A shorter version of this article was published on STATNews on January 10, 2019.
One message dominates NIH’s talk about ME/CFS research: submit more high quality grant applications. Funding would increase if there were more high quality grant applications. Give us a chance to prove we’re serious, but send more high quality grant applications. Thank you for your petition with 50,000 signatures, but send more high quality grant applications.
In a field desperate for research funding, one might think that ME/CFS researchers would be flooding NIH with grant applications. Yet that does not seem to be happening. One significant reason why is that NIH’s business-as-usual approach actually increases the barriers to success for ME/CFS grant applications.
A researcher who wants NIH funding for ME/CFS research has to navigate an obstacle course that begins long before the grant application gets in front of reviewers, an obstacle course which arises from NIH’s own broken response to ME. There are at least six questions a researcher must consider in deciding whether to apply for funding:
- Does NIH want my grant? A researcher may decide the answer is no, especially if she wants to generate hypotheses or has been discouraged by NIH’s lack of interest.
- Is there NIH funding for my grant? Given that NIH currently has no Funding Opportunity Announcements targeted at ME/CFS, researchers could very well conclude the answer is no.
- Can I write this grant? On top of the time pressure and institutional challenges that all researchers face, ME/CFS researchers may face additional barriers such as lack of support from institutions, lack of mentors, and the general stigma associated with this disease.
- Who will review my grant? Based on the SEP rosters for the last eighteen years, researchers should expect that some reviewers will be ME/CFS experts but they may not make up the majority.
- Will the SEP members review my grant fairly? Given the unique challenges of the field that are not recognized by non-experts, applicants may conclude the answer is no.
- Who is my competition? There is no set answer to this question. Depending on timing, the competition could be fellow ME/CFS researchers or a much larger and harder to define pool.
Let’s follow a hypothetical researcher as she runs this gauntlet to submit her ME/CFS proposal to NIH.
Does NIH want my grant?
Before the first word is typed on a grant application page, a researcher asks herself whether NIH will be interested in her project. There are multiple reasons why she may conclude that the answer is no.
First, NIH does not fund hypothesis-generating research. A proposal that boils down to “I’m going to look and see what I can see” is not going to succeed. Yet ME/CFS research needs these projects at this stage. This field has not just been ignored; it has been suppressed by decades of stigma and the false narrative that it is caused by deconditioning and depression. Ironically, NIH has tacitly admitted that hypothesis-generating research is needed. The Clinical Care Center study run by Dr. Avindra Nath is designed to collect reams of data that will then generate hypotheses for further research.
Second, a researcher may be deterred by NIH’s demonstrable lack of interest as evidenced by low ME/CFS funding. NIH currently has no Funding Opportunity Announcements targeted at ME/CFS (see below). In addition, NIH funding has been appalling over time–including the 17% decrease in funding last year–so a researcher may conclude that NIH simply isn’t interested in ME/CFS projects.
Third, if the researcher wants to conduct a clinical trial of a drug treatment, she will have trouble at NIH. Dr. Nancy Klimas has tried, but she said, “There is no door to walk through at the NIH” for clinical trial funding in ME/CFS. Klimas attributed this to the fact that the ME/CFS Special Emphasis Panel (see below) does not review clinical trial applications.
Finally, a researcher may be individually discouraged from applying. I have heard multiple stories along these lines, although people are understandably reluctant to go on the record. Dr. Ron Davis went public with the rejection of two of his pre-proposals in 2015. One of the reasons given by the National Institute of Neurological Diseases and Stroke was that, “It was not clear if the proposal falls within the mission of NINDS.”
Is there NIH funding for my grant?
A researcher might decide NIH is interested in her project, but she also has to ask if there is funding available for it. To answer that question, she will look at two general types of Funding Opportunity Announcements.
First, she will look for a Program Announcements, or PA. The PAs are like open house invitations. NIH says, We’re interested in seeing grant proposals in such-and-such area of research. The invitation is really important, because it tells a researcher where the open house is and what time it is happening. There is no guarantee that there will be enough food and booze to go around, but the researcher knows that if she shows up at the specific place and time then she can try to fight her way to the buffet. However, NIH’s last open house invitation for ME/CFS research was issued in 2012 and it expired in 2015. There is nothing whatsoever targeted for ME/CFS at this time.
Incidentally, on the last NIH telebriefing, Dr. Vicky Whittemore said that NIH would no longer be issuing Program Announcements. However, when I followed up with her after the call she said that her comments were premature. Apparently NIH is contemplating moving away from PAs but no announcement has been made yet.
The second type of Funding Opportunity Announcement is the Request for Applications, or RFA. Unlike a general invitation, an RFA is a specific type of funding competition. NIH says, We have X dollars set aside and we want to spend that on this specific type of research. This is more like a competitive swim meet than an open house. You have to qualify for the swim meet in order to compete, but someone is definitely going home with a gold medal. If an ME/CFS researcher is doing the kind of research the RFA wants, then she knows her application has a shot at the set aside funding.
This is why ME/CFS advocates and researchers are constantly asking for RFAs instead of PAs: someone is going to get money out of an RFA competition. This is also why NIH is very reluctant to issue RFAs: it requires NIH to decide in advance how much money it will invest and then set that money aside for the competition.
Just to be clear, NIH issues plenty of RFAs across its full research portfolio, including forty-three RFAs in October 2018 alone. NIH can do this. But NIH has been clear that it has no intention of issuing an RFA in ME/CFS research any time soon.
It’s easy to understand why a researcher might give up on applying to NIH, given the picture I’ve painted thus far. However, let’s assume that our hypothetical researcher has concluded that NIH wants her grant. And despite the fact that there is no funding opportunity targeted at ME/CFS, our researcher has concluded that there is a chance that NIH might fund her grant. Next she has to ask:
Can I write this grant?
Generally speaking, scientific researchers at academic institutions are responsible for obtaining their own funding. Universities do not fund much research themselves. Researchers know they have to write successful grant applications to get funding, and it is essential to their careers to do so.
Yet it is not that simple. An NIH grant application can take several months to write, and that is after months of planning time. The typical NIH application might be 30 pages long, but the applications for the Collaborative Research Center RFA were hundreds of pages long. The more complex the project and the more collaborators involved, the more difficult and time consuming it is to write the application. Submitting successful applications is part of the job description, but so is conducting current research, teaching a full course load, supervising graduate students, and successfully publishing study results. Oh, and there are committee meetings and other administrative duties. The average professor works sixty hours per week.
And our hypothetical researcher does not just need time. She needs support from her institution in the form of equipment, space, and staff. She needs her department head to support her ideas (or at least not actively squash them), and her application must include letters from her institution and collaborators to prove she has that support.
Obviously, this can go wrong in multiple ways, and many of these issues are not limited to ME/CFS research. However, the decades of stigma and misinformation have a unique impact in ME/CFS. Support from institutions and colleagues is harder to come by. Mentors are few and far between. All of the well-known challenges of writing successful grant proposals are multiplied in this field, increasing the difficulty of our hypothetical researcher’s obstacle course. NIH has done nothing to alleviate the challenges that have arisen from its own history with ME/CFS.
Who will review my grant?
NIH’s peer review system is at the core of its funding decisions. The Center for Scientific Review appoints reviewers with relevant expertise to Study Sections and Special Emphasis Panels. The reviewers score applications on a variety of criteria, and come up with an overall impact score. This peer review is not the final decision on an application, but it is critically important. A bad score in peer review is fatal for the application.
Given the importance of the peer review scores, it’s obvious that reviewers must have the appropriate knowledge and expertise. Yet this has not always been the case when it comes to ME/CFS research.
I have been tracking the rosters of the various incarnations of the CFS Special Emphasis Panel, or SEP since 2000, and I’ve seen definite trends. In earlier years, the SEP covered the areas of CFS, Fibromyalgia, and Temperomandibular Joint Dysfunction. As a result, the SEP reviewers were predominantly dentists, psychologists, and pain experts. Between 2000 and 2010, the average representation of CFS experts on the SEP was 15%.
In November 2010, the SEP was assigned a more narrow scope of just CFS (changed to ME/CFS in 2012). The new scope had an immediate effect on the representation of experts on the rosters. Between November 2010 and the end of 2017, ME/CFS experts made up 72% of the rosters on average.
There is one exception, and that is the roster of the SEP that evaluated the applications for the Collaborative Research Centers and Data Management Center in 2017. ME/CFS experts made up only 26% of that roster. There are several possible reasons for this. First, NIH’s conflict of interest policy meant that anyone applying for RFA funding would have been excluded from the roster, along with many of their colleagues. (Read more about the COI policy here ). Second, the nature of the applications required peer review by experts in population studies, computational biology, and other areas outside of ME/CFS research.
Then, the SEP rosters took a puzzling turn in 2018. ME/CFS experts made up 25-44% of the rosters at the three review meetings. I have no explanation as to why the rosters have shifted to include fewer ME/CFS experts. Since the SEP panel is reconstituted for every review cycle, there is also no way to predict representation on future meeting rosters.
Will the SEP members review my grant fairly?
Our hypothetical researcher should be prepared for her application to be reviewed by a variable mix of ME/CFS experts and non-experts, and so she has to wonder if she will get a fair and accurate review score. I am not assuming that non-experts will automatically trash ME/CFS grant applications, but I also do not assume that all SEP members will use the right standards.
First, it is possible that ME/CFS experts on the SEP are not able to assess all aspects of all ME/CFS grant applications. For example, a POTS researcher on the panel may not be familiar with design of genome-wide association studies or computational biology. A psychologist may not be able to critique a study with newer technology like QEEG. Expertise in ME/CFS does not automatically convey expertise in every possible study of the disease.
Second, reviewers bring their own biases with them. Sleep researchers have a different understanding of fatigue than ME/CFS experts. Reviewers may be unfamiliar with post-exertional malaise, including how it differs from fatigue and how to assess it. The worst case scenario is a reviewer who believes the lie that ME/CFS is depression and deconditioning. Dr. Ian Lipkin said that this is exactly what happened with one of his applications in 2014:
I have been in competition now twice to get funded, and the people there who reviewed me gave me abysmal scores. And the critiques of my work were unfair, and one of the people who critiqued my work said, in fact, that this is a psychosomatic illness. I was floored. I protested, and for reasons that are obscure to me this same individual wound up back on the study section, and I got a similar unfundable score.
Third, ME/CFS research has unique challenges that are well-known inside the field, but potentially not understood by scientists outside the field. Case definition is an obvious example of this. The field has used multiple case definitions over the years, some of which have fatal flaws. NIH has refused to select a single gold standard case definition, arguing that researchers should justify their chosen definition in the applications. But how is a non-expert supposed to evaluate that choice and justification? Someone outside the field is probably unfamiliar with the differences between the Oxford, Fukuda, Reeves, Canadian Consensus, and National Academy of Medicine criteria. Outside reviewers will have difficulty assessing the impact of chosen criteria on a study, and they are unlikely to appreciate the challenges of recruiting appropriately diagnosed subjects.
Fourth, peer reviewers will bring expectations from their own fields of study. A cancer or heart disease researcher is used to multi-center studies, with sample sizes in the thousands. That kind of study has been and remains impossible in ME/CFS. Reviewers may have unrealistic expectations about data quality and study design. Non-ME/CFS experts will also be unable to assess whether an area of study is a strategic priority in the field.
The peer review process is a cornerstone of funding decisions at NIH, but it is far from the only factor in play. Our hypothetical researcher faces additional barriers, including her competition.
Who is my competition?
Competition for NIH funding is fierce, not matter what the area of study. NIH’s overall application success rate was 18.7% in 2017. However, an ME/CFS grant application has to compete in ways that put our hypothetical researcher at a disadvantage.
First, an ME/CFS grant application is naturally competing against all the other applications reviewed at a specific SEP meeting. This can actually happen more than once. NIH allows researchers to revise and resubmit applications based on reviewer comments. On the second submission, an ME/CFS application will compete against an entirely new group of applications in front of a different group of reviewers. That means that an application for a proteomic study could have been scored in comparison to other -omics studies in one round, but then compared to POTS or infection studies in the next round. Given that each review meeting has a new roster, new reviewers may have different criticisms of the application than the first group. So our hypothetical researcher could revise her application based on comments from Group 1, and then get entirely new and different criticisms from Group 2.
Second, the competition pool is heavily influenced by the Funding Opportunity Announcement. Recall the open house vs. swim meet analogies I discussed earlier. Those are very different sets of competitors. With a Program Announcement, our hypothetical researcher is competing against everyone else headed for the buffet at the open house. With an RFA, our researcher is competing against just the swimmers in the pool—and someone is guaranteed to win. This will influence the peer review scores. Reviewers for an RFA know that a good score will basically guarantee funding, and select from among the applications in front of them. Normal Program Announcement review is a more diffuse competition, in part because no one is guaranteed funding and the full group of applicants might not be reviewed by the same group of reviewers.
Third, applications that score well at the SEP stage are then sent to the relevant Institute’s Council for consideration. At this level, the application is now competing against all the other applications reviewed at the Council meeting, regardless of the field. For example, an ME/CFS infection study will compete against every other grant coming before the Council of the National Institute of Allergy and Infectious Diseases. The infection study might be fabulous compared to other ME/CFS applications, but not as strong compared to hepatitis and influenza studies that have huge sample sizes, etc. In addition, ME/CFS is not a named priority at any Institute. The ME/CFS immune study might be critical in our field, but the Council (which has no ME/CFS experts on it) might see it as a much lower priority given the Institute goals.
As I pointed out before, ME/CFS has neither an active RFA nor PA. New applications are currently being submitted under very general parent announcements like this one. It invites applications (to any of twenty-three participating Institutes) for defined projects “in scientific areas that represent the investigators’ specific interests and competencies”. This is an incredibly broad net, and the competition is basically all grants being considered in a funding cycle by a particular Institute. There is no target our hypothetical researcher can aim for, other than get the best score she can and cross her fingers.
Should I stay or should I go?
NIH’s proposed fix for the dismal state of ME/CFS research funding is simply “submit more high quality grant applications.” In order to do that, our hypothetical researcher has to climb over a series of barriers created and maintained by NIH’s actions in ME/CFS research.
Should our hypothetical researcher submit another ME/CFS grant application? NIH sees no reason why she shouldn’t. As a person with ME, I desperately want her to submit one. But will she decide to invest the time and effort, roll the dice, and apply? How many times will she try? Can anyone blame her if she decides to move to another field?
NIH is responsible for erecting and maintaining this obstacle course. Yet they wash their hands of the problem and repeat the refrain, “Send more high quality grant applications.” NIH’s normal approach to encouraging more proposals will not work in ME/CFS.
There is no single silver bullet that can fix NIH’s broken response to ME. However, there are many actions NIH could take to lower the barriers and truly encourage more applications. Difficult problems require complicated solutions. It is time for NIH to tackle this problem with more than just words.
Thank you for this clarification as to why we are lacking in proposals. Have read the NIH request for more, which would lead most to presume the researchers just need to roll up their sleeves. You have made it clear that it’s much more than that.
Your choice to illustrate this post with the military photos is genius – our researchers have to have the stamina and intelligence of a Marine or a Navy Seal just to get on the path. Which is why so many of those who persist have a personal connection that makes not doing the research unacceptable.
In the same way, AIDS research was demanded by the partners and lovers of those who were dying.
What NIH are doing is dragging out the timeline further. After 29+ years, I have no belief they have my best interests anywhere near their hard hearts. They want us to go away.
We can’t.
Jennie – brilliant as usual. In addition to all the obstacles you enumerate, the applicant must have at least half of the work already done (personal experience with NIH SS’s). So that means she needed to have received funding from somewhere to collect the preliminary data. And it’s significant since it’s from patients, so she has to have an approved IRB – again not trivial. The study section has to be scientists who have “seen” this disease, bc of the stigma as you point out.
You are absolutely correct. I didn’t spell it out when I talked about hypothesis generating research, but review panels definitely want prelim data.
Excellent piece, Jennie. Francis Collins, are you reading this?
Thanks for this complete summary. I didn’t know there was no PA for ME/CFS! I don’t understand why that would be if the NIH is committed to increasing funding for this disease.
An RFA is clearly and desperately needed. Jennie has done great work showing an actual DECLINE in spending last year – something unthinkable when Francis Collins said that the NIH is serious about increasing funding for ME/CFS and to watch us! Well, Jennie, thankfully, is watching and it ain’t happening.
I hadn’t thought about the lack of institutional support that many ME/CFS researchers in less prominent institutions may receive.
ME/CFS researchers, though, shouldn’t be dissuaded by Ron Davis’s or Ian Lipkin’s very public grant problems. (That Davis grant did not go through the CFS SEP). According to my calculations which are hopefully correct ME/CFS grant success rates appear to be equal if not higher than the norm at the NIH.
. . .
In the end, though, it’s really up to the NIH at this point. They know the ME/CFS research field now. After several decades they know ME/CFS researchers are not going to suddenly start applying for a bunch of grants. They know this…If they are serious about growing this field they HAVE to produce an RFA.
Unfortunately despite Francis Collins promise, the Trans NIH Working Group is no more serious about funding ME/CFS than it was in 12 years ago when it provided the same amount of pitiful funding (adjusted for inflation) for the Neuroimmune RFA that it did for the research centers in 2018.
Since it is our ONLY source of funds we are stuck. We are stuck with a funding mechanism that didn’t work in 2000, hasn’t worked since then, and has over the past almost 20 years decimated our chances for funding.
It was clear from the beginning that having a bunch of Institutes none of which had responsibility for this disease fund it was an exercise in futility. Someone has to be accountable. The buck has to stop somewhere. ME/CFS is still lost in the wilderness.
Why anyone thought it would be different this time I don’t know. So much for the NIH’s commitment to this disease!
(This comment was edited on 1/17/19 at Cort Johnson’s request.)
If Francis Collins is reading, I invite him and anyone else downplaying this disease and the scandalous health crisis we are in to read this too.
My personal comments added to the joint effort Massachusetts ME/CFS & FM Association, Solve ME/CFS Initiative and #MEAction form letter:
Thank you, Senator Markey, Representative McGovern and Senator Warren for your help.
Language and writing are very difficult for me now as I am very cognitively impaired. I will pay dearly in an exacerbation of my symptoms and suffering for having used my brain and energy to write this but it is imperative that I do so as so many of us are fighting for our lives and not nearly enough is being done for us.
People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) urgently need medical equality, research commensurate with disease burden; including decades of missing funding, knowledgeable and compassionate care, appropriate testing and treatments, livable benefits; including health insurance benefits that cover our needs, and hopefully a cure soon so that we can return to our lives before more people die; myself included, and before thousands more women, men and children become sick and disabled. We desperately need an end to the misinformation, stigma, bias, discrimination, neglect, abuse and harm that we have endured for decades.
Very severe and severe patients need home care and care through telemedicine and technology, and patients with ME/CFS need numerous centers of excellence throughout the U.S. with inpatient and outpatient care within reasonable traveling distances. We deserve the right of medical care just like people with other major diseases. Our lives matter! Our immense suffering matters!
I have been sick since 1983 when I had mononucleosis and a severe strep throat at the same time. I have been waiting 35 years for appropriate medical care! I have been bedridden from severe ME/CFS for a decade. I exist in a quiet darkened room in isolation, can barely speak little bits at a time, and I have a long list of multi-system symptoms that are overwhelming, frightening, dangerous, and extremely painful. Solitary confinement is considered a type of punishment and torture, yet people with ME/CFS are expected to live like this. I am so ill now that I no longer have any medical care beyond the hospital emergency room which hasn’t been helpful. The present state of care for people with ME/CFS is malpractice! I have no dental care and I unfortunately have very damaged teeth and a broken tooth despite having had years of dental care and not eating sugary foods. I have no eye care. I continually have to fight to maintain my meager disability benefits as though I’ve miraculously been cured even though my medical records indicate that I am “permanently disabled” and “never” expected to recover. I have again, recently and with no warning or explanation stopped receiving food stamps.
I would like to see a congressional investigation into how HHS, NIH, CDC, AHRQ, FDA, the Social Security Administration and other benefits administration systems have CREATED THIS PUBLIC HEALTH CRISIS.
I would like the misrepresentation of this disease and the promotion of bogus research investigated including the UK researchers involved with the PACE trial. Member of Parliament, Carol Monaghan, said about the PACE trial, “I think that when the full details of the trial become known, it will be considered one of the biggest medical scandals of the 21st century”. How were these and other researchers allowed to contribute to U.S. policy to the detriment of patient care and the very lives of patients? What roles have insurance companies played using poor quality research to deny benefits to very sick and disabled patients?
I would like to know why the NIH can employ researchers who believe people with ME/CFS have a psychosomatic illness and are catastrophizing; including the lead clinical investigator of the NIH intramural clinical study on post-infectious ME/CFS. Why can the NIH have an invited speaker from another country; at taxpayer expense, who believes ME/CFS is a “delusional somatization”? Why can U.S. medical institutes like the Mayo Clinic ignore U.S. recommendations and continue to follow the policy of the U.K. NICE guidelines which recommend graded exercise therapy and cognitive behavioral therapy? There are many, many, many things that need to be investigated. How sexism plays into all of this is another area of urgent inquiry. How did things get so rigged against people with ME/CFS?
I also believe that medical, psychiatric and psychological associations should be held accountable for their practitioners routinely harming patients and withholding testing and treatments by inappropriately psychologizing physical symptoms, conditions and diseases that require medical and not psychological care. I’ve been told that I’m depressed when I don’t meet the criteria, that I’m not experiencing what I say that I am as though I can’t feel my own body, that I have migraines because I have repressed anger and paradoxically that I have urinary tract infections because I’m “pissed off”, as well as the deceptive wild goose chase suggestion of childhood trauma that I can’t remember. I’ve even been accused of anxiety during a phone conversation with a doctor because I couldn’t stand and talk on the landline wall phone and I had to ask him to stop talking for a minute while I got myself to a chair to sit down as I was dizzy and couldn’t pay attention to what he was saying. During an appointment with another doctor, as I was starting to discuss problems that I was having at that time with my hands, the doctor completely shocked me by making a totally irrelevant statement about sending me to the registry of motor vehicles for a driving test! This was very bizarre as I wasn’t dropping the steering wheel! When he wouldn’t listen to me, I became very quiet so that I could leave as soon as possible which then earned me the diagnosis of depression by this doctor. I could go on and on with stories after being sick for 35 years. What I actually have is a neurological disease recognized by the WHO since 1969 and this gaslighting of patients has to stop.
Additionally, patients are owed a public apology from an appropriate official of high standing as well as a public statement from the Surgeon General regarding the severity of this disease. Both of these actions would significantly help to move things forward for patients.
THERE ALSO NEEDS TO BE REPERCUSSIONS FOR THOSE WHO CREATED THIS PUBLIC HEALTH CRISIS TO BEGIN WITH.
The decades of inaction that we have been denied recognition and cast outside of any standard of medical care that other people are able to receive have not been accidental and patients have paid for this malfeasance with their lives. Some of us, like myself, have also paid with the lives of a future generation of children we were never able to have. In my case, I am an only child and it greatly pains me that my branch in my family tree stops with me. My parents and grandparents and family over the generations haven’t sacrificed and struggled for me to end up like this. I have a family member killed by a Nazi soldier in Poland, but his sister, my great grandmother, made it to the U.S. to start a new life. I have another great grandmother who died during childbirth, but my grandmother survived. I also have some Blackfoot ancestry which predisposes me to a certain medical condition that runs in my family and makes me appreciate the struggle of my Blackfoot ancestors so that I can be here today. Yet, in this day and age, I may not make it because I can’t contact anyone in any modern way in order to get appropriate medical care and treatment. No more lives of those already ill, those who will become ill, and no more children who will never get to be born should be lost because of the politics of this disease; which are the politics of torture and of genocide and of indefensible excuses. It is as though we are living in some kind of alternate, surreal, Tuskegee-type experiment.
When most people get sick, they make an appointment and go to the doctor’s office for care and treatments. That we have to protest and lobby to try to get medical research, care and treatments should be criminal! I cannot stress this fact enough!!! I can’t believe that this is what happens in health care in the U.S. if you don’t have the “right” disease. I wish all citizens where aware of this as it is outrageous! The system is very, very, very broken and the NIH grant system doesn’t work if you don’t have a disease that they are interested in. Meritorious grants in ME/CFS are turned down by world class researchers like Stanford geneticist, Ron Davis, PhD, and Columbia virus hunter, W. Ian Lipkin, MD, for non-reasons like the assertion that the disease is psychosomatic, or reasons that actually go against policy, and with responses that don’t even make sense as though the respondent didn’t even read or understand the grant! Researcher/clinician, Nancy Klimas, MD, can get millions of dollars in funding from the DOD for her Gulf War Illness studies but she can’t get that kind of funding for very similar studies in ME/CFS from the NIH.
Furthermore, there aren’t nearly enough research centers being funded by the NIH. They had enough meritorious grants that they could have funded ten centers; which they even admitted, instead of three, and shown that they really are interested in growing the field and bringing in new researchers but they didn’t do that and our funding outside these centers has actually gone down. Tossing around a few millions dollars isn’t going to do anything when we need hundreds of millions of dollars in funding. When there isn’t funding, researchers don’t apply as it is career suicide. Also, when a disease is misrepresented and stigmatized, researchers don’t apply because they don’t even know that the actual disease exists to be studied. The centers that the NIH have funded aren’t even getting enough money to carry out the research that they need to do; which is a matter of known public record and was even brought up by W. Ian Lipkin, MD, during an NIH meeting. The Jackson Laboratory, who received NIH funding for one of the research centers a year ago is just now starting to recruit patients. This slow pace in our present circumstances is unacceptable. Sick and poor patients have to lobby, protest, raise awareness, donate, fundraise, pay for journalist investigation and we’re also supposed to draw in researchers according to the NIH. This is unconscionable. Patients have died and are dying doing this and the suffering to do this is immense. The job of patients should be to be patients. Medical care isn’t a popularity contest. It’s the job of our government to research our diseases and care for all of us, not decide who lives and dies, which is exactly what they are doing! I just want to get medical care and treatments like other people do. I need this to happen before this disease kills me or I end up homeless and die. Some research shows that patients are dying 15 years before the general population. Patients also die from things that are treatable because they are too sick to get medical care and there is a high rate of suicide in our community, even effecting prominent advocates who become too sick to go on.
I used to be a graduate student. I used to do a lot of writing. It has taken me five days of pushing myself to the max to write this with breaks when the migraines got too bad, the dizziness and nausea got too bad, when my eyes where burning too much, when I became so confused that I couldn’t make sense anymore or read and understand what I wrote. I write sentences and paragraphs and barley remember what I’ve even written about and I can’t remember the sequencing of what I’ve said. I’ve been having a lot worse gut symptoms for the past few months and I’ve had to take breaks because of these symptoms too. I’m not even sure how much longer I’ll be able to eat solid foods. At one point, I didn’t think I’d be able to finish this letter as the migraine, dizziness and flashing in my head became very severe and wouldn’t stop after a lot so rest. There was no position I could lay in that I felt safe or offered any relief and I had to keep a light shining on my closed eyes so that I knew where I was in space as the vertigo in the darkness was unbearable. After hours and without being able to eat, I finally fell asleep. Although crashed when I woke up, I ate and continued writing, rewriting and editing this letter. After I send this to you, fragments of what I’ve said here will float around in my inflamed brain for weeks like song lyrics that you don’t mean to sing, can’t remember the song they’re from and can’t get out of your head, even in your sleep. The hard crash will affect my holidays and weeks ahead. It’s torturous. This disease is tortuous. Being outcast from research and care and treatments is tortuous. Please, please, please help us!
People with ME/CFS deserve justice, urgently accelerated recognition, research, care and treatments NOW! Thank you.
Sincerely,
Laurie P____
P.S. Writing this letter has provoked my most common decade’s long recurring dream. It’s the one where I am in college and have to withdraw because I am too sick to continue, which is something that happened to me over and over and over again in real life. I paid for almost two degrees to get one because I had to withdraw so many times. It took me over a decade to get through college, piecing together all my credits and finally finishing in an accredited, primarily off-campus program. Since I believed the medical lie I was told; that people get better over time, with no indication that this might not be true, I thought at the very worst I’d have a master’s degree or doctorate and that I’d be able to support myself even if I could only work part-time. I am now punished in that I receive poverty level benefits because I didn’t work enough over the years I was trying to get better and get through college.
More importantly though, had I accurately been diagnosed as a minor when I got sick, and given accurate medical information, I believe my benefits would be higher today and I wouldn’t have damaged myself over all those years making decisions based on incorrect medical opinion. I had also married young and we had been able to buy a house with an inheritance I received and make the payments with my then husband’s full-time salary and my sometimes salary when I tried to work too. Without a complete diagnosis, prognosis and medical care, I got sicker and my husband left me. In an irony of ironies, my then husband, who is a lot older than I am, left me for a cognitive behavioral therapist he supervised at work and was cheating on me with. I lost the house. I also didn’t want to fight for who knows how long and at what cost to try to get alimony, so I didn’t because I always thought that I’d be able to support myself eventually. My ex-husband went on to have and raise a family where they lived in an almost 4,000 square foot home on several acres of “park like” land with an in the ground swimming pool, sauna, sunroom, Jacuzzi tub . . . while I’m bedridden, without healthcare, with elderly sick and disabled parents, and fighting for my life.
When the healthcare system doesn’t do its job, it can destroy every aspect of patients’ lives for the rest of their lives. I was trying to invest in a future I never had a chance of even having, being harmed every step of the way. I spent years in and out of college and sometimes trying to work, and I married and divorced not knowing I had a life-long incurable disease without any prenuptial agreement or fair divorce settlement. We need top down changes and accountability. As horrible as this disease is, the lack of justice is just as horrible too.
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Another death in my family and funeral I can’t attend. No funerals. No weddings. No baby showers. No gatherings. No visiting. No medical care. No life.
I’m not even well enough for a good cry.
All because our government agencies discriminate against people with ME as much as they can possibly get away with!