Is the tide turning a bit for ME/CFS?
Is the tide turning a bit? Could long COVID be starting to lift some chronic fatigue syndrome (ME/CFS) boats? That was certainly our hope. We hoped the appearance of millions of long-COVID long haulers would spark interest in the really long haulers – the people with ME/CFS who’ve been dealing with this disease for 5, 10, 20, 40, or more years. It only makes sense that a pandemic of epic proportions might be enough for researchers and institutions to take a new look at ME/CFS.
That does appear to be happening – at least for an ME/CFS researcher and a prominent ME/CFS clinic. Both are busier than ever.
First, though, a brief stop at some things that haven’t happened – not yet, anyway. If you’ve read my recent rants about the NIH you know what’s coming. I just can’t let go of it yet…
Big Miss!
What makes sense isn’t always what happens though. It was stunning to see, two years after long COVID came on the scene, a reduced lack of Institute support for the NIH ME/CFS research centers and no increase in funding.
Thus far, the NIH has missed a huge opportunity to cheaply and effectively study ME/CFS
That was peanuts, though, compared to what happened with the NIH’s congressionally funded long-COVID RECOVER project. The RECOVER project provided a golden opportunity to cheaply and easily bring ME/CFS into the research mainstream.
It seemed like a win-win situation. The NIH got the opportunity to live up to promises (“Watch us – we’re serious about ME/CFS now” – remember that?) in a cheap and effective manner. The hard work of the RECOVER project, after all, had been done: the protocols had been created and the researchers and clinics found. All the NIH needed to do was to insert 500 or so ME/CFS patients into its 40,000 people long-COVID study.
In one swoop, ME/CFS would have been embedded in a massive research network containing integrated databases and large, rigorously conceived studies – the kinds of studies this field has largely been missing for the past 30 years. The kinds of studies that don’t get dismissed, that aren’t too small, that don’t have methodological problems; in short, the kinds of foundational studies that can really move a field forward.
Dozens, if not hundreds, of researchers would have been exposed to ME/CFS. As the NIH uncovered similarities between ME/CFS and long COVID, treatment trials – a rarity for ME/CFS – would have been forthcoming. By itself, the RECOVER project could have turned our little niche field into a major research opportunity. With 1-2 or more million people with ME/CFS in the U.S. there are certainly plenty of people to study.
It was all there for the asking. All the NIH had to do was pony up a little money but that, astonishingly, was once again, a bridge too far.
We should note that the NIH has not had it easy with the RECOVER project. Even though (for it) it got the RECOVER network up and running in record time, it still managed to miss ALL the COVID peaks (ouch!) – thus losing its best chance to do what Congress wanted it to do – catch long COVID in the act. A year and a half later, it’s enrolled only a fraction of its estimated participants. Remarkably, only last week did it begin to provide links to some of the RECOVER research centers on its website. If I was Senator Tim Kaine – a long-COVID sufferer and supporter of the RECOVER initiative – I would not be pleased.
So the NIH has been pre-occupied for sure and it may change its tune in the future. I still find it hard to believe that when – I believe it’s a when not an if – that when the NIH or other research efforts start to unravel long COVID that it won’t finally step forward to extend a hand towards ME/CFS. The NIH is, after all, made up of humans, and morality – no matter how washed out morality can get in a big bureaucracy like the NIH – is still part of the human package.
The NIH’s unwillingness, thus far, to include ME/CFS in its RECOVER initiative, though means we’re largely back where we were – creating small, interesting studies that do move this field forward but can’t create the kind of “pop” needed to move this field forward quickly.
The NIH’s unwillingness to take advantage of the long-COVID opportunity to support ME/CFS aside, a wave – not a big one, for sure, maybe a 2-3 footer 🙂 maybe building – and that is good news.
Two important players in this small field – Dr. Benjamin Natelson and the Bateman Horne Center – are suddenly quite busy!
Dr. Benjamin Natelson’s ME/CFS Moment
After 2 decades of studying this disease, Dr. Benjamin Natelson is having an ME/CFS moment.
Dr. Benjamin Natelson has been getting after ME/CFS and fibromyalgia (FM) for a long time. A doctor, researcher, and author (“Your Symptoms are Real“), Natelson has been publishing in one form or another on ME/CFS for almost 20 years. Mt. Sinai’s entry for him states “he is the only neurologist on the East Coast expert in the diagnosis and care of patients with severe fatigue and/or body-wide pain for which there is no apparent medical explanation.”
Natelson’s had some dry spells but he has been able to get NIH grants fairly consistently. From 1995 to 2002, he ran one of three NIH-funded ME/CFS research centers. From 2010 to 2020, his NIH funding dried up a bit and he was able to score only three grants, but recently he’s been on a roll. Since 2021, he’s scored 3 NIH grants, has 5 NIH studies going, and is trying for two more: Natelson is clearly having an ME/CFS moment. If you watched his presentation at the recent NIH telebriefing, you could sense his excitement.
Please note that all these studies are open for enrollment, and the faster we get them filled, the more we will learn. Natelson is located in the Big Apple (New York). If you’re close by, please consider enrolling in one or more of them.
R21 Studies
Natelson currently has 3 smaller R2I (but still pretty darn big; i.e. $100K to $350K a year) grants going.
Cerebrospinal Proteome Spinal Fluid Study
Natelson is attempting to find our brains “John Hancock” i.e. it’s unique proteome signature
Natelson’s been wanting to do this study since he teamed up with Lyme expert Stephen Schutzer to show, in another NIH-funded grant, that the proteins in ME/CFS patients’ cerebrospinal fluid were different in people with Lyme disease. (That is certainly an intriguing fact as we move into a new era of post-infectious disease research.)
The Gist
- The National Institutes of Health (NIH) has thus far woofed on the easiest, cheapest, and most effective opportunity to study and understand ME/CFS – embedding people with ME/CFS in its huge RECOVER long COVID projection.
- The NIH’s neglect of ME/CFS is not new but long COVID is and there are signs that the long COVID “wave” may be finally starting to wash up on the ME/CFS field’s shores.
- Dr. Benjamin Natelson has been studying ME/CFS for many years but after quite a dry spell in the 2010s Natelson is now engaged in now less than 5 NIH-funded ME/CFS and long COVID studies and has applied for two more. They include brain imaging, exercise, sleep, mitochondrial supplementation and cerebral spinal fluid studies.
- One of those trials, though – ironically the easiest one which simply requires that a person nap in a rocking bed for a period of time during two afternoons – is in danger of not being finished because of lack of patient participation. Women who are not obese, are not on brain-altering drugs, and are not depressed can participate in the study which is taking place in New York City. (See the blog for details).
- Similarly, the Bateman Horne Center is often doing clinical trials – but almost always in fibromyalgia. At the present, though, it’s engaged in 4 ME/CFS and long COVID trials including a trial of the most exciting supplement to cross ME/CFS patients’ paths in quite some time – oxaloacetate, as well as the Pridgen protocol, endothelial cell and a mystery study (!)
- The results from a Freedom of Information Action request to determine how many researchers are applying for ME/CFS grants should tell us if interest in ME/CFS has indeed begun to dramatically increase.
Dr. Natelson said he was particularly excited by this study, which was ready to go the moment it got funding. They already have the samples, as well as “leading pioneers in mass spectrometry and proteomics, experts in statistics and bioinformatics, experience with the methods”.
This is a one-year grant and it looks like it will actually get done in one year. A successful outcome and they’ll apply for a big RO1 grant application, which I imagine the NIH would find very hard to turn down.
- If you experience long COVID or ME/CFS, or are a healthy individual, and are interested in participating in this study, please call 212-844-6665 or sign up at https://forms.gle/1uW36fMfjrFuNATX8, or email them at painandfatigue@mountsinai.org
Structural and Metabolic Neuroimaging of ME/CFS Occurring With and Without COVID-19 Infection
No subject may be more important in ME/CFS than blood flows – and if that’s true, no place may be more important to investigate them than the brain. If you can’t get good flows to the big computer in the skull, it’s likely nothing is going to work well.
This study is using advanced 7 Tesla MRI neuroimaging techniques to examine the structure of the cerebrum and a most interesting part of the brain – the brainstem – a possible center of autonomic nervous system dysfunction. The study is also assessing oxygen utilization; i.e. energy production in the brain overall in both people with ME/CFS and people with long COVID. (Take that, RECOVER program…).
- Contact the Pain and Fatigue Study Center at Mt. Sinai, New York at 212-844-6665 or painandfatigue@mountsinai.org for more information on this study.
Rock a Bye Baby Nap Study On the Brink!
Danger Will Robinson! (:)) The rocking bed study is in danger of not being completed. (Image from Wikimedia Commons).
In what’s surely the most fun sleep study ever devised, Natelson is trying to give people with ME/CFS something many of us crave – deep sleep! Swiss sleep researchers devised something called a “rocking bed” that rocks back and forth like a baby cradle that helps you get to sleep more quickly and increases the time you spend in deep sleep. It appears that interactions between the amygdala, hypothalamus, and brainstem – three potentially crucial parts of ME/CFS patients’ brains – may be involved.
This study is in danger of not being completed! I know of two excellent studies – a Viagra study that sought to increase blood flows to the brain ME/CFS and an iron infusion study in POTS – that never made it to the finish line apparently because they couldn’t recruit enough patients. One thing we DON”T want is for the NIH to give us funding that gets wasted – particularly in a study that is so easy. All you do is take a nap in the rocking bed for two days
Dr. Natelson said that COVID was the first disruptor, but lately, the study criteria have been getting in the way. This study needs non-obese women who are not on brain-active meds and do not have active depression.
Beds, by the way, can be retrofitted to rock. 🙂
If you can get to New York to take naps for two days, contact Benjamin Natelson at (212) 844-6665 or email his team at painandfatigue@mountsinai.org
The RO1 Study
A Cardiovascular Analysis of Post-exertional Malaise
Finally, there’s the big study – the multimillion-dollar, 4-year RO1 study on exercise in ME/CFS. Natelson and Cook threw a bit of a twist into our understanding of what happens during exercise with a big 2-day exercise study which suggested that it wasn’t energy production (VO2 max at anaerobic threshold) that was inhibited in ME/CFS but that something strange was happening with the breathing.
That study – which Health Rising will cover in a future blog – found that oxygen consumption at the ventilatory threshold (VO2VT) was significantly reduced. Importantly, the study found that people with ME/CFS still entered into anaerobic energy production early but at a different physiological point.
Natelson believes that some deep breathing during exercise may be reducing blood volume and exercise capacity. They’ll be closely measuring blood volume levels and replenishing the blood volume between exercise bouts, and measuring how much blood the heart is pumping out, as well as taking other CPET measures in 2-day exercise tests in 120 people.
- Contact painandfatigue@mountsinai.org for more.
The Oxaloacetate Trial
Natelson will do brain imaging to determine if oxaloacetate increases glutathione levels
Natelson apparently has room for more as he’s also recently got funded to do an oxaloacetate trial. (The trial has not started yet it’s in the last stages of getting IRB approval) Oxaloaceta.te is surely the most exciting supplement to come across ME/CFS patients in years. The sterling results this mitochondrial supplement produced in his ME/CFS patients got Dr. David Kaufman – who isn’t used to such things happening in ME/CFS – so excited that he even created his own small clinical trial.
One ME/CFS oxaloacetate trial is already underway at the BHC (see below), but this one would be more extensive – involving brain scans of ME/CFS patients before and 6 weeks after taking the oxaloacetate twice daily. Since oxaloacetate appears to be able to raise brain glutathione levels, and Shungu and Natelson have definitively demonstrated low brain glutathione levels are found in ME/CFS, Natelson is going to see if oxaloacetate is going to raise the levels of that important antioxidant in the brain.
More…
You thought that was all? Dr. Natelson is also applying to add long COVID patients to the ME/CFS exercise study and to use brain scans in acute COVID patients to try and figure out how long COVID begins. He is having a moment indeed.
The Busy, Busy Bateman Horne Center
The Bateman Horne Center is busy – this time with ME/CFS and long COVID studies
The Bateman Horne Center (BHC) in Salt Lake City, Utah is no stranger to clinical trials – it’s doing them much of the time, but they’re almost always done in fibromyalgia. Things have changed lately, though. Noting “the growing awareness the pandemic has caused”, the BHC recently reported they’re currently engaged in no less than four ME/CFS and long-COVID clinical trials and research studies.
The RESTORE ME Oxaloacetate Trial
A long COVID oxaloacetate trial quickly got underway, but the BHC reported that Terra Biologicals is also funding a 90-day ME/CFS trial. I can’t remember a possible treatment moving so quickly into treatment trials in ME/CFS.
There’s one in-person visit to the Bateman Horne Center for a physical exam, assessments, blood collection, and to be fitted with a device to measure daily steps and upright position. In a nice touch, the people getting the placebo will receive a 90-day trial of oxaloacetate. Each in-house visit also garners a $50 gift certificate.
- Email research@batemanhornecenter.org or call (801) 532-8311 if you’re interested.
Pridgen Goes After Long COVID
Dr. Pridgen’s large 2-viral treatment study for fibromyalgia is wrapping up shortly, but confident as always, he’s already moving on to long COVID. The BHC is conducting the Virios pilot trial with a twist; instead of Famvir, the lead antiviral will be Valtrex (valacyclovir). (Celebrex remains the other drug.)
This 60-person, 14-week trial requires several in-person visits to the BHC. This trial was slated to begin in May. It’s either filled or has not started enrolling yet.
The Blood Vessels: “The Endothelial Function and Upright Activity in ME/CFS and Long COVID” Study
Once again – blood flows. With the Visser team finding reduced blood flows to the brain in everyone with ME/CFS, and David Systrom’s finding suggesting that blood flows are either being diverted from the muscles or not being used by them, and David Patterson focused on the blood vessels in long COVID – blood flows are center stage.
This nice big 100-person study is going to compare blood flows between the long, long haulers in ME/CFS and the newer long haulers – people with long COVID. It’s going to use something called the EndoPAT device to assess endothelial function, and the BHC’s unique ankle device to measure “up-time”, and will include cognitive testing and a blood draw. After the initial 2-hour visit, the rest of the 7-day study will be done at home. Each participant will receive $50.
- Email the BHC at research@batemanhornecenter.org or call (801) 532-8311 for more.
The Mystery Long-COVID Trial
Another clinical trial should begin recruiting soon. Watch the BHC’s Research Studies page or click their subscribe button on the top of their website to subscribe to their newsletter.
Signs of life in the ME/CFS field as one researcher gets really, really busy and a clinic embarks on new ME/CFS and long COVID studies and trials.
Conclusion
The NIH missed a big opportunity to vault the ME/CFS field forward but with a longtime ME/CFS researcher and an ME/CFS clinic having quite a moment it may be that a long COVID wave is starting to lift some ME/CFS boats.
We’ll find out how broad that wave is when the results from a Freedom of Information Act (FOIA) which requested how many grant applications the ME/CFS program at the NIH has received over the past two years come back.
Are any of these looking at long Lyme?
No. Health Rising will provide an easy way, though, to find long Lyme clinical trials shortly.
Hi Cort I think oxoalcetic acid is derived from malic acid( fruits) I take malic acid and it surely helps with the weakness.
Anyone counting on the NIH to be serious about curing CFS/ME will be deeply disappointed. It’s been 30+ years and counting and the NIH still does not care about the millions of people in the U.S. who’s lives have been destroyed by CFS/ME.
While I truly appreciate the info here, and feel enormously grateful to the small group of brilliant minds that have been willing to go to bat for ME / FMS, etc.(!!!), I’ve been way-too-sick with severe ME+FMS for way-too-long to get my hopes up that the NIH will EVER allow any meaningful funding. To legitimize this affects-way-more-women-than-men disease, especially with the abundant evidence of the NIH’s consistently blatant disregard toward this cruel condition would, frankly, shock me. I would love to be shocked.
The rocking bed study fascinates me and here’s why – since I’ve had cfs, and whenever I’ve been on a swing (the taller, the better), I’ve had a feeling of joy or euphoria while swinging. And I believed it had something to do with the brain because of the spontaneous feelings of joy. I also wonder if swinging does something to the gut? I’d get a wonderful feeling in the pit of my stomach while swinging – maybe it’s that brain/gut connection. If you haven’t tried swinging, give it a go!
The rocking bed study is interesting indeed. On a cruise my sleep is fantastic: the boat “rolls” always a bit. The same mattress ashore doesn’t do the job.
The only way I feel relaxed enough to fall asleep is if I gently rock myself to sleep. I lay on my side and lightly rock back and forth. I also put Obsolete Oddity on YT on and it’s like listening to calming vintage wierd and true bedtime stories while I rock myself to sleep. It’s strange that rocking really helps.
Three people who find that rocking motions during sleep help. I hope this study can get done. A positive result could lead a bigger study and potentially better sleep.
How interesting.. I have always with tiny movements rocked myself to settle down to go to sleep. I thought it was some remote remembering of my mother rocking me as a baby. How strange and interesting. An important note. I have been suffering with FM for over 35 years and when I got the 2nd covid shot it sent me into a hell of pain and crippling that I had not experienced. Unbelievable, here I am . My doctor is writing me a scrip for LDN. Low dose naltrexone . Supposed to really help with the pain caused by all these syndromes.( Research it please). I hope so my life is at a close 0. so tired and painful. If I exercise there is a price to be paid. I still look up for hope, here I am.
LDN is a well-known pain reliever in these diseases! Take it slow and easy and check out this resource: https://www.bing.com/search?q=low+dose+naltrexone+for+fibromyalgia&cvid=30d586070570409aaf0d90121ef6a532&aqs=edge.7.69i57j0l7j69i60.8548j0j1&pglt=163&PC=W129&first=11&FORM=PERE
I participated in Dr Natelson’s many CFS research projects at UMDNJ Newark in the 1990’s. I stopped seeing him when he moved to NYC. I will now be contacting him because I have recently been diagnosed with Autonomic Dysfunction. Long covid, breathing problems w any exertion, sweating, digestive issues, use a BIPAP etc . I support joining in any research, but my hesitation is with more brain scans. Is there any info regarding the cumulative effects of brain imaging? Thank you, Judith
It is too bad that water beds are not around now. When I had one I found the comfort so amazing that I fell asleep quickly and felt great in the morning. I wish I could have one now. It felt as though I was floating.
How would one do an oxaloacetate trial for themselves if it is available? Thanks
I believe Cort covered supplementing with Oxaloacetate in his Mitochondrial support series, (No. 4 or 5 ?) check out the ‘Comments’ for information on supplies and types. Can’t offer more, my Bookmarks all went with my laptop meltdown. Accessing my email from a friends’ laptop.
Don’t buy oxaloacetate off Amazon. Buy it from the website in the comments section of Cort’s post. Each capsule has a lot more oxaloacetate than the ones on Amazon.
I would absolutely love to do clinical trials. Not just these, but I have also seen ones for ketamine for chronic pain, etc. Unfortunately, I haven’t found any that are near me. I’m in Minnesota & due to illnesses & finances, I’m unable to travel across the country. I’ve been to Mayo Clinic & they have no interest in fibro or ME/CFS.
Mayo has a lot to make up for that’s for sure. The list of dissatisfied patients that have seen them is long. MEAction recently met with them at their Rochester site and reported that they were met with “receptiveness and enthusiasm” – so maybe things are changing. Let’s hope – they play a big role in medicine in the U.S.
https://www.meaction.net/2022/05/17/exciting-news-about-mayo-clinic/
I went to Dr. Natelson early on in my diagnosis phase. I went to him for a 2nd opinion and for close to $1000 (no insurance) he treated me like garbage. And when I told him I was diagnosed already, he actually “we’ll see about that.” And the kicker was at the end, he asked me to “jump up” on his DESK so he could palpate my glands etc. Not a nice man, judgemental and DOES NOT BELIEVE YOU! I wouldn’t help him if he was the last doctor on the planet. Worthless.
I’m sorry about your experience. My experience is that the vast majority of doctors do not take insurance now. (I just got hit with a $1200 bill from a doctor I saw two years ago (lol)). Last year I got hit with a $7000 bill for a short trip to the emergency room. It’s brutal
In any case, this blog isn’t about Dr. Natelson’s pluses or minuses as a doctor. It’s about his ME/CFS research. Besides all his other ME/CFS research, with his oxalacetate study, his attempts to get a vagus nerve stimulation study going and his rocking bed study, he’s been quite creative in his attempts to validate some interesting treatment options for people with this disease.
Cort,
Wow – that is rough with the bills. Medical insurance companies – I’ve had it explained to me before that they do not do anything for anyone but themselves (not the hospitals, not the doctors, not the patients).
As far as vagus nerve stimulation goes, I recently picked up a GammaCore Sapphire. A pain doctor recommended it for parasympathetic stimulation post sympathetic nerve chain block (left and right, C4/C6 – pioneered for PTSD I believe). It has to be prescribed, and it is traditionally used for migraine and cluster headaches.
My experience with the sympathetic nerve chain block is that it took a while to establish a symptomatic impact (approximately six weeks in my case – and it isn’t profound, but anything helps). The physicians and GammaCore folk talk about the same timeframe in regards to vagus nerve stimulation. I’ve no idea if it is going to work or not.
Overall, these things are less than USD$4 a day, if you go with the long term option, and less than USD$5 a day while trialling on a shorter timeframe. I don’t believe there are any known side effects. So if you have the money, this is the sort of thing I don’t wait for the studies on. I’m quite happy to do an n = 1.
By contrast, if I went it alone and stuck a bunch of hydraulic actuators under the bed, I think the better half might have something to say about it.
Je suis vraiment désolée pour vous tous que l’hôpital soit si cher aux USA.
EM/SFC depuis 18 ans, avec les 3 dernières années alitée la plupart du temps, mon spécialiste m’a prescrit des antihistaminiques, non pour les allergies, mais pour calmer le système nerveux. Je prend 500 mg de quercétine à midi et 5mg d’AERUS le soir avec un peu de magnésium. J’ai aussi vu un ostéopathe qui a travaillé sur le système nerveux et sur les viscères. et c’est à ce moment là que j’ai commencé à me sentir beaucoup mieux au quotidien. Il y a eu un déclic chez l’ostéopathe, je ne sais pas comment l’expliquer, mais depuis Je suis passée de EM/SFC sévère à léger. Cela fait maintenant un mois que je l’ai vu et pour l’instant les effets sont toujours positifs.
J’ai fait testé Lyme et coinfections en Allemagne, et c’est revenu négatif ,sauf le Bornavirus qui est positif. Je n’avais jamais entendu parlé de la maladie de Borna et il n’y a pas beaucoup d’info sur internet à part le Bornavirus sur les animaux. Comme quoi, il y a toute sorte de virus et pas que les plus connu, tel que l’ EBV (que j’ai aussi), etc….
Bund gibt 5 Millionen Euro fur Therapiestudien frei
(…) Mit dem Geld soll eine Nationale Klinische Studien-Gruppe (NKSG PCS/CFS)
aufgebaut und gefordert werden, um zeitnah Medikamente und
Behandlungsoptionen fur das Post-COVID-Syndrom und ME/CFS zu prufen. Die
Therapiestudien sollen multizentrisch (an mehreren Kliniken) unter der
Leitung der Charite-Universitatsmedizin Berlin (Prof. Scheibenbogen)
durchgefuhrt werden. Partnerinnen des Projekts sind derzeit vier
Universitatskliniken in Deutschland (Berlin, Munchen, Erlangen und
Lubeck) (…).
https://www.mecfs.de/5-millionen-euro-fuer-therapieforschung-durch-den-bund/
Because doctors and pharmacists are studying CFS/ME to fix computer malfunctions, CFS/ME/Long COVID will have neither a cause nor a cure. CFS/ME/Long COVID can be easily resolved by approaching the cause of the failure of the brain’s regulatory function and treatment for the failure. CFS is a brain dysfunction caused by electromagnetic interference, and ME is a synergistic effect of uric acid in CFS disease. Long COVID is a case in which a person with electromagnetic interference that is weaker than CFS is infected with Corona. This is a case in which the waste products from the war between the virus and the immune system due to infection worsened the electromagnetic interference and reached the CFS level.
Treatment involves removing the cause of brain electrical failure and tuning the brain-body control system.
ME is not CFS. ME is an enterovirus injury of the Central Nervous System as proven by Dr Byron Hyde (see his book at nightingalefoundation.ca). Dr Hyde was one of only two physicians to address our House of Commons recently in the UK about ME and CFS. CFS is a disorder of central cholinergic transmission https://www.tandfonline.com/doi/abs/10.1300/J092v03n01_02
Chaudhuri, Abhijit & Majeed, T. & Dinan, Timothy & Behan, Peter. (2011). Chronic Fatigue SyndromeA Disorder of Central Cholinergic Transmission. J Chronic Fatigue Syndrome. 3. 3-16. 10.1300/J092v03n01_02. The symptoms of CFS and the neurobehavioral syndrome of low-dose chronic organophosphate exposure are identical, and in this study we have shown that the pathogenesis involves upregulation of post-synaptic cholinergic receptors. The involvement of acetycholine helps to explain the symptoms of fatigue, sleep disorder, and memory and concentration abnormalities and may also be involved in abnormal sweating attacks and hypotension on table- tilting. As already outlined, there is, however, evidence of peripheral involvement in CFS, and it is not inconceivable that these peripheral abnormalities may also in some way reflect the abnormal central cholinergic involvement.
I sent an email to the address provided for the Horne Bateman studies with no response. Was going to call them, but when I went back to their website, they are currently (temporarily) only seeing patients from Utah and only those with the disease 4 years or less. Otherwise, I would’ve gladly gotten myself there. I currently live in WV and have never seen a doctor for my CFS/ME, which I’ve had for 28 years+. I gave up researching years ago because it was getting depressing. I’m new to Health Rising’s website and feel EXTREMELY overwhelmed (exhausted) from all the great information. I keep reading that people have gotten help from Cort, but I have no idea where to start. Does anyone have suggestions? I would love a graph (pictures!) that say, “Start Here”…. with some “If, then…” to follow. I don’t know how you do what you do, Cort. Thank you for being an informative voice in the abyss.
What Oxaloacetate supplement do people recommend if I want to try it at home?
Cort – I’d love to see you do an “informal” poll of the experience of people with preexisting CFS/ME, who then get Covid? Do the CFS/ME symptoms stay the same, or get worse? Doctors have no information. I’ve had a couple suggest that since I already have CFS, I’ll be fine if I get Covid (?!?). I’m nervous that if I got it, my CFS would be much worse. Given the lack of basic research, the best info we can get is via community sharing.
Because CFS/ME is a disease beyond the knowledge of a doctor or pharmacist, the cause is unknown and there is no cure. CFS/ME is a failure in the brain’s production and transmission of electrical brain signals. It can be easily fixed by changing the living environment and using Brain-Body tuning.