In 2012, Chris Armstrong published the first metabolomics paper on ME/CFS. Today, he’s heading the OMF’s 5th research center in Australia.
Chris Armstrong PhD (biochemistry and molecular biology) was there at the beginning of the metabolomics field in chronic fatigue syndrome (ME/CFS). In fact, Armstrong was the lead author of the first ME/CFS metabolomics study published in 2012.
I asked him how he got started in ME/CFS. He said ME/CFS was a good fit for him in a number of ways. For one, he was interested in the role of energy metabolism in chronic disease – a field that has only grown in importance in ME/CFS over the past ten years – and which occupies his thinking more and more.
Metabolomics, with its focus on what’s happening in the metabolism right now, potentially provides an excellent way to get at the functional underpinnings of disease. Our metabolism, for instance, shifts all the time, in response to exertion or infection or digestion – making metabolomics a good fit for studying the energy metabolism problems in ME/CFS and symptoms like PEM.
Opening the 5th Open Medicine Foundation-Funded Research Center in Australia
After a couple of years working with Ron Davis and the Open Medicine Foundation in the US, Armstrong said he welcomed his return to Australia to open, in collaboration with EMERGE Australia, the 5th Open Medicine Foundation-funded research center. He’s got access to all the equipment he needs, he’s been successful in government and philanthropic grant applications, the cost of doing research is relatively less expensive, and the formation of the Australian ME/CFS Biobank was another plus.
The idea is to do more with less, and right now Armstrong actually has more. In fact, Armstrong has been on something of a roll regarding getting his ME/CFS grant applications funded. Scouring the ground for possible funding, Armstrong somehow landed grants from more than 5 different funding sources (federal/state sources, philanthropy) and is now, get this, collaborating on 15-20 separate studies. The new Australian ME/CFS research center may be new, but it is already very busy.
The “Crash Course” Studies
One of Armstrong’s studies seeks to learn why people with ME/CFS are crashing.
A longitudinal study that tracks how metabolites change over time in response to good/bad days in ME/CFS has been on Armstrong’s wish list for years. Armstrong predicts that the study will help uncover some of the biological underpinnings that are driving key symptoms such as post-exertional malaise.
Finger-prick blood and urine samples in combination with wearables (to assess sleep, activity, blood pressure and heart rhythm) and surveys will enable researchers to find out which parts of ME/CFS patients’ metabolism go screwy when they crash. Those, in turn, will provide a roadmap they can use to dig deeper, hopefully, into the core problems in ME/CFS. They expect to have preliminary data available by next year.
Armstrong is currently collaborating with the multiple teams to initiate a longitudinal study on pediatric ME/CFS patients in Melbourne and a 3-month adult study called the “Crash Course” that follows ME/CFS, Long COVID, and Chronic Lyme disease at Stanford.
Hungry Cells?
Could ME/CFS patients’ cells be working overtime to stay alive?
Another study will attempt to determine fundamental elements ME/CFS patients’ cells may be missing/ hungering for. ME/CFS patients’ and healthy controls’ cells will be put in different media and then tracked. Armstrong and his team will then add in their compounds of choice – such as big players in energy metabolism like hydroxybutyrate, glutamine, glucose – tag them – and then, in an effort to see where the breakdown in energy metabolism occurs – follow them.
An ME/CFS cell that starts sucking up one kind of media could inform us about a compound that is, in a very fundamental way, missing in our cells.
An ME/CFS cell that feeds voraciously on all sorts of substrates, on the other hand, might be working overtime simply to stay alive. It’s possible, in other words, that our cells are starving in a field of plenty. In an effort to compensate for a broken energy production system, they may be taking in more resources than usual. That would jive with findings from the early metabolomic studies which uncovered a similar profile to that seen in starvation. Armstrong reported that the “starvation” finding seems to be holding up and corroborates well with Fisher’s recent finding of inefficient ATP production in ME/CFS.
Looking For Waldo
Thanks to a nice donation, Armstrong is also following up on a unique hypothesis in ME/CFS that could explain those energy production problems. In fact, Armstrong’s “Looking for Waldo” study appears to be the first of its kind done in any disease.
Could high levels of ammonia be putting a damper on cellular energy production in ME/CFS?
It probably comes as no surprise that excess ammonia can be a problem. When a dysfunctional liver fails to break down nitrogen, excess ammonia can produce neuroinflammation and encephalopathy. Nobody, until now, has applied the excess ammonia issue to cells.
Armstrong glommed onto his cellular ammonia accumulation hypothesis when metabolomic studies suggested that people with ME/CFS were using amino acids for fuel at a faster rate than healthy controls.
Amino acids are usually used for fuel at an elevated rate during a stress response or starvation. When you’re starving, for instance, your body will save your carbohydrates to make sure your brain and immune system are getting them. The rest of your body will use fats and amino acids in greater proportions. The long-term use of amino acids for energy will reduce digestive enzyme production and break down muscles and connective tissues.
For some reason, people with ME/CFS also appear to be preferentially turning to amino acids to power their cells. That presents a potential problem because amino acids have this pesky nitrogen atom attached to them that needs to be taken care of. The body usually eliminates the nitrogen from amino acids in a variety of “safe” forms, but the ME/CFS metabolomic studies are not finding as much of these “safe” forms as expected.
That suggests that all that nitrogen is being eliminated all right – but in “unsafe” forms such as ammonia or peroxynitrite – two highly reactive compounds that can wreak havoc in our cellular energy production system.
In this novel study, Armstrong is tracking the molecules in cells to see what happens to nitrogen as it passes through the energy production systems found in ME/CFS. These cells will be grown and monitored in more stressful and less stressful conditions. The way these cells use amino acids, sugars, and fats for energy production will be compared between the ME/CFS and healthy participants.
Do the Eyes Have it? The Ocular Motor Project
The Ocular Motor Project falls into the “Isn’t technology great?” or “What will they think of next?” categories. Whether or not the eyes are windows to the soul may be debated, but they can certainly function as windows to our health.
Early results of the eye tracking project are, well, eye-catching. Could the study yield a diagnostic biomarker?
It turns out that humans devote an unusually large part of our brains (50-80%) to visual processing. Simply the act of following a dot across a screen requires that multiple systems work together properly. It takes, for instance, sensory processing to direct the eyes to move, muscles to move them, pupil dilation/contraction to adjust to the light present, etc.
Tracking anything that complicated can reveal a lot about neurological and other diseases. This is the first time, though, it’s being applied in ME/CFS. The project is already producing some very interesting findings indicating that some sort of pathology is present. Armstrong and collaborators hope to develop their findings into a diagnostic or objective marker for ME/CFS and its symptoms.
The tool may even be able to pick up the early fatigability and exertion intolerance that occurs as the eyes (and brains) of people with ME/CFS tire over time. Thus far, Armstrong is finding, in contrast to healthy controls, that the eyes of people with ME/CFS get worse over time at following that dot – leading to the possibility that the Ocular Motor Project could lead to the first easy test for exertion intolerance.
Conclusion
Chris Armstrong and the 5th Open Medicine Foundation-funded research center in Australia are on something of a roll. Armstrong is continuing his focus on energy metabolism as he and his team try to understand the metabolic underpinnings of ME/CFS. If all goes well, we should learn more about why people with ME/CFS are so susceptible to crashes, why their cells may be starving (and what they are starving for), and if excess ammonia is wreaking havoc on cellular energy production. Plus, the eye study could potentially provide a cheap and accessible diagnostic test.
My first coronavirus was not followed by any side-effects at all.
My second made me feel very ill for a week with much worse ME symptoms.
coronavirus JAB
Sorry to hear this you are not alone.
Hope you also put your experience with the vaccine in Cort’s survey. He is tallying how M.E. patients are doing with the Covid-19 vaccinations.
If you mean vaccine, same with me. Terrible symptoms now.
First jab pretty much ok, 2nd, not so much but bearable. However, following the flu jab I’m experiencing a bad flare of fibro symptoms plus really bad sciatica, the worst since I first got it. Coincidence? Now I’m seriously contemplating whether to have the booster. I’m still recovering.
I won’t be getting anymore vaccinations for covid. I started with Moderna; had increased ME symptoms for 6-8 weeks. I waited 6 months then tried pfizer. I’m now in the middle of a bad relapse. I can’t prove its the vaccination but I’ll take my chances with the virus going forward.
Hi, Patrick. Curious why you didn’t stick with Moderna for your second dose one month after the first as far as protocol goes? The Pfizer has a different action for rendering the virus unable to infect so to some small degree you just had apples and oranges. Experimenting a bit or advised by your MD? Dr. Klimas states that we are mildly immunocompromised so the vaccine should work for us. I still believe just as is COVID that a virus set off my years of ME. Grrrrrr. Marcie
Mine was the reverse. Flu-like for 3 days, tired for 1 -2 weeks. I planned for the 2nd being similar but nothing noticeable at all.
The eye tracking is interesting. When having eye health tests involving watching moving dots etc I have been repeatedly told to hurry up and not to pause and think about it when actually my brain tires and my eye tires and I have to really try hard to coordinate the 2. I have noticed when watching TV similar things occur when I feel that what I’m seeing nd hearing is not coordinating in my brain, hard to explain.The fact that I have ME/ CFS/ fibro doesn’t register with ophthalmologists in my experience no comment and move on. Oh well we can only hope…. a test comes out of the research. Thank you researchers you’re the best.
I agree Peach Blossom. Really interesting. I cant track things when fatigued either.
It looks so interesting and I love that our Aussies are doing this!!
It would be great for any useful breakthrough in this research field, but i would be especially pleased if it happened in Australia.(.too patriotic????)
My daughters CFS is very ‘brain’ based. She can do some physical activity without crashing …but a half day of socialising will render her depleted for the following 2 days!
Anxiety plays into that a lot.
Her amino acid levels are all on the low side, some under the test range.
Lactate was previously very high
Unsure currently about ammonia but feel somewhere in the years of testing that did come up as being high.
This guy sounds like he is a powerhouse of research….hope he continues to get funding
@LindaB
I noticed, like your daughter, that when I socialized (in my case, talking with and assisting customers at a retail job) that I would begin to weaken. I began taking a beta blocker (Atenolol) which noticeably improved my ability to interact with people – avoiding that
sensation of wilting away.
Best wishes to you and your daughter.
He has gotten a lot of grants approved – a good sign for us, I think 🙂
Wow, just Wow! Gives me a lot of hope that the end may be in sight for the lack of knowledge about this disease. Hopefully there will be treatments as well but just having a reason why would be great. The eye tracking makes perfect sense. So many people with chronic Lyme as well as ME/CFS can’t read, concentrate on written info or focus on written material for very long. Using this as a diagnostic tool makes a lot of sense.
Are there any time lines for results? This is important for the severely ill, and others as well. Patients who are unbearably sick are on the edge of their seats, as are their family caregivers. Time waits for no man.
I think the eye study might be done fairly quickly as he already had preliminary results for it and it’s pretty simple. If any study got done quickly it might be best to have that one done if it actually could produce a diagnostic test. It would be fascinating to learn what it’s showing in long COVID.
Just as a guess I would guess that the “hungry cell” and “looking for Waldo” studies might be done more quickly as it’s focusing on cells rather than people. The Crash Course studies might take longer.
Please don’t give up….We are just starting to get the long COVID results; they seem to be right on so far with them and huge studies are underway.
Dr Chris Armstrong is really on to something.
I’ve been telling scientists for years that ammonia is responsible for many of the ME/CFS symptoms.
It’s a byproduct of a malfunctioning metabolism
After a crash, you can see a thick layer of ammonia bubbles (like disinfectant) floating on the surface of the toilet. If severe, it actually burns during urination.
I will soon be experimenting with Calcium D Glucarate, to see if this can reduce the symptoms / damage.
Go Chris! You are a shining light for the ME/CFS community. 🙂
How about trying l-citrulline or ornithine aspartate to reduce ammonia?
Sodium Benzoate is part of Liesk’s 3.2 protocol and works well to reduce the Ammonia.
ahhh…that explains those bubbles I’ve been seeing…and the occasional burning sensation! Thank you! I’ll add Calcium D Glucarate to my ever-growing list of things to try. I just hope and pray someone finds that missing puzzle piece and these ‘shots in the dark’ attempts to find help can end soon.
Yes!!!! When I’ve been feeling awful, same thing.. extremely foamy urine.
Even took pictures to show doc.
All normal test fine. I out it down to dehydration. So this is interesting
if you shake a vial of urine and it produces alot of foam, i have heard that another source to cause foam can be protein in the urine, but that should show up on doctor’s testing
*(anyone ever have the layer look silvery sort of like mercury?)
I’m in Melbourne Australia and have been approached to take part in the eye tracking project. Excited to read about the other things Chris is working on!
Excellent news. Excellent research and writing, as always. Thank you Cort.
Thanks
Thank you Cort. We here in Melbourne are so proud of our home grown researchers like Chris Armstrong and all of those who are working with him.
For sure. I loved that besides having all the facilities he needs, that government support is a bit better down there and that money goes a bit further 🙂
Hi Cort, have you ever thought all these scattered research and money is simply being wasted away. I know the Academia field very well and the fierce competition, everyone wants to publish a paper. But I am really not sure they understand this disease. After all these years and billions we are still looking in different areas basically step 1. Once upon a time it was montoya who supposedly had a solution (NOT), are any of you tired of keep following and reading these research results, that except for getting their name of these ambitious scientists out does not do any good for us. We are still free falling and continue in our silent death, and all who are around us, our children, spouses,….
Hi. If you are going at it very hard and go into anaerobic exercising where you produce lactic acid as a by product, you may perhaps smell this as an ammonia smell. I’m not certain of that. All I’ve ever noticed with my own odor is when I was post-anesthesia and it exuding out my pores was a very odd odor for several months. Washing with Baking Soda which I do every time I shower should make you less acidotic, I believe. Marcie
I think it’s just the way of medical research. The meta-analyses in this disease or others always rue the small study sizes, the lack of consistency regard methodologies used, the lack of really rigorous studies. It all adds up to a really inefficient research process. The NIH just spent a ton of money making sure that doesn’t happen with long COVID.
Do not, however, think that the field is not progressing and is not producing results – the results have just not filtered down into treatments. For instance, it seems to be cohering, at least right now, around energy production and blood flow issues with neuroinflammation, autoimmunity and others being pretty hot topics. The field is progressing.
I get tired of it. And there is always the ‘test’s to ultimately validate. For insurance? To invalidate others when there may be many etiologies?
I fundraised AUD$10k this year towards Chris and his team at the Australian OMF. So great to read about what it is contributing to!
Thank you for sharing Cort.
Thank you for fundraising!
Nice! Great to hear that. 🙂
Thank you too
Amazing stuff – I’ll be following his research with interest.
On eyes, I have noticed that my eyes have lost the ability to track and focus, causing a lot of stress when trying to read (or see anything frankly)! I have been doing eye rehabilitation exercises (vision therapy) which are helping me, but I think there is definitely an eye link with the illness.
I guess the body’s preference for fats and amino acids in our ‘hibernation’ state would suggest a ketogenic diet as preferable for ME. Or would we be better off eating lots of easy carbs, eg white rice? If anyone has any thoughts on this, I’d be interested.
Ketogenic diet makes a HUGR difference for my ME. I’m bed-bound without it. It’s not a cure all, but makes me 80-90% better. I have a mutation on my glucocorticoid receptor and elevated cortisol levels which support that possible cell metabolism dysfunction . My guess is that there are many ways for cell metabolism to be disrupted, which explains why so many of us have different variations on the illness.
@Holly Where/how did you get the glucocorticoid receptor mutation tested? Thank you.
Lack of eye fixation.
I happened upon a brilliant optometrist. You know that machine that you are asked to focus on the hot air balloon? It gave inconsistent results, because my eyes were not focusing.
He told me he can determine if it is muscular or neurological in origin.
It was one of the first things that responded to B vitamins, together with the pressure inside my head and the liquid coming out of my ears.
It used to be very difficult to fall asleep; I could feel my eyes darting around even if they were closed. Restless. Just like my heart and mind that couldn’t stay focused on one thing.
It was also observed my eyes were deprived of oxygen.
Eyes are interesting, because the surface diffuses oxygen from the air, like skin (not from blood supply). So the energy metabolism of optical tissue/cells – why would the surface show little oxygen?
My corneas are thicker than normal. The opposite is usually observed in hEDS – thin and weak ones. I wonder how many are like this?
It’s not something regularly measured.
My aorta too, tight not weak nor floppy. High resting tone of muscles – hypertonia as opposed to hypotonia.
There’s also a facial assymetry that affects the eyes, strabismus, crossed eyes. Common in hEDS and other metabolic disorders
There’s another group that has one eye that blinks at a different rate than the other one. And also some that develop drooppy eyes, with time. May go together with things like drop foot. Or some that blink at a higher rate, when tired.
Meirav,
Hello! Are you or your optometrist attributing all these eye “abnormalities” to hEDS and other metabolic disorders? What are other metabolic disorders as I was born with strabismus and this left eye is neurologically “blind” unless I close my right eye. I’m accustomed to reading about CFS/ME so help me out a bit here. I did comment below that both of my eyes will begin a very rapid right-left eye movement when stressed or very tired. Most people never notice it and I never feel it. My Mother had this as well I noticed long ago. And an odd
body odor for a period of years. I believe she had CFS as well and died due to liver tumor cancer at age 82. Thanks much. Marcie.
Hi Marcie!
The strabismus is seen very often in those with joint hyperlaxity.
If you look closely – there is also a favoring of using one side of the jaw as well. Teeth will touch on that side before the other. Or biting harder on one side, or even that the jaw is slightly shifted to one side. It’s part of the facial asymmetry.
It is seen in hEDS/HSD. I dislike using the term because it is not really EDS.
There is a greater representation in the general public of wonky collagen without disease. I pay attention and notice these things. There are also certain patterns with the hands – thumbs overextending, or the way certain fingers move, some stick together, the flying bird, etc. Perhaps it is more reflective of a pattern of development than a disease process. And this is influenced by environment (diet, hormones, from the womb, later in life, etc).
I do have a difference between the left and right eye, I don’t know if it is that I favor one more than the other. Not quite what you describe, something in that vein. With this optometrist, it was the first time I have been able to use glasses daily.
Regarding your eye movement – look up nystagmus and see if that rings a bell.
I recall reading that B1 helps with it. All the Bs have helped me. Easy on the B6 – that one can be tricky.
Can you describe the body odor?
Body odors are usually only noted in the inherited metabolic disorders, but we know that anything that affects metabolism and mitochondrial function can render them too. Did you know that dogs can smell cancerous cells/tissue before it is detected in tests? There is a place that has trained them and uses them on patients. They are trying to recreate a digital way of doing this. For reals, you can look it up.
Schizophrenics also have a very particular odor. In the 60s, there was a theory that it was a inborn metabolic disorder.
https://jamanetwork.com/journals/jamapsychiatry/article-abstract/488181
Metabolic dysfunction underlies most, if not all diseases. So I’m not surprised about the smells. This is a ripe area for research and diagnostics. You learn a lot about what is being excreted out of the body. Blood is a… transitory space. With blood work too – the question is where is that substance coming from and where is it going to?
Lately I have been smelling masala off my shirts – yet I haven’t been using spices. So fenugreek And fenugreek is used as a maple syrup substitute. I may not have Maple Syrup Urine Disease – there may be something going wonk at that same level. Etc. It just means I need to work at improving my mitochondrial and metabolic function.
Many of the inherited metabolic disorders and mitochondrial diseases affect the eyes.
In my opinion, it is worth running testing to rule these out before arriving at basket case diagnoses that are only clinical for now, i.e. FMS ME/CFS hEDS etc.
The blog post prior to this one, Cort reviewed a paper on this subject.
Have you read it?
My thicker than usual corneas and aorta and hypertonia is throwing the EDS doctor for a loop, thinks I have a ‘new’ type of EDS…
She may be right. I also think ignorant, ME/CFS not even in their radar, doesn’t know of other diseases that show up EDS-like (HPP and CAH) and thinks any nerve problem = MS.
So.
I think there are more like me – cornea thickness is not something regularly measured…
So.
Let’s hope for a lot more eye studies. Corneal studies also suggest small nerve fiber reductions in FM.
Jeepers, one more!
The facial asymmetry also links up to problems with the neck (jaw connection with cervicals). Many of us have tight necks and shoulders, nerves that are getting pressed on, etc.
So getting the muscles to relax, and shifting the excitotoxic state in cells, can in turn help with all those things.
B1 could be helping not only because of PDH/acetylcholine/etc but because it is improving metabolism by increasing CO2, etc.
I’m much affected by EDS and also have strabismus. Usually it isn’t so noticeable since I had surgery as a child but my eye turns in much more when I get tired. Late at night when I like to read before bed I also have more trouble tracking…
My husband suffers from restless legs and when he is very tired from concentrating on driving on a long trip or his work doing cad on computer for hours his left eye turns in, rather alarmingly when driving, as he actually starts to see 2 images, goes away when he rests eyes, don’t know if there’s any connection between the 2 but is interesting thought
On the ammonia:
I was surprised that this was referred to as a hypothesis
I thought it was pretty obvious
since it is one of the substances that exudes through my skin.
It would sting my eyes and choke me if I foolishly breathed it in.
Over a decade of it. I learned low/zero carb is a bad idea, increases it.
The more I sank into a severe state, the more frequent it appeared.
Do others produce it too?
I find that eating sufficient carbs in the form of simple sugars
and making sure my body can utilize them (B1, niacinamide, thyroid, etc)
plenty of protein (though that was always en pointe)
pacing (keeping HR below the 100s more or less)
avoiding stress
has kept the catabolic state at bay
and with it the foul putrid smell and the ammonia
I still have one pesky smell left, the acrid sweat.
I’m overdoing it, if it appears.
At one point it was something more alcoholic and volatile in nature
so a ketone body or acetaldehyde.
Sometimes it is a very strong body odor (aka armpits)
A history of weird smells.
I wish I could analyze bodily fluids to determine what the substances are.
I think they would be very helpful in understanding the processes going wonk.
Interesting comments. Ayurvedic doctors use body odors to diagnose and treat illness. We’ve lost the art (and it appears, the interest) in the West. Time to go back to some old traditions.
Is anyone seeing an Ayurvedic doctor? The two I successively (and successfully) consulted have moved on. I’d be interested on their take on this all.
Interesting, Mutaflor (E.Coli Nissle 1917) probiotic is known to reduce ammonia (see https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5866967/ ) and is part of some MD’s regular ME/CFS protocols (see https://drmyhill.co.uk/wiki/Growing_Mutaflor )
As a FYI, CFS/ME WITHOUT IBS seems to have ammonia producing bacteria as an indicator. z-score of 3.96 or P value of 0.0037%
https://microbiomeprescription.com/explorer/ToSymptomsEndProduct?symptomId=435
My uniform used to smell of ammonia after sweating up a storm at martial arts training. Is that normal?
In the sports sphere, not enough carbs is mentioned.
I upped my carbs when it started happening,
As I became severely ill,
carbs did not suffice
By then it was a daily occurrence.
I had to work on my metabolism and thyroid to get out of a catabolic state.
You know, wasting away and cachexia, etc.
I’m still working on it.
I haven’t whiffed ammonia in a while
Thank you Cort, this looks like an interesting study. How great if they can work out WHY we are crashing. The eye tracking study is also very interesting as I now find it very difficult to read for very long, used to love reading books but can no longer read any more than a page or two at a time and have seen others reporting this problem. We need a bio marker for this illness and early detection I believe is key. Fingers crossed that these studys progress quickly and come up with some answers and perhaps even treatments. A world without PEM would be a dream come true.
Happy to hear that Australia has a Center for Excellence now. I suppose he was awarded one of the Ramsey grants? I have noticed infrequently because I cannot feel it myself but my eyes begin to twitch very quickly right and left together in time when I become overstressed. Someone watching me will remark on this and I wonder if anyone else has had this same experience. Another dynamite article, Cort. Thanks. Marcie
I wonder if he is saying taking amino acids is detrimental.
I can’t afford to make big donations to OMF Australia, but I have left them one third of my will.
At least if I can’t deal with this illness any more, my life will not have been in vain.
thanks- great article Cort. I joke with my hubbie that searching for resolve of this monster disease is like searching for waldo.
So my first Moderna shot, my arm hurt like it got punched, and the soreness traveled across the shoulder to the neck and then spasmed my back muscles into ridges, neck to hips. So sensitive and sore!!!! Within minutes of getting the shot I could not swallow at first, just a couple seconds of this, then normal again. But after we left 15 minutes later, that happened twice more on the 5 minute drive home and then vanished. I’m used to that happening, throat spasms while eating, so I’m familiar with waiting it out calmly until it passes.
My second shot, a little arm soreness, no throat problems, and a short 30 minute nap. Then a surprising surge of energy for a little bit which I took advantage of. Muscle issues but not like the first time so I didn’t make the connection maybe.
I got the flu shot on this past Sunday. Within minutes after the shot, while walking down the aisle to the front checkout, all of a sudden my back muscles on both sides of my spine ridged up again. Jeepers!! I was walking like a crab hours later, and having to use a cane Sunday and Monday and less onTuesday. No cane today, Similar muscular stuff as to the 1st moderna shot.
Anyone know what this reaction is? Is there some kind of muscle reaction from shots? Getting me a little worried as I had an uncle who got guillain-barre and transverse myelitis from a flu shot but he was in his 70’s.
Reading about the nitrogenous wastes hypothesis Chris Armstrong is investigating reminded me of an an interesting observation by Dr. David Bell of water hunger in patients (certainly I have this). If there is a toxic waste in the blood and extracellular fluid and it isn’t being excreted, might that throw off the homeostatic mechanisms designed to control fluid balance in the body? Here is his quote:
” It is just that the pituitary does not seem to think that the hypovolemia [in patients] is wrong or bad, no big deal. However something recognizes it as a big deal because people with ME can drink up to three gallons of water daily. When I asked an endocrinologist about this, he said it was ‘psychogenic water drinking.’”
https://www.investinme.org/Documents/Research/David%20Bell%20Blood%20Volume%20in%20ME%20Sep%2015.pdf
I hope that Chris Armstrong will get the money and human resources to further investigate his hypothesis and also, hopefully dramatically expand the understanding of the metabolic picture in myalgic encephalomyelitis, and how it integrates into the overall disease pathogenesis. His work representations the sort of innovation our disease so desperately needs.
I’m interested* in the side comment that ammonia breaks down connective tissue. My body was hypermobile but only in a flexible and novelty way (blue sclera, party tricks) with one really minor joint issue pre CFS gradual onset. Since onset, issues have increased to the point where I’d qualify for a HSD diagnosis. I’m sure deconditioning and lack of muscle strengthening haven’t helped, but some of the joint and connective tissue issues actually occurred while my cfs was quite mild. Eg i spend the entire second year of my fatigue trying to track down a mild chest pain which turned out to be reflux, likely due to a hiatus hernia. I was still quite active at this point, working, walking, teaching dancing. It could be coincidence, but the theory that ammonia byproducts latched on to connective tissue that was only just strong enough for healthy function and degraded it into the mildly disfunctional realm is an explanation that fits well.
*well actually interested in everything in the article being an avid research junkie and a native Melbournian.
I have had problems tracking things with my eyes across the page whether it’s dots, lines, or words and I can never get my eyes to fall down to the next line when reading. It’s been like that for decades now (since I had ME/CFS). My eyes also tire easily and get blurry and I get headaches if I try to push through it. I have been struggling with keeping them from crossing lately as well.