No reliable diagnostic criteria, no validated treatments, controversial, lots of people affected … paltry funding. It sounds like chronic fatigue syndrome (ME/CFS) but it’s actually post-treatment or chronic Lyme disease. The numbers are similar (about 1,000,000 people in the U.S.), the suffering is similar, even the funding has been similar.
Two diseases with similar histories, one of which recently experienced a huge increase in funding.
Despite the National Institute of Allergy and Infectious Diseases (NIAID) touting its “long-standing commitment to conduct research on Lyme borreliosis, or Lyme disease” dating back 35 years (which, come to think of it, brings us to 1985 – about when ME/CFS went public), from 2015-2019 the NIH spent about $25 million a year on Lyme disease. (Proving they can tout anything …)
As with ME/CFS, the NIH lists many impressive goals regarding Lyme disease (understanding microbial physiology, molecular, genetic, and cellular mechanisms of pathogenesis, etc.), and evinces such commitment and concern … and yet has produced so little work. The only major breakthrough NIAID touts on its Lyme webpage is the identification of the microbe – back in 1981.
Big Boost
Things have been changing, though. In 2016, the NIH funded the Novel Approaches to Understanding, Preventing and Treating Lyme Disease and Tick-borne Coinfections (R01) (nih.gov) grant opportunity and another smaller grant. Those grants didn’t go nearly far enough, but they did boost NIH funding by about 20%. (A similar grant opportunity more than doubled ME/CFS funding from 2015 to 2017).
Then something astonishing happened. After getting boosted by about 20%, Lyme disease funding jumped from $34 million in 2020 to $53 million on 2021 – a 64% increase in one year.
Congress Happens
If you think the NIH finally got it big time about the seriousness of Lyme disease, think again. As Emily Taylor of Solve M.E. has noted, many NIH initiatives have begun in Congress – the only outside agency that has the ability to make the NIH move. It was Congressional action that prompted the big uptick in NIH funding.
The December, 2016 21st Century Cures Act required the Department of Health and Human Services (which the NIH is a part of) to create the Tick-borne Disease Working Group and produce a strategic plan.
A step-by-step process brought Lyme to where it is today. The earliest steps did not call for more funding.
Note that the bill didn’t even mention extra funding. Getting more Lyme funding has been a step-by-step process – the early steps of which did not include asking for more funding.
Even then, Lyme organizations reported that it took “two days of intense negotiations with Congressional offices” to get their language inserted into the bill. The seemingly small steps found in the 21st Century Cures Act, in retrospect, turned out to be large, though.
Report – Every two years, the Working Group provides a Report to Congress (hhs.gov) so that Congress can precisely track the NIH’s actions on Lyme Disease. (The 2020 Report ran to 180 pages.)
Strategic Plan – In late 2019, the NIH issued its NIH Strategic Plan for Tickborne Disease Research. Part of the process of producing the strategic document involved asking for stakeholder input, which included patients and advocacy groups, as well as researchers and doctors. Ninety-two people provided input.
It was a small document – just 26 pages – but it was NIH-produced (i.e. it had internal validity) – and it laid out five strategic priorities and numerous sub-objectives in precise detail. It was a true strategic plan.
Funding for Lyme disease remained stagnant in 2020, but in 2021, the National Institute of Allergy and Infectious Diseases requested a 64% increase in funding for Lyme disease ($54 million/year). Then Congress (the 180-page report from the Tick Borne Disease Working Group in hand) mandated that an extra $10 million be added on top of that.
Suddenly, Lyme disease funding at the NIH was up to $64 million dollar a year – about double what it had been a few years earlier.
Congressional Bill – Meanwhile, the 2019 Kay-Hagan Tick Act (named after a Senator who died of another tick-borne illness) provided an extra $21 million for the CDC’s efforts on on Lyme disease which included increased surveillance of tickborne diseases. The backers actually didn’t get nearly the money they wanted – but they got their end goal – a line-item in the budget which could be negotiated up the next year.
Congressionally Directed Medical Research Programs at the Dept. of Defense (CDMRP) – Lyme disease had already gotten pretty well ensconced within the CDMRP, where it was receiving about $7 million in funding a year.
With funding for the Tick Borne Research Group remaining stable, the federal government is due to spend $91 million on tickborne research next year – that’s a 65% increase from the $55 million the year before and three times what it had been just a few years earlier. Things are booming in tick research.
Big Donors Show Up – Plus, some big donors have been showing up lately. Late last year, a San Francisco family (four of whom have PTLDS) made a $2.14 million gift to the MIT School of Engineering to fund a two-year Lyme disease research project in an attempt to understand how the Lyme bacteria reprograms human immune systems. That came on the heels of an earlier $5 million dollar grant to Harvard. That’s $7 million in one year from one family – about half of what the NIH is spending yearly on ME/CFS.
Well, good for people with Lyme disease, you might say. But what does that have to do with ME/CFS? Potentially plenty.
Chronic Fatigue Syndrome (ME/CFS)
While Lyme disease funding at the federal level suddenly and dramatically boomed, ME/CFS funding has, if anything, been trending down a bit. Don’t let that fool you It’s possible that we’re at the early stages of the same trajectory. Over the past couple years, we’ve been treading a similar path to what Lyme disease used to dramatically increase its funding.
The NANDSC ME/CFS Working Group – From 2018 to 2019, an NIH-sponsored ME/CFS Working Group produced a document of its own. Instead of Congress, it was Walter Koroshetz, the head of the National Institute of Neurological Diseases (NINDS), who took it upon himself to create an internal working group called the NANDSC Working Group for ME/CFS Research to “provide scientific guidance on how best to advance research in ME/CFS at NIH.”
Note that in contrast to the 92 people who provided comments to the Lyme Working Group, 281 provided comments to the ME/CFS working group. NIH officials were reportedly very pleased with that result which showed strong community support.
The ME/CFS report received much more community engagement than the Lyme report did.
The group’s report did not directly call for more funding. Its top recommendation, though, was to ask the NIH to prepare “an overarching research strategy to address the complex nature of ME/CFS” – the same kind of document which appears to have propelled NIAID’s request for substantially more Lyme funding.
The Report also put the NIH on notice that NINDS agreed that:
- A lack of knowledge exists regarding the underlying biological mechanisms of ME/CFS
- Insufficient information exists about clinical aspects of the disease
- That the numbers of investigators and grant applications are too low
- That this disease needs many more “early career” investigators
- That the stigma that is still hampering ME/CFS at the NIH needs to be addressed
- That the field is lacking and that a strategic research approach to ME/CFS at the NIH (and elsewhere) is needed.
While the NANDSC report probably doesn’t have the cachet of an Congressionally mandated report, it was an internal document developed by NINDS and passed by its “grand council” (NANDSC), and therefore potentially has real clout.
So far as I can tell, the NIH moves in response to only two things: Congressional action and internal reports.
ME/CFS Strategic Document – The ME/CFS strategic document would likely have been done by now, but it was delayed by the pandemic. The document will presumably distinguish precise research pathways to follow, potentially laying the groundwork for more funding.
NINDS (and each of the other Institutes) have an Office (“The NINDS Office of Science Policy & Planning”) that’s devoted entirely to science policy and planning and developing strategic plans. Vickie Whittmore reported that the passage of the NANCSC reported provided the ME/CFS supporters at the NIH with resources they’d never had access to before.
Note that we already have a Working Group in the NIH – the Trans-NIH ME/CFS Working Group. It may not have the clout of the Tick-Borne Disease Working Group, but it is a stable group whose clout could rise over time.
The NIH ME/CFS Congressional Report – The Tick-Borne Disease Working Group provides a report to Congress every two years. After the last report, Congress bumped up funding for Lyme an extra $10 million, on top of a considerable increase in funding from the NIH.
When the attempt to increase CDC funding for ME/CFS failed, language was inserted into the funding bill requiring the NIH to provide a report to Congress on the ways it was increasing research on ME/CFS. When the pandemic struck, the report was put on the back burner – but it will come due.
The fact that Congress asked for the report indicates it’s concerned about the NIH’s support for ME/CFS. That report will give our Congressional supporters a foundation to ask for more funding.
ME/CFS – Increased CDC Funding – Lyme advocates were able to get a bill passed to get a line-item for CDC funding. ME/CFS already has a line-item in the budget for CDC funding. Emily Taylor of Solve M.E. reported that ME/CFS advocates had increased funding for CDC surveillance wrapped up in a box, with a bow tie on it, until the federal government used the projected funding for the Wall. That suggests that that extra funding is still in play.
CDMRP – Lyme disease benefits from about $7 million in CDMRP funding every year. The Solve ME/CFS Initiative worked to get us into the CDMRP program last year. While the actual grant rewards for ME/CFS were relatively small this year, the program shows real promise.
ME/CFS Congressional Bill – H.R. 7057 – Lyme’s big jump was, in part, triggered by its insertion into the 21st Century Cures Act in late 2016. Our attempt to give Congress say over NIH funding with H.R. 7057 ultimately failed, but it did garner over 50 House co-sponsors and was defeated, in part, because COVID became such a political football. Our support on the Hill has clearly grown substantially.
Big Donors – One thing we don’t seem to have are big donors. We could use some really big donors. Linda Tannenbaum of the Open Medicine Foundation told me the problem used to be getting researchers interested in ME/CFS, but that’s really not a problem anymore – many researchers are interested in ME/CFS now – they just need the funding.
ME/CFS’s Great Win – the Long COVID Funding Bill – ME/CFS’s great win was to play a “critical role” in educating Congress about long COVID and ME/CFS. That directly translated into $100 million in funding for long-COVID diagnostics, and helped bring in over a billon dollars in funding for long-COVID research at the NIH.
Two Diseases – Two Parallel Paths (and Futures?)
ME/CFS is treading a path similar to the one Lyme took to dramatically raise its funding.
With their attempts to pass Congressional bills, produce strategic reports, utilize Working Groups, and use line-items to increase CDC funding, Lyme disease and ME/CFS have been treading down similar paths. With nearly $100 million in federal funding, Lyme funding is looking really strong right now. With extraordinary funding for long COVID coming due shortly, both post-infectious diseases (as well as fibromyalgia) should dramatically benefit.
Even absent the long-COVID funding, the Solve ME/CFS Initiative’s work in the federal legislative arena appears to be putting this disease on a similar path as Lyme Disease.
That future is brighter now than ever before, but it didn’t just land on us. Remember 2016 – the year we didn’t get embedded in the 21st Century Cures Act like Lyme Disease did. If we had, we might have had a Congressionally Mandated Working Group, a Strategic Plan, and a big uptick in funding by now.
We tried to get into the Act, but we didn’t make it; we weren’t there yet. Four years of consistent work – building political support, finding allies, and developing coalitions – has left us in a different place now. We have a seat at more tables now. That’s why hundreds of ME/CFS advocates were able to pave the way during Lobby Day, and in the battle for H.R. 7057, for the humongous long-COVID funding bill.
The question is, what’s next?
The next step on road is clear – the Solve ME/CFS Initiative’s Lobby Day will help further our progress. With two new disease organizations (the Long COVID Alliance and the EveryLife Foundation for Rare Diseases) joining the effort, the opportunity is there to take Lobby Day to an entirely new level.
Long COVID and Rare Diseases groups join Solve M.E. for Lobby Day
“It was Congressional action that prompted the big up*tick* in NIH funding.”
You’re good, Cort. You’re good.
“Funding for Lyme disease remained stagnant in 2020, but in 2021, the National Institute of Allergy and Infectious Diseases requested a 64% increase in funding for Lyme disease ($54 million/year).”
That’s how I always thought it worked… that scientists at the NIH have a deep understanding of the prevalence and impact of a disease on a patient population and they say “yo Congress, this is devastating and widespread and we need more money if we’re going to understand and diagnose and treat it.” It’s as confusing to me as ever why it’s on Congress to tell the NIH what diseases to study.
Do you think the NIH requested money in this case because the ball was already set in motion with the strategic plan and they needed more $ to see their commitments through?
So far as I can tell the NIH operates on a laissez-faire basis; that is – the more grant applications that come in for a disease the more they will fund that disease. But what happens if a million people are sick and researchers aren’t interested pinning a career on that disease? It doesn’t get funded.
Basically the NIH rewards well established diseases with big labs and prestigious researchers; i.e. the kinds of diseases which present excellent glide paths for younger researchers.
Less prestigious diseases like ME/CFS, FM and Lyme disease lose out – whether they cause a lot of distress or not. There is NOTHING in the grant application process where the NIH assesses disease needs. It’s completely agnostic to whether people are suffering or not.
I imagine that NIAID both saw the writing on the wall regarding Lyme disease and tickborne illnesses and Congress. Congress, after all, is getting nice meaty reports on what the NIH is and doesn’t doing on Lyme and tickborne illnesses. Lyme now has real champions in Congress and Congress, most importantly, controls the NIH’s purse strings. I imagine that Lyme disease proponents within the NIH seized the day when the strategic plan was produced.
Thanks so much for sharing these thoughts.
Cort, do you have any insight into how/why “… most of the 20-plus ME/CFS grants were rejected because they were produced incorrectly….” It is hard to imagine so many grant writers being so far off base. What happened?
I have been told that that figure is incorrect – that many more ME/CFS grant applications did make it through to the final stage. Since I’ve gotten conflicting messages that number cannot be counted on.
I see at least three factors contributing:
* lack of previous research experience in this field
* lack of scale of the research group
* lack of alternative funding for the research
* For new researchers, or researchers new to this field, it helps *a whole lot* to have someone at the very least standing next to you when applying for a research grant. Compare it with writing a detailed plan and budget for constructing a 100 room hotel if you never constructed anything before. An experienced project developper will see near immediately you are unexperienced and part of the plan and budget are not realistic nor credible.
* With a larger scale research group, more experienced members can either write the research proposal or at the very least use their past experience to see where there are good opportunities to be found, what methodologies work best to reach their goals and how much time, equipement and budget is needed for each stage of the research.
Often, they will have had to solve unexpected challenges in previous projects, unexpected challenges that were not budgetted for in time, equipment nor cost. Yet, they had to find at least a partial work around for them anyways. And, as many projects have a fixed set of evaluation goals, using this extra work done in the final defence of the obtained research results sounds more like seeking for excuses as to why some parts of the in the proposal promised research are not obtained rather then as a value adding result defending the research money has been well spent.
As a result, many experienced researchers decide to not state them as results of the previous project, but use this half finished research project as a template to file a whole new research project. Then they have experience, knowledge of challenges and pitfalls, partial results, often some basic equipment to get the job done (reducing cost and time to get that in place, reducing the required project budget making it easier to approve)…
* Extra alternative funding makes it a lot easier to have previous experience, equipment (often making up a fairly big part of the budget for a new group but far less for a well equiped experienced group; projects with for profit compannies are often stuffed with buying new and shinny equipment) and… use partial results from previous projects in new projects.
How? If you had to develop a new way to for example measure the size of cells in a project but that was not a goal by itself, you can skip writing journal papers about that but likely the research funder will see you had to do so based on your grand application, budget and plan to reach the goal. So, forget about asking the same funder for a budget to develop such method, even if you want to improve upon it. He has a good idea from where you start and will up his expectations. If you have enough different research funding resources, you’ll get such grant application much easier passed. I know, it’s a grey area to recycle partial research results as it is sort of stealing from another project. But at the other hand, if you have to write 4 research proposals to get 1 granted that is even more stealing time from other activities that either steal masses of free time from the researcher himself or leach even more time from other projects. So it’s often both a grey area and a necessity for the research group to survive.
It also makes it easier to file rejected projects again with modifications.
How is that? If you always have to ask money from the same funder, you can’t file a project, get it rejected, modify it, file it again… three times. But if you have many different research funders, you can file a project with funder A, get it rejected and (sometimes, hopefully) get some good comments on what needs improvement, do modest effort to get an even better application, file it with funder B…
That doesn’t necessarily increase average improval rate, but it often decreases the amount of effort needed to be done *per approaved project*. Remember, getting high quality research grants near allways NEED to be done off any budget but they can easily take up a quarter (or even a lot more) of the time researchers have to spent.
That in part also helps explaining why even experienced researchers in small groups have smaller approval rates. They have fewer already payed for equipment in their labs, needing to increase the budget of the grant for the same results. They have fewer opportunity to divide the work according to experience and pay grade. A repetive job that could be done by a cheap assistant has to be done by them. They need to budget for a bigger wage, increasing budget again. In addition, that once more eats into the time they can spent writting research grant proposals, often reducing their quality…
For much of the above, small grants for exploratory research from organisations like the OMF or Simmaron are a necicity to get researchers started. Also, grants based on passed experience and research results (e.g., on reputation and good faith with evaluations of results in order to decide to renew that good faith) reduce the grand proposal overload a lot. The researchers still need to make good plans, but know they wont get it rejected because budget for the year is up or because of a feud with someone of the approval commitee (feuds are quite common among those top researchers).
When looking to ease of funding for chronic Lyme disease versus ME/CFS:
* It’s IMO often easier to convince a road taken will lead to usefull results in Lyme. For example a research proposal that tracks the amount of borrelia in human cells or that tracks the spread of ticks over different States can be seen as key. A research for better antibiotics against borrelia are “but” betting that you can develop them in time and on budget, not both betting you can do that AND that they will target a key part of the chronic disease. It is easier to define clear and promissing goals in Lymne disease versus ME/CFS.
* The above not only increase chances for research and treatement success, but also for commercial succes. A companny selling pesticides can be interested in knowing how much ticks there live in what areas, a companny selling drugs can be interested in producing expensive new drugs or antibiotics against lyme. That helps with important sponsorring from big funders.
Ms. or Mr. dejurgen, you sound quite well informed about the grant application rejection rationales. Are you perhaps a consultant in advisory work in this area? Whether in a consulting capacity or otherwise did NIH or one of its institutes allow you access on some sort of confidential basis to study a sample of grant applications, including both unsuccessful and successful ones?
Information thus gleaned would be of great interest and value to all the researchers in the field.
Thankyou for this very thoroughly researched article. It’s a godsend to have this insight. I’m in the UK but keep close watch on what happens in the US re anything medical. You’re often a good decade ahead of us. I hope that the trajectory you’re predicting pans out – it would be great to have some light at the end of the tunnel. Thanks for everything that you do, it’s appreciated.
Kay Hagan died from complications of the Powassan virus. Powassan virus is not Lyme disease.
Thanks Fact checker – you are a good fact checker! I fixed it. Powassan virus is another tick-borne illness – hence the role Kay Hagan played in the bill.
Will the research be about more easily identified and accepted Lyme disease – tic bite, got a rash, got sickness symptoms, positive test, doctor verified- or will it also look at those with chronic or long Lyme that a certain percent of people wind up with after a known or assumed Lyme infection?
It will look at both…Long Lyme is definitely included in it.
With all the money dedicated to Lyme there has been nothing new in the Lyme world since 2016 with the exception of using disulfiram, off label, on an experimental basis and it doesn’t seem to work long term for many people. Nothing. No accurate tests, no vaccine, no treatments. If you aren’t “cured” by taking Doxy for 30 days right after the bite then most Drs are still clueless. Hopefully with private organizations stepping in to do the research, that the NIH isn’t doing, there will be more help soon. As bad as Covid is at least they are throwing money at the long-hauler issue which will benefit ME/CFS!
No kidding. A field that’s really in a very similar place to ME/CFS. No trusted diagnostic test – and no validated treatments – few doctors that want to treat. A disease that affects a lot of people for which a lot of really basic knowledge is missing.
The research money seems to like diseases with clear causes: Here there is a creepy, disease-bearing arachnid on the one hand, and a rampant new virus on the other. In both cases their causes can be seen under a microscope. The cause for ME/CFS, however, no one has ever found. It appears to have come and gone, and not after just one type of illness, but multiple types and sometimes no identifiable initiating illness at all. After witnessing the repeated failure of research projects focussed on “cause”, I have just wanted the scientists to focus instead on how it works, what it is doing–to start in the “middle”, in other words, and that way find out what it is. Our own experts seemed to have turned to this approach. I only wish that those with money to fund substantial research projects would learn from them.
I have been “waiting” for real progress for 26 years and don’t have much longer before I slide down into oblivion. It seems un-American to bring this up, but some of us will die in this “waiting room” for lack of adequate funding and scientific research.”
Cecelia,
you are needed. Your voice is needed. You are priceless and iteplaceable.
A hope for cfs/ me is that a true breakthrough/cure could mean looking forward to better health with age.
Im 80 years old and like others, Ive been in the “waiting room since 1974, although not diagnosed till 1994. I have no idea how much longer I have, of course, but other than fibromyalgia, Im healthy…… yet nearly bedridden. When? Is there anyone on here that knows of how many more years it will take to rid us all of this so I can begin to hike again.
Very sadly Cecilia, I think you’re right – people already have died and more will die due to the misinformation, from poor quality research, that has been spread around, on ME/CFS for decades. Hopefully now, there is a better path ahead.
I really appreciate your comments, sunie and Tracey Anne! My grandfather was a doctor, medical school professor and one of the early researchers into asthma and allergies, particularly asthma in children. As a teenager he had me typing his book after school. I was fascinated and would ask him a lot of questions at the dinner table. He told me about the great difficulty he had in getting funding and support for his area of research–he told me that the money was available for the things people die of, but not for the things people suffer from. In other words, heart disease, cancer and the like get the money and attention but not the chronic conditions of allergy, arthritis and so on that impair peoples’ lives and cause so much misery.
I am so grateful that we have each other–friends and helpers in the boat–and am deeply grateful for Cort’s heroic efforts, to inform and bring us together, so we can try to understand and further the work.
Cort, how do you see fibromyalgia benefiting? Given the overlap between ME/CFS, Lyme, Fibromyalgia, MCS, wouldn’t we get farther ahead fighting for a package deal from the gov to help all the illnesses rather than each one having to go it alone and it dragging out for years?
I hope and think fibromyalgia will benefit hugely from long COVID research because the symptoms are so similar to it and ME/CFS. It shares too many similarities with ME/CFS for it not too.
Boy if it could be done – all these diseases with similar symptoms – with tens of millions suffering = could make a mighty, mighty case that the NIH is neglecting a huge number of people. Lyme is now doing well but ME/CFS and FM, POTS, interstitial cystitus, migraine, MCS and others are not. That disease Coalition would I imagine really get noticed.
These diseases form a theme – most attack more women, most cause a lot of suffering but do not generally kill, most are difficult to treat and most get little funding.
I really think it could be done as one group if people could just learn to work with each other. There’s so many wanting to splinter things and only focus on one illness they can’t see the harm they are doing to themselves. We need to think big picture and not from the viewpoint of research only for one illness. These patients need research and cures but most of them right now need basic life support and compassionate care to get them through while we wait for the research to figure it out. Maybe I missed it, but I’m not seeing these advocacy people pushing for ME/CFS research pushing for a decent level of income so the patients aren’t living below the poverty line. I know people living on the streets. They need funding now for a home. All the illnesses have many of the identical needs like proper care, food, social supports, a decent home etc. We’re letting a few people decide research is more important than the people living long enough to benefit from it. Cort you’re in touch with these advocates. Are any of them looking at the big picture or doing what is necessary to help people with the basic necessities of life? May12th is coming. I hope you can do a story about CIND and all the illnesses that we need to talk about on the 12th and all month during May. We need to help everyone.
Cort, that is a huge percentage of cfs me grant applications declined.
Its my impression that the 16? out of 20 applications turned down by the CDMRP because:
“they were produced incorrectly,”
would—or should—have received feedback on what was incorrect in how the applications were produced
“incorrectly.” So that the researchers could make the required changes and have these applications still in process…..
…………INSTEAD of being refused funding.
Four applications were assessed. That only two made it does not equal
“the CDMRP is clearly willing to fund ME/CFS grants.”
Did all the researchers who were refused funding
receive the opportunity to receive feedback from the CDMRP, AND ALSO receive the opportunity to make revision in response to the CDMRP’s feedback??
Are the topics of the declined applications available to the cfs-me community?
Has the CDMRP provided any clarification for FUTURE applicants so the same huge percentage of refusal due to
“incorrect production” does NOT happen again?
I’ve been told the number I reported was incorrect and that many more grant applications made it through to the final stage – so that number cannot be counted on and I’ve removed that statement from the blog.
My apology Cort,
i missed your earlier reply with info in it, and the longer discussion on why difficulty for funding approval.
Thank you.
The problem is and always has been, the F word.
I also have been waiting for 41 yrs. with CFS/Fibromyalgia and continuous (dizziness with ringing 100% of the time). Sometimes it goes into vertigo. Plus, the brain fog.
Started at the age of 34 yrs. old & now I am 75 yrs. old. I live with pain everyday from head to toes. Hard to be the out going woman the way, I use to be a bubbly personality when your so fatigue, dizzy, and with super pain & sore throat.
No doctor has ever figured it out. It’s time to have these Scientist & doctors working together to figure out what all these viruses are all about. It’s like having the flu/41 yrs.
It’s brutal Danielle and such a waste of a life. Sending you warm wishes.
Thank you Cord for the well researched article on lyme and its connections to me/cfs.
I would like to point out something which is mostly omitted in the discussions on the research in both these similar diseases. Similar, because both have very strong fatigue as lead symptom, but also because they both are multifactorial. And as we know, lyme is often an important element of me/cfs. I think that research looking for “the cause” of me/cfs will not lead to a solution. Research has already shown that there are different causes. The situation is similar to the search of a solution to Alzheimer’s disease which is not successful, in spite of the many billions of dollars pouring into AD research. Until Alzheimer researcher Dale Bredesen developped an individualized multi-factorial method, which turned out to be successul: Alzheimer can now be stopped and in its early stage, even reversed! Each patient has follow an individual set of 15-20 lifestyle measures. There are functional medicine doctors, who successfully treat me/cfs with an individualized multi-causal therapy. I think it is time for me/cfs research to turn to high precision individualized lifestyle medicine research! This makes necessary a change of the research paradigm of “one treatment against one control” type of research scheme.
Throughout my working life I’ve been interested in power – who has it and what a difference power can make. Funding for something that has previously been repeatedly denied, can suddenly become available.
I remember Emily Taylor saying that in relation to the NIH and Congress that ‘if Congress has already set aside money and has expressed an interest that gives them (NIH) a lot more freedom to invest as well in ME/CFS because they have that political cover – they have support in doing that work.’ Emily was talking on The Solve M.E. H.R. 7057 Legislative Cafe Chat last September 2020.
Personally, I get extremely frustrated by bureaucracy – I’m more of a just get it done kind of a person. However that short term approach is ineffective if not done as part of a longer term strategy, in the correct way, in the correct time frame etc., etc. Pressure/support are crucial in these issues.
Interesting. Thanks for sharing what Emily said. Our funding doubled about 4 or 5 years ago. Yes, it wasn’t a lot of money but when I checked I could find very few instances of a diseases funding doubling. It rarely happens. It’s not as easy as we might think….Koroshetz actually stated that he believed that Collins showed courage in doing that. That statement suggests that we don’t really know how the NIH works.
Throwing money at a problem is not always the answer. In 2020, 606,520 people will die of cancer. Some years ago, our state senator held hearings on how we could spend billons on cancer each year and still not know why it happened and how to treat it. Our senator was being interviewed at a local TV station when a background prop suddenly fell on her injuring her neck and requiring her to retire from politics and give up her inquiry into what was happening with all these billions.
I want answers as much as anyone since I have had ME/CFS since around 1980. I am better than most, but have constant head ringing, MCS, dizziness, PEM, brain fog and leg and back pain. Thankfully, the horrible headaches have gone away. We have spent hundreds of thousands of dollars out-of-pocket looking for a cure or at least an effective treatment. Nothing works for long and I can’t tolerate most supplements.
But I am fortunate also. I run a national nonprofit that works with large groups of people with toxic exposures like Agent Orange, chemical exposures in the Gulf War and contaminated communities. We focus on birth defects, but I can tell you that toxic exposures can also cause illness that is identical to ME/CFS.
For instance in the 1970’s, a flame retardant was accidentally added to the cattle feed that went out all over the state of Michigan. The cows, pigs, chickens became sick with a wasting disease that looked a lot like animal AIDS. When the farm families ate these contaminated animals, they too became ill with something that looked a lot like ME/CFS.
A team of scientists from Mt. Sinai’s Environmental Unit was brought into Michigan (against the will of the politicians). They did comprehensive testing of 1000 members of the farm families and discovered the common factor, the fire retardant had compromised their immune systems.
But, you say, “I got sick after a virus”. Are you sure about that? Toxic chemicals are ubiquitous and you may have been exposed without even knowing it. The early symptoms are some toxic exposures can look like the flu.
The main viruses that have been implicated in ME/CFS are in the herpes family. Once you have these viruses, they live in your body forever. If your immune system is suppressed by AIDS, chemotherapy, immune suppressant drugs, or toxic exposures, these common herpes viruses (as well as mycoplasmas and/or bacteria) can reactivate and kill you or make you chronically ill.
According to studies by the CDC, we all are carrying a body burden of hundreds of toxic chemicals that are stored in our fat. Depending on your genetic ability to break down these chemicals, factors that cause the release of these toxins into the blood stream can be lethal or cause chronic disease.
But, like the old nursery tale, nobody wants to “bell the cat”.
You as a group, however, can make a difference; start comparing notes; asking the right questions; collect data that you analyze. Some scientists do wonderful work in this area, but they are not rewarded. Sometimes, they are even punished with grants denied; tenure delayed, even loss of jobs.
You as a group must demand a focus for research, not a study on this here; a study for that there. With no studies supporting the findings of the others.
You absolutely can make a difference. The organization I founded got a dangerous drug off the market that had been the 11th most prescribed drug at one time.
I understand, you are ill…so am I, but having a common cause can over-ride how bad you are feeling.
I apologize for this long diatribe. If you would like to see the work our organization does and that I am not just ranting with no basis in fact, please visit our web site http://www.birthdefects.org
@Betty
Wise and wonderful comments. As a DES daughter I echo your ideas. I think one issue with ME/CFS is there are just so many factors to consider that for most, the search is too daunting. There are millions of viruses, billions of genes, thousands (or more) of unnatural chemicals–and more– to sort through. Also fatigue is common in so many afflictions and the causes may not all be the same–even in one small area like ME/CFS.
But hope springs eternal and I do hope this common cause will unite us!
To Betty. Your comments are so true, anything that effects your immune system will leave us vulnerable to reactivation of the human herpes viruses which nearly everyone carries today especially In HHV4 (EBV) and HHV6 .As you point out any toxin or medications especially Prednisone also constant stress or tick bite will weaken the immune system allowing reactivation. The polititains have no will to oppose big business poisoning our food chain or stand up to Big Phama weakening our immune system with medications especially Prednisone. We have become collateral damage to Capitalism and therein lies the reason why no known cause has been identified for ME/CFS or Lyme disease which is ME/CFS. I had reactivated EBV after a period of constant stress for which I was prescribed prednisone and then started the beginning of a spiral into CFS. I have very grave fears no amount of funding is going to come up with the answers some people have already been waiting 40 or more years for. I also feel the Covid long haulers who I believe also have reactivated Herpes Virus will also get no answers. There are powerful people in Big business and Big Phama who will use any means necessary to stop people finding out the truth about all these mysterious diseases. They have been successful for a long time. There are some researchers trying help and find answers but there are others trying to confuse the issue deliberately. One has only to remember the smoking issue years ago.
A REALLY GOOD READ. The Atlantic . Unlocking the Mysteries of Long COVID. Story by Meghan O’Rourke. This article was published online on March 8 2021..