a witness’ from GWS into the CFSAC meeting–grill them and have a GWS representative give evidence and testimony @ the CFSAC meeting :). GWS patients/advocates and ME/CFS patients/advocates would love that :). HEY–@ trial–the defense can bring in witnesses too!!

    IOM is completely DESTRUCTIVE to the GWS and ME/CFS communities!!!

    Dr. N. LEE–also wanted a 3rd working group–How to Move Forward (with) IOM and P2P. She spoke to this . . . and then either forgot about it or . . .

    The open discussion with open mic at the end–seems it ‘just evolved’ as an opportunity since there were hardly any people left at the meeting–Dr. N. LEE sought to seize upon and USE this time — she was having tea with the advocates–(perhaps she could schmooze and make some headway there). We can talk (no quorum)—BUT — NO need to tell the Secretary of what is being said. Ummm–a lot of ‘Freudian slips’ at this CFSAC meeting!

    Very true, Jennie, it is the ongoing serious legitimate scientific and policy concerns we have– culminating in the HHS SHAM of the IOM and P2P against the biological truths of ME/CFS . . . more than valid reason behind the angst.

    AND–Mary Dimmock ALSO @ open mic additionally pointed out–It is NOT just the advocates against the IOM–it is the ME/CFS Experts and Researchers who saw the problems with the redefinition of ME/CFS by the IOM committee–THEREFORE, the ME/CFS Experts and Researchers asked directly to HHS Secretary Sebelius for a STOP to the IOM contract–adopt the CCC. IGNORED! DENIED!! — Soo–is there any question AT ALL about the agenda of HHS/NIH/CDC to BURY ME/CFS?.

    I dunno . . . Dr. Anand PAREKH, Deputy Assistant Secretary–are you really completely oblivious to the REAL story/politics and LIES set out to bury ME/CFS patients via the IOM contract and P2P ‘jury model’ in the great country of the U.S.A. ?

  5. Carrie
    June 25th, 2014 at 00:11 | #6

    Thanks, Jennie, for sharing this information.

    With all due respect to Dr. Friedberg, “making lemonade” is demeaning, and it has never worked in the past. Let’s not forget the NIH works for the taxpayers. If they require us to bow to them, they are acting out of order.

    I understand what he is saying, play nice and maybe they will be more likely to act in good faith; however, it has NEVER played out that way.

    Accepting less than we deserve in lieu of addressing scientific and policy concerns is not an option.

    On the upside, yea for Dr. Fletcher, Dr. Montoya and Mary Dimmock.

  6. Ren
    June 25th, 2014 at 05:48 | #7

    Various thoughts: I share Ess’ concerns re Kaplan’s conflict-of-interests. Does “nothing to fear” mean P2P lends itself nicely to Kaplan’s business, his medical guruhood? Hasn’t he already figured out “the” answer? Isn’t he already selling “the” cure?

    (And fear – angst? Don’t worry your pretty, little heads; We’re doing this for your own good.)

    Friedberg’s “make lemonade” recommendation brought to mind the “drinking the kool-ade” idiom; NIH: “Lemonade-flavored kool-ade, anyone?” Advocates/patients: “None for me, thanks. I’m full.”

    Good to hear Krafchick, Fletcher, and Dimmock’s responses – their identification of “yes-man-ism.”

    The difference between IOM/HHS’ interaction with the epilepsy community (very good to hear) vs the ME/CFS community is very telling. The ME/CFS community is like a dog that NIH kicks when no one’s looking. Then they say, I don’t know why that dog acts that way. She’s always been difficult.

    And I recommend medical professionals interested in Wessely’s hypothesis investigate and document the widespread abuse experienced by patients at the hands of government, insurance, and medical personnel. The terms gaslighting, scapegoating, and medical authoritarianism come to mind.

    Onward against the fait accompli. “Three things cannot be long hidden: the sun, the moon, and the truth”…

    • Jennie Spotila
      June 25th, 2014 at 10:11 | #8

      Yes! I agree with you and Carrie that “make lemonade” is offensive (although I will give Dr. Friedberg the benefit of the doubt that this was not his intention). Making lemonade, quite frankly, is WHAT WE HAVE BEEN DOING FOR THIRTY YEARS. Sorry for shouting, but table scraps and lemonade is what we have endured. It is time to move on. It won’t happen overnight, and it is highly likely that IOM and P2P will produce reports that are at best vaguely helpful. But we must start moving in the right direction.

      It is time to stop putting the onus on patients for being too difficult or crazy, or making us responsible for the low number of research applications. I would like to see everyone put on their big boy/girl pants and actually start solving the problem.

  7. Ess
    June 25th, 2014 at 13:35 | #9

    I don’t see it necessarily as shouting–I see it as emphasis–CAPS is the vehicle (without access to bolding, italics and underlining).

    Problem solving–yes–problem with that–HHS/NIH/CDC–NOT what this is about ‘for them.’

  8. Carrie
    June 25th, 2014 at 16:10 | #10

    Ren, your dog analogy describes the situation perfectly!

    I agree with you, Jennie, and the media push concerns me, too. This is where they choose to start being proactive? Red flag!

  9. kathy d.
    June 25th, 2014 at 22:35 | #11

    Everyone has been “playing nicely” with this disease for years. Where has it gotten us? Yes, we’re all for making statements and declaring what living with our disease is really like, and asking for consideration of our statements and appeals — and looking at the scientific evidence that has been discovered by private and/or university studies and investigations. But not by the government!!!

    Playing nicely did not help people with HIV and AIDS when people were dying of this disease in droves. It was when their organizations, especially ACT-UP pushed the envelope, carried out actions and got into the media that the government got nervous and then began to do real work to find that disease’s cause and treatment.

    I realize we can’t do what ACT-UP did, the ill activists and their supporters, but we are doing what we can through social media, testimonies to various committees and meetings, speaking to media people, having a few allies in the media and doing what we can.

    It will probably take more to move the government now as there are cutbacks in scientific and medical projects, programs and research, as in Medicare. And the government is not inclined to be pro-active.

    We need an advocate in Congress, as women in the military found one in Kristen Gillibrand.

  10. Patient
    June 26th, 2014 at 03:35 | #12

    CFSAC Written/Public Comment

    Eileen Holderman

    June 17, 2014

    (Note: Below is my written comment which contains variations/edits from my public comment because HHS imposed severe time restrictions on speakers during the CFSAC Meeting)

    Good morning. My name is Eileen Holderman – I’m an advocate for ME, GWI, andother neuroimmune diseases.

    Welcome to the new Committee Members, especially the new Patient Advocate. I wish all of you the very best going forward. Sometimes it’s important to look back to see what stands in the way of moving forward.

    For the past 4 years, I served as the Patient Advocate on the CFS Advisory Committee; was Chair of 2 Subcommittees; and was a member of the Leadership Committee.

    The Leadership Committee helps to set agenda for CFSAC Meetings. About 2 years ago, we managed to get the critical issue of case definition on the agenda.

    After, in October, 2012, CFSAC made a recommendation to convene a workshop using only ME/CFS experts (researchers, clinicians, advocates, and patients) to reach a consensus on a research and clinical case definition starting with the Canadian Consensus Criteria (CCC).

    Thereafter, in Subcommittee Teleconferences, HHS began to hijack CFSAC’s recommendation and impose their will. Committee Members objected to all the changes HHS tried to make to our recommendation. In my Subcommittee for Education, Patient Care and Quality of Life, HHS began tampering with our recommendation which led to conflict. In Jordan Dimitrakoff’s Subcommittee for Research, which I attended as a guest, similar contention arose when Committee Members sought information about the NIH’s Evidence-based Methodology Workshop (EbMW), now named the Pathway to Prevention (P2P). Many of us asked why another HHS initiative, that in part was to address case definition, was needed – because we just made a recommendation to convene a workshop to address case definition. We expressed concerns about the NIH P2P such as: costs, timelines, the use of non-experts in ME/CFS, no patient input, and no transparency. Soon after, Jordan Dimitrakoff permanently shut down the Research Subcommittee.

    Next, 3 CFSAC Members received phone calls from the Designated Federal Official (DFO), who used intimidation tactics and the threat of eviction from the Committee for expressing our views – the very thing we were called upon to do when we took the official pledge to serve.

    Then I was removed from the Leadership Committee, which resulted in no patient input into the CFSAC agenda for the past year and a half.

    During the May, 2013 CFSAC Meeting, I publicly disclosed that I and 2 fellow Committee Members were threatened. HHS did not take the allegations seriously – but advocates did. Advocates sent a letter to General Counsel, with over 40 signatures from independent advocates and advocacy organizations, asking for an investigation. Months later, Dr. Howard Koh, Assistant Secretary of Health, sent a letter in reply which the ME community viewed as completely dismissive.

    While I don’t wish to speak about the personal effects of the threats, I want to talk about it as it applies to how HHS continually dismisses and obstructs the good work and authority of CFSAC.

    HHS’s mission to silence Committee Members is indicative of how they have operated in secret, with an iron will, and with disdain toward the ME community.

    Instead of implementing CFSAC’s recommendation for a case definition workshop with ME/CFS experts, HHS embarked on an aggressive campaign to redefine ME/CFS and enlisted the aid of NIH, CDC, HRSA, ARHQ, and The Institute of Medicine (IOM).

    HHS did this in spite of mass opposition to their 3 initiatives (IOM, P2P, CDC Multi-site Clinical Study) from the ME community such as:

    * 50 ME/CFS researchers and clinicians signed the Expert’s Letter urging HHS to refrain from reaching out to groups such as the IOM to redefine ME/CFS using non-experts, because they reached a consensus on a research and clinical case definition called the Canadian Consensus Criteria (CCC). The experts also urged HHS to adopt the CCC in all Government agencies.

    * Over 170 advocates wrote a similar letter as the experts to HHS.

    * Nearly 10,000 patients, caregivers, advocates, and medical professionals signed 2 petitions stating objections to the HHS/IOM Contract and urged HHS to adopt the CCC.

    * Advocates appealed to Congress with calls and meetings on Capitol Hill.

    * An advocate-attorney filed a law suit in US District Court against HHS and NIH for non-compliance with a FOIA request pertaining to the IOM Contract. That same attorney filed legal complaints with the Office of the Inspector General for IOM’s organizational conflict of interest and related legal issues.

    * Attorney-advocates filed FOIA requests pertaining to the HHS/IOM Contract.

    * Advocates participated in radio, TV, and online interviews with the press about HHS’s plans to redefine and rename ME/CFS.

    * Advocates demonstrated in San Francisco and Washington, DC to protest the HHS/IOM Contract.

    * Advocates from the ME/CFS community collaborated with advocates from the Gulf War Illness (GWI) community because of similar concerns with the VA/IOM reports.

    * Advocates submitted a position paper, wrote articles, blogs, and opinion posts on Internet forums to protest the HHS/IOM Contract.

    HHS has not listened to the 50 ME/CFS expert researchers and clinicians who sent the letter to Secretary Sebelius; nor have they listened to the advocates, patients, caregivers, or stakeholders.

    HHS’s mission is to control the message – they decide who can speak and who is silenced, who is on the Advisory Committee and who is off the Advisory Committee, what information they will divulge and what information they will hide.

    HHS’s mission is to redefine ME/CFS with yet another broad, erroneous case definition, which will include countless people who do not have ME/CFS, so they can recommend CBT, GET, and anti-depressants, and so they can bury the scientific, biomedical evidence of ME/CFS. HHS will then not have to fund research into this biomedical disease or fund clinical trials or pay for long term disability and other Government entitlements. Once HHS develops their new definition and name for this disabling, neuroimmune disease, they will embark on their next phase of (mis)educating the medical and scientific communities, the press, and the general public. HHS is acting in bad faith toward the ME community.

    Last December, during a CFSAC “webinar,” I thanked many people in the ME community, especially my fellow Committee Members, the 50 ME/CFS experts, and the advocates. So, I will end with a special acknowledgement of one advocate, Jeannette Burmeister, whose intelligence, resilience, and courage inspires me and other advocates in our movement to help the 17 million worldwide suffering from ME.

    Thank you.

    • Jennie Spotila
      June 26th, 2014 at 09:43 | #13

      I am happy to have Eileen’s comments posted on this blog, but I hope it has been done with her permission. I’ve let the comment through on the assumption that Eileen has given permission for her remarks to be posted. If that is not the case, I will remove them at her request.

  11. Anne Ö
    July 16th, 2014 at 13:50 | #14

    Jennie, thank you as always for your excellent reporting.

    I want to bring something up: how hard it is to stay hopeful when the bad news just keep coming about how the authorities are dealing with ME/CFS. I am not one for conspiracy theories, I would want to believe that the failure of the public authorities in all countries to deal successfully with ME/CFS is due to ignorance rather than malicious intent – and therefore can change – but when the news of HHS, CDC and NIH taking the wrong turns keep coming so regularly, it’s hard to keep that belief.

    When reading the posts on this blog, when seeing Eileen Holderman’s comment to the CFSAC, when hearing about the statements of Elizabeth Unger at the CFSAC meeting that she feels PEM probably should not be a mandatory symptom in a new case definition (if I understood correctly), I feel it’s really hard to not think these authorities are actually willfully acting to thwart progress in the ME/CFS field.

    As I said, it’s not in my nature to hastily jump to such conclusions, I am one for cooperation, factual discussion and dialogue, but when faced with too many destructive decisions on the part of those appointed to help us, I have to wonder about their motives and direction.

    And I despair.

    • Jennie Spotila
      July 16th, 2014 at 14:42 | #15

      I understand what you mean, Anne. I regularly give myself reality checks – asking what we know versus what we might suspect or fear. I agree that it gets harder to believe that all we need is a calm discussion of facts over a cup of tea to clear up this mess. And I find myself battling despair and burnout way too often these days.

  12. Ess
    July 16th, 2014 at 19:39 | #16

    Human nature prefers to believe in ‘the goodness’ . . .

    Reality is–it is NOT all goodness. Case in point and a REALITY CHECK–30 years of this–and currently all AMPED up against ME/CFS! Ready set for ME/CFS to be buried by HHS-NIH-CDC, IOM and P2P.

    Eyes WIDE open!! There are NO excuses. This has been and is a 30-year long conspiracy!

  13. Chris Heppner
    July 17th, 2014 at 14:36 | #17

    I find Eileen Holderman’s story completely persuasive. I think the only way out is for someone to contact and persuade Snowden to do his magic and open up the internal messaging of all major components of HHS and give them wide publicity. We have that letter from Straus to Fukuda–good evidence–but we need more. Of course the same kind of thing is happening on many fronts, including the dangers of RF radiation, pressed home again by Martin Pall’s latest work. And Monsanto’s world wide campaign. And fracking, and…. and. We are in an increasingly nightmare world, and there seems no credible way out unless more of the population somehow wakes up and finds real information, and I don’t see that happening on a wide enough scale. We are just one part of the roadkill of the contemporary form of government sponsored and sponsoring capitalism.
    Chris

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