Which will be the next drug to be FDA-approved for FM or ME/CFS?
Both fibromyalgia (FM) and chronic fatigue syndrome (ME/CFS) clearly need better treatments. The FDA-approved drugs for these diseases are too often ineffective, come with too many side effects (fibromyalgia) or just aren’t available at all (ME/CFS).
Too many people remain in pain, unable to work (or work well), be active, get out and visit and do the things they used to love to do. Alternative health treatments and mind/body techniques can certainly help, but for most of us significant relief or a cure is probably going to take the form of a drug or other FDA-approved treatment that insurance companies will pay for. Hence the focus of these overviews on drugs.
In part one of this series, we looked at the recent disappointing drug trial failures and one drug that’s managed to revive itself after a near-death experience. In this one, we look to the future – at clinical trials underway or reported to begin shortly.
This overview doesn’t cover supplements, diets, exercise or mind/body treatments – all of which are undergoing trials in these diseases. If you’re interested in being in one of the trials mentioned, clicking on the link will take you to the trial in the clinialtrials.gov database.
Fibromyalgia
At over $3 billion a year in the U.S. alone, the market for FM drugs is a hot one.
Big Market! – The FM market in the U.S. is estimated at nearly $3 billion annually. According to a recent analysis, at least five pharmaceutical companies/startups (Aptinyx, Inc., Prismic Pharmaceuticals, Inc., Innovative Med Concepts, Inc., Intec Pharma Ltd., Astellas Pharma, Inc.) have drugs in the pipeline for FM. A Pipeline Report lists 13 companies pursuing drug treatments for FM and covers over 20 drug profiles.
A cough suppressant for FM? Jarred Younger is trialing dextromethorphan – a possible microglial inhibitor – in fibromyalgia in Alabama. (The microglia are immune cells in the brain that produce neuroinflammation.)
Vaccine? – Some people with ME/CFS recoil at the idea of getting a vaccine, but a staphylococcus vaccine worked well for a Swedish doctor with ME/CFS for decades. Now the Faustman Lab in Massachusetts is attempting to activate the immune systems of FM patients using the bacillus Calmette-Guérin (BCG) vaccine.
Pain Pathway Modulator? – An interim analysis of Aptinyx’s NYX-2925 fibromyalgia trial showed good results. That’s good news because their big neuropathic pain trial recently tanked. NYX-2925 is an N-methyl-D-aspartate (NMDA) receptor modulator, and the studies are taking place in Michigan and Ohio.
The New Naltrexone? Was low dose naltrexone (LDN) just the beginning? Jarred Younger is exploring a potentially more effective and side-effect free version of LDN called dextro-naltrexone. (Not in clinical trials…)
Stimulating! – seven different magnetic stimulation studies are under way or will soon be recruiting.
Soft Tissue Manipulation (massage?) – Dr. Liptan has said that massage is the best thing for FM. If you’re in Madrid, you might be able to check that out for yourself in a “soft tissue manipulation” study which hopes to increase its participants’ heart rate variability levels.
Innovative Med Concepts – When last heard from (last summer) Dr. Pridgen’s attempt to raise funds for two phase III trials for his antiviral combo had failed but another phase II trial was in the works.
Tomnya: The Lazarus Drug – If Tomnya (TNX-102) can improve both sleep and pain (and help with PTSD if you have it!) in FM, Tonix Pharmaceuticals will have a real hit on their hands. Check out a drug that’s come back from a near-death experience and should enter trials soon.
Mystery Drug – The Astellas Pharma ASP0819 Phase II study recently finished up, but it’s worth noting because it was large (n=186) and took place in dozens of centers over the past four years. It’s also a complete mystery. Astellas is holding info on ASP0819 close to its chest: I couldn’t find any information – even in the scientific literature on the drug.
Getting Oxygenated – The first FM hyperbaric oxygen trial went quite well. With the 60 90-minute hyperbaric oxygen sessions (five days every week) in this Israeli study, the FM patients are getting pounded with oxygen. A French study may be doing them one better, though; it’ll be comparing the results of hyperbaric oxygen with transcranial magnetic stimulation.
Diabetes Drug? – Half the FM patients in one metformin retrospective FM study reportedly recovered quickly. Could it really be so easy? One metformin trial in fibromyalgia has been completed and another is under way.
Ear Therapy – FM patients in France will get what appears to be ear acupuncture or auriculotherapy, which the investigators report works in their clinic and has been validated by the World Health Organization (WHO) since 1987.
Shocking… – Shock-wave therapy, the investigators report, has “been used successfully to treat painful skeletal muscle, tendons and fascia” problems. They’ll be trying it in Switzerland if you’re in the neighborhood.
No less than 10 studies are looking at some form of acupuncture (electroacpuncture, dry needling) in FM and myofascial pain syndrome. (If insurance companies would approve it, I’d give it a shot in a minute…)
Lyrica generics coming – Pfizer has hauled in $30 billion from Lyrica in the U.S. alone over the past fifteen years, but the drug manufacturer’s cash cow will be ending soon. Fierce Biotech indicated that Lyrica generics from Teva, Mylan, Sandoz and other companies should be hitting the market soon.
Chronic Fatigue Syndrome (ME/CFS)
Market? What market? Does Big Pharma care about an untouched million-person market? Apparently not. While they throw money at fibromyalgia, they’re still afraid to stick their toes in the water for ME/CFS. That seems crazy, given that many would probably be tempted to sell their first-born for a chance at a good drug.
While it’s not coming from Big Pharma, there is hope, though. It’s coming from small drug companies (Cortene) and doctors and researchers (Dr. Klimas and the Institute for Neuroimmune Medicine, Dr. Naviaux and the Open Medicine Foundation, and Dr. Peterson and the Simmaron Research Foundation).
Let’s not forget the work Ron Davis is doing testing drugs with the nanoneedle, or the Solve ME/CFS Initiative’s Ramsay award to Vincent Lombardi to search for an immune-based drug target. Either could reap major dividends if they work out.
Cortene – The big surprise of last year – the Cortene drug trial – has finished up at the Bateman Horne Center, and we are awaiting results.
Klimas Drug Trial – this most fascinating of trials used supercomputers to come up with its Etanercept (first) and Mifepristone (later) combination. The goal – to reset the systems of Gulf War Illness (GWI) and ME/CFS patients and return them to normal functioning. The Gulf War Illness trial is probably finished or is nearing finishing, and another similar small trial has started or will be starting soon in ME/CFS.
Klimas Methylfolate Study – talk about a down-in-the-dirt, practical, study. Dr. Klimas’s methylfolate study to determine if a genetic defect is causing folate problems in ME/CFS and if the proper supplementation will help is reportedly done. It won’t cure ME/CFS, but any boosts in energy and well-being are certainly welcome.
Suramin – Can Naviaux turn back the clock, dig patients out of their hypometabolic, hibernation-like, worm-like (that’s the C. elegans worm) dauer state with a drug used for African Sleeping Sickness? The problem has been getting access to the drug – which reports indicate will happen at some point. The small Surinam autism trial went well…
Younger’s Plants – So the study is on Gulf War Illness, not ME/CFS – but if Dr. Klimas can try to treat GWI and ME/CFS with the same drug combo, we can put Younger’s botanicals study into the ME/CFS category.
Younger has hinted that some botanicals may actually work better than LDN at reducing neuroinflammation. The data analysis of his large botanicals trial is underway. We should have it by the end of the summer.
Mestinon – Some patients have reported doing very well on Mestinon (pyridostigmine bromide) while others haven’t. Dr. Systrom will reportedly be publishing a retrospective study on the effectiveness of Mestinon in treating exercise intolerant patients with ME/CFS, FM, POTS and allied disorders. Several studies are underway in POTS.
Ampligen – Talk about the need for a miracle. ME/CFS’s perennial disappointment, Ampligen, has been in play for over 30 years now without getting approved. The FDA says it wants one more big trial, to which Hemispherx responds it can’t afford it – leaving us in limbo once again. Only Hemispherx truly knows what’s going on.
There is some good news, however. Dr. Peterson, the Simmaron Research Foundation, Maureen Hanson and the CDC are working on quantifying Ampligen’s effectiveness and determining why it’s effective when it is. More on that coming up.
The Disappearing NAC Study – At the 2016 Fort Lauderdale IACFS/ME conference Dr. Shungu reported some surprisingly good results from NAC supplementation (too good he thought!). If I remember correctly brain scans suggested that the NAC had done what he had hoped it would – replenish glutathione levels in the brain. The study, however, has not been published yet.
The Other Chemotherapy Drug – Rituximab didn’t pan out but Fluge and Mella are not giving up. They’ve been trialing another drug, cyclophosamide, an older and reportedly harsher drug but one which has a broader immune effect in. Results from the 40-person CycloME trial should be out soon. (Thanks to Chris.)
Rehydration for Better Health – Medow’s study using oral rehydration formual to improve orthostatic intolerance in the notoriously blood volume deficient ME/CFS patients should be done and will hopefully be published soon. Medow believed the oral rehydration formula might be as effective as IV saline…
Pain
Next generation opioids – we know now that it’s theoretically possible to create opioid drugs which are not addictive, do not lead to tolerance or increased pain sensitivity, etc. Whether industry will be able to create them is another issue. I looked through 200 of the 779 opioid studies underway and found not a single one featuring next-generation opioids. Their time has not yet come. Perhaps the HEAL Initiative will help…
Heal Initiative – the NIH is pumping hundreds of millions of dollars into pain and pain drug research in a very ambitious effort to come up with 15 new pain drugs over the next 5 years.
Other Fatiguing Diseases
Because severe fatigue is a huge issue for other diseases, it’s possible that a drug breakthrough that treats the fatigue in them could bleed over into ME/CFS, FM and related diseases.
Cancer-Related Fatigue
Riluzole, dexamethasone, methylphenidate, metformin, armodafinil, guarana, anamorelin and naltrexone are being trialed for cancer related fatigue.
We should probably keep an eye on riluzole, a glutamate antagonist, that researchers hope will decrease central nervous system glutamate and inflammation and improve fatigue and cognition. Andrew Miller, who has published on ME/CFS, is leading the trial.
Anamorelin is another intriguing drug. It increases levels of growth hormone (GH), insulin-like growth factor 1 (IGF-1), and insulin-like growth factor-binding protein 3 (IGFBP-3). Plus, it gives one the munchies, and increases body weight and even muscle strength. Armodafinil is often used in ADHD and ME/CFS to improve cognition and energy. Metformin treats a mitochondrial issue (AMPK activation) that appears to be present in ME/CFS and FM. A trial is underway in FM.
Multiple sclerosis-related fatigue
MS is one of the more severely fatiguing diseases known. More MS patients report significant problems with fatigue than for any other symptom, and it’s often one of the first symptoms to manifest itself.
Suvorexant, carbidopa, ketamine, transcranial direct magnetic stimulation and modafinil are being trialed for fatigue in multiple sclerosis.
Postural orthostatic tachycardia syndrome (POTS) studies
Mestinon (twice), Ivabradine, droxidopa (Northera), IV albumin, IVIG, phenylephrine are being trialed. Notice that droxidopa is also being trialed in both POTS and Parkinson’s disease.
Parkinson’s Disease-related fatigue
Cannabidiol, droxidopa, Nabilone, transcranial stimulation. Two Cannabis drugs are being trialed in Parkinson’s Disease to reduce fatigue (and other symptoms).
Diabetes-related fatigue
Nicorandil and Glimepiride are being trialed to see if they can reduce the fatigue in diabetes through their interactions with ATP sensitive potassium pumps
Thanks for the report, Cort. My comment is actually wondering out loud why the little box at bottom we used to check to get informed more comments had been added is no longer there, now harder to keep going back to look at each of your reports for new comments.
I have no idea! I will check with Stavya 🙂
Re Ampligen. Didn’t I read somewhere that the old version is out of patent? It would be good if it could be manufactured and we could do our own trial.
You would think a drug created decades ago would be out of patent but in 2014 Hemispherx received an extension on it until 2029.
https://www.globenewswire.com/news-release/2014/05/27/639572/10083224/en/Hemispherx-Receives-New-U-S-Composition-of-Matter-Patent-Covering-Ampligen-R-Formulations.html
Nice summary, Cort!
Where are the clinical trials on FMTs?
Also, many of us with MCAS are allsrgic to fillers in many of these medications.
I have been greatly helped by compounded pyridostigmine bromide (the active ingredient in Mestinon) and now it is not available anywhere. So, there’s a treatment I know works and it is impossible to get. Systrom, Rowe and Bateman all have shared successful case studies with it – do they realize its not available?
The FDA has been making it more and more difficult to compound, but until they stop allowing drugs to be made with major allergens like gluten, corn, and milk, even if the FDA approved versions are found to help ME/CFS patients, those of us with mast cell issues and allergies will not be able to take them unless they are available as bulk compounding substances (like ketotifen and LDN are made today). Or we can take them and risk death from anaphylaxis.
Wow…Did you try Skip’s Pharmacy in Ft Lauderdale I think it is? I just got a link to a report on this but I can’t find it. It was very alarming…I was surprised at all the junk drug companies put in there.
I was very curious about ASP0819 – my digging found that it is classified as a Calcium-activated potassium channel opener. The last data was in September 2018, data from the Phase I trial was shared at the World Congress on Pain.
Also of note is the study DI is doing with IVIg in POTS – NCT03919773. I’m presently receiving IVIg treatment and it is helping many different symptoms I experience.
I was intrigued by that drug too. Usually you can find something in the scientific literature but not that one.
Thanks for the tip on the DI trial. I will put it in 🙂
Hi, I just saw a presentation at the Pain & Migraine conference in DC (https://www.paintherapeuticsummit.com/) by Astellas, showing that the Ph IIa clinical trial with ASP-0819 was successful in FM patients, with statistically reduced pain scores and improved sleep. Bad news is that they may not be progressing this into further clinical trials themselves, so it needs to be licensed by someone else to take it forward. Data looked very good…
Thanks for passing that on:)
Cort, a really excellent and thorough overview. Also a hopeful one. Thanks for your sterling work; very glad you’re on the case.
Ruth
I wonder if the vaccination benefit is a similar principle to feeling much better after a cold for about 3 weeks?
Great overview, Cort!
Thanks for mentioning Dr. Klima’s methylfolate study. I participated in that and even though it was double blind, I could tell I was in the placebo group, which was confirmed later. I also noticed a shift (for the worst) in my before and after labs. Not a cure, but it does make a difference.
Regarding the Riluzole research which seeks to decrease glutamate, I have recently read some very encouraging trials using sulforaphane to both increase and more importantly BALANCE glutathione levels in the brain. I believe you wrote a piece about improvement for some using N-Acetyl Cysteine, which is a glutathione precursor.
Seems as if sulforaphane is the key ingredient. For us do-it-yourselfers, broccoli sprouts, which contain high levels of sulforaphane, work just about as well! There is more and more evidence they can be very helpful in brain function, are cancer protective and more. IMO there are some of us whose ME/CFS is influenced by our biome and adjusting it, perhaps by using specific foods could prove helpful. I’m going to try this in my own N=1 study! Every little bit helps…
At the end of the month, I have an appointment with Stanford’s ME/CFS Clinic and if I learn or experience anything ‘newsworthy’ I will report back. Kindest wishes all round to all who suffer from this sorry disorder!
Thanks Nancy for reminding me about Dr. Shungu’s study – which has never been published, I don’t think. I just included it. I didn’t know about sulforaphane but if it possibly helps to tamp down neuroinflammation I’m going to focus some more on cruciferous vegetables.
Good luck with your doctor’s appointment. Hope we hear some good news from you 🙂
Great summary! I’m am most interested in the results from Nancy Klimas’ study. Do you know when she’ll have an update?
I don’t know. Hopefully soon. The nice thing about the study was that it was done with crowd sourced DNA results – basically a community project.
Hi
A friend of mine who has CFS/ME and Lyme has just done 10 months on the Pridgen antiviral protocol and is 80% better having been virtually housebound for 6 years.
I have been sick for decades and have tried so many different protocols to get better and none has helped.
I am going to start Dr Pridgen”s Protocol in the next few weeks myself.
Wow…That’s great to hear and she/he is not the first. I tried the protocol, it seemed to be working but I had a couple of issues: for the first time in my life acid/reflux problems and I didn’t want to stay on ant-acid meds full time. Seven months later I still mild acid reflux. Hopefully it will disappear at some point. The other thing that happened was that the significant progress I’d just made with chemical sensitivities disappeared.
That said I think it’s completely worth a try. Pridgen has engineered some amazing recoveries. Good luck!
Please keep us all posted. God bless!
Fluge and Mella plans to publish their study CycloME part A using Cyclophosphamide, in first half 2019. Part B of the study is going on at present.
https://helse-bergen.no/seksjon-engelsk/seksjon/Cancer%20Treatment%20and%20Medical%20Physics/Sider/CycloME.aspx
https://helse-bergen.no/en/avdelinger/kreftbehandling-og-medisinsk-fysikk/research-and-development/cyclome-part-b
Glad to hear! Thanks.
Pretty nice size really. Forty person unblinded study with moderate to severe ME/CFS.
Cyclophosphamide is an interesting drug from another point of view:
https://en.wikipedia.org/wiki/Cyclophosphamide
“It is taken by mouth or injection into a vein.”
And from one of the links JTHaugen provides:
“Each patient received six intravenous treatments four weeks apart, and follow-up for one year after treatment.”
So again we have a test with a drug supplied in IV-saline. Could this, just like the Rituximab study where both drug and placebo (IV-saline) provided remarkably good results, be another case of the IV-saline being at work? There is research showing good long term effects of using a number of single-shot IV-saline infusions with a period between each. Effects last long after the last dose has been given.
Cyclophosphamide itself can be taken through IV and orally. Side effects and doses may vary between methods, but it could provide options to better seperate the effects of Cyclophosphamide itself, the placebo effect and IV-saline.
If much of the effects were due to IV-saline this would be great news, as it’s far less toxic then Cyclophosphamide and only “six intravenous treatments four weeks apart” may yield a noticable improvement in ME.
Where is the research which suggests that one or a few saline solutions can make a long term difference. Dr. Bell pioneered the use of saline in ME/CFS and he does offer one case of a bed bound patient who recovered and didn’t need the IV’s anymore but that took a year of saline and a PICT line.
The POTS study does suggest that IV saline can over a years time or so allow a significant portion of POTS patietns to recovery but patients in that study were young women: really a very different cohort from that seen in ME/CFS. The authors believed the saline allowed them to exercise, overcome their deconditioning and eventually recover. People with POTS, however, seem to do much better with exercise than people with ME/CFS. Still it was a pretty amazing result.
https://www.healthrising.org/blog/2017/04/15/saline-pots-chronic-fatigue-syndrome/
Dr Bell – who would, one would think, know – has never suggested that he’s regularly seen recovery of ME/CFS from saline or that it’s effects trend linger.
There is, however, an oral rehydration solution study going on in ME/CFS. Medow thinks ORS may be as effective as saline. It will be interesting to see what comes out of it.
https://projectreporter.nih.gov/project_info_description.cfm?aid=9207020&icde=44689257&ddparam=&ddvalue=&ddsub=&cr=6&csb=default&cs=ASC&pball=
My bad. I looked up and now remember my memory was juggled.
When I learned about the Australian study you linked I did think “and as many of ME patients have POTS it may help a significant subgroup of ME patients”.
When I learned about the Rituximab study seeing that a significant subgroup on the “placebo” did improve beyond a normal placebo reaction I thought it might have been overlapping a lot with the POTS/ME group.
Later on somehow these conditions fell out of memory :-). Still, as you commented too, having such huge placebo effect where other research has found far less placebo effect in ME does raise questions.
The group of patients was indeed quite different. Many ME patients wont be able to exercise for some time as much as these test subjects did. But there is another take on it:
IV-saline temporary (quite likely) improves cerebral blood flow. That’s the ME/brain equivalent of having the ability to exercise more.
Also, when taking some migraine drugs (changing vagus nerve functioning IMO) improving total body blood flow, I felt a sort of “rush” or pressure on my head. Thoughts became quite a lot clearer and I could do more mentally. I had to abandon the drug however as my legs became much worse quickly and this side effect did not disappear but got worse. I think I was about a small month on the drug.
Interestingly enough, both effects remained for far much more then a month after being of the drug: improved brain functioning and (much) deteriorated leg functioning. Over time I could slowly improve both so my brain (until now, let’s hope it never does) never returned to that very low functional state it was before. So one could say that I was possibly helped in getting part of my brain back by a drug that temporarily improved blood flow.
http://ether.stanford.edu/library/neuroanesthesia/Journal%20Articles/hypertonic%20saline.pdf contains a nice overview of effects of (hypertonic) IV-saline on CBF pressure and also lists mechanisms of action and adverse effects.
Seems like single shot infusions can *temporary* decrease (rather then a more expected increase) spinal fluid pressure, decrease brain inflammation, increase brain perfusion and cardiac output at the same time. There are risks on using IV-saline noted however and more importantly in ME: some of the mechanisms of action require a healthy BBB.
When correctly applied it *could* hence yield a “short lasting moderate break” to the ME brain. The main mechanism described is transient in nature, so using IV-saline too often or continuously would not have this effect and have more downsides.
Don’t forget IvIG.
Would IvIG treatment be another treatment preferably done with the active component provided via IV-saline by regular single shot doses with periods in between them?
Well speaking from experience. L-methyl folate helped my OCD tremendously when nothing else did but curiously it gave me energy and I can go to church regularly. iI was put on ivig for widespread clincal encephalitis and the only thing it helped was pots. Ketamine was awful but it cured my depression did not help fatigue or OCD. I’ve lost 40lbs myself but my doctors talked about metformin before I did this; I may ask them about it for ME and FM.
Christiana, can you share your Doctor? It seems they have lots of treatments available. I would like to try them! Thanks!
The CFS drug research seems very scatter gun. But I guess a little bit of scatter gun research is better than none…
I appreciate the newsletters, but I must have missed some.
My neurologist (back in 2007) put me on Cymbalta (patent expired now), which I am still taking. One doctor got me to try Savelle (with disastrous results-did not know or tell me about quitting it cold-turkey!) So I got back on Cymbalta/Duloxetin….I would like to try Lyrica; but haven’t found a doctor that understands Fibro or ME/CFS, since I moved to a new town 2 years ago.
My question is how did/does Cymbalta fit into this….I noticed it was not listed.
My pain is rarely noticeable, and it does help me sleep.
Thanks!
Congratulations! I don’t know of any Cymbalta studies going on but congratulations on responding so well to it. I think about 30% of FM patients do – or something like that.
Hello Cort.
Amazing summary! Thank you so much for keeping on top of it all.
Do you know if Flexeril can be taken with LDN? I am tolerating LDN with some success, but not in the sleep department. It would be wonderful to have a new option in the future for restorative sleep, but would hate to find out there was a negative drug interaction with LDN. I know Flexeril is technically not a narcotic, but the investigating i have done puts it in the gray category of “muscle relaxers.” Any thoughts? Also looking forward to hearing more about Younger’s work on dextro-naltrexone. If that becomes available, with less side effects, many could benefit.
Keep fighting the good fight. Your coverage always brings fresh hope!
Thank you for the overview Cort!
Metformin and its link with AMPK is an interesting one. AMPK activation (and inhibition/de-activation) seems to tissue specific and therefore can be a doubke edged sword. Take for example alpha lipoic acid. It seems to reduce AMPK activity in the hypothalamus but increase AMPK activity in skeletal muscles.
I have not tried metformin as I do not have access to prescription medication for off label use. I did try alpha lipoic acid and whilst it cleared my thinking, it weighed me down to the point I felt as if I was continuously wading through water. If I understand the available literature correctly, Metformin seems to have an opposite effect on AMPK activity in the brain/muscles compared to lipoic acid. So if I were to try Metformin I’d expect it to improve muscle function but to also increase brain fog.
Another reason why I’m not trying metformin to improve muscle function is that I am getting good results with taking tyrosine/phenylalanine. Since I started supplementing with these amino acids my muscles are more relaxed at rest but fire quickly when needed. I also stopped taking lipoic acid (which I was using to combat brain fog) because I noticed I get similar effects in by using an hypertonic NaCl nasal spray. In contrast to lipoic acid, for me the nasal spray doesn’t lead to the ‘side effects’ of lipoic acid (feeling like I was wading through water all the time)
On a different topic: Thank you for the link to the study that compared ORS with saline. According to the outcomes of the study, ORS had a more positive effect than saline which I thought was quite interesting as this outcome may point to an electrolyte imbalance which may explain why the hypertonic NaCl nasal spray is helping me by not only clearing my sinuses but also my thinking. Two caveats though: The nasal spray is ‘alkaline buffered’ which means it potentially contains bicarbonate which can also be of influence. Also, I started using the hypertonic nasal spray to combat a cold. Did catching a cold help me feel better. Possibly….Not sure. All I know is that the cold is gone and I still feel so much better. Hopefully its lasts. Fingers and toes crossed.
At first I thought the amount of NaCl in a nasal spray is insignificant (when using it in “normal” amounts) compared to the total weight of NaCl in the body or in each meal. Therefore I assumed it’s mode of action should be:
* clearing sines and providing better breathing; better breathing is often a pro for ME patients.
* clearing sines reducing pressure to the brain and hence reduce brain spinal fluid pressure and brain compression a bit.
* clearing sines reducing their pressure on an artery feeding the brain a bit and hence improving blood flow.
But after reading http://ether.stanford.edu/library/neuroanesthesia/Journal%20Articles/hypertonic%20saline.pdf I combined this info with what I read some time ago:
* researchers discovered that the brain has, against prior believe, some sort of lymphatic system
* *IF* I recall correct, the nasal bridge somewhere near the sines would contain an “endpoint” of one of these lymphatic brain channels, dumping “waste” from the brain into the nasal channel.
* Using the same idea as stated in the linked paper, spraying that spot in the nasal channel with hypertonic NaCl *MIGHT* IMO create an osmotic gradient drawing more liquid out of the supposed lymphatic channel into the nasal channel.
It’s pure hypothetical and numbers need to be significant in order for it to have an impact, but it might support brain fluid drainage and cleansing. Long term hypertonic NaCl (overuse) has an impact on the nose cells however.
O wow, very interesting Dejurgen!
Apparently the ‘glymphatic system’ is currently a hot topic.: https://www.ncbi.nlm.nih.gov/m/pubmed/28862640/?i=3&from=/30362622/related
From a quick scan of a couple of articles, it looks like the brain has trouble clearing waste via the glymphatic system when the blood pressure is low or when sleep is disturbed.
Thank you for bringing this topic to my attention. I am now even more eager to learn the results of Dr. Bergquist’s ME/CFS Spinal Fluid metabolomics study once they become available.
Great write-up. Thanks Cort!!
Thanks 🙂
In mentioning energy draining illnesses, narcolepsy is never included. The main symptom of narcolepsy is day time fatigue as debilitating as chronic fatigue. Many narcoleptics are also bed bound, can’t work or function due to fatigue. Also narcoleptics can’t sleep at night, same symptom as me/chronic fatigue. My son was diagnosed as chronic fatigue at 14, then at 26 was changed to narcolepsy. Both illnesses have basically the same symptoms. Drug sensitive, severe pain, plus other symptoms. Do you think it’s possible that the drugs and studies noted will help narcolepsy as well as Parkinson’s and other energy draining illnesses? Stimulants aren’t of any use for many narcoleptics because they already have severe anxiety and stimulants increase it to the point of delusions and panic attacks. Any thoughts?