Check out Geoff’s narration
The GIST
The Blog
VIcky Whittemore has been at the heart of the ME/CFS program at the NIH since 2015.
Vicky Whittemore is our go-to person for chronic fatigue syndrome (ME/CFS) at the National Institutes of Health (NIH). Besides overseeing the ME/CFS grants (study) portfolio since 2013, she and Joe Breen (NIAID) and the Trans-NIH Working Group are involved in virtually everything of consequence happening with ME/CFS at the NIH.
With several major events, efforts, and studies occurring, it’s a heady time for the ME/CFS field. The publication of the CDC study that dramatically upped ME/CFS prevalence, the recent NIH ME/CFS conference, the publication of the Intramural study, and the completion of the RoadMap effort all suggested that the stars might be aligning for ME/CFS at the NIH – and we might be ready to move forward in a big way.
Now was a good time to talk to Vicky. You can see the talk in the video below and/or read the overview below which cuts some things and adds others.
The Talk
Vicky talked about how she got started with ME/CFS (she started out small), how she supports the grant administration process, and how the removal of ME/CFS from the Center for Research on Women’s Health threw the Trans-NIH Working Group into her and Dr. Koroshetz’s laps. At that point, she got involved in strategic planning.
THE GIST
- Check out the video interview with Vicky and Geoff’s narration of the GIST on the blog.
- Vicky Whittemore is our go-to person for chronic fatigue syndrome (ME/CFS) at the National Institutes of Health (NIH). Besides overseeing the ME/CFS grants (study) portfolio since 2013, she is involved in virtually everything of consequence happening with ME/CFS at the NIH.
- With the publication of the CDC study that dramatically upped ME/CFS prevalence, the recent NIH ME/CFS conference, the publication of the Intramural study, and the completion of the RoadMap effort all suggested that the stars might be aligning for ME/CFS at the NIH – and we might be ready to move forward in a big way.
- I wanted to hear about that from Vicky. She believes there are probably more grant applications coming in than usual, and from people not involved in the field.
- Vicky noted that above all we need to get to clinical trials and reported something novel for this field – the possibility of NIH-funded clinical trials. She’s talked to several groups that have submitted applications, or are about to submit applications, for clinical trials for ME/CFS including small businesses that are attempting to get small business grants. “That’s exciting!” she said.
- Next we moved onto the former NIH Director Francis Collins. Vicky felt that Collins played a key role in getting many of the Institute directors to support the small research centers. The new NIH Director, Monica Bertagnolli is “very aware” of ME/CFS, perhaps more importantly, perhaps, Vicky said the new director of NIAID, Jeanne Marazzo, is very, very aware of ME/CFS and is very interested in this disease. Nice!
- The Research RoadMap is designed to move ME/CFS forward at the NIH. It’s an exhaustive effort to provide recommendations on how to move forward with the intent of producing clinical trials.
- Vicky discussed creating working groups, consortium’s, and roundtables to put the put the Roadmaps recommendations to effect. What about new funding for ME/CFS? Was the NIH going to finally put some real money to work for this disease?
- Not a chance. Citing currently budgetary problems Vicky essentially said the NIH will not provide funding for initiatives to move ME/CFS forward. If ME/CFS is going to move forward it will move forward organically.
- The NIH, in the end, is still broken with regard to ME/CFS, fibromyalgia and other diseases. It purports to be concerned with the health of all Americans and then neglects the health of tens of millions of people.
- The NIH is not immutable. People created the NIH and they can change it. The question is whether they will.
- While ME/CFS’s time at the NIH has clearly not finally come, the news for ME/CFS in general is encouraging. Interest in it and post-viral diseases is up significantly. Vicky feels the field has grown enormously since 2015, and I agree. By bringing together consortiums and think tanks together, Vicky Whittemore is doing what she can with what she has.
- The great question for Vicky and all of us, though, is when this increased interest will show up in the bottom line – increased funding. There is only one sure pathway to dramatic and rapid change for ME/CFS at the NIH, and that’s Congress and Vicky actually called for ME/CFS patients to go to their representatives and advocate for more funding for ME/CFS and the NIH as a whole.
- The RoadMap will be presented to the NINDS Council meeting by Vicky, Maureen Hanson and Lucinda Bateman during an hour-long session from 1:30 to 2:30 pm EST on April 15th. They did a tremendous amount of work on this effort, and you can watch them make their case for more ME/CFS research in a televised session here.
The next round of ME/CFS research centers has been decided and funded, and as soon as the Institutional Review Board (IRB) signs off on them, they will announce which investigators will get the funding. (Maureen Hanson, Derya Unutmaz, and Ian Lipkin led the last series of research centers).
Intramural Study – There was the intent to bring people back and enroll new study participants, but it didn’t turn out to be feasible. Vicky highlighted the functional MRI findings and T-cell exhaustion findings that replicated past findings. She emphasized – noting the T-cell exhaustion – that we really need to get to clinical trials, and getting to that point was the focus of the Research RoadMap.
NIH-Funded ME/CFS Clinical Trials?
Vicky then reported on something novel for this field – the possibility of NIH-funded clinical trials. She’s talked to several groups that have submitted applications, or are about to submit applications, for clinical trials for ME/CFS including small businesses that are attempting to get small business grants. “That’s exciting!”, said Vicky, and it is – my jaw pretty much dropped at that idea. (I know of only one NIH-funded clinical trial – Shungu’s NAC study – in the history of ME/CFS.) Time will tell if they will get funded – the funding environment is very tight right now – but it was good to hear that this is happening.
The Collins Effect and the New NIH and NIAID Directors
The Institute of Medicine report on ME/CFS came out in the mid-2010s. Around that time, investigators and advocates got NIH Director Francis Collins’s ear and he started looking into what the NIH was doing for the disease. NINDS Director Koroshetz got interested around the same time. All this resulted in ME/CFS moving from the Office of Women’s Health to getting taken under the NINDS wing (a bit). Seeking to move the field forward, the Trans-NIH Working Group came up with the idea of funding ME/CFS research centers.
Vicky reported that the new director of the immune institute NIAID, Jeanne Marrazzo, is very interested in ME/CFS.
Vicky felt that Collins played a key role in getting many of the Institute directors to support the small research centers. (Most of them provided quite small amounts, but it did add up. Once Collins left, several Institutes stopped providing even minimal funding.)
What about the new NIH Director, Monica Bertagnolli? Vicky stated that she is very aware of ME/CFS – and particularly so of long COVID. More importantly, perhaps, Vicky said the new director of NIAID is very, very aware of ME/CFS and is very interested in this disease.
That’s Dr. Jeanne Marrazzo. Dr. Marrazzo was formerly Director of the Division of Infectious Diseases at the University of Alabama at Birmingham. Dr. Marrazzo came to some parts of the recent Symposium.
Vicky asserted that where we are now, compared to 2015, is like night and day. We know so much more about the biology, there’s the long-COVID angle, and there’s a lot of cross-Institute discussion regarding broader initiatives on post-viral issues. Awareness is way up but funding… that is another story.
The RoadMap
The Research RoadMap has been an effort by NIH representatives, ME/CFS researchers, patients, and advocates to take an exhaustive look at ME/CFS biology and provide recommendations on how to move forward with this disease with the intent of producing clinical trials. Led by Vicky, Maureen Hanson and Lucinda Bateman, the RoadMap produced 8 day-long webinars in what was surely an exhausting endeavor as well.
The massive Roadmap effort produced a strategic plan to help ME/CFS move forward at the NIH.
Assuming that the NINDS Council approves the RoadMap, it will fall to a group of Institute representatives called the Trans-NIH Working Group to find ways to implement the its recommendations. Vicky discussed creating working groups, consortium’s roundtables. Vicky thought, for instance, that creating genetics consortiums to pull together all that genetics information could lead to clinical trials. If the group found that a gene controlling some part of the immune system was defective in ME/CFS, the group would look for treatments that could bolster that part of the immune system.
The idea is to spark interest and in that vein, Vicky mentioned Paul Hwang an NHLBI researcher outside the field who stumbled upon a balky gene variant associated with the mitochondria, linked it to ME/CFS, ended up producing a potentially important paper on ME/CFS, and is now attempting to get a clinical trial underway. The key, Vicky said, is validating that variant. Many times if you find a gene variant, you’ll find a group of researchers studying that variant.
That happened for her with tuberous sclerosis where two genes involved in a cancer-related pathway opened the door to cancer labs, which quickly resulted in clinical trials and an approved drug.
Dashed Hopes
That was all good, and yet the news was not all good. When Francis Collins announced the creation of the Intramural study, he said the NIH was looking for solid evidence it could act on. That was why the study went to incredible lengths to make sure they had ME/CFS and only ME/CFS patients in the study. The NIH said it needed solid data to move forward – now the NIH – not a group of outside researchers but NIH researchers – have provided it.
I took that to mean that once the intramural study was done, the NIH would provide funded grant opportunities called RFAs to explore those areas that draw researchers to them to like bees to honey. They are what a struggling field like ME/CFS needs to build momentum. Absent something like that, it’s hard to see how the ME/CFS springs forward at the NIH.
They are not going to happen, though. If there ever was a plan to use the Intramural study findings to support significant new funding for ME/CFS, it’s long gone.
ME/CFS Non-Profits Asked Again to Help Move the Field Forward
When I asked explicitly what will happen after the RoadMap, my heart sank when Vicky first turned to an old theme: having ME/CFS non-profits use the RoadMap to help move the field forward.
The NIH has been asking the tiny, tiny ME/CFS non-profits to move this massive and complex field forward for decades. It’s remarkable to see a $48 billion institution ask our little non-profits to move the field forward, but that’s what it’s done almost from day I. Our non-profits can’t begin to fill the enormous gap between what’s wanted and needed, and what we have now.
It’s not as simple as another rejection of ME/CFS hopes. NINDS – the Institute Vicky works for – is in the midst of a budget situation.
Bad Budget Situation
Reduced funding means fewer grant opportunities and fewer initiatives. (Congressional action resulted in a nice boost for Azheimer’s research, though.)
As for the NIH directly supporting ME/CFS, Vicky referred to the challenging budget situation NINDS is facing in 2024 and probably 2025. The overall budget for the NIH remained flat in 2024, and NINDS received a small increase – which was not enough to account for inflation – resulting in an overall drop in funding. Plus, the big Brain Initiative received a major funding cut.
At the end of April of this year, NINDS Director Walter Koroshetz alluded to the “difficult decisions” that needed to be made given the “challenging budgetary landscape” and the lower-than-usual 11% payline (only 11% of best-scored grants get funded) that had to be instituted. Fewer grants will be funded this year and some already funded grants will see (probably modest) reductions in funding.
While the NIH website states that funding levels for most diseases are expected to largely stay static or increase slightly, the Brain Initiative received a whopping 40% cut, which hurt NINDS in particular. The funding cut resulted from the strange funding mechanism created in the 2016 21st Century Cures Act which provided fluctuating levels of support from year to year. This year, funding for the Initiative from 21st Century was due to drop dramatically. In the past, Congress stepped in to backfill the shortfall, but the budget caps agreed to last spring made that impossible, so funding was cut.)
For me, though, the budgetary argument fell a bit on deaf ears. While the opportunities for funding are clearly harder to come by in this budgetary environment, I’ve seen ME/CFS funding drop dramatically drastically during times when the NIH was flush. NINDS funding, for instance, has grown by $1.2 billion over the past ten years and is now at $2.8 billion.
The NIH-Funded ME/CFS Research Centers
The NIH spends about 80% of its funding on investigator-initiated grants; i.e. grant applications that come from outside the NIH, leaving 20% for initiatives that come from within the NIH. The ME/CFS research centers, for instance, came from that 20%.
When asked about using some of that 20% for ME/CFS, Vicky noted the difficulty creating new initiatives now but not to stop thinking about longer-term initiatives that could be possible in the future. She noted again how encouraged she was about the interest small businesses are showing in this disease. Being creative with what we have was a theme.
With regard to the proposed Office for Postviral Diseases, Vicky noted that the Office could help coordinate research but that the funding would still come from the Institutes (of which neither ME/CFS or long COVID is a part of). Noting the strong interest being shown by Institutes across the NIH, being able to coordinate research across the many Institutes that are now interested in post-viral diseases would be a big win.
Broken Institution
The NIH is clearly broken. Any institution that purports to have as its goal enhancing the health of the nation, yet which deigns to provide sufficient funding for tens of millions of people (ME/CFS, fibromyalgia, IBS, POTS, etc.) in that nation is broken. The problem is how the NIH is broken. If it was broken for a major disease, the problem would be fixed, but it’s broken for diseases like ME/CFS and fibromyalgia that don’t have the clout to fight back – so they’re stuck.
If the NIH was committed to significantly increasing funding at the NIH it would keep at it until it found something that works. Maybe the Roadmap and the intramural study will spark something – let’s hope so. The ME/CFS Research Centers were supposed to increase researcher funding, but funding for ME/CFS, if it hasn’t dropped, has been as flat as a pancake since they were announced.
The NIH may now have a strategic plan to fill the many research holes in ME/CFS, but does it have a long-range strategic plan to boost ME/CFS funding? Something like, the NIH is committed to boosting funding for ME/CFS by 30% by year X – and if it doesn’t happen, it retrenches, figures out why, and moves forward again. Absent that kind of a commitment, we see a stab here and a stab there (they tend to occur about every ten years) and little progress is made.
For reasons that we still don’t fully know, the NIH is structured in such a way as to make it very difficult for diseases like ME/CFS or fibromyalgia to make headway. (In the 2014 Mangan interview, I noted that Lipkin and others stated that both Collins and Koroshetz’s hands were tied when it came to ME/CFS).
Like any other organization, though, the NIH is not immutable. The way the NIH is was not handed down from heaven on tablets of stone. The NIH is what the people in the NIH say it is. If it’s not working, they can change it. I would suggest they’re at least obligated to the millions of people with chronic, debilitating post-viral illnesses to try.
Whatever the justifications for keeping the status quo (e.g. “It’s impossible”, “it’s just the way things are”, or “look at how well we’re doing in other areas”), the bottom line is that the NIH has shortchanged a generation of millions of people with chronic illnesses and everyone working at the NIH has to deal with the fact that they’re part of that.
Congress
“We need patient advocates to be out there saying Congress we need more money for ME/CFS research and NIH funding overall.” Vicky Whittemore
While ME/CFS’s time at the NIH has clearly not finally come, the news for ME/CFS in general is encouraging. Interest in it and post-viral diseases is up significantly. Vicky feels the field has grown enormously since 2015, and I agree. By bringing together consortiums and think tanks together, Vicky Whittemore is doing what she can with what she has. The great question for Vicky and all of us, though, is when this increased interest will show up in the bottom line – increased funding.
There is only one sure pathway to dramatic and rapid change for ME/CFS at the NIH, and that’s Congress. That’s what Ian Lipkin – who knows the NIH well – said ten years ago and that’s what he repeated at the recent Symposium on the Intramural study.
Vicky believes so as well. Noting that the budget situation may be even worse in 2025, Vicky said, “We need patient advocates to be out there saying Congress we need more money for ME/CFS research and NIH funding overall.”
A couple of weeks ago, Lipkin said we need “better advocacy” at the congressional level, and we do. During the last Advocacy week, I was the only person present at the five meetings I had with Congressional staffers. Advocacy Week – now run solely by the Solve ME/CFS Initiative – is our one big opportunity to make progress where it counts the most – at the federal level. That’s simply where the money is. Even in this difficult budget environment, Alzheimer’s disease got a nice boost in funding – thanks to Congress. The NIH’s 47-billion-dollar budget dwarfs – as in, its not even close – any other medical research funder. It’s a nut we must crack at some point.
Lastly, Vicky said that working closely with the ME/CFS community over the past year has been one of the most rewarding and meaningful experiences of her working life. She said she read every one of the thousands of comments provided.
The RoadMap Presentation
The RoadMap will be presented to the NINDS Council meeting by Vicky, Maureen Hanson and Lucinda Bateman during an hour-long session from 1:30 to 2:30 pm EST on May 15th. They did a tremendous amount of work on this effort, and you can watch them make their case for more ME/CFS research in a televised session here.
Through my brain fog I think you’ve written that the NIH is going to continue relying on mecfs nonprofits and small scientific efforts (which of course are helpful, but can’t be trusted until large scale work can be done), rather than stepping up themselves with a large organized funding effort. Devastating. I’m devastated. I hope Bernie Sanders’ proposed bill will help drive action and I hope Monica Bertagnolli fights for us.
Yes, you got it! I thought the whole aim of the intramural study was to build a new research foundation that the NIH would plow money into. That it would finally “get serious” as Francis Collins promised back in 2015 but no. This is not to take away from Vicky and Joe Breen’s hard work or the opportunities that Nath’s work and the Roadmap will open up – or Vicky’s genuine excitement about where we are but my expectations were vastly different from what actually occurred.
It’ll be interesting to see how the NINDS Council responds to the Roadmap presentation – which takes up much of the agenda that day. I remember a Council member five or so years ago saying “I didn’t realize ME/CFS got so little funding”.
DEVASTATED was my reaction, too. I quit reading at this point.
Thank you, Cort! I apologize if this is a stupid question but with the limited energy we all have, can you tell me what the best, most impactful, specific and direct ways are to reach out to Congress.
If someone were to tell me, do this, then I’d do it in a heartbeat.
Shea, the easiest way to reach out to your congresspeople is to email them. Go to https://www.house.gov/representatives/find-your-representative and enter your zip code to send an email to your Representative. Go to https://www.senate.gov/senators/senators-contact.htm and put in your state to email your senators.
They don’t have to be long emails… just tell them what issue you are bringing up and what you want them to do about it (ie: vote for more funding for ME/CFS/Long COVID research).
Thanks!. One thing -when Advocacy week comes around please participate in it. This is the one major effect Solve ME makes every year to affect ME/CFS at the most important level – the legislative level.
Solvecfa has a easy and quick ‘contact your reps’ at https://solvecfs.secure.force.com/actions/kwac__takeaction?actionId=AR00094
I’ve been appealing to get my disability approved since 2017.
I need an official diagnosis from a doctor who can confirm it, confirm the severe fatigue for the 3rd judge to hear my case. I’m in St Louis, can’t find a Dr within 600 miles.
Does anyone have a suggestion?
My PCP is trying to help, 23 specialists also, but none will do an affidavit or similar letter for whatever reason .
Please and bless us all.
Here is the best website you will ever find that goes over every single aspect you could possibly imagine having to do with disability, getting on government help programs, and 1 million more things! Definitely save it and go through it thoroughly because there’s more there than what you would think. Every single one of us has gone through a extremely hard time getting approved for disability, everyone gets denied at least one or two times and what I can recommend from experience is get a lawyer, they will take the amount that you owe them from the back pay that you will get once you get accepted for disability finally!!! Also the most important thing is every single doctor appointment you go to you MUST make sure 100% that the write up their “doctors notes” CORRECTLY!!! 90% of them don’t and also it MATTER VERY MUCH SO HOW YOU ANSWER QUESTIONS such as when they walk in the room and ask you a simple question like “how are you”? Based off of you saying the most common thing which is good, that right, there can completely screw up the doctor visit and trust me when I say, they add every single little thing that you say to your “doctors notes”!!!!! If you mention ANYTHING personal even though you may have a good relationship with your doctor… they will write all of the personal things you talk about IN THE DOCTOR VISIT NOTES… then disability WILL use that against you! So when they walk in the room and ask “how are you”? Don’t say “I’m good how are you?” because disability will take that and use it against you… claiming that your health is good! It’s INSANE but true! Then like I said anything personal you mention such as a family member or friend coming over to see you or having your family member/friend over and they were there to visit with you check on you and see how you’re doing, and you decide to eat a meal together or whatever while they are there… The doctor writes that in your notes for whatever weird reason even though it has nothing to do with your health or why you are at the doctors and disability WILL use that against you thinking you are magically a healthy person and able to do activities etc so you have to be extremely aware of every single thing that you say because it will be taken the wrong way, and used to deny you!
95% of the time the doctors don’t do the notes correctly and then for the ROS “review of symptoms” that they check off every time you visit going over things like weight, temperature, coughing, breathing, vision, throat, pain ETC (sorry my brain fog is bad right now) they will NOT UPDATE IT at every visit and the computer defaults to whatever boxes were checked in previous visits the last time they updated it and then it makes your current visit or problem that you are there for at that visit end up wrong because maybe they put your symptoms in the doctors visit notes BUT they didn’t update and change the ROS part so then when disability goes over it, they get the wrong information and the wrong impression and then that will count against you as though you were there but not seen for a certain reason and everything’s fine when really it’s NOT! So, for example, I had to go through all of the doctors notes from every single visit and every single doctor and have them update and change and correct things and actually put in the visit notes what I was there for what were my issues and symptoms etc etc and let me tell you it’s a freaking nightmare! Getting anyone to fix anything these days in your records or to even return a voicemail is extremely hard so doing all that takes a lot of time, and we are all too sick for that!!! It made me extremely sick and took several months going back and forth and then going back over things to see if they actually corrected it and then making sure disability had the updated correct records etc AFTER ALL THAT you then need to make sure that after every single doctors visit you go to, that did the notes properly and included everything in their notes in a DETAILED fashion aka DOING THEIR JOB CORRECTLY, it’s ridiculous having to ask this!!! Sometimes doctors will have them done the same day of your visit, but more than likely it takes a couple of days, but make sure that you stay on top of that so it never happens again. There are MANY OTHER THINGS so follow this website https://howtogeton.wordpress.com/social-security-disability/
Good luck… it’s a SHAME that we are denied and put through so much to get approved when we are this sick!!!!!
Thank you ftom my soul for using up so much of your energy to reply.. Thank you and yes, solid advice. I am on my 5th disability lawyer, and a few months ago I put energy into ensuring the doctors notes were on point. I have so many doctors just going to them, rescheduling on crashes, is exhausting. Now before I leave the apt, I read the notes (except as you noted some do it later..) and i hope this will help. thank you kindly and I hope you find peace and help for you.
Hi Rob – Before I became unable to work, I worked for legal aid representing people appealing denial of disability applications. (Back then legal aid wouldn’t take a case until the appeals stage because of resources.) Even if you’re not eligible for legal aid, the offices used to have a lot of helpful information about the process, so you might want to reach out and also how you could find a doctor closer to you. And here’s a pro tip: collect as much recent documentation about ME/CFS as you can find, such as the Mayo Clinic’s guidelines, to have your attorney present along with your application (and bring your own copy and an extra to any appointments in case this documentation gets separated from your other paperwork.) For so long ME/CFS wasn’t treated as a “real” illness, and it’s good to make it easy for the “deciders” to educate themselves. Good luck. It’s a horrible, inhumane process,
Thanks. One problem I have to TOO much paperwork going back 8 .. my attorney wants to minimize paperwork submitted to make this as easy for them to decide as possible. The higher court remanded it and laid out what needs to be answered – mostly the fatigue aspect. I have been unable to gett him to want to add additional paperwork, I suppose I could upload it myself to the portal? Curious your thoughts on this, and thanks so much!
typo April instead of May on roadmap presentation date…it’s tomorrow!
fixed
Why don’t ask the Bill and Melissa foundation for finance?
https://www.gatesfoundation.org/
Given the similarities ME and LC have with post-Polio illness, this seems like a promising way forward with the Gates Foundation: https://www.gatesfoundation.org/video/bill-polio-survivors
As ever the issue is that so many of us are way too ill to be able to take steps to get us ‘in’, but I’d sign something if anyone is more able than I am to have a go!
me to
I’ve been told that this has been tried. They apparently have no interest. The big funders are not interested in us not yet! Former Solve ME/CFS leader Carol Head
https://www.healthrising.org/blog/2019/07/27/straight-talk-carol-head-solve-me/
Hi Cort,
Thinking about everything I read lately in your articles about the wasted funding at NHI and other ressources for ME/CFS, LC etc., I think something real and successful will only happen when a very close relative of Bill Gates, Elon Musk, Warren Buffett, Steve Jobs, Mark Zuckerberg and other big cheese will get this health problem. Then, be assured money will pour rapidly and they will make sure it is not wasted in stupid studies already done but rather on real promising roads.
I guess the one good thing we and long COVID have going for us is lots of people have it. At some point someone close to the wealthy will. On that note Vinod Khosla has been funding a lot of research.
as far as i could read, this, it is all such devistating news. heartbreaking. in the 30 years of my illness i got so many promisses, everytime nothing…falls hope, falls beliefs, broken promisses….
they called us the lost generation and that is what we are at my age. and before that lost generations and you can go on and on…
now non profit organisations must do it with barelly money and even then it is not good enough. I allways looked at the US, hoped, etc
It is certainly not what I hoped for. In general I think the pathway continues to be upward – just not as rapidly as we hoped.
you try to stay always so positive… I am way to long way to severe…
and if i think of all the promises made, in decades, when i still could read more. could watch a congres/webinar. Do you remember the Dubbo study? So long ago…just broken of like all the rest. How many hopefull blogs have you written Cort? for decades. Even stil i thought for phoenix rising… Incredible…
All of it really adds up to yes, slow but still progress – we are always making progress. Not the kind of progress that says take this drug and get better or to get a big boost in funding but so far as learning what’s involved – I think lots of progress. That’s why I’m hopeful – it seems like every day I see progress somewhere.
At the Roadmap meeting Vicky dropped a funding opportunity is coming up. I don’t know why she didn’t speak of it when we talked – and she said she couldn’t say more when I emailed her – but something is in the works….:)
Wow, I hope it is true. But first see and then believe 🙂 Top secret… 🙂
The date at the end of the article for the Roadmap should be May 15, not April 15.
Sorry, brain fog. Let me see if I understand this correctly. The NIH all but ignored us for decades. Now, they’ve done an intramural study with some good findings, yes, but somehow, they couldn’t or wouldn’t do a 2 day CPET; a proper full spectrum of autonomic testing; or a large enough patient sample because it wasn’t ‘feasible’.
Now, they say the disabled M.E. patients will just have to work harder to get them more money for NIH’s incredibly slow, and deeply flawed work. It’s our fault. It’s our problem. Again.
I asked Ian Lipkin for help in being a better advocate. He wanted to connect me to professional lobbyists. I said yes, and haven’t heard from him since.
I sat three feet from Vicky Whittemore at the recent NIH Symposium. She never once lifted a finger to meet the three patient advocates there, or address our concerns directly. Instead Dr. Walitt gaslit us about study design flaws.
Here’s my take
Intramural study would have been completed if not for the pandemic – we got unlucky there – on the other hand we got long COVID – which was more valuable in the long run.
I wanted the 2-Day CPET. It was intended to be part of the study, I believe but it was too much for the patients – some of them who were very, very sick (one had to be sent from test to test on a stretcher). Throwing that in the middle of the already long stayw was too much and, in retrospect, too much to ask for.
Yes, the NIH is once again asking the little non-profits to help out. No argument there.
Lipkin is a busy researcher – the best thing we can do is participate in Solve ME’s Advocacy Week. Solve ME is where to go for work on the legislative end.
Vicky Whittemore worked her butt off during the Roadmap Initiative, said she read thousands of emails regarding it, decided to include patient’s stories in every session and has been very helpful. I hope you can forgive her for not meeting with those advocates.
From what I can tell Walitt has been praised by everyone – including patients – who have worked with him. Check out the Symposium overview for that.
I wish I could tell her not to approve funding for UF Health/ University of Florida. They are making people worse. They believe me/cfs is Fibromyalgia. They diagnose me/cfs as Fibromyalgia all the time and say that the criteria of positive pressure points for a Fibromyalgia diagnosis is out dated. Then prescribes Graded exercises therapy and mental health therapy thinking that it will fix us. When we get worse because of it, they will diagnose us with a faking disorder. Then no doctor at UF health will see us. Not even to monitor a previously diagnose and continuously growing thyroid nodule. There is no other medical system that takes state insurance though (I can’t work because of their “treatment”).
I’ve been appealing to get my disability approved since 2017.
I need an official diagnosis from a doctor who can confirm it, confirm the severe fatigue for the 3rd judge to hear my case. I’m in St Louis, can’t find a Dr within 600 miles.
Does anyone have a suggestion?
My PCP is trying to help, 23 specialists also, but none will do an affidavit or similar letter for whatever reason .
Please and bless us all.
Sorry to hear that Rob. We will have a map up on the website soon that will help people identify better doctors.
Good to hear I’ve consolidated all the doctor’s lists on similar sites to no avail. I should have started by saying this was a very informative article, thank you for keeping us updated.
I wish I could find ways to help educate my local doctors so someone here could help. I have found a local COVID support group. Thanks again
I nearly cried when I read this article. No more money or even hope of more, even now afyer all this! Means no large scale studies (so badly needed) because the charities can’t fund those.
None of the really high quality studies at large scale that could cut down on the vast long time frames in the progress – if we could do studies where large cohorts are subdivided into various groups forming comparisons (severity, length of illness, male versus female, comorbidities, etc etc etc) this would improve the validity of the results. How many times do you read “small cohort reduces the statistical significance of the results” or something around it.
Heart breakingly disappointing. And as a severe patient stuck in the UK, we have our eyes turned your way in the US, because our own government is hopeless, and funding is limited anyway by our size. We have our decode ME study which we’re hoping will bring some answers to move things forward, but it’s unlikely to bring about funding changes even in the best of circumstances. The NIH is powerful and massive, with an enormous budget. They’re quite literally the hope for all of us.
Just having to wish and hope for some highly unlikely piece of pure luck, that drives his forward to treatments quickly, a finding that revolutionises the field, and brings in private companies interest is like wishing to win the lottery.
FINALLY! ME/CFS is getting desperately needed research and funding! This disease has taken over the lives of so many people with no Hope on the horizon of new treatment and understanding of what it is like to live with ME/CFS! Thank you so much I applaud your efforts!
So same old story. Some small reasons to stay hopeful, but overall bleak af for MECFS.
Wake me up 500 million years in the future when it’s finally been solved.
Thank you Cort…. I absolutely love that you have the new function at the top with the play button and in BOTH full version and the gist 🙂 the only suggestion I would have would be for it to have the option to choose the speed that it reads it to you like 1.5 and 2 X speed. THANK YOU FOR YOUR HARD AND DEDICATED WORK!!!