NIH Attitudes Affect Policy: A Story In Two Parts

The current situation for ME research at NIH is still a problem, despite the fact that the RFAs will increase spending on ME by a significant percentage. I say this based on two things: what the ME field needs to catalyze research and how NIH attitudes about ME are interfering with that. There is a toxic stereotype in play: that people with ME are responsible for the current situation. I believe that as long as that stereotype is held by people in positions of power, we face a slow and uphill battle to obtain the research funding that is so desperately needed.

Part One: You Have Disappointed Me

In November 2016, Carol Head and Dr. Zaher Nahle of the Solve ME/CFS Initiative secured a brief meeting with NIH Director Dr. Francis Collins. They reported that it was a positive discussion, but emails I obtained through a Freedom of Information Act request reveal NIH’s intention to manipulate the encounter.

This meeting with Dr. Collins occurred in the immediate aftermath of Dr. Edward Shorter’s controversial talk at NIH. The ME/CFS community had expressed outrage after learning that NIH had invited Dr. Shorter, because he espouses the disproven psychosocial theory of ME and demeaning views of people with the disease. The talk proceeded over our objections, and all sides were still smarting from the controversy when SMCI met with Dr. Collins.

The emails show that Dr. Koroshetz, Director of the NINDS and Chair of the Trans-NIH ME/CFS Working Group, was angry about the controversy. In responding to Dr. Collins’s request for updated information on the RFA and intramural study, Dr. Koroshetz wrote:

I was pretty upset with Solve ME/CFS for making such a huge fuss over the seminar at NIH by the historian from Canada. If you can impress upon Carol and Zaher the importance of Solve ME/CFS joining with the research effort and not inciting mistrust at every twist and turn that would be helpful. Mainly I am worried that researchers will shy away from studying ME/CFS if they are subject to one attack after another due to the strong biases that are out there. Funding could be for naught.

This email blew my mind because it is loaded with . . . I was going to say inaccuracies, but that is too mild a term. First of all, SMCI did not “incite mistrust.” NIH did that all by themselves when they extended the invitation to Dr. Shorter and then offered only a vague not-quite-an-apology. Second, Koroshetz is perpetuating the myth that no one will want to study ME if they are “attacked.” I guess that’s why no one studies autism or HIV/AIDS, because those activists are pretty rowdy. And the “strong biases that are out there are best described as PACE-Gate and the psychosocial theory of ME. Perhaps Dr. Koroshetz and others should be more concerned about the biases and attacks directed at people with ME, instead of biases held by people with ME.

Dr. Collins did not immediately buy Koroshetz’s take on the controversy. He responded:

Walter and Vicki, did Solve ME/CFS specifically stir up trouble for Dr. Shorter? I got a bunch of e-mails about this from ME/CFS advocates, but didn’t see Solve ME/CFS fingerprints on there. I certainly agree that this kind of behavior is counterproductive to the collaborative effort we are trying to create.

When other disease groups protest disproven, antiquated and misogynist views that interfere with scientific research, how is that perceived? Are they “stirring up trouble”? Are they being “counterproductive”? As I said last November, it is unthinkable that NIH would offer a platform to someone who spoke about people with HIV/AIDS the way Shorter talks about people with ME. Yet NIH seems to think that we are the problem, and if no one wants to research our disease then we just have ourselves to blame.

In response to Dr. Collins’s question, Dr. Vicky Whittemore forwarded him (without comment) SMCI’s November 7th email asking advocates to denounce the Shorter invitation. That email actually asked advocates to contact members of Congress, by the way, not NIH. Advocates had started emailing NIH on November 3rd. But Dr. Collins replies:

Got it. I will express our disappointment to the Solve ME/CFS leadership.

This email discussion between Collins and Koroshetz repeats multiple familiar talking points: ME activists should not have made a “huge fuss,” and now scientists will “shy away” from studying this disease because of “one attack after another due to the strong biases that are out there.” And therefore: “Funding could be for naught.” I know I am not the only person who is sick of this stereotype, but let’s review:

  1. It is appropriate to protest NIH’s invitation of a speaker whose views are not grounded in science, and who demeaned and denigrated both people with ME and the National Academy of Medicine.
  2. Researchers are not subject to “one attack after another.” This is a myth that has been grossly exaggerated and disproven on prior occasions.
  3. The “strong biases” that have been “counterproductive” are the outdated, disproven, and belittling views held by Dr. Shorter and other adherents to the psychosocial theory of ME/CFS.
  4. Research funding is not “for naught” unless that funding is wasted on previously disproven hypotheses.
  5. People with ME are not responsible for the lack of interest in ME research.  The blame lies with CDC for focusing on the symptom of chronic fatigue, instead of the disease of ME, and contributing to the false but dominant psychosocial narrative. The blame lies with NIH for refusing to take the steps necessary to attract and fund research for many years.

A circle with a sad face and the caption “Blame token; it’s your fault.”

I’ll speak up for the people in the back: THIS IS NOT OUR FAULT. But according to Drs. Koroshetz and Collins, it is. Thus, Dr. Collins promised to express NIH’s disappointment to SMCI.

I have a great deal of respect for Dr. Collins, but I am not sorry if I (or ME advocates) disappoint him. I am much more concerned about the disappointment that I and other people with ME must face each day that we have to live without appropriate diagnosis, care and treatment. I am more concerned about the disappointment of the ME research community that NIH will fund only two or three research centers, despite all the data that point to the need for much, much more. So if Dr. Collins or Dr. Koroshetz are disappointed by the way that people with ME are fighting for their lives, I can live with that.

But the problem is not whether Dr. Collins is disappointed in me, or anyone else. The problem is that real harm is caused by perpetuating the lie that people with ME are to blame for the sins of CDC and NIH.

Part Two: Bad Advocate, No Cookie

ME social media lit up earlier this month when Dr. Koroshetz said (on video) that ME research funding needed to be ten or twenty times its current level. That is a stunning admission from the Director of the National Institute of Neurological Diseases and Stroke, but the full context of his comments show the harm of blaming people with ME.

Dr. Koroshetz made these comments during his June 9, 2017 presentation to the Advisory Council for the NIH Director (beginning at 2:25:00 in this video). He began by describing NINDS’s efforts on ME/CFS, specifically the intramural study and the RFA for research centers. Dr. Ian Lipkin, who sits on the Advisory Council, said he was “not as excited about the investment in ME/CFS” because the center grants come down to about $800,000 per year in direct costs for research.

Dr. Koroshetz responded:

I think the goal was that this was not the solution but the seed to grow the research that could then come in through regular mechanisms or else to kind of add on centers so we can kind of move the field across. I think we could find three, three or four centers, that’s not gonna do it. We need probably twenty across the country.

A calculator reading “Not Enough” sits on a pile of money.

Understand what Dr. Koroshetz is saying here. He admits we need twenty centers, but that he’s only investing in the “seed to grow the research.” To Dr. Koroshetz and others, this seems like a reasonable strategy. The field is small and could not create twenty centers this year (although it could probably create ten). So by investing a smaller amount, NIH plants seeds that years down the line could grow into twenty centers.

The problem is that the reason the field is so small is because there has been no money in it for more than thirty years. The field is small because of the strong biases against people with ME and the researchers who work on it. NIH helped create this situation through grossly inadequate funding and past grant review panels comprised of non-ME experts. Now that it admits the need, NIH should be thinking creatively on how to solve this problem quickly. At the current pace, it will be decades before this poorly funded “seed” will produce fruit.

Dr. Lipkin then raised the issue of the small amount of funding offered by the RFA collaborative center grant:

Dr. Lipkin: But $800,000 for a center [after administrative and collaborative costs] is – it’s a challenge. . . . it’s far less than a R-01 for each of the investigators. I just – it’s a problem.

Dr. Koroshetz: No one ever comes to me and said they gave me too much money. (laughs) But I think you’re right, we’ve gotta move this field it’s gonna take a lot of money. The budget’s gonna have to be ten or twenty times what it is now.

This is a remarkable statement. I don’t think we have ever heard such a public and specific admission by NIH that their ME funding is falling so far short of what is needed. From the context of his statements, it appears Dr. Koroshetz means ten to twenty times the present RFA budget of $6 million per year. That translates to $60 to 120 million per year, at least. While still far from commensurate with disease burden, that level of funding would certainly support robust research into pathogenesis and treatments.

The salient point is not, “Hurray, Dr. Koroshetz admits we need $120 million a year.” The takeaway message for people with ME is, “Dr. Koroshetz admits NIH needs to do 20 times better, but nothing is changing.” I’m trying to think of another context where a leader would say we’re falling twenty times short and then do nothing to try to make up the gap. If a company needs to increase its sales by ten or twenty times, you can bet they do something. If a government had a budget shortfall of that magnitude, you can bet they would raise taxes at the speed of light. And remember that Dr. Koroshetz – who is Chair of the Trans-NIH ME/CFS Working Group – chose to kick in only $2 million per year for the RFAs. This low investment from the Chair was not going to be exceeded by any other Institute, thus guaranteeing the smallness of the RFA.

I’m certain that Dr. Koroshetz and Dr. Collins believe they are taking action. But they are taking action that is grossly insufficient for the public health crisis of ME. Dr. Koroshetz said the effort was to “bring new people in, start research going, and hopefully then populate out further to allow folks to submit really high-quality grants to NIH”. This takes time. And we do not have the time. We have hundreds of thousands of Americans who remain confined to their homes and beds for years without end.

In his presentation to the Advisory Council, Dr. Koroshetz also commented on the ME community. He said NIH is:

trying to work with the community which feels terribly ignored and quite angry over this over the last decades but I think we’re making definite inroads there and getting the trust re-built.

A comic book image of a man and woman. The word “lies” is repeated between them.

And here we go again: We’re angry. Just like we make a “huge fuss” and “stir up trouble,” which is “counterproductive.” We are the problem, according to this view.

I reject that view completely and wholeheartedly. People with ME are not the problem. The failure of the research and medical enterprise to take care of people with ME is the problem.

As long as people with ME are accused of being angry and counterproductive, of stirring up trouble and chasing away good scientists, then no one else needs to be accountable for the current situation. If there isn’t enough funding, it’s our fault. If there aren’t enough scientists, it’s our fault.

Casting people with ME as angry while simultaneously blaming us for the current situation does more than deflect blame from NIH. It’s a pretty effective manipulation technique. “You’re angry because there is no funding, but there’s no funding because you are angry.” Such circular reasoning is a trap. Asking quietly and nicely does not force change, and demanding change reinforces the stereotype and status quo.

For more than thirty years, NIH has given people with ME every right to be angry. And I can tell you, having read hundreds of emails sent by the public to NIH officials, we are actually restraining our anger quite well. Describing us as angry creates the impression that we are flooding NIH with vitriol. I have previously fact checked that, and the same was true during the Shorter controversy. ME activists might be vocal, but we have nothing on groups like ACT UP or the heroes of ADAPT.

The longer this frame persists, the more it is reinforced. I suspect the frame is so ingrained at NIH that most people don’t even realize they are looking at us through this lens. It is so ingrained that a few strongly worded emails are enough to make Dr. Koroshetz “pretty upset” with us. Every time that happens, it reinforces the frame still more. However honestly Dr. Koroshetz and others believe in their perception of us as angry, however confident they are that we are keeping scientists away from research, this stereotype remains a serious problem.

Why? Because as long as it is our fault, it is not their fault. Because if it is our fault, then the slow strategy makes sense. It takes time to make “inroads” with such a self-destructive community. By gradually dripping money into the bucket, and letting things progress the way they would have if we had started thirty years ago, then no one has to make waves or spend political capital to fix it.

But people with ME have been abandoned. We have been left to fend for ourselves. Damn right, we’re angry. We have to be. It helps us survive, and it has led to change.

Dr. Collins did not simply wake up one morning and decide to do a little more for ME research. NIH’s current commitment was the result of years of advocacy, and calling attention to the state of the science, and demanding an RFA. After the NAM report, and the P2P report, and the Millions Missing protests, and Brian Vastag’s public letter which was retweeted by pretty much every single science reporter in the United States — after all that, NIH decided to invest a little bit more in ME research. An investment that Dr. Koroshetz admits is minuscule compared to what is required.

At the Advisory Council meeting, Dr. Koroshetz gave all the credit to Dr. Collins, saying:

Myalgic Encephalomyelitis and Chronic Fatigue Syndrome is an area that’s really been completely under-investigated across the country, and Francis [Collins] was really courageous and went out there and said that NIH is gonna change that.

Courageous: a word that means “not deterred by danger or pain; brave.” I don’t see how Dr. Collins pushed through pain or even spent much political capital to help us. To me, the people truly brave and undeterred by pain are the people with ME (and their families, friends and allies). I know a mother of two young adult sons with ME; she is brave. I know another mother who has not disclosed her diagnosis to most of her family; she is courageous. The executive with ME who keeps working is undeterred by pain. The woman who withdraws from her doctoral program with just her thesis to complete is brave in the face of that disappointment and loss. The researchers and clinicians who labor on shoestring budgets are not deterred by the potential danger to their careers. I am writing this blog post, undeterred by the pain I am already experiencing and the post-exertion crash that will follow. The advocates who sacrifice their health and privacy to speak on behalf of all of us are courageous.

Dr. Koroshetz said NIH was “getting the trust re-built.” But how much trust can exist if people at NIH think we are fighting for our lives too loudly? How much trust can exist given the way Koroshetz and Collins blamed SMCI for “stirring up trouble”? How much trust can exist if the response to this public health emergency is a strategy that will take years for tangible scientific progress? How much trust can exist when NIH blames us for the poor funding situation, when they are the ones who control the purse strings?

The bottom line: this perception that people with ME are unreasonably angry and wildly attacking researchers feeds the perception that “Funding could be for naught.” And if there is a perceived risk that funding could be useless, no one is going to invest that funding. This perception places the blame and burden of proof on people with ME. If we do not behave in accordance with Drs. Koroshetz and Collins’ expectations, then we will not be rewarded with funding (as if they have ever rewarded any type of our behavior with funding). Bad advocate, no cookie.

This stereotype leads to and justifies NIH’s current strategic and policy approach to ME: risk as little as possible, cautiously drip in a little more funding, and wait patiently for something to change, some day, far down the road.

Are you ok with that?

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45 Responses to NIH Attitudes Affect Policy: A Story In Two Parts

  1. Denise says:

    “The bottom line: this perception that people with ME are unreasonably angry and wildly attacking researchers feeds the perception that “Funding could be for naught.” ”
    Unreasonably angry????

    For decades
    this disease has been WOEFULLY underfunded,
    patients have been stigmatized,
    and NIH, CDC, etc continue to perpetuate the myths regarding this disease and how scientists are treated by blaming us.
    NOT ACCEPTABLE!

    My anger is NOT unreasonable. Nor is it unreasonable for me to speak up.
    It is in fact entirely reasonable for me to speak up loudly and repeatedly.
    I am fighting for lives – especially those of my sons!
    I am fighting for dignity for all of us – and I am fighting for the dignity of research funding commensurate with disease burden!

    • Lolly Vann says:

      Thank you Jen.

    • Lolly Vann says:

      Thank you Jen, yes we have a right to be angry. And yes it might be easier for them to do their job as they perceive it if we went back on the shelf like good little samples. I guess there are many emotions we can stir into this …. but anger is not where I want to spend spoons right now. For the record Carol Heads office said we she not go to NIH to protest Shorter in advance. I did not get the scoop verifying location and time of lecture until I arrive on campus. Once there I was treated well and offers were made to continue the conversation which we have not persued.

  2. BOBBI ausubel says:

    Thanks for writing this, so clearly. So clearly. And now what do we do? Keep on moving? Have you sent this article to Koroshetz? to Collins? please do.

  3. Jane Tatum says:

    Heck no I’m not okay with that!…for myself, all ahead, and all behind me. I’m 25. I got sick between 13-14 yrs old when this slammed me. I had a few years my late teens and early 20’s when I looked like a “normal healthy person” from the outside. I could be more functional and active, with illness, bumps in the road, and naps after school/tutoring work. Now, I’m largely homebound after a relapse/re-onset in 2014. Almost every day I am somewhat in disbelief that this is my life…not at all what I planned or envisioned! I’m an only child w/ a little bit older (but awesome) parents. As soon as I got my education I planned to work a year or two to first make their lives easier from here on out. If things change, I could still have a husband and family (I can’t bear the thought of this not happening and looking back on what could have been had the HHS: NIH, CDC etc really cared and acted appropriately). My hope is based mostly in my faith, not my government and health system that have miserably, unbelievably failed me. It’s still hard to comprehend sometimes. This is a great post! Preach, Jennie! 👏👏👏 This post is 👌 and 🔥.

    • Jennie Spotila says:

      Jane, I am so sorry to hear about what has happened to you! I really hate that people are struck down in their teens, before you even have a chance to live. I sincerely hope that you will improve. Stay strong!

  4. Rivka says:

    To answer your question at the end of your blog post: No, I am not OK with that! I have been very very sick for 27 long years. Much of it bedridden, as I am today. I am ready to fight — even though every bit of advocacy I ever do takes a huge toll on my health. Thank you for a well written, truthful, motivating post. — Rivka

    • I’ve been sick for just as long; got sick at an American Physical Society meeting in the week of November 5th, 1989, in Anaheim, California.

      I keep wondering if there are others in my cohort.

      They were spraying for the medfly at our hotel.

  5. I don’t understand it – AIDS activists were angry and had every right to be angry at the way they were marginalized in the first place, and AIDS was blamed on homosexuals (the canaries in the coal mine for HIV) in the second.

    I hate to say it, but what gave them currency was that so many people were affected rapidly BY the gay victims, that the death rate could not be ignored, no matter how hard they tried. Yes, it helped to get attention when straight people and children were becoming affected as well, and it became politically possible for all those who jumped on the bandwagon (you would have thought our gay brothers didn’t even exist, compared to the ‘poor straight people’ (I’m leaving race out of this for now)). It’s a disgrace – and we’re ALL still paying for it. But those who died are our heroes, who forced the establishment to stop ignoring them; and way too many died. (cf. Ebola for something recent – no interest until it hit a few white American researchers/rescuers; then bam, solution).

    We’re NOT DRAMATIC ENOUGH – not too dramatic and activist.

    PS This is amazing research on your part. Is there a way you want the information spread? I’ve asked before, and you prefer not to be reblogged, but an excerpt or two isn’t going to get as many people to read this post as should.

    • Jennie Spotila says:

      You are welcome to use excerpts with attribution and a link back. This post was an incredible amount of work, and I make zero money from this blog. But views and readership DO make a difference, so that’s why I prefer excerpting rather than wholesale reblogging.

      • Anonymous says:

        Jennie – thank you for all of the work you put into this post (and each of your posts)!

  6. jimells says:

    “trying to work with the community which feels terribly ignored and quite angry over this over the last decades but I think we’re making definite inroads there and getting the trust re-built.”

    I’ve said it before and I’ll say it again: they are running a Public Relations campaign, not a research program.

    And it does seem to be working. In the UK, the wheels have fallen off the BPS Brigade’s wagon. They are under attack on many fronts, and their strategy of stonewalling and disparaging patients has failed miserably. They still think that swatting a swarm of bees will make them go away.

    Meanwhile, in the US, the NIH and CDC have figured out it takes only a small amount of smoke to calm angry bees. They have successfully built a strategy of doing just enough to pretend there is a research program while actually doing almost nothing.

    I’ve noticed NIH doesn’t directly insult patients even though they despise us as much as the UK psychobabblers. Instead they hire fools like Shorter to do their dirty work. And they can always count on Mad Dog Coyne to attack advocates if they get too loud and say mean things about Our Dear Director.

  7. Cecelia says:

    Very clear article–many thank yous!

    This behavior is an example of neurotic psychology in which feeling important, feeling good, feeling righteous and feeling justified are more important to individuals than being honest and responsible. Here is the reason that we have such crazy leadership in many areas and not only in this field. The results are always destructive and defeating in the long run though there are short term gains for those who cut the ethical corners. What we need are honest, courageous, scientifically sound leaders in this scientific field to do the necessary work so we can collectively move forward.

  8. ahimsa says:

    Jane Tatum posted – “This is a great post! Preach, Jennie! 👏👏👏”

    Ditto! That was exactly what I was thinking but Jane beat me to it.

  9. Samuel Wales says:

    Well done.

    The above sounds like MEGA in the UK. Why such a close resemblance across the pond? The same talking points, the same moral reversal and projection, the same lies. I will take it as coincidence.

    We are even hearing the same “for naught” plaint that the MEGA project trots out, right down to the dark intimation that it might have a double meaning (one for us and one for them).

    Failure to get back on a comfortable status-quo track, as an example, is not a “nought”. We call that “progress” and so should the NIH.

    If we meekly accept Shorter and Walitt and the endless parade of anti-do-the-obvious-right-thing clowns and profoundly insulting levels of funding, then their plans are “for nought”? Really? “Wrong side of history” comes to mind. Has the PHS lived down Tuskegee?

    The NIH has excellent people, but they labor under problematic leadership.

    In conclusion, writing congressmen and senators, including directly and openly by all of our charities, is precisely the right thing do do.

    .

    • Samuel Wales says:

      two corrections to my comment:

      1] “If we meekly accept” -> “If we do not meekly accept”

      2] “naught” not “nought”

    • James says:

      Avi Nath will attend CMRC in September where talk of Edward Shorter would not cause insult but when IiMEC 2017 met in June NIH sent Vicky Whittermore may be nothing at even pure coincidence.

    • jimells says:

      Samuel,
      It is not coincidence. The insurers who own the UK BPS Brigade are in control of policy in the US as well. Unum, headquartered in the US, has a very long history of abusing claimants in the US as well as the UK. They have been forced by the US legal system to pay out over half a Billion dollars in improperly denied claims. [1]

      The connections between various insurers and the BPS Brigrade are well documented and not in dispute. In fact, the Gibson Inquiry (commissioned by the UK Parliament) called for a proper investigation of conflicts of interest more than ten years ago:

      “[There are] numerous cases where advisors to the DWP [Department for Work and Pensions] have also had consultancy roles in medical insurance companies. Particularly the Company UNUMProvident. Given the vested interest private medical insurance companies have in ensuring CFS/ME remain classified as a psychosocial illness there is blatant conflict of interest here.” [2]

      Sir Simon Wessely has been “consulting” with NIH at least since 1991, when he was a featured speaker at a conference sponsored by NIAID and NIMH (two units of NIH). Both he and Michael Sharpe were involved with developing the Fukuda criteria, published in 1994.

      As recently as 2009, Peter White was unpaid chair of a CDC committee charged with evaluating the CFS program. He nearly got into trouble when he
      neglected to mention his work with Scottish-Provident and Swiss RE on the Conflict Of Interest form. Lucky for him he has the right connections.

      Just to make sure UK researchers know who is buttering their bread, Unum established the UnumProvident Centre for Psychosocial and Disability Research at Cardiff University in 2004. Which, strictly by coincidence of course, just happens to be one year after the NIH quietly closed ALL THREE US Cooperative Research Centers.

      The main difference between US policy and UK policy is that in the US, government agencies are pretending to be our friends while stabbing us in the back, repeatedly, with a “Who Me?” look on their faces.

      In the UK, agencies don’t bother with pretending. They think they are protected by their arrogance and connections. That is not working so well anymore.

      I agree that the NIH is dead from the neck up. The policy of non-research will not change until NIH leadership is removed or they are forced to change by court action.

      [1] https://en.wikipedia.org/wiki/Unum#Legal_and_regulatory_issues
      [2] https://en.wikipedia.org/wiki/Controversies_related_to_chronic_fatigue_syndrome#Political

  10. Fern Mulholland says:

    Thank you for putting so much of your precious time and energy into this. As a person with M.E. for over 25 years, and presently home bound, so many emotions hit me as I read. The unfairness of it all had my heart drop from frustration and sadness. I know we cannot stop advocating, in whatever level M.E. lets us, but what will break through the bigotry and misconceptions? An expert on our disease is sorely needed in the NIH.

  11. Janet D says:

    This just makes me so mad! Do they think they’re building trust by asking and insulting unscientific jerk like Fred shorter to come talk at NIH and put it right in our face? They’re supposed to be scientists. Fred shorter does not represent science one bit.And do they think Ron Davis’s response to that which was extremely strong warning them that they were losing trust if they did that is coming from some unreasonable angry patient? Jennie, you are absolutely right about this and they are acting like out of touch, blind people with no compassion who are extremely self serving. It just makes me want to go into their offices and tell them how screwed up they are. They think they’re being so wonderful with their little grants, and here we all are suffering like crazy thousands and thousands of people. They act like our frustration is unwarranted and the cause of some kind of problem. What are they expect? They’ve ignored CFS for years and there’s so much suffering and they act like years and years more should just be fine and we should just calm down and wait while we suffer or watch our loved ones suffering. If this were a virus spreading across the country they wouldn’t talk like that when people were upset that the government didn’t do something. What a bunch of disingenuous ridiculous people! I wish I could convey my tone of voice in this message. Their attitude is really indefensible and arrogant, coming from people with power who don’t understand the people they’re supposed to serve.

    • Jennie Spotila says:

      “They’ve ignored CFS for years and there’s so much suffering and they act like years and years more should just be fine and we should just calm down and wait while we suffer or watch our loved ones suffering.”

      This is spot on, Janet. They seem to think they really are doing something that merits only gratitude from us. The only way that makes sense is if they don’t understand the suffering, and that time is of the essence.

  12. Magdalena says:

    Phenomenal! Brilliant job, well done! Infinite thanks for everything, as always <3

  13. Tiny Dragon says:

    Amazing and important post, Jennie. Thank you.

    What we face is, without question, prejudice, pure and simple. We are characterised by something that isn’t true – that we are disproportionately angry, and that we express that with such vitriol that it’s intimidating to researchers – and we are disadvantaged for that.

    As you’ve pointed out, there is plenty of anger, reasonable or not, in other health activist communities. None of them get penalised for it. Imagine some of the crap some researchers must get from, for example, AIDS denialists. Can you imagine if the NIH or another body then said, this is why we can’t fund HIV?

    Prejudice is a weird beast. I think people use it as a shelter in all sorts of ways – to feel superior, to not feel guilty, to be lazy, to manipulate. Those in power use it because they can. Until it becomes completely unacceptable to do so, they use it as an out wherever possible. Jimells makes a good point about the PR nature of the NIH’s approach. To some degree, public pressure and scientific evidence has made it untenable to keep the old ‘CFS’ paradigm, so they’re not as heartless as they were. But they hang onto that last bastion of prejudice that may sound reasonable and that lets them victim-blame us enough to let themselves off the hook.

    And they don’t realise that, however much they claim to believe this is a physiological disease, to continue to characterise a large, diverse group of patients as having some particular psychological defect (a supposed tendency toward unreasonable anger and vitriol) confirms that they still see us as having psychological pathology related to ME.

    I wish that the concept of prejudice and a concern to combat it would take off in a deeper, non-tokenistic way and be recognised in all its forms, not just attached to one issue at a time. There’s no learning from models of bias and discrimination in other areas, like racism or other disease prejudice like the HIV community had to suffer.

    • Jennie Spotila says:

      It is a self-fulfilling prejudice. “I think you are unreasonably angry, so I only gave you a little cookie crumb. Oh look, you are more angry. That just confirms my perception that you are unreasonable.”

      On several occasions, ACT UP had public funerals. There was even an attempt to hold one at the Capitol (but was short-circuited by an interaction with law enforcement). Do we have to bring actual bodies to NIH to get our point across?

      • Cecelia says:

        Yes, probably! I think the strategic response is to be more assertive and theatrically outrageous, rather than to be more timid, obsequious and polite–because all our years of politeness and patience have not won us the necessary funding, research or respect. The paradoxical answer to officialdom’s objection toward patient objections and assertions is to be even more assertive as patients.

  14. Tiny Dragon says:

    I just want to add that it’s horrible to make out that protesting Shorter’s appearance was “making a huge fuss”. What Shorter has written about ME patients is grotesque, as was the way he smeared the NAM’s impeccable, thorough report as “junk science” (and manipulative, to boot). Why are we expected to put up with this quietly?

    • jimells says:

      I doubt if Anthony Fauci (Director of National Institute of Allergy and Infectious Diseases) would call it “making a huge fuss”. He was hung in effigy during the AIDS protests. It’s in the AIDS movie “How to Survive a Plague”.

      These people are well-seasoned bureaucratic warriors. It’s a rough game to get to the top. And here they are whining about a few emails and phone calls from patient advocates who they consider to be nobodies. Are they still in junior high school?

      • cecelia says:

        This is what those “warriors” do: Blame their critics. Keep attacking, denigrating and distracting… Imply you have more important things to do, real science, serious business….We mustn’t be fooled or discouraged by these ploys.

  15. Claudai says:

    Thank you for your excellent and well researched blog post. Can I just add that in 2015, I wrote a blog post in response to one of Shorter’s outrageously contemptuous articles, smearing ME patients in ways that left me, and a lot of other academics and researchers flabbergasted. That was before the NIH invited him so there was no NIH-related ‘fuss’ but well-founded critique of Shorter’s deeply offensive conduct well before all that. I am at a loss to understand why it is so difficult to grasp why smearing ME sufferers should be tolerated by people who have been advocating for rigorous research for years, and why it is even remotely acceptable to demand they bow and scrape to authority. It is once again a blatant dismissal of patient perspective, self-empowerment and the whole, vital concept of voice. Professor Shorter, on the other hand, shamelessly uses his position of privilege and power to denigrate entire patient populations and others, including women. There is plenty of evidence out there as to this claim. Speakers are usually invited in their capacity of competent bearers of knowledge that will further a cause, research, science, the common good. I can but wonder what sort of knowledge the NIH was hoping to garner from Professor Shorter. This and many other questions are justified and not the belligerent ravings of unreasonable people. If anything, we have been reasonable for far too long. After all, it is our lives that are being wasted. Neither you nor I should have to put all this work into advocacy for which neither of us, as so many others, receive a penny. We have every right to demand courtesy and a place at the table without sneers and dismissal as if we are disobedient children in Victorian times. Thanks again, Jenni, for your work on this. I very much appreciate it. PS: I’m attaching a link to my blog post of early 2015, surely that cannot be regarded as an NIH related fuss, given its date. https://uttingwolffspouts.com/2015/02/26/hate-speech-is-not-knowledge/

    • Claudia says:

      PS: Apparently I’m unable to spell my own name correctly today, so apologies for having misspelt yours, too, Jennie 🙂

    • Cecelia says:

      Looking at this in terms of its story or bigger picture, I think Shorter is the goad to rouse us from any lingering naive subordination and trust in the wisdom and benevolence of officialdom to take our place as self responsible advocates for what we need and deserve as human beings with this disabling illness.

  16. Mary D says:

    Thank you, Jennie, for using the little spare energy to have to articulate the frustration of a community that continues to be faced with a federal response that is too small and too slow to meet the needs

    As you point out, NIH knows its plan is underfunded by 10-20 fold and yet there is no plan to do anything about it. Or maybe there is a plan but the timescale in which that plan will deliver commensurate research funding, expedited clinical trials, and approved drugs and diagnostics is so long as to be virtually meaningless to patients whose lives are being eaten right now.

    And even the fundamentals are being ignored – e.g. gaining consensus on what case definition to use in research – or at least getting agreement that PEM is mandatory for research studies in this disease.

    Thirty years of neglect and mistreatment by our government has decimated the ecosystem of academic researchers, biotech/pharmaceutical companies, and medical associations that drive R&D and clinical care in other diseases. People with ME deserve a creative and aggressive plan to fix what HHS broke and deliver clinical trials and treatments as quickly as possible, not in another 10-15 years. People with ME have waited patiently for that for far too long.

  17. Arlyn says:

    WOW! Brava! Immense appreciatin for all you do, Jennie.

    Perfectly put, Mary D., “lives being eaten up”.

  18. kathy d. says:

    Excellent job, Jennie. I’ll mention your blog to other ME/CFS sufferers.

    Gosh, from my perspective, the ME/CFS community has been patient and tried very hard to persuade NIH to take us seriously, fund and do research. We’ve seen promises of funding and research come and go, get brushed under the rug.

    And yet little is happening. Enough smoke to calm the angry bees is a good analogy.

    We are angry. We should be angry. Years of our potentially productive, fun lives have been taken from us. Little serious research has gone on at the government level or funded by the government.

    That scientists such as Ron Davis and others have to raise their own funds really is an outrage. They should be doing research and the government should be doing the funding — and in needed amounts to do extensive research.

    And blaming us for being angry for why the government isn’t doing more!
    That is deflection of blame as an excuse for NIH doing little. It’s blaming the ill population rather than the government taking responsibility and doing what they should.

    This is why ACT-UP did what it did. The government wasn’t taking HIV and AIDS seriously nor doing research as thousands of people were dying. And sufferers, the gay community and their supporters got serious and took action. And they got results.

    Also, women suffering from breast cancer have demanded research and funding.

    Even with M.S., it took pressure to do real research. A friend who has chronic M.S. told me there are no medications to deal with her type of the disease.

    I thank you for this post and all the work you have done. I agree that any progress that’s happened has been a result of years of advocacy. And this will continue to be so. Only continuing advocacy and pressure will obtain any progress. Now and in the future.

  19. kathy d. says:

    I forgot to say this but the graded exercise therapy regimen as promoted by researchers at Queen Mary University in London, the same people who did the PACE study, is recurring.
    Every day this week when I searched for chronic fatigue syndrome, I got articles from various publications that said graded exercise is a treatment for this disease.
    So, I guess whenever we make some headway and scientific studies are churning out more information, we’ll hear about GET again.

  20. billie moore says:

    Jennie, this is possibly one of your very most powerful blogs to date, and that is saying something considering the strength and accuracy of so many. I cannot add much to what others have said, just will restate, as I have before, the HHS – collectively – is not our friend. (Anyone or any dept. that attacks Carol Head as “inciting mistrust” is living in his or its own alternate universe.) Even those who have worked hard for us (I think of Vicky Whittemore) must hue to the departments’ (all) official policies: pat them on the head often but don’t fund, don’t change the CDC website to be scientifically correct, don’t create Centers of Excellence, don’t approve any drug, just DON’T help substantively. Or you will be in trouble.

    It has been six years since my son died as a result of having ME for 20 years. Essentially, nothing has changed in that time except much more (but still far too little) private research. No approved drugs. No significant rise in funding to well over $100,000 YEARLY for research and clinical centers. No change in the CDC website (the changes coming are likely to make us just as mad as the old website and old medical providers’ information, from what I can glean). In short, almost no hope for wellness.

    Action is needed. A leader is needed. A fighter. Actually, Carol gets my vote for that role! Go SMCI! Go #MEAction! And I hope you will keep going, Jennie. Your blogs articulate the problems in the most lucid way possible.

  21. Kathy D. says:

    And I heartily agree with the statement in solidarity with heroic ADAPT.

    I so wish I could do what they just did in D.C. and in Denver. Heroes all of them.

  22. Anne O says:

    I’m appalled and incredulous. This is just unbelievable.

    After 30 years of disdain (to quote Mary D) they top it up by inviting an ME-denying, patient-denigrating historian, and then THEY are disappointed in US?

    And they know we need 2o times more funding, but they sit on their hands and won’t make that happen in our lifetime.

    It’s hard to even believe.

    I think a lot about how we can convey to these people just how damaging every one of these incidents is for the very fragile hope many people with ME, especially those who are severely ill, have left. How can we reach them, how can we make them see that?

    We need them to CREATE hope, not crush it over and over again, adding insult to injury. How can we convey this? How can we make them picture themselves in our shoes, understand how that feels and just how ruinous each of these incidents are for extremely ill people trying to hold on to hope?

    Jennie, you are a hero. Thank you, thank you, thank you for all you do.

    • Jennie Spotila says:

      Thank you, my friend!!! You are so right. With your permission, I would like to quote you if I have a chance to ask a question at Monday’s telebriefing.

      • Anne O says:

        Please do!

        You have my permission to quote anything I’ve said here or elsewhere if it could help in any way!

  23. kathy d. says:

    I must commend everyone who made comments here. A lot of brilliance and determination.

    Well, I’m trying to go to Disability Pride on July 9and my ME/CFS Phone Group asked me to bring a ME/CFS Awareness sign. So I made one, attached it to my shoulder bag and will do so. I don’t know how long I’ll last as I’ve overdone it, but there are cabs all over.

    It’s expected to be big.

  24. Kathy D. says:

    See the CDC website. GET and CBT have been deleted. The IOM report
    is referred to. Photographs show sick people in bed, in wheelchairs or
    on the floor beside a wheelchair.

    This is a big step won by advocates. Now if only the NIH would
    cooperate with grants.

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