Lots of areas of the brain (prefrontal cortex, anterior cingulate cortex, insula, amygdala, motor cortex, and more) have been implicated in chronic fatigue syndrome (ME/CFS), but somehow it fits that the most difficult-to-reach and hard-to-study part of the brain – the brainstem – might just be the cat’s meow.
The little brainstem controls a variety of core processes – many of which have been disrupted in ME/CFS and long COVID.
As Van Elzakker pointed out in his fine-tuned review of the brainstem in ME/CFS, most MRI studies that focus on the upper part of the brain can only really catch a glimpse at what’s happening down in the brainstem.
The little brainstem – about the size of one’s thumb – is one of the most “primitive” parts of the brain (if you can call anything in the brain “primitive”). It controls many of the involuntary aspects of our physiology – you know, little things like breathing, sleeping, eating, and pain sensitivity. When we exercise, it’s our brainstem that senses the amount of carbon dioxide present and has us breathe faster to remove it – and speeds up the flow of oxygen to our muscles. The brainstem also relays messages traveling up and down the spinal cord. Through its reticular activating system (RAS), it controls how alert and aware we are, and is an important source of the major brain neurotransmitters dopamine, norepinephrine, and serotonin. It’s easy to see how it could be ground zero for these diseases.
Researchers have proposed that everything from viral invasion, and inflammation, to blood vessel problems could be causing the brainstem to throw off some pretty core physiological processes in these diseases. Indeed, if any disease affects really core physiological processes – you know the kind that really affect functioning – one would think it would be diseases like ME/CFS and long COVID.
Fibromyalgia
Let’s not leave out fibromyalgia, though. Problems in the parabrachial nucleus (PBN) of the brainstem have been linked to increased pain sensitivity and a recent FM study found alterations in connectivity between the PBN and other parts of the brain.
One review called the PBN “a ‘hub’ for pain and aversion” that responds to any potentially dangerous situation. Not surprisingly, PBN neurons have been associated with the “freeze response”. One researcher likened the PBN to a home alarm:
“The alarm goes off while you’re away, and you don’t know if it’s a broken window, an intruder, or a fire—you just know that something bad has happened.”
Interestingly, given the possibility produced by Bob Naviaux that people with chronic fatigue may exist in a kind of hibernation-like metabolic state, the vast convergence of different sensory inputs (cardiovascular, respiratory, metabolic, and pain) at the PBN appears to give it a key role in determining whether an organism enters into hibernation.
Long COVID
The evidence of brainstem dysfunction in long COVID has slowly been growing. In “The Vagal Autonomic Pathway of COVID-19 at the Crossroad of Alzheimer’s Disease and Aging: A Review of Knowledge“, French researchers report that the SARS-CoV-2 coronavirus has a predilection for nestling itself within the vagus nerve, then moving from there into the dorsal vagal center of the brainstem – an “integrative center” that regulates both respiration and inflammation.
One paper stated that “overwhelming evidence” linked acute respiratory failure in COVID-19 to viral entry into the brainstem. A Malaysian researcher proposed that long COVID is caused by a “persistent, low-grade brainstem dysfunction” driven by a viral invasion of the brainstem. He stated:
“Notably, long-COVID resembles and is closely associated with myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS)… Interestingly, brain imaging research has found that symptom severity of ME/CFS associates and correlates with brainstem dysfunction, particularly at the reticular activating system (RAS).”
The virus apparently produces a “neurogenic switch” that causes, among other things, hypoventilation – which has been found in abundance in ME/CFS. Plus, it’s possible that viral entry into the brainstem is also causing increased sympathetic (“fight or flight”) activation and decreased parasympathetic (“rest and digest”) activation – exactly what is found in ME/CFS and fibromyalgia (FM).
What other viruses can invade the brainstem? There’s no evidence that it has in ME/CFS, but Epstein-Barr virus can as well.
Chronic Fatigue Syndrome (ME/CFS)
People with ME/CFS who have craniocervical instability (CCI) have given us a vivid display of what a tweaked brainstem can produce. Lax ligaments that allow the skull to settle onto the brainstem were able to produce virtually every symptom associated with ME/CFS.
Thus far, ME/CFS studies have been able to associate some symptom severity with brainstem issues. One study found a “communication breakdown” between different parts of the brainstem as well as with other parts of the brain that Barden believed could produce problems with movement, maintaining movement, sleep quality, autonomic functioning, remaining alert, and cognition.
Another found white matter loss that seemed to be associated with reduced autonomic nervous system functioning and could impair motor and cognitive activities: i.e. movement and thinking. A third found widespread issues associated, again, with autonomic nervous system functioning; plus, a fourth study found microstructural issues in the brainstem.
The Gist
- One of the most “primitive” parts of the brain, the little brainstem at the base of the brain, controls many of the involuntary aspects of our physiology – you know, little things like breathing, sleeping, alertness, eating, and pain sensitivity. When we exercise, it’s our brainstem that senses the amount of carbon dioxide present and has us breathe faster to remove it – and speeds up the flow of oxygen to our muscles.
- The fact that it affects such core processes makes it of real interest in ME/CFS. Recent studies suggest that brainstem dysfunction in the parabrachial nucleus (PBN) may be present in fibromyalgia as well. One review called the PBN “a ‘hub’ for pain and aversion” that responds to any potentially dangerous situation.
- With regard to long COVID, the coronavirus apparently has a predilection for nestling in the brainstem, and one researcher has proposed that long COVID is caused by a “persistent, low-grade brainstem dysfunction” driven by a viral invasion of the brainstem.
- Through a series of studies, an Australian team has found problems with “communication” inside and outside the brainstem, microstructural changes, and white matter changes that appeared to affect symptoms as well as autonomic nervous system functioning in ME/CFS.
- Their latest study employed the most powerful MRI in the world – a Tesla 7 – to assess the volume of the brainstem and its different regions in a small number of ME/CFS and long-COVID patients and healthy controls.
- The study found increased volume of the brainstem as a whole and in several regions of it in both ME/CFS and long-COVID patients but not in the healthy controls. It was only, however, able to link only one symptom – pain – to increased brainstem volume. (Shortness of breath was associated with reduced volumes of the midbrain.)
- Larger is not better with the brainstem. A larger brainstem suggests that inflammation and/or viral invasion has occurred. Interestingly, studies indicate that inflammation outside the brainstem can end up producing inflammation inside it – suggesting that taming inflammation, say, in the gut, might be able to reduce inflammation in the brainstem itself.
- This study does three things. One, it links ME/CFS and long COVID ever more closely together. We can add increased brainstem volume to the long list of similar findings (EBV reactivation, invasive CPET abnormalities, low heart rate variability, small fiber neuropathy, gut flora alteration, blood vessel issues, hypercoagulation, dysautonomia) in these diseases.
- Two, this study and past studies have been too small to definitively tell us if the brainstem is playing a major role in ME/CFS. Now we need larger studies that can tell definitively us if this intriguing part of the body really does play a major role in these diseases.
- Lastly, this study puts a focus on viruses (EBV can infect the brainstem) and on inflammation and ways to tame it.
The Study
This study, “Brainstem volume changes in myalgic encephalomyelitis/chronic fatigue syndrome and long COVID patients”, used the most powerful MRI in the world – a Tesla 7 – to investigate brainstem issues in ME/CFS. The 7 is quite the evolutionary leap. Weighing in at 25 tons, it provides more than double the strength and clarity of past MRIs. Researchers at Brigham and Women’s Hospital at Harvard went gaga when they got one. They planned to quickly put their new baby (which required a crane to put it into the building) to use on the brain, stating that “it will allow clinicians to visualize critical structures and pathologies of the brain that until now were not visible.”
Thapaliya and Barnden used the Tesla 7 to assess the volumes of the different subregions of the brainstem, as well as in the brainstem as a whole, in people with ME/CFS (10), long COVID (8) and in healthy controls (10). They also sought to see if they were associated with any symptoms.
Results
When Larger Isn’t Better…
The study found significantly larger volumes of the pons, the superior cerebellar peduncle (SCP), and the whole brainstem in both long-COVID and ME/CFS patients. As these help to make up the reticular activation system (RAS), the authors cited the effects these larger volumes could be having on attention, sensory perception, problem-solving, memory, wake/sleep cycles, pain, breathing and even walking (gait). Ultimately, they stated these changes “could result in severe and varied deficits in brain function”. (Severe and varied – sounds like ME/CFS and long COVID…)
Larger brainstem volumes were associated with more pain – a finding that made sense given a recent finding in fibromyalgia. Plus, smaller midbrain volumes were associated with more severe breathing issues. Note, though, that despite assessing a variety of symptoms, as well as using the SF-36 functional capacity tool, no other symptoms or associations with reduced functional capacity were found.
The larger brainstem volumes could be caused by inflammation or viral invasion. The inflammation can even be sparked by outside the brainstem (like maybe the gut) – which is encouraging, as removing that inflammation should allow the brainstem to calm down. This brings us back to Yong’s long-COVID hypothesis paper. Yong noted that because brainstem issues causing severe damage to the brainstem are usually associated with life-threatening outcomes, researchers don’t really consider what lesser amounts of damage could cause.
Yong reports, though, that brainstem issues have been associated with musculoskeletal pain, migraines, and, of course, ME/CFS. He proposes that “persistent, low-grade brainstem dysfunction” could be behind long COVID and ME/CFS.
Conclusion
Welcome to the club! Brainstem abnormalities now join the list of other issues (EBV reactivation, CPET abnormalities, small fiber neuropathy, dysautonomia, low cortisol, symptoms, etc.) that are linking ME/CFS and long COVID together ever more tightly.
The brainstem is of so much interest because it could conceivably account for so many problems in these. We know this because of what the brainstem is involved in but also because some ME/CFS patients with brainstem problems (aka craniocervical instability) recovered when their brainstem problems were resolved. Despite this, perhaps because it was so small, this study was only able to link two symptoms (pain, and problems breathing) with its findings.
All the ME/CFS brainstem studies are small and they’re all finding issues of different sorts. Because of their size, though, none could be called definitive. They’re more pointing to possible problems than anything else. Now that a bevy of studies have found a host of different problems in this most interesting part of the brain, let’s hope we’ll see some big studies in long COVID and/or ME/CFS that will tell us if the brainstem has been kind of teasing us all along or if it’s the real deal.
Thank you so much again for your excellent report Cort! This website keeps me informed and that is key. Information to me, is hope. Without hope there’s no point. I’ve been sick for almost 16 years now and am approaching my 30th birthday. ME/CFS, neuroborreliosis, hEDS, FM, POTS/OI, dysautonomia, CCI/AAI, Epstein-Barr, IBS – I can play cards with my diagnoses as many of us can (I’m sure I forgot a few). It somehow all ties together, but how? I do feel like we are getting closer, especially with the unfortunate new group: Long Covid. Hang in there everyone, I’ve never been as hopeful that science will bring us closer to some real answers as I am now!
I wonder if the brainstem theory is involved with fibromyalgia. I have both FM and ME but so many people I new in our support group were diagnosed with FM.
Yes, several studies suggest the brainstem may be involved in fibromyalgia as well.
Cort does a great job writing, referring to the key concepts, key authors, and new studies. Luckily the stiffness of the brainstem is easily palpable, it can be unilateral or bilateral. It can be cleared in a couple of treatments after unclogging the BBB fenestrations with a little budesonide and cranial massage. The bigger problem structurally is the demyelination of the cerebellar peduncles and cerebellum which actually carry much much more weight of the brain. Clogged lymphatics at the occipital base distort the left and right occiput and start the massive myelin meltdown of ‘true’ M.E. which degrades the cervical ligaments from the outside while the cerebellum collapses and the brain sags posterior to the brainstem.
Wow… do you have any suggestions how to help? I have trouble with oxygen hunger… pots severe cfs chemical sensitivity etc
Sick over 40 years…
Yes I would love to hear more about it as well! I also have SEVERE air hunger sometimes and every time I get it, it always lasts a couple of days and is extremely severe, do you or does anyone else reading my comment have any suggestions on how to ease the symptoms or completely get rid of it?
I started hyperbaric oxygen therapy (HBOT) over 12 months ago, and I swear it has kept me alive. I am extremely lucky to live close to a ‘wellness’ clinic that provides this service, but it’s not exactly cheap.
There have already been a few studies on the effects of HBOT on fibromyalgia and long Covid (eg. Shai Efrati – University of Tel Aviv).
I’ve had LC since late 2020 – the worst symptom by far has been the dysregulated breathing/hypoventilation. I felt like I was drowning every minute of every day, but my O2 stats were always ‘normal’.
I started HBOT treatment in early 2022 – by that stage I had developed constant suicidal ideation (sympathetic overdrive). Halfway through my first session I started crying from relief because it was the first time I felt I could breathe without effort in 18 months.
After my 2nd session I told the owner of the clinic that I had long Covid, and that at some point they might need to consider investing in another hyperbaric chamber because long Covid cases were going to increase.
They got another chamber.
Congratulations – and thanks for sharing your experience 🙂
So are you rubbing steroid…on the head somehow?
I would love to hear more. Are you a practitioner?
Hi Daniel Would you mind providing some sources for what you have put forward here, and I like others here are very interested in what this means and how it can be helped if you have practical ideas or treatments in mind. Many thanks, Steve
So, the study found 1) brain stem swelling in both MECFS and long COVID and 2) the size correlates to the pain. All other seems to be conjectures. Another possibility — in addition to gut, infection, etc — could be the stem enlargement from general brain inflammation caused by “diseased”, hyperactive immune cells.
As for CCI, I’ve heard reports that it causes brain fog by increasing intracranial pressure. I’ve been thinking that the same mechanism also causes all other MECFS symptoms in CCI cases. The CCI/MECFS falls into the category of what I call “MECFS with cause”, like undiagnosed chronic infection, poisoning, or chronic gut problem caused by diet. For each of them, we have reported cases of recovery when the underlying problem is resolved. Unfortunately, I think the vast majority of the MECFS cases are “MECFS without direct cause”, caused by hypersensitized immune cells, which is more like an allergy rather than infection.
I have had ME/CFS for over 2 decades. I have a multitude of other diagnoses including FQAD which is Fluoroquinolone Associated Disability. The medical professor who diagnosed me FQAD told me that CFS is not uncommon in people with FQAD and it is in my medical records that exposure to Fluoroquinones led to my ME/CFS diagnosis. Fluoroquinolones are a class of antibiotics widely prescribed from the late 1980s up until the present day although they carry a FDA Black Box warning and in the UK are supposedly to be prescribed as a last resort. FQs are in fact chemotherapy. I wonder how many people diagnosed with ME/CFS/Fibro were in fact ‘Floxed’ as we call it and are unaware of it? Adverse reactions to Fluoroquinolones are usually delayed so people don’t make the link between how awful they feel and the antibiotics they took months or even years earlier. This was me. And my GPs. And my Consultants. It took coming across a newspaper article to alert me to the dangers of FQ antibiotics, I got my medical records and subsequently my FQAD diagnosis. Those of us who realise what FQs did to us are only the tip of the iceberg. I’m in the UK FQ support group and many of us have an ME/CFS/Fibro diagnosis. It’s no coincidence.
@Lesley,
Until I read your comment I had no idea that Fluoroquinolone Associated Disability (FQAD) was a recognized condition. At first, in the past, this class of drugs was recognized for causing tendon rupture, then more and more warnings were added to the Black Box.
Before all these warnings, I took my first Ciprofloxin dose and then my eyes started rolling uncontrollably back and forth in my eye sockets. It happened at night and all I could think to do was call a pharmacist. He just told me to stop taking them–duh!
Now the ‘Box’ warns us of retinal detachment. Further reading says it is contraindicated in people with connective tissue disorders–like Ehlers-Danlos–which I have. So, even if you have not been diagnosed with EDS, if you are super flexible, perhaps you should think twice about taking this class of drugs and discuss alternatives with your doctor.
Yes and here is the USA they prescribe Fluoroquinolone of all different kinds as a MAIN antibiotic!!! Most the time CIPRO. I did lots of research on getting “floxxed” and the permanent disability a few years ago and I’m sure that millions have been permanently disabled because of them and have no clue at all!!! I myself got ME/CFS because I was vaccine injured at the end of 2016, although I’m not sure which exact vaccine it was because I had 5 of them and one was the 3 part Hep B series, all I know is there USE to be several Facebook groups for people who got vaccine injured and it caused their ME/CFS but now all of that stuff is COMPLETELY BANNED from ALL social media, like THOUSANDS of people got ME/CFS this way and I’m willing to bet there are thousands more BUT they simply don’t put 2 and 2 together and realize it. MOST all people that are vaccine injured have absolutely no clue because they don’t connect the dots and people think that to be “vaccine injured” that your disability had to be caused like the exact day you got the vaccine, but that’s not how it works!!! Anyways I’m glad you pointed out attention to being “floxxed” because it seems like nobody ever knows about it, and definitely I can guarantee nobody ever reads the pamphlets that come with any prescriptions or vaccines!!!!!!! I sure hope that more people start putting the puzzle pieces together for themselves and then stay the heck away from all of that stuff because of people do their actual research DEEPLY into it they will find that there is not a single safe vaccine on the market, that almost EVERY disease that the vaccine are made for were almost completely eradicated before the vaccine ever even came out, proving that peoples immune system was what got rid of the disease, that most vaccines are for sickness that if someone actually “caught” it’s actually only like having a cold or flu and the chances of death are extremely rare so basically there is no point taking a vaccine for it, then also research things like the fact that there is a bunch of crazy things like there has NEVER been a single study to find out how safe or dangerous it is for someone to get more than one vaccine at a time and crazy enough doctors do it all the time and they just give it to you in different limbs for example one in the arm one in the leg etc yet it’s never been tested what happens to the human body if given more than one in a day etc (definitely not), then most importantly EVERYONE should research the “1986 vaccine injury act” which was created in 1986 to completely give FULL IMMUNITY to all vaccine manufacturers because the vaccine manufacturers went to the government (FDA etc) and said they were not going to make vaccines at all anymore because they were all going broke paying off people and their families for permanently disabling and killing people so the government made a deal with them and offered all of them zero liability for every vaccine they make because that’s the only way any of the manufacturers would make anything anymore!!! We can ALL clearly see that our whole population is way sicker with lots more chronic diseases and disabilities and cancers than EVER BEFORE and it all makes complete sense if people would connet the puzzle pieces together, back in the day there wasn’t all this sickness, disability and cancers and things like autism was about 1 in 10,000 (but now 1 in 32 children) and if you look at the vaccine schedule and how it has INCREASED DRAMATICALLY over the last couple decades YOU CAN SEE why!!! Very interesting information is in the early 50’s people only got the DTP and smallpox, by age 2 they were only given a total of 5 shots and NEVER more than 1 on a single visit. Then in the mid-80’s by age 2 children were given DTP, MMR, polio given by mouth same thing by age 2 it was a total of 5 shots and never more than 1 shot at a single visit!!! NOW BY AGE 2 THEY ARE GIVEN 27 SHOTS AND UP TO 6 SHOTS IN A SINGLE VISIT!!! And this just keeps going up and up EVERY YEAR, by the way you can now add more than 27 because at 6 months old and then twice per year they want babies to get the covid shots, so add another 3 and make that 30 BY AGE 2!!! That’s literally INSANE!!! We are the most medically advanced and technology advanced…. EVER….. YET the population is the SICKEST it has EVER been!!! Especially the USA which has the highest rates of vaccines, with the most toxic ingredients out of almost all countries along with toxins and heavy metals in our food, water and air!!! Also the EPA and FDA etc has set EXTREMELY HIGH LEVELS for the total amount of each toxin they allow in all of our stuff and they haven’t updated STANDARDS on our drinking water in a couple DECADES, in fact the USA has the highest level of toxins in water than anywhere else for instance European countries have the cleanest water all of it is purified and available for free at kinda like “walk-up” water fountains where people fill water bottles and gallon jugs etc which is a normal thing over there. All I’m saying is we live in an EXTREMELY TOXIC environment and most people are completely unaware of these things because they don’t actually dig deep in research UNLESS they get extremely sick like I did and piece it all together, which by the way if you start to research these things you can do a comparison to see for yourself that it’s absolutely true Google hides the evidence and FACTS or puts it about 10 pages in whereas the search engine DuckDuckGo gives you links and proof to the real FACTS & TRUTH on the 1st page of search results!!! If you don’t believe me go test that out for yourself!!! There are lots of amazing websites like theTruthAboutVaccines that provide ALL the proof, evidence, scientific papers etc etc on there website with links to back up EVERY SINGLE THING THEY SAY, I pray that people go out and search for the truth and quit putting toxic things in their body and start doing daily detoxing to get out the unavoidable things out in our bodies daily. Wishing everyone well
Thank you Cort. Your research reviews are very helpful!
ME/CFE is likely caused by a neuro retrovirus, namely zenotropic Murine Leulemia Virus-like Virus (XMRV), Dittos for Autistic spectrum disorder.
The pathogenesis of both are vaccinations that, as a matter of course, over-stimulate both B and T-lymphocytes which lead to non-suppression of already-resident XMRV virus in the victims.
100% EXACTLY!!! Scientist Judy Mikovits was 1000000000% correct with all of her evidence and proof but those of us that are awake to that and don’t buy into the government and media discrediting truthful honest scientists and doctors and treatments and tell us the opposite of what’s true. I got my ME/CFS from vaccine injury at the end of 2016 and that is doctor CONFIRMED, which 99% of them will absolutely NOT tell you that or give you a diagnosis of vaccine injury because then they have to fear losing their jobs, being discredited and lied about and told they are quacks or loosing their life!!!
I am wondering about this myself. I have ME, but I am being tested for new symptoms and I have severe iron-deficiency anemia. My symptoms mock both lymphoma and leukemia without identifying blood tests. I’m on my way to a cancer center next week. So many questions!
why can the do not a biger study? it is so small… I even do not know what to think about such results…
Since the brainstem is the earliest-evolved part of the brain, its glial functions might also be different from later-developed parts of the brain. Glial cells play a major role in the functioning of other brain cells, so an abnormal response to cytokines or other communication molecules would affect neural functions too. I’d like to see the research focus on the glial cells in that part of the brain. Maybe the glial processes (tentacles) are longer or shorter, or move faster or slower, or show other signs that present technology can measure.
I agree with the glial cell function theory that Nico mentioned. I had a crash of ME/CFS symptoms (from my usual moderate/high functioning level to low) fatigue, POTS, etc after a vaccine booster which may have over-stimulated my B and T lymphocytes that F16JetJock mentioned. I recovered back to my usual level very quickly after starting low dose naltrexone which theoretically promotes glial cell health.
cort, where do we go from here to help the sufferers of today? housebound for 25yrs. from ME/CFS that turned into Parkinsons. can barely get through the day. i only look forward to SLEEP.
I have personally talked to scientist Judy Mikovits and I fully believe what she said…. The FIRST thing you have to do is heal your GUT, if you don’t do that then nothing you ever do will work!!! So do some research and focus on 1st healing your gut and 2nd inflammation. Wishing you well and sending prayers.
ty. how to heal the gut, any answers appreciated.
I’ve been researching that myself. Several things such as eating a certain way, detoxing your body, taking certain supplements etc etc things like Spirulina and Chlorella are amazing antioxidants aka superfoods that detox your body getting the bad stuff out etc in fact I just bought both of those and some good vitamin C, D, Zinc, magnesium, B12, NAC and L-Methylfolate that I have to take since I have the MTHFR genetic mutation which blocks the vitamins and supplements that you take unless you take this then it will make them bioavailable also with all supplements you need a good bioavailable form of that vitamin or supplement so your body will actually benefit from it. There is LOTS of good information online and also YouTube videos that go over healthing your gut “Leaky Gut” and there are lots of different companies that market their supplements as healing your gut, one company I like is called Touchstone Essentials they have many products and lots of information on each product etc but there are lots of companies that do, another I like is The Health Ranger Store and he provides excellent info and even has a website with all kinds of stuff I thinks it’s Natural News dot com. Good luck
i have no way of getting anything being so disabled so whatever food is brought to me i have to eat. totally housebound forcing myself to eat everyday.
I understand the situation because I was 98% bedridden since the end of 2016 and I live with my mom who takes care of me, then after constantly doing nothing but research research research I changed some things in my life such as trying to get off all the big pharma prescriptions that I could and switching over to ALL NATURAL vitamins and supplements and made my main focus DETOX, and that helped me to improve drastically to the point of now yes I am HOMEBOUND but I’m not bedridden like I was!!! I am now going to do what Judy Mikovits said to do and that’s to heal the gut, she said if you don’t heal the gut then no matter what you do you will not get better! So put all of your focus on healing your gut! Go online and research the heck out of it and do whatever you have to do to make it work for yourself! If people want to get better they can’t rely on the system, because it’s broken! They keep people sick because they get a ton of money out of us and our insurance etc so my words of wisdom are to do exactly what I have done and I am doing!!! You can figure out a way to change your diet or do whatever needs to be done, just look at it as a life or death situation! Do you want to get better or not? I can guarantee the answer out of everyone’s mouth is YES, and this is the only way, if not then you will just continue living in the exact same situation forever. Insanity is doing the same thing over and over and expecting a different result. I know I am willing to do ANYTHING, will you do anything and everything possible to get better??? Focus your main research on DETOX because we are all FULL of bad stuff, not only everyone with MECFS but everyone in the world is because We are getting hit from all angles! The air the food and the water and Think about the fact our bodies are made of 70% water, so obviously you need to be putting the best water in you so the first thing that I did was bought a Berkey water filter and I use that water for EVERYTHING that I drink or cook with etc as far as the air… did you know that they say in our homes there is way dirtier and toxic than what it is outside well I’m sure that has changed drastically over the last 3 years but point being I got an Air Doctor filter for my house and that helps, then as for the food you NEED to figure out the healthiest things and way you can eat for healing your gut… Yes people bring you food and you can only eat what they bring you but I’m sure you can tell them that you’re trying to heal your gut and can they please help you out by bringing you things that will HELP YOU NOT HURT YOU, if not then you can go online and order groceries yourself and have them delivered to your house and order fruits and vegetables etc you need to be willing to do whatever it takes to get better BOTTOM LINE!!!
ty. still trying to figure if i can take my 2nd bath of the yr. needing help. i stink, hairs dirty, i’m a mess. i’ll look into detoxing though. cant send food to home, no credit card.
I understand and for the first couple years I could only take a shower sitting on a chair with my mom helping me bathe and my heart rate would still reach 190 just sitting there because my body couldn’t handle being upright for more than 2 minutes or for walking etc because of all the 100 other diseases and syndromes that MECFS causes, it was my POTS syndrome acting up. It’s been a long journey (several years) of detoxing off and on and trying out different supplements etc and then about 9 months ago I started to be able to SOMETIMES shower by myself sitting on a stool of course and as long as I get help from my mom to just wash my hair and put conditioner in it I can do the rest alth it takes me about 45 minutes. and now I take a shower still sitting on a stool of course but I am able to shower every 2 weeks and sometimes every week YAY!!! My mom still comes in to help me at least with washing my hair and putting the conditioner in and then I can usually do the rest by myself, it takes me about 45 minutes and so worth it and such an achievement!!!
Ever since the beginning I’ve never been able to take baths without going into a MAJOR CRASH because that’s harder than taking a shower, when you’re in the bathtub you have to constantly lay back to go under then water to wet your hair, rinse the shampoo, rinse the conditioner etc and THAT is way too much work and makes me really sick and hurts my back, plus with only bathing once per month I definitely don’t want to bathe in that dirty water, although something is better than nothing, also shaving legs that get really hairy then their is hairs all over in the water and when draining it leaves like a ring of hairs so then my mom would have to wash the bathtub and I try to “need” her as little as possible since she is 67 and also works a full time job and has medical issues herself and is always exhausted so I feel bad for her because she does everything else to take care of me and it’s a lot!!! She has tried to help me a few times in the bath and used a big cup to rinse out my hair but still getting in and out of the bathtub is a lot of work and when you stand up out of the bathtub it’s like instantly a REALLY heavy body feeling and making me so exhausted etc
Who do you have that takes care of you as far as cooking and cleaning and getting food and bathing, getting meds going to doctor etc??? Hopefully you are on disability and food stamps? I’m trying to help you the best that I can. You don’t have a bank account??? Yes make sure to research the heck out of detoxing and do several different kinds (not at the same time, and a few days between different kinds, all work differently and since there are different toxins etc in everyone there is no way of telling what works best for someone and is the ticket to helping you HEAL that’s why you are trying several and hitting different angles, detoxing stuff is really cheap and it is All Natural type stuff) which will help so much on getting the things out of your body that the other detox product didn’t etc I can tell you a few things I used if you would like?
i have no one to help. no way to get to dr which really scares me. my dear friend can’t drive for 6 months because of surgery so i have no idea how i’m gonna get to drs. just found out in jan. that i had a heart attack and yes POTS too. i manage best i can which isn’t good. only getting disability nothing else. i’m 71 and over 4 yrs. ago, parkinsons too. in such a DAZE since i was 46, EVERYDAY. i am SO scared!
I am sorry to hear that you don’t have any help. Since you are on disability however you can get EXTRA HELP and there are definitely some options for you for several different things such as getting a ride to your doctors appointments which is done through your Medicare so just call them and they can explain how you can go about getting that, I believe almost ALL Medicare plans come with that, I know every year when I pick my Medicare plan which I pick “WellCare” 99% of the plans have that as a free little add on so just give your insurance customer service a call. If by some strange chance you don’t have it then you can always just use Uber for the ride.
Then as far as food goes… if you are on disability then you 100% qualify for food stamps which they call EBT and you can fill out all the paperwork online, it’s done through whatever state that you live in’s government program. The trick to getting more is when filling out your paperwork you need to make sure that when it asks for all the information on how much you pay for monthly expenses, when you list rent and utilities you need to make sure that you don’t combine those numbers!!! They HAVE to be separate, if they aren’t then that’s what makes the difference between getting $50 per month verses $200… most people don’t know that and yes it’s the stupidest thing ever and the food stamp people won’t tell you about it either so just make sure those are seperate for example $600 in rent monthly and $50 in electricity/utilities and NOT combining and just saying $650!!! Then it will ask separately for medical expenses if you spend anything over I think $25 or $35 per month then list them out like it asks, and if you don’t then skip that. Then the other part that makes the HUGE difference is when it asks if you live with someone do you shop/make meals separately or together and you MUST answer the question that you shop/make meals SEPARATE, if not then you get ZERO food stamps. So definitely go online and fill out the forms to apply for food stamps and they process it really quickly. When you get them then you can actually order the groceries a few different ways since obviously you can’t go grocery shopping you can order them online either through Amazon or by using a different app such as Walmart groceries etc. and then you can pay with your food stamps, these options finally became available I think 2 years ago yay!!! Then there is little programs for extra help through your state such as getting “meals on wheels” which is actual MEALS delivered right to your door!!! When you’re looking on your states help for disabled people anytime it says “elderly” they are also including disabled people but most people don’t know that you are qualified if disabled. Another thing that Medicare started this year depending on your actual insurance plan is something called OTC benefits which every quarter you get a certain amount for example $90 to spend on over the counter vitamins and supplements or medical supplies which you order online through CVS store, for that just ask your insurance company when your on the phone with them and they can tell you ANY BENEFITS YOU HAVE ON YOUR INSURANCE PLAN that most people aren’t aware that they have. Obviously every little thing helps since us people that are disabled and on disability don’t get hardly any money per month to live off of especially since the price of absolutely everything has skyrocketed. Anyways make sure to do your research and right now you need to just be focusing on detox and gut health and then inflammation after you have fixed your gut health. Best of luck to you. I’ve tried to help you as best that I possibly can and this has taken all of my energy envelopes. Good luck.
ty but i don’t know how to work things on the puter. i know very little and uber? i haven’t a phone that works with it. mentally my brains gone from these illnesses and parkinsons really damages it even more. ty again!
I’m not trying to be rude but honestly I have spent so much of my time trying to help you and giving you multiple different options for things that can help you out and I am I’m extremely aggravated with you because you, YOU asked for my help because you wanted questions answered plus I went above and beyond out of my way to try and help tell you about different state programs and food stamps that you can qualify for BUT since the very beginning you have came up with nothing but EXCUSES and the I CAN’T do this or that… so if you just want to spend the rest of your life like this instead of actually doing something about it to try and see if you can get yourself better or even any improvement which I guarantee that ANYONE can by detoxing then that’s on YOU. I can see a lot of people are STUCK in the same mentality as you are in this community, my life was so MISERABLE I couldn’t handle it and all I can say is I THANK GOD that I have always been a go-getter and will let NOTHING stop me!!! From the moment I got sick my life instantly changed just as all people with MECFS and I decided right then I wasn’t going to just lay down and roll over and let this completely take my life without trying absolutely EVERYTHING AND ANYTHING no matter what!!! So I researched, researched, researched and researched and I have spent literally THOUSANDS of hours doing that research ALL BY MYSELF because as you know everyone with this disease has to be THEIR OWN DOCTOR because not only do 99% of the doctors out there not know a single thing about this disease but they aren’t even willing to even help someone out by researching it and seeing what they can do to help you. I had to figure out what disease I had because I went to 40-50 doctors of all types and nobody knew what was wrong with me so eventually I figured it out and printed off tons of papers about it and then I would take those papers to every single doctor going through the same thing of doctor after doctor etc and as far as the MECFS specialist go they can only do so much because as you know there are no treatments and no cures for MECFS and I’m willing to BET 99.9% that there never will be because I fully believe everything Scientist Judy Mikovits said, so therefor nobody will ever be able to do anything about it because they will never admit that THEY caused it because of multiple reasons like class action lawsuits and making every country go bankrupt over that plus everyone would lose all trust in the entire medical community, Pharma and the system!!! Anyone who even gets close to figuring it out or trying to expose it instantly gets their name drug through the mud and told they are wrong, that they are crazy, instantly loses their credibility as an expert and if anyone else in the industry backs them up then the same happens to that person, so nobody speaks up and does the “right thing” also they all get their medical license taken away or if it’s a scientist then literally nobody will hire them because the industry is so connected, they get defunded, lose their career, which often causes them to lose EVERYTHING and and go into bankruptcy and some even lose their life in fact over the last 3 years LOTS of people have been “taken out” and lost their life for exposing things. There is a lot of things you can find out all by putting in “the work” by researching things!!! I can tell you right now that I was the sickest of the sickest and my MECFS specialist said that I am the sickest person he has EVER seen with MECFS, for a long time when I was so ill that it was a normal thing for me to sleep 92 hours STRAIGHT because I felt like I was literally poisoned and dying, my mom would try and wake me up to get me to drink or eat or take medicine and always wanted to take me to the ER which is totally useless because there is NOTHING they can do to help us, but anyways it was impossible for me to even stay awake for more than 2 minutes when she would be begging me to go to the ER, asking me questions about my symptoms etc. and she would sit on the floor next to the side of my bed and would cry and I felt bad that My illness was making her feel so sad and scared for me but I couldn’t even stay awake to comfort her or let her comfort me!!! So needless to say I was EXTREMELY SICK FOR SEVERAL YEARS and if I can do research digging and digging trying to find anything that is a possibility of helping me and then getting that product and trying it out for a while and doing that over and over with all the MECFS protocols, vitamins, pharmaceuticals and different DETOX’S…. THEN ANYONE AND I MEAN ANYONE who is sick can do exactly what I did WITH NO EXCUSE!!!!!!!!! If you want the chance to get better YOU HAVE TO DO IT, because NOBODY can do that for you!!! Computers are cheap these days and there are plenty of used ones for sale online cheap like Facebook marketplace, Mercari, eBay or brand new you can get a cheap one for less than $100 and the same goes for a cell phone which OBVIOUSLY you are on a phone or a computer or tablet on this forum website right now messaging me so if you can do that then you can do EVERYTHING I mentioned for you to get FREE HELP… aka go apply for food stamps online or call them and ask them to do a phone application, get a caretaker by simply having your doctor prescribe one for you which more than likely you can call their office and simply ask for that referral to have it prescribed and most doctors that know how sick we are won’t even make you go to their office to get that and Medicare will pay for it or the state will sometimes too, call meals on wheels for free cooked warm meals delivered to your door, you can call whoever your insurance is through Medicare and ask them what extra programs or assistance are offered through your plan…. so the only thing stopping you from doing this is YOU, nobody and nothing else!!! If you want help then it’s literally right there for you, all you have to do is apply for it. Over the last couple of days I have spent a couple of hours typing you trying to help and I cannot do it anymore I’ve went above and BEYOND my limit and I’m tired and aggravated. Please help yourself, I see you making comments on here asking people for help but you just don’t take any of the advice you were given. Good luck to you I hope you get well!!! Take care.
It’s this site and you can search a lot of reports and research Mike Adams The Health Ranger has done over the past 20 years
When my fibro and CFS symptoms were at their worst, this was the part of my body that felt the most terrible and pain would seem to radiate out from there. I would not have been surprised if it was inflamed and driving many of my other symptoms. I also wouldn’t be surprised if that was being driven by gut issues because when I treated that, many of my symptoms abated.
Yes there has been a ton of people that have said the same thing about feeling better after working on leaky gut syndrome and healing your gut not only for MECFS but for multiple medical conditions! If you re-search leaky gut syndrome it’s one of the main causes driving all diseases and so many people have it because the food we eat is so overprocessed and garbage compared to what it used to be like in the 80s for example. I’m so glad to hear that it helped you, wishing you the best, research into doing detoxes that really helps!!!