Geoff’s Narration
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There are recovery/recovering stories and then there are recovery/recovering stories. Martin didn’t recover – he reported that he remitted – but in such a strange way. In fact, I gaped at his story when it came in. What to do with this? Its strangeness, however, spoke for its authenticity. No one, I thought, could ever make this up.
It was a paradox…How could Martin in the midst of the worst sleep deprivation in his life suddenly dramatically improve?
Plus, however, unlikely the outcome, I felt that anyone who gets better after being so ill deserves a chance to tell his/her story and perhaps get some clues as to what happened. To me, Martin’s story brings to mind chaos theory which describes how small changes can ripple through complex systems resulting in unforeseen outcomes and remission was unforeseen indeed. Something happened – but what?
Martin reported that his spontaneous remission came at his very lowest point – at a point where he was wondering if this was finally it for him. He had been ill with ME/CFS for ten years and had been bedbound for the last three. Before he came down with ME/CFS, he’d been diagnosed with EBV reactivation, Lyme Disease, and food poisoning.
The medications that helped him such as Lyrica, benzodiazepines, and Tianeptine worked on the brain. His symptoms, on the other hand, have always seemed overwhelmingly physical. Martin reported that he was not depressed or have anxiety, and doesn’t experience brain fog but does experience massive fatigue, hard and long painful periods of postexertional malaise, burning sensations mostly on his back and legs, and he can’t tolerate heat or cold – both of which trigger PEM, insomnia, muscle pain. His blood tests do not indicate that he has an autoimmune problem.
Two anti-psychotics (quetiapine and prosulpine) lead to a profound deterioration of his sleep. Now he was regularly getting 1-2 and sometimes 3 hours of sleep a night. After stopping the drugs the sleep problems persisted for several weeks.
Not surprisingly, his symptoms exploded. The slightest exertion would bring on severe muscle pain and burning sensations and his already enormous fatigue worsened dramatically! As the months went on he thought he was reaching his end. Poor sleep is associated with an increased risk of many chronic illnesses and Martin’s immune and nervous systems were surely getting clobbered.
Sleep deprivation studies never match the amount of sleep deprivation that Martin experienced – that would be too dangerous. Short term sleep deprivation has been associated with an inability to detoxify the brain, form memories, emotional lability, reduced energy production, neuroinflammation, increased inflammation in the body, reduced testosterone, altered gut microbiome, reduced resistance to infections… the list goes on and on.
interestingly sleep deprivation can increase cortisol, serotonin, tryptophan, and taurine levels, though, and is associated with the “anti-depressive” effect that can occur. Sleep deprivation also increases the activity of the thyroid hormone – and increased thyroid hormone levels could be causing sleep deprivation. (A 1991 article focused on using sleep deprivation therapy in depression (!)). A mouse model found that sleep deprivation increased levels of the feel-good chemical GABA. Sleep deprivation is also associated with increased levels of adenosine which inhibits neural activity – particularly of the cholinergic neurons. It results in increased synthesis of the neurosteroid allopregnanolone in the prefrontal cortex. increased production of oleoylethanolamide in the cerebral spinal fluid may have neuroprotective and neurotrophic effects. Immune cells called granulocytes increase. Epigenetic changes; i.e. changes to our gene expression also occur.
Then suddenly, after getting 2 hours sleep one night, Martin reported that he experienced a sensation of energy such as he had not felt in years. Despite sleeping only 3 hours the next night the euphoric feeling of energy happened again. The next day his PEM disappeared and he got out of bed and was able to walk on his own. Over the next couple of weeks, he reported he was able to sit at meals, drive a car, visit friends, and ride an electric bike without suffering PEM for the first time in years.
The fact that his sleep only slowly but surely improved indicated that it wasn’t that he was getting better sleep – something else was going on. Plus, those few nights he didn’t sleep well were followed by another wave of energy. He said he and his family were overjoyed at this strange occurrence. His improvement was so rapid that he’s convinced that there’s nothing inherently permanent about his ME/CFS. His remission lasted about 3 months and then his symptoms started to return.
His goal is to get back to his state of remission – without having to go through a severe (and uncertain) path of severe sleep deprivation. He cannot trace his remission to anything he was taking or anything different he was doing – it just happened. The question is what could have happened to reset his system and allow him to improve so much for a while?
Martin’s thoughts include
- a change in brain chemistry (as if the brain stops sending faulty signals to the nervous system, which causes a cascade of symptoms)
- immune system suppression (another idea, but in his case he tried some immune suppressants without success in past (Rapamycin, Methylprednisolone)
- change in hormones (tests never indicated a hormonal imbalance, though)
Martin’s story obviously does not provide a template for recovery – no one would ever try to duplicate what Martin reports happened to him. In the end, there is nothing to do with his story except to wonder at it and try to explain it and it’s being presented in the hopes that someone has an idea. If anyone does or has had a similar experience please let him know in the comments below.
A spinal CSF leak could seal and then reopen. I went from bedbound to immediately able to walk with my blood patch but they can seal on their own in some cases. And with the physical issues, I would look into spinal causes and spinal leaks.
Alternately, if his intracranial pressure was exceedingly high, he could have opened a leak and reduced pressure then it began to seal again. I have a set of questions on pressureresources.com that might be helpful.
Melissa, you are on to something here. At the very least, this should definitely be investigated! I have my own theories, which relate to the neurotransmitters
Intracranial pressure can affect neurotransmitters so it’s not necessarily either/or. High pressure and leaks may be mechanical but their effect on the brain can lead to issues with the function and processes of its parts.
Or grew a collateral due to increased pressure which would also explain why he’s feeling symptoms again.
what does ‘grow a collateral’ mean?
Hey Sunie. Grown a collateral vein to deal with high intracranial pressure . Many leakers are are being diagnosed with some sort of venous compression syndrome such as Jugular vein compression. If a vein is compressed enough, the pressure causes another vein to branch out and grow. I hope that makes sense!
thank you
After a procedure where I needed nitrous oxide for pain I suddenly found that I felt really well . It lasted for about 12 days but because I hadn’t been well for 7 yrs I didn’t push myself and kept pacing carefully in case I relapsed.
After 12 days I slowly went back to where I had been( moderate m.e.) and I mentioned it to my GP who was not in the least bit interested in following it up. Very interesting though and I think its worth looking into. No-one else does sadly.
Hilda,
thank you for this. I am going to respond to you as well as some others’ comments above.
My main message to you is a suggestion or question: In chemistry, altered compounds are given names like ferrous oxide and ferric oxide. It is about the strength and orientation of net charge (+ / -) “ous” and “ic”.
You were given NitrOUS Oxide and I am asking whether it would be much of a challenge for that to be converted to NitrIC Oxide.
Could this have been a band-aid solution??
In my estimation, after 4 years of reading and synthesizing/testing theories,
I see CFS like this:
There is vascular damage plus brain inflammation. Most likely the BBB tight junction cells have loosened, allowing the brain inflam…
The vessels do not respond enough to the heart’s systolic and diastolic needs. The key lack or damage, in my mind, is dysfunction of a7 nACHRs (alpha 7 nicotinic Acetylcholine receptors) meaning that they do not properly produce Nitric Oxide, the main vasodilator in the Renin-Angiotensin-Aldosterone System.
Therefore, the diastolic pressure is too high, RESISTING increased blood volume to muscles and brain.
At this point you are left with a “supply chain issue”. You start exerting aerobically, but cells have insulin resistance. So the cells quickly run out of glucose, and the exertion requires more oxygen than can squeeze through undilated vessels. Hence anaerobic ATP production– and not much, either.
I have previously commented that I believe Rob Phair’s Itaconate Shunt Hypothesis to be involved, and that the phenomenon of Ischemic Cascade occurs. I blame I.S. for the onset of PEM. The muscle and brain tissues have suffered ischemia when they REQUIRED increased perfusion. The ensuing cascade delivers too much Glutamate (excitotoxicity) possibly because the cell is failing, and possibly to help it if it has resorted to GABA Shunt: turning protein into maybe 1 ATP. As the cell flails under this condition, it becomes permeable, allowing in extra calcium, and a cyclical reaction begins as MORE glutamate is provided outside the cell to rid the calcium…so… PEM…which which may even go as far as cell death. If cell death happens to one cell, the glutamate may be spilled around adjacent cells and they too may go through the Ischemic Cascade.
But HERE IS WHAT IS EXCITING !
In the past 2 weeks I learned 2 excellent things:
1. a7 nAChRs are used for BARORECEPTION in the vessels– This means that when the heart pumps out, the receptors feel pressure and produce Nitric Oxide to dilate themselves. That is normal.
I suggest that this is the PRINCIPAL FAILURE in CFS.
And they should then sense the diastolic phase and stop producing Nitric Oxide to allow them to reconstrict, in response to Angiotensin.
But I believe that even serious influenza infections damaged the vessel endothelial cells (and organs) in CFS and I believe that there has been such REPLACEMENT (remodelling) of killed elastic endothelial cells with more collagenic (stiffer) cells, plus calcium patching etc etc that the vessels are not acting as a systemic unit anymore. They dont dilate enough. There are stiffer as a whole. I retrofitted those FACTS about Covid starving the a7 nAChRs when they block the ACE2 receptors, since in Influenzas the viruses block Sialic Acid receptors– who also are systemic / ubiquitous, like the ACE2s are. S.A. receptors are ubiquitous in vessels as well as in organs.
2. The PURPOSE, or at least 1 feature of Itaconate shunt is the REASON for sequestering ATPs away: to use them to make more Innate Immune System cytokines!
So, again: Rob Phair’s question: The Innate Immune System gets stuck in the ON position (of using ATP to make cytokines) but WHY? does it stay stuck.
Perhaps the reason is that
a) much remedial action is first needed (intervention) to repair/clean the vessel endothelial surfaces
and
b) a dormant previous virus infection such as EBV or even Herpes 1 or 2 is often reactivated.
oops.
Did I say *2 excellent things?
I meant THREE excellent things!
3. A Dr. Gundry has researched and proven that we produce less and less nitric oxide as we age, but that there is nutrition that will INCREASE our production.
So EVERYONE run out (slowly) to buy (Oasis Antioxia) juice, or better fresher fruit-sources of polyphenols like dark mulberries, blueberries, pomegranate,
plus
unprocessed coconut oil which is the highest source polyphenols.
Lastly we need L-Citrulline which is named after the watermelon (in latin)
in order for our prematurely aged vessels to convert the polyphenols to Nitic Oxide.
This would be the intervention.
This is a very good working theory.
I think you may be into a winner here.
Blueberry and pomegranate works well for me.
Cacoa powder has been a game changer so far. I felt like having vosoconstrictio. Everywhere, to dangerous levels, to a fifty percent improvement.
I’m still pretty sick but it’s made a difference.
Ultimately, would stem cell therapy help with the aged vessels?
Thank you Olver.
In response,
first: I am only a lay-person, not having any medical training.
I read *a little* about stem cell therapy.
It seems logical that it is hopeful for this reason:
Enfothelial cells are not replaced by their likes. Endothelial cell creation only occurs when new vasculature is created. Mostly our bodies dont do that-we have enough. However, cancer cells send out signals for vasculature to be built toward them since we are supposed to have roughly 1 Trillion cells as humans, but not 1 trillion twenty five, 30…50… if you know what I mean. Usually we do 1:1 cell replacement. But gray brain matter is not replaced and endo cells get a non-endo subsitution of a stiffer collagenic cell.
So, as in cancer trearment’s stem cell introduction into the marrow, I presume that VEGF (vascular endothelial growth factor) could be co-opted to generate new vessels.
I have not done any thinking or reading about stem cells with regard to atherosclerosis– which seems to be what CFS is about after its trigger occurs.
So I am not a good person to ask.
But I do know that sometimes varicose veins are blocked with a disc or with a polymer so that they die off. The blood “finds” another way (another vessel) and I presume that if cancer can order new vasculature, then so can a doctor.
But thats a big topic to learn about.
The cool thing is, though, that the newly forming vessels are blind– but they sense the chemical signal as getting weaker or getting stronger. You know that pin-the-tail on the donkey blindfolded game: “warm, warmer, colder, colld , cold, warmer, warm, hot hot hot.. its a bit like that for the new vessel until it reaches the tissue in need. Or the cancer.
Perhaps you will find this addition useful: There are also natural remedies to increase NO levels. For more information, see https://www.youtube.com/watch?v=UH-M_RtUvj4.
I just went hunting L-Citrulline, and, you know … rabbit hole… now I have come across several studies that cite NO levels are elevated in ME/CFS patients 🤷♀️
Just going to continue to eat blueberries anyway – coz they’re nice!
New to this space, not so much to this place (dx with ME/CFS in 2017 – currently in a relapse) … loving the science through to spiritual chat 🙏
So grateful for all the articles and people who clearly put in so much work. And wishing everyone so much wellness.
Ok, but please, then, quote the context:
for eg. in what regions is the NO elevated? All the time? Or during exertion? During PEM?
Is it in the blood or in the cell?
NO is also a cytokine. It’s a *friendly* cytokine, but it should fluxuate with the systolic/diastolic phases– constantly.
In fact a long time ago I talked about sepsis– in which you begin with a fever, cytokines abound, but you get quite toxic with them, the hypothalamus decides this is not working, and makes the temperature set point Hypothermic. (Fever Hyperthermic)
And while there are perhaps 5 cytokines active in fever, sepsis, I believe is reduced to TWO: I believe they are Nitric Oxide and Bradykinin (think “pain”)
So — to put my comments on increasing NO into better context,
they are only too high 50% of the time– that is, when the vessels should be constructing to pump blood back to the heart.
As in most if tge CFS symptoms, there is a lack of HOMESTASIS about the desired median point.
To incorporate your comment: the ambient NO level seems to be too far above the homeostasis median point during systolic, and not far enough below it during diastolic.
It should not be stuck in either high or low gear.
If always high then this could account for low blood pressure requiring tachycardia to take up the slack– as in POTS.
I guess, given your helpful comment, that the task is then to see why the RAAS (renin-angiotensin…..) is not regulated properly.
When I consider brain inflammation being a given in CFS, and sepsis with hypothermia lowering the temp. set point to control brain temperature, it naturally follows that the thyroid system would never receive the green light from the Hypothalamus to induce shivering or to fuel exertion.
Such a green light would equal brain suicide.
It is for this reason that I consider the first step if CFS recovery to seal the blood-brain-barrier (resveratrol or coffee fruit (not the bean)
and simultaneously or secondly to seal leaky gut.
sorry:
*HomeOstasis
and
Fever IS hypERthermia
L-Citrulline has a proven efficacy in restoring nitric oxide within the system…daily supplementation has studies confirming its affects…it is being used widely in sports medicine to enhance performance and recovery… looking at cocoanut oils: get “fractionated” cocoanut oil C-8, it supplies the mitrochondria with a medium chain fat (non storable) which burn 10x the energy as carbohydrates…true MCT C-8 oil comes in glass containers, as it is so pure that it leaches additional carbon atoms from “plastics”, rendering it a status of “long chain” and becomes a stored fat(C-12+). again CITRULINE supplementation is a strong recommendation
You can increase nitric oxide in your body by properly breathing. Here is one article, but if you google it, there is much more. https://www.winchesterchiropractor.com/healthy-breathing
Indeed! I sometimes wear a face mask myself to feel more energized.
Have you had nitrous oxide again to test whether it would work again?
Spitballing…
Recent reports suggest illicit pregabalin (Lyrica) use may be increasing among youth, however the addictive potential of pregabalin has not been well established. Drug seeking behavior and chronic drug use are associated with deficits in glutamate clearance and activation of postsynaptic glutamatergic receptors.
Pregabalin inhibits glutamate release.
Now, after a chronic *blockade of glutamate receptors*, neurons in hypothalamic cultures reveal excitatory electrical and Ca2+ synaptic activity, not elicited in control cultures that were not subjected to glutamate blockade.
This activity is suppressed with acetylcholine (ACh) receptor antagonists and potentiated by eserine, an inhibitor of acetylcholinesterase, suggesting its cholinergic nature.
*** The upregulation of ACh receptors and the contribution of ACh to the control of the excitation/inhibition balance in cultures after a prolonged decrease in glutamate activity were also demonstrated.
Glutamate down, acetylcholine up.
Pyridostigmine works by inhibiting the acetylcholinesterase (AChE) enzyme from breaking down the neurotransmitter acetylcholine (ACh), and thereby increases the bioavailability of ACh and enhances the transmission of nerve impulses at neuromuscular junctions.
Could be wrong here.
If not, maybe something similar is happening?
According to me, you are bang-on.
One faithful Healthrising reader/contributor said she was taking (a drug) to tame the ‘glutamate excititoxicity’
for the purpose of getting more restorative sleep.
I COULD NOT AGREE MORE.
The Ischemic Cascade following hypOperfusion of muscles and some brain areas includes a rising glutamate level in the motoneuron and cognitive brain (Amygdala?) synapses in an upward spiral (think PEM)
In other news, a CFS sufferer and former athlete fought her way back to increased exertion by taking Mestinon (think MG myasthenia gravis) and her recovery story is on Healthrising.
It makes TOTAL sense to me, then that if acerylcholine is insufficient ir receptors are blocked, plus glutamate levels are spiralling upward in excitoxic quantities,
that your above suggestion of Pregabalin (Lyrica) plus Mestinon could be a 1-2 punch enabler of more exertion.!!!
Another slightly different hypothesis along the lines of your suggestions : he could have a cranio-cervical instability. One night, his neck may have been “perfectly straight” (that is, without any pressure on the spinal cord) and he then has proper sleep without all these micro-awakenings caused by spikes in blood pressure, etc. He can function again. But unfortunately, one day something in his neck starts pressing his spinal cord again and he’s back to square one.
Whilst I agree this deffo happens in some m.e. patients, I have these mini improvements on the day I don’t get much sleep..so smthg else mught be also at play
My sleep patterns were 100% tied to my intracranial pressure. In fact, I was diagnosed with narcolepsy initially. On days my pressure is better I sleep less and felt better. On days it is worse I sleep longer, sometimes more fitful and sometimes more coma-like, and feel worse during the day. The brain controls everything, so when pressure is applied, it can change function.
Interesting. I’m happy for it to be anything as long as it’s treatable.
Diamox treats intercranial hypertension does it?
How are you fairing now
I’m doing very well. I had an underlying high pressure condition that was mild enough that I didn’t really make the connection before leaking (my entire life I would have flares after pressure events but I attributed that to illness—like any time I would fly somewhere I would get sinus and throat issues, mild fever, fatigue, body aches, and think I had caught a bug, but it was intracranial pressure and drainage—the “bugs” were not contagious and no one else got sick). There was always a lag for symptoms, like PEM.
I do think age and the time I spent bedbound worsened my structural issues so the high pressure is more difficult to manage that it was before. But I’m able to have zero pain and less brain fog if I make lifestyle adjustments like bare minimum sodium intake, avoiding vitamin A foods and meds that raise pressure, sleeping on an incline, and doing gentle activity like walking with no straining or heavy lifting. I have Diamox for higher pressure days but I would warn it’s very difficult to find the correct dose since it varies by the specific case and too much can cause a problem. Also, it lowers pressure so anyone with low pressure from a spinal leak could get drastically worse taking it. But I think ICP is, if not the cause, then at least a massive contribution to symptoms in many chronic conditions.
I would recommend anyone who has not been properly evaluated for pressure issues to look seriously into it. (Stress on the “properly” because so many doctors dismiss it out of hand.) Even with normal imaging, this can be the cause.
Something similar happened to me after I was very ill following a short virus in Sept2023.
The acute virus was about 3 days, but then I experienced a month of intense fatigue, body pains etc. One night, I stayed up until about 5am, watching movies, and the next morning, it was as if something was blown out of my body and I had no further symptoms, aside from the odd mini flares of similar body pains/malaise around my menstrual cycles.
Unfortunately I’m in a similar situation now, after an EBV activation, and this time, accidental sleep deprivation doesn’t seem to produce the same miraculous recovery sadly. That said, I am experiencing a wax and waning of symptoms with blood draws, posture changes, food, and suchlike, which is totally bizarre.
Martin’s story makes me wonder about whether there may have been environmental conditions that changed (and changed back)?
The “usual suspects” these days might be mold or some kind of emf exposure, but I imagine there could be others?)
My theory is Martin’s latent EBV, Lyme disease and maybe other chronic pro-inflammatory stressors are creating an atypical neuritis in or connected to his brain stem. That could lead to ANS dysfunction, dysautonomia. The temporary remission would be due to the latent infections or other stressors waxing and waning slowly enough that the neuritis stops and the brain stem is able to function normally again. That would reverse the ANS dysfunction. But the latent infections and stressors continue and eventually under sufficient stress re-injure the nerves involved
Hi. Respectfully, among the various intracranial pressure posts, I am not getting a definitive picture that 100% if the examples are about CSF fluid.
The baroreceptors on the blood vessels can *tell* you your BLOOD pressure is high, but that is if they are functioning correctly. CFS is systemic, and long covid has been likened to it. Systemic vessel and organ damage. If the baroreceptors in the vessels (a7 nACHRs) are now at a low population because if remodelling, I imagine that the nervous system will need to compensate by lowering its pressure threshold. This seems to happen at dorsal root ganglia in the case of Fibromyalgia, where MORE sort-of hub receptors are expressed to amplfy the net signal to the brain that there is an unhealed “condition”.
The ticket would be to inhibit such overexpression.
I am not saying that anyone who senses intracranial pressure does NOT have excess CSF, but we DO know that the only things that are truly system-wide are vessels and nerves. And *the vessels are laced with the nerves.*
If you know you have excess CSF, then I believe that. But if a doctor doubted it or neglected it, it does leave an unanswered question as to whether the receptors need a reset.
Furthermore, the worst feature of non-restorative sleep us that all receptors are intended to be reset to baseline to start as “innocent” tomorrow morning, but the sleep is interrupted or kept out of Delta Phase restotative sleep to an extent, and the receptors awake “experienced” if you will. If I understand CFS patients correctly, they feel as though they never rested at all.
No reset.
So it probably is CSF, but could be baroreceptors who are “stuck”.
I had CFS for ten years with no improvement. I started working with a homeopath, Farah Gron, at newlifehomeopathy.com I gradually started feeling better and am now back to being able to work 12 hours a day without tired–and I am 80 years old.
Bob, what do you think helped you get well?
What helped me get well was working with homeopath Farah Gron. If you are not familiar with homeopathy I recommend you go to her website http://www.newlifehomeopathy.com/info.php where she explains how homeopathy works. I tried other homeopaths, but they were not helpful. Farah uses water dosing where the homeopathic pellets are dissolved in water and then you take just a 1/4 tsp of the water. The rule in this form of homeopathy is Less is More.
So pleased for you Bob. Sadly her fees are far too high for me.
Hi Bob, I congratulated you below (though I goofed and replied to the wrong message). Now I have another question please. Did your homeopath work with you using a constitutional remedy, or did she use multiple (serial) lower-potency remedies to work through layers of symptoms? (I’m asking because I’ve seen a few highly skilled constitutional homeopaths over the years, and they always want to give me one of the same small group of remedies, none of which has moved my needle. But I’d be willing to give it a try with someone with a more flexible approach.) Thanks!
Bob- that’s amazing! So happy for you, and thank you for sharing your experience and your resource 🙂
Super interesting. I think this is the single most important part of this whole story:
“he’s convinced that there’s nothing inherently permanent about his ME/CFS.”
I believe that for many of us this illness is an acquired brain injury—specifically of the nervous system. With that in mind, this quote bears examination:
“The medications that helped him such as Lyrica, benzodiazepines, and Tianeptine worked on the brain. His symptoms, on the other hand, have always seemed overwhelmingly physical.”
This dichotomy does not exist. The brain controls virtually very bodily process. Almost any physical symptom can be caused by the brain, no matter where in the body they occur.
I suspect that understanding this is the key to recovery.
Aaron, you might like watching this. https://youtu.be/kwj2UyE0xlo?si=AVCR6Xalarkp2WO6
I have so many questions! And so many thoughts about this… Will have to come back tomorrow after some research. 🙂
We see these sudden remission events with Remission Biome and often the remission is preceded by feeling worse.
The night before my 2009 sudden remission event, I also I thought I was going to die. I was at my lowest point. I think there is something to that piece of it.
Oh my gosh, Tess! I’ve lost sight of Remmission Biome and hope you’re all moving on with your experimentation. Is there a way to follow along with what RB is doing, besides following on X? So good to see you pop up on Health Rising!
I just signed up for Remission Biome newsletter on their website
Thank you Gail. It certainly *feels* like low oxygen in my brain.
Also, Cort, my comment was in no way meant as a criticism of you, so I hope it doesn’t come across that way.
Agree that the key message here is that rapid improvement is possible. But we already knew that.
I’m sorry David, that was an answer to Aaron a few posts higher up.
There are MANY people convinced that recovery is in fact not possible. So I believe this point is worth repeatedly emphasizing.
Aaron I agree it is worth repeating! That is the reason I stopped following several ME/CFS support groups. I believe it’s also related to why I have improved… I have a close friend who cured herself of CFS 35 years ago when it was named Yuppy Flu. Mindset is very important!
The key word you used there was “seem”.
Seem to what?
To the cognitive brain.
There are allodynic people whom every touch hurts and analgesic people born without a pain sensitivity. A man once walked home without sensing pain from his broken ankle. Paraplegics amd amputees sometimes “feel” phantom pain.
There is one brain, but several labours divided.
The efferent nerves send instructions to the body, and afferent nerves bring back pleasure/pressure/pain/temperature messages.
BUT: before such a returning message is handed over to the analgesia (pain relief) system for review, they are all intercepted by the Reticula formation.
The Reticula should let you sleep at night because sufficient melatonin has been released on the BODY after the covered eyes send melatonin to the BRAIN. Melatonin then causes body receptors to attenuate their sensation intensities. What then goes to the Reticula is usually unimportant. The AUTONOMIC brain can then go about restoration by commands to the organs.
As such, a light brush may not wake you.
The Reticula uses a form of discretion.
If the cry for help from a tissue is now louder, as the injury worsens, then more pain is sensed or “seems” to be occurring. If it is the same as it was from moment to moment, then, in voltage-controlled amplifier style, the pain will be turned up — which is to say– not RELIEVED as much by the analgesic system. But pain or pressure is not assessed by the body. It is assessed by the autonomic brain.
The pain or pressure differential over time is, as described, at the discretion of the Reticula on a “need to know” basis.
For example, did my back hurt all night? Or only when I was awakened?
Sensation is mental.
Lastly, it is said by neuroscientists that the body is run by the autonomic brain. And if the autonomic brain were to have a brain as well, it would be the HYPOTHALAMUS.
Many times on Healthrising it has been stated that the HPA axis (Hypothalamus-Pituitary-Adrenal)
in CFS is out of Homeostasis.
To put this in useful perspective, then,
-in Fibromyalgia (at *least in fibro) there are excess nociceptors (noxious stimuli) at the entrance to the spine.
and these, by aggregation send a louder sensation signal afferently to the Reticula. It can be enough to wake a person owing to : a light touch ; a slight warming ; a slight cooling ; not much light; exaggerated pain signal compared with the contact made, when you compare it to non-fibro people.
-either CFS patients alone or BOTH CFS and FIBRO patients, to me, seem to be experiencing glutamate excitoxicity which awakens them somewhat out of Delta Phase sleep into phase 3 or 2 or 1… or completely. It’s not a lack of duration asleep as much as a deficit of that time being in Delta brainwave Sleep. Delta does not include rapid eye movement nor dreaming, nor memory consolidation. It is strictly the autonomic brain resetting receptors to homeostasis and orchestrating healing.
In a nutshell, the Reticula is responsible for body awareness, and that includes sight, smell hearing, taste, but like an executive assistant or administrative assistant, the Reticula assesses whether an event is worthy of disturbing the Director… or not.
Hello Aaron,
if you look down the page a few posts, you will see that I responded to this post of yours with regard to dichotomy and more specifically to what “seems”.
I want you to know that I watched a young-ish PHD in Neuroscience lecture on this. The lecture was dealing with what we call “central sensitization”
and that word central refers to the central nervous system. I would not expect the entryway to the spinal cord (dorsal root ganglion) to be considered central, but it, after all, IS cordoned off from the body, and the brain cordoned off from the spinal cord. And it’s in the middle…. right?
Aaron I agree it is worth repeating! That is the reason I stopped following several ME/CFS support groups. I believe it’s also related to why I have improved… I have a close friend who cured herself of CFS 35 years ago when it was named Yuppy Flu. Mindset is very important!
I agree with MJ. I have to wonder if he was in a different location prior to, or during, his temporary recovery period.
Fascinating!
I do know sleep deprivation works for me, but just for a day. There have been times when I got up at 3:00 am or earlier to see a family member off on a trip and the rest of the day I’d be CFS-free with great energy. After a full night’s sleep it was back to CFS.
Metformin may help you sleep better. Take with an evening meal. Rule out cervical stenosis or instability. PEM can be caused by cervical stenosis and corrective surgery cured me of PEM. There is a subset of CFS patients but diagnosis requires a very good neurologist and MRI. Cure requires a talented neurosurgeon.
I WONDER HOW A METFORMIN HELPED WITH RECOVERY. ?? I HAVE EXTREME PEM AND ALL THE /OTHER CFS/ME /FIBRO/ HI PAIN SINCE 1988 >PRESENT. WENT TO NIH 6 XS AND WALTER REED. REGAINED SOME ACTIVITY ON MANY SUPPLEMENTS MEDS > AND SLEEP AND ISOLATION. CONSTANT HOW DID THAT MED HELP. ?? THX.
Metformin reduces intracranial pressure. If you see improvement with it, you could look into intracranial hypertension and compression issues.
studies have shown that metformin can alter the composition and function of the gut microbiome. These changes may have beneficial effects on metabolic and immune health.
Some of the ways metformin may affect the gut microbiome include:
Enhancing certain bacteria: Metformin can increase the levels of Escherichia sp, Akkermansia muciniphila, and Subdoligranuum variable. In mice, metformin treatment has been shown to increase the abundance of Akkermansia muciniphila in the gut flora of mice on high fat diets.
Reducing certain bacteria: Metformin can reduce the levels of Intestinibacter bartletti.
Increasing short-chain fatty acids: Metformin can increase the levels of short-chain fatty acids (SCFAs) like butyrate and propionate. SCFAs may help maintain intestinal flora, regulate bile acid metabolism, and improve glucose homeostasis.
However, the effects of metformin on gut microbiota diversity have been inconsistent across populations. More research is needed to understand the underlying mechanisms and clinical significance of these changes.
This is for informational purposes only. For medical advice or diagnosis, consult a professional. Generative AI is experimental. Learn more
…
the metformin caused consistent vomiting ( and severe stomach pain right before and after vomiting). hope that isn’t the case for most people.
Hi Dennis, I certainly have cervical stenosis. Could you share which surgeon you worked with? Did it cure your MECFS completely? Not any articles I think related to cervical stenosis and MECFS. CCI yes but stenosis not that I’ve seen?
Dennis, I had surgery for cervical instability after being bedbound for months. It did help, I am not bed bound, but I am still pretty much housebound due to pretty severe PEM. I also have some stenosis in my neck and am wondering if the surgery didn’t take care of all the issues. What does corrective surgery for stenosis entail? Are there many neurologists out there that see this correlation with PEM? My surgeon mostly deals with people with Ehlers-Danlos Syndrome, which is a problem with ligaments. I’m wondering if my problem involves more than just ligaments and where to go from here.
I had canal stenosis at C-4and C-5 space. The neurosurgeon placed a plate with 4 screws while I was stretched out with a traction device. I think the surgery took more than 2 hours. both the surgeon and I were 75 years old. He retired 3 months after the surgery. That cured me after 20 years of PEM.
The case report is ” Improvement of severe myalgic Encephalomyelitis/Chronic fatigue syndrome symptoms following surgical treatment of cervical spinal stenosis by Peter C Rowe et al PubMed 6/1/22. the article is from J Transl Med. 2018 Feb 2;16(1):21.
Hope this helps.
Thank you, Dennis. Hard to imagine going through another big surgery. I’m hoping that that isn’t what it takes. But this information is very helpful. So glad that you made a full recovery!
I have had CFS for 10 years with life limited to barely being able to do what I need to do to care for myself. I’m able to sleep with a high dose of Trazodone, but I have had a terrible habit of staying up late that I’ve struggled with, but never conquered, as completely destructive to my health and well being as I knew it was. Recently however I read an article about how sleep deprivation can cause you to feel good the next day and I realized that truly – on the days when I had gotten the least amount of sleep the night before, I felt strangely good. Then I put it together that I was unconsciously chasing that burst of good feeling by staying up late. The knowledge is helping me get to bed, though it’s still hard. I have so much empathy for Martin as he now tries to reason his way to finding a remission in another way. And thanks for sharing his story. It is powerful to know that CFS can stop or greatly improve. I hope his knowledge of this helps him find his way.
Interesting, thanks for saying this. I have always had a tendency to stay up late (delayed sleep phase) and it has been a problem, causing me to be too tired when I have to get up early. But, I think one reason I do this, is that if I’m feeling reasonable, I don’t want to go to sleep because I know I will wake up feeling awful. It is a lifetime since I woke up feeling good in the mornings!
As someone who’s struggled with sleep issues, I wonder what kind of diagnostics Martin has gone through with sleep neurologists. My sleep doc is at Stanford, and I’m one of those weirdo patients who makes even those world class researchers scratch their heads. I have what resembles cataplexy when started or severely stressed, but sleep lab tests supposedly ruled out narcolepsy, even though it runs through my mom’s family and I have the genes. My ME/CFS/Lyme doc once told me he’s seen a handful of patients who display cataplectic symptoms but test negative for narcolepsy like me.
Has an overnight sleep lab study been done, including a daytime multiple sleep latency test for narcolepsy? I have experienced severe weakness when startled or severely stressed, but it’s rare for me to drop to the floor, even though it’s happened once (cat jumped into the frying pan while I was cooking).
I also have complex sleep apnea which I treat with CPAP that was diagnosed in Stanford’s sleep lab. I get both obstructive and central sleep apnea events, and my ME/CFS and cataplectic symptoms dramatically worsen when I can’t use my CPAP. Makes me think you’ve got some sleep disorder that’s not being diagnosed.
And one last thought about your Lyme disease. Have any of your doctors considered chronic neurolyme that’s buried itself in your brain? Have you tried the treatment schedule of 3.5 days on rocephin with a biofilm/cyst busting agent (7 treatments), then 3.5 days off to see if your symptoms improve? I’ve met patients in my doc’s IV room who can only have somewhat normal lives by doing this regularly. They’ve never been able to completely cure themselves of Lyme disease.
If chronic neurolyme is a possibility, check out Columbia University’s website. They’re pretty much the leading experts on neurolyme: https://www.columbia-lyme.org/treatment-options#:~:text=Ceftriaxone%20(Rocephin),often%20be%20given%20intravenous%20ceftriaxone
Hopefully, you’ll find some answers soon!
Pretty much none of these options is available in the UK. I can’t imagine getting a sleep study done or any treatment for a sleep disorder. We have difficulty getting a primary care appointment now. I did have a test for Lyme, which was negative. The NHS does test for Lyme, if you have symptoms and you request a test (no offers) but it only tests for that specific spirochete, none of the others
At this time I’m able to work at most 10 hours a week. From around 2006 to 2011 I could work 20 hours a week. The best I felt was from maybe 2012 to 2016 when I was often able to work 40 hours a week, although I needed to do almost nothing else nights and weekends. I stumbled on one thing that helped me the most during that time by accident. After another night of waking at 3 am, after falling asleep at maybe 11:00 or 12:00, and just lying there, I was so bored with being awake in the middle of the night that I got out of bed and went to work (I worked as a handyman for several apartment buildings and was able to go into my office and work on paperwork etc). I found myself extremely irritable for several hours and then around 8 or 9:00 am I suddenly felt great. Happy, no fatigue, my digestive system relaxed rather than feeling like it was knotted up. I found that if I did this more than once a week I’d feel a different type of tired than I was used to. But every once in a while if I did this it seemed to reset something. Normally I would wake up at 2 or 3, be awake for a couple hours and fall back asleep at 5 for an hour or two. I also found that when I did sleep well, there was a huge benefit in getting out of bed the second I woke up in the morning. Otherwise a drugged, groggy fatigue would affect me the rest of the day in proportion to the amount of time I would lie in bed half awake. A stressful move in 2017 undid the progress that I’d made and getting up a 3 am just made me worse after that. I improved some but then in 2020 I got covid and that pulled me down farther than I’d ever been before to being bed bound 95% of the time. I’m improving little by little again and hopefully nothing major pulls me back down.
If this happened exactly as you describe, Cort, it is very interesting.
But I am sorry to hear that Martin is now ill again. I wonder whether he is again bedbound?
What I found interesting in the description is the fact that when on top of being bedbound for three years there came this extreme sleeplessness on top Martin began to think that he would probably soon die.
I wonder whether this maybe came as a great relieve to Martin and that the understanding that soon he wouldn’t have to struggle and suffer so hard brought a deep peace of mind.
We all now how mental and emotional distress are food to the ME/CFS inflammation process. So I imagine that when you can bring this to an end that you experience extreme well-being and that experiencing such a profound well-being after being under constant stress with a horrible illness for ten years can cause such a releas of energy that leads to an instant recovery process. The energy must have had an influence on the immune system that was now able again to fight down whatever it is fighting (smoldering HHVs in Martin’s muscular neurons?).
As a long time Buddhist practitioner the description of being overcome by intense waves of energy reminds me of stories of people who have had special experiences around their meditation practices. Therefore I don’t find it in any way unbelievable.
Jack Kornfield’s book “After the Ecstasy the Laundry” gives a broad overview of similar experiences from practitioners of Buddhist and other spiritual and mystical religious traditions.
Another parallel is that these experiences are impermanent and come to an end again. A characteristc that was the inspiration for the titel of the book. Because in spiritual practice people of course attach themselves to such profound experiences of well-being and the book is also a guide to understand how to let go of them again.
In my explanation the path back to being ill again for Martin would be that this energy release ended and then Martin’s habitual mind and heart patterns came to the forefront again and the ordinary daily distress they cause brought the immune system back to its old normal and the inflammation processes began again.
I am also not at all surprised that Martin has found out that ME/CFS is reversible. As a matter of fact top researchers like Jackie Cliff and Eliana Lacerda from Brunell University and the London institute of hygiene and tropical medicine have just the same understanding. It is a chronically recurrent or episodic illness and thus is reversible – at least if tissue damage can regenerate.
A religious person from the Christian tradition who has experienced similar things as Martin describes when she was falling severly ill as a teenager was the Catholic Saint from Spain, Teresa of Avila. She lived in the 16th century.
There is good literature on her experiences with illness and recovery and “abnormal” situations of healing and energy beacause she wrote it all down and became such an important figure in the Christian World of her time.
Lina, i had exactly the same thought. The sentence ‘ As the months went on he thought he was reaching his end.’ did strike me as the last judgement of himself in this report before Martin experienced his unfortunately short recovery period, @Martin, can you confirm that you had the feeling of giving up? The relaxation, and thus relief of neurologic stress, may have made the difference. Upon recovery, the stress triggers (thoughts; trauma?) of Martin live up again, bringing him back in his mecfs state.
Yes, exactly! Happy you share my thoughts. From my early yoga days I now even rememer a yoga school, Kundalini, where the goal is to access the release of such intense energies. They think the door they need to open to do this is in the pelvic region of the “first chakra”.
At the time I thought that these people are weird. But later I bumped into this book by Jack Kornfield and realised that indeed such out-of-the ordinary mind-body experiences seem actually normal experiences of the living embodied mind. It’s just that not everyone has them.
Lina and Peter, I agree too. Sometimes we give to much importance to the physical/chemical aspects of the disease rather then looking at the emotional/spiritual aspect. I’ve been working with a NES practitioner (quantum energy) this past year with small success. Working with this energy has brought my awareness to trauma. Even though I didn’t ever see myself as experiencing trauma on a rational level, maybe my nervous system has. 🤷🏻♀️. So I’ve started working in that direction of trauma release/meditation/connection. I’m no longer feeling the weakness dips. I’m not “normal” yet, but I’m plugging along steadily and slowly upwards.
Hi Jaci, I am glad you have found something that is helpful for you. I was a practitioner of the Buddhist path with mindfulness meditation at the center long before I got ME/CFS.
I many times realised how blessed I was to have known these practices. Because I understood very soon into the illness that distress is such a great food to the inflammation processes.
Many peopel, especially from the long covid group think that ME/CFS has something to do with the nervous system therefore. But I think they are plain wrong.
I am convinced the cause is smoldering, reoccurring HHV-6b inflammation, first in the immune systems T-cells and as the illness progresses to moderate and severe in the neurons either of the brain or the muscles.
The reason why we are so susceptible to mental distress is because it takes energy. It namely takes energy away from the immune system that needs enormous amounts of energy when fighting inflammation.
I hear of many people that they want to ressolve trauma to help recover from ME/CFS.
I think that this notion is confused. Traumatherapy is something that is only adviced when one is in a very safe and stable life situation. I mean having ME/CFS is often traumatising because of the lack of support and the gaslighting. You really want to be in a more supported and safe situation when you adress unresolved traume from the past.
It might even be dangerous. Because there is so much quackery offered in that field. The best way to go is to learn to rest and pace. The great majority of patients then stabilises and recovers slowly but steadily. Psychotherapy should only be used to cope with the difficulties present in the present and come as a support for the health management.
I was part of a meditation school before I started having symptoms. Like you, I was very grateful for it. The work we did on victim character was very helpful in the beginning, along with using discernment, knowing what I need. Have you seen the other post on Hormesis? I’ve gotten successes with that also. I have to say, at least for me, autonomic nervous system dysfunction is at the forefront. I work with an NES practitioner and this comes up consistently (along with autoimmune). 🤷🏻♀️
Hi Jaci, glad you have also benefited from your meditaiton practice. I have never heard of Hormesis. What is it?
About the problems with the autonomic nervous system there is a misunderstanding. I don’t have any of those but fulfill the Canadian Criteria with other core symptoms.
But I wasn’t referring to those when I wrote that I observe many people – whether they have the dysautonomia in ME/CFS or not – following an idea that at the core of the problem with ME there is a problem with the nervous system that can be fixed with meditation and psychotherapeutic practices.
I am very wary of these people because I think it is wrong and will only lead to frustration.
I believe a problem with the immune system is at the core that then allows HHV-6b to smolderingly reactivate and cause ME/CFS and in the course of deterioration harms the immune system (T-cells) further until reactivation starts also in neurons. Thus, it’s a virus that damages the nervous system. Not some New Age thought inspired nervous illness.
Therefore, everything what you do to manage stress well and reduce toxic distress is helpful. But you don’t cure anything with that. You offer the immune system more energy to fight HHV-6b and then when you become post-infectious and are able to stabilise symptoms and a regeneration and recovery sets in you allow and support the damaged organs (vessels, brain ect.) and the immune system to repair itself.
But nothing’s wrong with the nervous system itself.
The most convincing theory I have heard to explain dysautonomia says that it’s the damage to the vessels caused by the ME/CFS inflammation toxins that are the cause for that (Klaus Wirth and Carmen Scheibenbogen). Their ideas were discussed here on HR.
Lina, I am not picking on you, but I feel the need to respond and will warn you that I’m one of those people you are very wary of🤣! And I believe that, while there is no one cause or cure for CFS, many people have trauma as a cause or a contributor to the illness. I did an unscientific poll with a ME/CFS group about their history of trauma, 50+% reported trauma in childhood, more recent to their diagnosis, or both.
But, what is trauma? It’s not necessarily a big T thing like war, but can also be from little ts like bullying or abusive relationships. Trauma is anything that your nervous system can not process and resolve causing lasting harm. Many people don’t know that they have a trauma response, one way to deal with a traumatic event is to dissociate out of the body and repress the memory, so they don’t remember or “know” they have it believing in a very narrow definition.
Trauma also has effects on multiple physiological systems from living in a state of hypervigilance and fight or flight. When the nervous system can no longer sustain that high energy state (sympathetic activation) or can no longer avoid the traumatic stimulus it can be pushed into a state of functional freeze (dorsal vagal), in other words, dysautonomia. This is a low energy state of forced inactivity and illness behavior until the threat is resolved. For many chronic illnesses, the illness itself including our internal dialogue about it is the threat. To overcome it you need to provide the nervous system with a felt sense of safety which vagus nerve stimulation can help accomplish. But, if there is significant trauma it can be very difficult to do this because the body is not believed to be a safe place.
Trauma therapy is NOT something that is “only advised (I have been through almost 50 years of talk therapy and nobody ever advised or even asked me about trauma, and my father was a psychiatrist and my mother a psychologist) be done in a very safe and stable life situation”. I got trauma therapy (advised myself) once I got confirmation that my self-diagnosis of CPTSD was correct. I couldn’t wait until I was in “a more supportive and safe situation”, like what? I had to create the safe and supported situation within myself. And I got appropriate trauma therapy, EMDR that includes working with the body. This is necessary for trauma because the body keeps the score as Dr. Porges delineates. Psychotherapy alone, the talk only kind, doesn’t work for trauma. Only once the trauma is resolved are the body and nervous system are amenable to healing.
Why do I believe this? Because I did the research, educated myself, and I lived it. I didn’t know that I had childhood trauma because I was too young to remember. I have a dx of, among other things, fibromyalgia and CFS, dysautonomia, chronic reactivating EBV, complex PTSD and POTS. I was not misdiagnosed, as several people told me “because I got better”. No, I got better because I did the research and the hard work.
I came to believe that more recent traumatic stress before and during the pandemic, and on top of the childhood trauma I didn’t know about and which also predisposed me to further trauma, overwhelmed my immune system, which caused reactivation of EBV, which lead to CFS and fibromyalgia. I have been able to reach complete remission from fibromyalgia, IBS, chronic urticaria and asthma, and the CFS is 80% improved using research-supported treatments.
There was and still is 👉 something wrong with my nervous system, but I believe that it will continue to improve by regulating my nervous system (not psychotherapy), etc. LDN, Mestinon and Propranolol have been very helpful along with pacing, meditation, diaphragmatic breathing, increasing hormesis, and other lifestyle changes, and supplements to support my mitochondria, fight neuroinflammation, support digestion and my microbiome, and supress EBV.
I am neither misunderstanding, wrong or frustrated because I have figured out what was wrong with me and I made myself better. I also never believed that I was incurable, and 👉mindset is a very critical piece of the puzzle. Can people be cured if they believe that they are incurable? I don’t know. Perhaps, as you suggest Lina, this was a factor in Martin’s remission? I don’t understand how you can believe in this possibility but discount the “weirder” role of trauma healing and ANS regulation?
It’s certainly an interesting read.
I have modafinal to take when I’m super fatigued. I have always noticed though that I function better with less sleep. And times when I’ve had to be up really early, I’ve pulled an all nighter from fear that I would feel too poorly after sleeping (I always feel worse in the mornings) and worry I wouldn’t even wake up on time. The days I stayed up all night (and used modafinal in the mornings) I would feel so much better. Less pain, less of the flu like feeling and more energy. Strange that a lack of sleep can improve symptoms so much.
I think that the distress of sleep deprivation may work like a kick to the immune system to work harder and thus it is able to fight smoldering (HHV-6b?) inflammation better.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6143346/
What comes next explains why some function rises when sleep deprivation occurs. Most notably, one’s sensitity to possible rewards increases. I was quite surprised to learn earlier this year that drinking makes you more alert. Not more coordinated or more careful– on the contrary, almost EVERYTHING can seem like a good idea.– but dopamine is a motivator and increases alertness. Alcohol raises dopamine release. I have felt for some time that a CFS patient is lacking the normal dopamine rewards that would, say for a researcher or a long-distance runner, make one feel that one can go on further or longer.
I believe I read that in a stress test a CFS patient may feel unable for his/her muscles to continue working,
but that the monitors of his/her physical state do not show complete exhaustion of those muscles– hence the brain seems to get advance notice to allow the person to get to safety before ACTUAL exhaustion would occur. And that’s just plain survival wisdom.
Therefore, the very last quote speaks of dopamine, after sleep deprivation, hitting certain receptors harder (positively) while other receptors are actuallly bypassed.
Also, the review stated that the longer one stays awake, the harder it is to fall asleep. I have experienced this. It takes longer at that point to wind down enough to actually fall asleep. Certain curcuits, shall we say, become primed by sleep deprivation. You should read the whole review if you can. Chris.
“We provide a focused overview of the impact of SD on the human brain across five functional domains: attention; working memory; positive, reward-related affect; negative affect; and hippocampus-dependent memory. Drawing on neuroimaging studies, we explore the neural signatures underlying phenotypic changes in cognition and affect following experimental SD. Moreover, we present examples of how these findings afford mechanistic insights into clinical disorders associated with disturbed sleep.”
“Sleep pressure-related molecules, such as adenosine, and the hypothalamic system governing the switch mechanism between sleep and wake133 are logical candidates for the chemical signalling and network mediation of this prototypical dose-dependent attentional impairment with sleep loss. In humans, neuroimaging analysis has revealed that association cortices, especially in the frontoparietal attention network, are particularly sensitive to sleep pressure, whereas subcortical thalamic and basal ganglia brain regions seem to be more affected by circadian processes””
” | In the sleep-rested state, there is reciprocal inhibition between task-related FPN activity and DMN activity, supported by sustained ascending arousal input from the thalamus. This leads to consistent attentional and working-memory performance. In the sleep-deprived state, there is unstable reciprocal inhibition between task-related FPN activity and DMN activity, and erratic ascending arousal activity influencing thalamic activity. As a result, there is reduced task-related FPN activity and intermittent intrusions of DMN activity during task engagement. The behavioural consequence is variable and/or impaired attention and working-memory performance, worsening with lowered thalamic activity and improving with higher thalamic activity.”
“Under normal rested conditions, the Default Mode Network is functionally decoupled from the brain’s attentional networks — when the latter is engaged, the former is disengaged, and vice versa147.
“Both total Sleep Deprivation and partial sleep restriction122,148–150 impair this adaptive decoupling, and this impairment is further associated with participants’ cognitive vulnerability to SD”
“…result suggests that sleep pressure might be indexed by the levels of different dopamine receptors; consistent with this, adenosine accumulates with increasing time awake, activating A2A receptors and thereby driving D2R internalization40,67. Moreover, agonists of the A2A receptor and D2R demonstrate allosteric interaction such that A2A receptor agonists decrease the affinity of D2Rs for their agonists, including dopamine68. Thus, adenosine accumulation, which is associated with increased time spent awake, may decrease D2/3R activity by at least two possible mechanisms: by increasing D2/3R internalization and by reducing binding of dopamine to D2Rs (FIG. 2).
That SD is associated with a downregulation of D2/3Rs may initially seem to contradict the SD-associated increases in neural and behavioural reward sensitivity described above. However, one tenable (and experimentally testable) hypothesis that may reconcile this paradox involves D1Rs. Specifically, decreases in D2/3Rs could result in an imbalance of dopamine receptor availability, leading to the remaining D1Rs becoming disproportionately stimulated by the same amount of presynaptically released dopamine “
I had a temporary remission when I did the ketogenic diet. But it has never worked for me again after that first time.
Hi Michelle.
If Rob Phair’s Itaconate Shunt hypothesis of the innate immune system reaction to attack staying stuck in the ON position (when it should defer to the antibody/adaptive immune system) is TRUE, then we know that Itaconate uses ATP to make more cytokines to extend the fight.
That alone is enough toxicity to maintain low-medium level inflammation for life.
The KICKER, though, of his hypothesis is that it says:
IF the cell is insulin-resistant
and
IF the cell must switch quickly to anaerobic ATP production using glucose
BUT
it runs out of glucose
AND
if the fat-metabolism system is shunting the ATPs it renders away to make cytokines,
THEN
there is no option left but low-ATP-return on metabolizing proteins.
Ok?
So then… the KETOSIS that the dieter seeks will perhaps work, but the ketones will not be made available to the brain and muscles.
It is posiible to be prescribed exogenous ketones which could be takem directly to the brain.
The other possibility with Keto is this:
not the lack of carbs, but the
INTERMITTENT FASTING.
Recently it has been stated by Dr. Gundry that fasting puts our cells into a *caloric bypass* state which he also refers to as “wasting of energy” by the mitochondria. What he means is that the mitochondria have been switched into a Ketosic state and the LIVER will now convert fats to ketones.
This state seems to have been designed by nature to allow people who may not be successful each and every day of obtaining food to still have a source of brain energy.
Presumably we no longer suffer from shortage but our bodies still are programmed to expect it. It is meant to kick in during sleep since we are truly fasting (not eating) from bed time to wake. If you extend that fast another couple of hours either side of your sleep, you may activate ketosis.
THEN, it wont MATTER if you cant aerobically burm glucose.
Moreover, what wakes people up at 3/3:30 am is usually a blood-glucose LOW which could otherwise lead to coma, and our Adrenals do a Cortisol spike to trigger a liver glycogen break-down to correct the sugar.
Unfortunately, thats what happens upon morning wake time too. Not a sugar low, though, but a circadian message to do a cortisol spike.
For people whose cortisol pattern seems backward, consider this:
Your Adrenals work overtime making cortisol because of your extended infection, sometimes capitulated by the brick wall of life-stress endured too long.
So with your 3 am Cortisol spike, youve already awakened.Bear with me, but now at 3:15 you begin OVERSLEEPING compared to your wake-up call by cortisol. Now your cortisol/glucose becomes absurd by alarm time or sunrise. That is why an inappropriately low amount if cortisol is given until a couple of hours pass.
Until your tired adrenals stop overproducing cortisol, or *ATTEMPTING to overproduce it! , they will be down for the count and your circadian rhythm will not be Obeyed, even if it us still intact. Its a bit like a drunk trying to stand back up on a skating rink with shoes on. The adrenals DO try, but they no longer have the resources.
All I can say about the evening surge if cortisol and wakefulness amd energy is that most of us sit in the evenings.
Finally exercise and reasoning is not competing for your energy and three meals have restocked it. Now the Adrenals cam at least get some work done.
You may also find that your low energy periods/low cortisol periods are also your lowest body temperature periods.
No wonder, when you cease your daily activities, you start to warm up. I hazard that one’s circadian rhythm may be offset by a number of hours at such a juncture in life.
There are ways to reset it, but the inflammation, innate immune state and adrenal dysfunction must first be ready for that.
Unfortunately, I have done keto a number of times since, and it hasn’t worked again. I recall reading something similar happened for someone else somewhere. When I first go sick I also had a Pacifc Island holiday for a couple of weeks. Again it put me in remission. The next time I tried it, I felt well while on holiday, but back to subpar when I returned home. I also had a good response for a bit to taking large doses of ubiquinol. It seems like whatever is causing the disease is pretty good at resetting to the sick state.
Maybe God intervened. It sounds like a miracle to me.
How bizarre! How great to recover so swiftly and how crushing to return to illness.
I struggle with sleep a lot too – my circadian rhythm has essentially flipped so I’m awake at night and exhausted during the day. Like other commenters, I experience extreme grogginess after waking and I also get cataplexy which mainly comes on when I crash – can’t speak, can’t move etc.
Jonas Berquist is studying sleep (OMF funded study) and is – I believe – hoping to find orexins in participants, which are very low in those with narcolepsy and so thought to be the cause. From my own experience, I’m convinced this is going on with me but I don’t know how much it determines the persistence of my ME.
… I don’t know if it’s possible to elicit such a big return to health but some ideas here that could have contributed and maybe triggered that:
Maybe Martin flipped his circadian rhythms and managed to increase orexin (which links to other bodily processes too). And Cort you mentioned sleep deprivation increases cortisol, which a study recently found to be low in ME/CFS.
That feels too small of a possibility but who knows!
I think the suggestion about CSF leaks etc is really interesting and maybe explains such a dramatic turn around and return to illness!
I have had ME/CFS + fibromyalgia migraines and low IgG for 11 years. An immunologist recently tested me for HaT( hereditary alpha tryptemseia(?) which I was born with)
I too feel sleepy in the morning until the afternoon and then wake up at night. I had my cortisol levels tested and they were/ are the opposite of what they should be: mine are low on the morning and continue to rise at night.y sleep patterns are all over the place. Clonazapm helps sleep. I have terrible startle reflex and used to be very high energy; anxiety starting g T age 8. I feel stressed all the time now. Wish I had a knock out medicine
Hi Nina, that’s so interesting you mention HaTs as it’s something I have on my radar to look into as well – you’ve just encouraged me to finally get on it!
I’ve never had my cortisol levels checked – is that linked to HaTs?
How do you find the clonezapam helps your sleep – does it help regulate the circadian rhythm or mainly knock you out when you want to sleep?
Thanks very much!
Martin I’m so glad to hear you had a remission, and you’re not the first to have a difficult to explain experience with this illness. I recently identified and began to treat my severe sleep apnea and that was followed by an impressive but temporary partial remission in my ME, FM, and POTS. However I ended up crashing into my new ‘ceiling’ and relapsing, but not quite down to the level I had been at before. The CPAP I use definitely helps improve my baseline and my resiliency. Parts of your story resonate with me because I’ve definitely also had a strange boost at times after poor sleep. I had just put this down to adrenaline, but perhaps it was something more complicated. I wish you the best in achieving another remission.
Wondering if you lost weight prior to your recovery? I was at a normal steady weight of about 135# while I had active CFS. For some reason, in mid summer, I started loosing weight rapidly. I lost about 2# a week over 6 weeks even though I increased my caloric intake and this was with no exercise. It was shortly after this that I saw a dramatic improvement in energy. I’ve wondered about the dauer (hibernation) effect from this episode. I also have/ EBV/tickborn diseases. I started taking amino acids and B1/B2 around this time so I can’t be sure that wasn’t part of it as well but I’ve always wondered if anyone else had ever noticed this.
My daughter has what is termed mild CFS which was acquired after a bout of glandular fever during a high-stress period starting at a new school. She can’t do much of anything but is not bedbound. Brain fog is the worst part for her though our unusually cold winter hasn’t been kind to her physical capacity. We both have noticed that she “comes alive” late at night. Her speech noticeably quickens. As a young person she lives on Reddit and this phenomenon is reported there as quite common.
Same here. I can feel like I’m going to collapse all day, but feel normal at 10pm. It makes it hard to want to go to sleep and lose that feeling.
I’m the same. I’ve also learned that I have adhd and that people with adhd often have delayed sleep phase syndrome. Many of us “come alive” from 10 to 2 or so. I suspect the adhd nervous system may be more vulnerable to ME and LC.
You might consider investigating this possibility for yourself.
I wonder if his despair and existential crisis triggered a stress response. I’ll share a bit of my awesome window of instant recovery. Like many, I’ve had ME-CFS for almost two decades. Im 53yo. In 2023, my husband and sole caretaker died suddenly. Prior to that I had been mostly housebound and at time bedbound for months. When he died, I immediately regained all my strength, my cognitive abilities were beyond anything I experienced. I took care of the death business in record time. I sold, emptied, and bought and renovated a house, in another city (all by myself.) I was running on something or adrenaline and felt fantastic. But, I COULD NOT SLEEP. Or if I did, it was deep from exhaustion. I felt normal again. The grief was heartbreaking but the first year was the best I’ve felt since my youth. I could take showers, walk for hours, socialize, travel – no PEM. I never caught any bugs going around. Now that things have settled a year in, I’m slowly feeling the return of symptoms. Counting spoons, restricting my activities, pots is back, etc. Something happened in my brain. I can’t understand it either. Im sleeping better, but recovery is fading. What happened?
It’s known that certain percentage of patients have spontaneous recovery/remission. The only thing you can say when that happens to you is that you won the lotto.
It was so surreal when I was suddenly able to sit up back in 2016. That improvement faded away after a couple of months just like Martin’s. Based on my experience, I’d say that Martin has better than average chance at the eventual recovery. It took me another 5 years before I was half recovered, so it could be a while for Martin too. Last year I backpacked 80 miles through Yosemite in 7 days and now I’m in NYC taking 10k to 30k steps just about every day. I’m planning to do 150 miles around Tahoe this fall.
TK, your story is inspiring. Would you share the secifics of your treatments that brought you to your current place of recovery?
Thank
Lise, I’ve been able to do more without triggering PEM when I’m in a new city or on the road. So, I’ve been moving around, and then live on the road part time since 2017. Cort ran my story a few years ago: https://www.healthrising.org/blog/2018/06/02/tks-big-adventure-an-me-cfs-cross-country-trip/
Thank you for this. Wishing you safe and good travels and wishing you well.
This happens to me regularly on a much more subtle level. It’s like the body tightens up it’s cell energy production.
Very wierd.
Perhaps related, I hear that Ron Davies started waking Whitney earlier to avoid autoimmunity kicking in.
That’s a very vague recollection I have tho
Oh wow! Reading this was timely. I’ve been suffering from insomnia for couple of weeks. Un-refreshing sleep, as we all know, is an me/cfs problem along with all the rest – but this was/is different. I’ve had me/cfs for longer but less severely than Martin. Poor sleep has been an issue but not actual insomnia. Currently, after falling asleep for about an hour, I’ve woken, fully alert, and stayed that way till morning. My head remains clear through those wide-awake hours and I feel completely well. Bliss! As the day goes on, my ‘normal’ returns.
I have been disgnosed with ME in 2012. I took the shot H1N1 and it triggered this illness, I am disabled enough to quit my work, not having a social life, being in bed many days in a row, everything I do is a big effort. In 2019, at Christmas someone offered me some cocaine, I took it, and wow! I felt like myself, not sick at all. I told the story to my infectiologist and he decides to precribe me Adderal which is amphetamins. It gives me quiet the same effect than cocaine. I functioned with that until the Spring 2023 and stopped. I was feeling great even without his medication. I felt alright for about 5-6 months, but it was hard for me to have a normal life since I was sick for so long, I didn’t have any confidence in my new physical energy, always thinking it may not last. That’s what happened, now I’m back on amphetamins, and even with that now, I need to keep a good accounting of my energy spending. All the months I was well, I had stopped the antidepressant I was taking for years. I don’t know if this is the cause of my feeling better, I had to go back on antidepressants because I was taking it for many years. So, I felt well for 5-6 months but I began the antidepressants again after 2-3 months without them, I was feeling very anxious and very tired. Having done that, I continue to feel better for another 2-3 months, I tought that God had cured me. Now, since last Fall, the ME came back. I couldn’t understand why. My actual state is worst than ever, since I don’t find any doctors who know this Syndrome, I’m on myself. My generalist doctor told me tonight on the phone that I should exercise, you see how much he knows about ME. I’m in Quebec, Canada. I would need to go to another province to find a specialist of ME, of course, I’m all alone and don’t have the strength to do that. As for my remission of 6 months, the only thing I’d change was taking dietary supplements, especially the ones to give a boost at my mitochondria. I’m taking them again, I think it helps a little. In fact, I’m more surviving than living. If something happens again, I will keep in touch with you. We need to pray our Lord with faith and try to stay joyful.
I have experienced more energy,than any other time, with less than optimal sleep provided I have a nap the next day. After the nap I feel better than if I’d had 10hours sleep.
I have to wake up early a couple of times a week and this has happened often enough for me to wonder what is going on here. I’m mainly housebound.
Better without sleep.is a long standing pattern of cfs people
It’s been well noticed over the years.
I say it’s hormonal.
I’m always at my cfs best with heavy jet lag.
The cortisol response seems to dampen our energy.
I recently completed whole genome sequencing with sequencing.com. I already had previous diagnoses of lupus, Graves, Crohns, intracranial hypertension, Classic EDS and myasthenia gravis before any genetic testing. I always have chronic fatigue and muscle pain/loss of strength. I was surprised to find several gene mutations for Charcot-Marie-Tooth syndrome type 2A1(and others) and mitochondrial dysfunction and this would explain a lot and I’ll be getting this further evaluated. I would recommend genetic testing. It’s been enlightening. I think we need to consider genetic testing as part of our overall healthcare profile, especially for complicated patients like myself or ME/CFS.
do you feel like sharing what company test you took?
sequencing.com
Possibly, sleep deprivation has had a positive effect.
According to Dr. K. Buteyko (a Ukrainian doctor from the 20th century), many chronic diseases are the result of chronic over-breathing. (You usually don’t notice this yourself.) With his breathing therapy, he has helped many people on the path to recovery.
For more information on CFS/ME and chronic hyperventilation, see:
https://www.healthrising.org/blog/2022/03/10/hypocapnia-chronic-fatigue-syndrome-pots/
Chronic hyperventilation is often at its worst during the night due to the lying position. Even if someone’s breathing is normal during the day, nighttime hyperventilation can prevent recovery and sustain the ilness.
For further information: https://www.normalbreathing.com/pr-deception-best-sleeping-positions/
Hyperventilation reduces intracranial pressure (intracranial blood flow and blood volume) by vasoconstriction, so I suspect the body is driving it on purpose to control ICP. I believe this is the mechanism behind the POTS-like symptoms.
Indeed, the body is intentionally doing this. Dr. Perikles Simon explains that hyperventilation is a response to a problem with blood circulation.
https://www.healthrising.org/blog/2024/06/21/anaerobic-exercise-long-covid-chronic-fatigue-oxygen/
I don’t know if this is at all relevant but having had ME/CFS for 20 years and 5 years moderate to severe, I started perimenopausal symptoms and had a few nights with disrupted sleep (5 hours compared to normal 7-8 hours) and hot flushes. After those nights, I had significantly more energy than normal – walking 200meters compared to about 20meters. I think that it was the hot flushes rather than the lack of sleep that gave me the energy boost. Poor sleep doesn’t normally help me but hot flushes during labour (childbirth) gave a similar and even more dramatic effect years before.
Anna, you may have heard of Mast Cell Activation Syndrome. High levels of estrogen can increase symptoms, and (peri-)menopause often brings improvement in women with that syndrome. Perhaps discuss this with your doctor. Good luck!
Thank you very much for your comment. I’d heard of MCAS but never considered i could have it. I will look in more depth. And I’ve just got a doctor that I could discuss things with now!
Do we know which sleep medication he was switched to before he had the temporary remission?
Psychotropic medications can also have an affect on the gut microbiome…..
Hmmmm
I have some basic differences in that I am female and my CFS was mild when diagnosed in 1997, so my periods of being in bed were on weekends for the most part. I no longer would qualify for a CFS diagnosis or for a fibromyalgia diagnosis from a purely symptomatic standpoint, however, I think these are chronic conditions and being therefore, it’s always about management. I’ve seen multiple family members with these diagnoses and/or symptoms and see it as having a genetic basis. The temptation when I feel really really good is to get very optimistic and set goals a bit too high. Reality can bite. That said, I work very hard to stay out of the doctor’s office and do a pretty good job in that respect. Over the years, I have seen some fantastic doctors who have been crucial in my progress, so that is not to minimize the value of great physicians and therapists. So many can and do help in countless ways. I have a short video of my recovery journey if anybody is interested.
I sometimes experience a Sudden burst of euphoria along with complete sleeplessness and 10 times more energy than I had before the sleeplessness started. With me, it tends to be linked to spikes in certain hormones (ovulation) and can last for days. After about 3 days of massively increased physical and mental energy, I start to feel ill from lack of sleep, but if I’m careful about resting, I can stay on this new energetic plateau for weeks. It usually comes to an end of I catch a cold, when it’s down the snake and back to square one, which for me means difficulty talking, chewing, walking, thinking and remembering. This has happened to me quite a few times. It takes me 6-8 weeks to get to the point of walking round the house, thinking straight and having a 10 minute conversation. The most annoying thing about it is that I then always lose whatever muscular strength I’ve built up. It doesn’t happen every month or even regularly.
Benzodiazepines could be the culprit
Look at research by Heather Ashton
https://www.benzoinfo.com/ashtonmanual/
I’ wondering if this could have something to do with adjusting or following our individual circadian rhythms?
Interestingly, I have had similar experience with occasional periods of sleep deprivation actually improving my symptoms. And my friends and family joke that they need to make sure not to keep me up past 11 p.m. or I will get a “second wind” keep them up til 2:00 a.m. Otherwise, I am mostly housebound with profound fatigue, brain fog, pain and weakness during the day. As some others have mentioned, I also get a burst of energy around 4 p.m. and am usually wide awake between 3-5 a.m.
However, recently, I had to travel to Spain for my daughter’s wedding and was expecting significant worsening of my symptoms especially with jet lag, time change and all the additional activity. Amazingly, I felt better than I had in years. Some of this I attributed to happiness and seeing loved ones, but I also think it had something to do with some sleep deprivation initially followed by changes that were more in-sync with my natural circadian rhythms. I have always been more comfortable being a night owl and when I’ve needed to change to more of an early bird schedule, my symptoms are worse and I don’t sleep as well. However, while following the different lifestyle in Spain, with later awakening, rest break in mid-afternoon, and then dinner and other activities much later at night (plus the extended daylight), it felt so natural and I kept thinking that I almost feel “normal” despite all the changes and activity. This lasted the entire 10 days I was there. However, shortly after returning to US, I did have a significant crash and still have been unable to return back to my typical baseline. This is making me think I really should try to listen more to my own circadian rhythms rather than try to change them to fit the American lifestyle. Not that it is a cure, but any improvement in symptoms would be welcomed by so many of us.
Any thoughts on this?
I have no idea if this could be a factor, but I have a friend who always felt amazing when she traveled and she eventually realized it was that wheat in other countries is different. She cut gluten at home and feels much improved and only eats bread and pasta in European countries now. She also has EDS. So maybe it’s a mast cell thing for her? I hope this is helpful. But I have absolutely shifted my own life to what works for me, not what we’re told should be our schedule. I wish I had listened to my body sooner.
I have found that on the rare occasions I experience acute extreme rage my body reacts with a massive flood of “fight” chemicals/hormones and a couple weeks of greatly improved function. I think my body perceives great threat and overcomes the stuck switches and connections to address the threat. My rage usually occurs when I am in a particularly helpless stage and confronted with ignorance and dismissal by medical professionals. The rage and flood of chemicals is very unpleasant to experience and frightens my family. Usually I go to the garage and pound a mallet against the workbench and scream until it passes. Then I have a lovely couple of weeks as the effects gradually fade and I am back to being housebound, moving from resting spot to resting spot.
I am not a scientist and can only report my experience. Maybe some of you can figure out why this happens.
Regarding Martin, perhaps his extreme sleep deprivation triggered the same kind of responses.
is there any chance your increased energy level after anger might be related to manic depressive episodes?
No, I am not bipolar. After 27 years of dealing with medical “professionals” who have no knowledge, little interest in developing their skills, and basic inhumanity, I get angry. Angry is better than hopeless and helpless, and wishing I were dead, which I usually experience before I get angry. I do believe that when my emotional state reaches a level dangerous to my survival, my body triggers whatever process is needed to release the stuck energy pathways. The body’s primary purpose is to survive. I believe the body can override the ME/CFS dysfunction when needs must. Martin felt he was in dying, and he got temporary relief. Another woman wrote in whose husband died and she needn’t to bring his affairs to a close. I’m sure she felt she was in dire straits and she got relief long enough to accomplish that. I think the interplay of emotions with ME/CFS is interesting. I usually manage my life so I can keep a relatively even emotional keel because excesses deplete me. But every once in a while I get a huge excess which causes wonderful relief. Do other people experience this?
that is awesome that you get relief, I am sorry that you have to experience such anger to get relief, but, yes, better than the alternative.
For me, when i get angry, it makes me have even less energy, so even the feeling of anger is frustrating for me as i know it will lead to less energy for me.
I would be interested in a study that looked at p/w ME/CFS (moderate to moderate-severe) who unintentionally suddenly experienced a drastic context change. (i.e They instantly fall in love with the person who is delivering them their massive Lotto check on the same day a major Hollywood studio buys their script moments after they have had their first vision of God.)
I had a doctor once suggest that the best thing for me would be to be put in a coma for an extended period of time. (The idea being to “break context.”)
Context change is not to suggest that the illness is psychological, rather that it could create a major chemical/neurotransmitter shift.
So this got me to reading some sleep deprivation studies with depression..thinking a similar mechanism is involved. One thing I found is that it causes more dopamine release. Me/cfs is known to associate with low dopamine. Low dose abilify is thought to help so many people due to dopamine (which tames neuro inflammation). Perhaps look into ways to increase dopamine?
As one neural orthopedic surgeon stated “this is a look down world”cell phones, tablets, e-readers, books, work desk and etc, etc. after accidentally discovering that if I kept my head up and slightly to the left, after a period of time (hours) I would feel better (this is not 100%). This is because there is some compression on my left Jugular vain when my head is not in The Sweet spot. I can only sleep on one side so that the pillow holds my head in The Sweet spot. Remembering back, whenever I felt bad I would do a lot of reading and this would occur with the book or tablet in a lower position, thus looking down. Morning was worse in the past because my sleeping position did not keep my head in The Sweet spot.
Fascinating. I’m so sorry for Martin that this hasn’t been a permanent remission.
I always feel more energetic when sleep deprived — but I can only handle being in that state for a few days and the payback is always bad. And as you said I know it’s very true in depression, when I was depressed and had anxiety my brain would totally clear after sleep deprivation and I’d suddenly feel normal again. But it only lasted until the next sleep.
I’ve had relatively acute episodes of feeling 80-90% better on a given day and almost invariably could tie them back to how deeply I slept the night before. Rarely did the “recovery” last for more than a day or so unfortunately. This has been such a consistent observation that it’s biased me into believing that the quality of sleep, not the quantity, is a critical underlying factor in MY ME/CSF (just an observation). That said, I’m sure Martin must have had an MRI of his brain to check for a tumor or other lesion(s). If not, I’d highly recommend it. Cranio-cervical instability is also worth considering.
I have had a number of remissions. The first came when I started to eat really unhealthy because of a stressful job. It could be the increased sodium. That was in 1989 and lasted until about 2000.
In 2008 I became disabled due to overextending, and could no longer work.
My second remission lasted about 4 months due to GcMAF. That was around 2011.
My third and final very powerful remission came in 2020 after I got shingles (a Herpes virus just like EBV, HHV6). That lasted about 5 months. My guess is fighting the Shingles lowered my EBV and HHV6 load.
Lots of spam on this thread… I don’t suppose you could add in a ‘report’ button Cort? Will be annoying if they make a habit of this
We changed our spam blocker after our last – and very good one – went up in price. This one is not doing well.
The Curious Story of Tamiflu
Our daughter was a teacher in Maui who has been diagnosed with ME/CFS and was positive for HHV6A. In 2020, she was exposed to many young children with flu and/or upper respiratory infections. She was sick with an upper respiratory infection one week out of every month since the school started that August. On two occasions, her physicians at Kaiser prescribed Tamiflu and both times by the fourth day most of her other symptoms of ME/CFS were resolved. These included fatigue, pain in the back and legs, head and sinus pain, blurry vision, memory and balance problems. As soon as the prescription ran out, these symptoms all came back.
We looked for other cases that had similar remission of symptoms of ME/CFS with Tamiflu.
This case was reported on the internet:
March 17, 2017
” The doctor who diagnosed the influenza immediately put me on Tamiflu, which I took for ten days. I honestly felt better on Tamiflu than I have in years. By day three of the Tamiflu course, after being bedridden and sick with very high fever and some of the worst body pain I’ve ever experienced, I was full of energy and strength. I did things that haven’t been possible for me for years, like take down and pack up the Christmas tree and lift the entire thing and haul it out to the street alone. I traveled across the country alone with my daughter and felt fine the next day, even energetic the same day I got home, unpacking and doing more chores. I even wanted to exercise. This level of physical exertion would normally have me, at best, resting for a few days to recover. More than likely they would result in a full week of pain and exhaustion before finally returning to “normal bad”. I was wondering how Tamiflu might fight in your model? Or, if you think that its effects aren’t microbiome related, that I may see more health gains by pursuing and possibly even rotating antivirals.”
January 2020
Cort Johnson from Health Rising, a ME/CFS information center online reported to us that Dr. John Chia had treated a young man with Tamiflu and that he was so much improved, he was starting an exercise program.
May 1, 2018
Phoenix Rising
Post on web site.
Hi,
I have come across someone who is mostly housebound and at times bed bound who has seen profound improvement on Tamiflu. I’m wondering has anyone else been prescribed this and experienced improvement in ME symptoms?
EO.
December 12/2019
In answer to an email we sent to the Open Medicine Foundation about our daughter’s experience with Tamiflu.
Hi Betty,
Yes we’ve heard this about Tamiflu. It is quite interesting though we don’t know how or why.
Excellent information, thank you.
Chris
How Could Tamiflu Be Working
Although Tamiflu is best known as an antiviral that inhibits the enzyme neurominidase in patients infected with the flu, it also has inhibitory effects on certain bacteria and mycoplasma.
There are two possibilities we have found.
Flu remedies help combat E. coli bacteria
https://www.sciencedaily.com/releases/2015/08/150825103124.htm
Tamiflu could be inhibiting pathogenic mycoplasma by interfering with the enzyme neurominidase.
According to Professor Garth Nicolson from the Institute for Molecular Medicine,
certain mycoplasma also have the enzyme neurominidase.
In veterinary medicine, Tamiflu (oseltamivir) has been used for dogs infected with the parovirus https://veterinarypartner.vin.com/default.aspx?pid=19239&id=4952180
”Because the parvovirus does not use neuraminidase in its replication, one might not expect oseltamivir to have value but it turns out that neuraminidase is an important enzyme used by pathogenic bacteria invading through the protective mucous barrier of the GI tract. This invasion through the mucous barrier is biochemically similar to the budding of virus from the cell membrane and oseltamivir is able to inhibit it.”
Our daughter is on her third round of Tamiflu and and has kept a diary of her improvement for each day and the return of symptoms when she runs out of Tamiflu.
Tamiflu was originally made from star anise, a herb/spice used in Asian cooking and medicine. It has activity against viruses, fungi and bacteria. Because star anise became in short supply during past flu seasons, Tamiflu is now made synthetically.
Tamiflu has been given for up to six weeks to prevent flu in elderly populations. https://pubmed.ncbi.nlm.nih.gov/11555062/
Unfortunately, it is hard to get a doctor to prescribe more than 10 days of Tamiflu. There have been plans, however, to put it on the over-the-counter market.
Our daughter believes that a longer trial of Tamiflu could put her symptoms into a more permanent remission.
I would suspect intracranial hypertension with those symptoms. I haven’t researched Tamiflu specifically but many medicines can affect pressure.
I have had CFS/fibro since the early 90s. When I got Covid in June of 2022, I realized about two months into it (yes, I’m a long hauler) that, although I had new symptoms, the old fibro sore spots were no longer sore. It was a very strange experience and somehow I knew the change would probably not last. As I got into month 5, the fibro pains began to come back. Now I feel bruised and battered again, along with the lingering fatigue and other issues of long covid. Anyone else have that experience?
I’m curious about Martin’s endocrine levels, specifically during the remission and afterwards. Were both melatonin and cortisol levels studied during these windows?
In a clinical trial that I conducted some years ago we studied international flight attendants, many of whom were chronically sleep deprived. Indeed, many were getting only two or three hours of sleep per night periodically. (This aspect of FA health was not a specific focus of the study.) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5318411/
While not reported in the publication, melatonin levels were very low and cortisol levels did not fit clinical norms. Despite these abnormal levels, all of the women in the study were functional in terms of their jobs and lives in general.
I’m wondering if Martin’s spate of sleep deprivation could have somehow induced a change in his melatonin levels.
Interestingly, melatonin has been found to be produced by mitochondria in all parts of the body, not just the pineal gland as was thought in earlier times. It plays a role in both mitochondrial fusion and biogenesis. Melatonin, beyond its role in supporting sleep, is also a powerful antioxidant. https://doi.org/10.1016/j.lfs.2022.120612
Since mitochondrial dysfunction is hypothesized to be involved in Long COVID and other post viral syndromes, perhaps there is a connections.
Mitochondrial dysfunction in ME/CFS is actually a key research question for a long time. Therefore no one here thinks it’s exciting that Long Covid researchers who haven’t informed themselves about the state of research in ME/CFS come up with the idea that mitochondrial dysfunction is a prolem in Long Covid. In German we call such an information “cold coffee”.
The best evidence that we have so far (from small studies) is that mRNA that is produced in the beginning of HHV-6b smoldering reactivation in ME/CFS paralyses and damages the mitochondria.
The British ME Association published an overview of the research findings into the mitochondria in ME/CFS in 2019:
https://meassociation.org.uk/2019/07/mea-summary-review-the-role-of-mitochondria-in-me-cfs-13-july-2019/
Then in 2020 Bhupesh Prusty and colleagues published their article on mRNA in herpesreactivation:
https://pubmed.ncbi.nlm.nih.gov/32327453/
that seems just to be the missing piece of the puzzle as described in the review of 2019.
Maybe you have heard of the psychological phenomena that people who have little understanding of a subject think that they understand the subject better than the people who have done decades of research into the problem.
The reason is that the people in the first group due to their ignorance also lack an understanding of the depths of the field. This is a huge problem with people who think they didn’t need to consider ME/CFS results when they started researching “Long Covid”. And way too much money is thrown out of the window in LC research simply because either the suppression of the existence of ME/CFS or the dismissal of the corresponding research successes.
Greetings Lina,
You are reinforcing many of the topics that I write about on a regular basis.
By way of background, I’m a scientist who had COVID and then LC. As I have recovered, I’ve been sharing my insights to a wide audience that includes patients and professionals.
In the US, virally-inducted mitochondrial dysfunction has largely been ignored by NIH and the CDC especially with respect to COVID and LC. One of my recent posts is focused on this topic. I’d love to get your feedback. https://longcovidjourney2wellness.substack.com/p/tackling-mitochondrial-dysfunction
A popular post that addresses mitochondrial dysfunction if called TLC for Mitochondria. Again, feedback would be appreciated. Subscriptions are free. https://longcovidjourney2wellness.substack.com/p/long-covid-tlc-for-mitochondria
There’s a full list of my posts at this site: https://longcovidjourney2wellness.substack.com/
(previously posted this inaccurately)
Mardi, you write that you had long-covid and have recovered. It would be helpful to know what symptoms you had and what contributed to you ability to recover.
Thanks.
Hi Lise,
As mentioned in an earlier post here, I’ve been writing about this “Journey back to wellness” since 2022. I will try to be brief. There are more details in my Substack posts.
For me, COVID just merged into LC. It began in 03/20 as a respiratory infection with cough, fatigue, loss of smell, muscle aches, and then morphed into GI tract symptoms, ongoing acid reflux and diarrhea, brain fog and loss of some cognitive skills.
A colleague suggested that I look at my diet to help deal with the diarrhea and acid reflux. It was a key step in determining various sources of inflammation that were keeping me sick.
As a scientist I wanted to understand the disease so I dove into the literature and came to some conclusions. First I could see that many of the issues that some doctors were calling causes, were actually symptoms of LC. Second, all roads seemed to lead back to mitochondrial dysfunction (MD). Third, I recognized that inflammatory processes, irrespective of their cause, would need to be addressed in order to allow mitochondria to successfully engage in their innate repair processes.
Finally, I realized that this was going to be an ongoing process since MD is involved in many (perhaps most) chronic diseases and especially disease of aging.
I researched and found what nutrients mitochondria need to function optimally. I also thought about other sources of inflammation in the body including stress, environmental exposures, and foods that are pro-inflammatory. I lay out the basics in my post called TLC for mitochondria https://longcovidjourney2wellness.substack.com/p/long-covid-tlc-for-mitochondria. Subscriptions are free.
At this point it takes pretty significant stress to put me into a PEM state. My cognition is largely restored. I sleep soundly and wake up refreshed.
As I find new ways to improve my wellbeing, I share them. I hope that you can find the details that you are looking for. If not, just ask.
Kind regards,
Mardi
Thank you for this. Wishing you well.
It’s worth noting that deficit also dramatically increases dopamine levels in the brain and therefore encourages synaptic plasticity. It’s actually currently used as a treatment for treatment resistant depression. Dopamine has many functions in the body and brain so perhaps it affected something in a positive way.
Once again, not entirely on topic, but Cort, have you seen this?; https://onlinelibrary.wiley.com/doi/10.1002/advs.202302146
Labs that can identify ME/CFS. Not sure if anybody else dropped this link on your site…
Now on to my ‘on topic’ comment; I know this will sound rather airy fairy, but sometimes the body, under extreme stress, will do something mysterious to effect a kind of miraculous cure. I know because it happened to me. Not of ME/CFS but of a very severe flu like infection. I should have gone to the ER, but being young, alone, poor and uninsured I didn’t want to go in and get socked with a huge medical bill–even if I could have made it in–I was that sick.
I (stupidly) decided to ride it out, even though there was a possibility I could die. Then came the super vivid dreams, one each night over three days–mystical healing dreams. On the third day, my high fever broke and I rapidly returned to normal.
I know, for those who are very scientifically oriented, this can sound foo-foo, even to me. But the experience was so weird, so profound, that I still marvel and think there may be deep healing abilities hidden in the psyche that scientists don’t suspect. Until researchers can unravel what happened, call it ‘divine grace.’
I’ve had three remissions over the 6 years I’ve had ME/CFS: four weeks, three weeks, and most recently six weeks. My old energy returned, the orthostatic hypotension greatly improved, and my mind was less foggy. Then, for no reason I can figure out, I crashed again. Nothing changed in my supplements or diet. When I was in remission I could work in the garden, at my desk (I’m a writer), and stay up watching movies. Now I can barely walk from one room to another without fainting, have serious short term memory problems and am exhausted all the time. I wish I could understand the subtleties of this discussion. I visit this site all the time to see if there’s any news of a cure. My life is passing and I’m not in it.
A healing from the Holy Spirit perhaps. Sing HU with love in your heart for your creator who loves you very much and unconditionally💙
Singing HU can soothe you, heal you and bring you peace.
May the blessings be 💙💙💙
Hey @Cort,
many people pinpointed me towards this blog telling there is a story about me.
If it’s truly is, then please reach out for a good journalistic interview. There are so many things that you’ve gotten wrong – if it’s me, if not forgive me – so I don’t think anyone can make something useful with these information.
If it’s something else, please ignore this comment?
I don’t not know why Martin (paused_me) is posting this. This is not the email address of the Martin whose story was posted. That Martin provided his information to me, asked me to produce a blog, and was quickly made aware of it. He said this: “”Blog is amazing – thank you so much again for your work!!”
citing Martin himself:
“Statement: Cort has never reached out to me for an interview.
Please: I don’t get better by sleep deprivation!!! There other things that are wrong too, including drugs.
If someone could reach out to him: we have to talk”
I don’t not know why Martin (paused_me) is posting this. This is not the email address of the Martin whose story was posted. That Martin provided his information to me, asked me to produce a blog, and was quickly made aware of it. He said this: “”Blog is amazing – thank you so much again for your work!!”
Then – as I anticipated before – it was a misunderstanding and my deepest apologies
perfect, then this was a misunderstanding. thank you for sorting that out. he reached out himself (see comment above) and hadn’t received an answer yet. your clarification is helpful, now he can inform the people contacting him over this story that it is not about him.
thank you Cort, best wishes!
My sincere apologies! People said it was about me. I would have reached out to you personally. My mistake.
I am sorry. I have made publicly known that this was a mistake.
Thanks! Appreciate it! 🙂
Martin may have had akathesia while or after cessation of his psych meds.
Have you ever looked into low sleep blood pressure? Most people’s blood pressure dips by about 10-15% while asleep. That’s normal and gives the heart a rest. But a small number of people are called extreme dippers where it falls over 20%. Mine dips between 25-30% and had caused almost symptom you mentioned.
I too had this very thing! I was diagnosed with long covid in January 2022. Bedridden for a year and a half I suddenly woke one morning feeling completely “normal”. I stood in my room by my bedside crying with joy. For the next three weeks it lasted until the symptoms slowly started to reveal themselves again and inside have not been able to get back to that state of what I could only explain as euphoria. I long for it to come back. I have no clue what changes happened to my body to go from a state of “slowly dying” to completely “healthy” but I continue everyday to trust that it will return.
I have had a few episodes over the past 10 years, lasting 60 minutes each, where all of a sudden I had NO symptoms. And then the symptoms came back. No idea why.
I should have also said that when I had those brief episodes of no symptoms, they did not occur after sleeping. I always feel much worse when I wake up, than when Inwent to sleep.