Avindra Nath reports the intensive NIH intramural ME/CFS study achieved its goal: finding consistent biological abnormalities that point to possible treatment options.
You might be forgiven for thinking that #MEAction is “just” an advocacy organization. If you’re on its very active email list, though, you know it’s also a superb communication organization that even does some research of its own.
Avindra Nath said he’s never done a study of this magnitude.
Given that ME/CFS/FM (and now long COVID) research is my passion, I was very excited to see “#MEAction in Research Update: the NIH Intramural Study” to read about how the single most exciting – and potentially important – ME/CFS research effort in memory went.
It wasn’t just that Avindra Nath’s massive NIH study dug deeper into ME/CFS than any other effort (only the OMF’s Severe Patient Study rivaled it) but that it was funded by the National Institutes of Health (NIH) and took place in NIH facilities. Any results coming out of the study would be near impossible for the NIH to ignore.
The study was a stroke of genius for a field, or a disease, that few gave credibility to. The study itself was a complete surprise that appears to have been entirely conceived by the NIH. Indeed, it was of an order of magnitude that only the NIH probably could have funded.
The idea was to get ME/CFS patients into a facility and test them every which way possible. Anything that emerged would be solid and worthy of further inquiry. After spending millions of dollars on the study the NIH was bound to follow up on it.
Once Nath got hold of it, he took care of the first and one of the most perplexing problems facing this disease – the idea that its a wastebasket disorder – by taking extreme measures (a panel of doctors, a week in the facility (!)) to ensure that only people with ME/CFS participated. The two-plus week stay at the NIH facility included everything from two-day exercise studies, to mitochondrial assessments, to a stay in a metabolic chamber, and included voluminous immune assessments, brain scans, muscle biopsies, spinal fluid draws, etc.
The Gist
- MEAction gave the ME/CFS community a nice spring surprise when it brought some news from Avindra Nath, on the results of probably the most important ME/CFS study in its history.
- The goal of the NIH’s Intramural ME/CFS study was to find solid ground to stand on. In that vein, the NIH threw virtually everything they had at their ME/CFS patients who, on their part, had to stand up to the rigor of weeklong or more stays at the NIH’s hospital being poked, probed and stressed in various ways.
- Excruciating levels of detail plus the first week at the hospital ensured that only ME/CFS patients were included in the study which included two-day exercise tests, stays in a metabolic chamber, mitochondrial and immune tests, brain scans, muscle biopsies, cerebrospinal fluid draws and more.
- The study – deep in testing but small in patient numbers – was cut short by the pandemic. Despite that Avindra Nath reported that the study found consistent biological abnormalities and that the results were going to move the field forward “in a major way”, including toward clinical trials. MEAction reported that Nath already had some drugs in mind to try.
- Since the NIH conceived, produced, and funded the study to find research veins to mine, it’s essentially obligated to follow up on the leads found. We’ll know more about those when the papers are published probably this summer or fall.
The study also left behind a strong advocate in Avindra Nath who has talked up the similarities between ME/CFS and long COVID at seemingly every opportunity he had – and he has had many. Still, the study – never very large in the actual number of people in it – was ended early – perhaps too early, to find anything? It would have been a bitter pill, indeed, to see ME/CFS’s big chance spawn successful efforts in other diseases but fail through no fault of its own.
Not so, reported #MEAction. Even with its early closure the study, Nath stated, still found “consistent biological problems”, and he predicted, is going to move the ME/CFS field forward “in a big way”. Even better Nath believes the study will move the field toward clinical drug trials – and Nath has already identified so e possible targets.
“The huge benefit is to move toward clinical trials of drugs. We have a number of different candidates we would like to try”. Nath
It doesn’t get much better than actionable research – something this field has had too little of. You wouldn’t know it by ME/CFS but NIH is actually a huge funder of clinical trials. (The NIH explicitly disallows funding for clinical trials via its ME/CFS program announcement. With its own study pointing in that direction, though, one imagines that has to change.).
Nath said the study would move the field forward “in a big way”. We’ll find out in what directions when the papers are published.
The paper or papers describing the results are slowly coming together. #MEAction reported that Nath’s been meeting with the five main teams engaged in the research since the fall of last year, and they’re wrapping up the discussion sections. Nath stated that he recognized how slow the process had been and felt badly that it’s taken so long but then said that he’d never written a paper of this “huge magnitude” before.
With the NIH’s big RECOVER long COVID research effort finally gathering a bit of steam (over 2,000 enrolled), and ME/CFS advocates pushing to get ME/CFS patients included in the study, this is not a bad time at all to get these papers published.
Time will tell exactly what Nath found but the news is good indeed. Thanks to MEAction for bringing the ME/CFS community a nice spring surprise 🙂
- Read “#MEAction in Research Update: the NIH Intramural Study“
- Next up – #MEAction’s Chronic Illness Survey gets at the real-lived experiences of people with ME/CFS.
H O P E !
Forget about going after the NIH legally. Tens of thousands of Marine Corp dependents were poisoned by the water wells at Camp Lejeune (2nd Marine Expeditionary Force; Jacksonville, North Carolina) while our fathers fought the “Viet Nam Conflict”. (Yes, that is the proper spelling of Viet Nam.) Even though The Corp knew the wells had been contaminated with every reagent you could find in a University Organic Chem lab book, the chronically ill defendants have never been addressed. They ignored us, just like the Gulf War victims. My ME/CFS symptoms started not long after I left the base. I was 12. Now, I’m 62. Even “active duty” Marines and Navy had to file suit against the DOD to have the ME/CFS they contracted at the base covered by the VA. The court ruled that their dependents were only entitled to “medication reimbursement”.
I just want the US government to finally take this disease seriously. My childhood friends from Camp Lejeune that died in their 30’s and 40’s of bladder, liver, or kidney cancer from the well water, are gone. But, those of us that remain battle brain fog, migraines, POTS, IBS, chronic fatigue, tinnitus, (you know the list). Even the FDA will not seriously investigate the thousands of cases in Europe where Ozone, UV light, and hyperbaric oxygen have attenuated ME/CFS, Rheumatologic, and Neuro-immune symptoms. Dr.s Pridgen and Duffy are employing two already FDA approved medications on a very common disease. Why can’t their research be “fast tracked”?
Gulf War Syndrome, ME/CFS and CIRS have ruined the lives of millions of Americans. Combined, these diseases cost Social Security, Medicare, and Medicaid tens of billions of dollars a year. What does it cost our economy in lost production? Yet, Dr. Pridgen is forced to form a drug company to finance his protocol through sluggish stage three trials. On top of that, he is then criticized as a “money grabber”, when the guy is a curious GI surgeon who thankfully asked Carol Duffy to look at tissue from his IBS/Fibro patients. Nancy Klimas was given “pocket change” to try and help troops who had their boots on the ground on our behalf 30 years ago! God sent us good people like Skip Pridgen, Carol Duffy, and Cort Johnson to cut the NIH, FDA, and Department of Defense off at the knees. It is time to start treating this disease. It does not matter if there are multiple causes. Hopefully, we have good news in September!
Cort, I have never read a piece on Ozone on your excellent site. Perhaps, I was half asleep that week.
Unfortunately, I’ve heard more than once that something had been found. Let’s see. Although I do have faith in Nath. We wait. We can’t do anything else 🙂 Cort, do you know when this study will be published?
I see, this summer. Brainfog😀
As I lay here now, tired AF from doing absolutely nothing, after Covid has come and gone and I have severe orthopedic issues in addition to ME, from my neck to my tailbone, this news emits no emotions from within me because after 22 YEARS of WARNING those in charge of what was happening and what others could face, they never listened until suddenly it became a threat to their livelihoods, reputations or both! I’m beyond their “new information” or “new studies” because NOW with an influx of money the longer they take to find a cure the more money they can pull from the grants. My kids lost their Dad at 2 and 7 and now, since COVID they’re slowly losing their Mom because the fight or flight continually kicks in day in and day out because those in charge at the city or county level won’t listen or even check other Illness because I don’t have HIV/AIDS or Cancer! My body won’t take too many more days of that before something else, a major organ, begins to act up!
the people on this thread are as disillusioned as i am after 35 years. i even got to go to stanford finally and nothing worked. side effects were too much. they want me to come in person next, 6 hours away.
So true! I had good results from various herbal treatments (at first) but the improvements didn’t last long. CFS/ME seems to find some way around anything thrown at it. The only exception has been D-Ribose. D-Ribose has allowed me to have a little bit of normality. I stopped taking it for a while but soon went downhill again. In 2004 I ended up with CFS because the emergency staff at our local hospital refused to believe I was ill and they just kept sent me home with paracetamol. A couple of days later my condition got much worse and I was rushed to hospital by ambulance. The medics then told me I had viral pneumonia and I was close to death and I was kept in hospital for a month and given various types of anti-virials. It was tough going and I was lucky to survive. I genuinely feel that my body had readied itself for death, but, somehow, it managed to cancel my death sentence. In doing so, I believe it upset my DNA in some way and several consultants later agreed with me. I started to feel better and beat the pneumonia. However, a couple of weeks later the CFS hit me and I could sleep the sleep of the dead for weeks on end. It took me quite a while to get a diagnosis from the various medics, but when I finally, did, they did everything they could to help. I’
i was being helped by a combo of lions mane, ltheanine and nadh with my morning coffee. then i read nadh maybe be able to promote brain cancer. you are very right that no treatments seem to last. i take them in revolving cycles and sometimes let myself run out of them.
Dabid, I’m really sorry to hear about what happened to you. I wonder if the hospital could have had a mold problem.
My CFS happened because of the combo of a bad viral illness, mold exposure and genetic vulnerability, all at the same time.
“It was important to convince ourselves that there really are biological problems that are reproducible and consistent, and to develop expertise to study ME/CFS, because we hadn’t looked at it before.”
What an admittance.
Despite the positives of this detailed, but also limited study, seemingly done to convince the NIH that ME is indeed a thing, before it “wasted” any other significant money in the field, I must point out that people with gulf war syndrome and many people with severely & moderately disabling ME were made to wait until 2016 for this study to start. With people with long covid complaining at the lack of progress over two years, I wonder who in the chronicle illness field can conceive of patients this sick being made to wait thirty years for the NIH just to start really looking into what was crippling their lives. There is no suggestion of any accountability here.
👍🏻
Yes, the fact that a serious & disabling disease like ME has been neglected – and derided – for as long as it has is unconscionable.
However, at this moment, we have Dr. Nath, and others at the NIH who are championing research into ME. It can’t be easy for them to do this given the decades long neglect. It seems they stand alone. I am immensely grateful for them.
As for accountability for the historical inaction at NIH, I hope that happens someday. It won’t undo the intense cumulative suffering over decades among millions of ME patients, but it would begin the restorative process.
“ It can’t be easy for them to do this given the decades long neglect. It seems they stand alone. I am immensely grateful for them.”
Well said!
Here’s the good news from dumb luck I went on a maintenance program of hydrochloric Quinn twice a week and ivermectin once a week and my energy level has not been this good in 20 years (it’s not always perfect but it’s worth a try. I got Covid three months before it was supposed to be in the US in January 2020 AGH in Pittsburgh threw me out after five days told me they had no idea what I had and they go home and die there’s a lot more to this but everyone of you have the same stories. But give this a try it can’t hurt you
I’ve had Covid since 2002 after a lower back operation got staff infected it took me 15 years just to get doctors to believe me and finally the Stanford blood test with 18 different points to test proved it it was part of Epstein bar HHV6. Anyway I’ve tried hundreds and hundreds just like all of you I’ve got a back room with $100,000 in machines another hundred thousand dollars in remedies and nothing works for him at the time.
For sure. I don’t know if we are ever going to get that.
In Nath’s defense, I don’t think he’s really the guy to speak to this subject. He came into the ME/CFS saga late, acknowledged he knew nothing about it, and has pushed it forward in a really thoughtful way. I was particularly impressed when, after his talks with Workwell, he made the two-day exercise test a part of the program.
Since then he has pushed the case for ME/CFS research and tried to make sure that ME/CFS is not forgotten as the long COVID gets all the attention (which it readily deserves.). He’s basically done all I could hope for.
The problem is that it took the NIH 30 or 40 years to get to the place where we could have someone like Nath take a stab at it.
I really hope somebody writes a book about how it’s been possible for an organization like the NIH to basically ignore millions of very sick, incredibly functionally challenged people decade after decade after decade. The NIH needs to read that book!
Can we sue the NIH?
Cort, I’ve wanted to write a book about ME for so long (the number of articles I have saved!!!)….. Who knows if I’ll ever be able to do it…. If someone else comes along and does it, I will CHEER!
Cort, I agree we may never get accountability for the decades of neglect. Just wanted to let you know that book you’re seeking may be Hillary Johnson’s newest book, a follow-up to “Osler’s Web.” It’s entitled, “The Why: The Historic ME/CFS Call To Arms” and available on Amazon now.
I’m anxious to get my copy, although it will probably take me for-ev-er to read. I have an MA in Reading Ed but can’t focus well enough to comprehend and retain without re-reading multiple times. Frustrating…but this should prove veerrryyy interesting.
Just wondering if this might be one of the prods that is getting Nath and NIH on the ball. Coincidence? I think not. Anyway… Here’s the link if you or anyone else would like to order a copy.
https://www.amazon.com/Why-Historic-CFS-Call-Arms/dp/0578398478
I was a a whistle blower for the state of nj. I was trained in federal grant writing. I was terrified; it’s in my 1st manuscript. My 1st manuscript
is AWFUL. Wish I had started out as as writer/journalist. Publisher. Librarian, hahaha.
drugs will never help. Period.
agreed. a better explanation of what me/cfs is would help, though – a lot.
Why do you think drugs will not help?
I tend to disagree. I think this disease is reversible. But it is difficult to find. And a drug that makes this disease livable could also make a difference. Sometimes the complexity is simpler than we think. There will not be 1 medicine for everyone. But for different subgroups.
Just to note – HR has several drug recovery stories on its website and some more are coming. I would be careful about closing that door – you never know.
some drugs are helping me and have for decades. i was really surprised when i got to go to stanford for a few months that i reacted so extremely to tiny amounts of new drugs or increasing the dose of things i’ve been on forever. it makes me hesitant to try new drugs.
You really have no idea. With peptide therapy and all kinds of advances in our understanding of neurobiology, genetics, and just about every aspect of medicine, it’s very conceivable that a drug will someday help. If you mean no existing drugs will ever help, maybe. But advances are happening everywhere, especially with long covid being a new focus of research. This NIH result seems on the surface nothing but good news, but time will tell if anything meaningful will come of it, drug or otherwise, or if ME/CFS will just keep getting swept under the rug forever.
cort, thanks for the link. I couldnt get it myself!!
I’ll believe it when I actually see it. Thanks for keeping us up to date though
:).
I’ll really believe it when I see that this study causes the NIH actually pump some meaningful money into this disease. How they could wiggle out of that given the stated goal of the study – to find biological abnormalities they could count on – has apparently been achieved, I don’t know. The NIH also needs to find a way to include ME/CFS patients in the RECOVER long COVID research cohorts. Those would be big wins.
Also, Nath does sound more helpful than most, so it is good to have him in our corner. One this you said about long covid getting all the attention that it deserves irritates me. I’m not saying that people with Long covid don’t deserve research and treatment, etc..but we with ME/CFS (and fibro) have been waiting for decades (for some of us, (I’m cureently16 years in) , and I feel we are being treated as less important and less real and less deserving of treatment than the long covid sufferers and this is so incredibly wrong and tet I saw it coming a mile away. Oh well, maybe we will benefit in a backhand kind of way from the reseatch on long covid, but it does not take awy the sting. Also, it seems many long covid people , in time , do recover…I haven’t met many me/cfs people who truly do…we just endlessly adapt and re-adjust to our limitations. Sorry if this post seems negative, it just seems like we are the longest long haulers out there
We are the really long, long haulers for sure! It’s really something to ask of a community that has been waiting for so long to wait longer as another similar disease gets the attention and gets the funding that we’ve been working towards for so long.
I mean, c’mon! That’s the place we’re in, though. We just have to keep reminding ourselves that the long-term trends are good, that what benefits long COVID is going to benefit us, and that in the end, we’re going to reap real rewards from all the attention given to long COVID. In other words, we have to still be patient.
It’ll be interesting to see how many people with COVID-19 come down with ME/CFS. It was always going to be a small number – 5%? 2% 1%? – but so many people have come down with COVID-19 that the total number looms large indeed.
Exactly I agree
ME/CFS has without doubt been treated with no respect. My suspicion is that it is because while the disability rate is very high, it doesn’t seem to result in fatalities the way covid, and earlier diseases such as AIDs, has.
Let’s continue to encourage NIH and Dr Nath- and all of the others who research this condition. Our voices count.
Indeed! 🙂
I feel like we should find a way to sue the NIH for neglect. Many of us have / are growing into “older age” faster than we would if we had help. Having this for over 20 years and seeing myself go down hill the last 8 years at a rapid pace does not give me hope for “my” future. I am glad someone is making progress and doing something but I know others that are at least a decade older than I am that have struggled as long or longer than I have. Most have some sort of adult children that can help them. But what about those of us with no support ? no family ? solo going into senior years where I have already experinced “age descrimination” around some medical issues. I am only 55! I usually feel 150. I recently had an appt with a neurologist and I mentioned ME/CFS he had no idea about it and was not interested. This is in the bay area where we are supposed to have stanford and their ME/CFS clinic ( i can’t say leading ME ) I am really tired of being invisible and gaslite by the medical community. I imagine there are many other with ME/CFS that are exhausted too. I know a lawsuit wouldn’t fix my health but it might wake up the NIH and other orginaztions to bring more awareness and support to our condition.
too many people are losing their lives and not getting the respect and support we deserve.
I am grateful for the progress Nath is making and I hope a solution for better quality of life comes soon. However staring at “old age with ME/CFS” and looking back seeing how much I have lost has not been an easy place to be.
If a solution does come to somehow help us into “remission” I wonder how it will impact the aging 50 /60/ 70 + ME/ CFS community ?
I wish we could sue the NIH for neglect. I don’t know if you can sue government agencies for not carrying out their missions. Its’ an interesting idea
I do – 40 years in – still hold out hope that even after all that time that complete recoveries could be made. One reason is that no one to my knowledge has found evidence of irrevocable physical damage that has occurred.
I would be very happy with significant progress as well 🙂
I believe after more than 40 years, interstitial cystitis and small fiber neuropathy, along with a weakened immune system that allowed me to contract Legionnaires disease and almost died, are all because I contracted CFS in 1978.
i am 63 and have been sick for half my life. the fears are real. my daughter can’t deal with my health, especially chemical sensitivity. i learned not to speak of cfs to neurologists 4 decades ago.
As a 25 year sufferer, I’ve also stopped mentioning CFS to most doctors. Have little to no faith of a “cure”, and if possibilities develop, I have no money to travel to a Doctor who may be willing to try something new.
A former lawyer associated with the govt provided this:
” To wit: As a former government attorney, I can speak to the question about suing NIH for negligence. Unfortunately, any suit would be futile. To sue the government successfully, you have to show that the agency has violated a clear mandatory duty to do something….and almost always to do it by a specified date, i.e, Agency X,Y, Z shall issue a regulation on ABC by Date 123. Since NIH is a research agency exercising discretionary authority, not a regulatory agency like OSHA or EPA, it’s hard to imagine a cause of action for a successful lawsuit.”
Thank you for posting this, Cort. As an ME/CFS long-hauler (37 years and counting), this gives me hope. Fingers crossed this leads to something.
This gives me a dash of hope. Thanks for that bit.
Bobbi
consistent biological abnormalities … LOL what does this tell us?
Yes, good point. Quite a large number of studies have found biological abnormalities, but none of a major nature nor have those abnormalities been able to be stitched together into a ‘narrative’ of how they are generated ie. what is the causative factor?
I am skeptical but I would really like to be pleasantly surprised that the findings are highly meaningful.
Other studies have found “consistent biological abnormalities”. The fact that Nath’s study found them is not in itself unusual. It’s the study that’s unusual. The NIH has been aware of “consistent biological abnormalities” that have popped up in ME/CFS for decades. Those abnormalities have been undermined, though, by small studies with suspect populations.
Probably the key thing this study did was to limit the type of patient – recently sick people with post-viral onset who could be in it – then had a team of ME/CFS experts assess the possible participants – and THEN put them through a week of studies to weed out people who might have other illnesses.
That done – they had a very, very solid set of ME/CFS patients – and proceeded to test the heck out of them. Now that they’e found consistent biological abnormalities in those patients they’ve committed themselves to following up on them. Note that the study always saw clinical trials coming out of this if it was successful.
Why is it important that the NIH conceived and funded this study? Because it has a $45 billion dollar budget – precious little of which is going to ME/CFS at the moment.
I am wondering if insurance companies are covering testing and treatment for Long Covid patients?
i imagine that they are. they at least know covid is real. i had a disagreement with someone on facebook who was very angry that long covid is being believed and cfs is not. i sent her numerous articles that showed they are being discounted and disbelieved pretty regularly too. no one knows what to do with them.
That is great news. I suspect when the same research protocol is run over GWI and long-Covid patients (and it sounds like that will be happening), some very interesting similarities will arise. That on its own will be a huge benefit to the world at large.
Additionally, it may well have the benefit of catalysing some serious review of how:
1. organ specific specialisation
2. lack of scientific curiosity
3. ego driven and doctrine conformance fuelled patient discreditation (e.g. gas lighting because it is unknown what is wrong with you)
4. poor research standards (e.g. GET)
5. embracing pseudo-scientific confirmation biasing (e.g. the hysteria diagnosis being professionally negligent, mass hysteria labelling being nothing short of witchcraft)
6. ignoring large scale, historical evidence in favour of small scale, unsupported aetiological theories (e.g. disease increases after pandemics vs CBT)
7. professional cowardice (i.e. this field is bad for my career)
8. committing the scientific cardinal sin of confusing an absence of evidence with evidence of absence
9. an inability to quantify disease burden or prioritise efforts based on burden (e.g. it is horrendous for severe ME/CFS sufferers and happening again with long-Covid)
has resulted in a disease this serious being neglected for decades.
And if it turns out in a year or two that ME/CFS, GWI and long-Covid are complex but accessible by existing, non-novel medical research, that will be very important. If all that was required to understand these diseases was more effort and investment, that will be of far greater utility in driving reform than speculating in hand-waving institutional short comings (not that it stops me).
The Headline reads success . Then you tell us nothing! This disease is viral related and the immune system inability to clear them.They are hard to detect with serology tests and different people may have different viruses active and so not everyone has the same symptoms. We should be treated the same as HIV patients with the same medications. The latest trials for HIV medications is monoclonal antibodies which helps the immune system. Which is the same area we also need help.
Please be more conservative with the word success. Specially as a first word with exclamation point in the title.
I’m actually quite baffled as I see this report as a huge success. I see three different types of success. Nath said that the study will
That’s really big news for me. What would have counted as a success for you? What am I missing? Maybe because I’ve watched this study so closely and have had such high hopes for it (and fears if it did not succeed) that Nath saying basically that the study worked out was a big win for me – but not for others – who maybe want more concrete results (???)
Well, the goal was for the NIH to find distinct biological abnormalities that would form the bedrock of expanded efforts by the NIH to understand this disease – and it did that. We’ll have to wait to find out exactly what they found.
The fact that a disease is “viral-related” does not a priori mean that the virus is still present, though. If that was true the millions of people with autoimmune conditions would all be taking antivirals of one sort or another. Instead, many of them are on immune suppressants If a virus was causing their problems an immune suppressant should be disastrous for them.
I know that Prednisone could help a subgroup of ME-patiënts. But it could have serious side effects. https://en.wikipedia.org/wiki/Prednisone
Some patiënts i knew had a low dosis and feel much better and could even return to work (parttime).
Good grief. The success lies in there being a huge reliable study by a recognized organization; we don’t know the final details on results and going forward but can we not have a little hope. I’ve dealt with CFS/ME since 1990 and to hear about a large respectable study like this one makes me have some hope, particularly after 32 years of non-answers, doctors denying I had any illness, insults from psychiatrists, GPs who know nothing but refuse to read the research studies I forwarded, and of course scorn from employers. I have to believe there will be if not a cure than some treatments that will make life easier for us. Look how much we know now compared to even 10 years ago. C’mon. Let’s try to think positively about this news.
:). I was thinking about this – as being enmeshed in the research of ME/CFS as I am – I was nothing but excited about MEAction’s report. .
I think, though, that the prospect of hopefully moving forward in a major way – particularly if the NIH is involved – naturally brings up thoughts about – well, where the heck were you when I needed you 20 or 30 years ago? Why did it take you so long?
Just an apology and a recognition that they could have done better and that not doing so has caused a lot of harm would go a long, long way I suspect. It may be that ME/CFS is so complex that even a concerted effort wouldn’t have helped much given the tools we had decades ago. It sure would have provided some relief, though.
At times federal agencies have acknowledged when they’ve made mistakes and caused harm. It takes a lot and I don’t see much to suggest that the NIH has enough guts or commitment to its integrity to do that. Until it does that the anger and resentment will linger.
Hopefully, though, we’ll have better news in the future to focus on.
Thank you, Cort, for the report. It’s been more than 20 years for me. As my GP likes to say, “except for the CFS, I’m in pretty good shape.” However, I know that no research will affect my life. I’m 67, and proper drug trials take ages, and no one’s going to prioritize the oldest of us or those who’ve been ill the longest. New cases will more easily be treated—and so will young people. Meanwhile i focus on my own day-to-day. More than 20 years ago a doctor told me to accept that for the rest of my years, I’d have 2, perhaps 3, good hours a day, but no more. Nothing has happened to change that.
Let’s just see BD. Long COVID should trigger a ton of clinical trials. If some of those are successful then they should quickly filter down to knowledgeable doctors who are willing to give the treatments a a try in ME/CFS as well.
Educating doctors about long COVID and ME/CFS is one very good reason to support advocacy efforts as the federal govt can play a large role there.
Cort, well said about the long, long haulers (us with ME/CFS). I can see you are in agreement at the injustice here. Wouldn’t it be awesome if we could all sue the NIH. It is a fantasy that brings a smile to my face!
Me too!
In 2015, the IOM report came out showing that ME/CFS is a biological disease. But it seems we are still trying to prove that here all over. After 36 years of illness beginning in 1986, I’m tired of hearing about studies that may, might, could provide some treatment some day. Are the results from this study even out yet? What treatment does the study point to? It seems like it just points to doing further studies? For some, this may provide hope and that’s a good thing. I hope something actionable comes out of it eventually. And I am glad some work is being done at least. But for me, having been through this for decades now, I no longer expect anything that will be of help to me in my remaining lifespan. But I hope there will be something for younger generations.
The papers are not out – he is working on them. Yes, it will “point” to new studies but hopefully, this is not just yet another study that “just points” to more research but never ends up where it’s most needed – improving people’s lives. Hopefully, this is a study that finally gets the NIH and its immense resources onboard with ME/CFS. That was the purpose of the study.
How quickly that will happen I don’t know. And it may not happen quickly enough for us long, long, haulers. I really would NOT give up on that possibility, though. I would not be surprised to see repurposed drugs that no one has even thought about yet show up.
Given the pitiful treatment possibilities present I would have to assume that we’ve been on the wrong track for a long time – which in a way is hopeful. If we get on the right track who knows what will happen?
I sincerely hope that we can do more than celebrate the younger generation’s success!
Time, of course, will tell.
It’s too early to talk about suing. If there is hard evidence that ME is an objective disease and can be diagnosed by doctors in other countries. Then you can show that the medical community has been mistreating ME patients for over 50 years. This will be one of the biggest medical scandals ever. Mainly responsible for that will be the Wessely school and its supporters.
As a doctor you will be partly responsible for all that extra unnecessary suffering that has been caused to ME/CFS patients.
The medical community will be too arrogant to admit it. They will say: we didn’t know that then…….
I was intrigued by Esther and Cort’s comments about “the younger generations” of patients with ME/CFS. Just how young are the most recent patients to be diagnosed with ME/CFS (not long Covid). I think the answer to that question could be very informative.
Cort, There is an article in NYTimes about a woman with long covid (and POTS, ME/CFS). She took her own life. After reading the top comments highlighted by readers and the paper you will feel very pessimistic. All of her condition by the commenting physician at the top was blamed as delusion and the effects of depression. The fact that she has been a recovered alcoholic (and helps others for a long time) was seen as evidence as well.
no mention of the possible treatments? or did I miss something?
Way, way, way too early for Pollyanna optimism. The paper isn’t even fully written up yet, let alone submitted or passed through peer review, and you’re already judging it a success?
The usual suspects will dismantle this study based on the low N, as they should. It’s fallacious thinking to suppose that just because the NIH did it their findings are somehow more valid or don’t require independent replication by other teams, on a much, much larger cohort.
Treatments aimed at downstream abnormalities are unlikely to ever help this disease. This should be very obvious by now. One of the most consistently replicated findings in this disease, across decades now, is evidence of persistent immune activation. There is only one “treatment” for that, immunosuppressive treatment, which has already been trialed multiple times over the years with steroids, biologics, immunoabsorption, etc., with no positive results.
If they are going to try to approach putative metabolic abnormalities with drugs, this will also likely fail as well. Exertion is poison for this disease, it exacerbates symptoms and/or can (often permanently) increase the severity of the disease. There is a very specific reason for this. Trying to push the already broken metabolism of this disease with drugs will at best not work, or at worst will make the actual root problem even worse.
Well, you’re just a ray of sunshine!
The number of patients in the study was always low but the patient exclusion process was so rigorous that I think they felt that anything they found would be worthy of further investigation. The design of the study was to open avenues for further investigation not proclaim that “x” caused ME/CFS.
I never said that that the study findings were more valid than other larger study findings or don’t require independent replication. I always try to note that small study sample sizes in particular require replication as do new study findings.
I said – the NIH is obligated to follow up on these findings because the whole purpose of the study was to find consistent biological findings they could follow up on. For sure, we’ll see if the NIH keeps its word. That’s probably the biggest issue. I suspect that they will because they do trust their own results. I would feel a lot more comfortable, though, if Francis Collins was still around.
“Treatments aimed at downstream abnormalities are unlikely to ever help this disease.” Why would that be, though? Chronic diseases are almost universally helped, when they’re helped, by attacking downstream mechanisms. I imagine that LDN helps in that way in ME/CFS.
I don’t believe that persistent immune activation has been consistently replicated in ME/CFS The only consistent immune finding that’s been replicated in ME/CFS that I know of is impaired natural killer cell functioning. Other immune findings tend to inconsistent at best.
I don’t understand why the sole way to fix a metabolic problem would be to “push it” with drugs? Wouldn’t it be better to try to fix the problem by enhancing the metabolic process that’s been damaged? And why not do that with a drug?
By the way, some people actually do quite well with stimulants. I agree that seems strange but it’s amazing how many different ways people are helped. A doctor is so jazzed at that that he actually wrote a book dedicated to encouraging the use of stimulants in ME/CFS (who knew?). So apparently it is possible to “push” the system safely and effectively in some people.
It’s a wild world.
Has anyone wondered where Cort gets all the energy from to write all the comments if he truly has CFS. Most people with CFS making one is enough.
I think that often, in the context of “if Cort’s had this for 40 years (something like that) and he’s now writing these blog entries, there’s hope for me yet.” He’s written blogs on recovery stories. Have you noticed, Dennis, that the recovered are rarely here commenting? It’s us in the thick of it, sometimes commenting on the topic, more often venting about our current state and our fears.
I’m severe and housebound. Some days I can’t write a sentence. Some days, like today, I write a paragraph! I visit several times a week. Keep up the good work Cort.
That’s a good one, Dennis – you’re really on a roll!
I’m sure others wonder the same. It’s certainly true that I can do a lot more cognitive work that most people with with this disease.
Just so you know I’ve had ME/CFS for about 40 years. I came down with it in college, dropped out, got very, very skinny and very sick, was out of commission for a couple of years, got better – was able to complete my BS and even eventually after perhaps the longest MS program in history (I turned a two year program into about a 10 year one).
I used to be VERY athletic and enjoyed exercise immensely but have been unable to engage in anything resembling strenuous physical exercise without experiencing dramatically increased symptoms including hot burning muscles, severe fatigue, poor coordination, dramatic reductions in cognitive functioning, exacerbated chemical sensitivities, etc. since then.
I’ve been diagnosed with ME/CFS by several ME/CFS experts including Dr. Buchwald in 90’s (I took part in a week-long study), by Dr. Cheney, and Dr. Klimas.
While it’s probably fairly unusual it is possible to have some cognitive resilience while very having little physical resilience.
An exercise test I took, for a study, for instance, indicated that I had “mild to moderate” ME/CFS but was still “probably not producing enough energy to comfortably carry on the daily tasks associated with living.
I’ve always felt that mild-moderate assessment really typified how horrid ME/CFS is as I can hardly do any physical exertion without payback yet I’m classified as having mild-moderate ME/CFS.
The test found that My oxygen uptake at max VO2 peaked at less than 75% of predicted. It indicated that I had quite a small activity window before my system spiraled into anaerobic energy production causing me fatigue and pain. My heart rate didn’t reach the peak it should, U had lower than normal stroke volume, and my breathing was off.
All that in a one-day exercise test. A good subset of people with ME/CFS don’t show significant abnormalities until the second day of a two-day exercise test.
https://www.healthrising.org/blog/2018/11/15/anaerobic-thresholds-fatty-acid-problems-and-autophagy-dr-klimass-exercise-study/
While I can only engage in very small amounts of physical activity I can still work cognitively if I keep my activity levels low.
Appreciate your so much, Cort. We would be in the dark without your decades of reporting the latest that is being researched from the brightest minds. Thank you …
Thanks!
“ if he truly has CFS” – how beyond the pale to doubt a fellow sufferer — particularly Cort, who has worked so hard for decades to move things forward! Shameful.
How very sad Dennis Copeland to see someone doubt Cort’s illness. I myself am not typical regarding cognitive difficulties but am bedbound because the slightest physical exertion makes me extremely sick. How often have you seen it written that we are all different. No treatment is going to be good for all people but if there should be something that helps some of the people let us be happy for them. Hopefully in time there will be something for all sub-sets. I don’t anticipate it happening in my lifetime as I am 80 years old but I would rejoice to hear that there could be something found that could help someone with this hideous illness and I thank with all my heart those people who are working to try to help us. I thank Cort for his tireless efforts to bring us information about what is going on in research today and bringing with it even a tiny glimmer of hope that some day in the future people with ME/CFS will not be doubted, stigmatised and sidelined and have some chance of a better life.
ME/CFS/POTS has degrees. Just like any other disease. In addition, there is a progression over time. There are people who are mainly bed-bound for the first few years and then house-bound. And there is a group that can still function with limitations.
That says nothing about how someone feels. I’m happy for Cort that he can still function well cognitively. And also a little bit jealous of people WITH ME/CFS/POTS who can do more then myself 🙂 But i wish them all the best.
I have no doubt Cort has some form of ME too. And i don’t think he needs to defend himself. Now people judge just like doctors do. That makes me sad.
I’m so happy with all the work Cort does, even though we don’t always agree. But that is not necessary in science. We learn from that.
This is a good study indeed. It should have been done years ago because it is a logical structure for a misunderstood illness. Most work to date has given several directions to move along. I doubt that drug therapies that come from it will be immediately available and that drug therapies will only treat symptoms for some time yet because our knowledge is not yet fundamental.
Since covid-19 pandemic we have opened the door to funding better research into post viral disabilities – which ME and FM are.
Thanks for reporting the work of Nath and you have consolidated health rising as the #1 site for broad ME research information. Well Done
You guys ever heard of the ‘International Consensus Criteria” 2017 for myalgic encephalomyelitis? no? oh well never mind.
I don’t quite understand why you’re calling it a success when these predictions of his have not yet happened.
It also just pisses me off that Ron hasn’t been able to get funding from NIH. He could make so much more progress. I guess I’m a broken record at this point. Ugh. But they are making progress anyway. Just not as much or as fast as they could have.
And the Severely Ill Patient Study was huge. It is published.
Janet, has has anything progressed with the ‘something in the blood’ findings??
:). Hopefully, Nath knows of what he speaks, and the paper or papers to come will indeed propel the field forward in a major way – AND the NIH will put some good money forward to follow up on. That’s what they promised to do. We shall see!
We ALL wish Ron and so many researchers, really, had been able to get better funding from the NIH. Of course, he’s not the first to be flabbergasted at the brick wall he ran into there once he started looking for ME/CFS funding. (
Yes, there was that initial publication – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8535418/ . The major biological findings – the “Lower morning cortisol level and alterations in its diurnal rhythm” and lack of evidence for “common viral or bacterial pathogens” has been seen before. Hopefully, further papers from the study will provide more insights.
@Janet Dafoe
Could you add a link to most current info from Ron?
Also, is it possible that the thing in the serum/plasma is granules released from platelets? ( not platelets themselves).
https://onlinelibrary.wiley.com/doi/full/10.1002/rth2.12239
“Blood platelet research in autism spectrum disorders: In search of biomarkers”
“…….. In particular, platelet-dense granules contain neurotransmitters such as serotonin and gamma-aminobutyric acid. Molecular players controlling granule formation and secretion are similarly regulated in platelets and neurons. The major platelet integrin receptor αIIbβ3 has recently been linked to ASD as a regulator of serotonin transport. ”
I hate waiting, constantly, for news. I don’t have time anymore. I need to feel better.
I wish we did not have to wait.
Cort I appreciate your enthausim and amazed and how you have retained your brain capacity for so long with this illness!
I have a neighbor with a camper van and he has put solar panels on and he takes off for months at a time.. he does not have CFS though.. but i have watched his van evolve..and wonder could i do that if i wasn’t trying to help other people when i get 2 mins of “good energy” ? and why do i try to help others when others often do not help me?
ok back to our topic about a lawsuit.. even if we didnt win we would still make headlines (most likely) and that “might” bring attention to our cause?
also there is the AMA american medical association?
my neighbor is a civil rights attorney and they sue goverments all the time. So that is what gave me the inspiration.. they are a non profit.. but saddly no one at their org is working for people with disablities. darn!!
she suggested a couple places and i have no idea where i put the info.
i do feel like we all have suffered and lost sooo much not to mention the years of emotional abuse being “gaslite” told it’s in our heads.
I also know as a patient of the CFS clinic at stanford there is a deal of neglect happening. (this is another issue in and of it’s self)
and the fact that currently most ME/ cfs doctors do not take insurance seems to be another descriimination.. we would have to do some research about the best way to approach and it might not get us a cure or anything.. but i think raising awareness is important.
remember that Erin Brovich story? they took on major $$$ corporation
i dont know anything about lawsuits I have never really liked the idea.
except in the last 2 years I have learned.
1. studies and treatment have happened in the HIV arena so that you can now take a pill to have unsafe sex with an HIV ++ person. amazing huh?? good for those that may need it.
(we are just trying / hoping to be able to do our dishes and feed our cat, would be great to have a dog.. but i can’t keep up with me. )
2. a person can have a complete sex change quicker that it takes to get a 1x appt and follow up with ME/ CFS clinic at stanford ( probably the only one that takes insurance left to us)-not that they have any answers.
3. rich people can go out in a rocket and take a gander at the planet and come back.. all before I can get my kitchen counter cleaned off. !!.
4. I need to move out of the bay area becasue rents are going through the roof and because of this disabilty I literally have no idea how /where to start and homelessness seems like an easier option.
curious if the former govt attorney asked has ME/ CFS or any other unrelenting chronic illness?
seems like someone should be held accountable. ??
sorry i have become jaded over the years.. i didnt used to be. but the last 8 have been hard.
thanks for your time.
this is a bit old and i can digest it right now..not sure if it helps or gives any ideas?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1326440/
healthcare attorneys their reference mentions different circumstances.
but… hmm..
https://www.bricker.com/industries-practices/health-care/insights-resources/resource/abuse-neglect-or-endangerment-of-patient-91-1037
interesting this is “drugs for neglected disease” covid is on the list.. but we are not 🙁
how do we get on this list?
https://dndi.org/
“Results: We find the disease burden of ME/CFS is double that of HIV/AIDS and over half that of breast cancer. We also find that ME/CFS is more underfunded with respect to burden than any disease in NIH’s analysis of funding and disease burden, with ME/CFS receiving roughly 7% of that commensurate with disease burden.
Conclusions: To be commensurate with disease burden, NIH funding would need to increase roughly 14-fold.”
https://pubmed.ncbi.nlm.nih.gov/32568148/
and I just found your really nice post on this – preaching to the choir!
i wish I had “hope” i had it for 20+ years but maybe i will find it again.
i can hope that i get hope right?
https://www.healthrising.org/blog/2021/04/03/chronic-fatigue-syndrome-most-neglected-disease-nih-national-institutes-health/