Ruhoy and Kaufman take on one of Dr. Ruhoy’s favorite topics – the connective tissues
This is the fifth in our series covering two experts as they explore different facets of complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), postural orthostatic tachycardia syndrome (POTS), and long COVID in their “Unraveled” Patreon podcast series. This blog covers episode 13 on connective tissues.
Join Patreon and watch the episodes, and the dozens of others, by joining Patreon for about $9/month. It’s the best deal in town.
- Unraveled #1: The “Septad” – a Treatment Roadmap for ME/CFS, POTS, Long COVID: From “Unraveled” a Patreon Broadcast from Dr. Kaufman and Ruhoy
- Unraveled #2:: Kaufman and Ruhoy on Craniocervical Instability in ME/CFS and Allied Disorders
- Unraveled #3: Ruhoy and Kaufman on Idiopathic Intracranial Hypertension in ME/CFS and Complex Diseases
- Unraveled #4: Drs. Ruhoy and Kaufman on Sleep in ME/CFS, FM, Long COVID and Allied Diseases
- Unraveled #5: The Connective Tissues
The blog also takes from Dr. Ruhoy’s talk on connective tissues and ME/CFS in her NIH Roadmap presentation in the Lesser Studies Pathologies section.
The Connective Tissues and Chronic, Complex Illnesses
“It is a mysterious and wondrous organ in its own right and holds so many important functions in the body”…Ruhoy
“I think more about connective tissues than anything else these days“…Ruhoy
Check out Geoff’s Narration
The Gist
The Blog
We don’t realize how important connective tissues are. Besides lining the highways of our bodies (blood vessels, lymph system, lungs, and the GI tract), connective tissues surround, protect, and keep in place our nerves, eyes, and other organs. They are also major components of our muscles, ligaments, tendons, cartilage, and bones, as well as the meninges and dura mater covering the brain.
THE GIST
- We are back with our fifth overview of the Unraveled podcasts led by two chronic, complex illness experts: Dr. Ruhoy and Dr. Kaufman. (Check out the list at the top of the blog). This blog also covers Dr. Ruhoy’s connective tissue talk at the “Less Studies Pathologies” part of the NIH’s Roadmap series on ME/CFS (see the video featured in the blog) and check out Geoff’s narration of The GIST.
- Connective tissues are everywhere. They line the blood vessels, lymph system, lungs, and the GI tract. They surround, protect, and keep in place our nerves, eyes, and other organs. They’re also major components of our muscles, ligaments, tendons, cartilage, and bones, as well as the meninges and dura mater covering the brain (see blog for video).
- Because connective tissue is everywhere, connective tissue problems can potentially affect almost everything. Blood and lymph flows, gut functioning, neuroinflammation in the brain, muscle issues, inflammation, and spinal problems; the list goes on and on.
- Kaufman and Ruhoy believe the connective tissue problems they see in most of their patients are “acquired”; i.e. they result from an infection or some other environmental (e.g. outside) insult that kicks off an inflammatory process that damages specific connective tissues. While joint hypermobility increases the risk of connective tissue disorders, most people with joint hypermobility are healthy. Many of Kaufman and Ruhoy’s connective tissue disease patients exhibit joint hypermobility only in one tissue.
- Connective tissue problems in the brain and spine can cause high or low intracranial cerebral spinal fluid pressure, cerebral spinal fluid leaks, craniocervical instability, Tarlov cysts, spinal stenosis, and more. These problems can ripple throughout the body affecting the autonomic nervous, immune, and endocrine systems.
- Connective tissues have shown up intermittently over time ME/CFS. Peter Rowe uncovered the presence of hypermobility and neuromuscular strain and showed that proper physical therapy can be helpful. Jeff Woods and Jen Brea’s successful craniocervical instability surgery highlighted how devastating connective tissue damage (to the ligaments that hold up the skull) can be.
- A large Swedish study found high rates of intracranial hypertension (high cerebral spinal fluid blood pressure) and craniocervical abnormalities in ME/CFS/FM. Several studies recently have also found evidence of connective tissue problems.
- Through a series of papers over the past ten years, Hulens and Higgins have been alerting researchers and doctors of the possible complications of connective tissue damage such as intracranial hyper/hypotension, cerebral spinal fluid leaks, Tarlov cysts, and empty sella syndrome.
- How big a role might connective tissue problems play in these diseases? Dr. Ruhoy said she thinks about connective tissue issues more than any other. While she has a handle on treating other common issues (POTS, gut issues, mast cells, etc.) treating connective tissue problems is another matter.
- Physical therapy – keeping the body in alignment with a physical therapist competent in the kinds of issues found (joint hypermobility) is a mainstay to reduce inflammation. If craniocervical instability (CCI) is present using invasive traction to assess where a patient will benefit is a necessity. (Not everyone with ME/CFS who has CCI will be helped by surgery).
- Both Ruhoy and Kaufman are big fans of GHK, a peptide that enhances collagen deposition (connective tissue) and is used for wound healing. Dr. Ruhoy warned, though, that for peptides to be effective, they must be freshly compounded – and that means a prescription.
- Ayurvedic medicine protocols can strengthen connective tissue by tamping down inflammation. On the nutrition front, there’s the Cusak Protocol which uses supplements to strengthen the connective tissue.
- Improving mitochondrial health comes into play as well. Both doctors believe mitochondrial problems may be causing a lot of mischief. Not only do strong mitochondria help to tame inflammation, but damaged mitochondria can vastly increase it.
- Plenty of options to improve mitochondrial health exist (Zone 2 exercise, red light therapy, H5, intermittent fasting, oxaloacetate, and others). Ruhoy uses a mitochondrial cocktail to increase energy levels. (Unfortunately, we didn’t get the ingredients.) I didn’t get the impression that the results are spectacular, but the treatments can help. (A review of the Unraveled episode on the mitochondria is coming up.)
- Low-dose Rapamycin is an intriguing possibility! Kaufman said that a great deal of evidence suggests that Rapamycin reduces inflammation and aging, and helps to vacuum clean up damaged cells and he thought it might “be an amazing drug for our patients”. The evidence is limited but it suggests that Rapamycin may even be able to reverse connective tissue damage – the holy grail of connective tissue treatment. Check out Health Rising’s blog on Simmaron’s Rapamycin trial and a doctor who recovered from ME/CFS using Rapamycin in the blog (see highlighted blogs).
- Dr. Ruhoy believes, that ultimately, stem cells may be the answer to repairing connective tissues. Calling stem cells the future of medicine Dr. Ruhoy noted that a stem cell Mt. Sinai study is getting underway.
- Connective tissues are a relatively new arena of study in these diseases but interest in them is rising rapidly. These two doctors are clearly at the tip of the spear when it comes to understanding and figuring out what to do with the connective tissues issues present. When better connective tissue treatments occur, they’ll surely be the first to give them a try.
- After saying “I think more about connective tissue than anything else”, Dr. Ruhoy ended the Patreon session by saying “We’re on it”!
Take something as simple as a blood draw. If you have trouble with blood draws, the connective tissues surrounding your blood vessels may have become hardened or the connective tissue holding the blood vessels in place may have become too loose. It may not be surprising that three of the first five Unraveled podcasts Health Rising has covered in one way or another involved the connective tissues.
A lot can go wrong with such a comprehensive and diverse group of tissues. Over 400 different heritable connective tissue disorders have been identified, and in Ehlers-Danlos Syndrome (EDS), 14 different clinical EDS subtypes are recognized – and that doesn’t take into account acquired connective tissue conditions that have shown up in post-viral diseases.
Acquired Connective Tissue Diseases
While most of the connective tissue diseases have genetic origins, both Kaufman and Ruhoy believe the connective tissue problems they see in many of their patients are “acquired”; i.e. they’re the result of an infection or some other environmental (e.g. outside) insult that kicks off an inflammatory process that damages specific connective tissues.
Indeed, while the ligaments in the necks of the ME/CFS/FM/long-COVID patients with craniocervical instability are hypermobile, that’s often the only part of their body that is. While hypermobile people are more prone to connective tissue problems like craniocervical instability, people with no connective tissue problems can – and do – come down with them frequently.
Indeed, autoimmune disorders like sarcoid, Sjögren’s, scleroderma, and systemic lupus erythematosus, as well as tethered cord syndrome, cranial cervical instability, intracranial hypertension, intracranial hypotension, and median arcuate ligament syndrome can all result from “acquired” connective tissue problems.
The point is that you don’t have to have a “connective tissue disorder” to have connective tissue problems.
The Brain
Check out the dura mater – a protective connective tissue that protects the brain.
Take the brain. Connective tissue problems can act like a tourniquet on the veins in the brain, causing congestion and intracranial hypertension (high spinal fluid pressure). They can also weaken the dura mater – the thick membrane surrounding the brain and spinal cord – causing cerebral spinal fluid leaks, and the opposite problem – intracranial hypotension (low cerebral spinal fluid pressure).
Because mast cells permeate the dura mater (as well as other connective tissues) and live close to the pain-sensing neurons, mast cell activation can both degrade connective tissues and result in more pain, etc.
Activated mast cells next to the blood-brain barrier could wreak havoc on it, allowing all sorts of foreign materials (to the brain) into the brain, resulting in neuroinflammation – which Jarred Younger believes is pretty much a done deal in ME/CFS.
The Spine
Because the spine is a series of joints held together by connective tissues, it’s uniquely vulnerable to connective tissue issues. A weakening of the spinal connective tissues can result in problems like Chiari malformation Type I, atlantoaxial instability, and craniocervical instability.
Just as with the dura mater, connective tissues protect the nerves. If that protective layer fails, nerves are vulnerable to becoming compressed and irritated.
The foramen magnum – the hole at the base of the skull through which several ligaments, several arteries, and nerves pass – and which tonsils, the cerebellum, the lower end of the brainstem abut – is an exceptionally complex and important piece of real estate. It’s also potentially a weak point structurally. Mess up the ligaments that keep the foramen magnum centered properly, and all sorts of problems can ensue.
Heading south, we come to the craniocervical junction (CCJ) at the top and most mobile part of the spine. The CCJ contains arteries, nerve roots, cerebral spinal fluid, and the bottom of the brainstem. Connective tissue damage to the ligaments that keep this junction centered and working can result in craniocervical instability (CCI).
CCI can result in reduced blood flow into and out of the brain, compressed nerves, reduced cerebral spinal fluid flows, and affect the heartbeat, breathing and blood pressure, sleep, breathing and swallowing, sensory stimuli and touch. Because this area of the brain speaks to the HPA axis and autonomic nervous system, problems there can wreak havoc with those systems which, in turn, affect the immune, gut, cardiovascular, etc. systems.
Continuing to track downwards, an instability of the spine caused by weakened connective tissue can produce scoliosis (horizontal curvature of the spine), kyphosis (upper back curve), listhesis, (slippage of vertebral bodies over one another), spinal stenosis (compressed spinal cord), and further cervical myelopathy (spinal cord damage).
That’s just the brain and the spine! It turns out that connective tissues are also full of innate immune cells, including mast cells. Simply the presence of “loosey-goosey” and overstretched connective tissues can produce inflammation. In lipidema, for instance, which often shows up during hormonal changes in women, the loss of “elastic recoil” allows fat to settle in the interstitial spaces rather than be cleared by the lymphatic system.
Kaufman said that after 30 years as an infectious disease specialist that the fact that infections could result in connective tissue damage was a rude awakening.
The Awakening
My guess is that ten years ago, almost no one thought of connective tissues about ME/CFS and only a few did for fibromyalgia. Even though we now believe that infections can trigger connective tissue breakdowns and may play a major role in post-infectious illnesses, Dr. Kaufman noted that in his 30 years in infectious disease work, he’d never encountered connective tissue disorders. Recognizing that connective tissue does matter was a rude awakening for him.
While connective tissue problems have historically never played a central role in ME/CFS or fibromyalgia research, they have popped up from time to time.
Chronic Fatigue Syndrome (ME/CFS)
Not surprisingly, it was that supreme diagnostician Peter Rowe back in 1999 who first alerted the ME/CFS/FM world to the joint hypermobility/ME/CFS connection. In 2013 and 2014, Rowe uncovered another possible indication of connective tissue problems when he documented the presence of “neuromuscular strain” in adolescents with ME/CFS which resulted in reduced range of motion.
In 2016, Rowe showed that simple leg raises could trigger body pain, problems with concentration, lightheadedness, and overall symptoms. He attributed those symptoms to movement restrictions in the tissues that strain the muscles, fascia, spinal cord, peripheral nerves, and soft tissues (!) and contribute to the central sensitization present.
In 2018, Rowe reported on the use of “manual physical techniques”, which by improving the range of motion, improved physical functioning. Rowe also demonstrated that resolving spinal stenosis – a possible result of connective tissue dysfunction – can, in some cases, greatly improve ME/CFS/FM symptoms and orthostatic intolerance.
Van Putte, a Dutch researcher, asked whether connective tissue laxity was present in ME/CFS in a small 2005 study. British researchers found that joint hypermobility was common in both fibromyalgia and ME/CFS in 2021. A 2023 study did not find increased joint hypermobility after infectious mononucleosis, but a 2024 Solve M.E. study found that ME/CFS patients with joint hypermobility, particularly those with Ehlers-Danlos Syndrome, had more severe symptoms and reduced quality of life.
Jeff and Jen’s successful surgeries to fix their craniocervical instability – caused by damage to the ligaments in the brain – produced a wave of shock (heavy-duty spinal surgery!) and awe (complete recoveries!) to spread through the ME/CFS community. A large 2020 Swedish study confirmed that connective tissue issues, or problems related to them, were common when it frequently found hypermobility, signs of idiopathic intracranial hypertension, and craniocervical obstructions.
Through a series of papers over the past ten years, Hulens and Higgins have been alerting researchers and doctors of the possible complications of connective tissue damage such as intracranial hyper/hypotension, cerebral spinal fluid leaks, Tarlov cysts, and empty sella syndrome.
Fibromyalgia
In fibromyalgia, altered levels of collagen – a major component of connective tissues – showed up in 1998 and have been found several times since. In 2021, Eccles found that 81% of ME/CFS and/or FM patients met the Brighton criteria for hypermobility syndrome and 18% met 2017 hypermobile Ehlers-Danlos syndrome (hEDS) criteria. A 2022 systemic review reported on the strong overlap between FM and hypermobile Ehlers-Danlos Syndrome (hEDS) prevalence and the many similar symptoms including joint pain and swelling, muscle weakness, neurological problems, dysautonomia and quality of life.
Ruhoy pointed out that the trigger points in FM (and presumably myofascial pain syndrome) are all about the connective tissue. They appear to occur in areas where thinned-out “fascial planes” leave the nerves below them twitchy and irritated – possibly leading to small fiber neuropathy – a condition found in many people with fibromyalgia, ME/CFS, and long COVID.
Long COVID
The first link to long COVID came in a paper proposing that joint hypermobility plus a coronavirus infection could lead to fibromyalgia. Beth Pollack’s 2023 paper showed that diseases like long COVID, POTS, ME/CFS, and connective tissue disorders share many gynecological features. A 350,000-person study found that COVID-19 “was associated with a substantial risk for autoimmune and autoinflammatory connective tissue disorders” and a genetic analysis highlighted the “cognitive-behavioral, neuro-autonomic, and immune-inflammatory alterations of connective tissue in these conditions.”
The Hypermobility Question
Over here in ME/CFS/POTS land, we often think of hypermobility – the ability to move joints in ways they don’t seem intended to go – as a connective tissue problem, but it’s not necessarily so. The connective tissue is changed in hypermobility, but it’s not necessarily a problem. Millions of people with hypermobility are just fine. It takes some extra hit – an infection, an exposure to some toxin, physical or emotional trauma – to turn hypermobility pathogenic.
Indeed, Dr. Kaufman stated that one of his “aha” moments regarding connective tissue was the realization that the connective tissue was not static and that repeated insults that produce inflammation (mast cell activation, coronary artery disease, atherosclerosis) can affect it. Both Kaufman and Ruhoy are coming to believe that the impact of chronic inflammation on connective tissues plays a large role in aging.
Treatment
“I sit and I meditate on connective tissues” Dr. Ruhoy
CCI, Traction and Surgery
Jeff’s and Jen Brea’s CCI stories put craniocervical instability (CCI) – a rather harrowing diagnosis that can require an extensive surgical procedure to remedy – on the map. Not all cases of CCI, though, require surgery – and not all cases of CCI contribute to ME/CFS symptoms. (Some ME/CFS patients who underwent CCI have not improved substantially.)
Dr. Ruhoy noted that she attempts conservative management first, and requires that CCI patients meet several criteria, including invasive cervical traction, which very often requires ICP bolt monitoring, to identify patients likely to improve from surgery.
When asked if non-severe, non-bedbound cases with suspected neck compression or instability, physical therapy should be tried, the answer was a definite ‘yes’. An EDS-literate physical therapist who understands CCI, connective tissue issues, and the spine is “completely warranted”. Many very competent and literate physical therapists are available, but you have to find one.
Treating Other Connective Tissue Problems
Two treatment focuses are present: tamping down the inflammatory insult that’s damaging the connective tissues, and repairing the damage that’s been done. Studies are rare, leaving doctors to venture out on the skinny branches and take educated guesses.
That’s what these curious and empathetic doctors do. Dr. Ruhoy, her heart on her sleeve, simply said, “I can’t stand suffering. I hate when anyone suffers”, and so tries out new things she thinks might work at low doses. A lot of the experimentation she does, she said, is trying to fix the connective tissues.
Tamping Down Inflammation
Tamping down inflammation is much more doable, and that means physical therapy to keep the body in alignment, thereby destressing the connective tissues and keeping the immune system from reacting and the nerves from acting up.
Dr. Ruhoy called a physical therapist who keeps the body in alignment a cornerstone of connective tissue treatment. (Check out an EDS manual written by an EDS-literate physical therapist.)
Both Ruhoy and Kaufman are big fans of GHK, a peptide that enhances collagen deposition (connective tissue) and is used for wound healing. Peptides have become a big deal recently. Dr. Ruhoy warned, though, that for peptides to be effective, they must be freshly compounded.
Dr. Ruhoy noted that Ayurvedic medicine protocols can strengthen connective tissue by tamping down inflammation. On the nutrition front, there’s the Cusak Protocol which uses supplements to try and strengthen the connective tissue.
Improving mitochondrial health comes into play as well. Both doctors believe mitochondrial problems may be causing a lot of mischief. Not only do strong mitochondria help to tame inflammation, but damaged mitochondria can vastly increase it.
Kaufman started off skeptical when it came to enhancing mitochondrial health, but when he found that using oxaloacetate significantly improved 3/4’s of patients’ fatigue, his most difficult-to-treat symptom, he became a believer.
Plenty of options to improve mitochondrial health exist (Zone 2 exercise, red light therapy, H5, intermittent fasting, oxaloacetate, and others). Ruhoy uses a mitochondrial cocktail to increase energy levels. (Unfortunately, we didn’t get the ingredients.) I didn’t get the impression that the results are spectacular, but the treatments can help.
- More on the mitochondria is coming up when Health Rising covers Unraveled’s mitochondria episode.
Repairing Connective Tissues
Dr. Ruhoy said she had at least an answer for just about everything (SIBO, mast cells, POTS, etc.); i.e. she can put together a plan, and knows where to start, etc. – but repairing connective tissue – that’s a tough one.
Low-dose Rapamycin is an intriguing possibility, though. Kaufman said that a great deal of evidence suggests that Rapamycin reduces inflammation and aging, and helps to vacuum clean up damaged cells.
In this podcast – done 9 months before the Simmaron Research Foundation began their Rapamycin trial – Kaufman said he thought it might “be an amazing drug for our patients” as the scant data thus far available suggests it might be able to reverse connective tissue damage. (Kaufman warned about trying to get and use Rapamycin without your doctor’s permission.)
Stem cells may ultimately be the answer. Dr. Ruhoy believes stem cells are the future of medicine and noted that a stem cell Mt. Sinai study is getting underway.
Moving Forward
The connective tissues are found almost everywhere in the body. Dr. Ruhoy said she thinks about them more than anything else in these diseases.
Connective tissues were a late, surprising, and in some ways disturbing entry into the ME/CFS/FM, post-viral illness, and long–COVID fields. Dr. Ruhoy was surely referring to the craniocervical issues below when she described the field stumbling upon them. That occurred when a very determined patient, Jeff, uncovered them. Ruhoy said, “we cannot un-see a pattern that we have seen over and over again”. We’re just beginning to learn how important connective tissues are.
Toward the end of her Roadmap talk, Dr. Ruhoy laid out where we are:
“So, what we have stumbled upon, what we think we know, what we do not understand, what we have done, and what we are planning to do are important topics that we need to have further discussions on. We cannot see a pattern that lies in a direction towards which we are not looking. And we cannot see a pattern if our sample is too small. And we cannot un-see a pattern that we have seen over and over. And that, I think, is what I often try to explain.”
The insertion of a connective tissue talk into the Roadmap Initiative at the NIH indicates that connective tissues are getting recognized. These two doctors are clearly at the tip of the spear when it comes to understanding and treating them. When better connective tissue treatments show up I have the feeling they will be all over them.
After saying “I think more about connective tissue than anything else”, Dr. Ruhoy ended the Patreon session by saying “We’re on it”!
I am extremely grateful and hopeful to see this. My own connective tissue became damaged and loose while leaking (I had a spinal CSF leak/leaks damage connective tissue) and I experienced symptoms of CCI. I went from having normal skin to being able to stretch the skin of my neck past my ear. I could not hold up my own head. My face seemed to sag and eyes droop. I developed an aneurysm in my palm. Everything was awful.
Those issues resolved almost immediately when the leak was sealed. I could hold my head up without issue and my skin (and presumably my internal/not visible connective tissue) returned to normal.
The body is a system and so often we’re treating a symptom instead of the underlying cause. For me, the leak was driving countless neurological and autonomic issues, and affected nearly every part of my body. I can’t wait to see what these studies yield.
If you put Melissa’s name or cerebral spinal fluid leak or intracranial hypertension into the search bar you should come up with several blogs Melissa has done for Health Rising.
Can we add lipedema to the connective tissue chat? Incredibly common in AFAB people, known to kick into high gear at the same life stages that many AFAB ME patients get sick (teens, pregnancy, perimenopause), a cause of system-wide inflammation, lymphatic failure and fatigue.
And yet I only found out what it was by accident, reading a review of a specialist for something completely different, last year.
Yes, lipidema – that doesn’t sound like fun – what is AFAB?
Cort – I believe AFAB in this case refers to Assigned Female at Birth. There’s also AMAB, which would be assigned male…
Some correction. Abt the Swedish study you write hypertension, it should be intracranial hypertension.
And on supplements for connective tissues issues, one should be aware of if there is a genetic probrem like in EDS then there – if at all – will ofcourse only produce more faulty collagen not “better” collagen. Check EDS Society on that. Maybe that accuired connective tissue issues it works, dunno.
Physical therapy for neck instability is ALWAYS the first resort. Espescially if you have faulty connective tissues. And it is that physical therapy tha you do not even notice your doing, careful stabalization (speling again…) of the small stabilizating muscles holding your spine/neck together. Do check Jennie deBon physiotherapist also an EDS Society “webinarer” on the topic. She has an youtube channel as well as several webinars on EDS Society’s youtube.
By the way Peter Rowe has also webinars on the EDS Society channel as well on Dysautonomia International – and several ME Channels.
Otherwise, yes, connective tissue issues and connection to ME/FM is interesting. In the EDS Community one claims that many are misdiagnosed with FM (FM being a disease of central censitization (darn spelling!) ) and ME patients also first get FM diagnosed. Etc.
There are definitely overlapping symtoms and shared comorbidities. What are overlapping symtoms, overlapping syndromes, comorbidities? Sometimes I think that same symtom in different diseases/conditions have the same cause/mechanism or maybe different underlying causes but same mechanism just for that symtom? If we could find the cause/reason for every (main) symtom could we adress them one by one? All together?
When reading how covid rage in our bodies and cause several diseases in the same patient even, should we still look for “one ring to rule them all”)? By the way MS researchers are doing that by thinking vaccination for EBV … Can we vaccinate for all viruses that wreak havoc? And prevent postviral illnesses, maybe even diabetes etc?
Vaccination won’t be the answer. It will make things even worse. Just like with the covid vaccine that also causes long covid or in other words long vax…. and damage.
https://www1.racgp.org.au/ajgp/2024/april/long-covid-sufferers-can-take-heart
@Kajsa, thank you for mentioning the futility of changing genetically caused connective tissue quality with supplements. Having EDS myself and having spent years reading research on it, some of the comments made by Drs. R and K are rather speculative. There is a dearth of research out there. For instance, I have heard of stories of folks developing hypermobility after an illness or trauma, but they are very rare.
Probably, like ME/CFS there are multiple subsets even within the Hypermobile category of EDS, and researchers certainly don’t know all. Anyway, there is a lot of overlap between ‘types’ of EDS and there still is a lot of controversy on how to define each.
Dr. Peter Rowe is kind of a hero in the EDS world and bless him for that. I recommend reading his research. Much of the information in this blog is ‘old news’ to EDSers. Cort, I remember you having a previous blog which deals with EDS and it is a good one.
As far as dealing with fatigue in relation to EDS, there is little consistent recommendation for what medications will benefit. Mostly they are used to correct individual issues such as POTS. The old standby, low and slow physical therapy, is the best universal therapy, but is difficult when one is dealing with fatigue. Surgery should be the last resort because of slow and poor healing–and other surgical ‘surprises’ like excessive bleeding or problems with anesthesia.
I do hope there is more research into this because there is a lot we need to know rather than speculate.
Here’s to finding ways to actually repair connective tissue! I have a feeling that when one pops up that Dr. Ruhoy, in particular, will be all over it – and how nice to know that she is on it – and she is keeping us appraised.
Cort, please have at Liz Parrish from bioviva. She’s been reversing biological age in herself and patients for about ten years. She’s improved her body strength, muscle mass and markers of health massively.
By this point, she must have treated some people with CFS. The regrowth of muscle. And tissue is confirmed by MRI.
I also wonder if stem cell therapy would be an option. A lot of fighters use them for recovery after injury. Even John cleese of all people has stem cell therapy and swears by it!!!
Then there’s CRISPR. If we can identify individual genes then great…I’m sure it’s an avenue that will eventually bring cures for connective tissue problems but I think sadly that’s a long way of.
But Liz Parrish, her regenerative medicine therapies have been proven to rebuild tissue
You’ve probably need a way to genetically cure HSD/EDS in that case, unless you’re talking abt accuired laxity. There is a speculation on mastcells affecting collagen structure, and also something abt b-vitamins.
But as specialists in EDS/HSD agree on it is genetic. They also think it’s not one single gene involved but several. And also maybe subgroups. And which they are is unknown. There is a large study ongoing HEDGE. And some other studies as well.
I agree with both Nancy B and Oliver Bird. And what Oliver Bird is mentioned is well known that EDS/HSD often can occur when there is an insult in another way as for instance deconditioning due to injuries or other diseases. Just because our EDS-bodies does not hold together by our collagen as for most, but by our stabilizing musculature.
My doctor that diagnosed ME said that EDS could be a vunerability for ME. Some EDS researcher/doctors think that a proportion of ME-population actually are undiagnosed EDS-ers, as fatigue and exercize intolerance is a huge issue with EDS. As well as many comorbidities are common. By the way, comorbidities or symtoms …?
Well, never say never; here is a study which compares folate levels in persons with MTHFR and hypermobility. https://ehlersdanlosnews.com/news/genetic-variations-affecting-folate-metabolism-common-heds/?utm_source=EDS&utm_campaign=5745ebcc07-Email_ENL_US_EDS&utm_medium=email&utm_term=0_14b3a6db71-5745ebcc07-73931725
I actually participated in a Dr. Klimas study where I stopped taking folate and then tested my homocysteine levels–which shot up. Not good. Then I resumed folate (methyl not cyano) and my homocysteine levels returned to normal. Not sure how it affected my hypermobility, but it is interesting to note.
Besides things like CRISPR, when one has a glitch in the genetics, there can possibly be ‘work arounds’ to get the body compatible nutrients.
As a side note, most of the 13 (now 14 I think) types of recognized Ehlers-Danlos have identified genetics–excepting hEDS. Researchers think it is polygenetic. Because there are a lot of exceptions to ‘Classical’ type, there is now a category called clEDS or Classical Like EDS (which used to include TNXB EDS). Since connective tissues are made up from a number of ‘Factors’, each with different characteristics, defining the effects of abnormal connective tissue can become quite complicated.
And then there are the many people who have just an odd joint or two which exhibit extreme hypermobility–and no where else. Ah, so much to consider…
It’s definitely a spectrum disease that makes the Beighton tests too crude I think
Like you say you can have someone who only has say a propensity to discolate one shoulder.
Or you can have tissues that’s faulty in say just one major organ.
Of course for many it will be systemic.
But all those illnesses like irritable bowel, migraines etc, I believe will turn out to be tissue based disorders.
I also believe there will be hierarchies of tissue found. We are but one tribe.!!!
What is resilience? Why are some people literally and metaphorically so thick skinned?
I think the scientist I mentioned could help is with frailty of tissue.
I saw John cleese is using stem cells to treat his old age!
Crispr would be great but unless there’s major funding, that’s decades away.
There’s a great vitamin b deficiency group on Facebook. People get remission from autism in some cases and from CFS. It’s such a complicated protocol to follow tho
I think your right. I think eds is such an untapped, misunderstood condition.
Personally , I don’t think it’s acquired. I just think we’re strong enough not to have the condition show up clinically at birth. I think down the line, the insults of life, which age everyone, uncover the weakness that was already there
I think a lot of work has to be done on tissue types. I know many of us have been saying for years that the issue is in the tissue. It’s ground zero.
I personally believe we’re a construct of the tribe. The sensitive has a hell of a lot to offer in tribal life including usually being subservient to other more aggressive and strong tissues individuals.
But as the rcccx theory points out, it also throws up mutations for genius etc.
If it turns out that m.e., fibro, lymes etc are all more subtle forms of undiagnosed EDS then that’s a large slice of the population.
Even issues such as reflux IBS and allergies probably have their root in faulty tissue.
I really wish someone would see the elephant in the room and do a deep dive . I know Jen brea is looking into it.
I also have scoliosis and quite pronounced kyphosis.
Otherwise, I’ll give you a link to a video by Dr. Wagner on photobiomodulation (red light).
https://youtu.be/rTJYdKIeb2Y
The video is in French, but is subtitled in several languages.
Dr. Wagner, oncologist, is a specialist in chronic pain and fatigue in cancers, fibro, ME/CFS, osteoarthritis…, by red light.. For him, fibro and ME/CFS are problems of mitochondria. The photobiomodulation device must be whole body, otherwise it is not effective. According to him, 95% of patients have good results at 80% effectiveness.
There are full body red light centers in every country, luckily if there is one near you.
Claudine, did photobiomodulation help fatigue and overall pain?
Elisabeth, according to Dr. Wagner, pain specialist, red light is effective for fatigue and for all kinds of pain. He says the machine must treat the whole body. Examples of machines: the BODY BED BOOST, the NOVOTOR… They can be found in certain beauty centers and in certain pain centers.
I haven’t tried photobiomodulation yet, I will start the sessions next month.
(I don’t often comment on the site because I’m not sure the google chrome translation is exactly what I mean, that’s why I also put the comment in French for those who can read both)
Elisabeth, selon le Dr Wagner, spécialiste de la douleur, la lumière rouge est efficace pour la fatigue et pour toutes sortes de douleurs. Il affirme que la machine doit traiter tout le corps. Exemples de machines : le Body Bed Boost, le Novotor… On peut les trouver dans certains centres esthétiques et dans certains centres antidouleurs.
Je n’ai pas encore testé la photobiomodulation, je commencerai les séances le mois prochain.
(Je ne commente pas souvent sur le site car je ne suis pas sûre que la traduction google chrome soit exactement ce que je veux dire, c’est pourquoi je mets aussi le commentaire en français pour ceux qui peuvent lire les deux)
Thank you for your reply. I have an appointment on Monday for 15 minutes of full body. I hope it helps you and me!
Thanks – we did a blog on green light but red light has very different properties.
But what’s causing the poor functioning of the mitochondria? I believe even at the cellular level, mitos are not as well constructed and that’s where the problem is at at its root. Doesn’t make sense for some people’s mitos not to work properly. We’re all exposed to so many bio hazards etc but not everyone’s cell danger response is initiated…why?
Tissue strength.
I wonder does anyone know what happened to suramin after it’s successful trialling?
Dr. Paul Cheney was always ahead of his time. He first tried stem cells by taking a number of ME/CFS patients to Panama for full body stem cell treatment. The patients improved at first, but after a year of so reverted to their former illness. I believe a few young patients had better results. These treatments were very expensive…$20,000.
It was after this, that Dr. Cheney developed a series of gels, one that contained stem cells from fetal pigs and two others for brain and heart. The stem cell gel is very potent and a tiny amount has a profound effect on me the next day when I am more tired and achy, but after that I feel better.
Dr. Cheney’s family holds the patents for these gels and I believe you can still purchase them. They are not inexpensive, but last several months.
I also use Nexavir, the new cream form of the old drug Kutapressin, which has helped in similar ways and can be purchased directly from the company without a prescription.
Panama seems to be the place it’s at! Liz Parrish is reversing the age of the cell through telomerase and other anti aging pro strengthening methods to rebuild tissue.
I’ve asked the open medicine foundation to contact her years ago
I don’t know if they did. But it’s been clear to me that the tissue is the underlying issue
I remember well Dr. Cheney talking about stem cells – what was it – 20 years ago? That was the first – and probably actually the last time, until this episode, that I heard of them connected with these diseases.
Not one mention of leaky gut?…or did I miss it
Just a really brief mention but since the gut does contain connective tissue gut issues clearly could be a part of this. I looked up the gut and connective tissue and found several layers: Lamina propria: A layer of connective tissue within the mucosa, the Submucosa: elastic fibers with collagen that stretch with increased capacity while maintaining intestinal shape. The Serosa or Adventitia – made up of loose connective tissue coated in mucus to prevent friction damage.
CORT!…
has anyone ever told you, you’re a one of a kind GEM!!
I’m sure I’m speaking for everyone here
Because it would be an eternity for rapamycin to be prescribed, what is the best source now for someone wanting to self experiment?
Horsetail might be of interest for this as it contains big amounts of silica a herb known for its role in promoting bone and connective tissue health.
I think it was beneficial for me, but as I have to watch my potassium I only rarely use it. Will try more when the time is right.
Here’s a recommended ARTE documentation on connective tissue (fasciae) with English subtitles which I’ve linked before: https://www.youtube.com/watch?v=Owd3_JrAseo .
Thanks for covering and summarizing this series. I’ve been copying the Gist And then further, cutting it down to just the actionable information as a quick guide to work with my own doctor. By the way, I personally know a patient of Dr. Ruhoys, who has completely recovered from post exertional malaise following spinal surgery.
Wow…Isn’t that something! If spinal surgery looked like it might be it for me Dr. Ruhoy and Kaufman would be where I would want to go. They make as sure as possible that the outcome will be good. It was interesting to learn that there tests show that not all ME/CFS patients with CCI would help their ME/CFS through surgery.
Hi,
How does emotional trauma cause pathogenic hypermobility?
Could you supply the study reference please
I’d say it exacerbates an already weaker system. We see that most clearly in autistic kids.
Naviaux says once you activate the cell danger response, the inflammatory cascade and micro shut down occurs.
It may be that if you can get to the root of your trauma, you can recover. It just depends on the depth of trauma and the sensitivity of the system
Not to be that guy, but I’ve been saying this for years. I believe regenerative medicine is the only way out of this. I hope I’m wrong. It’s just such a a basic building block, that if there are faults there, there’s very little that can be done if we’re talking in terms of cure.
I’ve been saying people should interview liz Parrish. She’s been rebuilding her own tissue as a patient zero. I’m it for the right reasons, to help cure her son
It’s OK to be that guy 🙂 First time I heard of Liz Parrish and BioViva – Looks like she’s doing some great stuff – thanks for pointing her out.
https://bioviva-science.com/
Thanks Cort. You’re a gent. Regrowing tissue with her therapies seems like smthg to consider.
Do you know what happened to Bob naviaux s suramin. That sounded like it would be a great bridging therapy to ease our suffering
Really inspiring and fascinating article Cort, thanks! It rang so many bells for me, and connected a few dots too. Articles like this are so useful in considering what direction to aim at in our recovery efforts. Because if I don’t pursue an area of investigation or treatment, no one else is going to.
Here in BC, Canada, despite our public system, there’s really no individualized healthcare for these conditions past a certain point. You’ve got to keep researching and trying different combined approaches in order to keep hope of remission and recovery alive. Otherwise a sort of ‘left for dead’ feeling can creep in for many of us.
Taking one specific approach for example, the article mentioned red light therapy for mitochondrial support and I’ve definitely had some success here, using a red light therapy pad on my neck. This allowed me to do neck mobility exercises without throwing my neck out, and this then resulted in overall improvement in my neck, which I believe has many other benefits, as the article suggests…
It’s so true – from vagus nerve stimulation to red light therapy to intermittent fasting to the heads up position for sleep to cryotherapy and on and on there are so many possibilities – almost none of which traditional healthcare providers know of- that might be able to help at least in small ways. A recent study found that a caloric loss diet helped with pain – not because of the weight loss but because something else was happening. Thanks for mentioning the red light approach.
Thanks for that Cort! As for Red Light Therapy, otherwise known as ‘Photobiomodulation’, it works to improve mitochondrial function by increasing ATP production and reducing reactive oxygen species. That much, apparently, is uncontroversial. However there is also a lot of marketing hype to be wary of.
Thank you so much for writing this article! As a former occupational therapist, I repeatedly saw amazing results in most of my patients whenever I treated the fascia directly! Since then I’ve been convinced that restricted fascia can impact any area of the body and result in multiple problems and illnesses. The treatments I trained in and used that were the most effective at making quick and painless systemic changes were craniosacral therapy, myofascial release, and low level laser therapy (cold laser therapy). Unfortunately, I eventually developed Sjogren’s and other autoimmune diseases and had to stop working, but to this day I still use those treatments on myself with much relief. I highly recommend people research these treatment modalities and see if you can find a skilled OT, PT or chiropractor who is experienced in treating fascia. If they are a licensed medical professional, these treatment may be covered by your insurance. These modalities are helpful for so many painful conditions and it saddens me that this is not more widely known! Wishing health and happiness to all here!
Thanks! I can’t remember her name right now but a well known FM doc said massage was the one thing her FM patients always came back for. Peter Rowe says the same thing regarding bodywork his young ME/CFS patients. For me, I finally found a stretching program that works and helps relieve pain and I think helps me exercise a bit more.
Oh, do you mean Dr Travell? She did a lot of writing about trigger points and release. But I found it to be even simpler than that! Releasing restrictions anywhere in the body can result in improvement throughout! So glad you found a good stretching program!! A helpful tip – slow, gentle stretches are the way to go! Too much of a stretch can actually result in the opposite reaction where the tissue resists releasing. Thank you for all your hard work! I love your website and writings!!
One of the first symptoms from FM in addition to pain was the development of fatty tumors under the skin. It happened quickly, and I felt like part of my body was being transformed. I still have all these small lipomas that fortunately have not increased in size, but they do get inflamed and cause pain particularly in the morning and whenever I have a flare.
I am wondering how many people with ME/CFS get their baseline tryptase levels checked. I was surprised to find my baseline is around 30 which indicates a mast cell disorder. I think it is interesting to learn that mast cells play such a key role in connective tissue. Have there been any studies on baseline tryptase levels in people with ME/CFS?
I don’t remember any studies assessing any mast cell tests actually. I wonder if any have been done…Mast cells appear to be mostly the province of doctors.
My son has been ill for 9 years and has a diagnosis of fibromyalgia. He has a previous history of probably hypermobility. But reading this article and comments in particular have realised that all this self help only works in an insurance based healthcare system or for people with money. In the UK NHS system he was offered limited physio, duloxetine and a course on learning to live with pain. No prospect of testing for anything or another of other treatment plans.
The socioeconomic disparities in health care are criminal. I cannot even begin to imagine how frustrating it must be to navigate this disease, in a broken system, fraught with medical gaslighting, for my child no less. I hope that research can find answers to help your son soon!
Did they give you any indication of dosage or administration for ghk? I don’t think the skin creams are what they use. It is also injectable or taken orally. I need to talk to my doctor about a prescription so I can have it freshly compounded and would like some idea of the dose I should ask for. Thanks
I’m searching for this, too. Is there any hint? Thank you
I’m sorry, but why are we talking about Ayurvedic medicine?! I thought we were engaging with science here. I agree that a connection exists, as I’m lying here with excruciating back and neck pain because of cerebrospinal issues. But using magic belief systems to justify it isn’t going to help anyone. We need real medicine.
Because it works in some people. It’s that simple. It’s a matter of letting the patients reports guide you. If something works you have to rejigger what you think about whatever it is.