A FOIA and Jennie Spotila’s analyses indicate the NIH funding for ME/CFS is heading in the wrong direction.
Into the Dark Side
Researchers abandoning the NIH? Significant drops in funding? Who could have imagined it would have gone this way four years ago when Francis Collins, the director of the NIH, no less, asked the ME/CFS community to “Give us a chance to prove that we’re serious because we are”. ME/CFS, he said, was a priority.
Increasing Individual Research Grant Applications (NIH – Grade F)
“To increase funding in this field, there must be an increase in the number of investigators doing research on ME/CFS and the number of meritorious research applications submitted to NIH.” Walter Koroshetz– Director National Institute of Neurological Disorders and Stroke (NINDS).
Research grant applications are getting worse – not better – since the NIH launched its “reinvigoration” effort.
The most important objective of the “reinvigoration” and our most important need is to increase researcher-initiated grant applications. Seventy-five percent of NIH funding goes to individual research grants. Koroshetz has made the point many times that you can’t be successful at the NIH without them.
A Freedom Of Information Act (FOIA) request revealed, though, that, as of Nov 12th, the NIH Special Emphasis grant review panel for ME/CFS had received a total of 9 applications. That’s not for November. That’s for the entire year. With the grant review panels presumably finished, 2019 ended as 2018 and 2017 did – with the lowest number of grant applications for ME/CFS on record.
To be clear, NIH grants are essential because the big NIH grants – the RO1’s – are multimillion dollar, multi-year grants, the likes of which can be found nowhere else. As the NIH is far and away the largest medical research funder in the world, they also provide a devastatingly simple way to assess the productivity of a field. For one, the dauntingly complex applications require a major effort and a degree of sophistication on the part of a researcher. You have to have your “you know what” together to get one.
Somehow, though, despite all the interest, all the private funding, all the NIH’s promises, researcher interest in ME/CFS hasn’t gotten stronger in the four years since Francis Collins promised to make ME/CFS “a priority” – it’s actually gotten weaker.
Grant Applications Received at the ME/CFS Special Emphasis Panel
- 2011 – 20
- 2012 – 30
- 2013 – 16
- 2014 – 18
- 2015 – 26
- 2016 – 13
- 2017 – 8
- 2018 – 8
- 2019 – 9
Bootstrapping Not Working
The ME/CFS community is doing the best it can – it’s pouring more and more money every year into our research, but while private research efforts are keeping the research alive, they haven’t boosted the crucial grant application rates. In other words, this field is not showing any evidence that it can bootstrap itself to success.
In fact, everything that’s been tried has failed to entice researchers to put on their big boy pants and try and go get a major NIH award.
NIH Efforts Not Working
The 7 failed NIH Research Center applicants presumably had 21 near shovel-ready applications to throw into the mix – but didn’t. The 3 NIH research centers that were supposed to spawn a bunch of applications – haven’t. That poorly attended NIH Conference on ME/CFS that was intended to boost interest in ME/CFS – had no impact. The NIH’s attempt to get young investigators interested in this disease – apparently failed. Francis Collins’s and Director Koroshetz’s blogs on the need for ME/CFS research – completely ineffectual.
The “cross your fingers” and “click your heels”, and hope that 3 small research centers are somehow going to jump-start this field was dead from the get-go.
“We hope the Centers and other NIH efforts will attract researchers from other fields to propose research on ME/CFS…We believe the steps NIH has taken over the past two years will lead to a significant increase in the number of high-quality grant applications in the future.” Koroshetz – reply to Laurie Jones
Koroshetz is right that eventually the Centers probably will at some point result in a “significant” increase in grant applications but, at this point, 12 applications would be a significant increase from 9 applications a year.
Despite the fact that Koroshetz has repeatedly said that increasing individual research applications is the key to this field’s success, neither he nor Collins have done anything to move the needle on it. We all know what needs to happen – the NIH needs to put its money where its mouth is and produce an RFA.
Right now, the NIH appears to be on the same 10 year plan it’s been on for decades. Do something significant once a decade, close your eyes and wish for a miracle, and then do it again 10 years later.
Increasing Funding (NIH Grade – F)
Warning: funding may get worse next year.
Certainly we could have expected funding to grow but not surprisingly, it too, is declining – rapidly. Jennie Spotila’s recent overview, “NIH Funding for ME Needs Life Support“, showed that funding for investigator-initiated grants has declined by 25% since 2017.
Hold on tight, though, that number is likely to get worse – significantly worse – before it gets better. Jennie pointed out that three major five-year grants are in their last year of funding. If they’re not replaced next year – and replacing three major grants in one year is a very tall order for this field – funding will drop substantially.
Bringing New Faces To the Field (NIH – Grade F)
Another major goal was to bring new faces into the field but Jennie’s analysis indicated that over 80% of NIH funding is going to 7 individuals/groups – almost all of whom were involved in ME/CFS research before the “reinvigoration” began. (The sole new entry to the field is RTI – a data coordinating center for the research centers.)
- Jackson Labs/Dr. Unutmaz: $2,770,725
- Columbia/Dr. Lipkin: $2,241,807
- Cornell/Dr. Hanson: $1,849,848
- RTI: $1,176,919 (data coordinating center for research centers)
- Stanford/Dr. Davis: $762,949
- Ohio State/Dr. Williams: $568,411
- London School of Hygiene & Tropical Medicine: $539,019
The NIH has clearly failed to bring new faces to this disease – another top priority – not acted on, and certainly not fulfilled.
Bias Arguments Don’t Hold Up Anymore
There is some good news. The idea that NIH bias against ME/CFS is holding researchers back doesn’t wash anymore – at least at the ME/CFS grant review panel where the vast majority of ME/CFS grants go.
Jennie Spotila’s analysis found that ME/CFS grant application success rates there from 2011-2015 were substantially above the NIH norm. Plus it appears that over half the grant applications submitted last year were approved – a phenomenal success rate. (Note that bias is less likely to show up in the ME/CFS grant review panel than in other parts of the NIH.)
That’s very good news because if we can entice researchers to apply for grants their odds appear to be pretty good. Our biggest problem is not bias: it’s getting researchers to take an interest in this field and apply for grants.
Status Quo to Prevail for Now
Director Koroshetz’s response to ME Action’s letter indicated that, despite the fall in individual grant applications, the status quo will prevail. An RFA that would immediately increase individual grant applications – the only thing it seems that could do that – is not in the works.
The NIH set out its path 4 years ago and it’s not diverting from it. (Note that the NIH stated that it intended to reinvigorate ME/CFS research four years ago but it took almost two years for it to announce the awards for the Research Centers. )
The only positive points Koroshetz could point to were an upcoming program announcement (PA) and the strategy document. It’s not clear why the NIH, in the middle of its reinvigoration effort, allowed its PA to fail but since PA’s have never increased grant applications, expect this one to have no effect as well.
ME/CFS’s plight – a million sick people getting crap for funding decade after decade – has illuminated one of the great shortcomings of the NIH. The NIH relies entirely on researcher interest to determine what it funds, and has no mechanism to support underfunded diseases. It’s more of a gatekeeper organization than anything. Its role is simply to ensure that rigorous, well conceived grant applications get funded.
Because the NIH relies so much on researcher initiative, it’s set up to reward researchers associated with large, well-established diseases and punish those studying diseases that haven’t made it yet. Ironically, the poorly funded diseases don’t have the cachet they need to change the system.
That’s where politics comes in.
The Gist
- The National Institutes of Health (NIH) is by far the biggest medical research funder in the world.
- Private research foundations can’t begin to match the funding that the NIH can provide; i.e. it’s crucial that diseases succeed at the NIH.
- Four years ago, NIH Director Francis Collins promised to make ME/CFS a priority and urged us to watch them as they did so.
- Collins did dramatically increase research but only to the paltry levels ME/CFS had achieved before.
- In the 4 years since Collins’ announcement, the most crucial part of NIH funding – researcher-initiated grants for ME/CFS – have fallen dramatically.
- Funding has fallen significantly, as well, and may fall more next year.
- The NIH has failed, thus far, to bring new investigators into ME/CFS.
- Despite its failures, the NIH has stated it will continue with the status quo.
- Some bright spots are present, however. No evidence exists that bias is keeping ME/CFS grants from being approved at the ME/CFS grant review panel. In fact, grant success rates appear higher than normal.
- Advocacy – perhaps the crucial ingredient in getting more funding at the NIH – is stronger than ever.
- The strategic report initiated by Director Koroshetz could produce major results. Time will tell on that.
- Several intensive studies – the likes of which this field has never seen before – are wrapping up or are well underway. Each should provide new insights for this field.
- Solve M.E.’s International Patient Registry – an important step forward in building the infrastructure we need to understand this disease – is expected to open soon.
Send Dr. Koroshetz a Holiday Card (and ask him to end the NIH’s scrooge-like behavior)
Please join #MEAction in sending a holiday card to Dr. Koroshetz to let him know his recent plan for ME is not enough, and that our community deserves urgent ACTION after 30 years of neglect. Read ME Actions easy, 3-step instructions for sending Dr. Koroshetz a card, below.
Have your friends, family members and allies to send cards, as well!
Into the Light
That’s all bad news but the weird truth is that, in most ways, we’re actually in better shape than ever before. More is happening now than has ever happened before in this disease, and believe it or not, we are closer to a breakthrough at the NIH than ever before.
Advocacy – Our advocacy efforts are stronger than ever. ME Action is more well-funded and active than ever. We’re in year three of Emily Taylor’s five-year strategic plan to get Congress to push for more ME/CFS funding. The plan seems to be working. We have more support in Congress than ever before and that support is growing. Given the NIH’s intransigence, a political push is vital. (An interview with Emily is coming up.)
Strategic Report – Koroshetz did initiate the strategic report being produced by the Trans-NIH Working group. Because it’s coming from within the NIH, it could have enough oomph to get the NIH to get moving. Time will tell.
The Lyme folks, it should be noted, were absolutely thrilled to have their NIH-produced strategic report – one which was mandated by Congress, by the way. Rep. Chris Smith, the leader of the Lyme Caucus, was ecstatic to see it:
“After lagging for decades, NIH is all in for researching Lyme and other tick-borne diseases to better diagnose and treat those suffering from this horrific disease. This is great news for patients and Lyme-literate doctors who will now have serious, federal partners working aggressively to improve strategies for the detection, treatment, and one day, prevention of Lyme.”
The Lyme plan includes a number of intriguing focii, including determining the cause of an ME/CFS-like disease (post-treatment Lyme disease syndrome), better understanding the only known food allergy that can be induced by an insect bite (alpha gal syndrome), and developing rapid and direct detection diagnostic tests as well as vaccines and immune-based treatments. All of these will indirectly help us understand ME/CFS as well.
Let’s hope our strategic report will have a similar effect. Due date – sometime next year.
Research
The news at the NIH is not good, but in many ways, ME/CFS is stronger than ever.
The NIH is stuck but the ME/CFS community is coming through. The OMF just blew through its fundraising goal and Solve M.E. funded the largest number of Ramsay grants ever. The OMF-funded Harvard Collaboration is off to a great start with Ron Tompkins.
Four of the largest, most comprehensive studies ever done in ME/CFS have wrapped up or are underway. They will help us in two ways. They will point to beneficial paths to follow and they will block off paths we don’t need to tread down anymore.
- The OMF-funded Severe ME/CFS Study by Ron Davis constitutes the most in-depth attempt to get at the molecular foundations of this disease ever done, and it did so in a group – the severely ill – which is rarely assessed. Did the disease shine most brightly in them as was hoped? We should find out next year exactly what this effort achieved as the studies start rolling out.
- The NIH Intramural study, led by Avindra Nath, could provide our biggest win. This small, but incredibly in-depth, study is looking at different factors from the Davis study and contained an exercise stressor to boot. We’re on the 3rd year, I believe, of this 3-5 year project. In fact, this study is supposed to set the stage for two more initiatives. The plan was to first identify possibilities for study; second – dig more deeply into those possibilities; third – to attempt treatment interventions.
- The CDC’s Multi-site Study – this huge effort by the CDC assessed patients and treatments across eight expert ME/CFS clinics. We’ve been waiting forever, it seems, for the studies to roll out, but the data gathering is over and hopefully the studies are on their way, and will justify the huge amount of time and effort spent on this.
- The NIH research Center Collaborative Study – we don’t know how many people this collaborative effort between the three NIH Centers study involves, or what it will contain, but it could contain several hundred people.
The NIH Centers – over the next year or two, the three NIH-Funded research should be publishing a raft of papers. The Centers, themselves, will be up for renewal in three years. My guess is that the Centers will be successful, the NIH will renew them, and we will push hard for and hopefully get an increase in funding.
Solve M.E.’s International Patient Registry should bring new opportunities.
Infrastructure Building
Solve M.E.’s International Patient Registry – another long awaited project and a vital piece of infrastructure for ME/CFS will open soon.
Five NIH Initiatives That Could Help
Francis Collins may be pretty pitiful in moving the needle on ME/CFS but he’s superb at producing major initiatives. The NIH’s initiatives on exercise, pain (HEAL), the brain (the Brain Initiative), and peripheral nervous system stimulation (SPARC) all align well with our needs. As they clarify on a basic level how the brain works, what happens during exercise, how pain is produced, how to tweak the peripheral nervous system, and what’s happening in Lyme disease, they should provide insights into what’s happening in ME/CFS.
Of course, we will need researchers to apply those findings to ME/CFS…
Conclusion
Even as dramatic declines in research grant applications and funding occur, the NIH is standing pat. It has its five year plan and it’s sticking to it.
Inside the NIH, it’s looking pretty dark. Outside the NIH, things are looking brighter. We need to keep fighting….
The good news is that the ME/CFS field, including our vital advocacy efforts, is in many ways stronger than ever. Support for our research foundations is greater than ever before. With some very big studies underway and hopefully wrapping up soon, we should have some new findings to build on.
The NIH has a ton of money but it is not the be all and end all. Much excellent work that’s being done outside of the NIH could provide a breakthrough as well.
We don’t know how much of an impact the strategic report will make but the potential for a major breakthrough is there. That, in concert with political action, is our best chance for a major increase in funding.
- An interview with Emily Taylor – our full-time advocate with Solve M.E. – is coming up.
Health Rising Drive Update
Large or small, every bit helps.
Talk about funding needs! Health Rising needs your support to keep providing analyses like this. We’re about midway through our drive. Over 180 people have contributed. Please don’t think your support won’t help. The vast majority of our contributions are small amounts. They add up. Please consider throwing some change our way. Thanks!
Thank you Cort for writing this, people need to know how serious this is. You always do such a great job informing us, thank you for all you do year round for people with ME/CFS and Fibromyalgia.
I’m going to add some info here Cort, Ihope you won’t mind my doing so…
Any one who wants to send a holiday letter or Christmas card to the NIH , MEAction is trying to flood Dr Koroshetz with mail this holiday season. You can print out a holiday card from the notenough4me campaign, or simply write your own. We are hoping to get some attention from the NIH, and let them know that we are not “o.k.” with the paltry funding and lack of concern for people with ME/CFS, and we are not going to meekly go away either. Thanks to anyone who sends them a card…and,lastly, Happy Holidays to everyone! 🙂
Darn! I forgot to put that in! Thanks for the reminder. I will now.
Thanks so much Cort, we really appreciate it
Again there is sais that there are not enough researchers and research applications. I can not remember in witch webinar, but it was not long time ago, that ron davis said he had enough students or so willing to research cfs and he certainly said, never believe the NIH that there are no researchers who want to research cfs. and I do not believe the NIH. researchers are just getting no chance. There is enough interest from researchers!
It doesn’t make any sense to me either. We had seven research centers each of which had to produce three projects each of which could have been turned into a grant proposal and the result was – the lowest number of grant applications ever. All these other interesting projects have been funded and….we had 9 grant applications last year.
I just don’t understand it. I do believe the NIH is telling the truth, though. When we had more grant applications they reported them and I assume they are doing the same now. It’s actually in their interest to show an increase. They could say grant applications are up – see – our program is working.
Ron has certainly done his part – he’s applied for multiple NIH awards and his team was slated to apply for three more this year – possibly not though, through the ME/CFS grant review panel – as they were technological grants.
Everyone needs to read a Osler’s Web by Hillary Johnson. “A relentless, meticulous, and highly persuasive exposé by a journalist who spent nine years investigating the medical research establishment’s failure to take seriously” ME/CFS.
It’s a compelling read.
There is very much a bias in NIH grant reviews, namely they only fund confirmatory studies (where preliminary evidence has already been gathered) and not exploratory/discovery studies. We need the latter before we’ll get the footholds for the former.
Hence most potential researchers don’t apply for NIH grants and have to either get funding elsewhere (charities – which themselves have low funding), or not bother at all.
This is also in an environment where there is ever greater competition for funding. Look at https://report.nih.gov/categorical_spending.aspx and notice a trend across all categories for 2020…
Ron Davis talked about this issue in his talk with Llewellyn King on his ME/CFS Alert series, Konijn.
“that ron davis said he had enough students or so willing to research cfs and he certainly said, never believe the NIH that there are no researchers who want to research cfs”
“It doesn’t make any sense to me either. We had seven research centers each of which had to produce three projects each”
I have been working in two different research groups in the past. One big established one with international fame and one small one in a young and emerging field. The difference in both working there and getting research funded was immense:
In the big group, I applied for a research position and the professor I was applying with had a ready made and funded project waiting for a good researcher to take it on. In the first few years I had to write no single line for getting research funding at all. I just had to defend my progress a few times. The people finishing their Phd and having a deep knowledge on the topics at hand did write the proposals together with the professors. The professors themselves guided research and research directions but had no time to do any research anymore themselves.
In the smaller group, we had one larger research project and a few small side projects running each time. The survival of the group critically depended each and every year of getting a new large proposal approved. As each single large project had to succeed or we were out of funding (and job) every single year, stress and working hours were high. On top of that, we had to write every year multiple big proposals for research funding in the hope one would stick. We had no option but to do that during the many hours of over time we worked as there simply was no time within normal working hours to get that done.
Ron Davis could get enough students interested, but he is a very active researcher himself. He doesn’t take on a sole guidance role. Combine that with the demanding care for his son and him not being in his twenties and it’s clear he can’t write a lot of research proposals for them on top of that.
The prospective students on the other hand have far to few experience to write a strong research project on any subject let alone a very difficult one as ME in a reasonable time. Besides, if they did they had to work quite a long time for free and then have to wait unpaid for it being approved or not. Knowing the best students over there likely to can get a ready made and approved research project in an established group with plenty of people working in supporting roles (accountants, secretary, IT services, a filled lab and people maintaining the lab…) and immediate and guaranteed pay then the choice is often going that way. That expensive student loan wont pay for itself.
So we have a chicken and egg problem. Writing decent research projects requires plenty of time, experience and contacts. Time: my guesstimate here is easily half a person year of time. Number of project applications needed to get the group continuously working without getting in funding problems: 2 for the large group (larger buffer to average out) or 3 for the smaller group. So writing such proposal takes 1 to 1.5 person year on average. This is totally unfunded for. So either a research group is over budgeting current projects or someone has to do it for free. It’s a huge investment at least! Experience? It certainly helps to have done research on the subject in the past to better know what has good chances to work out well and to estimate and plan for what is needed to reach the goal. It’s near vital to have enough experience to write a top quality grant proposal. Contacts? When needing things to be done that require expensive equipment purchases or collaborations with other groups good contacts are required.
The above seems to hold back prospective students. As for the active research centers, they have to split their time and effort between doing research and writing grant applications. If they’re too small, they’re likely stuck in doing continuously overtime to getting research results and have near no time to write new applications.
That’s the sort of situation I thought was probably occurring, behind the scenes, in the research arena.
Nice analysis. I’ve heard that most research projects begin with half the work done – they use the funds from their last grant to get going on the next one. Once you’re in the pipeline you can start to do stuff like that.
Other diseases get young investigators involved, though. I don’t know why we haven’t yet been able to.
I reallu do not understand what the NIH has against us. when even ian lipkin just said how terrible this desease is. Ok, the psychiatry lobby, we had that. But still now??? why??? It is like they hate us. Peoplen, verry everelly people are dying of this. And not to speak about the suicides or euthanasias.
I really don’t think they hate us. I think its more that we don’t fit and the system doesn’t have an easy to help small diseases get traction. It doesn’t mean the NIH can’t do things like RFA’s – they did one for the research centers and they could do one for individual researchers. They’re just not willing to do that.
I don’t think we’re being blocked, though – we’re just not getting support – which is different. The grant success rate, after all, appears to be good. If researchers apply a decent number of them should get approved.
A great tweet from Dianne Feinstein! Our support in Congress IS building…
Senator Dianne Feinstein@SenFeinstein
Myalgic Encephalomyelitis and Chronic Fatigue Syndrome may affect millions of Americans, many of whom have not yet been diagnosed. I’m glad to support funding for ME/CFS research and grateful for the advocacy that @PlzSolveCFS
provides to promote its importance.
10:47 AM · Dec 17, 2019
Retweet it here – https://twitter.com/SenFeinstein/status/1206994266897162240?s=20
Great Article on the current happenings, Cort! Things are moving ! Stay Strong All and keep shouting and pushing!
When addressing your Senators please mention the RFA as being benefitically in place and don’t forget to send that ChristmasCard to the NIH at ME Action Alert! Christmas Blessings to All of U from me!
In a recent report I did hear: “Thanks to a substantial anonymous donation”
Yes, and this is a great example of how our community is powering vital research. The Open Medicine Foundation reported that and sent almost $400,00 to Ron Tompkins and the Harvard Collaboration to study David Systrom’s samples.
That’s a very exciting study done without any NIH support. In fact many excellent non-NIH funded studies are going on.
Could someone ask prospective researchers what is stopping them from applying for research grants for this evolving field of enquiry?
That would be so great to know…I think interest in this disease is up, there seem to be new findings regularly, more work is being done by private research foundations – if I was to guess I would think grant applications would be rising….
It’s a mystery to me.
It must have been hard, Cort, to deliver such bleak news right before the holidays. I thought I had learned more strategic ways to deal with disappointment and to not get my hopes up, but I must not have because this really hit me hard.
Could be the timing as my 32 year old daughter was just diagnosed with me CFS and I’m watching the NF tattooed with which she’s being treated by her general practitioner just like I was 12 years ago.
I need to have major surgery and I’m not well enough to even follow through with lab work that my doctor needs me to have done. Yet there seems to be no compassion or understanding that I need help in order to accomplish these things.
I’m still laying in this bedroom. No sign of it being Christmas in my house not even a tree was gotten for me this year. would have been a waste of money since I’m always in the bedroom I guess. I just want it to look nice and Cherry for my two small grandchildren when they come over Christmas Eve with my daughter and her husband.
Since I’m all alone I have to rely on help from the state but and now without any help for food since I can’t fill out my can’t think of the word every year or every couple of months now it seems like you have to turn in all of the information you turned in the first time you applied 2 prove that you still qualify for help.
I can’t get any help filling out the paperwork and I was too ill after a doctor appointment as it takes about three months for me to heal after every appointment at this point. so I am having days where I don’t eat at all because there are literally is barely any food here and I’m trying to make it last.
I can’t cook but I can grab a tube of crackers and the packet of tuna fish and eat a few crackers with tuna fish and drink some water every couple of days. It Feels
So bleak to live this way when so many people have been told how sick I am. I don’t know if this is a cultural crisis in general or if it stems from the idea that this is a psychological illness that is so firmly ingrained in people’s brains thanks to the CDC.
I begged my own doctor to look at the things that have have been released as I can’t read it and remember it but I know I read things in there that would help me. I have horrible gut problems. I’ve had it for years well my whole life and I’m 56. but I have severe pain in the same area every single day now and I am too ill to get to does CT place I am back here and into my home. it’s getting to where someone needs to be here with me because I can’t do things I need to do.
I was really counting on this NIH promise from Francis Collins. I’m afraid it’s too late for me but was hoping it wouldn’t be too late for other people including my own child. At what point can it’s still be called living when you can’t have food because you’re unable to fill out their paperwork and bring it in in person, can’t get food boxes because you have to go there. I can’t.
I can’t even have the discount from my electric company that other disabled household are able to receive because I have to literally stand in line as its first come first served and I guarantee you the young healthy poor are there in force early every time.
It’s really hard to feel so disposable. I see those commercials about abandoned animals left alone without food and water in a cage and it breaks my heart because I love animals. And it occurs to me that I’m in the same position except I’m indoors for now. I can’t believe I lost my food stamps and there’s no food and people in my world still don’t get how sick I am.
My recently diagnosed daughter keeps apologizing to me for not realizing how much I was suffering, and therefore not helping me out as now it’s happening to her. I told her it’s a hard thing for people to wrap their head around and that I don’t blame her or anybody. why would they think this was a serious disease if they’ve never heard anything about it?
And I can’t remember but I believe I shared but when I told my doctor I need her to read the new information that’s been discovered so that I could maybe get some of the treatment she responded with the words that I could just find another doctor and she wouldn’t mind at all. And I burst into tears in front of her to my humiliation and she didn’t soften one bit even though I said I don’t want another doctor that isn’t what I’m asking. She just repeated it again and before it was all said and done she said it four or five times.
I need to feel like a human being. I can’t remember the last time somebody I love even gave me a hug. Yes this was rough for me to hear. thank you for being brave enough to deliver the news regardless. I appreciate it so much and I know it costs you as all that work has got to be taxing. So don’t take this as a negative comment. this is just a human comment from one of many in this community that is trying to hold it together as we lay in dark rooms ostracized and forgotten, serving no purpose yet still breathing for some reason.
it’s not that this disease is cruel. It’s a human cruelty got a whole lot of people could sure help make things better if they would just take a look and check on that person they know is sick, that never leaves their front door and nobody ever goes in their front door. I would be a downright Christmas miracle! you have a Merry Christmas thank you for all your hard work. I cannot go back and correct the spelling and grammatical errors from speech to text. So please forgive me just this once for not even trying cuz I’m too tired.
Dear Maschelle, I’m so sorry you are so alone. Your words reach out to many people and I read your posts with interest and now today, with shock at your terrible situation.
I would guess you have many kind thoughts coming your way from the Health Rising community. I know that’s not practical help but I hope you realise that there are people out here thinking of you, whilst you’re stuck in there.
Tracey ♥️
Mashelle, I am sorry to hear of all you are going through. I or someone else will GLADLY send out a Christmas card from MEAcrion to Dr. Koroshetz at the NIH IF you would like me to do so (just let me or the organization know.) I could copy your above letter to Cort to give Dr. Koroshetz a vivid picture of the state of neglect that is all too often what a very severe ME sufferer is faced with or i can just send a simple card that says “not enough for me”! I am so sorry to hear about your daughters diagnosis….and your Drs treatment of you. I hope you somehow manage to find some holiday happiness, perhaps your grandchildren will bring you a little of that? I certainly hope so. I wish you the happiest holiday possible and hope you have a brighter 2020.
Cort wrote: “Who could have imagined it would have gone this way four years ago”
I vaguely recall cynical comments alleging that NIH has a ME public relations program, not a ME research program. Perhaps those predictions were correct. Maybe someday people will notice this and conclude that NIH policy is to not have a real research program.
Cort wrote: “Francis Collins may be pretty pitiful in moving the needle on ME/CFS but he’s superb at producing major initiatives.”
This is the headline. It should be in all caps in a very large font. In the meetings the NIH managers are all like, “Ah shucks, we’re doing the best we can…” They are constantly working to down regulate patient advocate expectations. Meanwhile the total NIH budget is over $30,000,000,000. Every. Year.
Maybe someday someone will investigate exactly who is setting NIH policy, and for whose benefit.
A public relations program instead of a research program! I like that. The NIH certainly does have an ME/CFS research program – they actually spend more money on ME/CFS than any other group – but sometimes it seems more like public relations than anything else.
Certainly Collins statement that the NIH is now serious about ME/CFS and that it’s now a priority – that’s all public relations. This is not what getting serious about a disease looks like.
While we do have to thank Francis Collins for more than doubling the funding for ME/CFS the fact is that funding was so incredibly low at the time he did that that the increase only brought it back up to about what it was before – during a time when Collin’s agreed ME/CFS was being neglected.
Collins injected about as much money in ME/CFS as Vivian Pinn did in 2006 with her RFA. I think Collins program is better conceived but it was still a paltry amount of money compared to whats needed. Even after all these decades it’s simply remarkable the resistance the NIH still shows to supporting this disease.
Ian Lipkin recently said that the NIH program is at about 15-20% of what’s needed to move quickly on this disease.
That’s why we need political action and there the news is good. Thanks to ME Action, Solve M.E. and others we are stronger and have more allies than we have ever been.
So who are the NIH accountable to?
Their current and past approach to ME/CFS is very clearly not effective enough – they continue to fail in their task in relation to promoting widespread research to help the people with ME/CFS.
Self regulation never works, as there will be too many blind spots in any type of organisation. It seems to me that the NIH needs to be investigated by an impartial team to establish what the issues are in respect of the current deadlock.
I presume the NIH’s colossal budget originally came from taxpayers, so it’s not their money anyway.
A bunch is school kids could figure out there’s a problem on their snack break.
I agree. Something is fishy here. Something stinks. Where is the impartial body? How is is possible that millions of people in a population can be cast aside and this allowed without intervention by good people. Remember what people tried to do to AIDS victims?
I just mean that the NIH seems to be unaware that their current strategy isn’t producing the end result they say they want.
Politicians….Some politicians are concerned when their supporters don’t get help or when the NIH is obviously neglecting large segments of the public.
They are the only one who can force the NIH out of its laissez-faire approach to the health of this nation and make them serve ALL the ill people in this country – not just those that researchers want to study.
Yes, political pressure is needed to expose the morally indefensible position the NIH is taking, on their lack of adequate sustainable support to invigorate research into ME/CFS.
The problem with ME/CFS “research” today is it’s being done by Doctors, not researchers within departments dedicated to our disease within Universities. The studies are mostly repetitive, small, non-controlled. Over and over I see exercise studies with pretty charts of interleukins….. When a recent drug for ALS was talked about numerous researchers from the ALS Departments of Prominent Universities spoke about the potential promise, as well as problems with the drugs. Our researcher, like Ron Davis, or Lipkin, are not part of ME/CFS Departments! Their work is outside their specialties or the University proper. Even back in the ’80s UCSF had a CFS Research Department, but it’s gone now.
To get real research, real respect we have to get our disease to the University level somehow. We need to get it out of the “doctors” hands like Bateman etc., and into the University. This should be one emphasis of people like Davis etc.,.
Hey, Cort! Did you include Dr Younger in your list of major grants?
The lack of individual grant proposals completely baffles me. Of course writing grant proposals is time consuming and difficult, but the same was true 8 years ago with double the number of proposals and a smaller likelihood of success. I wish that researchers would let us know what’s going on. My only speculation is that the lower number of proposals are for higher quality research. The current research is higher quality biomedical research and the psychologically based ones have been largely eliminated. Can we name biomedical researchers who are knowledgeable about our disease who are not receiving funding at this point? I know that people at ME Action and others have offered their assistance with writing grant proposals.
The 5 actions proposed by ME Action are certainly within NIH’s ability to carry out. I hope that the community can continue to keep up the pressure on NIH to enact those demands and come up with more. The lack of individual proposals is literally my worst nightmare.
=Interesting…I don’t know why Younger isn’t in that list as he’s received a major grant award recently. He’s certainly a bright spot – very active in putting in grant applications for the NIH and elsewhere and getting them.
As the NIH has rarely funding biopsychosocial research into ME/CFS anyway I don’t see that as a reason for the decline. Yours is the only one that provides a possible reason. Unutmaz, Hanson and Lipkin are running their centers – so they are probably not producing grant proposals – but that’s only three researchers out of the mix.
Baffling, baffling, baffling.
I was so sure that the seven research centers which didn’t get funded would boost the grant application rates dramatically but no. Maybe they got turned off by the comments on their proposals….I don’t know.
The overall ME research program is so broken that it can’t even keep new PhD’s that have already researched ME. About a year ago Fane Mensah, who studied B cells at a UK school, graduated and left the field. More recently I read a report (can’t remember where) regarding another new graduate that researched ME in school but has now moved on.
NIH and CDC always has plenty of money for conferences, reports, and plans to make plans but can’t scrape together funds for young researchers with proven experience? That’s just not believable even through the rosiest of rose-colored glasses.
That must be exactly what’s happening. The young investigators getting small grants aren’t sticking with us…The investigators and graduate students working on ME/CFS projects with ME/CFS researchers – there must be many of them – they’re moving on too!
There seem to be so many committed people now involved in working towards a brighter future for people living with ME/CFS, I believe there just have to be breakthroughs on the way.
Hopefully 2020 will be the year the UK officially reject the PACE directives!
In Ireland there are a group of people with ME, called ME Advocates Ireland, who have been working with the government here, to raise awareness of the illness.
There’s also a Working Group set up to further develop an understanding of the experience of people with ME/CFS.
The Irish ME Trust and ME Advocates Ireland are a part of this Working Group and I asked them to contact me, as I would like to participate. That may happen in the New Year.
I will also personally follow up with the parliamentary question that was submitted (and replied to) on my behalf by a local politician, in the Irish parliament.
I believe the ‘holiday’ season is particularly difficult for so many disadvantaged people. Some people love it and others dread it.
I’ve arrived late to the ME/CFS gathering, having had no idea what was going on – was just focussed on my bewildering array of symptoms and trying to survive.
I feel lucky that I’ve found ways to manipulate my system, so that I can function better.
I wish relief from suffering and fear for others too…
Of course patients have to be active participants as well. I just want to point out that this blog got the worst traffic of any blog in memory.
That is sad Cort, (about this blog entry having poor traffic) It must be that people are too scared or bummed out to read it, (or maybe it is too much to think about at this time of year?) but ignoring the facts does not make the facts go away…. I thought you did an excellent job summarizing the political state of affairs for us all, so that everyone is aware. If we are not aware of whats going on, it will be harder to fight for our rights. Sometimes I think that is what the CDC and NIH are banking on, us being too sick and beaten down to fight or take notice. I am not going to stop being a pest to the best of my limited abilities and I hope everyone out there continues to write letters ,make phone calls and help when and how they can. Most of us can’t travel and brain fog can be very problematic(to say the least), but lets keep trying our very best, especially those who can do even little things…little things multiplied by millions of people will gain us notice…. We as a community deserve so much more. Someone at MEAction made a point about what will we say to our children , or children’s children if they get the illness, we will be saying the same thing people have been saying for decades. The government ignored us and we still are in the same place. unacceptable.
I’m not going to stop being a pest either. It’s difficult to work so hard on a blog – it took me over a day to write that – and have it be mostly ignored but I will continue on and try to find ways to enroll people in keeping up with what’s going on at the NIH. It’s the one critical nut we have to crack. I’m confident that we will and when we will this disease will really see progress.
I for one really appreciate your hard work on this article and thank you for all you are doing to increase awareness and spell things out for us. You really are great at disseminating information so it is a little easier to understand (not that I always do, but at least I get the gist of a lot of science and statistics that I would otherwise not have any grasp at. You break it down for us. Happy Hollidays Cort! Perhaps people will re-visit this one and read it after Christmas. I hope so.
I also hope you get a substantial number of new donations to Health Rising, it is hard work and I think we are so lucky to have you in our corner. Please keep it up, you are the best resource this community has right now (in my opinion)
Thanks Jessica. Advocacy is a passion of mine. I will keep it up!
Happy holidays to you and thanks very much for the support “)
Oh, I think it’s a brilliant blog. As with anything that’s not working, we need to track back to see where the problem is.
Often this is enough to get the situation sorted.
But not in this case, with this illness. There’s no great sense of urgency to make sure the job gets done – whatever that takes.
My experience, in challenging the psychotherapists, has been that I have just had to keep plodding on, stating the obvious again and again and again…
I’ve learnt that no one will help me – I think they believe it’s nothing to do with them. There’s a lot of it’s Not My Problem. Actually I think it’s everyone’s problem just wait and see what’s revealed in the counselling/psychotherapy profession in the next decade or so…
So I think getting to grips with the nuts and bolts of what’s going on is absolutely crucial in finding strategies to help the millions of people who suffer-out of sight- on a daily basis.