The National Institutes of Health – it’s the biggest medical research funder in the world – and it’s not doing nearly what it should be doing for ME/CFS.
The Washington Post is running an excellent story, “Patients push limits for clues to chronic fatigue syndrome“, on ME/CFS and the NIH’s ME/CFS intramural study.
The featured story – of Zach Ault, a father, who while training for a half-marathon, became ill, and now can only work part-time – can only do us good. Zach’s story makes it crystal clear that not only is this disease real, but that it can take you out in a heartbeat.
The fact that it’s showing up in the main D.C. newspaper is an extra bonus.
The story contains some nice, vivid statements that get the point across.
“I’ve tried to exercise my way out of this multiple times and I’ve put myself in deeper pits every time,” Ault
“Chronic fatigue is kind of like they took the stopper out of the energy reserve tank,” Ault
“His body had literally hijacked him and it wasn’t going to allow him to push through,” Anne – Ault’s wife
The journalist gets across how serious ME/CFS is, how little is known about it, and what a struggle it is for people to get help.
“Many go undiagnosed, misdiagnosed or dismissed by skeptical doctors. Decades after it was first recognized, scientists don’t know what causes it. There are no approved treatments, or even tests to help diagnosis — and no way to predict who will recover and who will have a severe case that leaves them debilitated, even bed-bound, for years.”
Dr. Koroshetz steps in to highlight how little is known about the disease.
“The ignorance about the condition just vastly dwarfs what we know about it.” Dr. Walter Koroshetz, Director of NIH’s National Institute for Neurological Disorders and Stroke
The article misses badly, though, when it paints the NIH as a kind of white knight racing to the rescue. It’s true the NIH has significantly upped funding 
but it’s also true that funding is nowhere near where it should be 
.
The NIH has been much more like a turtle than the white knight the article makes it out to be.
Instead of a white knight racing to the rescue, the NIH is more like a turtle that’s been slowly, slowly, trudging towards the finish line – every now and then stopping for a bite to eat, and taking a long nap – as people expire around it.
The false narrative provides an opportunity for education. If we change the narrative from, “Oh what a great job the NIH is doing to help these people”, to how much more the NIH could and should be doing – we can make some progress in D.C.
We can do that by acknowledging that the NIH is doing more (give them credit for that), while swamping the Washington Post’s comment section with requests and demands that the NIH do more – much more.
I put a comment in and then thought of some more ideas that could be used to get across our point.
- ME/CFS is incredibly functionally impairing – Some people might want to reference the study which showed that ME/CFS is more functionally impairing than people with congestive heart failure, type II diabetes mellitus, acute myocardial infarction, multiple sclerosis and depression – https://pubmed.ncbi.nlm.nih.gov/8873490-health-status-in-patients-with-chronic-fatigue-syndrome-and-in-general-population-and-disease-comparison-groups/?from_term=komaroff+chronic+fatigue+syndrome&from_sort=date&from_page=5&from_pos=6
- ME/CFS is more impairing than multiple sclerosis – People with ME/CFS are more impaired and are significantly less likely to be working than people with multiple sclerosis – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6249197/
- It causes huge economic costs – ME/CFS costs the U.S. economy @$20 billion a year – https://pubmed.ncbi.nlm.nih.gov/18397528-the-economic-impact-of-mecfs-individual-and-societal-costs/
- It produces high rates of job loss – Almost 60% of people with ME/CFS become unemployed due to their illness – https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-019-7225-z
- No FDA-approved drugs are available – https://www.fda.gov/media/86879/download
- It results in an increased risk of suicide – https://pubmed.ncbi.nlm.nih.gov/26873808-mortality-of-people-with-chronic-fatigue-syndrome-a-retrospective-cohort-study-in-england-and-wales-from-the-south-london-and-maudsley-nhs-foundation-trust-biomedical-research-centre-slam-brc-clinical-record-interactive-search-cris-register/
- The NIH’s list of funding for diseases and conditions – https://report.nih.gov/categorical_spending.aspx
Does $14 million sound sufficient for that kind of disease? Of course not – yet it’s been four years since Francis Collins promised to “get serious” about this disease.
- Broken Promises – Four years ago, Francis Collins said the NIH was going to get serious about ME/CFS but $14 million dollars a year is not serious. Nor is the NIH’s response to the lowest numbers of research grant applications on record. Nor is the fact that it only has one part-time person (Vicky Whittemore) working on ME/CFS (!) – https://www.healthrising.org/blog/2019/12/20/me-cfs-funding-worsens-as-nih-maintains-status-quo/
We need to keep getting the word out and pushing the NIH for change. (Image by OpenClipart-Vectors from Pixabay )
If you have other ideas how to best get our message across, please provide them in the comments section.
Let’s inform those in the seat of power what’s really going on.
Please check out the article here and comment!
Cort, it appears that you need to sign up to create an account with the Washington Post before you can leave a comment on the article. Am I doing something wrong?
I had no idea! I have an account with them so I can always get through.
I live in england.Ive had me/cfs for 24 years.
I have a host of other serious chronic diseases with it.
The WHO Primer states that this disease is
a neurological and nervous system disease.
Yet ive never had any help or even seen a neurologist, in all those years.
Its all due to the ignorance of drs anď the public who are ignorant of this life sucking disease.
As of writing this im in my bed bedbound.
I get no treatment at all.The only help i have is that of my marvellous husband and carer.
This will never change in my lifetime .
Im 59 next week.Apart from the terrible pain and suffering on a daily basis.
The worst thing is the discrimination from people and drs.
They had me down as mad and mental, till i spent years on research at home( from my bed)
My husband printed out loads of copies,of the primer and i took it to the practice man ager.at my drs office.
I literally had to force all the drs in that practise to sit up and believe.
I also have fibro and 6 other chronic conditions.
Nothing will change in my city Liverpool for many decades.
Ill be well dead by then.
If you have cancer or a disease that’s treatable.You get sympathy and flowers and lots of support.
We get nothing but abuse ans shaming from people and drs
Its the biggest discrimatiom since apthaird
I thought you had to buy a subscription.
Lets set a few days and we will call the NIH AND LEAVE MESSAGES TO FRANCIS. I ALTERNATELY WANT TO BEG, CRY AND EXPLODE. BUT I DO NOT THINK I CAN BE RUDE AS HE WILL JUST DELETE. A BARRAGE OF CALLS SEEMS PLAUSIBLE.
I agree, we should make phone calls to the NIH, send emails (my husband sent one a few weeks ago and got an answer). If we were able to send 500 Xmas cards, we can send 500 emails, can’t we? #meawareness hour in Twitter is also going good. We have to be heard. We have to fight for our health or no one will and we should work together.
As patients, we still face so much apathy and contempt from a large portion of the medical community and wider society due to the stigma attached to the illness. Until people truly believe and widely accept the illness is real and serious I don’t know how much can change for us. A limited number of articles in the media that rely on the wider public being interested enough to read them can only have limited reach but it is better than nothing. I can’t help but feel that we need a serious patron like Harry and Meghan of Sussex Royal who bat for the disenfranchised and who clearly understand the unfairness and powerlessness of being misrepresented. Maybe that’s who we need to write to? Princess Diana single handedly helped to overturn the stigma toward AIDS patients in the 1980s.
Beyond that maybe the NIH and government need to stop and really take stock of the 20 billion hit to the US economy. A 14 million investment to stop a 20 billion leak simply doesn’t make financial sense. This illness is surely treatable and maybe even curable but we can’t find out without investment.
As I stay in my bed day after day…year after year…it’s been thirty three years…I am so disheartened as we all are. I had a thriving business and had to quit. I should have applied for disability but I had no idea what this was or that it would just ruin my existence like it has. One of the worse things is not having people believe you…even people you know. It’s degrading. I don’t try to explain anymore. If only FRANCIS could feel this for five minutes, he would totally write a check. Lets just call him over and over and at this point, BEG. IM NOW AT THE POINT WHERE ILL PROBABLY NEVER GET ANY BENEFITS AS IM OLDER NOW BUT I KEEP HOPING. I LEAVE THE LIGHT ON. IF ONLY FRANCIS WOULD LET IAN LIPKIN GET TO WORK AND RON DAVIS AND KAMAROFF AND KLIMAS, ETC. YOUNGER SEEMS TO GET MONEY. I BELIEVE IN MY HEART THAT THIS WHOLE THING TOOK DR. CHENNEY DOWN. SINCERELY, HIPJAVEN@gmail.com
Many of us with severe ME were business owners when we got sick. Few of us filed for disability because we believed we would figure out what was wrong, get treatment, get better, and return to work. What usually happens is that we search and search for years for a diagnoses (all the while our business loses customers and the money to support itself). When we finally do get a diagnoses (and we have been severely ill for 8 years or more), we are told by SSI and Soc Sec disability that we are not eligible because we haven’t worked and made the minimum income in the allotted time to do so. Somehow, the sickest people in this country who are in the most need for financial assistance and health insurance can’t get it. Even our families can’t understand why we don’t just’ pull ourselves up by the bootstraps’ and get back to work. And all I want to do is brush my teeth (it’s been over a week now). ?
Thanks for highlighting this, Cort. I was completely unaware that the Wash Post article had come out. I have no suggestions to add to yours, though.
What is the most productive way to reach out to NIH? Call or email? Please list contact information.
This is a link to NIH spending on different diseases:
https://report.nih.gov/categorical_spending.aspx
Here is a breakdown that is troubling:
Cases in U.S. NIH spending
ALS 16,000 $87 million
Lupus 1.5 million $128 million
MS 1 million $117 million
CFS up to 2.5 million $15 million
What is wrong with this picture? First, if the government has “no idea” what is causing CFS, how can they predict up to 2.5 million cases (most undiagnosed)? Why isn’t more being spent on a devastating illness that takes people, often young people, down in the prime of life? Why are the meager funds that are being granted spent on proving the reality of the illness and PEM? All funds should be spent looking for the cause, because no effective treatment can be developed without this knowledge.
Amen.
Kate & Bettye~
Amen•Amen•Amen
Find the cause. Viral? In the DNA? The cells? The gut? The brain?
FIND THE CAUSE !!
Betty’s message needs to be repeated everywhere – in media, when writing to government. Amen.
The disparity in the spending is infuriating. How is this justified?
There is no justification for it. It’s just the way the system operates. The NIH to my and probably your utter shock does not assess disease needs and allocate funds for them. It also has no system for identifying underserved diseases and funneling more opportunities to them either.
Instead, the vast majority of the time, the NIH simply funnels money to diseases based on researcher interest. The more researchers that are interested in a disease the more money that disease will get. You can see how over time major diseases with their big labs, more career opportunities, greater cachet, etc. in the research world will come to dominate funding while neglected diseases like ME/CFS struggle to get a foothold.
Behind their guise of being the nations great funder of medical research NIH is simply running a high-level popularity contest.
If I so severelly ill, could do all the tests that the nih does in the intramurall study, I would call myself healthy!!!
ill fo 3 decades, bedridden 99%, just lost the count (most of it) or 100%
NIH gives a shit about the severelly ill ones, even do not excamine them.
In canada at least a researcher has a pretty large group of bedridden/homebound ones and he sends nurses to their homes for research.
also nih or other countrys, do not give a shit for homes with addaptive care like for Ms patients. Urgently needed for many who are alone and verry severe.
to ill to think what to do, but if I can do it, I do it.
Are you living alone without assistance, or are you one of the Canadian patients with home nurse visits? God Bless,
I live alone and can even not cope with help services.
how I live and in the dirt, you can not imagine. but do not tolerate much noise, light, heat, touch, and verry severe sleepdusturbinces, so also not good to go to a home for old people. and I write “go”, it is more like with an ambulance.
1. Why aren’t we suing the NIH and Francis Collins, personally? There is a provision under tort law to sue the federal government and individual govt employees for harm caused by certain forms of negligence. Collins and the NIH meet the criteria.
I recommend a class action suit. I personally will donate my share of any damages to ME research.
2. A lawsuit is further supported by blatant gender discrimination – the disease affects primarily women, making it largely irrelevant to NIH and Collins. I know the demographics are shifting from what was once believed, but the NIH still sees us thru that bias – irrelevant middle aged women suffering from Mass hysteria- and they act accordingly. That is so ugly, on so many levels.
3. Wouldn’t that make the news?
4. Wouldn’t that get the attention of Collins?
5. We’ve been hoping and praying for decades without result. It’s way past time to take real action. Anybody got any ideas for an attorney?
I would donate to, even the fact that I do not live in the us. here , with a few get and cbt appointments, you are cured. here 100 years behind the us.
Are there any prominent attorneys who have family members with CFS?
only idea I have is a petition with some comment how ill we are and send that to the washington post. the facts you mentioned cort, are to complicated to me. tryd to post in washington post but indeed you need an account. otherwise I would have copyd your links and send them with my comments to them.
and for excample that nancy klimas gets money for GWI but not for me/cfs, the small budget for the intramurall studys, how slow it works, the few persons researched, the was it norwegian, swedish stooltransplantation (what does the Us do?, etc etc etc
no transparancy from nih, are they working with other countrys and how much?, etc etc ettc
Senator Ed Markey (Massachusetts) is an advocate for ME/CFS. He is greatly responsible for the passage of a bipartisan bill “Supporting the Goals of International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day.” People in the U.S. should petition their members of Congress to make sure they understand the severity of this debilitating disease affecting millions of their constituents. So next time they see or hear anything about ME/CFS they’re willing to act the n legislation.
He is a great advocate for us!
#MEAction (www.meaction.net) is doing excellent work in MECFS advocacy. This past fall they started a campaign called NotEnough4ME to put pressure on the NIH to act. Look for it, join us. The team is currently planning next steps in the pressure campaign. The more of us (and our healthy allies) speak up, the less they will be able to ignore us. Look for NotEnough4ME on the website, Twitter, Instagram and Facebook.
Thanks
when was this NIH study meant to be completed? and published?
Cort, This is an AP story that has appeared everywhere. The more the better, of course! Thanks for pointing it out here.
I cringe every time I read Koroshetz’s quote, “The ignorance about the condition just vastly dwarfs what we know about it.”
ME/CFS is not a condition. It’s a devastating disease. And yes, it is possible he was referring to the “condition” of “chronic fatigue.” But when the disease is minimized again and again, by inaccurate terms like “fatigue” and “condition” medical professionals have yet another reason to ignore us.
Someday people may come to understand that NIH has a “CFS” public relations program with a bit of research thrown in, instead of a research program with a bit of publicity.
Instead of telling the public how great NIH is, they could use these articles as opportunities to tell doctors, social agencies, and the general public to quit abusing us.
CDC funds all sorts of public information campaigns, but when it comes to ME all of their expertise mysteriously disappears as they claim they don’t know how to get accurate information to doctors.
There is a deliberate policy to allow the perpetuation of confusion and the supposed “mental illness vs. physiologic illness” debate. As long as the confusion continues, disability insurers can continue to deny or limit benefits based on the “mental illness” classification.
The fact that this situation greatly profits insurance companies is purely coincidental, of course. Only a tin-foil-hat-wearer would ever think that the mighty NIH would make policy based on corporate profits.
Although the federal government exempted itself from the Americans With Disabilities Act, they failed to do the same with the Section 504 of the Rehabilitation Act, which states in part:
“No otherwise qualified individual with a disability in the United States … shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance or under any program or activity conducted by any Executive agency…”
This law has been used by parents to force school districts and state agencies to properly fund programs for children with various special needs. It’s past time to see if we can use it to force NIH and CDC to do their jobs.
I totally agree!
Cort, it looks like this was an AP article from around January 8th or so. Is there a time limit to respond to articles and still be published?
Advocates for the terrible disease ALS which affects 16,000 raised $115 million for research with the “ice bucket” challenge. Maybe CFS patients who are too debilitated to leave their homes could start thinking about a fundraising challenge like this that could funnel funds to the most promising researchers.
Cort, how about a contest for the best idea?
Betty – your comment is well-taken – important breakthroughs have occurred in response to grand challenges. I have been thinking about having something equivalent to the March of Dimes (though dimes are not enough).
Have you brainstormed titles and scope?
Here are some of my thoughts
“Shake the Salt”
“Shoes with Wings” “Accelerating Energy”
“AI 4 ME”
“ME Momentum”
“Gaming ME”
“ Digital Envelopes for ME”
We need something catchy with words that are trendy (and long term – last at least a decade) and will be automatically be picked up by search engines for at least a decade – say
Also need a scope statement on what money will be spent on. I am a proponent of precision medicine approaches with patients participating via data collection. I vote for putting measurement equipment and study protocols in the hands of the patients. The data may not be viewed to be as “clean” as that collected via clinical trials (though that can be suspect too)
but it does permit us to contribute on our own initiative.
For example, why not a patient defined LDN study and give patients commercial off the shelf tracking devices.
The biggest obstacle though is having a “legal entity” so probably best to find existing one unless you have energy to lunch a meta-level charity non-profit startup that distributes funds to existing orgs. “Not for Profit” might be a consideration – that is make a profit but funnel it into investment assets that return cash cow $ to the startup without shareholders.
Either way I believe healthy/driven people to serve on board and administer it are a requirement. As patients we may contribute but our performance tends to be in fits and starts.
That’s my brainstorm –
Perhaps asking famous people to spend a week lying in bed.
I live in England and have had ME/CFS for almost 20 years (but, like so many of us, I know that it started in childhood). I would like to know the reasoning behind my doctor’s thinking. Like so many other doctors in the UK he does not really “believe” in ME/CFS. So, because I am in pain, he gives me Co-codamol and Oramorph. He tells me rather pompously that the Oramorph will help me sleep, because of course, sleep is important! (Gosh, I never knew!)
After nine years when I am dependent on Oramorph (because it does help), he decides that latest thinking means that actually it is not helping, and that – wait for it – it is apparently the Oramorph which is causing the pain!. So he tells me to come off it. He proposes putting me to sleep for two weeks in case I find this difficult. After this, I will come out of the experience what – magically free of pain? With my illness cured? He has obviously found the cure, so I think we should all award him some sort of medal. Luckily the absurdity of it all actually made me laugh rather than cry…