The Hunt for More Funding For ME/CFS
This is the fourth in a series of blogs on advocacy topics as we enter into the prime advocacy period of the year.
- Study Finds ME/CFS Most Neglected Disease Relative To Its Needs
- ME/CFS Experts Speak Out in #MEAction’s Long Covid Media Conference
- Time to Strike! Sign Up for a Monumental Virtual Lobby Day
The ME/CFS Research Community Shows Up
No funding – no progress. It’s as simple as that – and the news is not good for chronic fatigue syndrome (ME/CFS). A recent blog highlighted how, relative to its needs, ME/CFS is maybe the poorest funded disease in U.S. If ME/CFS is going to move forward in a meaningful way, in a meaningful timeframe, it simply needs more funding – lots more funding.
In that regard, 2020 was the best of years and the worst of years for ME/CFS research. Perhaps the field’s most crucial need – the need for researchers to apply for apply for grants in abundance – finally showed signs of being met. Given what happened over the past three years, that was a shocker. During the three year span from 2017-2019, ME/CFS researchers had applied for the lowest number of NIH grants in memory (@ 8 yearly).
ME/CFS Funding Worsens As NIH Maintains Status Quo – Health Rising
A Freedom of Information Act (FOIA) request indicated that ME/CFS grant applications to the NIH (18) were up significantly. Plus, in a truly remarkable burst of activity, ME/CFS researchers – mostly from the Open Medicine Foundation-funded Harvard and Stanford ME/CFS Collaborative Research Centers – poured in over 2 dozen grant applications into the Congressionally Directed Medical Research Program (CDMRP).
More ME/CFS researchers applied for more grants last year than in any year in memory.
That was real progress. The NIH has asked the ME/CFS field to pull itself up by its bootstraps for decades, and last year it did.
Just five years ago, Ron Davis was beating the bushes to get researchers interested in ME/CFS. Now we have many more researchers than we can fund interested in this disease.
Davis’s recruitment of Ron Tompkins at Harvard was a particularly important step. Even at Harvard, Tompkins has stood out in his ability to get grants. Over the course of his career, he’s managed to obtain over $200 million in NIH grants.
Tompkins so quickly enrolled a large cadre of interested researchers and doctors in ME/CFS that by 2019 he reported that, if he had the money, he could fully staff and run a Center of Excellence for ME/CFS.
“The COE… would be extraordinarily well-supported by a very large group of extremely knowledgeable and committed clinicians and investigators at the Harvard-affiliated Hospitals as well as a key cohort of longstanding critical collaborators.”
In 2020, Tompkin’s group was responsible for many of the CDMRP applications.
The Feds Don’t
Lots of grant applications did not equal increased funding.
Then a stiff dose of reality hit. Tompkins reported that many of the applications received high scores, but of the 25 or so grant applications to the CDMRP, only 2 small grants were funded. (It was inaccurately reported that many of the CDMRP applications weren’t compliant – they were all compliant – but over a third of the applications were not passed on for a final review.)
For all the work that was put into the grants, the results were disappointing.
Over at the NIH, a good number of grant applications involved “continuing grants”; i.e. applications which fulfilled years two, three or four of a multi-year grant. Still, overall the numbers were considerably up.
The 18 grant applications to the NIH resulted in four new grants for ME/CFS; two small R21 grants and two large RO1 grants. It was certainly very good to see Lenny Jason get a big grant to study his infectious mononucleosis and long-COVID cohort, but overall, the pickings were slim.
Despite all the grant applications ME/CFS researchers had pumped in, we actually started 2021 off in worse shape at the feds. The NIH predicted it would spend $1 million less on ME/CFS this year.
Federal officials have told the ME/CFS community for decades that it must pull itself up by its bootstraps; that if it provides good grant applications, they will get funded. Last year, the ME/CFS field – largely led by Open Medicine Foundation-associated researchers – did pull itself up by its bootstraps – and that burst in grant applications was not the result of federal support. It was homegrown.
When ME/CFS researchers finally showed up, though, their applications were largely rejected. That was doubly disappointing given the field has also recently leapt over another hurdle – the lack of really top-flight researchers.
Most of the CDMRP applications came from two of the top medical schools in the country (Harvard and Stanford). These schools attract the best and the brightest, and have support systems to ensure grant applications are well done. The leaders of the two ME/CFS research centers in the States, Ron Davis at Stanford and Ron Tompkins at Harvard, have over their careers received very large and longstanding NIH grants. If anyone knows how to fashion a grant, they do.
They aren’t the first prominent researchers to buck up against a culture inimical to ME/CFS. About 20 years ago, another stellar researcher, Ron Glaser, was attracted to the ME/CFS field. Glaser had published more than 300 papers in his career, he’d founded the Psychoneuroimmunology Research Society, and the Institute for Behavioral Medicine Research (IBMR). About the time Glaser was beginning to study ME/CFS, he was recognized as one of the “World’s Most Cited Authors.”
Glaser, clearly a very busy man, was very interested in the intersection between Epstein-Barr virus and ME/CFS and was eager to study it. Glaser even went so far as to serve on the federal advisory committee on ME/CFS (CFSAC), yet ended up walking away from the field in disgust when he couldn’t get his grant applications funded. Glaser – whose Institute received over $130 million in research grants – was practically apoplectic over the situation. It wasn’t just anger. He was stunned – he couldn’t believe his applications were being treated this way.
The Alzheimer’s “Cabal”
Chronic fatigue syndrome (ME/CFS) isn’t, of course, the only field to encounter prejudice. Two years ago, the late Sharon Begley, in “The maddening saga of how an Alzheimer’s ‘cabal’ thwarted progress toward a cure for decades“, reported how an Alzheimer’s “cabal” at the NIH held back good research there and elsewhere.
It wasn’t a cabal per se. It was more an inherent bias that pervaded Alzheimer’s research.
In over a dozen interviews, Begley learned about “frustrating, even career-ending, obstacles” facing researchers who didn’t buy into the now mostly rejected amyloid hypothesis for Alzheimer’s. Funding was hard to get, getting published in prominent journals was impossible, speaking slots at conferences were denied, getting tenure became problematic.
One researcher who’d contributed an important early finding regarding amyloids but who eventually soured on the hypothesis, finally left the field, stating that she was “sick about the millions of people who have needlessly died from the disease.” Another NIH researcher believed that the amyloid hypothesis devolved into an “almost religious belief system, where people stopped being skeptical or even questioning.”
Ultimately, that belief system resulted in “a stifling of good ideas”, two decades of mostly fruitless research, hundreds of failed clinical trials, and literally billions of dollars apparently going down the wrong rabbit hole. While research on the role amyloids play in Alzheimer’s continues, at least right now, the amyloid hypothesis looks to be probably the greatest failure of modern medical research. No other field has gone so wrong for so long.
With big pharma giving up on amyloid reducing drugs altogether, funding is finally going to different approaches.
We all love a good conspiracy, but, in truth, there was no conspiracy – no “cabal” (e.g. a secret clique or faction) behind the Alzheimer’s mess. The leaders of the amyloid movement were simply ascendant, and believed that amyloids were the key to Alzheimer’s. They, then, used their influence to thwart anyone who didn’t believe the same.
Hitting the ME/CFS Wall
It appears that Tompkins, Davis, and Glaser are in a similar situation. Getting good funding for ME/CFS, it turns out, is like peeling an onion. The first layer that needed to get peeled off was getting researchers interested. That has happened. Linda Tannenbaum, the founder of the Open Medicine Foundation, told me we finally have the researchers’ ears – we have much more interest than funds.
Getting thwarted at the institutional level, of course, has real consequences. Ron Tompkins, for instance, has been very effective at enrolling researchers to study ME/CFS. If those researchers conclude that they can’t make it with ME/CFS, they will go elsewhere. Plus, and perhaps even worse, the word will inevitably spread at Harvard not to take your chance on ME/CFS. The program will become tainted by that, and the opening Tompkins has created will close.
A Bold Request!
That not a great scenario but it’s vital to get that a real opportunity is present. We have the researchers, and Tompkins is “very excited” at the data coming in. We are on the cusp of something that we’ve been working toward for years.
But how to make the jump into the big time? How to take advantage of this opening?
Big donors have major impacts on many diseases. Why not ME/CFS?
There is one quick way … big donors. Big donors can and do make major and immediate impacts on diseases all the time. Very large amounts of money are going to medical research all the time – and with the stock market gains of the past year, a lot of money is out there. Check out some of big donations that came about recently.
- Sanford Health in North Dakota received a $300 million dollar donation.
- The Broad Institute at MIT and Harvard also received a $300 millon donation.
- The City of Hope recently received a $100 million donation.
- The Association for Frontotemporal Degeneration received a $20 million grant to fight dementia.
- Cornell University received $30 million for a new medical building.
- Stanford received $80 million to advance maternal fetal medicine.
- UCLA received a $29 million donation to advance the study of genetics in Parkinson’s and Alzheimer’s disease.
- The Cleveland Clinic received a $15.5 million dollar donation to fight epilepsy in January.
- Check this out – The Mark Twain Medical Center in little San Andreas, California (pop. 2,783!) received a $4.5 million donation.
My request is that someone step forward and blow this field wide open. We have the talent, we have the interest and this field is ready to rock and roll. Getting ME/CFS researchers embedded now in long COVID and ME/CFS research now will pay huge dividends for them and us as the long-COVID research proceeds.
Stepping forward right now could make a profound difference, not just in the million people with this disease, but possibly also long COVID, fibromyalgia, POTS, chronic Lyme disease, etc.
A pretty nice legacy…
#Millions Missing
Millions Missing – spreading awareness across the globe.
What can the rest of us do? Continue contributing to our research foundations and participate in the biggest awareness event of the year – #MEAction’s #MillionsMissing week from May 9th-15th.
When I complained to the NIH about their failure to support CFS research a number of years ago they had the audacity to tell me that they were not receiving enough grant requests for CFS and that’s why there was so little research. This is clearly NOT the case at all and it illustrates the NIH’s unwillingness to support proper CFS research.
It’s actually true that they were hardly receiving any grant applications. Prior to this year the number of grant applications sunk to their lowest levels probably in decades.
That changed somewhat in 2020. (I’m not sure how many of the 18 applications were new ones last year and at least the NIH funded 4 new ones). I don’t mean to let the NIH off the hook for their decades of neglect – they could have done something to increase grant applications long ago – but the really big disappointment was the CDMRP which ME/CFS researchers came out in force for – spent a lot of time and energy writing grant applications – and were basically skunked (2/25 or so).
Cort,
When I contacted them they were getting and denying almost every request for CFS research. It’s just disgraceful.
Great post, Cort. The Alzheimer story is a perfect parallel example of what has happened with ME. Yes, it’s a complex disease but its being thwarted for decades at the institutional level.
Thank you
Thanks Mary.
I think the opportunity is so ripe right now. We have the researchers! And not just any researchers – Harvard and Stanford researchers. That’s great news. That’s a big step forward – now lets put them to work!
I had a look at the NIH website, focusing on NIH Leadership and I found this piece:
‘The NIH Director, with a unique and critical perspective on the entire agency, is responsible for providing leadership to the Institutes and for constantly identlfying needs and opportunities, especially for efforts that involve multiple Institutes.’
And then you wrote Cort that ‘The NIH predicted it would spend $1 million less on ME/CFS this year.’
Given your previous blog on the pitiful funding for ME/CFS in relation to disease burden, this just doesn’t add up. The NIH minds its billions of dollars, whilst the cash strapped, vulnerable, exhausted, sick people and their worn out families are funding crucial research.
“Ultimately, that belief system resulted in “a stifling of good ideas”, two decades of mostly fruitless research, hundreds of failed clinical trials, and literally billions of dollars apparently going down the wrong rabbit hole.”
WOW! I had no idea it was THAT bad. A crippling disease with a clear diagnosis that affects so many of us, up to the point that near anybody will know someone in his near circle having it, has been taking hostage for decades and billions of dollars? “Just” by denying funding, publication of research, denying tenure and ending carreers if one had but an alternative equally scientific approach? Man, that is BAD, real BAD!
I thought we had an uphill battle, but now I’m baffled. Reading it, if funding from Big Pharma hadn’t dried up this idiocy probably would still have held. They probably couldn’t maintain the expenses to keep funding their false believes without that money and crumbled financially from within.
And all that seemingly because a SINGLE approach towards this disease was believed to be the only way to tackle this disease. I hate to tell, but just believing that ME/FM/POTS/… is for real and patients describe their symptoms and experiences accurate all while there being so few text book standard markers supporting their claims probably casts doubts over entire chapters in dozens of basic medical education books :-(.
I wasn’t fully aware of the issues with research into Alzheimer’s disease, Dejurgen, however the situation doesn’t surprise me that much. For years I worked in residential social work and more recently in the counselling/psychotherapy sphere, both of which were riddled by hierarchical dominence. You toe the line, or you don’t get on, simple as that – even if individuals are being harmed. There was an element of ‘doublethink’ – you have to know and not know simultaneously – many psychotherapists are more than capable of this feat. And I often think you get to know people really well when you challenge them. I just ended up in a load of trouble and as you can imagine, I didn’t get on!
What I wonder, when I read this is do the NIH etc., think there is a bottomless pit of humans to care for the young, old and chronically unwell, whilst also fuelling the economy and running the businesses, hospitals, schools and agriculture and so on?
Yes, even Big Pharma- Begley states that amyloid drugs got funding because the top scientists that Pharma relied upon continued to push it. That made it a safe choice for pharma. Even if the drug failed the executives could also point to the researchers advising them. She suggests it would have been riskier for executives to fund drug trials which didn’t line up behind the prevailing beliefs.
This inspiring story from the NY Times demonstrates a) how important perseverance is in research and how research that turns out to be incredibly important can be sidelined by the prevailing wisdom. In this case it involves a sidelined female immigrant researcher and the breakthroughs that made the mRNA coronavirus vaccines possible
https://www.nytimes.com/2021/04/08/health/coronavirus-mrna-kariko.html
Precisely. So the brilliant Dr Kariko’s research was precariously funded, whilst the NIH’s piggy bank is choc full of dollars. Not a sustainable way for one of the richest nations in the world, to inform and supply its healthcare system with treatments and subsequently care for its citizens.
Instead, the tenacity and singlemindedness of Dr Kariko (against the odds) has now helped millions.
Such an inspiring story – which could easily not have happened!
Of course if the NIH had ever responded fittingly to THE post-infectious disorder – ME/CFS – the long haulers wouldn’t be in the mess they are in…
Such an inspiring story – which could easily not have happened!
Of course if the NIH had ever responded fittingly to THE post-infectious disorder – ME/CFS – the long haulers wouldn’t be in the mess they are in…
Cort, just as ccs me patients are hopeful for treatments, so also are those who have not yet come down with covid disease.
Because Long-hauler Disease/ syndrome/ is one sequelae from a positive covid test, as is life threatening issues and death a possible sequelae.
Cory, could you do a blog listing what. potential treatments are for covid disease?
So much focus is on vaccines, but what about those who are just contracting. Covid now? That may become the ccs me patients of tomorrow?
If there are treatments, what might they be??
Just started watching a seminal video where a doc who is beyond well experienced—made a presentation in Texas.
Even by the first few minutes I could see that this was a game changer if not life changer. :
https://www.todayville.com/theres-another-way-to-end-the-pandemic-doctors-can-knock-covid-out-with-treatment/
auto correct ….. cfs me patients……..
Cort, sorry for typo auto correct,
more covid info:
https://lymediseaseassociation.org/covid-19-and-lyme/peter-a-mccullough-md-mph-covid-19-treatment-protocols/
I see one major difference with the notion of there being a “cabal” affecting funding for ME/CFS research as it may have done for Alzheimer’s related-research. In the Alzheimer’s example, the existence of the cabal is tied to what-was-then a strong scientific hypothesis — related to amyloids — flawed as it was. Is there a similar hypothesis for ME/CFS and now Long Covid (which has brought me to this discussion)? In other words, are NIH’s relatively low funding levels the result of a cabal wedded to a particular hypothesis that blocks out other approaches? Or, is there too much uncertainty in the underlying science, which in itself can generate hesitancy in the halls of funding organizations? The end result may be similar (insufficient research support), but the causes — and any potential directions for research — are likely very different.
Definitely a different kind of “cabal”. In one case the rejection of a hypothesis; in other the rejection/diminishment of a field itself. In the highly competitive grant universe even a small diminishment of a field – a tendency to mark scores down a bit more , or a reluctance to pass papers onto the next levels – might suffice. The common factor in both cases might be those on the inside conferring unworthiness on a hypothesis or field; i.e. there are more important things to study – so why should I fund this one? That’s one reason why it’s so important to get the functional cost ME/CFS confers on those who have it.
Understood. I also am wondering how the $1.15 for Long Covid/PASC research relates to this. I have to think that shifts the dynamic significantly. Is money the problem at this moment? Or, should the priority be ensuring those funds are deployed effectively?
I think both.
The money for long COVID will help enormously and we still need a big ME/CFS research team to be able to apply whatever findings come out of the research. Right now our ability to jump on a finding, validate and ultimately enrich it is pretty darn poor. I imagine it may take us a decade or more to do what another better funded field could do in a year. We need a really robust research presence to take advantage of the long COVID findings.
ME/CFS researchers also bring a wealth of knowledge about how exercise, mitochondria, immune functioning, the autonomic nervous system, neuroinflammation relate to ME/CFS that others probably aren’t bringing to the field. We are more likely to bring the right questions to long COVID research than perhaps anyone else. Plus we need to see ME/CFS and long COVID patients in the same study…and I wonder how often that’s going to happen if we don’t up our presence.
I think the long COVID findings will bring real breakthroughs to ME/CFS and we obviously want that to happen as quickly and as definitively as possible. So what a great time to up our game and get into the big time. Hooking ourselves in with long COVID NOW means hooking ourselves into a big money stream for good.
I ask this genuinely: have any of us thought seriously about the possibility of a class action-type suit against the NIH? There is honestly INSANELY large amounts of evidence of willful/knowledgeable neglect on their part, ESPECIALLY over the last decade or so. Misappropriation of funds, public statements promising support while denying every grant application in private… their actions and lack of action has been despite the facts and has left millions of Americans sick, sicker and dying. I just don’t see how that isn’t somehow criminal.
I’ve certainly thought of it. I guess the question is whether the NIH can be held civilly or criminally negligent for not supporting research into a disease that affects so many people. I have no idea.
I do like the publicity that such a lawsuit might shine on the NIH and how they fund diseases…
Not just the NIH – this is a world-wide issue. The U.S., EU, Canada, Australia, New Zealand – and who knows how patients are faring in Asia, Africa and South America? It’s the same story everywhere.
But the UK (Wellesley et al) and the Netherlands seem to be especially deserving of dishonourable mention. The PACE trial and its downstream ‘treatments’ forced on vulnerable patients in order to qualify for (more likely to prevent) disability coverage have been devastating to millions; they almost single-handedly shovelled bucket loads of stigma onto severely ill patients – buried us in it, in fact – and on top of that ensured no-one would touch us or our disease with a ten-foot pole.
I have to believe the astounding non-response to the current crop of research grant proposals lends credibility to the suspicion that we’re all still living under the shadow of the PACE trial and its caustic ‘marketing’.
I don’t think asking if the treatment of our disease might have parallels to Tuskegee is unreasonable, at this point. As I saw someone post recently: “I need a new set of conspiracy theories. My old ones have all come true.” This seems to have gone beyond just ‘saving money’.
Thank God for the patient(s) who fought so valiantly to get the PACE trial data released (I feel horrible that I can’t remember his name – I believe he was Australian?), for science writers like Dr. James Coyne and the many other authors who signed their names to that wonderful letter to the editor, and who went on to contribute to the PACE-Gate journal. Who were brave enough to fight our corner, even though most of them had no horse in the race other than wanting to stop bad science and further harm to patients. (Please forgive the lack of names, titles and specifics; brainfog has set in thick today. Perhaps someone can comment with better references?) And of course, for people like Cort, and Jen, and the many patient groups who try to raise awareness. Who knows where we’d be without them?
I’m wondering what criteria we might need to take this to an international court? At this point, we’re beyond national boundaries and justice systems.
Also, perhaps two class action lawsuits are in order: one by patients whose lives, careers and health have been damaged, and another by the researchers and scientists whose careers have been sidelined, and who paid the price for working in this area.
As for the Alzheimer’s research, words fail me and my heart goes out to everyone impacted by that – patients, family, caregivers and researchers alike – which is a very great number of people indeed.
Thanks for reminding us that this is worldwide. It’s a Western medicine mindset.
I know a lot about lawsuits since our family was the plaintiff in two 2 l/2 month trials against the maker of Bendectin, a morning sickness drug that caused our son’s birth defects. We won the first case, but that verdict was tossed out by the judge on a JNOV, Judgement Not Withstanding Verdict. That means that no matter what the jury decided, the judge has the final say. The judge in our case was brought in specially just for this trial because we were the pilot case on a drug that was sold all over the world. Our second case was a paper trial, meaning that our lawyers had run out money trying the first case against a company with very deep pockets. A paper trial means that the trial testimony from the first trial is read back to a new jury, the kiss of death on a trial with highly technical scientific testimony. We lost that case and the subsequent appeal. By this time, Dow Chemical had purchased the company that made Bendectin. They asked the judge to tax our family with $209,000 in their court costs. This was eventually reduced to around $5,900, still a lot for our family, but the attorneys said “not to worry about it”; they were just trying to intimidate me because I was helping other families with their lawsuits against Bendectin. Cases went on to win millions all over the country culminating in a $95,000,000 verdict in a case in Washington, D.C. The drug company took these cases to higher and higher courts all the way to the supreme court and got them all overturned. In the meantime, our family wanted to refinance our home, but the mortgage company said that we could not because the $5,900 we were told not to worry about had been attached as a lien to our home (without anyone notifying us) and the amount was now $11,000 and growing at 10% compounded annually. We eventually negotiated with Marion-Merrell Dow and paid them $3,000 to take the lien off our home.
The good news is that we got Bendectin off the world-wide market in 1982.
Regarding the suggestion of suing the NIH over failure to fund studies on ME/CFS, this would be very difficult because a lawsuit like this could only be brought under the Federal Tort Claims Act and there is a statute of limitations. What is the Federal Tort Claims Act Statute of Limitations? There is a 2-year statute of limitations to file a tort claim under the FTCA. Generally, the statute of limitations begins 2 years from the date the cause and existence of an injury was known or should have been known.
With PACE recently overturned, does that not leave time? And still more proof when cure/cause fully determined. Which can only then say hurt is fully known
“For years, American intelligence agencies have been warning about the increasing risks of a global pandemic…
The… worldwide threat assessment, put out in January 2019 by the Office of the Director of National Intelligence, contained language on global health that was more pointed than in previous years in calling attention to the risks…
We assess that the United States and the world will remain vulnerable to the next flu pandemic or large-scale outbreak of a contagious disease that could lead to massive rates of death and disability…”
https://www.google.com/amp/s/www.nbcnews.com/news/amp/ncna1144891
The report(s) is a collective view from the US’ 18 (?) intelligence agencies. (Thank you to all who work so hard to help so many. Thank you, HealthRising.)
How does this synch with the recent $1B in long-haul Covid funding? So that I can understand better. You are saying that last year’s grant request for CFS didn’t work out too well, yet there has been an effort approved to put $1B into long-Covid that will hopefully help CFS as well. Does that mean it’s NIH initiated research or that again, our CFS researchers have to apply to get some of that $1B and we haven’t heard yet on whether those funds will help us ultimately?
I am very confident that the long COVID research will help ME/CFS because I think it will dig into the heart of what it means to have a post-infectious illness. I suspect that the results will apply to people who didn’t have a post-infectious onset as well. A) I wonder if some people such as myself who have been characterized as gradual onset had atypical symptoms of infection; I did have an infection but it showed up as fatigue and muscle pains, orthostatic problems etc. but without the sore throat, sneezing, etc. B) I think and hope the research will uncover core issues which cause the symptoms found in both the long haulers and people with ME/CFS – whatever their onset.
I want, though, for those results to be applied to ME/CFS as quickly as possible and for that we need a robust ME/CFS research community applying for and getting grants. With our currently small research community – applying anything to this disease can take a longer than we would want.
If ME/CFS patients are included in long COVID studies that’s a different scenario – and hopefully they will be – and the results from long COVID patients will be quickly applied. I’m sure that some will be included but I imagine that ME/CFS patients will participate in a relatively small portion of studies. I suspect that most will focus purely on long COVID. That means somebody has got to apply them to ME/CFS.
So while I feel really confident that we are on our way the best scenario would be to have a robust ME/CFS research community bringing their knowledge about ME/CFS to long COVID and getting ME/CFS really embedded in the whole long COVID research project. That’s why I think this is a great time to really up our game as the long COVID research blows up.
Quite honestly, I don’t see how we can lose if we do that. We do have a couple of studies going: the Open Medicine Foundation has a great long COVID project going now. and Lenny Jason has a great study… and we could use many more. We have to have them if we are going to cover all the bases. Two studies can’t begin to do that.
I think it is time a new strategy / way of thinking is considered. It seems clear that the current reseachers/academic world has failed for decades in helping real patients either in the diagnostic or treatment realms. Most of us have find our own best solutions through research, trial and error, which often includes protecting ourselves from the medical communities’ recommendations – as they don’t really know enough about the disease. Why would we continue to ask the govt for more money to be given to the same people who have failed to solve this problem for decades? Would it make sense to pitch to private industry that this is a worthwhile disease to take a look at as the financial rewards could be great – especially if they include COVID 19 long haulers in the mix as the two seem so similar. Perhaps the govt can incent/reward based on real RESULTS achieved, not just the hope and promise of results.
That makes total sense and lets hope that big pharma is eyeing the long haulers now and digging into them. Usually breakthroughs come though, as a result of federally funded and pharmaceutical funded research and studies. Plus the long COVID funding is going to bring in many, many new faces….people we’ve never heard of. It’s going to be exciting.
My one niggling worry is if these new researchers know enough about ME/CFS to apply the findings from it to long COVID. That’s another reason we need the Ron Davis’s, the Ron Tompkin’s, the Ian Lipkin’s, etc. involved.
Thanks, Cort. Agreed, the thought of new minds with a fresh perspective is exciting. Hopefully they could reference the research already done (as much as is documented). My own opinion is that any hope for cures must focus on the root causes, and treatments for the root causes, moreso than manifestations and impacts and treatments geared to addressing those. In that vein of thinking, I think it would be important to reconsider e.g. the work of Judy Mikovits and the xmrv virus. Anyone who has seen the medical research world and govt involvement up close knows it is a very political, competitive and even at times nefarious world and the best people can sometimes be given the worst treatment/ consideration, and vice versa. Also, when the money has to be earned, rather than handed out, I think that would improve the chances of some real breakthroughs. In closing – thank you for this wonderful site and resource which is helpful to us all!
Can’t resist adding a simple example – assume Judy Mikovits is onto something with the xmrv virus and family of viruses. If so, develop a drug that can knock it and Covid type viruses out! That would nip the development of secondary issues in the bud for new cases, before they develop. Then focus on clean up of the secondary afflictions that may remain for longstanding patients. I believe Dr. Cheney noted that bison heart extract can do a lot to repair a damaged heart, and Andy Cutler has shown that detoxifying from heavy metals gives the bad bugs less places to hide, once they’ve gotten you. Long term, pie in the sky goal… Push to stop cross species contamination when using animals to develop vaccines and stop developing super viruses in labs! (root causes). That is a genie that probably can never be put back in the bottle, but we have to try to recognize and strategize a way to deal with it.
If she was that would be great – develop an antiretroviral drug – and knock that sucker out. Unfortunately the virus was never found in uncontaminated blood samples. The NIH went to a great deal of trouble, brought in top experts, and spent a lot of money searching for XMRV. It would have been great to find it. Would have made things so much easier and those virus experts surely wanted to find it. It would have funded their work for years. Alas it was not so.
Regarding the rejection or down-grading of applications, as a scientist I know from experience that science is so specialized now that you can’t rely on random people from other fields to properly evaluate your work.
Their own unfamiliarity with the field will cause them to be more conservative in their evaluations, even if they like your work, and it may cause huge problems if the scientific norms of their field conflict with the norms in your field.
In other words, we need ME/CFS people on the inside, reviewing grant applications. At the very least, we need more exposure for the scientific results that we do have. In that regard, the long Covid stuff might actually be helpful.
I’ve been struggling to come up with the best approach to asking my senators and congressman for help with research funding. It’s more of an allocation issue with rejected grants as the funding is there. I will ask my representatives to get involved by looking into the grant approval process and why the best researchers and facilities are being denied. This is very interesting and insightful.
This is an ECONOMIC WAR! I coined this term in one of my two in-person Testimonies to the HHS – CFSCC back in October 2000… Here’s one discourse thereof… https://www.scottishlegal.com/article/orthodoxy-on-trial-iii-did-flawed-science-beget-flawed-law?fbclid=IwAR3PKZqH50iIjfCZQJ1X8mQZ3wr7Gs5HLvtV4fqsnh17nE3cV1QQjVCPpmg
Hi Suellen
How are you feeling now?
Are you better?