RFA Ticker, 11/28/16

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A short week due to the Thanksgiving holiday doesn’t slow NIH down, apparently. More than $40 million was committed to RFAs last week.

ME/CFS research didn’t even get the giblets. Will we be more successful in December?

Here are the current cumulative numbers:

FY 2017 FY 2016
RFAs Issued 63 352
Dollars Committed $339,297,563 $2,840,680,617
RFAs for ME/CFS ZERO ZERO

And here is the table for FY 2017 alone.

Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
11/21/16 6 $42,780,000 Zero
11/14/16 6 $44,350,000 Zero
11/7/16 10 $25,490,563 Zero
10/31/16 4 $26,550,000 Zero
10/24/16 10 $53,400,000 Zero
10/17/16 17 $94,890,000 Zero
10/10/16 1 $28,750,00 Zero
10/3/16 9 $23,087,00 Zero

If you want more background on the RFA Ticker, read the inaugural post.

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The Government Attitude Needed

twofaceGovernment/advocate interactions frequently happen on a public stage, where everyone is rightly careful about what they say. Sometimes, though, we can get access to behind the scenes communication. In emails that the authors probably believed would remain private, we can learn what those people really think about something – and it is not a pretty picture.

I have a story like this for you today. Two short emails about ME advocates capture a dismissive, insulting attitude from one person, and a respectful attitude from another. Both of the emails in question were sent by individuals no longer working on ME/CFS, but in light of the Shorter fiasco it is clear that government attitudes are still problematic.

Back in March 2015, I discovered that the NIH Office of Disease Prevention had mishandled public comment on the P2P ME/CFS report. Many comments submitted by advocates and organizations had not been sent to the Panel members. Among the many missing comments was a lengthy document from the CFS Advisory Committee. That document was prepared as part of CFSAC’s official function, and at government expense (to say nothing of the huge amount of time invested by the work group members).

But my discovery meant that this 20 page report (and the comments of dozens of others) was never sent to the Panel by the NIH Office of Disease Prevention. NIH admitted the error, and was forced to delay publication of the final version of the P2P report. Once the report was finally published, I remained very curious about how all of this was handled internally. In October 2015, I filed a FOIA request for communications among the people involved in the P2P meeting. Almost a year later, I received a response. And buried within all the documents were two emails about me.

Here’s what went down: when I discovered NIH’s mishandling of public comments, I emailed the authors of the CFSAC document to notify them of the problem and promised to keep them informed. I thought it was appropriate to copy then-Designated Federal Officer Barbara James.

It turns out that Ms. James forwarded my email to Dr. Susan Maier, who was then the ex officio representative of NIH on CFSAC. Ms. James added personal commentary, saying:

FYI. Don’t they have anything better to do than file FACA and FOIA requests? (emphasis added)

That one sentence embodies everything that is wrong with the way some government employees view ME advocates. It is dismissive and insulting. It demeans legitimate advocacy efforts. It ignores the fact that one of the few ways we can hold the government accountable is through investigating and exposing government failures. This is also one of the baldest examples of ableism that I have seen in a government email.

In addition to insulting me, Ms. James failed to acknowledge that my FOIA request had uncovered that CFSAC’s comments had been lost. My discovery helped her do her job, because it was her responsibility as DFO to submit those comments to NIH. But instead, Ms. James could only complain that I had nothing better to do.

Let me be clear: The only reason I’m doing any advocacy in the first place is because my government has completely and utterly failed to adequately address the ME crisis. I would much rather be working or raising kids or doing the thousands of other things I am unlikely to ever be able to do. Advocacy work is important, and believe me, I don’t do it for entertainment or lack of other things I want to do. Like many others, I do advocacy at great personal cost and sacrifice.

Ms. James’s comment is an example of a negative mindset about people with ME: we are a nuisance; we complain too much; we’re crazy; we’re demanding; we have small lives with nothing better to do.

That is an attitude we do not need. It is an attitude that interferes with the government’s public health mission and that impedes our ability to succeed in advocacy. ME advocates can point to decades of dismissal and disdain by government employees. We can unroll a long laundry list of examples that were not helpful or constructive, and that sometimes cross the line into outright prejudice and stereotypes.

It’s not the end of the story, though, because Dr. Maier replied to Ms. James. Dr. Maier did not always endear herself to the ME community, but this email was completely appropriate and accurate:

Thanks Barbara. They are concerned that their voices are not being heard. I understand. (emphasis added)

THIS is the attitude we need. Dr. Maier simply acknowledged that we have legitimate grounds to fear that our voices are not being heard. That’s it. She didn’t go any further than extending a little human decency and empathy, but it makes a difference to me to know that she did so.

Emails and attitudes like Ms. James’s are the norm for people with ME. We get that kind of thing from our healthcare providers, our social circles, and our government. Ms. James retired from HHS, but attitudes like this remain.

Dr. Maier is also no longer working with CFSAC, but the attitude in her email is exactly what we need from government employees. We need to be heard as contributors to solving the ME crisis. Our input is valuable, and we are worthy of respect. Even when we use adversarial tactics, it’s usually not personal. We’re performing a necessary function in the system, just as they are.

These conflicting attitudes remain relevant today. The recent invitation of Dr. Shorter to NIH was not only a major blunder, but also exposed dangerous thinking among some at NIH. The replies from Dr. Koroshetz and the Trans-NIH ME/CFS Working Group were respectful but missed part of the reasoning for our protests. Dr. Shorter’s talk still went ahead as scheduled.

But on the other hand, the teleconferences with the community have given us closer contact with NIH officials than I can recall us ever having had before. Several NIH scientists attended the IACFS/ME meeting and gave presentations. Dr. Vicky Whittemore asked CFSAC to make recommendations on how agencies can better engage the ME/CFS community in setting priorities for research.* I have encountered several NIH employees who have been both respectful and incredibly responsive.

Government agencies may appear monolithic, but they are not. The offensive, callous attitude embodied in Ms. James’s email about me (as well as NIH’s invitation to Dr. Shorter) is unwelcome and unproductive. Given the government’s history on ME, it is natural to expect all government employees to treat us badly.

But governments are made up of people, and people are not identical. Dr. Maier’s email to Ms. James is one example of empathy and understanding. Long-time advocates will recall Dr. Wanda Jones, who was respected and appreciated by the ME community. Dr. Whittemore gives every indication of following in her footsteps.

The emails exchanged by Ms. James and Dr. Maier use a total of four sentences, but reveal much about the kinds of attitudes we do and do not need from government employees. We need less disparagement and less ableism. We need more empathy and more respect.

People with ME will be best served when everyone comes together as equals to address this crisis. Bad attitudes will always hinder progress.

 

*Full disclosure: I am serving on the CFSAC’s working group on this topic.

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RFA Ticker, 11/21/16

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The big news (apart from the election, of course) is that Carol Head and Dr. Zaher Nahle of the Solve ME/CFS Initiative had a brief meeting with Dr. Francis Collins, Director of NIH. SMCI reported:

Dr. Collins could not offer insight as to the future of his position at the NIH but agreed that the vital progress ME/CFS has made thus far must be protected and bolstered. Dr. Collins acknowledged the past disservice and delay in regard to ME/CFS and committed to continue to support progress moving forward.

And that is the big question. Will Dr. Collins continue as Director? This would certainly be to our advantage since he has promised to support ME research. Or will a new Director come in, along with the new administration? That would mean we go back to square -1, having to build our case and convince a new (possibly less receptive) audience.

In a time of great uncertainty, we must press forward. We cannot lose a single minute or waste a single opportunity. After all, HIV/AIDS activists succeeded in transforming the landscape of federal policy and funding on that disease during the Reagan administration. President Reagan was seven years in to his term of office when he finally gave a speech on AIDS. If the HIV/AIDS activists were able to change the political calculus on that crisis, then surely we can continue to make progress in this one.

Here are the current cumulative numbers:

FY 2017 FY 2016
RFAs Issued 57 352
Dollars Committed $296,517,563 $2,840,680,617
RFAs for ME/CFS ZERO ZERO

And here is the table for FY 2017 alone.

Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
11/14/16 6 $44,350,000 Zero
11/7/16 10 $25,490,563 Zero
10/31/16 4 $26,550,000 Zero
10/24/16 10 $53,400,000 Zero
10/17/16 17 $94,890,000 Zero
10/10/16 1 $28,750,00 Zero
10/3/16 9 $23,087,00 Zero

If you want more background on the RFA Ticker, read the inaugural post.

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RFA Ticker, 11/14/16

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It got a bit crazy with NIH last week, didn’t it? The talk by Dr. Shorter went ahead as scheduled on November 9th, much to the chagrin of the entire patient community. Afterwards, NIH issued a follow up response which concluded:

The lecture was attended by approximately 15 scientists, including some who are part of the clinical study investigative team.  It is fair to say it will have no impact on NIH’s interest in doing everything we can to advance the science of ME/CFS.

Most people, myself included, did not interpret the statement as an apology.

In funding news, it was reported that:

Vicky Whittemore, the agency’s CFS point person in Bethesda, Maryland, delivered on a promise that NIH Director Francis Collins made last year by announcing that NIH spending for research on the poorly understood disease should rise to roughly $15 million in 2017, doubling the estimated $7.6 million handed out in 2016.

We don’t know if that $7.5 million predicted increase will come from the new RFAs or if it will include individual investigator funding as well.

Finally, Dr. Koroshetz tweeted:

Many, but certainly not all, of the responses he received were critical of NIH’s commitment thus far.

I decided to take Dr. Koroshetz at his word. I tweeted:

I am ready and waiting.

Here are the current cumulative numbers:

FY 2017 FY 2016
RFAs Issued 51 352
Dollars Committed $252,167,563 $2,840,680,617
RFAs for ME/CFS ZERO ZERO

And here is the table for FY 2017 alone.

Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
11/17/16 10 $25,490,563 Zero
10/31/16 4 $26,550,000 Zero
10/24/16 10 $53,400,000 Zero
10/17/16 17 $94,890,000 Zero
10/10/16 1 $28,750,00 Zero
10/3/16 9 $23,087,00 Zero

If you want more background on the RFA Ticker, read the inaugural post.

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The Proverbial Olive Branch

olivebranchIn what will probably be the last word from NIH on the invited lecture by Dr. Edward Shorter, the Trans-NIH ME/CFS Working Group has issued a follow up response to the ME community. For background, read my open letter to Dr. Koroshetz, his response to the community, and my verbal line in the sand. Here is the full text of the Working Group’s follow up response, followed by my thoughts.

 

Dear members of the ME/CFS community,

You have written to express concern about the NIH lecture by Edward Shorter that took place on November 9th.  Thank you for sending us your thoughts. 

Please know that the lecture you asked about was not sponsored by either the ME/CFS Special Interest Group or the Trans-NIH ME/CFS Working Group, which means that it does not reflect the ideas, opinions, or policy of the NIH or the scientists now working on this disease.  Given the professional and learning environment that NIH promotes, dozens of people come each week to the NIH to exchange ideas with NIH scientists; the scientists who attend these lectures frequently challenge or disagree with the speakers’ ideas. In scientific circles, disagreement with what is said is often more scientifically productive than agreement.  The exchange of information and divergent opinions, followed by critical analysis, is essential to moving any field forward.  The most important thing that we wish to share is that NIH remains firmly committed to using scientific methods to uncover the biological mechanisms that cause ME/CFS and to improve the lives of people who have been suffering for years, and even decades.  Comments made in a seminar will not undermine the progress of science at NIH. 

Several of you have asked why the lecture was not mentioned during the telebriefing that NIH hosted on November 2nd.  The telebriefing was intended to discuss the efforts of the Trans-NIH ME/CFS Working Group and the progress made in initiating the NIH Intramural research clinical study.  The lecture was not part of those efforts.

The speaker shared his viewpoint, the scientists who attended asked questions, and perspective was provided by a patient and a community physician. The lecture was attended by approximately 15 scientists, including some who are part of the clinical study investigative team.  It is fair to say it will have no impact on NIH’s interest in doing everything we can to advance the science of ME/CFS.

Regards,

The Trans-NIH ME/CFS Working Group

We already knew that the Shorter lecture went forward yesterday, and the person with ME who attended shared a brief summary on Facebook. Today’s after-the-fact follow up is clearly an attempt to smooth things over, and put it behind NIH. Whether the ME advocacy community is ready to drop it remains to be seen. But I have a few thoughts.

First, they passed the buck. In this email, the Trans-NIH Group and the ME/CFS Special Interest Group disavow responsibility for inviting Dr. Shorter. The Solve ME/CFS Initiative reported that it was the National Institute of Nursing Research that invited Dr. Shorter, although there is only speculation as to who specifically did so at NINR, or why.

Second, there is a little touch of NIH-splaining: “disagreement, followed by analysis, being more productive than agreement in scientific circles.” Yes, thank you, ok, we get it. Differing points of view and interpretations of data are what helps move science forward. Yes. Uh-huh.

But that was only part of the point of our protests. I don’t think any of us would object to NIH inviting a scientist who argued ME was an autoimmune disease instead of an infectious disease (or vice versa). That is an example of divergent opinions that can eventually be resolved through critical analysis and more research.

We were never protesting the invitation of someone with a divergent or even unpopular view. We were protesting a) giving the microphone to an opinion that not only is not based in fact, but is disproven by reams of data; and b) giving the microphone to a person who insulted and denigrated ME patients and the National Academy of Medicine in an article last year (and who has a long history of misogynistic statements, according to the reviews of his work done by other ME advocates). THAT was the problem.

I am by no means the first person to suggest the following mind exercise for communicating with the ME community, but it is especially useful in this instance: Take out the word “ME/CFS” and replace it with “HIV/AIDS.” Here’s how Shorter’s remarks play out in this hypothetical:

  • There have been no convincing new HIV/AIDS studies . . . And there never will be.
  • the HIV/AIDSers appeared in mass to pour out their tales of woe.
  • The public hearings were a circus, with moaning and groaning HIV/AIDS victims right and left.
  • [W]hat many of these HIV/AIDS patients have is a kind of delusional somatization, the unshakeable belief that something is wrong with their bodies rather than their minds.

Absolutely horrific, right? No one in their right mind would speak this way about people with HIV/AIDS. Now reread the two NIH responses. Are they adequate responses? Do they express the right degree of apology and conciliation? If someone were invited to NIH and that person had previously spouted such vile comments as above, would “In scientific circles, disagreement with what is said is often more scientifically productive than agreement” be an appropriate apology from NIH? Do I even have to ASK that question?

The distance between the apology that would be immediately issued by NIH in the above hypothetical and the response we got today is instructive. We have a very, very far way to go until it becomes as unthinkable to insult people with ME as it is to insult people with HIV/AIDS. And all of us have a lot of work to do to get there.

Finally, we have an olive branch of sorts: “NIH remains firmly committed to using scientific methods to uncover the biological mechanisms that cause ME/CFS . . . Comments made in a seminar will not undermine the progress of science at NIH. . . . It is fair to say it will have no impact on NIH’s interest in doing everything we can to advance the science of ME/CFS.”

That’s not an apology, but it is probably as close as we will get in the public sphere. This is too bad. Dr. Koroshetz and the Trans-NIH Group let a golden opportunity to win the ME community’s trust slip through their fingers.

Last week, Dr. Koroshetz could have said, “I understand why you have serious concerns. Let me look into this.” Then, Koroshetz or the Trans-NIH Group could have told us that NINR was responsible, and that NIH in no way endorses Shorter’s historical, scientific, or individual opinion of ME and people affected by ME. Koroshetz could have: 1) apologized that this invitation created the impression that NIH had not changed since the bad old days; 2) acknowledged the terrible timing (coming so soon after the IACFS/ME meeting and the telebriefing); 3) offered his assurance that disrespecting and demeaning people affected by any disease is not acceptable for NIH employees or guests; and, 4) proposed a solution to make the situation right.  If he had done that, I would personally be leading a standing ovation right now.

Instead, we got an olive branch and a less direct acknowledgement of the screw up. And quite frankly, that is more than we have gotten from government agencies at various points in the past.

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Small Steps of Progress

Progress, no matter how small, is still progress. Any tiny incremental change advocates can achieve is improvement, and it’s important to acknowledge when it happens. I am pleased to report that NIH has taken a small step towards providing more transparency in its ME/CFS grant reviews.

During the November 2nd telebriefing by NIH, Brian Vastag asked about the makeup of the CFS Special Emphasis Panel. That is the committee that reviews and scores ME/CFS related grant proposals. The SEP went through a period of years where there were almost no ME/CFS experts involved in grant review, and so Brian’s question was important.

Dr. Joe Breen of the National Institute of Allergy and Infectious Diseases answered, saying that there were ME/CFS experts involved. He also said that the SEP rosters were available to the public, and we could examine them at any time.

I knew this was not true.

Back in 2013, I attempted to investigate the composition of the SEP, and Don Luckett at NIH told me that the rosters are not posted online “due to threats some previous panel reviewers have received.” He told me to file a FOIA request to obtain the old rosters.

It ended up not being so simple, and it took me two years to obtain those rosters. Furthermore, NIH required me to file a FOIA request after each and every SEP meeting in order to obtain the new rosters. It was a time waster for me and for FOIA staff, especially because every other grant panel roster is published on the Center for Scientific Review website.

So after the November 2nd telebriefing, I immediately wrote to Dr. Breen to bring all of this to his attention. Dr. Breen did some swift follow up, and this week he informed me that the SEP rosters will be available thirty days prior to each meeting.

The next meeting of the CFS SEP is December 6, 2016, and the roster is available. The grant reviewers will be Dr. Fred Friedberg, Dr. Nancy Klimas, Dr. Kathleen Light, Dr. Edward Mocarski, Dr. Peter Rowe, and Dr. Roland Staud. All have served on previous SEPs.

It seems like a very small victory that we will be able to see the rosters in advance. But this is a small move towards increased transparency at NIH. It is also a step in the direction of equality. Other disease areas have their rosters posted; now we do too.

My thanks to Dr. Breen and the Center for Scientific Review for making this small bit of progress possible.

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RFA Ticker, 11/7/16

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We learned a bit more about NIH’s plans for ME/CFS RFAs during last week’s NIH telebriefing. In response to a comment from Bob Miller, Dr. Koroshetz said that funding for the research consortia centers will be “significant” and “equivalent to any other centers.”

This is not as specific as one might think, as there is a huge range of funding for research consortia and data managing centers. Just last week, I highlighted two RFAs for pilot clinical trials in pediatric chronic kidney disease through a network of three participating clinical centers and a coordinating center. The price tag for those RFAs? $1.5 million combined.

In contrast, NIH offered $18,500,000 to fund nine Diabetes Research Centers. The Blood and Marrow Transplant Core Clinical Centers was offered a total of $70 million. Autism Centers of Excellence received an RFA of $25 million.

That’s a huge range: $1.5 million to $70 million. So what is “equivalent” to other centers when the range is that broad?

There is another very important thing we need to keep an eye on. The federal fiscal year usually runs October 1 to September 30. If there is no budget approved by Congress, the government shuts down. This year, in what seems to be the new routine approach, Congress passed a continuing budget resolution. That means money is made temporarily available to keep the government running until a permanent budget bill can be passed.

I bring this up because of one of the provisions of the temporary budget:

(Sec. 104) Prohibits any appropriations or funds made available by section 101 from being used to initiate or resume any project or activity which was not funded in FY2016.

This means that NIH cannot make new grants for anything not funded in FY2016. The new deadline for the FY2017 budget is December 9th. Election results tomorrow will determine what kind of budget we’ll get for 2017. Hypothetically, if NIH loses money in the final budget, our RFAs will be directly affected.

In other words, it ain’t over yet – no matter what Dr. Koroshetz said last week.

Here are the current cumulative numbers:

FY 2017 FY 2016
RFAs Issued 40 352
Dollars Committed $226,677,000 $2,840,680,617
RFAs for ME/CFS ZERO ZERO

And here is the table for FY 2017 alone.

Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
10/31/16 4 $26,550,000 Zero
10/24/16 10 $53,400,000 Zero
10/17/16 17 $94,890,000 Zero
10/10/16 1 $28,750,00 Zero
10/3/16 9 $23,087,00 Zero

If you want more background on the RFA Ticker, read the inaugural post.

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Enough Is Enough

After I pointed out to Dr. Walter Koroshetz, Chair of the Trans-NIH ME/CFS Working Group, that NIH had invited a speaker who has publicly insulted people with ME/CFS and anyone who takes this disease seriously, Dr. Koroshetz responded that “inclusion in scientific conversation is not an endorsement,” and so little is known “that inclusivity of scientific thought will be critical to our success.”

“[I]nclusivity of scientific thought” does not typically include hypotheses that have been disproven. NIH does not invite HIV denialists and anti-vaxxers as speakers because they add no value to NIH’s work. So if NIH is making sure an opinion is included in the conversation, then NIH has made a judgment that the opinion is worth thinking about. Extending an invitation to Dr. Edward Shorter means that NIH expects he will say something relevant to its work.

To which I say: Enough.

Reams of data and peer reviewed papers have confirmed what patients have always known: ME/CFS is not a psychological disorder. The Agency for Healthcare Research and Quality, the National Academy of Medicine and NIH’s own P2P Panel concurred.

It is past time to discard the psychogenic myths of CFS’s past, once and for all.

Enough. Is. Enough.

I do not accept that outdated views, disproven by more recent work, should be included in the scientific conversation. My health and my life are worth more than that. I demand rigor. I demand data. I deserve quality science, not dusty old-fashioned prejudice.

I do not accept being dismissed, belittled or disrespected. I will not be manipulated into believing that my reality is not real.

People with ME/CFS are not delusional somatizers. The National Academy of Medicine (IOM) report was not junk science. Militant advocates did not hijack the committee. People with ME/CFS have not obsessed their way into disability.

Until the National Institutes of Health – as an institution and as a collection of individuals – sees this truth of the matter, there is nothing more to say.

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Dr. Koroshetz Responds

I just received the following letter from Dr. Koroshetz:

Below is a letter from Dr. Walter Koroshetz

Dear members of the ME/CFS community,

I appreciate the concern of many in the ME/CFS community as expressed in Ms. Spotila’s blog post concerning the visit and lecture by a Professor of the History of Medicine at the NIH intramural research program. It is important to understand the NIH’s commitment to reduce the burden of illness for people suffering with any illness regardless of its cause or its manifestations. In fact the study of one condition not infrequently leads to clues to the treatment of another in totally unpredicted ways. The exchange of information and widely divergent scientific opinions followed by critical analysis is essential to moving any field forward. Investigators at NIH regularly invite individuals to conversations about their areas of interest. This inclusion in scientific conversation is not an endorsement. Rigorously collected data that enables causal inference is the foundation of science. This remains the foundation of the NIH, and as stated from the start the NIH intramural investigators will focus on post-infectious ME/CFS in order to closely examine the clinical and biological characteristics of the disorder and improve our understanding of its cause and progression.

I hope that the ME/CFS community can endorse this scientific enterprise as we at NIH try to direct it to the problems faced by those who suffer with ME/CFS, both here at intramural research program and at universities and medical centers across the country. We know so little about the biological causes and nature of the disease that inclusivity of scientific thought will be critical to our success. At this point sadly we don’t know where the scientific enterprise will lead us, how long it will take, or from what area of research effective treatments will come.

The Professor mentioned in your letter was initially incorrectly listed as part of the ME/CFS Special Interest Group, which was corrected. The speakers that have come to the ME/CFS investigators are listed on the website at (http://mecfs.ctss.nih.gov/sig.html) and include:

June 15th, 2016: Anthony Komaroff, M.D.: An Overview of Chronic Fatigue Syndrome (ME/CFS) 

July 18th, 2016: Leonard Jason, Ph.D.: Diagnostic Challenges and Case Definitions for CFS and ME

August 24th, 2016: Daniel Peterson, M.D.: CFS/ME: Perspectives from a Local Epidemic 1984-2016

September 21st, 2016: Staci Stevens, M.A. and Mark Van Ness, Ph.D.: Cardiopulmonary Exercise Testing in ME/CFS 

Sincerely yours,

Walter J. Koroshetz, M.D.

Director, National Institute of Neurological Disorders and Stroke 

On behalf of the Trans-NIH ME/CFS Working Group

Posted in Uncategorized | 27 Comments

An Open Letter to Dr. Koroshetz

The following text is an open letter that I sent to Dr. Walter Koroshetz, Director of the National Institute of Neurological Diseases and Stroke.

A plea for sanity, respect and science

Dr. Koroshetz,

I write to you tonight to personally ask for your intervention for the sake of people with ME/CFS.

Today, we learned that Dr. Edward Shorter has been invited by the ME/CFS Special Interest Group to present an historical perspective on CFS on Wednesday, November 9th at NIH. I ask you to reverse this decision.

Dr. Shorter authored a commentary on the IOM’s report and diagnostic criteria for ME/CFS in February 2015. In his original article, he said the following:

  • The IOM committee was “a committee that the CFS patients’ lobby has roped, captured, and hogtied.” The IOM report was an “embarrassment . . . valueless, junk science at its worst.”
  • “Nothing has changed since [1992] in scientific terms. There have been no convincing new studies, no breakthrough findings of organicity, nothing. And there never will be.”
  • “[B]ringing militant advocates into such a discussion is equivalent to a committee of geographers that includes members of the Flat Earth Society.”
  • “[I]n the several public hearings the CFSers appeared in mass to pour out their tales of woe.”
  • “The public hearings were a circus, with moaning and groaning victims right and left.”
  • “[W]hat many of these patients have is a kind of delusional somatization, the unshakeable belief that something is wrong with their bodies rather than their minds.”

Psychology Today rightly pulled this highly offensive and wildly inaccurate article. Five days later, Dr. Shorter published a heavily edited version of his opinion, putting forth the same argument with less explicit insults. CFS is “a psychic epidemic,” and patients have “delusional somatization” or depression. “[T]hese illness beliefs may lead to disability, as people obsess about their symptoms, entrench themselves in the conviction of organicity, and become disabled.”

Dr. Shorter’s opinions have no place in discussions about and research into ME/CFS, a disease which the IOM and the NIH’s P2P Panel reports declared unequivocally to be a physiological disease, not a psychological disorder. There is nothing to debate here; there are not two sides to this argument. NIAID would hardly invite Dr. Peter Duesberg to speak on the question of whether HIV causes AIDS. Nor would NICHD invite Dr. Andrew Wakefield to argue that vaccines cause autism. Discredited hypotheses should not be cast as valid views in the face of data that disprove them.

Just yesterday, you addressed people with ME/CFS during an NIH telebriefing. You emphasized the importance of partnerships between researchers and the community. You assured us that NIH sees our involvement as critical for success. Surely you must understand that an invitation extended to Dr. Shorter is a slap in the face to people with ME/CFS. You cannot expect trust, cooperation and partnership from the very people that your invited speaker calls “militant,” “delusional,” and “moaning and groaning victims.”

Dr. Koroshetz, please, if you sincerely want to move ME/CFS science forward, Dr. Shorter cannot be a part of that effort. If you are sincere in your request that people with ME/CFS work with you, then do not insult us by listening to a view of our disease that has been thoroughly discredited by NIH-funded science.

I ask you, Dr. Koroshetz, to lead ME/CFS research forward, not backward. I ask you to lead by example, and accord people with ME/CFS the same respect that you show to people with epilepsy or Parkinson’s disease. Follow the conclusions of the IOM and P2P reports. Follow the data. It is time to set aside the psychogenic hypothesis of “chronic fatigue” and step firmly forward, towards the answers that await us in biomarker and pathophysiological research.

I am ready to partner with you and any scientist who will follow the data forward. Will you partner with me?

Sincerely,
Jennifer Spotila

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