This is the beginning of a series of blogs that will attempt to keep up on long-COVID research and its possible applications to chronic fatigue syndrome (ME/CFS), dysautonomia, fibromyalgia (FM), and related diseases.
These blogs are being done with the recognition that much (much) more money, energy, talent, and resources are going to be devoted to understanding long COVID over the next couple of years than have been spent on ME/CFS or FM in their entire history. They’re being done out of the possibility that this research will actually get to the bottom of what’s happening in long COVID, ME/CFS, and possibly even fibromyalgia.
The series is being started with the anticipation that at some point it’s going to be very hard to keep caught up with long COVID research.
We’re not there yet. With this early taste of long-COVID research studies, though, we’re getting a foreshadowing of what will come. With regard to epidemiology – the attempt to understanding who, how many, and what kind of people come down with long COVID – even at this very early stage, we’re seeing studies whose sizes dwarf anything we’re used to seeing in ME/CFS or FM.
One of the studies getting underway, for instance – the Collaborative Cohort of Cohorts for COVID-19 Research (C4R) – which contains over 100 researchers, will include within it 14 already established prospective cohort studies. These studies are already following the health of large populations in detail. By piggybacking on them, the C4R study should be able to determine what kind of person gets long COVID, what kind of long COVID they get, etc.
An almost 1,000-person healthcare worker study found that 32% were experiencing difficulty coping 3 months later, with fatigue being the most troubling symptom. A 6,000-person survey found six months later that 2.2% were experiencing long-COVID symptoms.
Links to ME/CFS Strengthen
Leonard Jason’s epidemiological study found that, over time, the core symptoms in ME/CFS are becoming more and more prominent in long-COVID patients. Similarly, a review of long-COVID studies concluded that:
“Early studies into long COVID symptomatology suggest many overlaps with clinical presentation of ME/CFS.”
A systematic overview of 45 reviews suggested that two kinds of long COVID are emerging, neurologically: a life-threatening one similar to Guillain-Barre Syndrome, encephalitis, and one similar to chronic fatigue syndrome.
A Fibromyalgia / Chronic Pain Long-COVID Connection
Some people with fibromyalgia may be under the impression that long-COVID research will not benefit them much. The death of Heidi Ferrer, a Dawson’s Creek writer, and long-COVID patient, who took her life after a year of excruciating physical pain that left her unable to sleep, underscores the fact that the connection between long COVID, chronic pain, and diseases like fibromyalgia is very real indeed.
Pain is showing up in the epidemiological studies. One 1,200-person study found that seven months after long COVID, people with a pre-existing pain condition tended to be worse off, and that 38% of the entire sample experienced increased musculoskeletal pain.
A Veterans Affairs study echoed that finding and made a different kind of news when it reported that in the six months following “recovery” from COVID-19, long-COVID patients were at a higher risk of death. They were also coming down with a wide range of disorders – many of which could be associated with ME/CFS and/or FM. The disorder list included nervous system, neurocognitive, metabolic, cardiovascular, and gastrointestinal disorders. Pain and fatigue were two of three main symptoms (malaise, fatigue, musculoskeletal pain), the study found.
The Subsetting Begins
A retrospective study presented something that we will surely see in spades over time – the attempt to subset long-COVID patients.
The Harvard study, “Evolving Phenotypes of non-hospitalized Patients that Indicate Long Covid“, assessed the diagnostic records of 57,000 non-hospitalized patients who’d tested either positive or negative for the coronavirus. It found that most long-COVID patients were under 65, and that a chronic fatigue syndrome-like condition was one of five disease conditions found. (The others were loss of smell or taste, hair loss, and chest pain.)
On a more personal note, a study titled “Reluctant pioneer” described the the difficulty getting medical care and the feeling of being “let down” by their peers that 13 doctors with long COVID experienced.
Low Energy (Hypometabolic) Brain Regions Found
Only a few long-COVID brain studies have been done but they’ve have produced some early and surprising possible connections. One Italian PET/CT scan study found evidence of hypometabolism (reduced energy production) in the thalamus, brainstem, and right parahippocampal gyrus. The study noted, interestingly, that some of the areas of the brain that were demonstrating hypometabolism were found to exhibit hypermetabolism during the infection – suggested that inflammation during the infection may have caused some damage.
Three French studies have found evidence of hypometabolism in the limbic system (thalamus, amygdala), the brainstem, and the cerebellum. One study reported that these clusters of hypometabolic activity were “highly discriminant”; i.e. they accurately described 100% of the patients relative to the healthy controls.
Different symptoms were associated with reduced metabolic activity in different parts of the brain; i.e. pain was associated with reduced activity in the prefrontal cortex, brainstem, and cerebellum. As the authors noted, reduced prefrontal cortex activity has shown up in fibromyalgia (and ME/CFS). It’s a frequent target of repetitive transcranial stimulation in fibromyalgia and is being targeted in ME/CFS now.
Insomnia was associated with the hypometabolism of the brainstem and cerebellum – which the authors suggested was causing dysautonomia. Autonomic nervous system problems, in turn, have been associated with poor sleep in both ME/CFS and fibromyalgia.
Another French study found widespread areas of hypometabolism and “lasting prefrontal, insular and subcortical (limbic) regions, problems with attention, executive functioning” (organizing, planning, etc.) as well as symptoms of anxiety and depression six months after the infection.
The French findings echo others in ME/CFS and FM that have picked up abnormalities in the prefrontal cortex, limbic system, and lower brain.
Finally, a Malaysian researcher proposed that hypometabolism in the brainstem lies at the heart of long COVID.
Conclusion
One suspects we haven’t seen anything yet. Thus far, studies indicate that long COVID is real and persistent, that a significant subset of long-COVID patients have something akin to ME/CFS and/or fibromyalgia, and most interestingly, that widespread hypometabolism in the brain may be present, and that similar parts of the brain – the prefrontal cortex, the limbic system and the brainstem – may be involved.
Time will tell if these findings hold up, but it’s certainly striking to see hypometabolism show up so early in long COVID.
We’re still in the very early days yet. Immune studies, metabolic studies, more brain scans, etc. hopefully are just around the corner.
A Solve M.E. funded project to uncover and assess the latest Long COVID research made these blogs possible
unless ‘a cure’ is found, insurance companies and gov along with gov funding will be reluctant to group difficult diseases together, for they-imo- will not want to increase the number of diseased persons who ‘might’ need support.
The brain studies may bring the most change– and other diseases with similar pattern may one day be renamed ‘PCSS” Post-Covid-Similar Syndrome.
I think that the MILLIONS of individuals with diseases that border on a disease that is almost akin to a NON- PARALYZING POLIO
and akin to ENCEPHALOMYELITIS in other individuals
…….. for YEARS and LIFETIMES…….. want a CURE !!
I think it would be useful to expand on the DALY into a downloadable pamphlet– and importantly, into a format where each individual can stack their individual self with the DALY ( thank you Mirin and all) for their own record, for doctors, researchers , epidemiologists
( hmmm… uploadable, also printable yardstick?)
One DALY step for ME
Cort, a question: have you already had a vaccination? Are you planning to get vaccinated against corona? Kind Regards
I was always going to get vaccinated as soon as possible and I did. A month or two ago I finished up my vaccination regimen.
Thankfully I had no side effects from the first Pfizer vaccine and five days after the second I had a day or so of flu-like symptoms. Then a couple of days later another couple of hours of symptoms and that was it.
I am very glad it went well. I’m still also masking it up to be careful. I’m now in the minority that way (lol)
Yea, seems like the brainstem is the answer. Thats why non infectious ppl like Brea got out of this terrible diseases with a cervical vertebrae operation. For her it was merely a compression with hypo perfusion and lowered activity. This can heal and self correct.
Those of us, who got it from an infection, are prob. f**ked for life i guess. Thats how real damage in these regions works. Thats why some ppl get short term relief from dopamine agents. Putting the brainstem in overdrive till it self corrects.
Not much light at the end of the tunnel.
With the number of people who are sick and the amount of money going to long COVID let’s hope that if it is the brainstem that ways can be found to reverse the damage via immune modulation or something else.
Hyperbaric Oxygen treatments with physio-cognitive therapy could reopen the window for neuroplasticity and rewire vital functions.
Interesting! Do you have any links perchance regarding that?
It’s sort of a general understanding I have from looking at it from the perspective of stroke and traumatic brain injury. The idea is to open up the brain’s neuroplastic ability through HBOT dives, which allows physio-cognitive therapy to be more effective. It could be helpful for a wide range of neurological conditions.
https://www.psychiatrictimes.com/view/treatment-traumatic-brain-injury-hyperbaric-oxygen-therapy
TBI and stroke rehabilitation therapies often involve a combination of physical movement with cognitive tasks. The two together produce a much better rehabilitative result than either one alone. Here is an example of one appraoch, the Perfetti method:
https://riabilitazioneneurocognitiva.it/en/study-center/the-carlo-perfetti-rnc/
I’m not sure if anyone has written about specifically combining the two, but it seems to me that each would be supportive of the other.
Jen Brea had an infection at her onset. At least that is what she said in her TED talk, so I assume it is true. There is some research to suggest that viral infections trigger connective tissue breakdown, therefore her spine issues could have been a direct result of the viral infection she had. Perhaps this is also why we see overlap of Ehlers Danlos and other conditions like ME/CFS, POTS, etc.
Hi Cort- new here. Thanks for all you do. Have you ever read the work of PolyBio’s Amy Proal? Might be something relevant to report here in relation to viruses and other pathogens, or at least keep your eye on. They are studying long Covid but also ME/CFS, EDS, Lyme, etc.
Viral / connective tissue connection makes sense to me. Could be from the virus or the immune response- either inflammatory or autoimmune. Another hot area to dive into.
I’ve heard of Amy Proal and her group – just haven’t had the time to dig into what they’re doing. Thanks for the reminder.
Yes Alexis, I seem to remember Jennifer Brea mentioning her high temperature with a flu she had, because I had the same. That’s when her issues began, if I’m remembering correctly (!) Also I think Amy Proal is very interesting. She did a great webinar in Nov 2019 for the Solve ME Initiative.
she had also something with her thyroid
Interesting about the brain. One huge question would be……was there already issues before COVID or not? Were there any scans on these people to show before and then after? And then did COVID make things progress faster into dysfunction? Or was this solely caused by the virus? Too many unknowns.
We know there is now the dysfunction in the brain and we know the actual structure of the brain is changed, WHY?????? And how much does this affect someone? (That depends on where the inflammation takes its highest toll. And a lot depends on hypoperfusion and hypoxia and then reperfusion injury.) This will be a huge part to how ones dysfunctions affect them.
It takes a strong person to live in a chronic body. And strong person(s) to try to find the WHYs of it all and not give up searching, with the brain dysfunctions and actual structure changes that this illness brings. (This illness referring to what seems to be all connected…..ME/CFS, FMS, POTS.)
I know with myself, I have these brain structure issues and all the above associated illnesses. I have been following with NeuroQuant my brain for about 7 years now. And there is still changes occurring. I question if I had COVID before it was being properly tested. The scan before the illness and scan after, changed significantly. And then the scan before vaccine and after the vaccine, changed too. This would be a good study to look into.
Its sad that it took COVID for all of us with decades of these “illness” to be taken more seriously. So many have been told it was all in there head. Well…..it could very well be, literally……a part of it. I hope we get more of our WHYs and then find our “purple bandaids”?. We may not can “fix” it, but we can cover over the boo-boo. And make it feel “all better”.
You bring up an interesting point and its an area where I believe the NIH had REALLY let us down. The NIH is doing these huge studies where they’re taking people whom they have decades of medical data on and using them to see if they can figure out who is most likely to come down with long COVID. That;s a fantastic study!
What they don’t seem to have, so far as I can tell, is a focus on taking people before they come down with long COVID and then seeing what happens as they come down with long COVID. That would tell us so much….
The NIH has only released some of its long COVID funds. They released those months ago. What the heck is happening with the rest of the money?
Isn’t that one of the studies that Ron Davis is doing? I think he was collecting samples within weeks of COVID emergence in the US.
Jonas Bergquist – Uppsala Open Medicine Foundation researcher is working with Ron Tompkins at the OMF funded Harvard Collaborative center -doing extensive tracking and testing long COVID patients. I imagine that Ron is doing analyses of the samples as well.
Interesting. Some people develop ME/CFS like conditions. Some ?smaller subset? develop Guillain-Barre Syndrome.
Could ME/CFS and more specific the inhibition going with it be sort of protective against Guillain-Barre Syndrome? Remind that Naviaux is still big on the Dauer or hibernating hypothesis against either a past danger or a still ongoing danger.
That plays into the “spinal escalator idea” that Issie and I developed, saying that inflammation and glutamate neurotoxicity can travel up and down the spinal cord. It says also that the spinal cord should be a lot more vulnerable to the combo oxidative stress / inflammation then most of the brain. This is because the nerves are a single line of cells where no single point of failure is allowed. In the brain, the loss of individual cells often can be compensated by “reprogramming” adjacent brain neurons.
See https://www.healthrising.org/blog/2020/12/11/nucynta-opioid-small-fiber-neuropathy-fibromyalgia/ and https://www.healthrising.org/blog/2021/02/11/could-myalgic-encephalomyelitis-be-a-chronic-ongoing-traumatic-brain-and-spinal-cord-injury-which-is-exacerbated-by-exertion/
There, the idea that our bodies are inhibited so strong in order to not allow (devastating!) spinal cord damage to build up has been proposed. So, there the idea that ME/CFS inhibition sort of protects against devastating spinal cord damage has been proposed.
One form of (fairly / near permanent) spinal cord damage is damage to myelin insulation. That happens to be the exact thing that is going on with Wikipedia(Guillain–Barré_syndrome):
“Although the cause is unknown, the underlying mechanism involves an autoimmune disorder in which the body’s immune system mistakenly attacks the peripheral nerves and damages their myelin insulation.”
Also, symptoms of ME/CFS often have a strong overlap with MS, another myelin insulation damage disease. Myelin damage could create plenty of different symptoms, including neuropathy, strong fatigue, attaxia, dysautomia, POTS…
Inhibiting the spinal nerves however could show something resembling a subset of those symptoms, by equally providing reduced spinal cord signal strength and activity. And now researchers sort of have found a potential cross road where the same Covid splits into ME/CFS on one hand and Guillain-Barre Syndrome on the other hand.
To make things even more interesting:
From https://www.webmd.com/multiple-sclerosis/guillain-barre-syndrome-multiple-sclerosis there is a third disease that can cause myelin damage: Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
From https://www.webmd.com/brain/what-is-cidp#1:
“What causes it?
Experts aren’t sure why people get the disorder. What they do know is that it’s caused by inflammation of nerves and nerve roots. The swelling can destroy the protective covering around nerves, known as myelin. That can hurt nerve fibers and slow the nerves’ ability to send signals. This is what causes the weakness, pain, fatigue, and numbness.”
Swelling, around the nerves and in the brain at the nerve roots? That spells increased CBF pressure as is seen in ME/FM/… and the place where so many nerve roots come together: the brain stem, another “common suspect” in ME/FM. See Wikipedia(Nerve_root).
Are we seeing a possible cross road of things affecting so many of us?
Have you heard of any updates from Dr. Naviaux? A few years ago he was working with a company to make Suramin, which he was than going to study in different disease groups. I haven’t heard a peep on this in a very long time.
He’s been working with Prusty, and as I remember the Suramin trial will be a go when the pandemic fades. He’s also put out a couple of papers. I think we’ll hear more from him soon.
I read somewhere that they plan to start a Suramin trial for ME/CFS in 2022 – but it did also say they were doing one fro autism this year, so not sure if the site was up to date
Hey Cory! Id still love to copy edit your amazing work I’m so grateful for! 😉 but this error is a more substantive one bc one whole condition may have been omitted?! “ a chronic fatigue syndrome-like condition was one of five disease conditions found. (The others were loss of smell or taste, hair loss, and chest pain.)”
I assume “loss of smell or taste” refers to one condition so where’s #5? A more fibro like pain condition? A Cv condition? Liver disease?
??
Thanks. That tripped me up as well. In the end I concluded that they counted the loss of smell and loss of taste as two conditions.
I don’t know that that was the most enlightening study! I was surprised to see only five phenotypes but was happy to see that ME/CFS was one of them.
What the heck is DALY? In years of reading Health Rising, I’ve never come across this abbreviation.
Christine Robins, You can learn about DALYS (Disability adjusted life years) from the previous article ?:
https://www.healthrising.org/blog/2021/06/16/education-unlikely-me-chronic-fatigue-advocate-mirin/
it hurts when you are over 30 years severelly ill with ME/cfs, verry bedbound, still declining….and they can throw so much money and big research groups for long covid haulers and still almost nothing for us!!! ME/cfs, FM, etc
I do not like to read this, i could cry!!!
and for excample a ME/cfs like illness is not ME/cfs. They are still just forgetting us. And put so much money in lovg covid. we will not profit from it. long covid will overlap at point, just like gulf war illness, but is not the same. so bad luck for us. until they also put so much money in really ME/cfs and FM.
@konijn, I hear your pain and dismay. But it may be that ME/CFS was also triggered by a virus or genetics that predispose us to things. It may be that the “symptoms” connect us enough to get a WHY. We have to get the WHYs. Until then we are blindly treating “symptoms”. Those “symptoms” could be the bodies way of compensation for something far worse. It could be that by “masking symptoms” we are blocking what our body is trying to use to “SAVE” us. We could make ourselves worse that way. Though symptoms are uncomfortable, it may be the lessor of the two evils. And if science gets behind the “symptoms” and gets the WHYs, then we have a starting place for a tweak or two….a “purple bandaid?”, that may CAN make it better and not do more damage…..but a covering over of the glaring “Hurts/symptoms” without further damaging us or causing more decline. Medicines thrown at symptoms don’t “fix” the underlying cause. If there is a nutrient missing or a pathway function broken down or blocked…..thats something we might CAN do something about. We have to get to the ROOT CAUSE. We have to find out the WHYS.
Its sad that it took COVID for others to take a second look at us. But we have the attention now. And it is all connected. These illnesses and dysfunctions and body breakdowns are all connected. We are each on a journey, with similar symptoms but all with different genetics and it will probably be a very individual “fix” for us. But if we get to the CORE problem. We can find the tweaks.
Dejurgen and I have been looking into genes and family histories and finding things of interest between us. We have both tried tweaking the same dysfunctions with the same things and had very different response. But if we tweak me a slight bit differently, but still manipulation of that same pathway…..then I respond in a good way too. And some things he can do and I cannot and vice versa, even though there is a known issue there. We feel fortunate to have each other with similar issues……yet different. We can try things on ourselves and pay close attention to the response and results. We both are very “tuned in and insightful”, and love science and research. Soooooo, let’s hope we get it more concrete and it will help others. Dejurgen is in process of writing some of our research and findings. It will be put here on Healthrising to hopefully help others. (We just want the WHYS.)
I think we will benefit from COVID research. I feel we will get more answers. I see parallels with myself and similar “symptoms” with COVID. Yet I’ve had symptoms for decades. (I said I had brain scans for 7 years…. thats for NeuroQuants. I have MRI of my brain going back 12 years. So I have more data than that and it is possibly giving us some important clues.)
thank you for your lovely words. I, everyone with ME/cfs or FM wants to know the why’s. And yes, there are more researcher and researchers wanting to work on it. but if you copare it with the billion for long covid (research will move verry fast for them with so much money), we are still forgotten moneywise. for excample nancu klimas, omf, so many others, good researchers, some even have treatment plans but no money to do them, etc. If you talk about personalised medicine, also no money for us. here i even do not get symptom treatment. the word ME is even not invented. if you are on the end of your rope and still declining, i have no time more to wait. the only big study (like in other real research) is the decode ME study on 20.000 persons. And ofcource that is only 1 study and not the whole picture and way to little.I know someone who had worked on breastcancer. how long and with how much money do they work allready on that and how many countrys? he got 100 papers a day, studies of such “a big” population like 20.000 persons. So i would like that worldwide, there would be go so much money for ME/cfs, FM, etc so that things can get fast forward. I even will not survive until the decode ME results. and so many off the severelly effected ones not. They even do still not have a test(s)! And then reading billions for long covid! then i must cry! why them and not us? they will be helped soon. We are still not. If i was still better and not declining so fast, i would feel different about it. but from the 25% ME sufferers, there are a lot at the end of their rope. xxx!! money we need, big money and moving verry fast!!!
An upcoming meeting of potential interest: NINDS & NIMH.
https://neurocovidpasc.org/
That looks fascinating, I’d love to be a “fly on the wall”. (Allowed to hear it.)
Thank you sir! I hope everyone had a chance to read Michael’s blog on being in Avindra Nath’s long COVID study.
A Science Insider Gets an Inside View of Nath’s Long COVID Study
https://www.healthrising.org/blog/2021/05/30/science-insider-nath-long-covid/
Thanks for letting us know Michael, that looks like it’ll be a very interesting meeting.
If COVID long haulers can be studied and noted dysfunction in pathways or genes then it may be that connections can be made between us “long time – long haulers”. And if a COVID long hauler, recovers …..then what was either ramped up or turned off may can be determined. That gives hope that a WHY could be discovered. Then possibly tweaks for us “long timers” can be found and tried. It opens up doors and we have more scientist and doctors on it than before. Its sad that such a horrible thing has happened and so many have died and suffered and still do……but there may can be some WHYS gained from it.
@dejurgen
@Issie
@konijin
kinijin,
It suddenly struck me that there may be another ‘hit’ in the future (three years from now?) where the gov puts forth funding $$$$$$$$$$ again in volumous amounts due to a future time recognition because of lobbying by post-covid people who realize after years that they have me/cfs
AND there are enough to lobby together
BECAUSE they finally realize from their personal research (especially into cfs/me) that it is a ‘life-long sentence’
UNLESS they team together and ‘broker’ a change thru gov funding
in APPROPRIATE research areas.
dejurgen, definately agree with you re where you are and are headed in thoughts, and it really resonates with me how this may somehow be related to what you found re: Guillain-Barre Syndrome.
“And now researchers sort of have found a potential cross road where the same Covid splits into ME/CFS on one hand and Guillain-Barre Syndrome on the other hand.”
i am thinking it is less of a split then a continuum line. where at some point on the line effects can still be severe, but for some reason EMG and NCS are unable to show the damage that causing problems because is not myelin deficient.
Issie,
i long for your WHYS to be rooted out and expkained by WISE people…….
and include you and dejurgen in that cohort group, …….looking forward to reading your (plural) work here on HR.
*Glad for Mirin’s DALY advancement.*
@sunnie, you are so kind. That would be awesome if we can be of help. We sure hope to find more WHYS, and then tweaks for them. Dejurgen and I are always studying and learning…..so we hope what we learn will make a difference.
“i am thinking it is less of a split then a continuum line.”
I can see more of a continuum rather then a clear split too. Researchers and doctors seem to prefer clear splits rather then having to deal with the difficulties of an entire spectrum. So long they can see both ends of the spectrum and sort of a split, we have a good starting point.
“where at some point on the line effects can still be severe, but for some reason EMG and NCS are unable to show the damage that causing problems because is not myelin deficient.”
I’d say that this seems to be a continuum here too rather then a split myelin damage versus no myelin damage.
From
“From https://www.webmd.com/brain/what-is-cidp#1:
“What causes it?
Experts aren’t sure why people get the disorder. What they do know is that it’s caused by inflammation of nerves and nerve roots. The swelling can destroy the protective covering around nerves, known as myelin. That can hurt nerve fibers and slow the nerves’ ability to send signals.”
I estimate that *can (destroy)* is the important word here, and that nerve conducting is not only impacted when the insulation is damaged but also when the nerves are severally pinched “close to but before damage occurs”.
Remember so many healthy-ish people that have blocked nerves when doing a wrong movement with their backs and losing both strength in their legs and sensation (yet sometimes feel pins and needles in them)? Add this lack of motor control and sensation to the inhibition a smart body likely kickstarts to prevent nerve swelling to reach levels of permanently destroying myelin sheets and we might be close to describe many of our symptoms.
just read a tiny bit from an article that made me realize i understand so little about what a diagnosis is, and how diagnosis can differ in how they define/describe a disease. When is a diagnosis truly a diagnosis?
Can me/cfs still be considered to be undiagnosed?
what is a diagnosis?
are some diagnosis just putting symptoms together and giving it a label?
what are the advantages and disadvantages of a ‘labeled’ disease vs
a disease where the actual cause or cure is known?
The article was:
22 August 2018
Characteristics of undiagnosed diseases network applicants: implications for referring providers
Nicole M. Walley, Loren D. M. Pena, Stephen R. Hooper, Heidi Cope, Yong-Hui Jiang, Allyn McConkie-Rosell, Camilla Sanders, Kelly Schoch, Rebecca C. Spillmann, Kimberly Strong, Alexa T. McCray, Paul Mazur, Cecilia Esteves, Kimberly LeBlanc, Undiagnosed Diseases Network, Anastasia L. Wise & Vandana Shashi
BMC Health Services Research volume 18, Article number: 652 (2018)
at link:
https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-018-3458-2
and excepts from it:
“The Undiagnosed Diseases Network (UDN) receives applications from patients whose symptoms and signs have been intractable to diagnosis; however, many UDN applicants are affected primarily by subjective symptoms such as pain and fatigue. ”
“The National Institutes of Health established a multi-site network of clinical sites and core laboratories, the Undiagnosed Diseases Network (UDN), in 2013 [2, 3] (https://undiagnosed.hms.harvard.edu) to facilitate the diagnosis/research of undiagnosed and rare diseases. Network-wide, the UDN receives approximately 70 applications each month from adults and parents of children with unexplained illnesses. Application to the UDN is open to all individuals who complete the application with a referral letter from a healthcare provider. ”
“Not Accepted referrals also were from older individuals, reported a shorter period of illness, and were referred to the UDN by their primary care physicians. ”
not so much looking for answers to my Q’s so much as showing about the NIH’s UDN (Undiagnosed Diseases Network)
@sunnie, that is basically how Dejurgen and I look at labels of illnesses. So many symptoms are connected together and are called something. But the cause is not sorted out…..the WHYs. All the symptoms seem to be similar or the same for that given label…..but that doesn’t break it down and find the cause. We want to know the cause. Is it a genetic predisposition, a breakdown in a pathway, a pathogen, virus, bacteria that is still there, a nutrient deficinecy…..what is causing it and WHY????? Since the “symptoms” may be a compensation for another underlying “cause of those symptoms”. It may not be the illness is the symptoms…..the symptoms could be trying to “save us” from the illness. We have to get to the CORE reason and not just treat or mask symptoms. Especially if those very symptoms could be trying to save us from a worse evil.
well said Issie. But what is so dangerous for our health that our body reacts so violently. I personally think that our symptoms can be compensatory. The symptoms of CFS/ME are not specific. That makes it more difficult. Yet objectively speaking, a double exercise test. HRV test and a blood flow test to the brain are currently the best to distinguish a certain group of patients. So you can then search further from here. Especially the greatly reduced blood flow to the brain and organs can explain the response of overactivity of the autonomic nervous system and the fight-flight response and air hunger. Lung Covid also has a blood circulation and oxygen problem in my opinion. I think that’s the common evil. And somehow we are stuck in this loop. The bloodflow/oxygen dysfucntion can explain everything.
@Gijs, thanks!
But let’s go deeper than that. Let’s find out what caused the blood flow and oxygen problem in the first place that causes us to have a need for our autonomic nervous system to kick in with our POTS. We know those are some of the symptoms that all of us POTS people have. And some of us realize that we don’t want to suppress that compensation of the heart to help this blood flow and oxygen delivery to our brains and heart……as its trying to save us. (We can however assist our heart and it not have to work so hard for that full body delivery of blood and oxygen, by fidgeting and tensing and releasing muscles in legs to help assist that pumping action.) But, stopping a symptom that is trying to save us….. not so good an idea. Even if it is most uncomfortable and ramps up the fight or flight system and causes anxiety. Our body is trying to save us. If we get to the CORE of those symptoms we may can have a tweak that won’t hurt us and may help us and then the body can calm down those symptoms because they will no longer be necessary.
There are possible causes for the problems here. Are the veins too constricted, is the blood too thick. Is there low blood volume, are we dehydrated. Are there underlying other illness causing these problems. We have to go deeper. We can acknowledge the symptoms as a problem. But we need the WHYs of what’s causing the problem. In order to be able to get to the underlying original problem to tweak it. We may not can totally “fix” it. But the closer we get to the start of a dysfunction the better “bandaid” we get and the better quality of life we will have. And its all about quality of life…..for ever how much more quantity we have left.
I think that it has (almost) been proven that POTS/ME (for a subgroup 10-30%) is an autoimmune disease.
https://www.eurekalert.org/pub_releases/2021-03/uot-nra031521.php
This work need be replicated.
@Gigi, I sure wish that antibody test would had proven true for me….but it doesn’t. I have been in some research studies and had all sorts of antibody testing to look for those markers and I’m negative for them. (But whether or not it would show up with me would be in question because of my Hypogammaglobulinemia.) I do, however, have the inflammation markers that are talked of in that article. POTS also runs in my family. My maternal grandmother had it and my nephew(s) have it too. Sooooo, it can have genetic components too.
The immune system and the endocrine system have an inverse relationship. Whenever the immune system is activated, the endocrine system (i.e. metabolism) winds down. (This is commonly referred to as “sickness behavior.”) Because the endocrine system lags behind the immune system, after a “hyper” state, patients will inevitably experience a “hypo” state. This endocrine response is often misdiagnosed as “depression.”
The French studies of low energy/hypometabolism in various parts of the brain caught my attention. I’ve had various kinds of this, I think, since 2007.
I appreciate Cort taking up this subject. I too have spent a great deal of time trying to make sense of Long COVID. Other chronic viral conditions make the host particularly susceptible to new viral illness like COVID-19. Most Herpes viruses handicap ones immune symptoms blocking for instance NK cells (natural killer) and CD8+ to mention the most important. There are many other areas of immune suppression.
Dr. Pridgen, thanks for your observations here with CD8 T cells and immune system connections.
Dejurgen and I have both been tweaking our CD8 and CD4 with a supplement and are doing much better with it. It is a bee product with propolis, bee pollen and royal jelly. Dejurgen for example had, up to last year, clear hay fever with running and stuffed nose and sneezing during all of the hay fever season. This year, despite some very high peaks in pollen, he didn’t have running nor stuffed nose or sneezing when going outside even during high measured pollen peaks in the air. He considers the use of this combined bee product with propolis, bee pollen and royal jelly to play an important role in this clear improvement.
Here is a link to bee Propolis and it moderating CD8 and CD4 or, as what I have written about more, Activating T cells and Suppressor T cells.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6335834/
The immunomodulatory effects of propolis have been considered complementary and/or alternative treatment for many immune disorders.[6] In an in vitro study, propolis showed immunomodulatory effects on macrophages,[7] while propolis increased the ratio of CD4+/CD8+ T-cells in vivo in mice.[8] This could explain why propolis is used in acute and chronic inflammations in the lower and upper airway diseases, cutaneous ulcers, pharingotracheitis, periodontis, and sinusitis.[9]
>>>>This one has more detail and technical.
https://www.ijpsonline.com/articles/immunomodulatory-effects-of-propolis-and-its-components-on-basic-immune-cell-functions-3658.html
While Dejurgen has taken propolis products before for his hay fever and still does, he experiences a much bigger improvement from taking the combined bee product on top of the anti-hayfever propolis product he used before. He actually is doing a lot better on it for hay fever then he was when still using cortisone like anti inflammatory products while having very little downsides. Downsides of the steroid anti-inflammatory product were clear: extra nose bleeding and long rebound effects after stopping the product after hay fever season.